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.

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.

As always, more later.

Heart Failure – Alzheimer’s in the Family

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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

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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

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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.

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.

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.

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.

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.

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

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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.

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.

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.

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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

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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

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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

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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.

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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.