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“All’s Well That Ends Well”

Day before yesterday, we had our first potential crisis in our new home. It actually began late last week when Kate had periodic episodes when she coughed and/or yelled “Oh, Oh, Oh!!!” Sometimes her yell was quite loud. She also looked troubled. When I asked what was wrong. She said, “I don’t know.” I asked if she were in pain, but she was unable to answer the question though it certainly sounded like she was. The surprising thing was that the problem didn’t last long and didn’t occur again for hours or even a day later.

During the afternoon three days ago, she had several of these episodes in rather close proximity. Just before dinner, the caregiver noticed that she put her hand under her left breast. We both thought that might indicate the source of the pain. She got along all right until about 10:15 that night when she woke me with her “Oh, Oh, Oh” and a cough. I gave her some Tylenol, and she was soon back to sleep.

The rest of the night went well, but around 7:00 or 7:30 yesterday morning, she had the same problem. At 8:30, I called her doctor’s office and left a message describing the symptoms. About 9:45, I received a call from her doctor’s nurse who relayed a message from the doctor that we should consider calling EMS and going to the hospital to be checked for a heart problem.

Before calling EMS, I called one of the staff who handles residents issues as they move in. Since our building is new and requires key entry, I wanted to know what I should tell EMS. Then I placed the call. Less than ten minutes later, the first crew (with the fire department) arrived. One of them got basic information from me while another checked Kate’s vitals. In another ten minutes a crew from EMS arrived.

Not too much later, the leader of the EMS crew asked to speak to me. He said all her vitals indicated that she was not having a heart attack. All her signs were normal. He wanted to know if I still wanted her to go to the hospital. I told them about the trauma of her hospital experience with COVID and said I didn’t want to send her to the hospital without more evidence of a serious condition. I called her doctor but knew they wouldn’t be able to get back to me to help with the decision. I left the message that I was keeping her at home.

When they called back a short time later, the doctor agreed with my decision and suggested this might have been a problem with acid reflux, something that has been an issue for several years until the pandemic. Previously, we had eaten out twice a day, not counting trips to Panera where she got a blueberry muffin. During the pandemic, our diet was more normal, and I had discontinued her reflux medication and had informed her doctor. Since our move two weeks ago, she has eaten heavier meals than she had previously. Sometimes the servings are quite large, and she eats everything. Two times last week, I felt she might be eating too much and suggested the caregiver not give her any more of the rice or pasta and focus on the meat and vegetables. I think the new eating habits might have brought on acid reflux.

Of course, we don’t really know for sure that reflux is the problem, but the more I think about it, the more I think that’s it. In particular, the coughing sounds more like reflux than an ordinary cough. The episodes themselves are periodic, and she appears perfectly fine most of the time. She is back on her medication, and it should take affect in a few days.

Apart from the morning, the day went well. We had a visitor from the agency that provides most of our caregivers during the afternoon, and Kate was in rare form. She even called me back this morning to say how glad she was to meet Kate and how struck she was by the way she handled herself.

So, “All’s well that ends well.” I am relieved.

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Update on Our Move

My previous post was almost three weeks ago. That’s the longest time between posts since I started this journal more than ten years ago. There is a good reason for this pause. I have found myself incredibly busy with preparations for the move as well getting settled in our new home. Although I had been getting rid of things for six months or more, the job wasn’t finished until ten days after we moved. I can’t say that I can relax now, but the major work is finally behind me.

I’m happy to report that my immediate reaction to being here is quite positive. I feel at home. It appears that Kate does as well. During the past two years, quite a few people have asked how I thought she would adapt. I think that’s because people are aware that change can be difficult for those with dementia. One reason I hadn’t been concerned was the trajectory of Kate’s decline at the time I decided to move. I felt by this time she would handle it well.

Two weeks before leaving, I started telling her that we were going to move. She wasn’t bothered in the least, and even expressed some interest though she never remembered my telling her. I feel sure she knew something was going on during the packing and loading of our household goods. The morning after packing I heard her talking to “someone” (an hallucination) in our bedroom. I didn’t catch all that she said, but I did here her say, “We’re going to be moving.” And that day we did. After arriving in our new apartment, I told her we were in our new home. She liked it. She seems no different than she was in our house.

For me there are lots of differences, but they are good ones. I like the size of our apartment. Even though it is smaller than what we are used to, it is not cramped. We have everything we need. Having the availability of meals is also a plus. I feel sure that I won’t be eating out as often now that it is only a short walk down the hall to pick up dinner. The wellness center’s location next door via an enclosed hallway is a big plus. That will enable me to return to my gym activities that I stopped over a year ago.

I’m especially pleased with the contact I’ve had with staff and residents. It’s a very resident-oriented place. Each of the staff members I’ve met has been dedicated to making our home as comfortable and pleasant as it can be. In addition, I know quite a few of the residents, and the ones I hadn’t known are friendly. So far, I haven’t been able to engage in any of the activities. I expect that will change as life settles down.

None of this means that I don’t face some challenges. What would life be without those? People who know me well, know that I (try to) follow a routine from the time I get up until I go to bed. Moving has upset that routine in many ways. I haven’t taken my 60-minute-plus walks since two days before the move. I haven’t learned where things are and haven’t found a number of things that I know we brought with us. This can be bothersome, but it’s not a big issue. I know it’s just a matter of time before I develop a new routine. At this stage of our lives and Kate’s Alzheimer’s, it seems like the perfect place for us.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.