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.

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.

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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.

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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

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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

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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

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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.