The Week After-Alzheimer’s in the Family


It’s ten days post operations and I’m doing well. All the bandages have been removed and the incisions are healing nicely.

Physically and mentally I’ve been feeling so much better. It’s amazing and I’m grateful. I had my wound/post operation check with Doctor Goeble on Wednesday and they are amazed by my progress. They still think I’m on track to be a super responder. He released me to drive. Yay. I have driven once but I have to wrap the seatbelt to keep it off the ICD site. It works though.

I should be getting the COVID 19 antigen test soon. It will be good to know if this was the virus that damaged my heart back in January.

ICD site day 2

I’ve started walking a bit and no longer have dizziness, black outs, shortness of breath and a myriad of other symptoms. It’s wonderful. As of July 13th most restrictions will be lifted. I look forward to being able to lift my left arm above my shoulder, among other things.

Washing my hair and putting it in a ponytail without lifting my left elbow above my shoulder has been a challenge. I can do that easily now after some trial and error.

Hair up and incision site almost scarless day 10

As I start life 3.0 I’m feeling blessed and happy to know that I can enjoy a more normal life. On June 2nd the voltage is being adjusted for the ICD. Sometimes it jolts my diaphragm in back to back pulses for a minute or two. It can be uncomfortable but I do know it’s working. Looking forward to that adjustment though.

Mom is still doing well at Dayspring. They are still on lockdown but we talk by phone often. She continues to be happy there and tells me they are family. I look forward to the day that we can share a big old hug. Soon I hope.

Mom before lockdown. I miss her.

As always, more later.

Heart Failure – Alzheimer’s in the Family


My mom is doing great at Dayspring. She knows that I’ve been a little sick but nothing else. Let’s keep it that way.

Some of you know that mom and I had a virus the end of December/first of January. Mom had a low grade fever and cough but nothing else. I had low grade fever, night sweats, and cough. Mild symptoms, really, but not feeling well. About day 8-10 I became very lethargic. Couldn’t do a lot of normal things, including walking from my den to the kitchen.

I went to urgent care on a Sunday. My heart rate was 110. There was low grade fever and lethargy. The doctor ordered bloodwork, x-Ray’s and an EKG. The flu and Epstein Bar tests were negative. The EKG showed a left branch bundle block and the bloodwork was negative for all except for elevated calcium and albumen. The doctor thought I had some type of virus.

I went to my GP the following week and took the records from urgent care. After the exam he scheduled a cardiac workup that included a stress test and electrocardiograph. These tests were completed over a 4 week period. Due to the COVID 19 pandemic, tests couldn’t be done right away and any heart procedure was considered elective surgery and could not be done. My heart was functioning at 30%.

In the meantime I was started on two cardiac medications. This was to hold me over until the cardiologist could get me in for the procedures. It was a stressful wait. My bp would fluctuate from 80/40 to 155/85. When it was low I couldn’t function at all. I had to keep a BP record.

I was restricted from walking, housework, and most day to day activities. The doctor was seeing me every 10 days. When my bp plummeted I would get dizzy or black out while simply walking or doing the dishes. It was a pita.

The hospital opened up for elective surgery last Thursday. My cardiologists, Dr. Goodroe and Dr. Goeble brought me in immediately and scheduled my Cardiac Catheterization and ICD implant back to back on Wednesday, yesterday. My EF factor was still 30% and I have heart failure. The ICD implant is a defibrillator and a pacemaker combined. The pacemaker will help my heart beat more normally and the defibrillator will get my heart started when it quits beating.

The catheterization was done at 7:30 am. It went well and my arteries look great. No narrowing or blockages. Good news. I went back to recovery to wait for the implant procedure. Since I got heparin in the first procedure the Doctor wanted to wait a bit.

I slept a lot and went in for the second surgery at 5:30 pm. I didn’t wake up again until 3:30 am today. My left collarbone felt like I’d been kicked by a mule but everything else was ok. I got a chest x-Ray at 6:30 am and all looked good.

I saw both doctors and PAs soon after returning to my room. They were all pleased with the outcome. 1/3 of my heart muscle is damaged. The implant will help that. I told them that my brain was so much clearer and I actually felt better. They think I may be a super responder which could mean that my heart heals over time. We were all excited.

They also told me and it’s in my record that my sudden onset heart failure is probably related to having the COVID 19 virus. They are ordering a test when I heal a bit and the FDA antigen test becomes available.

I came home a little while ago. No driving for two weeks. No ocean or water body for one month, no lifting anything or raising my arm above shoulder height for two months and back to normal activities in two months. No contact sports ever again but I think I can live with that.

I would urge all of you who read this not to take this virus lightly. Even when things open up please wear a face mask and carry hand sanitizer. Practice social distancing. Even with states opening up there is no vaccine and no herd immunity. Take care of yourself and your loved ones, even those strangers that you may encounter. You won’t regret it.

As always. More later.



Self Isolation – Alzheimer’s in the Family


As this pandemic continues we can only visit mom through phone calls. Our last call was the best yet. Mom was the most lucid that she has been in weeks. She seems to understand that we can’t visit and tells me not to worry about her because “they take good care of me and I’m safe and happy.” You can’t ask for more than that.

In SC our governor opened up the state to tourism this week. There are many people here from COVID 19 hot spots. I continue to isolate and only venture out for doctor appointments and pharmacy. I order groceries online and pick up without going into the store. My doctor had me wearing a face mask and not going into crowds before it became dictated by the government. I’m thankful for a good and informed physician.

I’m amazed at the number of people who don’t take this virus seriously. The beaches are crowded and few are wearing masks or other protective equipment when out and in close proximity to others. There is a six foot rule here but in most places it’s a joke.

Last week we received a text that the seafood market in Surfside had crawfish and stripped bass. We got our masks etc and headed over. The market only allows 3 in at a time and the employees wore PPE and operate pretty safely. We were the only customers who had on a mask. A man 6 feet ahead of us was about 75 years old and maskless. When he saw me in my mask he went into a diatribe about the virus being a hoax and the liberals doing anything to discredit Trump. He continued railing about it and I just ignored him.

Bless his heart. He was the third that was allowed in the market with us. He finished shopping and paid and then came over to glare at us, in our space. I turned my back to him and he continued to glare and smirk. I guess that he decided to leave because we wouldn’t engage him. What a bullying, frightened little man he was.

We bought our seafood and left. The crawfish boil was delicious as was the air fried stripped bass. Sweet justice for putting up with one of God’s troubled children.

With the governor removing some restrictions my doctor is now able to perform my needed surgeries. I’m scheduled for next Wednesday for a cardiac cath and to have an ICD implanted. An ICD is a hybrid pacemaker/defibrillator device.

I’m relieved to finally be able to get these procedures. Under pandemic rules and to keep hospitals from being overloaded these procedures were deemed as elective. I have a long list of symptoms that would be an emergency room visit. I’ve been on restricted activities since February as my heart is functioning at 30% EF. The meds to strengthen my heart causes hypotension with my BP dropping to 80/40 at times. I have some really bad days. Good thing is that I can’t do housework or anything that causes exertion.

During this time I’ve enjoyed hammock time, reading and writing and FaceTime with family and friends. I miss everyone so much.

I am a little anxious about the procedures but I look forward to a pretty normal life after recovery. Recovery is about a month but it will be the same as I’ve had to live now with the limited activities. I’m looking forward to feeling better and living a more normal life.

I am happy that a room in memory care opened up for my mom two days after I was diagnosed with the heart condition. Doctors had told me to place her due to concerns over my health. I am physically unable to care for her and am so glad that she is in such a good place.

Unfortunately several people who hardly spent time with mom have told me that she doesn’t need to be there and that if I loved her I would keep her at home, no matter what. I try to think these folks mean well and just don’t understand. I encourage people to be supportive of folks even if you don’t agree with decisions being made. unless you have lived it and know all the details you shouldn’t make judgments. Life is hard enough as it is without the unneeded and unappreciated comments both to me, my family and my mothers community. For the record, I’m tired of being maligned for making the best decisions for all of us. Be kind.

As always, more later.

Pandemic – Alzheimer’s in the Family


This is my first blog since February 18. A lot has transpired since then. Mom celebrated her 84th birthday on February 27th and family and friends were there to help her celebrate. She received many cards, bouquets of flowers, and gifts. She received many word find and coloring books and a few books to read. Alas, she can no longer read books as she can’t follow the story and has to start over each time she picks the book up.

Amos and mom
Glenda and mom
Mom with Glenda’s family

We appreciate everyone who made Mom’s birthday a beautiful time for her.

On March 10, Dayspring started protective methods for visits to the facility and by the 14th all visits were suspended due to the COVID 19 virus. I am happy that they acted early to protect mom and the other residents. They put in protocols for staff and residents in an effort to prevent an outbreak and so far it has been working.

Pre Pandemic

I speak with Dayspring management and staff weekly for reports and updates. I also call and they put mom on the phone a couple of times a week. They help mom with the phone as she doesn’t remember how to use it.

Mom seems to be doing well and she tells me that she is in lockdown several times in each conversation. She says they take very good care of her and that she is happy there. We are fortunate to have found this wonderful facility.

One word of advice: don’t phone mom during bingo. If she’s winning she’ll be a little short and want to get off the phone to get back to her game. She loves bingo.

Pre pandemic

Just before Easter I received a phone call from the activities director at Dayspring. Mom had participated in an Easter art project and she wanted permission to post it on the social media page. I gave permission. She then went on to say that mom had asked her that morning if she was tired. When she responded that she was tired, mom said, “Sit down and rest, I’ll take care if things.” Mom then rounded up several of the women, sat them down and started reading the newspaper to them. She kept them occupied for a while by reading the front page over and over. It didn’t matter because they are in the memory care unit and just like mom, each time she read it, it was all new to them. It was a sweet story.

I love you to the moon and back.

Life during lockdown and stay at home orders is very difficult and necessary to protect life and our loved ones. I’m still struggling with heart issues with an EF function of 30% and a wildly ranging blood pressure of 79/40 to 130/79. When it’s low I get dizzy and almost black out. Meds are being adjusted and changed trying to stabilize me and help my heart pump until I can have the next procedure. This will not happen unless COVID restrictions are released or I am taken in through the ER. Today doctors ruled out any problems with my lungs. It is a waiting game.

At the hospital today.

I’m not used to living life with so many restrictions due to both health and the pandemic. I do know that all this will eventually pass. I’ll be glad when it does. I miss my family and friends tremendously.

As always, more later.

Restrictions- Alzheimer’s in the Family


This is my first blog since 2/18/2020. Since then mom has her 84th birthday and her facility has been locked down to protect the residents from COVID-19. Our family also lost a dear cousin, Kim, after a valiant fight with cancer. These are trying times.

Mom has continued to decline since about mid February. She is more frail and her mind is so confused. We knew that the plateau wouldn’t last but I treasure the memories that we made during that time.

Several family members visited with us for her birthday on February 27th. We had a great time with her. Spring cupcakes, bouquets of flowers plus gifts and cards. Thanks to Amos, Glenda, Kathy (and kids) for making her day special. Thank you to all her friends and family for sending the cards and packages. She reads the cards over and over and smiles. Any kind gesture is so appreciated.

Queen for the day

After everyone left, mom and I were visiting in her room. She asked me where Tom was and how he was doing. I didn’t expect that question as she had been remembering that he passed. I told her that he died over 3 years ago and she looked confused and then she just sobbed and sobbed. In the future I will tell her a fiblet, that he is in Myrtle Beach. She doesn’t need to grieve over and over because she doesn’t remember. It’s so heartbreaking.

Glenda and mom
Amos and mom
Glenda and family with mom

I have been visiting mom at least twice a week since we moved her in. The visit after her birthday I noticed that she had picked large sores on her legs. Many Alzheimer’s patients pick their skin and mom has done this for 2+ years. When she is awake you can redirect by giving her a word find book and pencil or other busy activity things but at night, when she picks in her sleep, there is nothing you can do. There is no treatment for skin picking. I talked to the unit manager and they had already called the doctor in to treat the sores. They saw them at bath time and immediately called the doctor. They take such good care of her there. Another good thing is that she hasn’t picked her arms in a long time so her arms have healed, even where she developed callouses from her picking.

On my visit on March 11th, last week, facility management was enacting safety measures due to the COVID-19 or Coronavirus pandemic. They limited visitation to hours 1-3 pm and 6-8 pm, the main door was locked and you had to be buzzed in and register at the door. The director told me to call before coming as that was subject to change. By Saturday I received a call that the facility was in lockdown until further notice. They explained everything to me and I’m satisfied with their proactive stance to protect the residents.

If that virus got into that facility it would be a death sentence. Sad to say. We can telephone and talk to mom as much as we would like. The most important thing is that my mom remains safe and cared for.

One thing that is interesting and frustrating for me is the number of people who are upset and angry about being inconvenienced and people who think this virus is a hoax. It isn’t a hoax and I prefer that extreme caution be taken to protect my mom and other frail and compromised people. It’s time to stop being selfish and care about others. It isn’t rocket science.

On my last visit mom told me that she liked it at Dayspring and the people were nice but she was ready to go home. I told her that she had to stay there as I couldn’t care for her anymore because of my health. She told me to give her the car keys and she would drive home and that she could take care of herself. I told her she wasn’t allowed to drive or live alone anymore. She got angry and asked who told me that. I told her that her doctors had all told us that back in June. After some discussion she settled down and forgot about going home. It’s so sad to see her on this downward spiral.

We received news last week that mom was finally approved for assistance. Over the last 8 months we had been turned down twice. The lesson here is to not give up. Apparently the third time is a charm and it doesn’t hurt to have a great caseworker like mom’s. She was awesome in helping me navigate the confusing red tape of the healthcare bureaucracy in this country. I thank her from the bottom of my heart.

We continue to play this one day at a time. I keep in touch by phone and talking with her, her caregivers and the director. They could be in lockdown for 8-10 weeks. It’s necessary for their safety. I can live with that and I just ask that folks be patient and kind as we maneuver through these times.

More later.


Good Times – Alzheimer’s in the Family

Mom continues to do well in memory care. The memory therapy is helping her to somewhat maintain where she is and that is a blessing. She still has good memory days and bad but she is so much happier and more engaged. The following pictures are a picture of her before going to memory care and a current picture in memory care. The difference is astounding.

Mom is engaged in exercise and activities everyday. While at home she would go a few days without speaking and would show no interest in any activity. I couldn’t even get her out of the house. At memory care she has made friends and has even gone on outings. She went to a Valentines social at UNCW and I understand that she was the belle of the ball. She danced and had a great time and as she said, “I didn’t bring a man home with me. I don’t need no man.” She evidently danced with other women.

I had written that the facility brought in a piano for mom. As of yesterday she has not played it. Staff is still working with her so I know that one of these days I’ll visit and she will play for me again. She has been coloring again and making beautiful pictures. She asked me to get one framed, saying it’s her favorite. There is night and day difference since she went into memory care.

Mom has had several visitors and we are grateful for that. Thank you to all who are signing and dating her book. It helps her remember her visitors. She received several Valentines cards and a teddy bear. Jeremi and the girls brought her a balloon and a bouquet of flowers. Mom grinned from ear to ear when we went through the cards. She likes to be remembered.

We are still trying to identify who brought her the throws, including the beautifully embroidered one. If you know who brought them to her, please let me know. It would also be nice to know who brought her the new teddy bear. I will write the names and the gift in her book so she can remember.

Some of you know that my dear cousin and lifelong friend, Charles, died unexpectedly. We have chosen not to tell mom as it would set her back. I do ask that those of you who visit, please do not tell her. It will cause her to grieve over and over and will most likely set her back and she may not recover. That’s the nature of Alzheimer’s disease. Please honor this with her. Thank you.

The Alzheimer’s journey is a long one. I am so grateful to have the good memories with mom now. Every time we visit she hugs me and tells me she loves me. These are special times with her. She has gone from existing to having a real life now. She is happy and so well cared for by an excellent staff. While I coordinate her care and take care of her business, I have become her daughter again.

I’ve also been able to concentrate on my health and getting better. I was diagnosed with left branch bundle block. It was evidently caused by heart failure as my heart is functioning at 30%. They are still performing test to see why this is happening as it was sudden onset. At least mom is in a safe place while we address my new health issues and no matter what happens to me, she is safe and will have continuing care. What a relief.

As always, more later.

Divine Intervention- Alzheimer’s in the Family


Mom continues to do great in memory care. She is more and more alert even though her memory continues to decline. We visit often and each time she is smiling and happy. The staff tells us how well she’s doing and says Miss Joyce is so sweet.

Mom is happy with her hairstylist at the facility. She has a standing appointment at 9 AM on Thursdays. She doesn’t remember but staff makes sure she gets there at the right time. Mom enjoys the food and is eating well.

I ask mom about her activities and she says she doesn’t do any. She just doesn’t remember. She enjoys group exercise every morning and she is dancing again. It’s a beautiful thing to witness. She is playing bingo a couple of days a week and coloring and other activities. They take her to devotions in the assisted living part each morning. She has many new friends. Management knew that she use to play the piano so yesterday they brought a piano to her unit and they are encouraging her to play. She absolutely couldn’t be in a better place.

Mom is having many visitors, which we appreciate. We do ask that you sign and date the faith book in her room so she can remember that you went. It’s important for her as she can’t remember on her own. When she mentions that so and so hasn’t visited it’s easy to show her in the book and helps her remember. So, please sign and date when you go.

My daughter and granddaughters and I visited mom on Wednesday, 1/29. The girls were very active and mom thoroughly enjoyed the visit. Mom played simple games with them and there was a lot of fun and laughter.

Her minister and friends brought mom a recliner and a tv for her room. We appreciate it and mom enjoys the recliner but doesn’t remember how to use the remote control. It’s a good thing as we don’t want a tv to keep her isolated in her room. Staff, doctors and family are encouraging her to be out and socializing as it helps keep her alert. Someone dropped off some lovely throws, one of which was monogrammed. We would really like to know who did this kind act. Mom can’t tell us as she does not remember. So if you did this, please let me know. Thanks.

Mom told me that Bobby H. brought her the recliner and TV. Mr. Bobby has been deceased many years. I talked to her about it and she insisted that Bobby brought them. I asked if it could have been Larry, his son. She looked puzzled for a minute and then remembered and said it was Larry. Alzheimer’s disease robs one of so much.

One of the ladies in the unit use to be a major shag dancer. Staff asked me if I would mind if this person taught mom to shag. Now, another resident is teaching mom so that she has a dance partner. So cool. Mom has been clogging and teaching others. You haven’t lived until you see several people with walkers smiling and dancing to music. Who knew she would ever be able to do this again. It makes my heart happy.

My son and his family visited mom over the weekend. Mom engaged and played I Spy with the boys and find the letter. They colored together. I have to remind everyone that mom has been so withdrawn over the past few years. Not interacting. She didn’t want to do anything or leave her house. Over the last 8 months she would go days without speaking. There has been a miraculous change in her since entering memory care. What a blessing.

Yesterday I visited mom. Glenda, Eugene, Ron and Kai also visited. Ron and Kai are here from Norway for a two week visit. Mom remembered everyone and we visited in the living room area and made a day of it. It was a fun and exhausting day. Mom thoroughly enjoyed reminiscing with them. Happy day.

And now to address some issues. If anyone wants to do anything for mom I would appreciate a phone call or text. While it’s nice that people love mom enough to do things for her, it needs to be coordinated. Please don’t just assume that it’s ok to do xyz as mom does have a care plan that was approved by staff, doctors and family to best fit mom’s needs. Staff cannot discuss that with anyone except immediate family. While there are rules that are facility approved, Mom’s care plan may exclude some of those things. Ask me. I can tell you.

I have also been asked by some to put them on the list to take mom out of the facility. The answer is no. Please stop asking. Only her immediate family are allowed and I don’t anticipate this changing. There are too many issues to deal with in taking her out and the risks are too great to her safety and well being.

Some are insisting that mom doesn’t need to be in memory care and that I’m not doing all I can to keep her home. Please stop tearing me and my family down to her community. It’s understandable to be in denial about her condition, especially if one only spends an hour with her every three or four weeks. This journey is hard enough without the negativity. If you can’t be supportive, just stay quiet.

Again, thanks to everyone for their well wishes. It’s much appreciated. I am going to concentrate on the positive and dismiss the negative. In this life, most of us are doing the very best that we can. That’s a fact.

I will be spending 4 hours at the hospital on Thursday as they try to determine what is going on with my heart. Two doctors think it may have been caused by the stress that I’ve been living with and may be reversible. We will know more after these test. I will say that with 3 weeks of sleeping through the night I have been feeling some better.

As always, more later.

Memory Care – Alzheimer’s in the Family


Mom went into memory care nine days ago. Things went so well that I didn’t wait the recommended ten days to visit. I went yesterday, eight days since admission. I had been getting updates from the unit manager about how well things were going.

Mom has been making new friends, participating in activities, and has been very cooperative with her care givers. Each of the staff told me how sweet Miss Joyce is. Mom tells me the staff is very nice and the place is very clean, and has really good food. She says that she feels safe there. In conversation it came out that, although she didn’t want to leave her home, she wasn’t feeling safe there.

Mom is helping residents who are further along in their dementia/Alzheimer’s Disease. I believe this gives her purpose and makes her happy. She now admits to having Alzheimer’s but says her mind is clear as a bell, unlike some residents who have,”lost their minds.” She remarked about how sad that was.

We had the same conversations over and over but mom was engaging with me, something she hasn’t done for many months. She would ask friends what their name was again and then she introduced me as her daughter. One of the ladies looked mom in the eye and said she’s beautiful, then she smiled at me. It was a beautiful experience to be there and interacting with mom and her friends.

There are 28 people in the memory care unit and only four are men. It is a quiet place and the caregivers are kind and have much needed patience with the residents. Mom already has favorites in the unit, both residents and staff. She thanked me for placing her in a very nice facility. I really cannot ask for more.

We will continue to visit and I encourage her friends and family to visit when they can. There is a faith book in her room that you can sign and write a note. It will help her know that you came when she doesn’t remember. If anyone would like to send her something, she goes through word find books rapidly. They can be found at the dollar store. Just write her name on it. She received a card from Mary and it was the first thing she showed me. Thanks Mary, it means a lot.

That’s it for now. We appreciate all the support and we’ll wishes. More later!

Changes – Alzheimer’s in the Family


Last Monday the TB test was read and is negative. We left the beach and went back to Newton Grove that afternoon. Mom was a little angry with me but I really didn’t know why. She seemed indifferent about being back at her home .

On Tuesday Glenda and Eugene stayed with mom so that I could pick up her FL2 form from her doctor. I really appreciate their help and support during this journey. I left the doctor’s office and went to Day Spring to complete almost 3 hours of admittance paperwork and to see mom’s room.

Everything went well and on Wednesday, after mom’s hair appointment, I took her to Smithfield’s BBQ (her favorite restaurant). We then left for Day Spring. I didn’t tell mom where we were going until we were on the way. I had agonized about telling her because she just wants to stay at home.

My voice trembled and tears filled my eyes as I told her that I could no longer care for her and keep her safe. I told her that it was an honor and privilege to care for her and that I loved her very much.

In the moment of lucidity she replied that she understood and that she loved me and she would adapt. Wow. She was matter of fact, no tears and full of acceptance. Prayers were answered. We talked about the place and how I would take care of her house and she was completely ok.

When we got to Day Spring, Ray was there to help us. He knew I was moving her in alone and he was simply there to help. It gave me such a sense of relief. It was good to have his support.

The director came out to greet mom. She had come to Myrtle Beach to do mom’s intake the previous Thursday but mom didn’t remember her. Mom did, however, hug her neck. We took mom in and she commented on how nice the place was. She was very animated and happy.

When we got to her room we discovered that her roommate was someone that went to school with her at Westbrook and mom has known most of her life. They had an emotional reunion while I set up moms side of the room. Clothes and books put away, feminine comforter and shams for her bed and heart garland and pix for her wall. Unfortunately, I didn’t get any pictures while there.

While setting up the room Ray and I noticed that my hands were trembling terribly. I guess it was all the anxiety of placing mom coming to a head. I didn’t stop trembling until later in the evening.

Mom was such a social butterfly and making friends. It was totally out of character for her. She was ready for us to leave so she could visit with her new friends. She said, “Just come see me sometime.” Then she was engaging with her new best buds. The move in could not have been any better.

I have not visited since move in day. I was advised to wait at least 10 days so she could settle in. I have called and talked with the memory unit manager and she assures me that Miss Joyce is doing great and engaged with new friends and participating in activities. I find this simply amazing as she has been so introverted over the last year and showed no interest in anything. I consider it divine intervention. All this reinforces that the decision to place her was the absolute right one. She is flourishing.

In the meantime I have slept in my own bed for the first time in over 8 months. I’ve slept from 9 pm to 9 am. I’m feeling some better physically. I start my doctor appointments on Wednesday to figure out what is going on with my heart and other issues. I’m hopeful that these issues are reversible with the major stressors removed.

I’m in the process of adjusting to yet another new normal. Hopefully one with a lot less stress.

Also, I was asked to tell folks that if you send cards to mom, please don’t send cash or checks, just cards. Also, we are asking folks not to visit before next weekend so that mom can settle in. We thank you all for your love and care.

More later.


The Time is Nigh – Alzheimer’s in the Family

We have been at Myrtle Beach since 12/27. It has been quiet and mom has been on a plateau since her hospital stay. She is physically doing much better. Mentally she has become worse since Thursday. There is a notable decline. She is back in 2001 and she is very confused.

Our home health care provider (hhcp) started last Monday and she is great. Mom thinks she is sweet. Elisa is coming Monday, Wednesday and Friday for 5 hours. This has allowed me to get out of the house to meet friends, run errands and go to Urgent Care. She actually got mom to start a painting of bluebirds and trees and they made friendship bracelets. Mom hasn’t done anything like that for months. She won’t even attempt it with me. New face = new person to please.

When I returned on Friday, Elisa talked with me privately about mom’s mental decline over the past two days. She had a hard time with her as she went to a dark place about my father and wouldn’t redirect. Elisa eventually took her out to the patio in an attempt to change the mindset. Mom was and is in victim mode again. Sad to say.

Tommy, mom’s brother, and David came to visit and spent an afternoon with us. It was a good visit but mom seemed lost. She didn’t remember that Gayle had died and asked Tommy about her. We have decided to tell her a fiblet. We will tell her that Gayle is in Michigan, which she is, and avoid her grieving afresh each time she learns that her sister has passed.

This week I got a call from the memory care facility. The director came on Thursday to do the intake paperwork. They have a bed for mom. The two ahead of her are male and a female bed was open. We got mom’s TB test today and I pick up the FL2 on Tuesday and hope to move mom in by Thursday.

This couldn’t have come at a better time. I’ve been experiencing extreme fatigue and have no energy. Ilona kept mom for me to go to urgent care on Sunday. I had my first ever abnormal ekg. I was diagnosed with left branch bundle block but the doctor said that wouldn’t cause the fatigue. The bloodwork and ekg results were forwarded to my Primary care physician. I am being referred to a cardiologist and internist. Hopefully, we will get to the bottom of it soon. It just reinforces what 3 of mom’s doctors and my doctor said about placing my mom and preserving my health.

I had included in an earlier blog that 40% of caregivers die before their patient. That figure has been recently updated to read 60%. It’s time for placement and I’m so happy mom is going to a 4 out of 4 star facility with no deficiencies in over 10 years. One of the best in NC. They also have memory care therapy, which is very important.

I have mixed emotions about placing mom but I know in my heart, mind and soul that it is best for both of us. I have worried that something would happen to me and mom would become a ward of the state. Not a good thing. Having her placed and the funding in place will prevent that from happening.

This journey is long and hard. I’ve come to realize that when one does their very best, that’s all that one can do. I have learned not to beat myself up over decisions made. The priority is keeping mom safe, secure and cared for.

As always, more later.


What Day is This? Alzheimer’s in the Family

We went to Newton Grove on 12/20 and stayed until 12/22. We went to Oak Grove Church on Sunday and then to Smithfield’s BBQ for lunch with friends. Everyone was so excited to see mom and she received many good hugs. After lunch we visited with Zona, mom’s lifelong friend for most of the afternoon. It was so good watching them interact.

When we got to mom’s after visiting Zona, I saw that a panel of the storage building was pulled out enough for a person to get through. I went out there and got spooked so I called Larry to come over before opening the building. We discovered that someone had been in and drawers to dressers had been left open. We closed the panel and that was that. I might add that I awoke around 2am to the sound of metal scraping. I didn’t see anything and went back to bed. Now we know what I heard. It’s a sad state in this country when people violate your space when you are home.

After Larry left, mom and I went to my daughter, Jeremi’s, house to stay through Christmas. We had a wonderful visit and mom did pretty well. Mom was taking the travel really well. She retreated into her books but she was in the room with us. She got showered with a lot of love.

I made sugar cookies with the girls, which was a huge deal for all of us. As we were making the cookies Ansley said,”I haven’t made cookies since Memaw died.” She then asked if I was making new memories with her. She is 6 years old. We talked about Memaw several times during our stay. Ansley just misses her so much. Hope is missed by everyone as she was such a dear soul.

My son, Amos and his family came over on Christmas Day and we had a lovely time. Good fellowship and lots of good hugs. Overall it was a good holiday.

Mom and I went to her house on the 26th and visited with family and friends. We came back to the beach on the 27th. It’s good to be back at the beach. The parts have come in to fix my storm door that was broken in a breakin attempt. I will install the parts tomorrow.

It has been quiet at the beach and we will be spending the bulk of our time here while we wait for her space in memory care. Today I hired a home health aid who will start on Monday for three days a week. I’m looking forward to the help. Of late I’ve felt depleted and have been suffering from some depression. I’ve been the only caregiver 24/7 for the last 7 months. I’m just not able to do it much longer. The memory care facility believes they will have an opening for mom soon. I hope they do.

Mom does not want to go but it is beyond me to keep her safe. That said, she doesn’t listen to me like she will anyone else. It’s normal but hard. This journey is full of ups and downs. It doesn’t matter how much you love someone, the reality is that you must love them enough to do what is right for them. Sometimes that includes placement.

More later.

Tis the Season – Alzheimer’s in the Family


Mom had a recheck with her PCP and Cardiologist within a week of being released from the hospital. We reviewed new medications and mom was completely checked out including EKGs and bloodwork. Her cardiologist agrees that she did not have a heart attack but the higher Troponin levels were due to her acute kidney failure at admission. Mom seems to be doing better physically but she continues to be extremely confused.

The cardiologist took a long time with us and actually commented on the good care that I was giving mom. It was good to hear as the last several weeks had been so hard. Validation, I’ll take it when I can get it. So far all of our doctors have been extremely supportive of our care plans and I do appreciate that.

Mom has been eating more due to medications to stimulate her appetite. She has leveled off at 152 pounds and we hope to maintain this weight. I’m still having difficulty in getting her to drink enough and have been adding liquids to foods and freezing Pedialyte and probiotic juices to keep her hydrated. We don’t want to take another trip to the hospital due to dehydration.

Mom has been feeling so much better after getting hydrated at the hospital. Now that she is eating more she is not as physically depressed. She says she is getting well. She still retreats into her word find books, her safe place, and it’s hard to get her to talk or interact with me. She has also been a lot easier to deal with and she doesn’t seem to be as angry with me. I’m thankful for that gift.

She also thinks she is superwoman as she is feeling better. Yesterday she quickly hopped up to Rollate to the kitchen and came very close to a spectacular fall. I couldn’t get to her but she recovered and didn’t splat. We had a discussion about her continued issue with being a fall risk. She is stronger but she is wobbly because of many factors, including her spatial vision being off due to the disease. She promised to be more careful and she will until she forgets.

We came back to the beach on 12/8 and it has been so pleasant here. Mom seems content and I’ve engaged her in ordering Christmas gifts for the grands. She was very animated and happy. She actually put a couple of ornaments on the tree before she sat in her chair to supervise. She has been smiling more too. We have been creating beautiful memories with my mom. I’m grateful for this. Precious time.

On Tuesday 12/10 I got my 1st full day break in over 6 months. Ilona kept mom and Ray took me to Charleston to see the Mary Whyte, We the People art exhibit. We toured the battery later. It was beautiful and all the old homes were decorated for Christmas. We ate at Fleet Landing, over the water. It was a wonderful day and I came home recharged.

It was a good thing I was recharged because early last Wednesday morning there was a bumping around the back bedroom windows. I turned on the lights to check it out and the sounds stopped. I kept my phone in my hand and went back to bed. About 30 minutes later someone was trying to come through my side door. The storm door was open and it sounded like someone was trying to shoulder through the steel door.

I calmly called 911. The dispatcher kept me on the line until the police came. They arrived in 2 minutes. We ended up with 3 police cars and 5 policemen. They secured my home and filed a report. I have never had this type of problem at the cottage so I was a little unnerved. My storm door was broken but that is the extent of the damage. It concerns me that we were home when this occurred. Mom, bless her, slept through the whole ordeal. That is considered a blessing.

Wednesday was not a good day. Several things happened that exponentially increased my stress level. I’m just mentioning it to say that life continues and even though you think you can’t take anymore, somehow you can and you push through.

I’ve have been dealing with a few days of second guessing, over thinking and depression. I understand that it goes along with having Alzheimer’s in the Family. When I brought mom home from the hospital she demanded that I take her to her home and leave her. She was ugly about it. She absolutely can’t be left alone for any period of time. I finally told her that her disease didn’t just affect her, that it affects the whole family. I told her that we were stepping up to care for her and do what’s best for her. I told her the truth about sacrifices being made. I’m glad we went there because she has changed her attitude and has become happier and more cooperative. I hope it lasts.

We are on a plateau right now and we take it one day at a time. She will crash again as that is how this disease works. I talked with the memory care facility and they believe they will have space for her in January. They’ve asked for a list of her favorite music as part of the therapy is music therapy. We hope that they can get her back to playing the piano and singing. They are going to work with her to see if they can interest her in painting again. She has quit all these things and shows no interest.

This is a long journey. We take each day as it presents itself. I am thankful for family and friends who are traveling this road with us. A special thanks to Martha for sending mom the Gladly the Cross Eyed Angel. She loves it.

More later.

Tis the Season -Alzheimer’s in the Family


Mom has been doing better since her hospital stay. We’ve had follow ups with her cardiologist and PCP. They say she is doing okay and that I’m doing a good job caring for her.

Her hospital records indicated that mom was in acute kidney failure when admitted. The records listed Alzheimer’s and A-Fib as 2 and 3 in order of illness. There were 12 other issues that were also being treated.

We have 3 new medications. One is given only when her heart rate exceeds 100. Metoprolol is given as needed. She gets Megace twice a day to stimulate appetite and Remeron at bedtime which helps her sleep but also increases her appetite. Win win.

Since starting the Remeron mom has slept through the night. Hallelujah! She is more rested and she is eating more. The goal is to stabilize her weight where it is. I am hopeful. We still have difficulty getting her to drink enough. If she dehydrates again it’s another trip to the hospital. All the doctors have told us that if she wasn’t overweight at the start of this that we would already have lost her. It’s good to have some reserves. Mom has gone from 220 to 154 since last January.

Mom continues to be extremely confused. She has lost the last 7 months of her life. She tells doctors that she lives alone and takes care of all her business. She told them she was visiting me for Christmas and got sick. None of this is true. While she is feeling better after her hospital stay, she is very tired.

We are taking one day at a time. It is all we can do. My goal is to keep mom safe and hydrated. This is a huge task. I also hope to get her placed in memory care before we have major issues at home. Every day is a challenge. I am suffering from burnout and it’s affecting my health. I do get breaks here and there but not enough to recharge.

I hope to bring in home health for 3 days a week for 4 or 5 hours each day. I’m screening people now. It’s a process to find the right person. Hopefully mom will accept their help. I have business issues that have been languishing and also need to get Tom’s estate finalized. It’s been over three years since he past. Most days I feel stressed at all of the responsibilities. Sometimes I just have to let things slide. There is only one of me.

Before I close I’d like to touch on the feelings of guilt. I try hard not to feel guilty about choices. Hell, I’ve been in therapy to learn how to not feel guilty. That said, mom always said she wants to stay at home. Not possible. She says that I might as well put her in prison when I just keep her safe. Examples: she can’t take her Rollator up and down steps. She can’t walk without assistance and she tries. She also can’t handle knives or other sharp objects. I am conflicted but do not feel guilty for the choices I have to make.

Making the choice for memory care was hard. Mom will resist but she will get stimulation and be in a program that will help with her situation. The one I’ve chosen also does music therapy as it’s very productive for Alzheimer’s patients. They’ve already asked for a list of what she likes to listen to.

Some have said that I can do all this at home. It doesn’t work that way. Mom will not listen to me. Many days she won’t communicate with me. She tries to please others and authority figures. Her life will be richer than what I can provide. I can go back to being her daughter instead of a 24/7 caregiver. We both can live a more meaningful life.

I guess what I’m trying to convey is this: many love my mother. Many spend about 15 minutes with her about once a month. Some of these people keep telling me I need to keep her in Newton Grove or how hurt she would be if I do xyz. While I appreciate that you love my mom, just stop it. It isn’t your life or your decisions to make. It really doesn’t impact you in any way and I don’t succumb to guilt.

Rest assured that I’m doing the very best for my mom. I am driven simply to make decisions based on her safety and enrichment. I love her dearly and seek only the best for her. Sometimes that doesn’t include keeping her at home.

More later.

Holidays and Hospitals – Alzheimer’s in the Family


Thanksgiving was a beautiful day here. Lots of southern farm table traditional foods with my personal twist. Good company with Ilona, James and Richard stopping by for a plate. It was a feast and mom actually said the blessing and participated in the ” what am I thankful for” discussion. She didn’t eat much and retreated to her chair while the rest of us visited. It was the best day.

Friday morning I went to wake mom around 9:45 AM. She was lying on top of the covers in a fetal position and she was moaning. Her voice was a whisper when I tried to check her out. I couldn’t sit her up nor get her up. Her vital signs would not register and I tried 3 times. I immediately called 911.

Rescue arrived in 7 minutes and in the meantime dispatch told me what to do until they got here. Travis and Kyle, with HCFR, were wonderful and got her transported to Grand Strand Hospital ER. I was afraid that she was dying.

When I went back to the ER mom had several professionals working on her. Many tests were run while they provided supportive care. Early on they thought mom had a mild heart attack. Her heart enzyme Troponin was elevated which indicated a heart attack. She had cardiac and several other consults. By Saturday they decided it wasn’t a heart attack but her organs had begun to shut down which caused the Troponin to leak into the blood stream.

We had struggled to get mom to eat and drink for several weeks. All her doctors were aware. Her collapse was due to dehydration and malnutrition. When she was admitted to the hospital her kidneys were badly affected. The supportive therapy, this time, is reversing the adverse affects.

Amos and Jeremi, my kids, drove down Friday to provide support. It was comforting to have them here. We had some good discussions, which were really needed. I appreciate them so much.

Saturday mom was more alert, probably because Amos and Jeremi were here (and she’d had a few bags of fluids, etc.) She introduced me to her doctor as her mom. She couldn’t get the right word and that doctor had been in several times before. At a later time she introduced her grandchildren as her niece and nephew. I believe she knew who they were but she couldn’t get the right word.

By Sunday mom was feeling better and alert. She had cardiac, physical therapy, speech, nutrition and other consults. Many were involved in her care. Each and every one of them were phenomenal.

Mom’s best friend of 69 years, her minister and his wife drove 3 hours to see her on Sunday afternoon. They brought a beautiful flower arrangement from our friend, Mary. Mom had a good visit and was animated. She was extremely exhausted when they left.

On Monday two doctors took me outside of the room to speak with me. One doctor advised me on getting home health aids until we can get her placed. He told me to spend every bit of her money on help.

He also told me my life was going to get exponentially harder. He said hers wouldn’t because she wouldn’t remember. He was a kind soul and at the end he gave me his card and told me to call him anytime day or night with concerns. Wow. I cried.

The other doctor also expressed similar concerns and paged and expedited different orders when mom was becoming agitated. The professionals at Grand Strand are a step above the rest. They got mom to eat and drink and they handled her beautifully.

Mom got a total of 8 bags of fluids. She also received a bag of broad spectrum antibiotics as they thought she had an underlying infection due to her skin picking. She was released Monday evening after 6:30PM and we were home by 7 PM.

She has been a little more confused than normal. She couldn’t understand why we brought her all the way from Newton Grove to a Myrtle Beach hospital. There was no way to explain it so that she would understand. It’s ok. It is what it is.

She is also angry with me because I won’t take her back to Newton Grove and let her live alone with people just checking in on her. She will never understand her situation and can’t remember that the doctor has ruled that she can’t live alone nor drive. It’s frustrating. She told one of the doctors that she lives alone and was visiting me when she got sick. “Ain’t that a note!”

Today she asked for her checkbook. She hasn’t been in control of her finances since October 2018. I let her see it and she wanted to write me a check to pay for my “troubles.” I told her again that she can’t write checks and that her money could only be used for her expenses at home and her health care. So here we sit with her angry again.

I would be lying if I told you that this journey isn’t excruciatingly hard. Watching your loved one disappear into an abyss slowly and piece by piece is heart breaking. This horrid disease affects the patient, the family and friends. The kicker is knowing that no matter the sacrifices and actions that are taken, the outcome will be the same.

Thank you to all who are following this end of life journey. I hope it helps in some way.

More later.

Thanksgiving With -Alzheimer’s in the Family


What a week. My cousin, Richard, drove in to see mom. A 10 hour drive from Memphis. Richard is Aunt Gayle’s son. Aunt Gayle is mom’s younger sister who passed with complications of Alzheimer’s Disease the first of June.

From speaking with her immediate family I have discovered that their journeys with this disease are very similar.

Mom remembered Richard even though she was having a very bad day. She still isn’t really eating and she is very weak and wobbly on her feet. I think we are nearing a time to move up to a wheelchair. She is in constant risk of falling.

Mom did enjoy Richard’s visit and he was so good with her. We’re glad that he came.

Mom is still having a bad day today. Still not eating and a new twist, she hallucinated today. She saw butterflies coming out of the wall in her bedroom. She said she wasn’t afraid but it scared me. None of the meds that she is on cause hallucinations.

I called her primary care physician (PCP) and they returned the call promptly. They said it is most likely her advanced Alzheimer’s but that for piece of mind I could take her to the ER. She said they might check for an infection such as a UTI but most likely, with her history, they probably would not do anything. My support group indicated the same. I did get tips on how to handle hallucinations if we have them in the future.

We are still going to try to have the Thanksgiving celebration here tomorrow afternoon. I don’t know if we will make it to the family celebration on Saturday. We will see how she is doing before we make the trip.

I have been emotional today, realizing that this is most likely our last Thanksgiving with my mom. The way she is declining I don’t know if she will be here for Christmas. It’s heart breaking. We just do the best we can.

I don’t think we will have many more mobile days as mom really is having trouble walking with the Rollator. A wheelchair is next and there is a high likelihood that she will be bed bound in the not to distant future. I am hoping that a bed opens in memory care soon. She is almost at the point that I can’t keep her at home. I’m tired and I can’t keep her safe.

While all this is going on I do want to give thanks. Thankful to have this time with my mom. Thankful for my family and friends. Thankful for the life the universe has given me. Have a blessed Thanksgiving.

Withering Away – Alzheimer’s in the Family


We are back at Myrtle Beach as of Saturday afternoon. It has been a hectic few days. Mom is on the waiting list at Day Spring and there are only three ahead of her. That is good news.

We are waiting on the confirmation letter from social security before we can open an application for aid. This will be the second attempt and it takes weeks because of the bureaucracy. In the meantime if a room opens up it will be self pay until the applications is filed. We are hopeful.

Mom has lost 5.1 pounds in 8 days. Today she ate 1/2 serving of yogurt and 2 bites of a sandwich . She asked me to please not feed her anymore today. She just can’t eat. It’s sad to watch and be totally helpless to help her. This disease is devastating.

I got to take breaks on Saturday and Sunday nights thanks to Ilona taking care of mom so I could get a much needed rest. Thanks to Ray for the company and the movies. I appreciate both Ray and Ilona so much. My friends and family make this journey more tolerable.

I’ve been cooking for Thanksgiving today. We are having what I call an orphan holiday late lunch at my house, for people who can’t home or don’t have a home to go to. Mom has been instructing me about the food, but bless her, she can’t remember and can’t help. We laugh and carry on. We will be spending the weekend celebrating Thanksgiving with family.

I really don’t know why but today has been a weepy day for me. I’ve cried at the drop of a hat. Maybe I just need a cleansing cry. These days have happened every few weeks in this journey so I just go with it and then it passes.

So now for thoughts about action plans for both young and old. Trust me, if you do these things your family will have an easier time if one becomes incapacitated for any reason.

– make a living will and have it notarized and/or registered with the clerk of court

-create a durable power of attorney, if you have this in place your wishes can be legally followed

a. name someone you can trust and alternates as POA

b.covers medical, real estate, investments and other issues

c.use an attorney and have it filed with the clerk of court isn’t expensive

e.your family will be grateful

-create a list of assets: life insurance, financial accounts, real estate, jewelry, cars, anything of a positive value/include account numbers if applicable

-create a list of liabilities/bills/people you owe. Include account numbers and phone numbers

-get long term care insurance (if you are younger the premium is very low, if older it can be expensive) it will protect your assets if you become incapacitated

-avoid the mindset that it won’t happen to you or that you have “lot’s of time”

-if you notice a family member in decline don’t wait too long to intervene

I will be adding more to this list soon. It is really important to address these things to avoid delays and hardships in getting things that you need. While it will not remove stress it will reduce stress and frustrations to your loved ones when they are trying to help you.

My journey with mom has been stressful and frustrating because many of these things were not done. Also, in hindsight, she was making bad decisions for the last 10 years. It tells me that she was astute at hiding her fading memory. Unfortunately, doctors don’t make a diagnosis until they can no longer handle finances or get lost while driving. In my opinion, by this time your loved one has been in danger for way too long. This needs to change.

There will be more later. Have a wonderful Thanksgiving. We intend to here.

Patience, not necessarily a virtue- Alzheimer’s in the Family


We came back to mom’s house in Newton Grove on Sunday, November 17th. Mom was happy to be home. I paid bills and caught up things at her house. She sat in her chair and read the newspaper over and over with no communication.

Monday my daughter and grands came to see us. Ansley skipped school to come and it was a special day. Ansley is six and Hayden will be 2 next week. Hayden has been jibbering a lot but on this visit we could understand a lot more of what she said. When she got here she ran to mom calling Granny, Granny and she hugged her. Melted my heart. She also called me Grandi for the first time (that I could understand). So special.

On Tuesday the 19th we had an appointment with her neurologist in Raleigh. I knew it would be a difficult day when she came out in her pajamas. It’s always a sign of a challenging day when she’s not dressed when she leaves her room. I told her she needed to bathe and dress soon as we were going to her neurologist. She said she wasn’t going.

Zona, her best friend, came by for a while and I had to tell her we needed to get ready for an appointment in Raleigh. When she left we had to rush to get mom ready. It was too much. Mom needs to take her time because between the not eating and the A-Fib she simply needs a lot of time or it’s a disaster.

We did make it to the appointment and mom had lost over 18 pounds in 8 weeks. She had difficulty answering questions too. The doctor said she was in an extremely rapid decline. The doctor also talked with me about the high possibility that I will develop Alzheimer’s and that I should plan accordingly.

The visit was thorough and the doctor gave me the option of starting mom on Razadyne 2 mg once a day. The normal dose is 2 mg twice a day but due to mom’s sensitivity we are trying a very low dose. It doesn’t reverse damage but it can slow the progression of the disease. I told her we would try it. That was Tuesday and the doctor called it in to our pharmacy. As of close of business today, Thursday, Medicare has declined to cover it and the doctor and the pharmacy are appealing and trying to get it covered. Maybe it’s a sign that I need to say no.

I must share that on the way to Raleigh for the appointment mom was talking about many wrongs from her past and asking me if she is dying. I always tell her “not today, mom.”

Glenda, our cousin, came to help with mom on Wednesday. Glenda is one of those special people and she means so much to us. Eugene too! I left at 9:15 am to start all the memory care facility appointments that I had that day. It was a productive day and mom is on the waiting list at a 3 star facility in Harnett County.

One facility I visited that was recommended was a dump. Warehousing the elderly and dementia patients. They told me they had no deficiencies. NC has a website from the agency that licenses these facilities and the post deficiencies (problems) and fines and how the facility is rated. The highest rating is a 4. This facility had a 1 rating and several fines. So much for truthfulness. If you are looking for an adult home in N.C. just check here for information:

The last facility that I visited was beautiful and everyone seemed happy and well cared for. Staff answered all my questions and I was impressed and thought this is the one. I was told they had no deficiencies and they also had an open bed in memory care. I looked them up and they had a 2 rating and have had many violations since 2009, with the latest one in August 2019. All in the memory care unit. One incident ended in a death in 2017. This place is also a no.

I wonder if many folks don’t know about how to check out a facility. The place I just mentioned had massive fines and was forced to close for about a year. After reopening they are still unable to provide good care. The death was after they regrouped. They are still licensed in N.C. I don’t know how considering the extreme violations they have committed. Buyer beware.

That was the last appointment. I got home around 4:30 pm. I was physically and emotionally exhausted. I had many tears during the day. It is what it is. I thanked Glenda for all she does. I appreciate her so much. One of life’s blessings.

Shortly after Glenda left I got a call from Rolling Ridge Assisted Living. They had a bed for mom on December 1. It broke my heart to tell them that we had just found out that mom no longer qualifies for their facility. Rolling Ridge is a 4 star facility with no deficiencies for the past several years. The best of the best and in my mother’s community. Life is full of detours.

Tomorrow I am going to Day Spring in Wallace. They have a memory care unit, a 4 star rating and no deficiencies. They also have a long waiting list. It is a sister community to Rolling Ridge. I know that at the end of the day, mom will be on the waiting list. It’s worth waiting for a good fit and a great facility. I would also advise to beware of any memory unit that has an open bed. There is a shortage of these places and if there are openings, there is probably a reason that you shouldn’t put your loved one there.

Mom has barely eaten this week. Several days with 1/2 serving of yogurt, 2 bites of sweet potato, and nothing more. When she eats she says she is forcing it down for me. Her doctor says that at this point not to worry about what she eats or drinks and give her anything to get nutrition into her. I can’t even get her to eat her favorite ice cream. Ice cream. She is down to 154 pounds from 205 in May.

Her doctor also said that in this case it was good that mom was a little overweight at the onset of this disease. The organs in the body usually don’t shut down until the body gets to 80-90 pounds. That said, her A-Fib was probably caused by her lack of nutrition and rapid weight loss. The A-Fib will probably be her demise before the Alzheimer’s gets her. At times I think that it would be a blessing for her to go out before Alzheimer’s completely decimates her mind. This disease is so cruel. It robs the person and their family and friends of so much.

That’s it for now. There will be more later. Thanks for reading. I hope this blog helps someone.


Bureaucracy! – Alzheimer’s in the Family

After the complete bust on getting needed information on Wednesday, we had a quiet day at home on Thursday. Jackie cut and “twisted up” mom’s hair.

On the way over to the shop mom decided to take the Rollator up the steps instead of using the adjacent ramp. I guided her over to the ramp and she reluctantly used it. It was the second time that she made this choice. She looked beautiful after Jackie finished her magic. She said mom was pretty talkative, which she hasn’t been of late. Thank you Jackie for all that you do. We appreciate you.

Later in the afternoon, mom was visited by young cousins who rode over on their dirt bikes. Mom has known Landon since he was born 12 years ago. He has always called her Granny Joyce. She did not know who he was. In fact, she thought he was Aunt Brenda’s grandson. The boys didn’t stay long after that and I told them that it wasn’t personal, it was mom’s disease. They acted like their feelings were hurt. Too young to understand the ravages of dementia. I was sad for mom and for Landon.

Mom has been sleeping a lot over the last few days. Alzheimer’s experts say it is common in later stages of the disease. The brain needs sleep to heal but healing is impossible with Alzheimer’s. She is sleeping about 10 hours during the day. I offer meals when she is awake. Sometimes she eats and sometimes she doesn’t. She had gone from 205 pounds to 162 since June first. This too is part of the disease. Now, when she does attempt to eat, she pockets the food in her cheeks before she eventually swallows. There will come a time when she will be unable to swallow. Sad to say.

Mom’s BP is very low normal but the cardiologist said not to worry about the BP and to be concerned about her pulse rate. Her pulse is staying from 43 to 52. When it’s below 50 I’ve been instructed to withhold one of the heart meds until the pulse gets to 50 or above. Mom is not a surgical candidate so our only option is controlling the A-fib with meds. Nothing can be done about the 4 leaking heart valves. We do what we can.

Glenda came to stay with mom on Friday so that I could try again to get needed certified paperwork. This included driving to the Pitt County Courthouse (1.5 hours away), Social Security office in Fayetteville (1.5 hours from Greenville), then Clinton to cancel mom’s car insurance (40 minutes from the SS office). It was going to be a long day. Many thanks to Glenda for helping out. She and Eugene have been a Godsend. I appreciate them so much.

I arrived at the Pitt County Courthouse and went through security. The courthouse was extremely busy. I was directed to the office to get mom’s certified divorce papers and yet again was sent to the wrong office. Seems to be a theme in the wading through the bureaucracy. Good thing, the offices that I needed were all in this build, once I got to the right place. I was happy to leave with two certified copies. Happy Day!

I stopped at Office Depot and got copies of all files that I had to drop off at the Social Security office in Fayetteville. While in the office last week the Supervisor who helped us told me that I could drop them off or mail them. Dropping them off was supposed to get the approval process started a little quicker.

Well, that sounds easy enough, doesn’t it? Well, welcome to the bureaucracy. I drove from Greenville to Fayetteville for the folks at the SS office to refuse to take the paperwork. The Supervisor was on vacation and the professionals? in the office refused to take them. I asked to speak to his supervisor and he/she was out also. The security guard and others in the office said,”He never should have told you to drop them off.”

How did it become my problem when I did exactly how I was instructed? I went to the post office next door and handed the envelope to a gentleman who told me it would arrive at the SS office on Tuesday. I did thank the folks in the SS office for wasting my afternoon. They weren’t happy and neither was I. I will be writing complaint letters when mom gets her letter of approval, not before. I don’t want them to have any excuses for delaying or disapproving her application.

After finishing in Fayetteville I was off to mom’s insurance office in Clinton. In N.C. you have to go in and sign paperwork to cancel car insurance. I brought the power of attorney, which they copied, signed on the dotted line and voila the insurance is canceled. I’m finding that there are no shortcuts nor easy ways to handle things. This adds stress to the already stressful life of dealing with Alzheimer’s in the family. It should be easier and I will be addressing all this with the powers that be at a later date. A pissed off caregiver can become a

pissed off, loud mouthed advocate for change.

The chores were done for the day. I got to mom’s around 4pm. Glenda said the day went well and that mom had slept a lot. I sincerely thanked her for her help.

I fell asleep on the sofa around 8:15 PM and woke up at 10. I told mom that it was time for bed and she went without an argument. I slept until 7 am and still woke up tired. Mom got up around 8 am and got dressed for church (it’s Saturday) and she though it was 2001.

We got back to Myrtle Beach around 3pm. Mom does so much better here. She really does but she wants to be at her house, although at times she asks to go home when she is there.

Ilona kept mom for me to get out and I spent the night away. I slept straight through until 9:30 am. I feel the best I have in days. Rested. Mom got up at 10:45 and had some yogurt. She’s been asleep almost all day. Her pulse was 47 this morning so I stopped the metoprolol until it goes up to 50 or above. If it doesn’t go up it’s a call to the cardiologist and perhaps a trip to the ER.

This is our new normal. Full of stressors and small blessings. Each day is different and each day I look for the blessings. I appreciate my family, extended family and dear friends. I couldn’t do this without you. Thank you all.

More to follow!

Here, There, Everywhere – Alzheimer’s in the Family


We returned to my home in Myrtle Beach on Saturday. I was so happy to be home. Mom did not talk at all on the trip back. She did mention how quiet it is at my home. It is.

I did a lot of chores when I got home. I’m still trying to get things in place after the remodel and need a few minor odds and ends finished.

Saturday the lock box came for meds. It’s a godsend as mom was getting creative about accessing meds when she shouldn’t. The box holds 24 bottles and her weekly pill planner. No more accidents with the meds. Thank heavens.

Sunday, Ilona kept mom so that Ray and I could go to my dear friends’ wedding. Tracey Rae and Cary had been together for 10 years and decided to wed. They had a beautiful wedding on the beach followed by cocktails, dinner and dancing. What a wonderful thing to share with all of us. Tracey was a beautiful bride and I cried when Cary saw her and he had to wipe tears. Simply beautiful.

November 3rd was challenging and a day of remembering as it is my dearly departed brother’s birthday and Tom’s 3rd Anniversary of transitioning from this plane. Now I have a beautiful happy memory for this date. Thanks to Tracey Rae and Cary. Life goes on and it’s beautiful with those with whom you share life, love and care.

Monday was a day of chores. Mom was still not “dealing” with me. I ordered mom’s medication refills. Loaned Tom’s Raleigh bicycle to a friend in recovery so he would have transportation and ran errands, a few minutes at a time.

Tuesday the Lazy-boy recliner and rocker recliner were delivered. They were ordered 8 weeks ago. They were perfect and mom can get in and out of them much easier than the loveseat. The rocker recliner is hers. One good thing.

Today, we loaded up and came back to mom’s house. We stopped in Clinton to get a certified copy of her divorce decree. I had talked with Sampson County earlier and went to the office I was told. Wrong office. They sent me to the courthouse annex, again wrong place. They sent me to the Clerk of court’s office. I had to leave my cell in the car and go through security. The clerk of court pulled up mom’s records. Low and behold, the record belongs to Pitt County. I spent hours and got nothing I needed due to bad information.

I now have to go to Pitt County Clerk of Court to get the certified paperwork that mom needs for Social Security paperwork. I have about 25 days to get this information or start the process all over. This journey is difficult enough without all the wild goose chases that we’ve been sent on.

I have decided to hire an Elder Attorney to help us navigate this mess. Yes, it is a mess. It will take some of the stress off me and an Elder Attorney can guide us through and file needed paperwork so that mom gets the help she needs. It will be worth every penny and give me some relief.

This process should not be this difficult, but it is. Glenda will keep mom on Friday so that I can go to Greenville, 1.45 hours away to get certified copies that I need. I’ll drive back to mom’s and then drive 45 minutes to the Social Security office in Fayetteville to hand deliver the required documents. I have to do this because the Social Security requirements are time sensitive or we will have to start all over and assistance will be delayed. Welcome to the world of trying to get help for elderly with no assets. It’s hard and frustrating.

In the mean time, mom is still losing weight and will sometimes eat with prompting. At times she pouches the food in her cheeks and has trouble swallowing. It’s part of the disease. In my efforts to keep her safe, as her filters are gone and she sees no danger, she often is very angry with me. One day she told me she might as well be in prison because I keep her from doing what she wants. In this particular incident she was bypassing a ramp to walk up steps with her walker. It’s so hard. Especially when she gives me the silent treatment. I would much rather she yell and get angry like she does at times. She can go a week without speaking to me for some imaginary wrong that I’ve committed.

Updates coming so, again, more later.


Crap Show – Alzheimer’s in the Family

This has been an interesting week. It was good to be in Myrtle Beach, my home. Mom seemed to enjoy being there, even though she talked about staying in her home alone.

We got back to the beach on the 24th. Ilona’s birthday was on the 25th and we celebrated at PF Chang’s on Sunday the 27th. Ilona, James, Ray, mom and I had a good celebration and mom tried to follow the conversation. Over all it went okay getting her out of the house. Ilona kept mom for a couple of days so that I could get a break and have a semblance of a normal life. I am eternally grateful for her support and for Ray who has helped me so much. Don’t take good friends for granted. They are priceless.

Ray came by for a visit on Monday and mom became very animated around him. She told him that she was going to sell her home in Newton Grove and move in with me. Wow! That was a shocker. The problem with this is that the deed is in my and my children’s name since 2008. It was a little progress in the right direction though.

Mom was still not talking to me for whatever reason. Sometimes that goes on for a long periods of time. Intellectually I know it’s the Alzheimer’s but it is still humanly very hard.

We came back to her house on Thursday because we had an appointment with Social Security for SSI assistance today. Well, that certainly didn’t turn out well. I had to take mom because they don’t accept a durable power of attorney. It makes no sense that they will let someone diagnosed with dementia sign any darn legal document, but they will.

The following is extremely personal but I’m blogging in an effort to help folks through this process. The system will not help you and you must proceed with help of friends who have navigated the system before you and limited information that will be shared by agencies.

SSI requires that you apply for any assistance that you qualify for before they will help you. Mom never applied for social security spousal support from her husband. SSI today asked about her marriages and said we had to apply for spousal assistance. The agent looked that up and said mom didn’t qualify for SSI.

She turned us over to the unit supervisor to apply for spousal assistance. Mom’s social security will increase by a significant amount and it’s retroactive for 6 months. She was eligible for this many years ago and this would have made her life so much easier. I had encouraged her to do this but she just wouldn’t. While all this sounds great, mom will receive about $240 too much to qualify for assisted living funds.

This means that in order for her to go to assisted living we must pay out of pocket for her care, minus her social security. This is extremely expensive. I’m at the end of my abilities and I’m not able to keep her safe. It’s compounded by the fact that she is extremely angry with me most of the time. It’s freaking hard.

Today, when the supervisor at social security and I were talking about options and how to proceed, mom became very agitated and started threatening me. I finally said, “Mom, quit threatening me.” That was around 4:30 and it’s now 11pm and she still isn’t speaking.

The staff at the office knew she was a dementia patient but they looked at me with what I interpreted as pity. The staff was excellent, they just can’t help us.

We are going back to the beach tomorrow as a dear friend is getting married. Tom’s earthly assistant and a marvelous couple. Next week I will meet with her caseworker again. It doesn’t look promising but I’ll try.

Plan B is to see an elder care attorney and possibly sell the family home and use the money to pay for mom’s care. That will upset her but it looks like the only option.

This process is not acceptable. When I navigate through this, I have a calling to be an advocate to help people through a process that is cumbersome and unfriendly. I truly believe it is set up that way to make people walk away. This country’s health system doesn’t care about the poor or elderly. I’m seeing it every day.

And, there will be more later.

Caregiving- Alzheimer’s in the Family


I thought long and hard about what to share about this journey. I have omitted some things that may be helpful due to the sensitive nature of the discussion or actions of my mother.

I have decided to blog about my experience as primary (only) caregiver. Most information deals with the patient and what they go through with little thought given to the carer. Even though the whole family is affected by the disease.

25% of dementia patients are kept at home until they pass. 40% of caregivers die before the person they are taking care of. This is from a Stanford Medical recent study. Exhaustion and stress cause a myriad of illnesses in the caregiver. What happens to the dementia patient if their caregiver can no longer care for them? It’s another issue to plan for so your loved one doesn’t become “a ward of the state.” I recommend researching facilities and placing your loved one on the waiting list even if you plan to keep them at home. I wish that I had taken this step.

Often when you realize that you can’t keep them at home, you are already at the end of your abilities and the wait for a place can be months away. There is also a lot of paperwork if you can’t afford the care and there is no road map about how to proceed. Fortunately I have friends who could point me in the right direction.

This past week has been hard to navigate for both me and mom. She has gone days without speaking to me and gets angry when all I’m doing is trying to keep her safe. She told me on Sunday that I was mean and hateful because I reminded her that she couldn’t walk around without her walker. She still wants me to go home and let her live alone. She can’t. It’s also obvious that I cannot keep her safe.

You cannot reason with a dementia person. Mom, at present, has no depth perception and sees no danger. When she falls and has to have a broken bone repaired, she will most likely go into delirium and not come out of it. This means nothing to her. She doesn’t understand that she can’t take her Rollator up and down steps and she gets mad as heck when I stop her. I’m so mean.

Mom’s heart rate has been in the mid forties for a few weeks due to the A-Fib. We saw the cardiologist on Monday about her issues which includes all 4 of her heart valves leaking. I really liked Dr. Cooper as he took his time with us and explained everything and answered my questions respectfully.

He told me that mom is not a surgical candidate and that she can not take any type of blood thinner because of her skin picking. Finally a doctor that gets it. He started her on Amiodarone 200 mg twice a day for 2 weeks then 200 mg once a day unless her pulse drops below 50. This drug should help regulate her heart rate. He stopped the Cardizem permanently and we will wean off the Lopressor over the next 3 weeks. Once acclimated to the new drug he hopes to stop some of her other medications. Something I’ve asked for multiple times.

Amiodarone can cause many issues with heart and lungs, etc. Dr. Cooper explained that with mom being 83 and the issues show up 7-10 years down the road, we shouldn’t have to worry about the contraindications. Since mom can’t take the blood thinners, she is at a very high risk for stroke. The Doctor believes that this medication will improve her quality of life, even with dementia.

After the cardiology appointment Glenda came to stay with mom so that I could go home to take care of things and get a mini break. When I got back to mom’s Glenda said that she asked her multiple times where I was and if I was trying to put her in a “old folks home.” I’ve not spoken to mom about this yet so I know that at some level she knows that it’s time.

After Glenda left mom quit talking to me again, even when I directly address her. I decided to blog and maybe get her in bed early tonight. This living in imposed silence is hard. I had a little panic attack tonight and I haven’t had one in years. Existing like this is miserable. Mom has no quality of life and I’m not really living. Hopefully, a bed will open soon and I can get more therapy and get back to a life that I recognize as my own.

I’m so thankful for my friends and relatives that “get it” and support both mom and me. You all mean the world to me and help me make it through each day. I love you all so much.

More later.

Spiraling – Alzheimer’s in the Family


After several weeks of mom having better days, she has begun the downward spiral. I had been warned that she would crash but it was still a surprise. The spiral started over the last several days. Mom isn’t speaking to me very much and she is lost in her word find books all day until bedtime.

It is a struggle to get her to eat and when she speaks at all it’s low and hard to hear. She is sleeping about 75% of the time and is now walking away from her Rollator so I constantly have to remind her that she can’t do that. It is just a matter of time until she falls again. I’m doing the best that I can. So is she but she isn’t safe.

We had a weigh in on Tuesday and mom had lost 3.6 pounds in 2 weeks, 2 days. I weighed her again on Friday. Even with rollers in her hair she had lost over a pound since Tuesday. Her BP is around 90/62 with pulse ranging 40-52. Between her heart and other issues I don’t know how long this can go on.

She is still on the waiting list for assisted living and we’ve done all applications except for SSI at Social Security. That appointment is November 1. I’ve called all nearby offices and couldn’t get an earlier appointment. One agent told me that the powers that be ration these appointments and for me to call back every afternoon to see if a new block of appointments has been released. Bureaucracy at its finest. Seems they make it harder than it needs to be for already stressed out families. Sad.

Mom at times beaks out in forced and inappropriate laughter. It’s so odd to witness this. Her whole face has an exaggerated expression. It is both heartbreaking and weird. Alzheimer’s is a cruel disease.

Ilona has helped with mom and given me a much needed respite for a couple of days this week. This time away is much needed and rejuvenates my spirit. Even while away my phone is always on in case of a mom emergency. Mom will talk to Ilona more than me.

Mom told Ilona that I was selling her car and she needed it so that she could drive. Ilona told her that her doctor took away her driving privileges. Mom said that never happened and she is angry that I’m selling her car. Truth be told, mom’s driving was taken by her doctor in June (past due) and my son gave her the car when mom’s car was totaled. I’m simply signing it back to him as it doesn’t need to be a temptation for mom to drive. It’s all about safety and the fact that tags, taxes, and insurance are now an unnecessary expense that I don’t need to pay.

Mom also told Ilona that she isn’t happy with the current living arrangements. She still thinks she can live alone. She can’t, ever again. Ilona told her that she should be more appreciative of the sacrifices that are being made for her. I know the disease affects mom’s responses and it’s like reasoning with a 4 year old but it still causes emotional hurt.

So many challenges, so much exhaustion, so many sad days and the rare moments of glimpses of my real mom that makes me smile.

More later.

Bumpy Ride – Alzheimer’s in the Family


Last Sunday we woke up to mom bleeding again. She had been on a lower dose of xrelto for just two days. The bedding was covered in blood. I got the bleeding to stop with compression. It was a mess and the end of xrelto for her.

Mom wanted to go to church so we got ready and arrived at church (with a first aid kit) at 10:45 AM. The parking lot was empty and the church was locked. Mom didn’t remember and I didn’t know that church on 5th Sunday starts at 9:30 AM. Oh well, we tried.

We (I) decided to ride around the countryside to see what has changed since I moved away 47 years ago. It was a pleasant experience and mom even remembered some of the home places and she was quite amused at some of the large bean fields which had multiple scarecrows.

We ate at her favorite restaurant (Smithfield’s BBQ) again. She didn’t remember what they served and she had trouble deciding even with my help. She just struggled. She got to see and speak with some of her friends while we were there. I consider that a win for her.

When we got home, her friend Charlotte stopped by and we had a great visit. When she left Shirley stopped by. Mom didn’t know who she was at first but she remembered with a little prompting. When the visitors left mom went to sleep in her chair. Her arm had bled off and on all day. It finally stopped around 4 PM.

I called her GP early Monday morning and left a message. They called back before 9 AM and told me she couldn’t take xrelto and to stop it and keep her on the 325 milligrams of aspirin. I had already done that. I also made an appointment for that afternoon to get the FL2 form that I needed for admission to assisted living.

Glenda came to visit mom so that I could go to the doctor appointment, it went well. We discussed the xrelto issues and items pertaining to the FL2 form. I expressed concerns about the difficulties surrounding getting guidance and help as we have hit one roadblock after another. If it wasn’t for friends who have been through this, I would be lost. It shouldn’t be this way but our health care system in this country sucks, especially for the elderly and poor.

The first thing that the doctor said to me was, “We were wondering why you hadn’t asked for this form before now. We know how hard caregiving is and don’t want you to lose your health or die before Ms. Joyce.” Surprised me. Now I’ve heard it from three doctors “take care of yourself.” I’m trying . The doctor also said that mom’s valvular incompetence was the worst they have seen and they didn’t know what the cardiologist would recommend. They are helping us get her cardiology appointment moved up. No luck yet.

I picked up the FL2 form on Tuesday and went directly to meet with mom’s case worker. The doctor listed mom’s issues in this order: Alzheimer’s Disease, atrial fibrillation, coronary artery disease, hypertension, Hyperlipidemia, depression, anemia, and edema of the extremities. Gee whiz.

Mom’s case worker was a huge help. I signed multiple forms and made an application for assistance for mom. The case worker told me of the next steps which includes an application with social security. She also called the assisted living facility to tell them that mom had a pending application, the facility will admit her with the pending application.

I called social security and their first available appointment is November 1st, I took it. The agent told me that they don’t recognize a power of attorney and that mom should go with me. I explained the situation so the agent said they didn’t want it to be a hardship for her so I have to bring any paperwork that shows my name in relation to doing business for her. It seems complicated and I may have to take her in. I don’t understand how they think someone with Alzheimer’s is capable of signing any documents at all. Absolutely stupid. We’ll see how this all pans out.

We planned to come back to the beach on Wednesday. Mom bled all over the bed again, 3 days after stopping the xrelto. Craptastic. While I was washing sheets and packing to leave, Jackie offered to do mom’s hair. Thanks Jackie. Mom looked beautiful. We headed for the beach around noon. It was so good to get home.

Mom has been sleeping a lot since we got here. Here bp is low normal and her pulse is typically 40 to 47, which may make her sleepy. Ilona kept mom for me to see my friend, Ray, and get some down time. Ilona is such a huge help to me and I’m so glad to have her in my life. She is a very special person. She has given me three more days that she can keep mom so that I have much needed breaks. I appreciate her.

Friday mom wouldn’t brush her hair nor allow me. She slept about 70% of the day but she ate a little more than usual. She got a serving bowl sized ice cream for herself and laughed with me when I asked her about it. She said it was just the right size for lunch. She thoroughly enjoyed all of that ice cream and promptly went to sleep.

More later.

Exhausted – Alzheimer’s in the Family


On Monday I met with good friends Beverley and Joyce at Tin Roof Restaurant for lunch. It was great catching up. I got a 3 hour break from caregiving. Funny thing about getting these few breaks is the fact that in the back of your mind you worry about your loved one being ok. I’ll just call it “a break of sorts.”

I don’t know what I would do without my support system. I appreciate each and every one of you.

Mom and I went back to her house on Tuesday. So much going on this week. This traveling back and forth is very tiresome for both of us. It’s a necessity at this point, however.

Wednesday we went to Sampson Regional Hospital in Clinton for her Electrocardiogram. She asked me every few minutes “where are we going and what is going to happen there?” On this trip she was able to rollator back to the cardiac lab without the use of a wheelchair. Major improvement or just a better day. We know it is the later.

Afterwards we went to her favorite restaurant and she ate pretty well. She was exhausted when we got home.

Her GP’s office called at 9AM on Thursday with the results. Mom’s A-Fib is caused by valvular incompetence. All that means is that all 4 of the valves in her heart are regurgitating. It simply means that when her heart beats and the blood goes out of the chambers, there is a back flow into the chambers. The heart and body isn’t getting sufficient blood. It’s also called leaking valves. All 4 of them. The aortic valve is the worst.

The GP sent the results electronically to the cardiologist in hopes of moving her appointment up from 10/21. So far no luck. Mom is saying that she doesn’t want any surgery and I’m in agreement. Anesthesia may cause Alzheimer’s patients to become delusional and often they do not get better. We’ll wait to see what the cardiologist says but I will have to be convinced about her quality of life. We’ll see.

I spent the remainder of the day making phone calls and researching valvular incompetence. So much information but none on valvular incompetence in all 4 valves and nothing on any patients with dementia. Not even from Mayo Clinic or John Hopkins. Some studies indicated that patients over 80 (without dementia) had a 17.5% mortality rate at 30 days and 20% at 3 years. There was a 1 year recovery period. That said, that was aortic valve replacement only in patients without dementia.

I would like to add that there is an ongoing issue about xrelto. Mom bled profusely on the 20 MG dose and I took her off that and back on the 325 MG aspirin. She is also on Plavix. Her doctor wanted her put back on a lower dose of of xrelto anyway. After much passionate discussion, mom started on the lower dose yesterday. I’m conflicted about it but the doctor insisted. This dose is 15 MG so not much difference. If she bleeds this time, xrelto is done and maybe her current physicians.

Thursday night we went to bed early as I was extremely exhausted. I awoke around 1:30AM because I heard mom’s rollator. I thought maybe she was going to the bathroom but no. I got up and mom was in the living room and had all the lights on. She said that she saw men with flashlights trying to break in to the beauty shop. All the blinds were closed and there was no way that she could have seen that. There was no one outside. Maybe she was dreaming. I calmed her and got her back into bed and she went to sleep straight away. I did not, however, until almost time to get up. Exhaustion.

Friday I had an appointment at an assisted living facility. Thanks to Teresa for helping me navigate that. There isn’t much help out there for families in this situation. The meeting went well and mom is now on a waiting list to get in. It’s a nice place with a 4 star rating and they were able to answer all two pages of my questions satisfactorily. I was impressed by the staff and the facility. I spoke to some of the residents also. It was a positive experience. Now we wait.

Glenda and Eugene came by and brought a great lunch. Mom ate more than she has in a long time. Glenda is a good cook. We enjoyed their visit so much. They have been very supportive in our journey and for that I am thankful.

Today, Saturday, I slept until 9 AM and mom slept until 10. We sorely needed the rest. The journey is exhausting.

More later.


Crash and Burn – Alzheimer’s in the Family

It has been great being at my home. I took care of business, Tom’s estate, and seeing my dear friends who are helping me during this journey.

Mom started Zarelto on Wednesday. I questioned the doctor about this as mom constantly picks her skin. He said she had to take it to avoid a blood clot due to A-Fib. I’ve been reading The Art of Dying Well and I agree with the author. Why go to these lengths and a pacemaker if it will keep her heart beating regularly even after her mind dies? Seems counter to natural death to me.

At any rate, we’ve still been having good days (relatively speaking) and mom has been doing her word finds. She doesn’t communicate much, just retreats into her books. She is still reading the newspaper and magazines over and over as she doesn’t remember that she read them already. One thing I’ve learned is that she really doesn’t like Trump very much. We no longer watch any news of any kind. It’s too upsetting for her.

On Wednesday I signed paperwork for Tom’s estate. November 3 will be three years since I lost him. We are very close to the end of the estate business. I need it to be over so that I can move forward. After that Christine at Massage Envy gave me one of the best massages I’ve ever had. Much needed.

On Thursday I did chores and made special meals for mom. She is eating a little better but she is still losing weight. Almost 40 pounds since June 12th.

Ilona stayed with mom so that I could have some time away. She is so good with mom. I spent the evening with my dear friend, Ray. He has been so supportive of me in this journey, which I appreciate very much.

Friday was a busy day and I took mom to Sun City Cafe for dinner. Tracey Rae welcomed us with a big hug. Tracey Ray is one of my dearest friends at the beach. We had to take a rain check on our annual dual birthday celebrations. Hopefully that will happen on our next trip to the beach. I’ve missed her. Mom ate about a fourth of her chicken taco and she really enjoys going to Sun City.

Today started out with stripping mom’s bed. She bled all over the sheets, comforter and mattress cover. This was due to starting Zarelto on Wednesday. I questioned the doctor about putting her on this drug and they insisted it was to prevent her from having a stroke due to A-Fib. Well, she bled all over both sofas today and I had to work to get the bleeding stopped. The message at the doctor’s office said go to the ER. I made the executive decision to stop the Zarelto tonight.

I’ve been reading The Art of Dying Well which was recommended by my Alzheimer’s support group. Why give meds or opt for a pacemaker (as her doctor thinks is necessary) if the heart will beat regularly even after the brain dies. It makes no sense to me. There are things worse than a natural death. These are all decisions that have to be made.

Mom is on 10 medications. I ask over and over if we can take her off any of them. Her doctors say no. Next step is a pharmacologist to evaluate and remove and approve meds. At this stage of this game, why is she on any meds with their side affects. It doesn’t make “a tinkers damn” as mom would say. How is prolonging a terrible life better than choosing a natural death. I don’t think it is. Why torture someone trying to exit this existence. The body is trying to shut down but modern medicine try’s to save everyone, even those who will suffer terribly from prolonging their lives.

These are things that I ponder. I’m changing my paperwork for myself to avoid this for my children. No child should be put in this position when there are steps to take to avoid it.

I am also trying to get mom in an assisted living arrangement. I’m exhausted every day and can’t keep up this 24/7 schedule much longer. It’s affecting my health. With assisted living the major caregiving is done by others, giving me the opportunity to be her daughter, love her and not be stressed out all the time.

People shouldn’t judge any of my decisions. I love my mom and want the best for her, including keeping her safe. I also have to take into consideration my own health and well being. The stress of this situation is dangerous to my health. My own doctor has expressed his concerns about a 67 year old caregiver. Things to work through.

More later.


Up/Down and all Around – Alzheimer’s in the Family

Mom went to church again on Sunday. Charles went with us and we had a good time. After church mom wanted to go to Smithfield’s BBQ for lunch. She loved that restaurant although she doesn’t remember what they serve and she tells me to order for her. Sometimes she can’t remember the name of the restaurant.

We saw many friends there and they stopped by to gush over mom as she hasn’t felt like going out for weeks. She ate a few fries and 1/2 a bbq with slaw sandwich. When we got home she had to have a little nap.

I haven’t said much about it but for two days in the last several days my mom has called me Gayle. Gayle was mom’s younger sister who died the first of June from complications of Alzheimer’s. She still does from time to time. I believe during these times she does not remember that I’m her daughter.

Charles left Monday morning after a wonderful week stay. It was good having someone there with me and I slept good. I stripped beds after he left and caught up all the laundry. Mom wanted to go to McDonalds that evening to meet up with some of her friends that meet there. She hasn’t felt like doing that since June. She was a hoot and so were her friends. She played lottery scratch offs and visited. It was fun even though she didn’t win a thing. She can no longer understand the rules of the game and after I explained it, she still couldn’t believe she didn’t win. Our friend Mary said that she put the voodoo on everyone. It looked like she tried.

Today, we got up early and went to her doctor appointment. Mom does have Atrial Fibrillation and has an outpatient EKG scheduled for next Wednesday at Sampson Regional Hospital. Her pulse, while wearing the monitor went from 43 to 180. They started her on Zarelto. After the EKG, we are scheduled to see her cardiologist on 10/21, the earliest available appointment. Her GP believes that the cardiologist will want to give her a pacemaker. I have many questions before I can approve that procedure. It involves anesthesia and that may cause delirium. These choices are extremely hard to make.

After the appointment we came back to my home in Myrtle Beach. It was so good to get home. The cats have been very happy to see us. Mom isn’t too happy about being here but she has to come with me, I have a business and friends here. I still have an estate to settle. I do have a right and need to see my friends. Her only choice, if she doesn’t come with me, is to go into memory care. She doesn’t want that either. There will come a day when neither of us has a choice in that. I can’t keep going 24/7 with the current status. I’m tired most of the time.

Mom told me this week that she would just stay at home. She said she has money and that she would pay for someone to stay with her 24/7 and she would not go to the beach with me. It would cost $30/hr for a qualified person to stay with her. Mom has no money. She did come home with me without an argument but she had been pouting since we got here. That’s ok. I take no offense. She’ll either get over it or not. That’s okay. She is safe and I get to take care of overdue business and also get a massage for stress relief and finally get the oil changed in the Subaru, which is overdue.

Unfortunately, this trip will be short as I have to have her back for appointments in just a week. I would like for us to stay here until she has to go to memory care. It’s so much easier for me here. The hospital is light years ahead of the hospitals near her if we have an emergency. My house is handicap friendly. So many pluses but it isn’t HER home.

These are some of the challenges we face. All decisions are based in what is best for her and her safety. That is all that I can do. It’s damned hard.

More later.

Friends and Frustrations – Alzheimer’s in the Family


Mom continues to have good days. Such a blessing. Last Saturday Amos, Chelsea and the boys came for a visit and brought lunch. Mom was engaged and played I spy with the boys. She was almost like her old self. She did ask the boys over and over about school but she was laughing and playing with them. It was a good visit. When she became overstimulated, she retreated into her newspaper and Amos and I completed a few chores. All the locks are now on the top of the doors for her safety.

As mentioned in the last blog, mom went to church on Sunday. She wasn’t able to go since she got the woman of the year award in July.

Tuesday mom’s sisters-in-law, Brenda, came and brought her teenage grandsons to visit. She brought a tasty cake and garden veggies. Mom has enjoyed eating them a little at a time. The visit was very good and mom also engaged with them. It was lovely to see.

Late Tuesday afternoon my cousin Charles came in from Decatur to stay several days with us. It was such a good homecoming. We got mom to bed about 11 PM and we stayed up until 1:30 AM just talking. It was good for our souls. It is great having him here with us and he engaged mom in reminiscing about bygone days. So much laughter and animation. ❤️

Wednesday mom got a her hair did, which included getting a much needed perm. Charles and I had 2 hours to run errands, etc. while mom was at the shop with Jackie. It feels amazing to have bits of time to leave the house and get things done and have just that bit of freedom. I have always lived my life the way I wanted. Out with friends, traveling, and just being able to leave the house on the spur of the moment. I will never ever take that for granted again.

Thursday was neurologist appointment day in Raleigh. We made a day of it and went to my son, Amos’s house and had lunch with the family. Mom played some ball with Silas when he came home from preschool and we had a good visit. Her appointment was at 2:30 PM across town.

The neurologist appointment was uneventful and disappointing. They did regular questions and spent about 50 minutes with us but would not do anything for her because we haven’t gotten results from the heart monitor. Mom is still losing weight so they want her GP to order gastrointestinal testing to make sure her lack of appetite isn’t something other than the Alzheimer’s. It seems we run round and round to this doctor and that doctor and no one knows much more when they leave than they knew when they came in.

We get the results of the heart monitor on Tuesday. Hopefully, something will be done about the low heart rate, but at this point, who knows. I’m supposed to call the neurologist after the appointment on Tuesday about any medication that is prescribed so they can prescribe a medication for Alzheimer’s that will not interfere with appetite and the heart meds. I feel that we are on a hamster wheel, spinning and spinning.

I guess the next decision to be made is how long we run from doctor to doctor. If there really isn’t anything to change the outcome, why am I putting my mom through all this BS? Legitimate questions. Seems to be a way to line the pockets of “health care professionals.” There is a reason why I used quotes here.

Thursday night Liz and Aunt Helen brought a delicious dinner when they came to visit. We had a good time sitting around the table and reminiscing. Reminiscing is good for mom because she does remember the distant past. The present, not so much. It was a lovely evening.

Friday was a good day. We talked, watched movies, and did some housework. Mom ate her yogurt breakfast and helped herself to a bowl of ice cream about 30 minutes before lunch time. I delayed her lunch for a couple of hours and asked her if she was hungry. She said no but she picked up a sleeve of tea cookies and started to eat them. I took them from her and told her she had to have real food as she is suffering from malnutrition from eating too little and eating junk all the time.

Mom got extremely angry…. if looks could kill and she pouted like a 4 year old. I fixed her plate and Charles said, “Aunt Joyce, that lunch is so good.” She ate the small lunch and thanked me. I do wish that feeding her was not so difficult. The doctor says I’m doing it right by offering food several times a day and by letting her have ice cream and such when I can’t get her to eat anything else. It is hard knowing how much weight she is losing and that she is in fact malnourished. There is only so much a person can do.

Mom’s best friend, Zona Mae, came for a visit on Friday night. She stayed until 11 PM and entertained us with stories about farm life. She was a hoot and we had fun staying up past mom’s bedtime. We’ll see how late mom sleeps in today. The last thing mom asked me at bedtime last night was do we have to go anywhere tomorrow? I told her no and she seemed so relieved. Hopefully today will be a quiet day of rest. We have lots to do next week, including doctor appointments and going back to my home in Myrtle Beach.

More later.


Hush, I’m Reading the Paper – Alzheimer’s in the Family

The last several days have been amazing. Mom has been feeling better and more alert. Her memory is shot but for the first time in weeks she seems more cognizant of her surroundings.

Mom went to church Sunday for the first time since early July. Everyone was so glad to see her and she did well. Yesterday she went out to lunch with me and went with me to pick up her meds. We haven’t done that in some time. We had fun although she forbade me from saying Alzheimer’s. She now says it’s a dirty word and that IS NOT what is wrong with her. We had a lot of laughs about “her predicament” and she said, “We might as well laugh about it!” I’m so glad that she still has her sense of humor. Her doctors have even commented on that.

She has helped me fold laundry and put clothes away. This is a big change from not being able to get her out of her pajamas and sleeping for the better part of the day. I haven’t been able to get her out of the house except for doctor appointments in a long time.

Yesterday I was doing things around the house. I wasn’t making noise or talking. I must be getting on mom’s nerves because she angrily said,”Stop talking, I’m reading the newspaper.” I continued to be quiet, although mom had read that paper 12 times that day. Couldn’t remember that she read it so she read it again and again, sometimes aloud, to share the article with me. I feel so newsy!

We have a neurologist appointment this Thursday so it will be interesting to find out what they say. Mom still isn’t eating much. Other professionals tell me that this uptick in activity is normal and that she will crash and it will be worse than before. I’ll take these days and I’m grateful for them.

This journey is long, sad, and hard. That said, there are several moments in each day that will be thought of sweetly in the coming months. I’m so fortunate to be with my mom for her transition. What an honor.

More later.

Moneybags – Alzheimer’s in the Family


This has been a week. We came back to mom’s house as she was so fearful about hurricane Dorian. It wasn’t too bad here, just howling winds and rain. She was fearful here too but she was home.

Mom has had several good days in a row, which has been a blessing. Yesterday she was so lost and irritable. She slept a lot and asked me questions about her sister Gayle who died the first of June. She had such a sad day and was dwelling on things one minute and forgetting in the next and on to the next “bad” thing. There was no redirecting yesterday.

Her BP and pulse are staying pretty low. Heart rate has been steady around 45 for the last couple of days. We have a follow up with her doctor next week to develop a plan of management. With her not eating nearly enough, the options are few.

I cleaned her house yesterday and fixed the leak in the bathroom shower. I’ve become quite handy. It’s a necessity here in rural eastern North Carolina as we waited 4 days for a plumber who promised each day he would be here but he never came. Sigh.

Mom has decided she is going to stay in her house and to hell with anyone else’s needs and responsibilities. I told her that she would have to go with me back to the beach and she informed me that she has money and she will pay for someone to stay with her 24/7.

This is all very interesting as she has had to live on a strict budget on her fixed income just to make ends meet. I have been paying for house repairs and upkeep and to have her HVAC repaired, which was costly. She tells me now that she paid all those things because she has money. Something about her disease has her convinced that she can pay for everything. Expensive repairs, nice meals out, anything at any price. It’s really scary so she has no access to her finances.

One way that I handle her trying to pay for everything is that I tell her,”You paid yesterday, let me pay today.” So far that is working.

Mom got up early today and is having a day similar to yesterday. We just play it one day at a time, one hour at a time and play it as it lays. That is all that we can do.

More later.

Fears – Alzheimer’s in the Family


Mom did pretty well at home at the beach. She forgot about wanting to slap jaws and we even got her to go out to PF Chang’s for a late lunch on Sunday. Out of the 11 days we were there, we got her out of the house one time.

Mom fears leaving the house, showers, falling, and various other irrational things. Sometimes I believe she fears eating. Mom has always lived her life and made her decisions from a place of fear. Alzheimer’s has intensified her old and new fears. I’m learning how to manage her and make her feel safe. It isn’t an easy task.

Mom lost 4.4 pounds from 8/23 to 9/2. She just cannot eat, although she tries. Sometimes she even refuses her beloved ice cream. I offer food several times a day and have gotten used to her rejections. There are no arguments and no forcing. Just multiple tries each day.

Monday she decided she would make her own darn sandwich and didn’t want my help. She Rollatored over to the refrigerator and opened both doors and just stared in. Bread and deli items were in full view. After 5 minutes of her standing there with the doors open, I asked her if I could help. She said no and continued to stand there. She couldn’t figure out how to remove the items from the refrigerator. It was sad to watch. After 15 minutes, with the door ajar buzzer buzzing, I went over and made her sandwich. She laughed at me the whole time. I laughed with her. She ate 1/2 of the sandwich and was full. Such is our days.

Mom was getting worried about the hurricane, overly so. We had to limit the TV because it caused her so much stress. She calls it a hurrican and was sure we would all be killed, so, we came back to her house in Newton Grove. She’s still fearful about it here but there is no scary ocean outside. It’s all about making her feel safe.

We finished with the heart monitor on Monday. She did pretty good with it but was getting more and more aggressive about taking it apart. I was extremely happy to put it back in the case in one piece and UPS it back. It was a close one. Mom’s BP has ranged from 161/79 to 89/53 for several weeks. Her pulse for the last several days has been steady at 54. Hope the doctor can do something to help but if it’s from not eating, I don’t know how much they can do. We’ll see.

So now I must share a few concerns. The job I have is hard. It’s hard for mom. We appreciate all the kind words, deeds, and prayers. That said, we don’t need to hear negativity about how I’m handling things and what I should or could do or that I’m not doing enough. Stopping in for 15 minutes or so a week doesn’t give the whole picture. Calling for an update once every 60 days or so and then updating family and friends that everything is good isn’t helpful. It’s not your story to tell. Respect us and respect the decisions that have to be made. Build up and don’t tear down. I don’t have time for any of this and it certainly isn’t helping my mom.

I appreciate all of you and believe you are coming from a place of love. The fact remains that the decisions are on me and I’m doing the best that I can, taking into consideration doctor recommendations and support groups and being as educated as I can on this horrid disease.

More later.

Angry Bird-Alzheimer’s in the Family


We’ve had a pretty quiet week back at my home in Myrtle Beach. I’ve been to my own doctor appointments and worked on closing out Tom’s estate. I also managed getting someone to sit for mom (thank you Ilona) so that I could brunch with friends and visit. I’ve missed doing this so it was much needed for my sanity. I’m so thankful for my friends.

The orthopedic doctor finally injected my knee so I’m pretty much pain free. Hallelujah! I injured my knee getting my mom up when she fell three weeks ago. Everything is a process.

Mom still isn’t eating much. I have gotten some protein and veggies in her but she is still eating ice cream and pie and some sweet protein bars. Maybe 600 calories a day. She’s lost 3.4 pounds since last Friday. Her total weight loss since June 12th is 28.5 pounds, which is significant.

Mom has to wear the heart monitor until next week. We’ll be glad to be done with it. Her BP and pulse are still all over the place and her pulse didn’t get above 53 yesterday. A pulse of less than 60 is a big concern. Hopefully, the doctor can come up with a plan to help with that but the heart can react that way from not getting enough nutrition. We’ll see.

Day before yesterday, while I was at the orthopedic doctor, mom told Ilona that she wanted me to take her home and let her friends take care of her. She got pretty angry about it. Ilona told her that would not happen as someone had to be with her all the time and that her friends couldn’t do that. She also explained that mom was safer at my house, which is designed for aging in place. Mom hasn’t mentioned any of that to me but she did vent to my friend.

The day before that mom was in a “slap your jaws” frame of mind. If I walked by her she would glare at me angrily and say,”I’m going to slap your jaws.” She use to do that when I was a kid so it brought up some unpleasant memories. She also said it to the cats and dog. I eventually said,”you aren’t slapping anyone.” Just like that it was over. You have to remind yourself that it’s the disease. It’s still hard.

I washed and rolled her hair today and she’s decided to wear the curlers all day. No worries. What will that hurt? Nothing. She’s doing her word finds and I’m doing chores.

Tomorrow is another day. Let’s see how that goes. Love is the key.

But I’m eating so Much Food-Alzheimer’s in the Family


Mom went to her standing appointment for her hair do on Thursday morning. She came back looking beautiful. That afternoon I met with her PCP and we discussed end of life protocols and discussed a DNR. The doctor was so understanding and in agreement with what I proposed. We all know that mom’s prognosis is bleak and that lifesaving procedures will just exasperate the process and extend her suffering. Sometimes letting nature take its course is the best option.

Mom and I stopped by the doctor’s office on Friday morning to pick up her DNR form. We have to keep it with her at all times. She just knows that it is part of her paperwork in dealing with her disease. If she remembers that now, I don’t know. When I picked it up the receptionist cried with me. It is a real dose of reality to read it and see it completed. Reality set in.

After picking up the paperwork, mom and I headed back to my house at the beach. I have appointments and business to take care of. Life goes on no matter what you have to deal with.

On the trip down, mom was looking worried so I coached her to tell me what was bothering her. She said that she wanted to go to assistant living. That was a huge surprise. She kept talking about for about 1.5 hours. We both cried as we talked. She wants to go to Rolling Ridge, which is near her home. She doesn’t understand that when she goes it has to be memory care. Dementia patients need to be safe and assisted living isn’t enough. Memory care is a safer place and they provide programs that help Dementia patients. It doesn’t come cheap and has a base price of $6,400/month. Take out long term health care policies while you are young. Most families can’t afford long term care.

Mom has done well at the beach and is still having good days (relatively speaking). She has lost another 3 plus pounds this week. She got upset about it because, “I’m eating so much.” She is still eating 500-700 calories a day. Last night she ate homemade chocolate pie for dinner . Thanks Mary. We don’t care how she gets the calories as long as she gets them. She is still wearing the heart monitor and it’s been a chore to keep her from “fixing” it.

Mom slept in today and she is having some shortness of breath. Hopefully today will be a quiet day and uneventful. We don’t know how long we have on this journey, we are trying our best to do our best and that is all that we can do.

More later.


Vacationing – Alzheimer’s in the Family

Thursday was a good day. Mom got her hair done and had a full afternoon visit with Liz and Aunt Helen. It was a tearful but happy reunion. Mom was having a good day and was interacting, which was awesome. She ate ice cream for dinner.

Mom was tired and grumpy on Friday and I believe she was simply tired from all the Thursday activity. Glenda and Eugene came for a visit and they brought a great lunch with lots of fresh veggies and chicken. Mom ate a little and liked the food. She is eating about 475 to 700 calories a day. Not enough.

Saturday morning we left early to drive to Sapphire, NC for a vacation with our family. Mom was alert for the whole almost 6 hour drive. She is fixated on “tin roofs” on houses and redbugs (chiggars) when we drive through wooded areas. She’s had these fixations for about 2 months and talks about this at length, over and over and almost verbatim. I find it interesting. Deja vu, all over again!

It is great to be with my children and my grands. Mom has been very alert and talkative. Sunday was an interesting day. The kids went out for a hike to Turtle Falls. Mom and I stayed at the house. Mom was tired and complained about feeling funny. Her BP and pulse were all over the place. BP 161/79 with pulse of 57 to 88/62 with pulse of 145. She’s still wearing the heart monitor. The doctor thinks it may be A-Fib but it could be as simple as not eating enough to support her body functions. At this stage if it’s A-Fib why would one agree to implant a pacemaker? Feeding tube? What is wrong with letting nature take its course? NOTHING!

This brings us to today, Monday in the mountains. Temperature of 65 and beautiful sitting in the rockers on the porch. Mom got up, took her sink bath (she’s afraid of the shower and tub), dressed and she’s had her yogurt. She’s been asleep on the sofa ever since she had her breakfast. All this socialization has simply worn her out.

We go back home on Wednesday and I get to see her doctor on Thursday, without her. We have to sign some “end of life” directives. I don’t know how long we will have my mom but I do know she is and will be well loved.

More later.

Why Am I Losing So Much Weight? Alzheimer’s in the Family


We came back to Mom’s house yesterday after I finished with my appointments in Myrtle Beach. She had insisted on coming back the day before. We weighed mom yesterday and she had lost 3.6 pounds since last Tuesday.

She asked how can she lose so much weight since she was eating so much food. I explained to her that 500 to 700 calories a day really wasn’t eating a lot of food. She had an incredulous look on her face during that conversation. She has lost 22.6 pounds since June 1st.

After my last appointment yesterday, I loaded the car to come back to Mom’s. We had a “catastrophe” as we couldn’t find her purse. She told me it was in her suitcase so I went to the car and searched her suitcase to no avail. When I came back in the house she and Ilona were looking everywhere. Mom was in a panic, even though her ID and other important cards are in my purse as she takes them out often, along with her cash, to make sure she has them. She does it everywhere and it simply isn’t safe. She counts her money over and over because she can’t remember how much she has.

While she was Rollatoring around, I had an epiphany and lifted the seat to the device and there was her purse. Her face became a sunbeam with a large smile.

We had an uneventful trip home and today has been pretty good. I bought a few mini Baby Ruth bars and she will eat them. 50 calories at a time. Yay! Today she has eaten a little less than 700 calories and she’s been more alert but very confused. She was visited by her pastor, Corky, today and it was a good interchange.

She is facing her mortality head on and is sad about “leaving us.” She sits in “her chair ” all day and reads the paper over and over and works her word finds and puzzles. She seems content even though there is little interaction with us. Seems to me that she is just passing time until everything aligns and she can leave.

I have an appointment with her PCP next Thursday to talk and initiate end of life protocols. I’m at peace because we’re doing what is best for my wonderful mom. It is sad that this is happening to her and us but, you know, there are worse things in life.

I’m glad that I can be here for her. It is an honor to honor her during this transition. Please keep her in you thoughts and prayer, however you believe. We appreciate all of you.

More later. Thanks for reading.

Where is the Silverware- Alzheimer’s in the Family


Today has been a pretty good day. Got to appointments and got several chores done. Mom ate about 750 calories today.

The highlight was that 2 hours after eating 100 calories for lunch, she decided she wanted ice cream. She got up and took the Rollator to the kitchen and fumbled around. I asked “What are you doing?” She replied she was getting ice cream. She just couldn’t remember where the bowls and spoons were. I guided her and she found the bowls and spoons but she couldn’t find the ice cream in the refrigerator. I guided her to the freezer and it was a eureka moment. She laughed.

I was giving her independence and just watching over her. She got a little ice cream and then proceeded to put the spoon back in the silverware drawer. She enjoyed the treat and I washed all the affected silverware. No biggie.

Today was a good day. She almost fell once even with the Rollator. It was scary. She has been a little more alert today but in a world of her own. Each day is a blessing. I don’t know how many we have. We just make the best of things.

More later.

Not Acute-Alzheimer’s in the Family


Mom is alert today but still not moving from the sofa. I don’t think the Donepezil was responsible for the lack of appetite. She ate 1/2 cup of yogurt for breakfast and was full. For lunch she ate 5 small bites of chicken, 4 small bites of broccoli, and 3 small bites of cantaloupe. She simply isn’t hungry and says she feels full all the time.

We got a report on the MRI today saying there are no acute processes. While this is good it simply means that there was no new issue such as a stroke to cause her rapid decline. The neurologist will discuss the changes due to Alzheimer’s on our next visit.

They think her issues are wholly related to Alzheimer’s but to be sure we will be getting a chest and abdomen scan in the near future.

Things to be thankful for: mom thanked me for all I do for her and told me she loved me today. She is more alert today and not sleeping much. She seems to like being here and hasn’t asked to go home and she hasn’t talked about leaving me today.

She still is trying to fiddle with her monitor. Last night, at bedtime, she removed it and put it back on unassisted. The monitor started screaming as she had not really put it back on. I thanked her for helping me with it and got everything straightened out. She seemed pleased with herself and at least mom hasn’t taken the monitor apart yet. It’s a good thing.

Every day is different and has a new challenge. I’m looking into getting a ramp for her door as she tries to take the Rollator down the steps. We’re also trying to get a quote on a bathroom update to make her home safe for her. It’s hard to get anything done in that rural area and I wish we didn’t have to wait so long for good help. It will eventually come together and while I’m patient with mom, I’m not patient about things that concern her safety.

This is our New Normal. We start each day with no expectations and just take it as it is. More later.

It’s a Roller Coaster-Alzheimer’s in the Family


I brought mom back to the beach with me. I still have to manage my life while being mom’s full time caregiver. She likes it at my house because it’s quiet and designed to make it easy for her to get around.

The neurologist took her off the Donepezil on Tuesday. By Thursday she was more alert and actually eating a little more. Today she has eaten about 600 calories and keeps telling me she’s doing better. She is in some aspects but she’s still not eating enough and still has no energy. She likes to sit and nap and do her puzzles.

She is talking a little more but she is fixated on tin roofs, Trump (no more news in this house), and not being a burden. The only time she has left the sofa is to go to the bathroom. Today she knows it’s 2019. It’s a good thing.

Last night my friend, Ilona, kept mom for me to visit with my friend, Ray. Today another friend stayed so that I could treat myself to a mani-pedi. It was nice having time. It’s important. I feel more rested, which is good.

Worth noting: power bars and Ensure are a Godsend; patience is vital; and Alzheimer’s is a crappy disease.

I’m thankful for a couple of days of mom feeling better. That she knows who I am and she isn’t fighting with me when I’m trying to help her.

Now, if she’ll just not remove the heart monitor. That would be good.

More later.

Homesick-Alzheimer’s in the Family


It’s Wednesday, August 7th. I slept 9.5 hours and woke up exhausted. I got mom out of bed at 10AM. She is so weak today. Her best friend, Zona, stopped by with a coke and sausage biscuit and stayed for a visit. Mom ate 1/3 of the biscuit and was full.

We went back to the neurologist yesterday to address her downward spiral. I liked the associate that we saw. Seemed very competent. They took mom off the Donepezil and talked about how people with Alzheimer’s didn’t get better and the limited things that they can do for her. I told her that I understood all that but we needed help. She was just making sure that I understood the situation.

The doctor also told me to get help in taking care of mom as she didn’t want my heath to decline faster than mom’s. She talked to me about the toll caregiving takes on a person and for me to take care of myself. She was passionate about it. I know she’s right.

Mom has lost 19 pounds since the first week of June. It’s a 12% loss of weight. Over 5% loss is considered failure to thrive. The doctor ordered more test, the first being an MRI this afternoon. They are trying to determine if she has some other issue/s or if the brain damage due to the Alzheimer’s has affected the part of the brain that tells the body to process and use nutrients.

Yesterday mom told me that she was homesick. She was home, sitting in her favorite chair. So, now I’m thinking was she speaking of her heavenly home. I don’t know. She talks so much about “leaving here” and dying. Everyday. Yesterday she told the doctor that she was sad about leaving her family.

I have mom washed and dressed for her appointment and it’s 1 PM. She’ll rest until we leave at 3ish for her 4:30 PM MRI. Hopefully, they can determine what is going on. Next up is a chest and abdomen scan to rule out other disease. They tell me if she is in the failure to thrive stage, there isn’t much if anything that can be done and her time is short.

I don’t know how or what to feel. We get up each day and go forward and do what we can. Please keep us in your thoughts and prayers.

More later.

Ice Cream for Breakfast- Alzheimer’s in the Family


Mom has really been feeling poorly the last few days. I did manage to get her bathed and dressed today. First day out of three that she hasn’t stayed in pajamas. She is still not eating much, no matter what I try to feed her. We settled on two scoops of ice cream for breakfast today so that she could take her pills.

Each time I give her the meds she asks,”What’s all this? I only have one prescription.” She has been on 10 prescriptions for years. Pills morning and at bedtime. She resists.

She is still wearing the heart monitor and has not taken it apart yet. She’s confused about wearing it but mostly forgets about it unless she touches or sees it.

Mom has been in her chair for the last three days and only gets up to go to the bathroom a couple/three times a day. She takes her small meals in her chair too and moves from there to her bed at bedtime. She is so weak that she talks and cries (at times) in a whisper. I have been unsuccessful in getting her out of the house for anything except doctor appointments. She simply refuses.

Her blood work all came back normal. The results of the urinalysis just came back negative so there is no infection. Her rapid decline is most likely the Alzheimer Disease. We won’t have the results from the monitor for about 25 days but I know in my heart it isn’t her heart that’s causing the new issues.

Mom is still cursing, something that she hasn’t done in her previous life. She snaps at me a lot out of anger. I know it isn’t me, it’s her disease. She is weak and helpless, which is hard to witness. Each passing day reinforces what I already know. I will not be able to care for her at home much longer. I dread that for her but her safety takes precedence over staying in her house.

Her friends don’t understand why she just can’t go out to eat and shopping with them. They only see snapshots of her life when they stop to visit. They don’t know she isn’t following conversations because she can’t, or that she isn’t talking because she doesn’t understand what they are talking about. They seem to think that all I need to do is force her to eat, force her to go out, etc. All is can say is, “This isn’t how any of this works.”

We have an appointment with her neurologist tomorrow, in hopes of a new medication that may help her appetite. I think they will be surprised at her rate of decline since her last appointment on 7/13. We’ll see what they can do to help her.

Today we are making lemonade out of lemons.

More later.

Scrambled Days – Sleepless Nights- Alzheimer’s in the Family


This has been a week of adventure. My cousin, Glenda, came to care for mom on Tuesday. I had doctor appointments in Myrtle Beach. She stayed over night, allowing me to have a break for the first time in 2 months.

All went well and I came back to mom’s a little more rested. Being a caregiver to a loved one is hard. I’m showing more patience than I ever thought I could have. Caregivers have to be “on” 24 hours a day, 7 days a week. I sleep with one eye/ear open just in case mom decides to wander during the night. Showers are quick because things happen when the caregiver is out of sight.

I took mom to her PCP on Wednesday for a recheck. Something is going on with her heart. May be A-Fib. They ran an EKG, bloodwork and urinalysis to rule out infections, thyroid, etc. We have to cover all the bases. They ordered a Rollator walker and a cardiac monitor. Mom’s BP and pulse are all over the place, low to high so she’s been weak and dizzy. She is a fall risk. She kept telling the doctor,”I’m just wore out. All wore out.” She keeps talking about “going out of here.” When pressed she says she knows she is dying. I always respond,”Not today, mom, not today.”

My daughter, Jeremi, and my two young granddaughters came for a visit on Thursday. Mom was having the best day in about 12 days. She interacted with the Greats and stayed awake for the visit. She ate better and served everyone ice cream in a cone. Wow! I used this time to pickup her walker. She was too agitated to do that after her appointment on Wednesday. Mom told me that she felt better because she got two shots at the doctor. She did not.

I took mom in for her heart monitor on Friday at 8:30 AM. She asked me several dozen times where we were going and why. I answered patiently each time. Mom has lost her filter and I have now heard her curse for the first time. She is also saying many inappropriate things that she would never say before. We go with the flow. At this appointment she had trouble walking a few feet with the walker, shortness of breath and dizziness. The nurse had to get a wheelchair to move her and take her to the car. We are now trying to get a wheelchair. She simply can’t fall for a lot of reasons.

I explained to the cardiac technician that mom was in a fix it stage and that she may take the monitor apart. She has already taken apart a watch, CPAP, and a toilet tank. The plumber was here yesterday to fix the toilet. She keeps telling me that things are broken and she can fix them. The things aren’t broken until she “fixes” them. I can see this becoming expensive. I redirect many times a day but things still happen.

Mom’s screaming woke me up this morning around 3:00 AM. I ran in to her room. She was dreaming and screaming. I woke her up and she tried to speak but her words were all jumbled up. After a couple of minutes she could talk. She told me her mom was whipping her. She was so sad. I stayed with her until she went back to sleep. It’s 8:40 AM now and she’s still sleeping, crossways on the bed. I’ve been up since 4:20 AM. I just couldn’t go back to sleep.

When she awakes, I have to change the battery in the monitor and remove it for her bath. She forgets that she got the monitor and when she finds it asks me what it is. She doesn’t remember anything about this week and yesterday she couldn’t remember my daughter’s name. She is calling me Gayle a lot. Gayle is her younger sister who died of complications of Alzheimer’s the first of June. It’s sad to see her going through this.

Mom has also decided that she has unlimited funds and she wants to pay for everything. She constantly says, “I have money, I’m going to pay.” She is on fixed income and has always been frugal. I usually say, “You paid yesterday, let me pay today.” This seems to work now. We’ll see.

We are taking one day at a time. Doing the best that we can. We see her neurologist on Tuesday for an earlier recheck. Her PCP recommended that we not wait for her planned recheck in September. Things are moving so fast.

I know that I won’t be able to keep her at home at some point. Her safety is the main concern. I’m doing interviews now and forming a plan. It’s better than scrambling at the last minute and being under that pressure.

Thank you to all those in our support system. We appreciate you more than you know. You are all such a blessing.

We’ll see what today brings.

More later!

No Food for Me-Alzheimer’s in the Family


Mom has been having a hard time since last Friday, almost a week. She fell twice on Friday and has been weak and more disoriented. I took her to her personal care physician (PCP) yesterday as her BP and pulse were all over the place. Pulse varied from 49 to 94 in just a few hours.

The PCP did a physical, EKG, urinalysis and blood work. They told me to call her neurologist and move her recheck appointment from September to now. Mom has lost 16 pounds in less than 6 weeks. I can hardly get her to eat anything. She’s not hungry. We have added Ensure and I can pour it on ice cream if it helps to get it in. We all know how much she likes ice cream but sometimes she refuses that too.

The PCP ordered her a new walker and scheduled her to get a 30 day heart monitor to determine what is happening with her heart. We get that in the morning. Mom has been taking things apart for a while so I hope the monitor survives and we can develop a treatment plan.

I have a call in to the neurologist and awaiting a new appointment. Her PCP says there is a medication that may help her appetite. The neurologist needs to prescribe it but if he doesn’t the PCP will.

This is an interesting journey. No two days are alike. At present mom has extreme difficulty in walking and is very wobbly. She has no energy to do easy and routine tasks. For the past 2-3 days she says,”I know I’m going out.” When I talk to her about it she says she is referring to dying. She just knows she is dying. I always tell her, “Not today,” and that all of us will eventually die. She also speaks of leaving a debt burden for me, although I tell her she doesn’t owe anyone anything. My day is spent reassuring her when she expresses a worry.

So we go for the monitor tomorrow and we get results from all the tests so we can make a new plan. All I can do is keep her safe, love her and reassure her. We live each day as it comes. Thanks to the advice of a friend, I am approaching events and decisions from a clinical standpoint and using my heart to love her. It helps.

More later. Thanks for reading.


After the Fall -Alzheimer’s in the Family

Yesterday was a quiet day. Mom claimed she wasn’t sore after the fall on Friday but when she moved she made ouchie bsounds. No broken bones. She wasn’t very talkative yesterday and just retreated into her puzzle books.

We had planned to go to church this morning and she seemed to want to go. When she came out of her room this morning in her pajamas, I knew it was a no go. She’s been sleeping in her chair most of today, it’s 3 PM now. She tells me she feels bad but can’t express how and doesn’t respond when I ask her about it.

She has eaten four mouthfuls of food today and when she came to the table she was very unstable on her feet and appeared to be dizzy. No falls today though so that’s good. We never know how the day will go until we experience it. It can change in minutes, hours or days.

Oh, I forgot to report that Mom took her CPAP machine apart during the night on Friday. Can’t attempt to use it until replacement parts come in. Maybe we’ll just quit using it. Not worth the anxiety.

Alzheimer’s facts: 5.5 million people in the US have the disease with 3 million new cases each year in the USA. 44 million have the disease world wide; it most often affects women (they live longer); no cure; meds may or may not slow progression (not working for mom); annual cost of memory care is $127,000 to $158,000.

This disease takes a toll on health, wellbeing, finances and the family. It’s devastating to the person suffering from the disease.

We’re taking it one day at a time. Doing the best that we can. Tomorrow is another day.

More later!

Wander Woman-Alzheimer’s in the Family


Yesterday started at 7:00 AM and it seemed to be a pretty good day although Mom thought it was 2013. She was excited about getting her hair did. When she returned home she looked beautiful, thank you Jackie.

I needed to go to town to pick up her prescriptions. Mom decided to go with me although she couldn’t remember where I was going. We took off to town for an adventure. Little did I know what an adventure it would be. We picked up the meds and headed to her favorite store for a little shopping. Shopping for me is picking up needed items. Shopping for her is hanging on to a cart for stability and looking, never buying.

We were shopping together and I was putting things in the cart. Journals, new pins, grocery items. Mom was just looking and looking. She asked me to get some storage containers from the top shelf. In the time it took to turn and get them she was gone. Three seconds tops. I called and looked for her but she was no where to be found.

I went to store management and asked them to page her and gave a description, including what she was wearing. They paged several times and I continued to look. Employees were helping me search for her. I was beginning to feel a little panicked and almost ready to call the police when we found her wandering and oblivious. 12 minutes of being scared for my Mom.

I had her stand beside me as we checked out and went to the car. She had no idea of the scare she put us through. Our fun adventure was over and we headed home.

I spent a couple of hours researching GPS items so we can track her it she wanders again. And. It will happen even with constant vigilance. I want to be prepared. This is what is being ordered:

When we got home I was exhausted but needed to cook dinner. I sautéed chicken breast with onion and stir fried squash, garlic, bok choy, and mushrooms. It was the first time Mom had ever eaten bok choy and she liked it a lot. She actually ate everything on her plate. She told me the meal was so good and that I was a better cook than she. She said it sincerely and with love. Looked like the day was ending on a better note.

Soon after the meal she began to cry. I asked her what was wrong and in a minute of clarity she said, “I didn’t want to go out this way.” We talked about it for a bit with me reassuring her that we would be okay. And. Just like that she forgot about it. The rest of the night was uneventful.

Today we started our day at 7AM. She remembered how to make coffee and had it ready when I came to the kitchen. She had a burst of energy so “we” washed her sheets, made her bed and were just putzing around doing odds and ends when she FELL.

I was right there with her but she wouldn’t let me help her up. In her stubbornness she fell forward the second time. She will be sore but nothing appears to be broken. She laid on the floor for a few minutes at my insistence. I could not get her up. Luckily Jackie was at the beauty shop next door and she came to help me. We got her up and into her chair and told her to sit there a while. Mom complied.

Mom’ cousins Glenda and Eugene were coming and bringing lunch (lunch was delicious thank you Glenda and Eugene). Mom was doing better but we all noticed that she was talking like a little girl and pouty. It is almost 3 PM and she’s still talking like a little girl and pouting. She is being quiet and withdrawn.

Each day is different and there are some difficult moments. We meet each of the days with love and patience. As it should be.

More later.

A Day in the Life – Alzheimer’s in the Family


Yesterday was an interesting day. Up at 7:30AM to meet the day. Mom has remembered for two days how to use her cell phone. After her usual Greek yogurt breakfast it was medication time. She came into the kitchen to get water and stood at the sink and said, she couldn’t get water. There was no glass on the counter and she couldn’t remember to open the cabinet to get one. She just looked around looking puzzled. I went over and opened the cabinet and there were the glasses. She had such a look of surprise on her face and a big old smile about the glasses magically appearing.

I had the neighbor look out for her so I could go to my doctor appointment. All went well and mom was packed and ready to go when I got home. We were going back to her house for a while.

On the trip home mom was talkative for the first time in weeks. She asked me a couple of dozen times where her medication was and I patiently told her each time. She said she wanted to drive her car when we got home. I reminded her that she can no longer drive. She wanted to know who said that and I replied that her doctor said that. She wanted to know why the doctor was only telling me and not her. The rub is that he did tell her.

She doesn’t believe that she can’t drive, live alone, or that she has Alzheimer. She went from being angry to crying. I told her not to worry because I would take care of her, it is our new normal. That didn’t make her any happier.

We finally arrived at her house. She doesn’t remember any of the conversation, that she got an award at church Sunday before last, or that we had been staying at my house. She “read” her mail as she sat in “her ” chair and she has reverted to not communicating.

She is still not hungry and will only eat a little bit of food (unless it’s ice cream). Sometimes she chokes when she tries to eat. We were up early today, 7AM, she’s back in her chair reading the newspaper and being very quiet. I can’t get her to eat her breakfast but she will eventually. She’s getting her hair did this morning. She’s tried to cut her own hair several times in the past week. We’ve had a lot of redirection going on.

Lessons learned this week: Move all knives to a safe location; move kitchen shears to a safe place, put pictures of what is in the cabinets on the doors (thanks Liz); get a baby monitor (thanks Michelle); put locks at the top of doors out of eye level; gin up the patience; and love with all your heart.

More later.

Ice Cream Nazi-Alzheimer Disease in the Family


Today has been an interesting day. Mom woke up around 8:30 AM and was in a mood. She was a little cross and didn’t want to eat breakfast, which is usually Greek yogurt with fruit. She eventually ate the yogurt and promptly went to sleep. She was “put out” that she couldn’t have ice cream for breakfast. It was a no from me. When she woke up again, Ilona (a friend who lives with me) supervised her meds for me as I was working on a project on the patio. Ilona is a wonderful young woman, an EMT by trade, and she is very good with Mom and Mom is really fond of her.

Later in the morning Mom decided that she needed to help out and started vacuuming a couple of rooms. We just let her “help out” as it was really important to her. She remembers the vacuum but not really how to vacuum. In the greater scheme of things, it’s okay. We will clean up later when she is asleep.

Later in the day Mom got up and left the room. She went back to the bedroom and for the first time in weeks she remembered how to use her cell phone. She called her lifelong friend, Zona. She hasn’t been able to use the cell phone for a long time. Somehow it clicked for her today. With Alzheimer Disease you never know what the day will bring.

Mom was not interested in eating lunch and absolutely refused. She said she wasn’t hungry but I highly suspect it’s because she couldn’t have ice cream. I’m not the soup Nazi from Seinfeld, I’m the ice cream Nazi. “No ice cream for you!” I prepared sauteed chicken, bok choy, and mushroom rice for dinner. She did eat a little and said she was full. Then she asked about ice cream. I said, “Mom, you said you were full.” She said she just wanted ice cream. Maybe before bedtime. She can’t live on ice cream and I don’t try to argue about it but she simply can’t have it for every meal and not suffer from malnutrition. We walk a thin line.

At the moment Mom is engrossed in Web of Lies on the ID channel. She’s fixated. She has not worked any in her puzzle books today, which is unusual. I really don’t know what that means. At 7:45 she asked if it was bedtime. I told her it wasn’t so shes still awake at 8:25 PM. She has hardly spoken today. No conversation. She’s just in her own little world. It’s where she feels safe. All I know is that tomorrow is another day and I have no idea what tomorrow will bring. All I can do is love her and keep her safe. Each day is a blessing. I wouldn’t have it any other way. More later.

It’s Ice Cream for Dinner-Alzheimer Disease in the Family


Our days are pretty low key as stimulation, even conversation, is overwhelming for Mom. She likes the quiet and solitude of staying in the house and working her puzzles everyday. At least while she’s got the book and the pencil in her hand she can’t pick at her skin. Our days are full of a lot of redirection. This is not meant in a derogatory way but is meant to be fully transparent about dealing with Alzheimer. Most of the time we have to reason with my Mom similar to reasoning with a toddler. I’ve never been known for my patience but I find that I have infinite patience with her. That’s a blessing, no matter how you look at it.

Being a caregiver has it’s challenges. I will be 67 next month and this isn’t how I planned to spend my golden years. That’s okay. Caring for my Mom is my responsibility and an act of love. I have no siblings to help and must depend on hiring people to get a break. As a caregiver, one can’t leave the house for any period of time without someone coming in to “help” Mom. Yesterday my dear friend, Tracey, took me out to lunch at a new, nearby restaurant. 44th and Kings, a nice little place. We were gone about two hours and the neighbors watched out for my Mom while we were out. It was revitalizing to get away and laugh and joke and catch up with my dear friend. I felt like myself and a real person. I miss that part of my life. The travel, the meals out with friends, the things are too numerous to list. When we get into a better routine we’ll be able to have structured help and I, as a caregiver, can do a little more for myself to stay sane. Hope that happens soon.

Many decisions are being made. We will probably live at my Mom’s place for the foreseeable future. We have been living two weeks at Mom’s and two weeks at my house at Myrtle Beach. Each trip is hard for her and I believe it will be best for her to be in a stable place that is familiar to her for as long as she is able. We will probably go to her house this week. I have a business in Myrtle Beach and two homes. I want to keep my residency here so there are issues to be addressed. Planning is key to everything. Planning gives peace of mind.

After lunch with Tracey I returned home to find Mom sitting right where I left her, puzzle book in hand. She ate 1/2 of a pimento cheese sandwich and ice cream for lunch. I did some chores and took a little nap. Mom had eaten a soup mug of chocolate chip ice cream for dinner and was too full for the planned nutritious meal. Sometimes you just have to go with the flow and let it be. Life is short, especially for her.

Mom has started taking her CPAP mask off during the night. Now she seldom will tolerate it except for a few hours. Even if she quits wearing it altogether, why worry her about it. She doesn’t understand and it will just add stress for her. We aren’t looking for battles, we are looking for peace. At 83, how much can not using the CPAP shorten her life? It isn’t important in the greater scheme of things.

Mom woke up at 10 AM today and had her usual Greek Yogurt (after I redirected from ice cream) for breakfast and is already into her puzzles. She’s not talking much today, which is okay. Today looks like a quiet day. I may get some chores done but I may not. This journey may be a loss of self for my Mom but it is also a journey of self reflection and self awareness. It’s hard for me but I’m equally sure that it is harder for my Mom.

More to follow. I hope this baring of our truths can help others. That is the goal.

The New Normal, Living with Alzheimer Disease


Our journey is moving forward at a steady pace. Mom is doing okay and does her crosswords puzzles, criptiquotes, and word finds every day. Just a few months ago she could finish a hard puzzle in a matter of minutes. Now she struggles to finish one in several hours. She tells me how hard they are to do and I must be buying her the PhD level books. I’m not. Today, she has worked in her books for about 10 hours. I have to stop her so that she can eat lunch and dinner. She will be doing those puzzles until I tell her that it is time for bed, at 10:30 PM. Not much conversation today.

Mom doesn’t like to leave the house. I don’t push her but if I ask her to go with me and she says yes, we head straight out the door before she changes her mind. I took her and her best friend shopping for new outfits last week. They love having a younger chauffeur and Mom and Zona can be quite funny when together. While out and about, vigilance is important as she will wander away. I have to find items and give her two choices as she struggles with simple decisions and tasks. When we went to the dressing room, she needed help trying on the items. As we disrobed her to try the clothes I discovered that she had picked her skin on her torso and back. We (doctors included) knew she was picking at her nails, arms and legs but had no idea she was picking everywhere. Her arms, legs and body are covered in sores. The condition is known as Dermatillomania and is seen in the middle stages of Alzheimer Disease. No medicine seems to help her with this issue. The concern is that she will develop and infection and that would expedite her mental spiral. She will stop, at least for a little while, when reminded.

Mom picked a beautiful teal pants suit with a nice necklace and Zona picked a couple of items too. These outfits were for this past Sunday. Mom was going to be honored as Woman of the Year at her church and it was a surprise. We also shopped for hats as all the women were to wear hats for Crowns for Christ. We all bought fabulous hats. The shopping tired the friends out so they were pretty quiet on the way home. It was a good outing but mom doesn’t remember anything about the shopping trip and wondered where the clothes came from.

When we got to the church on Sunday, July 14th, Mom’s grandchildren, great grands, brother and cousins were there waiting. Mom got very excited that they were there but she still didn’t know that anything was up. During the service they talked about all she has done over the years for the church and community and then announced her name and asked her to come to the altar. She looked at me and asked, “Did you know about this?” I replied, “Why, yes I did,” with a huge smile on my face. Mom went up and received her plaque and a dozen variegated pink roses. They asked her if she wanted to say anything…… I held my breath as at this point in our journey we never know what she might say. Mom said, “I’m speechless,” with a big grin on her face. They took her picture and had the family come up for more pictures.

After the award, we were all invited to the fellowship hall for a large country food spread and some fellowship. Mom did well and everyone came by to talk with her and many told me how much they love her. It was a good event and mom was all smiles. When we went back to her house there were many visitors who came by to see her. The last visitors left around 6:30 PM, after Mom fell asleep in her chair. She was exhausted. It was a lovely day with a lot of smiles and hugs and kisses. Today, Mom doesn’t remember much about that day. That’s okay. All of us will help her remember (for a short while).

This week has been pretty quiet. Mom has been enjoying her puzzle books, ice cream and kettle chips, not necessarily in that order. Mom has adopted my cat, Scurry Murray, as her own and doesn’t want me to touch him. She has gone out with me a couple of times to run errands and we bought some lovely flowers. She loves flowers a lot but not as much as ice cream. I did her hair for her and she’s been getting her shower and wearing makeup everyday. Each day with her is a blessing and we try to fill her days with acceptance and love. She is a very special woman. She deserves better than this.

Mom and her birthday bracelet

I find this blog cathartic. Don’t know how often I will post but will as this journey progressives. This has been a good week, even with emotions being fluid as we try to come to grips with our new normal. Stay tuned for updates.

The Loss of Self, Alzheimer Disease in the Family – Volume 1


Blogging about health is really hard to do. Looking back, this journey began about 18 months ago. My mother, Joyce, started repeating herself a little. Nothing concerning at all as she was 81 at that time. She began a downhill slope and by October 2018, she had trouble remembering how to use her cell phone and began more repetitive questions and statements. I had been taking her to her doctor all during this time but no diagnosis was made.

Later in October 2018, she phoned me and wanted to know when my son, Amos, was coming to get his car. She said he had left it in her yard and she wanted it gone. She was a little irritated about that car being there. Amos gave his older car to mom after her original car had been borrowed by a neighbor and totaled in an accident (not the friend’s fault). Mom went through the title transfer and getting new tags, etc in August. By October she didn’t remember any of this. It took me two days to be able to get to her house, 2.5 hours away and during that time she phoned multiple times about that darn car. I scheduled another appointment with her doctor.

The earliest appointment was two weeks away. During that time she improved quite a bit and her memory was improving. She went from “that car isn’t mine” to “you say it’s my car” to “oh, that’s my car out there.” She was having a good day when we went to the doctor appointment but he asked some questions, performed an exam, and then scheduled several tests, including an MRI. They got us in 10 days later for the tests. The test results were unremarkable, diagnosis was “mild atrophy and small vessel white matter ischemic change.” While the diagnosis doesn’t look to bad, it can’t convey the loss of self my mother was experiencing.

Things progressed okay after the October episode. Mom could live alone, she could still drive, but she was still experiencing memory loss. In January 2019, I scheduled another appointment with her doctor. I was leaving on an extended trip in February and I wanted to make sure she was okay to leave, with my son checking in on her and with my calling her basically everyday while gone. The doctor found no significant changes and I was cleared to travel. In May my Mom didn’t know where I was or who I was traveling with. She asked every time I called, she asked if we flew out (we were RVing).

Mother’s younger sister died of dementia and heart disease on June 2. This seemed to send her in a tail spin. She spiraled hard and fast. Mom couldn’t travel to Michigan for the funeral so Amos took his laptop and arranged a live feed of the funeral on June 2, so mom could “be there.” It went well. By June 10th, mom didn’t remember that her sister had died and was very distraught. The earliest flight that I could get from Rapid City, South Dakota was on June 12th. When I got to her house she was in a bad way mentally. I scheduled another doctor appointment and she scored a 14 out of 28 on a cognitive test. She thought is was August 2001. This was a significant decline. Her physician told her she could not drive nor live alone. She forcefully said, “I’m not AFRAID to live alone.” He told her it wasn’t about being afraid, it was about safety. The doctor’s office scheduled an appointment with a neurological specialist in Raleigh, NC. The appointment was for July 12th.

In the time we had before the neurology appointment, I was living with mom and making sure her medicine was taken correctly and that she ate regular meals, even when she said she wasn’t hungry. She’s never hungry now but she will eat if you put it in front of her. She thinks I’m a good cook so that is a plus. One day I was getting a shower and when I got out, the front door was open and she was gone. I called and called to her and was in a mild panic. I finally found her pulling weeds from a flower bed and she was laughing because she didn’t answer me on purpose. It’s just the way her mind works now. She also forgot she couldn’t drive and I found her in the car backing out of the carport. She had another set of keys that she found. She hopped out of the car and said, “I wasn’t going anywhere!” Yet, she was. The other set of keys is under lock and key now also.

With all that I’m sharing, I have to say that we have laughed a lot, hugged each other and told each other of our love. Precious memories. Oh, and then there is the ice cream (premium brands) and the kettle chips. She loves them and will hoard a whole pint of Talenti ice cream and not let me have any. She wants kettle chips for lunch. Nothing else. Kettle chips. I don’t fight those battles, she can have a nutritious meal the next time. It makes her happy. Especially when she doesn’t let me have any of that precious ice cream.

We went to Raleigh Neurology on July 12th and saw Dr. Kenneth Carnes. I really liked his knowledge and manner. He was excellent with mom and gave her cognitive test in a normal (kind of) discussion. She thought it was 2013 that day. Before we left he diagnosed her with early onset Alzheimer Disease. He prescribed Aricept (donepezil hydrochloride) for her. It’s for memory and she takes it at night. It does help her sleep but I’ve not seen any memory improvements but sleep is good. This is the stage that most people get diagnosed but according to the Alzheimer group, early onset is stage 4. It can last months or years. Mom is 83 and her disease seems to be going at a good clip. She can’t live alone or drive, forever now. She seems to be okay and working her puzzle books. She will do this for hours. She doesn’t like to converse much but she does sometimes. It’s difficult to watch this happen.

Right now we are all adjusting to the living arrangement changes and acceptance of our new life. Mom and I call it “our new normal.” There are many decisions being made about living arrangements and processes. It will all fall into place. I plan to make memories with my mom and love her with all my heart. There are several resources available for us.

I’ll follow up as situations change or come up. We are striving to make the best of this life. It’s the only one we have. More later.

In the Shadows of Mount Rushmore, Custer State Park and More. June 4-18


We based our operations in Rapid City, South Dakota at the Shadows of Rushmore RV Park, $10/night with Coast to Coast. It was a nice resort and convenient to everything. While there we visited Mount Rushmore, where we met Nick Clifford, the last surviving sculptor of the monument.I bought his book and he autographed it. It was a nice visit and I understand that he recently celebrated his 98th birthday. We also visited Custer State Park, which I enjoyed enough that we went for a second day. The Badlands was also beautiful and breathtaking. Deadwood and Lead were also interesting places with so much western history. All in all this was a wonderful stop but it was cut short as I had to come home due to a family emergency on the 15th. More about that later.

I do recommend visiting this area. South Dakota is a beautiful state and the people are very friendly and inviting. There is a lot to see here. This blog is mostly pictures with descriptions. Please enjoy.

I flew out of Rapid City Regional Airport in South Dakota at 5 AM on June 15, headed to Raleigh Durham Airport (RDU) in North Carolina. The Rapid City Airport had two runways and seven gates. I flew a Delta small jet, capacity 50 people, to Minneapolis. I arrived in RDU around 8:30 PM and was so glad to see my son waiting for me. My mother’s condition had worsened so I had to cut my trip short. Travel is on hold for me for a bit and while it is, I’m going to blog about my family’s journey with Alzheimer Disease. I will be brutally honest, sharing insights, and I hope it helps someone. Please stay tuned.

The Battle of Greasy Grass or Little Bighorn…. Hardin, Montana June 2-4


We did a stopover at the Crow Agency near Hardin, Montana. Our base of operations was  Grandview Campground , $42/night with Good Sam’s and is cash only. The plan was to visit the Little Big Horn National Monument and take a tour with Apsaalooke Tours to get the Native American point of view. We were not disappointed.

The Native American’s call the Battle of Little Bighorn the Battle of Greasy Grass because the grass in the area is so tall that it rubbed the bellies of their horses and caused a shimmer on the grasses. We went on a tour with the Apsaalooke Tours, run by the Crow Indians and includes visiting the Crow Reservation. We had three Crow guides and Ray and I were the only people on this particular tour. It was an excellent two hour tour and we learned so much. I highly recommend going and engaging with the guides to learn a more complete picture of this Battle. I also recommend reading Lakota Noon by Gregory F. Michno. He used recorded Native American accounts of the battle to form a timeline and give their perspective on what really happened that day. It’s a fascinating account and well worth the read.

After the Apsaalooke Tour we went to the visitor center/museum and watched the introductory film. It was interesting that the Park Service now indicate that the Native Americans were protecting their homes and their way of life. Afterwards we went on our own self-guided tour, which was also very informative. The Monument has changed over the years and brown markers have been laid to indicate where Native Americans fell in battle. These were added well after the white markers of the US Calvary. On the knoll we saw a number of white and brown markers and the marker for General George Armstrong Custer. One thing I noticed while touring was that visitors were quiet and reverent as this was a place of loss of life and the magnitude of what actually transpired here.

The battle was on June 25-26, 1876 between the US 7th Calvary, led by General George Armstrong Custer and the Lakota-Northern Cheyenne, and Arapaho tribes who were camped together at the Little Bighorn River, while hunting. The Native Americans were led by Crazy Horse in battle and Sitting Bull at the camp. Other tribal leaders were Gall, Red Horse, American Horse, Two Kettles, and Two Eagles. The Calvary led by Reno attacked the unsuspecting encampment, which was full of women and children, and the battle began. It didn’t go exactly like the Calvary expected. The tribes fought back fiercely to protect their families and homes.

Six women and four children were killed in Reno’s original attack. During the battle thirty one Native warriors died in combat or from wounds. The 7th Calvary lost sixteen officers and 242 troops, with one officer and fifty one wounded. The 7th Calvary lost 52% and suffered a massive defeat with Reno becoming the scapegoat after the battle. I encourage you to read credible sources as to what really happened. I promise that it will be an eyeopener for you.

I do encourage you to read more about this battle and the Indian Wars. Our history books painted a much different picture than what actually happened during this time. Live, learn, grow. Thanks for reading. Next up Rapid City, South Dakota, a beautiful and historic place.