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Reflections on Living with Alzheimer’s: Part 1

Since Kate’s diagnosis twelve years ago, I’ve connected personally with a number of other couples who are traveling this same road. I’ve also become acquainted with the experiences of 25-30 other caregivers who tell their stories in books, blogs, and podcasts as well as many others via Twitter and Facebook. It seems clear to me that Kate and I have had an easier time than most people – at least the ones with whom I am familiar. We have been very fortunate. But why?

There are many reasons. Most importantly, Kate has been easy to care for. She has never experienced the kind of problems that often accompany the disease. She accepted her diagnosis gracefully and hasn’t experienced any anger and aggressiveness that sometimes occurs with dementia. As her Alzheimer’s progressed and I had to assume a larger role in her life, she accepted that as well as she accepted the diagnosis. In late-stage Alzheimer’s she requires total care, but she has adapted well.

Kate’s only signs of anger or aggressiveness occurred after her 8-day stay in the hospital with Covid in November 2020. She was traumatized by the experience and somewhat belligerent when we changed and dressed her. That dissipated over a period of several weeks. Even now she doesn’t like it when we have to turn her in bed and audibly expresses her displeasure. I understand. I wouldn’t like that myself.

There are quite a few other things that have made living with Alzheimer’s easier for us. I divide them into two general categories – Pre-Diagnosis and Post-Diagnosis. In this post, I’ll deal with our pre-diagnosis situation.

Pre-Diagnosis

  • Neither of us had any other chronic health issues that demanded our attention. That’s not true for a lot of people our age.
  • Kate’s diagnosis came at the end of our working years. She had already retired, and I was transitioning to retirement. That meant we had time to focus on living well with Alzheimer’s.
  • We both shared the same interests including music, theater, movies, eating out, and travel. They all played a significant role in our marriage prior to the diagnosis and increased significantly afterward.
  • We were not constrained by financial difficulties that would have made it difficult to support the expenses incurred along the way. Our long-term care insurance is a good example. Except for the first 90 days, it has covered every penny of her care for the past 5 ½ years. That amounted to almost $20,000 a year in the first three years. During that time, we had in-home care 4 hours a day, 3 days a week. The past two years that has totaled more than $70,000 a year. That covered 8 hours a day 7 days a week. Fortunately, our policy has no cap on the amount of money or any limit on the number of years it will continue to pay although it does have a daily cap of $330.
  • For two years I directed a master’s degree program for counselors who worked with alcohol and drug abusers. In addition, I was active for almost ten years in our church’s Stephen Ministry, a program that assists church members who face a variety of personal, family, and work-related difficulties. I believe these experiences have made me more sensitive in my role as Kate’s caregiver.
  • There is one other thing that was especially important. Prior to Kate’s diagnosis, we spent 21 consecutive years caring for all four of our parents and my dad’s significant other following my mother’s death. Three of them had dementia. Kate’s mother lived in our home for 5 ½ years with 24/7 in-home care. My dad was the only one living at the time of Kate’s diagnosis. He was in skilled nursing following a stroke.

This experience gave us a good bit of knowledge about health issues, medications, professional in-home care providers as well as long-term care facilities. We were far from knowing it all, but we began with greater familiarity with caregiving and dementia than most people facing our situation. That made a difference in how we approached “Living with Alzheimer’s.” I’ll say more about that in my next post.

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The Importance of Family for Kate and Me

During the early years of Kate’s Alzheimer’s, I read an article that dealt with the value of caregivers having “a team.” The author meant a team of professionals, especially medical, legal, and financial. I’ve taken that seriously and extended that to a large percentage of the people I encounter every day. That includes all of our friends and acquaintances as well as servers in restaurants and strangers that offer gestures of kindness. Our team has grown significantly since we moved to a continuing-care retirement community a little over a year and a half ago. Both the residents and staff have played a vital role in our lives.

Although all of our family members live out of state, they, too, have played a key role on our team. Most of our contact involves email and phone calls, but they also visit us.

Initially, Kate didn’t want to tell anyone about her diagnosis. As time passed, I realized the value of knowing about her Alzheimer’s. The moment the doctor gave us the test results, the two of us began to make the most of whatever time remained for us. More than we had done previously, we began to focus on enjoying every minute together. It has paid great dividends and is still doing so twelve years later.

I wanted our children to have the same benefit, so I finally told them. I’ve never regretted it. Telling them was the catalyst that opened the door to something I had long believed was an important parental responsibility – to include children as partners in the last chapters of our lives. From that day to the present, I’ve kept them fully informed of the ups and downs we experience. They have responded in kind. They call frequently to see how we are doing, and their visits give them a personal glimpse of our lives. Had I not told them and kept them up to date, I would have missed out on having the most important members of my team.

I was prompted to comment on their contributions because both of our children paid us a recent visit. It was a particularly nice one. They have been here a number of times and are beginning to know other residents and staff. They have a much clearer appreciation of the benefits we receive here. They supported our move from the moment I mentioned that I was thinking about it. They are also happy and, perhaps, relieved that we live in a place that provides so much support. They don’t have to worry about us as much as they might have if we were still living in our home.

Most importantly, they enjoyed their time with Kate. They were here for several days which gave them an opportunity to observe her special moments and see some of the same qualities they recall from childhood.

We don’t know exactly what challenges lie ahead of us, but I am most appreciative of the support we have from our family. That is one more reason “Living with Alzheimer’s” has been easier for us than it is for many other couples, and I am very grateful.

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“Living with Covid” While “Living With Alzheimer’s”

It’s been a little more than two-and-a-half years since Covid invaded our world. We all have stories we can tell about the ways in which that has affected us. Kate and I are no exception.

Although Covid has had a continuous impact on us, there are three specific events that are worth mentioning. The first occurred in mid-March 2020. That’s when restaurants and other businesses began to close. Prior to that, Kate and I had been eating out for lunch and dinner every day for eight or nine years. It made life easier for us than my preparing dinner and gave me more quality time with Kate. Along the way, we also went to Panera almost every morning where Kate got a muffin. In the afternoon, we often went to the café at Barnes & Noble. The greatest benefit of these daily routines was preventing us from being socially isolated. We often saw friends at these locations and became acquainted with servers, managers, and other personnel.

The pandemic brought that to an abrupt end. During the first week or two of the pandemic, Kate also lost her ability to work jigsaw puzzles on her iPad. That was her last remaining self-initiated activity. Daily living suddenly became less exciting for both of us. As Kate’s caregiver, that meant I had to work harder to keep her occupied.

The change in our active routine left her bored much of the time. She started napping more throughout the day. I read to her and played music for her, but that wasn’t enough. I also gave her tours of our house, pointing out pictures and furniture that had some connection to her and her family or to special events in our lives.

In spite of my efforts, there were moments when she wasn’t engaged in any activity. That led to her resting more during the day. We had lost a significant portion of the experiences that had given us so much pleasure before.

Of course, the biggest impact of Covid was that both of us tested positive for the virus just before Thanksgiving in 2020. Kate was in the hospital for eight days without me. The experience was traumatic for her. She was so frightened when she returned home that we were unable to get her out of bed for seven weeks. Before getting Covid, she was already on the verge of losing her mobility. Being in bed for so long pushed her over the edge. She has never walked since.

Our third experience with Covid began almost two weeks ago when I tested positive for the second time even though I had received all of the vaccinations and boosters. It’s been a mild case. My only symptom was a sore throat. The policy here in our retirement community is for people with Covid to stay in their apartments for the first five days. For the next five days, you can leave the apartment if you are wearing a mask, but you can’t eat in any of the campus venues.

The social isolation we experienced was reminiscent of the early days of Covid when we could no longer go out to eat. This appears to have had a greater impact on me than on Kate. I miss the contact with other residents and staff. They have played a major role in our lives since we moved here a year and eight months ago. I miss that and will be eager to get back to our normal routine starting today. That’s just in time for a visit from our daughter and son this weekend. We’ll have much to celebrate.

My biggest concern has been the possibility of Kate’s getting the virus. By now, it looks like she has escaped. The biggest and best surprise is that she had four or five outstanding days while we were restricted to our apartment. Not surprisingly, much of that involved music. In addition, however, she has been talking more. That has been especially noticeable with two of her caregivers. One of those is our primary caregiver with whom she feels quite comfortable.

On Sunday, one of our weekend caregivers took an extended amount of time to go through one of Sarah’s family photobooks with her. Kate didn’t seem to notice the photos, but the caregiver told her about the information explaining them. Kate not only took an interest, but she also began to talk to the caregiver. The next thing I knew they were having a semblance of a normal conversation. It wasn’t completely normal because much of what Kate said was impossible to understand. This was especially striking to me because Kate has never shown any special connection or feeling for either of our weekend caregivers.

The story doesn’t end there. When it was time for dinner the conversation ended. Kate took the caregiver’s hand and kissed it. Then after getting Kate into bed, the caregiver told her goodbye. I said, “Wasn’t it nice to have Malia with us today?” Kate looked up at her and said, “Thank you.”

Last night, we had a wonderful time together. Like any other night, we watched YouTube music videos, but there was a difference. Kate has never been as enthusiastic about symphonic music as I have, but last night I played Dvorak’s Symphony No. 9 and Tchaikovsky’s Symphony No. 5 back-to-back. She loved both works, and I was thrilled.

As the music played, I did two things that I believe facilitated her response. First, I explained what was happening as the orchestra moved from one movement to another. For example, at the last portion of both symphonies, I let her know that the music was going through a buildup to the grand finale when the tempo would increase and the music would be much louder. Second, in several portions of the music, I emphasized the rhythm by audibly saying things like “bump da da bump da da bump, bump, bump.” At the same time, I held her hand and moved her arm back and forth. She was fully engaged and laughing. I hope we’ll be able to repeat our performance again soon.

Thus, I am coming to the end of our quarantine with a good feeling that Kate appears to have missed Covid, and she has had an extraordinary series of moments that have been very special to both of us. Life is good, and I am grateful.

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A Brief Update

Once again, I find that I am behind on another blog post. On top of my usual excuses is that I’ve had computer problems that were finally solved yesterday. During the past two weeks, my computer wouldn’t connect to our Wi-Fi network or any other one. In the meantime, I’ve been occupied with Kate (many good moments) and other personal issues like an infection in one of my toes and pain on the right side of my other foot. Those involved several doctor’s visits that have solved most of the problems.

The best news is that Kate’s improvement has continued over the past few months. That has given us more quality time together which has boosted my spirits greatly. I’ve been particularly pleased that our evenings are once again very special times. Our love for each other is more consistently evident now than in quite a long time.

I continue to be pleased with our new primary caregiver (8 hours daily from Monday through Friday). I feel less stressed now than I did a few months ago, and my blood pressure is staying at normal levels. Prior to replacing the previous primary caregiver, my blood pressure was bouncing periodically to higher levels than those to which I had been accustomed.

I feel the need to stress again that I don’t mean that her Alzheimer’s is any better than before, only that she is more comfortable and at ease, than she had been since her hospitalization with Covid almost two years ago in November 2020. That, our move a few months later, and then a stroke were all significant events that brought about dramatic changes in our lives. It hasn’t been easy. Some of those changes have been permanent, for example, Kate now requires total care with all her ADLs (activities of daily living). Our world is much smaller now; however, we continued to enjoy life and each other. And I am grateful.

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Selfcare (With a Lot of Help From Others)

Despite the challenges and low moments while “Living with Alzheimer’s,” I’m upbeat most of the time. That is only because I have lots of help. Most of that involves my contact with other people. I have remained as socially active as I could since Kate’s diagnosis eleven and a half years ago. Since our move to a retirement community a little over a year ago that has increased. The activities of the past ten days are a good example.

I’ve always been a creature of habit and have a routine for each day of the week. Most of those involve engagement with other people. That begins on Monday with my weekly Rotary lunch. I’ve been a member since 1983, and it’s good to connect with people I have known for quite a few years. I also eat out (outside the grounds of our retirement community) for lunch on three other days of the week. Every Tuesday and Sunday, I eat lunch at two different restaurants at which Kate and I ate regularly for eight or nine years before the pandemic in March 2020. Since she has been unable to get out, I go alone; however, I know the managers and staff, and I am usually served by the person who has served us/me for years. Since our move, I have found a new spot for my Saturday lunch. As a regular, I’ve gotten acquainted with the owner, my server, and a few others who work in the kitchen.

The other three days of the week I have lunch in the café downstairs in our building. It’s a very friendly community. We’ve lived here just over a year, and I’ve eaten alone fewer than five times. On the way in, I usually see someone who is already seated and join them for lunch. If I start out alone, someone joins me.

Some days I find myself in more conversation than expected. One of those occurred last Thursday. In advance, I had invited a couple to join me. We were seated only a few minutes when someone else asked to join us. When we finished, I went down to the main dining room to return a cloth napkin that Kate had brought back to the apartment the night before. As I entered, I saw another couple who had just been seated for their lunch. They asked me to join them. When I told them I had just eaten, they said, “Why don’t you have a cup of coffee with us?” I accepted their invitation. We spent the next hour in conversation.

Every afternoon at 3:30, the caregiver and I take Kate to another café on the grounds for ice cream. The seating is beside the main hallway that links all the buildings, eating venues, meeting rooms, a gift shop, and a hair salon. We spend an hour there and have conversations with residents and staff as they go from one place to another. I think this is good for Kate and know it’s good for me.

At 4:30, we go directly from having ice cream to dinner. That’s yet another time for social contact. That begins with the staff since there aren’t that many other residents who eat as early as we do. Everyone on the staff knows all of the residents. They treat us very well. During any given meal, we may have as many as 5-10 different staff drop by our table to say hello and often chat for a few minutes. As other residents arrive, some of them stop by our table. As we leave, we stop at several tables to do the same for others who arrived after we did.

That’s the daily routine, but there are also many other impromptu encounters. This past Sunday, the server had just brought my coffee when a couple I know was seated at a nearby table. They asked me to join them as they have done on a couple of other occasions. It had been a while since I had seen them, so I accepted. All three of us are big talkers, and we spent the next hour and a half talking and eating.

There are always other unanticipated events that keep me going. Two of those occurred during the past two weeks. One of those involved a new caregiver. She replaced one who was quite good with the basic CNA (Certified Nurse Assistant) skills but not so good with “Tender Loving Care.” Our new caregiver is adequate with the basic skills and very good with TLC. The second day she was with us I walked into the living room where Kate was looking at the caregiver and smiling. They were holding hands. That never happened with the previous caregiver. I was elated.

As you would expect, how Kate is feeling has the greatest impact on how I feel. Her Alzheimer’s, Covid, and stroke have left her less upbeat than she was before. She rarely says a word until mid-afternoon; however, some days she is more cheerful than others. She’s had a number of days like that during the past two weeks.

I shouldn’t close without mentioning the support I get from those who read this blog as well as my followers on Twitter. You have often given me words of encouragement at moments when I needed them most.

It is true that I am not as active in the local community as I used to be, and I don’t participate in many of the events on the grounds of our retirement community. Nevertheless, the things I outlined above boost my spirits considerably. I’m living well and grateful for that. I know of many caregivers who are not so fortunate.

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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.

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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.

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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.

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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.

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My Experience with Paid Caregivers: Part 1

Sometimes being a #caregiver feels like I’m on a merry-go-round that goes faster and faster while I try and keep my balance. Life as mom’s caregiver has changed since she moved into Assisted Living, but the merry-go-round ride continues. https://advocateformomanddad.com/stop-the-merry-go-round/…

The quote above is from a tweet by Debra Hallisey, author of the blog, “Advocate for Mom and Dad.” It caught my attention because I was in the middle of drafting the following blog post that deals with a similar experience.

Typically, people who haven’t been caregivers of a loved one with dementia can’t imagine everything that is involved, but they do know or usually assume that it can be stressful. Thus, very early in our journey with Alzheimer’s, people began to ask me if I had “help” with Kate. For 6 years after her diagnosis, my answer was “no,” but I had thought about it long before then.

I was influenced by the experience with my dad who cared for my mom with dementia. My brother and I repeatedly tried to get him to bring in help, but he was very resistant. As Mom’s dementia progressed, I could see the toll it took on him.

I was determined not to let the same thing happen to me. We have long-term care insurance, and I planned to take advantage of it. The big question was when. The answer came in 2017 when I began to feel less comfortable leaving Kate alone. I had a regular Rotary meeting on Monday, and I was going to the YMCA on Monday, Wednesday, and Friday afternoons. I also needed time for a variety of other routine chores. I arranged for help before it was necessary. At that time, the caregivers’ responsibilities were minimal. I didn’t think of them as caregivers but as sitters or companions. All they had to do was be with Kate. 

Looking back, I believe engaging in help was a wise move. That’s been especially important since Kate’s experience with COVID-19 just before Thanksgiving in 2020. That coincided with her continued decline related to her Alzheimer’s. Suddenly, I really needed help. I arranged in-home care for 7-8 hours a day, 7 days a week starting the day she came home from the hospital. The caregivers were, and still are, doing things I wouldn’t be able to manage by myself.

While caregivers have minimized the stress that goes along with Alzheimer’s, in-home care hasn’t eliminated stress altogether. In fact, my stress now is greater than at any other time since Kate’s diagnosis. That is something I didn’t anticipate, and I don’t think I’m alone in that. It turns out that even with paid caregivers, family caregivers continue to play an essential role as managers of their loved one’s care. Quite often, that isn’t easy.  Let me explain.

To begin with, working with my insurance company and a home-care agency required more time than I expected. It was rare for me to get through to the insurance company on one call. After completing the appropriate forms, Kate had to go through an assessment interview to ensure that she was eligible under the terms of our policy. That was repeated twice a year for the first few years and is now an annual requirement.

Simultaneously, I had to select an agency. The social worker with Kate’s primary care physician helped me sort through that. Then, I had to initiate the paperwork to get the agency approved by the insurance company. That didn’t happen immediately.

Finally, it was time to select our caregivers. We went through several before settling on two, one for Monday and the other for Wednesday and Friday. Although I was uneasy about leaving her, I see now that I had a very good situation. That was because Kate didn’t need much care. It was also before the pandemic made it more difficult to find and retain caregivers.

I wanted caregivers who had the skills appropriate to Kate’s needs, someone that Kate liked, and who would stay with us for an extended period of time. During the first four years of in-home care, I was fortunate to have one caregiver who was with us the entire time. She has since taken another job. I hated to lose her because she was the caregiver with whom Kate was most comfortable. I don’t believe that was because she had been with us far longer than anyone else. She just had a personality that Kate and I both found appealing.

During the pandemic and after Kate had gotten COVID, I had to deal with an additional agency because our original one was unable to provide the necessary caregivers. Since then, we must have had more than ten different people who worked for varying lengths of time.

Adding another agency introduced a different problem. When I first met with the owner of the agency, we talked about the process of getting them approved by our insurance company. He said something that made me believe their agency would do all the paperwork. That sounded great to me, but it turned out that each of us misunderstood the other. Thus, they worked for us for several months without getting approved. I only knew because I wasn’t getting reimbursed. When I explained the situation to the agency, they said they would take care of it, but it didn’t happen. To make a long story short, I ultimately terminated the agency. Then I spent a month or more working with our insurance company to get our reimbursement. The good news is that I finally got it, but it took a lot more effort on my part than I think it should have.

The retirement community where we live now has its own home care agency. That has simplified things, especially managing the finances. They send our insurance company a summary of services at the end of each month. Two months later, I receive our reimbursement. Although the financial aspect of caregiving is working smoothly, there is still one other aspect of caregiving that presents a problem. That involves the caregivers themselves.

I’ll save that for another post, but my point remains the same: Family caregivers are always needed to manage and coordinate the services of paid professionals we engage for tasks that we can’t do ourselves. That management responsibility can also be stressful, even when professional services are delivered in facilities like assisted living, memory care, or skilled nursing.