Welcome to Living With Alzheimer’s

March 1, 2021

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s about two years. We both tested positive for COVID two weeks before Thanksgiving, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but is still recovering from the trauma of being taken to the hospital by ambulance and the whole hospital experience. Although our lives have changed significantly, our relationship remains strong.

When she returned home from the hospital, I increased our in-home care to 7-8 hours a day seven days a week. She has made a gradual recovery but continues to be frightened anytime we have to move her in anyway while caring for her essential needs. For years, she has been frightened by many things, especially sudden noises. Her hospital experience added an additional source of fear.

I don’t know what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

Reflections on Leaving Our Home

Two years ago this month, I took a big step and made a down payment on an apartment in a local continuing care retirement community (CCRC). I was motivated to do this for at least two reasons. First of all, Kate and I cared for our parents for twenty-four years. We didn’t mind that. We would do it all over again if faced with the same situations; however, we wanted to make sure our children’s responsibilities for our care would be minimal. I don’t recall that we talked about a specific way to do that, but I felt that we needed to plan for an easy transition to the last chapter of our lives. Neither of us wanted to put them in the often awkward position of letting us know that it was time to give up driving or to move out of our home. Living in some type of senior living facility was always an option. I didn’t establish a specific time frame for a move or assume that we would have to move at all. I approached life a step at a time and was prepared to make changes as I thought needed before our children would feel the need to step in.

That leads to the second reason for my decision. Kate was approaching the last stage of Alzheimer’s. I was handling things with minimal help, four hours of paid help three afternoons a week. She had become totally dependent on me, and I began to wonder what would happen to her if something happened to me. That was the catalyst that led me to explore a CCRC. We have several local options, and, in the past, I had visited at least four of them. I’ve known quite a few people who lived or had lived in the one I chose. It was one of two that were located in places I felt would be convenient for us. I knew the marketing director and that they were about to begin construction on a new building for independent living. I made an appointment with him. Two weeks later, I gave him our down payment.

I haven’t waivered in my decision since that time. As time passed, Kate declined, and the pandemic hit us. At least one of my good friends has asked several times if I were eager to make the move. The answer was and still is that I am not eager, but I believe it’s the right decision. It provides access to all the options we might need in the future. That includes assisted living, memory care, skilled nursing, and rehab. In addition, the doctor who established the geriatric practice with which Kate’s doctor is affiliated has opened a practice on the grounds in the building next door to ours. Yes, he makes house calls as well. I haven’t made the change for Kate just yet, but her doctor and I have talked about it. She actually suggested that as a good possibility. I intend to explore it further once we move in.

Having made that decision two years ago, I’ve learned a couple of things. One is that two years is not a long time. It passed quickly. Had I been eager to move, I’m sure I would have thought the day would never come. That doesn’t mean that I have any regrets about my original decision. I don’t. I also believe I made it at the right time. I didn’t want to move when it might have been disturbing for Kate. Her decline during that time has been significant. I don’t expect her adjustment will be difficult although I feel equally sure she will notice some difference in her environment.

The second thing I’ve learned is that a move like this is stressful. I’ve had an abundance of help. In addition to Kate’s caregivers and the woman who cleans our house, I engaged three other people to assist me with different aspects of the move. One is the decorator Kate has worked with about thirty years. She helped me decide on the furnishings to take with us. I know someone else whose business is assisting seniors who want to downsize. She is handling all aspects of the physical move itself. The third is a woman who has cared for the plants in our yard, on the patio, and front porch. She has also taken care of our holiday decorations. She and I have been worked together 6-8 months getting rid of things in our closets, cabinets, and attic.

Despite this assistance, I have found it impossible to turn over everything to them. There are just many decisions I need to make myself. In fact, I view this move, possibly our last one, as a continual process of decisions regarding what is important in life. Numerous times, I have looked at boxes of “things” we have accumulated over the years and thought a person in the ministry could preach a year’s worth of sermons about them. Most of them are of little value to me now. I’ve discovered they are also of little value to our children or anyone else.

That said, I’ve found that what matters most are intangibles. Uppermost in my mind are the memories that I will take with me. Recently, our weather has been perfect for getting outside. Kate, her caregiver, and I have spent time as much time as we can on our patio enjoying the spring flowers and watching the new growth of leaves on the forest of trees behind our house. It’s been a therapeutic break from the preparations of moving and brought back memories of the good times we’ve had here. I especially remember special celebrations like my parents’ 65th and 70th anniversaries, my dad’s 100th birthday and those leading up to it starting with his 90th. There were also grandchildren’s visits and the time spent in and around the pool. I would also include the almost 5 ½ years Kate’s mother spent with us with 24/7 care provided by 6-7 caregivers who became part of our family. But most of all, I think of the good times with Kate before and after her diagnosis, and it is all but certain we will have more of them during the next week that we are here. I will leave with a sense of satisfaction and gratitude for these memories and many more.

The other day I thought about the move my parents made from their home to live close to us. My dad was the same age I am now, nearing 81. They had lived in South Florida much longer than we have lived here. The move was stressful for him. My mom was in the early stage of dementia. He did his best to see that she got acquainted with people. One of the first things he did was join a local senior center. He became active in Kiwanis and a seniors writing group. He loved his computer and kept up an active email correspondence with friends from the past and many new ones. He adapted very well and lived to be 100. I’m optimistic that I’ll do the same.

A Happy Easter

I should preface this post by saying that I don’t want my readers to think our lives are all smooth sailing. They are not. We experience many of the same or similar challenges that are common among people with Alzheimer’s and their caregivers. I wish Kate had never received her diagnosis, but she did. From the beginning we wanted to make the most of a bad situation, and we have.

During the past ten years, our lives have become smaller in that we can’t do as many things as we used to. The surprising thing to me is that we continue to enjoy life and each other, and some moments, even days, are very special. I reported on one of those in my previous post. Since then, except for a few moments, we’ve had a series of good days. That was capped off by a very nice Easter.

Kate is usually asleep when her caregivers arrive at 11:00. Yesterday, she would have been late for a sunrise service, but she was awake before 9:00. Like other mornings recently, she smiled when I went into the room. In fact, that has become the norm sometime in the past few months. She displayed no sign of confusion or fright. I’m not sure she knew my name, but it was clear that she recognized me. Except for my knowing she is confined to bed without our help, she seemed as normal as she was before Alzheimer’s entered our lives.

Because she was up early, I was able to take care of a few things that we usually do after the caregiver arrives. That included getting her meds, yogurt, and juice. After that she wanted to rest a while. Once the caregiver was here, I cooked her breakfast. We gave her a little break and then changed her and got her out of bed and into her wheelchair.

Kate and her caregiver watched an Andre Rieu concert on YouTube while I went to lunch at Andriana’s, something I have been doing almost every Sunday for the past few months. It’s different going without Kate, but I enjoy the whole experience. I always get one of two of my favorite salads with blackened salmon. We’ve eaten there on Sundays for years. We know the servers and they know us. In addition to our regular server who is very attentive, several others always stop by the table to say hello and check on Kate. Yesterday, one of them was especially excited to tell me that she is in her thirteenth week of her first pregnancy, and she’s going to have a boy. The manager brought my salad, and we chatted briefly. Since I’ve been going alone, I’ve also ordered a meal that Kate and I can split for dinner.

Yesterday was as near perfect a day as it gets. The temperature was in the low-to-mid-70s, and the dogwoods and azaleas in our back yard are in full bloom. When I got home, we took Kate outside on the patio.

Even in the mid-70s, it can get hot when seated in direct sunlight, but we sat in a shady spot that was just right. The first couple of times we took Kate outside, the caregiver and I clearly had a good time. We think Kate did as well, but she was not very demonstrative. The last two times she has enjoyed the change in scenery, and yesterday, she was enthusiastic. She loved looking at the new growth of leaves on the trees as well as colorful flowers. It was a pleasant experience for the three of us.

We went inside for dinner ninety minutes later. The dinner itself was also good. Kate always enjoys her food, and this time was no exception. Then we took her back to the bedroom and got her ready for bed. Kate was tired and rested while I listened to Tchaikovsky’s fourth and sixth symphonies on YouTube. Kate wasn’t talkative, but we both enjoyed the music and being together. It was a nice end to a very Happy Easter.

A Touching Moment

Despite many challenges that accompany Kate’s Alzheimer’s, I attempt to communicate that we also experience Happy Moments. I believe I’ve been successful in that, but some experiences can also be described by other adjectives. One of those occurred two days ago. It was “touching” for me, her caregiver, and a friend who had dropped by to say hello. Let me explain.

Kate is a member (now inactive) of P.E.O., a women’s organization that supports educational needs of women. Kate is a former president of her chapter and has always liked and been impressed with another woman who preceded her as president. Several years ago, we bumped into her in the lobby of a local movie theater. We were leaving as they walked in. After chatting briefly, Kate said, “Who is that? I recognize her, but I don’t know who she is. I liked her.” I thought that was a beautiful example of the loss of her rational abilities and the strength of her intuitive ones. The feeling she had for the woman had clearly stuck with her.

Yesterday, she stopped by to say hello on her way to meet a neighborhood bridge group. I was pleased that Kate was awake early and in a cheerful mood. When the friend arrived, I took her into the living room to talk with her. It had been a long time since she had seen Kate, and I wanted to update her and let her know that she might not recognize her. In fact, shortly before I had told Kate she was coming, and she had no idea who I was talking about. Nothing I said rang a bell.

Kate was in bed. I entered ahead of her friend and explained that she had a surprise guest who had come to see her. The friend walked to her bedside, and Kate responded like the Kate I’ve always known as a welcoming host to her home, one of the things passed down from her mother. With a big smile (something else she got from her mother), Kate reached out her hand, and her friend took it. Then Kate took her other hand and stroked the top of her friend’s hand.

She asked the friend to sit down on the bed beside her. That began a ten-minute conversation between the two of them. Kate’s words didn’t come out the way she would have wanted, but she communicated a sense of recognition and love for her friend. While they talked, I wiped tears from my eyes just observing the poise and feeling that Kate conveyed to her friend. There have been many other occasions when I hoped she could respond in the same way to a friend or to our daughter and son, but she couldn’t. Had it not been for her being in bed and getting her words mixed up, she would have been just like always.

I’ve heard and read accounts of other caregivers who have observed surprising experiences like this with their own loved ones. This was not the first time she has surprised me with things she has said or done, but this was the most touching I have witnessed. It comes during a week when she has gotten along particularly well.

It was an opportune time for her friend to visit, but there was more to it than that. The friend was very calm in demeanor and tone of voice. She spoke slowly and in short sentences. Most importantly, her words also conveyed an interest in Kate. I believe one of the problems Kate has is feeling left out because so much of the conversation around her is among the other people who are present. I think that is because people don’t know what to say to someone with dementia.

We caregivers are always trying to understand why our loved ones say or do things, but what is most important is that we treasure moments like these. I will hold on to this one for a long time.

Celebrating Happy Moments in Late-Stage Alzheimer’s

Although Kate’s recovery is much slower than I would like, I rejoice in the Happy Moments we continue to experience. As I’ve said in other posts, our evenings are very special. That’s not to say that they are the only special moments of the day, but they are the most consistent. It’s nice to have a day that ends well.

One of our caregivers was surprised when I told her about that. She wondered what we could be doing that would be so special. I’m sure she asked because Kate often seems so passive when they are here. In addition, when she is talkative, most of the caregivers don’t enter into the conversation. Much of what she says is rooted in delusions. That may be why they tend to ignore her. They don’t know her well, and it isn’t easy for them to live in her world by participating in her delusions. It’s much easier for me to do that.

I believe our good evenings occur because she senses that when it is just the two of us, she can relax. I won’t do anything to disturb her. She almost always recognizes me as someone familiar. That contrasts with her caregivers. She has 5-7 of them and all but one is new since Thanksgiving. She hasn’t developed a strong relationship with them. Apart from the length of time we have been together compared to her relationship with the caregivers, I am also more careful to give her my attention. My impression is that she may feel more alone when she is with her caregivers.

Night before last was an especially good night. We were both propped up in the bed watching a 1993 Barbra Streisand concert. She was in a good mood and enjoyed the concert more than most music videos. We talked about the concert and especially Streisand. It’s important to note that it wasn’t a time when her Alzheimer’s symptoms disappeared. Throughout the concert she repeatedly asked Streisand’s name, but she liked what she saw and heard. She was also very loving. She held my hand and ran her hand across my arm, and we expressed our love for each other. When the concert was over, it was time to call it a night. Before doing so, Kate asked if I could take a picture of us. I take that as another sign that she had a good time.

It’s not unusual for her to be both puzzled and fascinated about her top sheet and bed spread. She often asks me what they are. I explain that they are something to keep her warm during the night. She has another purpose for them. They’ve become a convenient “Fidget Pillow.” For those who are unfamiliar with fidget pillows, they are often pillows with a variety of buttons, ribbons, or other objects. Many people with dementia find them fun to fidget with. They come in a number of other forms than just pillows. I bought one for Kate a few months ago, but she’s never taken to it.

Her top sheet or bedspread has become her personal substitute. She uses two hands about 18 inches apart to pick up either the sheet or bedspread. While holding it, she pulls her hands together to make a “shape.” She continues to make different shapes and asks my help and approval of the work she is doing. We did this together for almost thirty minutes last night. She enjoyed it and admired her own “works of art” while I enjoyed being part of her fun. This is something else in which her caregivers are not likely to be a participant, and I understand how they might think this is just a silly game. For me, however, it’s rewarding to see her enjoy simple things like this. After all, it’s difficult or impossible for her to engage in many of the same things that appeal to us. As they say, “It’s important to live in her world.”

How is Kate?

I am often asked how Kate is doing. Typically, these are situations in which I have little time to elaborate. For that reason, I’ve developed short answers that do the job. For years, I said, “She’s doing remarkably well.” During the past two years, I’ve been prone to say “She’s declining, but we still enjoy life and each other.” More recently, I’ve said, “Life is more challenging now, but we still enjoy life and each other.”

Her bout with COVID, especially her hospitalization, brought about the most abrupt changes she has experienced during the ten years since her diagnosis. Now when people ask me about her, I say, “She’s making progress but very slowly.” Here’s a fuller story.

Before we got the virus, Kate had entered the last stage of Alzheimer’s. That involved lots of delusions and hallucinations. In addition, I was concerned about her long-term mobility. It was becoming more difficult for her to get up from a seated or a prone position. For years, she had been frightened by sudden noises. I had to warn her when I was going to get ice from the ice maker. Even when I did that, she was often shocked. Along with that, she became uneasy going up and down steps. Her physician and I agreed that she would probably skip a walker and gravitate to a wheelchair because she was unlikely to be able to maneuver a walker. A week or two before she tested positive for COVID, I had to enlist the help of the owner of the Mexican restaurant where we had just finished our meal because she was afraid to step off the curb to get in the car.

A large percentage of the time, she did not know that she was in her own house. Thus, the experience of being taken from her bed to an ambulance and then to the hospital for eight days must have scared her to death. I have compared it to a person’s being kidnapped. Even though the hospital was a place for her to get help, she wasn’t in a position to grasp that. I am sure she was frightened off and on during her entire stay.

She quickly recovered from the physical effects of the virus, but she remained traumatized when she arrived home. We were able to get her up for less than an hour her first day home; however, she was too scared to get out of bed for the next seven weeks.

Today marks the sixteenth week since returning from the hospital. She has made slow, but very gradual, progress. Her physical recovery from the virus hasn’t been a problem. She never had any fever or breathing problems. She recovered quickly while in the hospital from the symptom that took her to there – weakness.

After coming home, we had Home Health for two months. Physical therapy was the primary object of their care. They discontinued service because she wasn’t responding as quickly as they had hoped. Once again, the problem wasn’t anything physical. It was, and still is emotional. She is simply frightened almost every time we try to move her in any way. That involves changing her, lifting her out of bed, putting her into her wheelchair, and putting her back in bed. During these moments, she can be quite combative. She often yells and screams at us. Sometimes she tells us to “Shut up” and “Get out of here.” On some occasions, she presses her nails into my arms and those of her caregivers.

There is one good thing. Her anger usually ceases as quickly as it comes. It is not unusual for her to apologize or thank us after each event. Frequently, however, she is very passive, non-talkative. That normally lasts a few minutes but can last as long as an hour or more.

During the first few weeks after her hospital stay, we did our best to minimize the problem because we felt we were continuing the hospital experience and didn’t want to aggravate her emotional problem. After seven weeks, we decided she needed to get out of bed if she was going to make the kind of recovery we hoped for. We noticed there were occasional times later in the afternoon when she wanted to get up and took advantage of it. At first, the caregiver (with a little help from me) lifted her from the bed to her wheel chair. We found that difficult and gravitated to using a Hoyer lift. Now, that’s the only way we get her up from her bed or a chair which we do four or five times a week. One of the things I like about this is that she and I get to eat dinner together at the table.

The lift works well, but Kate often protests at several points in the process. Each step involves maneuvering her in some way. Fortunately, once she is suspended in the air, she generally relaxes. This process is definitely less offensive to her than changing her, and we depend heavily on it.

My role in everything is to make Kate feel more comfortable. When we change her or get her ready for the lift, I get in bed and tell her what we are going to do. I also tell her that she can help by remaining calm while the caregiver does what she needs to do. When it’s time to turn Kate on her side, I ask Kate to give me a hug, and I put my arms around her. I count to three and pull Kate toward me while the caregiver pushes in the same direction. Kate usually screams or yells, but, once on her side, she is quiet. She holds me tightly and general strokes my back, and I do the same to her. Once in a while, I say, “We never imagined we would be doing this when we first married.” Despite the intended humor, this is a touching moment for me. Throughout the process the caregiver and I tell her she is doing well and thank her for helping us.

Over time, Kate has protested much less than before, but she continues to resist at least minimally most of the time. Last week she went several days with little combativeness. Then over the weekend, she gave us problems. What I hope for is that she will gradually sense that we are not going to harm her, but I am prepared to accept that she may never walk on her own again.

The best thing I can say is that she is happy most of the time, and our relationship never been stronger (except at those moments when we move her). Our evenings after the caregivers leave continue to be the best part of our day. This may not last forever, but I will always be grateful for moments like these and so many others we have shared for almost fifty-eight years.

Why Are Posts Becoming Less Frequent?

From time to time, readers ask if everything is all right. This occurs when the time between posts is longer than usual. The reasons for these occurrences has changed over time but always reflects what is happening in my life. The other day I looked back on the number of posts for each year since Kate’s diagnosis in 2011. It reveals an interesting pattern. (See the figures below.)

2011                62

2012                64

2013                64

2014                82

2015              123

2016              133

2017              236

2018              549

2019              397

2020              167

During the first four years, our lives remained pretty much the way they had been before the diagnosis. Kate’s symptoms remained much the same as well. There was simply less to write about than in the next four years. Since the end of 2016, her changes were more dramatic. There was plenty to write about, but I was able to keep up rather well. In 2018, I averaged 1.5 posts a day. Since then, my posts have been less frequent. Last year, my average was .46 posts a day, a 58% drop from 2019 and a 70% drop from 2018. So, what’s going on?

The answer involves two different but interrelated factors. First, Kate’s changes have required more of my attention. That made it more difficult for me to devote time and attention to writing. Second, the stress of caregiving increased proportionately, and I felt I had to put more effort into its reduction.

One of the first things I did was to relax my self-imposed obligation to write a new post by 9:00 at least every other morning. I decided that I had a wealth of descriptive information about us and could afford to post less frequently. That has proven to help with the stress but not eliminate it. Now, it relates more to my failure to write more often. I feel that way because there is so much that I would like to document. The truth is that it is so much that I can’t even remember the things I want to record. Previously, I had jotted down notes during the day to help me, but I have less time for that now.

Apart from my responsibilities for Kate, I have remained active in several other ways. These have been mostly therapeutic for me, but also have an element of commitment that can be stressful at times. One of those is emailing with two longtime friends from college. We are in daily contact, and often I don’t have the time to write. I have allowed myself to relax on my own participation. At the moment, I think I have reached a balance that involves minimal stress and maximum therapeutic value.

Of course, everyone is subject to other stresses that are not directly related to our own choosing. There are times when these present a problem. That is happening right now, and I will deal with that in another post. Right now, I think I will take a break and read the daily news. I’ll review what I have written and post it tomorrow.

Well, tomorrow is here. I’m going to upload this post right now.

Update on The Velveteen Rabbit

It’s been a while since I’ve commented on my use of The Velveteen Rabbit to distract Kate when she is disturbed or bored. Regular readers of this blog will probably recognize that as one of the most reliable tools in my “Caregiver’s Toolbox.” I’m sorry to report that at this stage of her Alzheimer’s, some of my tools aren’t as reliable as they once were. Unfortunately, these include her photo books, our “tours” around the house, and The Velveteen Rabbit.

The good news is that TVR hasn’t lost all its charm. It continues to help me out and has done so twice in the past two weeks. The first occurrence happened when I thought she might be headed toward another experience with sundowning. The preceding occasions began with restlessness accompanied by a desire to go home.

Several times this occurred after she had been in her recliner for a couple of hours. In every instance, it followed a period during which Kate and her caregiver were seated close to each other but not interacting. Although all of our caregivers do a good job with the basic tasks involved in caring for Kate, they are very much like the average person with respect to communicating with her. I am very understanding about this. It really is difficult for them to establish a close personal relationship with her. When asked questions, she doesn’t understand or simply doesn’t answer. Thus, caregivers receive little reinforcement for their minimal efforts.

Even though I am understanding, the contrast between the relationship between Kate and her caregivers is dramatically different than the one Kate and I have. While we also have moments of silence after the caregivers leave each evening, the silence is punctuated by brief conversations and often expressions of our feelings for each other. I don’t expect caregivers to relate in this way, but I would like them to find their own “tools” to handle the situation.

I want to help them and decided to intervene next time I noticed the first signs of sundowning. When that happened, my first step was to kneel down beside her recliner and seek to comfort her. I spoke to her slowly and softly and explained that I wanted to help her. She wanted to get out of the recliner and go home. I told her I would be happy to do that. She began to feel less agitated, but I didn’t solve the problem. I started to pick up one of her photo books. Instead, I thought about The Velveteen Rabbit. I went to the bedroom where I keep it to read to her as a bedtime story. I brought it back to her and read it. As often happens, she was not immediately engaged. The more I read the more she listened. I can’t be sure if TVR made the difference. I do know that she enjoyed the book and didn’t show any further signs of sundowning.

A few days later, we had a similar experience. She and the caregiver were seated in the family room just a few feet from each other. Kate looked bored. She and the caregiver hadn’t been talking at all. I felt like Kate needed a boost. Once again, I picked up TVR and read it to her. She perked up rather quickly and gave her customary audible emotional responses to various passages. It was just the tonic I was looking for. At the end, I noticed that the caregiver was wiping away a few tears. She told me later she wasn’t familiar with the book and thought her daughter might like it.

Will it work the next time she has a problem? I don’t know. I haven’t found anything that always works. One thing is sure. The Velveteen Rabbit still has value, and I don’t intend to give it up anytime soon.

Caregiver Guilt

I’ve often said that as Kate’s caregiver, I have two goals: to keep her happy and to keep her safe. On the whole, I believe I’ve done well on both of these. That doesn’t mean, however, that I haven’t made mistakes, but I do try to learn from them. I had a lesson on that the other day.

Kate was tired that morning. She had been awake early the previous day and didn’t rest much during the afternoon. I woke her about 11:30. I assisted the caregiver getting her ready for the day. She took her meds with some yogurt. Then we let her rest a while. We are getting her out of bed frequently now though not every day.

That day I thought it would be especially nice to have her up and give her breakfast at the table rather than in the bed. A couple in the neighborhood was dropping by to look at our house that we have listed with a realtor before our move to a continuing care retirement community in April. Getting her out of bed is not a pleasant experience for Kate, but recently she has accepted it more easily. It was different that day. She protested vigorously as we got her ready to hoist her in the lift from her bed to the wheelchair.

I started to suggest to the caregiver that we just leave her in bed, but she is usually all right once she gets up. Now I wish I had followed my initial instinct and let her rest. Instead, we got her into the wheelchair while she screamed. Although I thought the worst would be behind us, she had a panic attack and I felt guilty about forcing her to get up.

She didn’t calm down for at least thirty minutes, but then she was fine. I was relieved but still felt guilty. I do think it is important to get her up as much as we can. If we don’t, she may continue to be bedridden. She is quite strong physically, and I would like to see her walk again, but in the future, I am going to be more careful in assessing her willingness or lack of willingness to get up. I don’t want to exacerbate the fear that she already has. It was a bitter lesson for me.

Sundowning

Among the many ways in which Kate and I have been fortunate is avoiding sundowning (sundowners, sundown syndrome), and, at this last stage of her Alzheimer’s, I began to think it was something we might not face. Not everyone does. To the best of my knowledge, my mother never did. I know my dad never talked about it. Since I visited them regularly in the late afternoon, it seems I should have had some personal observation if she had the problem.

I am also mindful that life is always changing. That is especially true with dementia. Nevertheless, I was caught a little off guard this past Friday when Kate, who had been happily resting in her recliner, became more talkative. It was more than just talking. The pace was faster than usual. It seemed like she was a bit hyper. Although it was late in the day, the thought of sundowners didn’t cross my mind. After all, I had observed this kind of behavior before and at earlier times of the day.

It was only at dinner when she spoke very sternly to her caregiver who was feeding her that I thought she might be sundowning. That was repeated numerous times before she finished eating. Her mind appeared to be focused on her own thoughts, not food. When it was time for dessert, she had her usual ice cream in which I mix her evening medicine. The dessert became her focus of attention. After that, she was back to normal, and we had a good evening.

Before the caregiver left, I told her I suspected that had been Kate’s first occurrence of sundowners and asked her opinion. She thought that might be the case. The next two days, we had similar experiences late in the day and during dinner. Each time, it was over when dinner ended.

After the three previous days, I was more prepared for a similar experience the next day. When she has been agitated before, my approach has always been to comfort her by speaking softly and slowly and conveying my love and support for her. That has always seemed to help. Based on what I had read about sundowning, I was doubtful that it was likely to work, but I wanted to try it.

Close to 4:30 when Kate became agitated and talkative. She also felt uncomfortable in her recliner and complained about pain. She wanted to get out of the recliner and go home. I kneeled down beside her and told her I would help her with whatever she needed. That had no immediate effect, but I continued my effort to comfort her. She did cool down somewhat but not completely. She was still disturbed.

The caregiver asked me if I had medications to give her for things like this. I told her the doctor had given me a prescription for Seroquel but I hadn’t used it since two days after Kate returned from the hospital at Thanksgiving. I told her I wasn’t ready to use it again. I didn’t want to resort to medication if I might have success without it.

I felt the need for something to distract her. Of course, I thought of music. I pulled my phone out of my pocket and turned on one of Puccini’s best-known arias, “O Mio Babbino Caro.” It’s a favorite of Kate’s. I’m sure it still is, but it didn’t do the trick this time.

I decided to try the Seroquel. The doctor had prescribed 1/2 of a 25mg tablet.  After giving it to her, I told her how much I loved her. As I did, I thought of another song that she likes and that I have often played for her, “A Bushel and a Peck.” I sang it along with the Doris Day recording. As I did, she smiled and started mouthing some of the words. I played it two or three more times. Then I selected a group of very familiar children’s songs from an album of 100 songs. I started with “The Alphabet Song” and continued with others like “Row, Row, Row Your Boat,” “The Bear Went Over the Mountain,” “Old MacDonald,” and “He’s Got the Whole World in His Hands.” Sundowners was a thing of the past.

We had no trouble at dinner. She happily ate everything. Midway the Seroquel kicked in. She was sleepy. As always we took her directly to bed after dinner. The difference this time was that she fell asleep immediately and slept until 9:30 yesterday morning. Normally, she is awake until 10:00 and sleeps until at least 11:00 the next morning.

Yesterday, for the fifth day in a row, Kate had a similar experience just before coming to the table for dinner. The first signs were a desire to go home and discomfort in her recliner. Again at dinner, she protested the caregiver’s effort to feed her. She ate about half of her meal before I decided to go straight to her ice cream for dessert. That turned the tide, and she was fine the rest of the evening.

Although I am unable to pinpoint the cause of these changes, she is obviously disturbed which makes me believe offering her love and comfort along with pleasant distractions have some therapeutic benefit. How well this strategy will work over the long run remains to be seen, but I am going to continue my preferred approach. I will definitely try comforting, music, and anything else I can think of before trying medication. I don’t mean to suggest that medication can’t play an important role in controlling sundowning. I just think it should be used only after pursuing other solutions. I am also going to be more sensitive to keeping her entertained late in the afternoon before dinner. It might postpone or prevent similar episodes.

Coincidentally, we had a telehealth appointment with Kate’s doctor yesterday afternoon. We talked about this, and she reinforced my suspicion that something other than medication is a reasonable first step in addressing the problem.

Recovering and Declining At The Same Time

Kate’s recovery from her experience with COVID and her hospitalization is progressing. We are working our way into getting her out of bed almost every day now. The process doesn’t go as smoothly as I would like, but she is getting more accepting of our (the caregivers’ and mine) role in helping with her physical and mobility needs. That makes life a little easier for her and for us.

Sometimes it takes as long as an hour or more for her to reclaim her cheerful self after we get her up. The other day someone said, “At least they forget quickly.” That may be so if we are talking about her memory for specific incidents that may have annoyed (angered) her. On the other hand, I believe her senses can hold a feeling for a while.

Now that she is recovering from COVID, I notice differences that reflect her decline from Alzheimer’s. Some of that started as long as 6-12 months before getting the virus. One of those I haven’t mentioned involves her salivation. Four years ago, she stopped swallowing her saliva during most of her waking hours. That required my keeping paper towels or napkins in the car all the time. All our servers were sensitive to this and provided extra napkins for her. It declined a little after a 2-3 years, but now appears to have stopped completely. I don’t have a good explanation for it, but it correlates with other things that have changed.

Some of that involves her food preferences. She has never liked onions, but she eats them now so long as they are cooked. She doesn’t realize she is eating them. Similarly, she never liked coconut. Now one of her favorite soups is one we have gotten at a Thai restaurant. It contains a broth made from coconut milk. During the pandemic, we have used a caterer for meals once a week on Friday night. She sometimes includes a homemade version of a Mounds chocolate bar. Kate loves them.

Other changes make me feel sad. For years she has taken great pleasure in the beauty of trees, plants and flowers. Now she rarely comments on them when she sees them. Even when I pick up a plant and show it to her, it doesn’t invoke the same excitement it used to.

More troubling is the fact that she seems to be losing her interest in her photo books and other family pictures even those of her mother. She still maintains a strong feeling for her mother when she talks about her, but it has been weeks since she has expressed much interest in photos of her. Yesterday was a notable exception. We spent about thirty minutes looking at the “Big Sister” album her brother Ken made for her almost three years ago. She enjoyed every minute until she felt tired. If this decreasing interest in her photo books continues it will remove one of the most valuable “tools” in my “Caregivers Toolbox.” I have used them many times to entertain her or to shift her mood.

On a more positive note, it’s been a long time since she has awakened in the morning and felt afraid. I can’t believe that this is a because she wakes up clear-headed and knows where she is, who she is, etc. She just seems not to be bothered by it the way she used to.

The highlight of our day comes after the caregivers leave around 7:00. I usually get in bed with her and watch some of the evening news. While I take my shower, I turn on music videos for her. After showering, I return to bed with her, and we watch YouTube together and chat. She is perfectly at ease, and I treasure these moments.