Our Lives at Stage 7 of Alzheimer’s

For the most part, “Living with Alzheimer’s” has meant a long gradual decline for Kate and a similar pattern for our adaptation to change. The way I describe it is that our “world” becomes smaller as she declines. Until the pandemic, however, we continued to live somewhat normally. The pandemic caused us to live a more sheltered life. I know that was true for everyone, but it brought us some special challenges.

Prior to that, we led active lives. We went to Panera almost every morning. We ate out for both lunch and dinner, and we went to the café at Barnes & Noble in the afternoon. During that time we had contact with lots of people, and Kate worked jigsaw puzzles on her iPad 6-8 hours a day.

Unlike earlier changes, the pandemic brought about more abrupt and consequential ones for us. Suddenly, we were homebound. No Panera. No meals out. No Barnes & Noble. To make matters worse, Kate had already begun to lose her ability to work puzzles on her iPad. One week into the pandemic, she completely lost that ability. It was her last self-initiated activity.

That put a good bit of pressure on me to take up the slack. I used all of the tools in my caregiver’s toolbox to do that; nevertheless, we had inactive moments during the day. Kate became tired of specific activities and wanted to rest more than in the past.

At least six months before the pandemic, she began to decline in other ways. She had more difficulty getting out of a chair and out of bed in the morning. She was becoming uneasy going down steps and unsteady while walking. Her doctor and I had talked about a walker and decided that her Alzheimer’s would make that difficult. A wheelchair would be the next step. I am sure all this was exacerbated by our more sedentary lives during the pandemic.

Two weeks before Thanksgiving, we both got the virus. That brought about another abrupt change. She was in bed so long that she lost her mobility altogether. I’ll never know exactly, but I believe the virus pushed that ahead 6-8 months.

Our world shrank considerably. It hasn’t all been downhill since she had COVID. We moved into our new home in April 2021. Gradually, we started getting Kate out of bed each day. Then, we began to take her on short walks in her wheelchair around the various buildings in our community. I had been bringing in carry-out meals from the dining room, but as Kate began to feel more comfortable, we started eating in the dining room. After that, we added an afternoon trip down the hall for ice cream. Being able to get Kate out twice a day has improved our quality of life significantly.

Having said that, we continue to have ups and downs in our daily lives. As I noted earlier, our world is much smaller now. That became especially true with Kate’s stroke 3 ½ months ago. Her aphasia began at least two years ago and worsened with the stroke. She’s recovered a little, but not much. She talks significantly less than she did before, and what she says is mostly unintelligible. The good news is that in recent weeks, she is talking more. I am hopeful that she will improve, but I also recognize that Alzheimer’s itself will eventually take that ability away from her.

At this stage, she sleeps or rests more than she did in the past. She is in bed at least eighteen hours a day and sometimes a little more. That has been the pattern since she came home from the hospital after COVID. She actually sleeps more now because she often falls asleep between 6:30 and 7:00 right after the caregiver leaves. That is new since her stroke. Prior to that, we spent the evening watching music videos on YouTube. That was the best part of our day. I treasured those moments. 

One of my new concerns is that she frequently chokes. Sometimes that occurs when she is eating, but it happens more often when she is not. She seems to accumulate phlegm in her throat and coughs it up periodically, something that is common at this stage of Alzheimer’s.

Kate’s mornings have always been the most difficult time of the day. It still is. She often wakes up with a puzzled look on her face. I get in bed beside her and turn on music that I know she enjoys. Even then, I can’t count on her feeling comfortable. Generally, she doesn’t speak a word until late morning or after I have gone to lunch. When I get back, she frequently smiles and speaks a few words, but remains quiet most of the time.

Despite these changes, there is much for which we are thankful. One of those is the fact she is still with me. It’s been almost 11 ½ years since her diagnosis, and 15-17 years since her earliest symptoms. Not only that, we still have our “Happy Moments.” They may be less frequent, but they are very special. Sometimes she wakes up in a cheerful mood and gives me her beautiful smile. In those cases, she also speaks or tries to speak. We even sing songs together.

When I return from lunch, I often get a smile. She’s always in her recliner, and I get down on my knees so that I can look into her eyes and tell her how glad I am to see her.

We enjoy our afternoon ice cream and dinner. Most of the time she doesn’t say anything, but sometimes she does. She often smiles, however, and residents often comment about that. They love it, and I do too.

On top of these things, we sometimes have very good days. One of those was this past Saturday. She was awake early and cheerful all day long. We spent all morning together before the caregiver arrived. Then I went to lunch. We spent the rest of the day enjoying ice cream, dinner, and music until we went to sleep. I never thought we would have days like that this late in her Alzheimer’s, and I am hopeful that we will have more of them in the days ahead. I am grateful.

Another Bump in the Road

It’s been three months and one week since Kate’s stroke. She has made a good recovery except for her speech and her right leg, but Friday, we hit another bump in the road. She had a TIA. Just before leaving for lunch, I walked over to Kate to tell her goodbye. The caregiver, who was feeding her, told me that she wasn’t eating. It didn’t appear to me that anything was out of the ordinary. Sometimes she rejects a bite of food or a drink but takes it if offered to her again. I told the caregiver to try again, and I left.

When I returned, I went directly to Kate who was in her recliner. She smiled at me, and I took her hand. She tried to talk to me, but I couldn’t understand her. That’s not unusual, especially since her stroke. Then, I noticed that her mouth was drooping slightly. As she talked, the droop went away. I immediately thought that she might have had a TIA. I called her doctor and told him about it. I also conveyed that it appeared that she was all right now.

Since she seemed to have recovered, we went downstairs for ice cream. She was quiet but she ate all her ice cream. While we were there, I asked the caregiver to tell me more about what happened as I was leaving. She told me that Kate didn’t eat her lunch and that she had fallen asleep. I probed a little and discovered that what she observed was very similar to what I had observed when she had her stroke. She just drifted off, and that lasted about 10 minutes. When I heard that, I felt sure she had had a TIA and was beginning to recover when I got home.

We also went to dinner in the dining room. During that time, she began to get sleepy and didn’t finish her dinner. We bought her back to the apartment and put her to bed. She went to sleep right away, slept through the night, and most of the day Saturday. She ate all her lunch and dinner. That was a good sign. She went back to sleep shortly after dinner, but she awoke for about an hour before I called it a night. She didn’t say a word during that time, but she held my hand and stroked my arm with her other hand. That was a good way to end the day.

Sunday was another day of recovery. She was awake early but went back to sleep a few minutes later. The caregiver arrived at noon, and I went to lunch. When I returned, the caregiver had gotten Kate up and dressed and in her recliner. She was quiet but not asleep. We got our afternoon ice cream and dinner without any problem.

She went to sleep quickly when we put her to bed but woke up less than an hour later. We spent the rest of the evening watching music videos on YouTube. She never said a word, but she gave me a big smile, the first one since Friday. She also held my hand and stroked my arm. Obviously, she can communicate her feelings without words. That makes me feel good.

She’s awake early this morning. I am beside her in bed finishing up this post. I’m not ready to predict what, if any, lasting effects she will have, but I am hopeful that she is going to make a good recovery. She is very resilient.

My Experience with Paid Caregivers: Part 2

In my previous post, I outlined some of the unanticipated things that go along with having paid caregivers. I made the point that family caregivers remain managers of their loved one’s care. These things include dealing with insurance companies, selecting an agency that provides in-home care, (many insurance companies only reimburse fees that come through an agency), and handling the finances. As I confessed, they produced a few new sources of stress.

Today’s post looks at managing the caregivers themselves. That’s something else about which I hadn’t given much thought before our first caregiver arrived. I feel sure that I was heavily influenced by our experience with Kate’s mother in 2000 when we arranged 24/7 care for her in our home. That was a very good experience. The agency quickly arranged for 5-7 people to cover all the shifts. Almost every one of them was with us until her mother’s death over five years later. They were a dependable and competent group that could handle the tasks required for someone who needed “total care.”

When I first engaged caregivers for Kate, I didn’t think much about any special skills for her caregivers. I was simply looking for someone who could be with her while I was away for a few hours. I wanted someone who would be a good companion for Kate. After trying several in the first few weeks, we ended up with two who were with us for an extended time, one for more than four years.

The only problem I encountered was finding people who could establish a close relationship with Kate. I wanted someone she would look forward to seeing. The one who was with us for over four years was the best.

Before Kate had COVID, she was still mobile, able to occupy herself and take care of her personal needs. After her hospital experience, she required total care. That not only meant that I needed more hours of help. I needed caregivers with special training in caring for someone with her needs. That was a whole new ballgame. It’s been a year and five months since then and the management of caregivers has become a big part of my life and is often stressful. Here are some of the reasons.

Like other family caregivers, I value the time that I get away for lunch, meet with friends, or take care of routine tasks like grocery shopping. Some, like doctor’s appointments and my weekly Rotary meeting, involve a specific time, and I don’t like to be late. Inevitably, caregivers are sometimes late or have to cancel. That has presented a problem for me from the beginning. It has become a much bigger issue now that Kate needs more care, and there is a staff shortage.

On a number of occasions, our current agency has been unable to replace a caregiver who couldn’t come. Fortunately, our present agency has “floaters” on the grounds. These are caregivers whose job is to move from one client to another during the day to meet immediate, short-term needs like ours – helping me get Kate out of bed and back in bed that night. Between those times, I can care for her myself. Actually, I like that because her needs are minimal once she is up, and we get to spend quality time together. Even with the backup provided by floaters, I often need to change my plans for the day.

One of the biggest challenges (and another source of stress) is finding caregivers that are a good match for our needs. Kate now requires help with all of the “activities of daily living” (ADLs). If I want a caregiver who is trained for this responsibility, I need a CNA (Certified Nurse Assistant). Not all the caregivers at an agency have this certification, and not all CNAs are equally skilled; therefore, it often takes trial periods with different caregivers before settling into one or more who are best suited for our situation. It can be very stressful when I lose a caregiver and have to locate a replacement.

I’ve come to recognize that the qualities I want in Kate’s caregivers fall into two distinct categories that I consider of equal importance. The first, and more obvious, is the technical skills required to perform all of Kate’s ADLs (bathing, dressing, getting her out of bed, and feeding her. The second is to treat her with tender loving care (TLC) although I don’t expect them to treat her as I do. Our relationship as husband and wife is distinctly different. It is much easier for me to deliver TLC than any caregiver.

On the other hand, I have had only one or two caregivers who made any effort to provide the TLC that I would like. Typically, caregivers just sit in the same room with Kate without talking. That has bothered me because everyone, even people in the later stages of dementia, appreciates being treated like a person. I believe the root of the problem lies in the fact that Kate doesn’t talk much at all. This leads the caregivers to believe that she can’t understand and appreciate their effort to be friendly. I also believe that caregivers’ training provides much less attention to TLC than I think is necessary.

Kate’s early caregivers were better with TLC than those with her now. That was a time when Kate could carry on a conversation more easily. The only way a caregiver can do that now is to “get into her world.” That is not an easy thing to do, even for me. We’ve had only two caregivers (and they were filling in for one of our regulars) who could handle this. Each of them sang songs with/for Kate. Kate enjoyed it, and I was surprised when I came home and found them talking together.

I’ve learned that our situation is a bit unusual for most of our caregivers in that I am an active manager of Kate’s care. I am rarely gone for more than three hours of a 7-8 hour shift. The caregivers are accustomed to providing care without another family member’s presence. Usually, family caregivers leave right after they arrive and return at the time they are to leave. As a result, they can be annoyed and resent any involvement or suggestions from the family caregiver who spends more time at home. That has been a particular problem with one of my caregivers, and it has been very stressful.

That leads me to mention something else that can be a problem – the caregivers’ personality. I have also run into this, and it is with the same caregiver whose other caregiving responsibilities don’t include working in the presence of a family caregiver. I’d rather not go into the details, but this has become the biggest problem I have faced with any caregiver. I am working with the agency to replace her, but so far they have had no luck. Our agency is not alone. Caregivers are in high demand, and people who require total care are often the least preferred cases by the caregivers themselves.

In closing, I should say that I’ve been talking about paid caregivers for in-home care; however, what I have said is also true if one’s loved one is in some form of institutional care (hospital, rehab, memory care, adult daycare, or skilled nursing). Following a stroke, my dad was in skilled nursing for the last three and a half years of his life. I visited with him almost every day. From the first day until the last, I found it necessary to communicate aspects of his care that needed to be addressed. Twice, for example, I arrived to find him in a diabetic shock as a result of their continuing to give him insulin despite the fact that he had missed his lunch. The schedule called for him to get his insulin at 3:00. There was no requirement that he had to eat lunch.

All of this is to say that having paid caregivers is not without its own elements of stress. That often arises from the unanticipated consequences of being the family caregiver, the manager of the loved one who needs care. That said, I wouldn’t be able to handle Kate’s care without our paid caregivers, and I am very grateful to have them.

An Amazing Day

Twelve weeks ago today, Kate suffered a mild stroke. I’m glad to say that she continues to recover although her speech has not returned to its pre-stroke level. She doesn’t speak much at all. When she does, it is not usually intelligible. Most of her speech is in stock phrases or words like “Fine, how are you?” or “Yes, I am.” Sometimes she speaks words in a whisper. That is especially true when we sing together. She really just mouths the words.

Not every day is alike. That has been true during the past three or four years as she moved to the late stages of Alzheimer’s. Throughout this time, I have written about many of our good days. This past Saturday was one of those. It was exciting for me, our caregiver, and the residents and staff who had contact with her.

Let me put that in perspective. Three years ago, I might have said it was a great day. That would probably have related to how cheerful she had been. She can no longer do many of the things she could do then; however, within the context of our lives now, yesterday was truly amazing. It wasn’t that she was just cheerful. She was more alert. Most importantly, she seemed at ease.

It started out much like other mornings. She was awake early but didn’t say a word and went back to sleep. I took my morning walk in the living room. When I finished, I noticed her eyes were open. I thought she might be “up” for the day, but she was tired and rested until the caregiver came shortly afternoon when I left for lunch.

When I returned home, Kate was in her recliner. I walked over and got on my knees beside her. She was alert and gave me a big smile. For the next thirty minutes, I talked to her. I told her how much I liked her smile and that everyone else does as well. I reminded her of our college days, our first date, and some of the experiences we had had during our marriage. She didn’t say much, but it was more than I have heard in months. She made it clear that she understood what I was saying. The caregiver and I were excited.

We went downstairs for our afternoon ice cream and ran into several residents who spoke to her. Each time, she responded with a smile and a word or two. The residents seemed excited as well. She continued to respond to both staff and residents at dinner. Some of them had never heard her speak.

After the caregiver left that night, we had the best evening we’ve had since before her stroke. We have been watching music videos on YouTube for four or five years now, so I’m always looking for new ones. I don’t know what prompted me, but I did a search for TCU’s school song, our alma mater. I found multiple variations sung at football games, a student jazz group, a chorus of music students, and the university band. We lay in bed singing along with them. We had a good time, and Kate laughed a good bit.

When I felt it was time to move on, I brought up a 2012 BBC PROMS concert that was a two-hour performance of Broadway music. We have watched it a number of times before, but Kate was especially attentive that night. For much of that time, my head was on her shoulder, and we held hands. It was a perfect end to an amazing day.