Posted on

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.

Posted on

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.

Posted on

Treats for the Caregiver

Those of you who are regular followers of this blog know well the role that eating out has played in our lives. When sheltering began in March, that became a thing of the past. In late May, restaurants reopened with capacity limited to 50% occupancy and often with reduced serving hours. Kate and I began to eat out again, two or three nights a week and lunch on Sunday. That was still a far cry from eating out for lunch and dinner seven days of the week, but it was a significant relief from being completely homebound.

For us, the primary benefit of this habit was keeping us socially active, something that is often a problem for people “Living with Alzheimer’s.” We had developed quite a social network that went beyond the friends and acquaintances we encountered. We also developed friendships with servers, owners, and managers. They have been priceless members of our “team” of supporters.

When Kate and I tested positive for COVID, our routine changed dramatically. Kate, of course, has been in bed most of the time since she returned from the hospital nine weeks ago. Although we have caregivers seven days a week from about noon until 7:00, I’ve only eaten out a few times since then. That was because the caregivers come around lunch and leave around dinner, and those are times when I have been helping with the meals for Kate.

This past Wednesday I did something different. I took a late lunch and went to one of our favorite restaurants. Until March, we had lunch there every Tuesday for more than six years. When I arrived, I asked if the young lady who had served us most often was on duty. She was, but her tables were already full. I told the hostess, who was new and didn’t know me, that would be all right.

After being seated at a table with another server, I discovered that the server I had asked about was taking care of the table next to me. When she saw me, she stopped at my table. We talked briefly, and I explained why we hadn’t been there the past couple of months. To me, that brief exchange was energizing.

Not long after that, the shift manager noticed me and came over to the table to say hello. It wasn’t long before he asked if he could take a seat. That began an almost hour-long conversation. He’s an interesting man who came to the US from Romania. By chance, Kate and I had met his wife and daughter at the restaurant several years ago. His wife is Puerto Rican and a major in the Air Force. I was fascinated with his story of how they met and how they juggle their lives around their different careers as well as the cultural differences between them.

It turned out to be an enriching break from my daily routine as a caregiver. I had recognized before we got the virus that experiences like this were becoming less  important for Kate than for me. The benefit I receive from social contacts is more valuable at this stage of her Alzheimer’s.

I will say, however, that I am not dependent on eating out to satisfy my need for social engagement. I keep up with several college friends and a former professor by phone and email. I have a list of others with whom I often have lengthy phone calls. I have continued my longstanding involvement with our local United Way as well as the foundation for our largest health system, our local symphony orchestra, and Rotary. I am also a member of a men’s coffee club that is a local support group meeting via Zoom twice a month.

I am not as socially involved as I used to be, but interpersonal relationships still play a significant role in keeping me going. Even little things make a difference. Yesterday, I took care of a small responsibility as a member of the only church committee on which I continue to serve. It’s the birthday committee. Each of us calls 8-10 people a month on their birthdays. I’ve done this for 5-6 years and occasionally think about passing it along to someone else, but it’s another pleasant social experience. I think I’ll stick with it.

Posted on

Good Things

Our daughter and son were in town this past weekend to celebrate Kate’s 80th birthday. It’s always nice to have them, but this weekend was very special. Most importantly, Kate enjoyed herself. Saturday, the day of her celebration, she was out of bed all afternoon and through dinner. She joined in with the singing of Happy Birthday and gobbled up her cake and ice cream.

Beyond that Jesse, Kevin, and I had more opportunity to talk among ourselves than we usually do. That gave me a chance to update them on our situation as well as for them to see for themselves how we are doing. I consider them as partners in our lives as seniors. Since we are moving to a continuing care retirement community in April, the two of them looked around the house for things they might like to have. All-in-all it was one of the best family times we’ve ever had, and I think they felt the same way.

Jesse left on Sunday, but Kevin didn’t fly out until Monday afternoon. That gave the two of us a chance to have lunch together before dropping him off at the airport. He has been coming for a long weekend two or three times a year since 2014, and this was the first time we have had a meal together without Kate. It was another good opportunity for us to have a leisurely chat.

Starting with the weekend and extending through Wednesday, Kate had a string of six consecutive good days. That doesn’t mean we were able to get her out of bed each day. It means that she enjoyed herself more than usual. We’re experimenting with a new routine. We don’t try to get her out of bed too soon after she wakes up and has her breakfast/lunch. We have found that she is more likely to express a desire to get up later in the day. We’re trying to take advantage of that inclination, and it seems to be working. If she isn’t interested, we accept that and wait until another day.

Once again, I like to emphasize that even at this late stage of Kate’s Alzheimer’s, she and I are still having good times together.

Posted on

An Anniversary I Won’t Forget

Ten years ago today, Kate was diagnosed with Alzheimer’s. That led to the most significant life change we’ve ever experienced. That night I made the first entry in the journal that became this blog . I have posted it below with a few of my present thoughts about “Living with Alzheimer’s.”

JANUARY 21, 2011 BY RICHARD CREIGHTON

Getting the Diagnosis

Today Kate and I met with Dr. Reasoner to get the results of Kate’s PET scan. She had gone in for the scan a couple of weeks earlier following a routine appointment with Dr. Reasoner. I went with her for that appointment to give my own impression of Kate’s lapses of memory and to hear what Dr. Reasoner had to say.

Dr. Reasoner suggested that she have a PET scan and a behavioral evaluation by a neurological psychologist. Kate had the scan about 2 weeks ago. On Wednesday of this week, January 19, she had an initial visit with the psychologist. Kate is scheduled to have her evaluation on Wednesday, February 16, at 12:30. She has been told this will take as long as 5-6 hours.

Kate and I have not talked much about the PET scan and the potential results. We both knew what was possible, and I think neither of us wanted to drag ourselves down in worry of the worst news. For the past few days I have had some trouble sleeping and have found myself thinking about how she and I would react if the test came back positive. I am sure that every cancer patient would understand this reaction.

As we went to the appointment, I kept telling myself that we might get good news that the test was negative. That was not the case. Dr. Reasoner presented the results matter-of-factly but not coldly. She said the test did show signs of “early onset Alzheimer’s.” She went on to explain what that meant (the tangles in the brain) and how it can be addressed (initially with Aricept and after a few weeks another drug that has, in the past, been used at later stages of the disease).

Dr. Reasoner told her the average life expectancy for someone who is diagnosed early (the starting part was not and, I suspect, cannot be known) is about 12 years but that she could live much longer. She also gave a few examples of people she had known whose quality of life was good even with the memory loss. She is especially interested in Kate’s behavioral evaluation. That evaluation will determine whether the disease has affected other things than simple memory.

Kate handled the news with a good bit of control and later in our meeting, she said that in some ways, she actually felt relieved to know what was causing her memory problems. Her greatest concern is having to depend on family or professional help to take care of her personal care, something that she feels could be required for a long time should she live as long as her parents.

I tried not to give in to the emotion I felt on receiving the news. At one point as we were discussing Kate’s care in the future, I reached for her hand and tried to assure her but choked up. Dr. Reasoner gave me Kleenex to wipe my eyes.

After leaving Dr. Reasoner’s office, we went to Casa Bella, a restaurant that holds a special place in our hearts. We were introduced to it in the early 70s by one of Kate’s best friends. In the last 10-15 years, however, we have eaten there more frequently. We came there after both of our dogs died. She got her veal piccata and amaretto cheesecake that she loves so much.

We talked briefly about having to decide when to tell our children and friends. We both agreed that now is not the time. We know that once other people know they can’t help but treat you differently, and she doesn’t want that. We are just going to take it a day at a time right now and trust that we will know when we should let it be known. This is going to be very hard for both of us as there are people we might look to for support, but there will be a time for that down the road, hopefully a long time down the road.

At that time, I had no idea of what the future held. We were just determined to make the most of whatever time remained to us. I’m grateful that we’ve been able to do just that. We’ve not only enjoyed life but each other as well. Kate can only live moment-to-moment now, and I mean that literally, but I continue to focus on that initial goal. It has served us well in the past, and I am optimistic that it will do so in the future.

I am mindful that we haven’t done it alone. I’m grateful to a host of people who have lightened our load in numerous ways. They include our healthcare professionals, especially her doctors and their associates, but they extend far beyond them. I’m thinking of family, friends and even strangers who have boosted our spirits so many times in so many ways. I am thankful to those of you who are readers of this blog. You, along with my Twitter friends and fellow AlzAuthors, have given me a focus beyond that of being a caregiver. You have played a key role in keeping me going. I consider all of you as members of my “Caregiver Support Team,” and I thank you.

I also recognize there are many others “Living with Alzheimer’s” who haven’t been as fortunate as we have. Some of you reading this post may be among them. My heart goes out to you. My wish is that you will find your own ways to experience moments of peace and joy in the midst of the inevitable challenges that face all of us who travel this road.

Posted on

Update on Kate’s Recovery from COVID

It’s been nine weeks since Kate and I experienced the first signs of COVID and almost eight weeks since she returned home from the hospital. Kate’s recovery has been gradual, but steady. The biggest breakthrough was getting her out of bed. In my last post, I reported that we had been able to get her up three days in a row. We added another three days to make it a total of six straight days.

Things are going well. Kate’s transfer from her bed to the wheelchair to the toilet and back to the wheelchair is easier than before. With one exception, she has enjoyed spending the day in her recliner in the family room.

We haven’t, however, been able to fully conquer her fear as we make the transfers. She is also frightened when we push her in the wheelchair. We have to move very slowly and watch her hands and arms closely as we go through doorways or past anything that she can grab. She holds tightly to anything within her reach. She also attempts to stop the chair’s movement with her feet. I’ve found it easier if we slowly pull her backwards.

Despite our best efforts, the only rewarding aspect for Kate is relaxing in her recliner. It does avoid changing her in bed, but the transfers are almost as unpleasant for her. That has caused me to think seriously about the cost/benefit ratio of forcing her to get out of bed. It is better for her caregivers and me, but is it a sufficient benefit to her?

On her 80th birthday, I really wanted her up. She wasn’t as cheerful as on other mornings and not eager to get out of bed. With my permission, the physical therapist and the caregiver got her up anyway. As it turned out, she didn’t appear to enjoy the afternoon as much as she has on previous days.

The next day the physical therapist came again. Kate was tired. We put our heads together and decided to be satisfied with the success we had achieved in the preceding days. We let her rest.

Saturday and Sunday we got her up again. It went pretty well Saturday. Sunday was another thing. She really didn’t want to get up, but we went ahead. She was angry with both of us, not just the caregiver. I left for lunch shortly after we had put her in the recliner. She wasn’t speaking to either of us. It is not unusual for her to need as much as an hour or more to recover from changing or just getting her out of bed, but her bitterness seemed more severe this time. Fortunately, she had recovered by the time I returned home, and we had our usual good evening together.

I felt bad about pushing her too hard and would like to avoid creating the same result again. I discussed this with the caregiver who was here yesterday. We decided to give her a break and get her up only if she seemed willing. As she has done on a few other occasions, she expressed an interest at one point but changed her mind when it came down to doing it. We accepted that. She had a good day and was much easier to change in bed. I think it was good for her to have a break. She’s making progress. We’ll get her up another day.

Posted on

More Victories

Numerous times during Kate’s recovery I have said that she is making progress “though gradually” or “slower than I would like.” That doesn’t mean that we don’t have moments or days with giant steps forward. I reported on one of those almost two weeks ago when I described the first time we were able to get her out of bed, to the bathroom, and to the table for dinner. That was a major victory, and it occurred as a result of her own desire to get up.

I think all of us (home health, the daily caregivers, and I) felt that was a confirmation that we were doing the right thing by not having forced her. We had been acting on the knowledge that her hospitalization had traumatized her so much that we didn’t want to add further trauma to her life. I believe we made the right decision.

A number of times since then, she has said she wanted to get up, but she got cold feet when we tried to help her. Three times she wanted to get out of bed after the caregivers had gone. I was relieved that she backed out because I wasn’t sure I would be able to get her back in bed by myself.

At the same time, she was beginning to adapt to our changing her. That was good because that is the most difficult issue we have faced, but it was still an unpleasant experience. Even the caregivers recognized it would be almost impossible for them to do it without my help. We began to believe her life and ours would be improved if we could just get her out of bed.

Late last week, I decided we should be more assertive with her. I may have been motivated by a couple of experiences with Kate’s physical therapist. I had talked with her about the importance of getting her up. She said she could get Kate up if I would give her permission to physically pull her up against her will. I told her I thought we should try. With the two of us pulling her, we helped her sit up on the side of the bed. She protested verbally and physically, but the process occurred quickly. She settled down almost as fast. We repeated this when she was here last week.

The caregiver who was on duty the first time we got her out of bed was on duty Saturday. Soon after she arrived, we talked about another attempt. This time I told her I wanted us to be more assertive, that I felt getting her out of bed wouldn’t be any more traumatic than changing her in bed.

Kate’s best time of the day is usually later in the day. She was asleep until noon, so we decided to give her time to have lunch and then see if we could get her into her wheelchair. For several days, I had talked with Kate about getting her up. She felt that would be all right.  Of course, that was easy to say because there was no immediate threat. We took that same approach Saturday, and she expressed interest. I can’t say it was easy or that she didn’t protest, but we were able to pull her to a sitting position on the side of the bed and then to the wheelchair. From there we went to the bathroom and helped her on to the toilet. She was frightened and fought when we lifted her from the wheelchair to the toilet and back, but overall it went well. She spent the rest of the day in her recliner in the family room. When it was time for dinner, we took her to the table where we ate dinner together for the first time in weeks. It was a very good day.

Yesterday, the same caregiver was here. Kate was awake at 11:00 and had her morning meds and some yogurt before the caregiver arrived. She was also in a very good mood that lasted the entire day. We got her up, to the bathroom, to her recliner, and later to the table for dinner. It was a day in which she was filled with delusions. She was very talkative but also very happy. The caregiver and I were also happy.

The icing on the cake occurred today when a different caregiver was here. I told her about the weekend. We decided to try again and had another success. Lunch was especially fun. It was the first time she had come to the table for lunch since before she contracted the virus. That’s six or seven weeks. Our Monday/Wednesday caregiver is from France and enjoys making French Toast and French Omelets. Kate had a little of both today. She fed herself and even told the caregiver the meal was “wonderful.” Later in the meal, I asked if she liked it. She gave me a very loud and enthusiastic “Yes!”

I will say that it was a bit more difficult getting her out of bed today. I don’t believe we gave her enough time to thoroughly wake up, but we succeeded anyway.

Looking back, I feel that we did the right thing earlier by not forcing her out of bed. She was too fragile from her hospital experience. Gradually she was improving. It was clear there were times she wanted to get up but was too frightened to do so. I feel she reached the point at which she needed to be pushed to save her from an experience that was more traumatizing. I am glad we decided to change our approach. She has enjoyed being up. As I close this post, I can hear her happily talking with her caregiver.

She has been up three days in a row. That makes me believe it should get easier in the future. I can’t tell you how good it is to see this leap forward.

Posted on

Feeling Grateful in the New Year

Over the past year, I’ve experienced a number of different emotions, most of the them related directly or indirectly to the progression of Kate’s Alzheimer’s, but some, like COVID, have occurred for other reasons. The feeling I have right now is a sense of gratitude. Kate and I have been on the receiving end of the goodness of people throughout the past year. That has been especially so during our personal experience with the virus and its aftereffects.

It marked the first time I felt a critical and immediate need for help, and everyone responded in ways that exceeded my expectations. Much of that came from family and friends who have given me encouragement via phone calls, cards, and email. I’ve been particularly impressed with our healthcare professionals. They have played an enormous role since the middle of November when we tested positive.

I’ve always felt good about the geriatric practice with which Kate’s physician is associated. I kept her doctor, nurse, and social worker busy responding to my questions. They went out of their way to address the various issues we have faced, and I continue to rely heavily on them.

Although unable to be with Kate in the hospital, I had several phone conversations with her nurses and doctors each day. They were responsive to all my inquiries and gave me a sense that they were giving Kate the very best care. They were also sensitive to my own needs.

It was only after Kate’s return home that I had direct contact with anyone. They include the Home Health personnel (nurses, physical therapists, and a social worker). I’ve had confidence in each one. They are all experienced in their respective areas and possess the sensitivity one expects from someone who has chosen a career caring for others.

My closest contact, however, has been with the caregivers who have been here every day since Kate’s return home. Watching and working with them closely has confirmed what I thought when Kate entered the hospital; I was facing a caregiving task that I couldn’t handle by myself.

I like every person our two agencies have provided. We’ve had seven or eight new caregivers. Only one person was with us before. Their training and experience have enabled them to address all of Kate’s needs. I’ve learned a lot from them. When you add their compassionate care to their clinical strengths, they are an excellent team.

I should make a special point concerning how hard they work, not just for us but for the others they serve when they are not here. I believe all but one of them works at least one other job in addition to their work with the agency that provides them to us. It is not unusual for the Monday and Wednesday caregiver to come to us after working all night and/or leaving us for another all-nighter.

I was especially impressed with someone who was here last week. She has undergone open heart surgery, has MS, and has had a brain tumor. She has four different jobs. In addition, she has two children, one who is in college. Despite the difficulties she has faced, she is very upbeat and grateful. I’m sure she is an inspiration to everyone who knows her.