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

Music Is Still One of the Best Tools in My “Caregiver’s Toolbox”

Periodically, I’ve talked about my “Caregiver’s Toolbox” and the fact that caring for Kate requires a lot of different tools to meet the variety of problems we encounter. I’ve also noted that some of these tools no longer work as well as they did in the past. In particular, photo albums don’t have the same appeal they did for years. One of those I can still count on much of the time is music. The pleasure of music continues to lift Kate’s spirits and provide many hours of enjoyment for both of us.

Since her diagnosis 10½ years ago, I’ve called on music to address specific problems. The first time occurred in the early days when I rushed her as we were getting ready to attend a concert by our local symphony orchestra. She had a panic attack and hadn’t fully recovered when we left the house. As soon as we were in the car, I turned on the second movement of the Brahms Violin Concerto. It’s a very peaceful adagio that runs just over 10 minutes. Kate was calm before it ended. That experience led me to create a short playlist of the second movements of the Brahms, Tchaikovsky, and Mendelssohn violin concertos for use on other occasions.

Several years ago, Kate was uneasy after awaking from a short nap on the sofa in our family room. I was seated across from her and went over to see what I could do to help. After an unsuccessful attempt to calm her, I started to sing a children’s song, the name of which I no longer remember. That seemed to bring a brief smile to her face, but my memory of songs escaped me. I took my phone out of my pocket and searched for albums of children’s songs on Google. I found one with 100 songs and downloaded them to my phone. For the next 30-40 minutes, we sang songs like “Polly Wolly Doodle,” “Old McDonald Had a Farm,” “The Bear Went Over the Mountain,” “If You’re Happy and You Know It,” and many others. The crisis was over in no time.

As I was about to go to sleep earlier this week, Kate had a delusion like many others she has had in the past. She was worried about someone she believed was coming to see us. She couldn’t stop talking about it. I tried to reassure her by telling her I would help her and that I had everything worked out, but that didn’t do the trick. I leaned upon music to help me. Lying beside her with my head on her shoulder, I began to softly sing “Edelweiss.” Then I hummed it again. I followed that by humming “Nearer My God to Thee.” My next step was to start a search for both of these songs to play on my audio system. Before I could do that, she had stopped talking. She was calm and drifted off to sleep. Music had come to the rescue once more.

There are many other examples of the ways in which music has enriched our lives. I don’t know how long this will last, but I’m optimistic that it will be important to us the rest of our lives.

Special Moments With Family

Although Kate is generally happy, her mood varies more at this stage of her Alzheimer’s than it has in the past. Sometimes, like Monday, she’s in an especially good mood. I treasure those moments as a gift from her.

She was awake before 7:00 that day and remained awake until going to bed that night. I took a short break for breakfast, but I didn’t take my morning walk, check email, or read the paper. I was engrossed by her happiness and wanted to enjoy every minute of it.

After her morning meds and something to eat, I got in bed beside her and turned on a mix of YouTube videos of highlights from concerts by Andre Rieu, his orchestra, singers, and dancers. Watching videos like this has been the centerpiece of our evening activity following dinner for at least the past five years.

During the past year or so, she’s been much less attentive to the videos themselves but continued to enjoy the music. I attribute this to the difficulty she has in knowing where to focus her eyes. She has the same problem when I show her pictures in an album or on the TV. Several times lately, I’ve been encouraged when I played YouTube videos of puppies doing cute things and discovered that they caught her attention at least for a moment. On Monday, as we watched together, she was engaged with both the music and the videos themselves. More than that, she was enthusiastic and expressed her pleasure repeatedly for almost three hours until the caregiver arrived, and I went to my Rotary meeting.

I was especially pleased that our son, Kevin, was with us and got to partake of most of the morning. He came for a visit last Thursday. The visit itself was special in that Kate’s brother, Ken, and his wife, Virginia, as well as our daughter, Jesse, were also with us. I was somewhat like a parent during this time, hoping that all of them would get a good understanding of how Kate is doing and why I say that we continue to enjoy life and each other. I am satisfied they did.

Monday morning stands out, but there were other moments over the weekend that were also special. Among them was a moment when I read Kate a resolution that our church had adopted in recognition of her service as the church librarian for 19 years. It’s been years since she has been able to remember this. When I remind her of her service, she usually recalls it with pride. It pleased her to hear me read this gift of appreciation from the church.

On Sunday, Jesse had a her own special moment when she got in bed with Kate and took a video of a brief conversation between the two of them. It was as special for her as Monday’s experience was for me.

Sunday afternoon, Kate and I shared another special moment when I handed her a stuffed bear that Ken’s wife had made for her. She didn’t say a word; they weren’t needed. She held the bear tightly in her arms and against her face for a full 15-20 minutes. It was a touching moment that I was able to capture on video.

The past few days with family went very well. Every one of us clearly recognized Kate’s decline, but we were all able to accept her as she is and convey our love for her. I think she would say that was the most special gift we could offer.

What’s Going On?

Friends sometimes wonder about Kate and me when my posts are less frequent than usual. Most of the time it’s not because something is seriously wrong, but I often find myself occupied with other aspects of life that need my attention. Less frequent posts also reflect the changes that have accompanied Kate’s decline and the pandemic. Our world is smaller now than it was before, and we have settled into a routine lifestyle that leaves me with fewer new things to report. Here’s a quick update.

After being on a plateau most of the year with respect to her Alzheimer’s, Kate is exhibiting signs of another downward shift. I’ve mentioned some, perhaps most, of them in previous posts, but, in this one, I want to stress the point that she is falling deeper into a stage most people think of when they hear someone has Alzheimer’s or another form of dementia.

One symptom that carries a lot of weight for me is her increasing failure to recognize me, that is, in a cognitive or rational sense. It has been several years since she began to forget my name or that I am her husband. For a long time, that has come and gone from day to day or moment to moment. It is now a much more common occurrence.

The same is true for her own name or anything about herself and her family. In fact, the saddist moment I’ve had with her recently was when she was in a fog the other morning and asked, “Do I have a name?” I said, “Yes, you have a beautiful name, Kate, and your mother and daddy gave it to you.

On this occasion, I would say she was puzzled, not frightened, over her mind’s being blank. This now seems to be the best way to describe her morning “fog” whereas I used to say she was frightened, disturbed, or bothered.  

More often than not, she is still comfortable with me when these moments occur. She trusts me, likes me, and certainly feels dependent on me. When she wants me, she calls me by name or may ask the caregiver “Where’s my husband?” Sometimes it’s just a reflexive response. The other night, for example, we had an extended conversation in bed. She was very talkative, but delusional. Several times she referred to me by name.

On the other hand, there are more times when she doesn’t recognize me and asks, “Who are you?” She is often surprised when I tell her I am her husband. Sometimes she accepts the news without any emotion or receives it positively. As with other questions she asks, she sometimes says, “Who are you?” several times in not quite rapid-fire sequences.

I take these changes along with others like being less cheerful and her increasing aphasia to be critical markers of a new stage of her decline. More often than not, she doesn’t speak to people who speak to her. It saddens me to see this and recognize there is no way I can stop the progression of this disease that robs her of more and more aspects of her personality. Yet, we still enjoy life and each other, and I continue to see signs of the same Kate I met more than sixty years ago. It’s been more than 15 or 16 years since we noticed the first signs of her dementia. I feel sure she is getting along better at this stage than many, if not most, people “Living with Alzheimer’s,” and I am grateful.

A Rough Start, But a Nice Day

Yesterday, as I was preparing for my morning walk (inside our apartment), I noticed that Kate was awake. She looked disturbed. It was easy to tell that it was one of those moments when she didn’t know where she was, who she was, who I was, etc. Her mind was an apparent blank. Although she didn’t recognize me, she didn’t appear to be afraid of me, only frightened by not knowing anything. This is something that used to occur occasionally before the pandemic. It seems to be making a unfortunate comeback.

I asked if she could tell me what was wrong. She said, “I don’t know.” I told her she had been sick and that sometimes caused memory problems. She said, “What’s my name?” I told her and then gave her my name and relationship along my usual recitation of our lives from college to having children. Sometimes she comes out of this fog rather quickly, but she didn’t this time. I turned on some relaxing music. Then I got her morning meds and gave it to her with some yogurt. I also made her a smoothie with cranberry juice, blueberries, and prunes, my latest effort to prevent constipation. I followed that with mandarin oranges. Her anxiety lessened, but she was still not cheerful. She looked a little tired, so I let her rest while I took my walk.

When I finished, she was very cheerful and talking to “someone.” That was the beginning of a day of talking and delusions that was only interrupted by an appointment with a podiatrist just before at 1:45. Knowing that the caregiver would have less time than usual to get her ready, I decided to fix her lunch. That was a good thing because Adrienne didn’t have to rush her while getting her dressed.

She remained in a good mood, but Adrienne and I were both a bit apprehensive about how she would respond to having her toenails cut. It had been too long, and Kate had protested vehemently the last time we tried. For that reason, I gave her half a tablet of Seroquel 25 mg. Normally, it takes effect with 15-20 minutes, but we couldn’t tell that it worked at all.

When we told Kate we were going out, she didn’t want to go. With a little coaxing, she agreed; however, her protest about leaving and the fact that the sedative didn’t appear to have worked added to my anxiety. Fortunately, the podiatrist’s “office” is only a short walk down the hallway. This is another benefit of moving from our home. We won’t trim her toenails again.

The podiatrist works primarily with seniors and visits a lot of local senior facilities in our area. Thus, she is experienced with the challenges she can face. Kate was quite comfortable with her. Her only protests came when the doctor lifted her feet to put them on a foot stool. She also screamed a few times during the trimming process, but she didn’t put up a fight.

After this successful experience, it seemed natural to stop for ice cream at the café we passed on our way to see the doctor. While Kate was enjoying the treat, two different people we have known from our church stopped at our table. We talked for about 30 minutes. When they left, we asked Kate if she were ready to go “home.” She said she wasn’t. We stayed another 30 minutes. During that time we asked several times if she were ready. Finally, we decided it was time and left. She didn’t protest at all. I’m glad she finds the café a relaxing place to spend some time. Adrienne and I feel the same way. It’s just nice to get out of the apartment.

We had more than an hour before dinner, so we spent that time on the balcony of our apartment. It was especially nice out as the temperature was much lower than usual.

Kate’s talkativeness had subsided until we got home. She began to talk again and didn’t stop until Adrienne left about 7:45. She even talked between bites at dinner. Once in bed, however, she relaxed and slept for about an hour. We watched a Peter, Paul and Mary concert on YouTube and then retired for the night. She was tired after a full day and was asleep in no time.

One of Those Days

Kate and I have many good days, but not always. Sunday was one of those exceptions. It began around 9:00 when I got a call from the agency that provides two of our three caregivers. The one who was to come was sick, and they were looking for a replacement. They had identified someone who might be able to take her place, but she would be on overtime, and they wanted to know if that would be all right. I gave my approval.

A little later, I received another call telling me that person couldn’t come. After we hung up, I called them back to say that if they couldn’t get someone for the whole day, I would be happy to have someone for a short time to help me get her up for the day and return later in the day to help me get her to bed.

They found someone who could come under those conditions and that she would not be on overtime. They let me know that she was inexperienced and would need my help if I were agreeable. Since I’ve been an active participant in Kate’s care, I agreed.

When she arrived, I learned that she had been in training as a medical technician. She had taken a temporary position with the in-home care agency to make a little money before continuing her previous educational plans. It didn’t take me long to find out that she was not skilled in the kind of care Kate requires. She wasn’t good at changing or dressing someone in bed, and she had never used a lift for a patient.

This was not an ideal situation, but I began optimistically with the thought that I might have learned enough to make things go smoothly. I think of myself as a pretty good assistant to our regular caregivers, I quickly learned how unskilled I am in direct patient care and training of other caregivers. Trained and experienced caregivers clearly handle situations like this without any great difficulty. I won’t go through any of the details, but it took us at least twice as long to get Kate up and in her wheelchair. Fortunately, using the lift went more smoothly.

In addition, Kate was more confused and not as cheerful as she is other times. I’m not sure that I have mentioned that for the past 4-6 weeks she has had more experiences when she doesn’t recognize me. That normally disappears after I give her my name and tell her some of our history (where we met, falling in love, having children, that we have been happily married more than 58 years, and that I love her dearly ). After that, she usually responds to me as though she knows me. It usually lasts for the rest of the day or at least a few hours. On Sunday, she asked, “Who are you?” off and on until we retired for the night.

I’ve frequently mentioned that I like routine. This was a day that was far from that and, therefore, somewhat uncomfortable for me. That was particularly true in connection with the difficulties with a substitute caregiver. I had become comfortable and dependent on our regulars. A new and unskilled caregiver was an abrupt change.

Despite that, there are good things to report. For the first time, I took Kate for ice cream without a caregiver. We went down the main hallway that is officially named “Main Street.” Our building is at one end, and the café with ice cream is almost at the other end. It was a nice stroll and a treat to enjoy time to ourselves.

After the caregiver left that night, Kate and I had another good evening. At first, she couldn’t remember who I am. I gave her my routine explanation a couple of times and ended by telling her how much I love her. That seemed to stick. We watched YouTube videos with music by The Kingston Trio and The Brothers Four. The day ended well as it always has.

Caregiving: An Exercise in Problem Solving

As noted in my previous post, life is going well in our new home. That doesn’t mean we don’t have any problems. Caring for someone with Alzheimer’s requires continual problem solving, but we do have successes. Among them is being able to get Kate out of bed every day, something we hadn’t been able to do for months after her return from the hospital on Thanksgiving. We also take her out of the apartment though hallways that connect us to all the other buildings in our complex. That’s been helpful in terms of introducing Kate to other residents, and stopping along the way for ice cream hasn’t been bad either.

We have encountered one troublesome problem during these outings. Kate doesn’t like her feet to be on the footrests of her wheelchair. She is quite strong, and the caregivers and I found that she stiffens her legs when we attempt to place each foot on its rest. We almost always succeed, but she protests loudly, something that stands out in our quiet hallways. Several times we’ve had to return to the apartment before going very far. When we succeed, she often takes one foot (her left) off the rest and drags it along the floor. That creates a safety hazard for Kate and also makes it decidedly more difficult to push the wheelchair.

I explored ways to address the problem for several weeks and didn’t find just the right thing. My initial thinking focused on the fact that it was her left leg that was the bigger problem and that it gradually worked its way to the right until the foot fell to the floor between the two footrests.

I talked with someone at a local medical supply store who wasn’t encouraging. He told me there are boards that are designed to be installed across both footrests, but he indicated a number of problems with them. Then I began to consider why Kate had so much trouble getting her feet on the rests to start with.

For months I noticed that she keeps her legs crossed while she is in bed. Since she is in bed about 18 hours a day, I wondered if she had experienced
muscle deterioration. A number of times I thought about having a physical therapist come out for an evaluation. I mentioned this to Kate’s doctor during her appointment two weeks ago. He took action for me and requested both a physical and an occupational therapist.

Before the PT’s first visit with Kate, I decided to check on Amazon for footrests that might address our problem. I found what looked like a potential solution the day the PT came. It’s a solid footrest that sits on top of the existing footrests and has a raised padded portion against which her calves can rest. I showed it to the PT who thought it was worth a try. I ordered it immediately, and it came in the next day. It works beautifully. We’ve used it four days in a row without a problem. When we put Kate in the wheelchair, her feet rest naturally on the new footrest. More importantly, she must feel comfortable because she keeps them there. That has made life much easier for Kate, her caregivers, and for me.

But, wait, there’s more. It turns out the therapist himself is the best I can imagine. He seems quite young but combines several important qualities, his knowledge, bedside manner with Kate, and a desire to explain what he does and why. In addition, he is able to explain in non-technical terms what the caregivers and I should do to build on what he does.

As it turns out, we found a way to keep Kate’s feet on her footrest as well as a physical therapist who is helping us acquire a reasonable set of expectations for someone in her physical condition. She is quite strong, but she is not going to walk again, and we’re not likely to need much PT. Although I had held this assumption previously, it was good to hear it from an expert. He also offers good tips for everyday care. Now, we’re ready to face whatever new issues arise, and I know they will.

Benefits of Living in a Life Plan Community

Kate and I continue to get along well in our new home in a local retirement community. My motivation for moving was to provide backup support for Kate should something unforeseen happen to me. Having made the down payment two years ago this past May, we were considered to be part of the community with access to virtually all the benefits available to those who were already living here. It wasn’t until a short time before our move that I felt the need to take advantage of anything. That’s when we became eligible for the COVID vaccination. I jumped on that but wasn’t able to get Kate out at the time.

When we moved in, they were no longer giving vaccinations, but I spoke with one of the staff who coordinates resident services about arranging for someone to come to our apartment. She said she would work on that, and shortly thereafter, a team from the county hospital came to us for Kate’s first and second doses.

The longer we are here the more benefits I discover and take advantage of. Many of them are little things that make life a little easier, but some are more significant. This past week involved the latter. The first was a switch in Kate’s primary care physician.

For about fifteen years, she has been patient at the geriatric practice where my mother and father as well as her mother were patients. We have always been pleased with all of the physicians who practiced there, but getting Kate to the doctor now requires our arranging for a wheelchair van or ambulance for her transportation. A year ago, however, the doctor who started the practice and was on the faculty of the medical school opened his own private practice at our retirement community. Kate’s doctor who has worked with him for years and is also with the medical school suggested that it might be best for her to become a patient at his practice.

I thought about that for several months. Two weeks ago, I made the arrangements for the transfer. She had her first appointment Tuesday. He and his nurse spent an hour with us at our apartment where we spent most of our time talking about Kate’s medical history, especially her Alzheimer’s and medications and made the appointment for a second visit, also at our apartment, a month from now. What a wonderful benefit. She has a physician I have known and respected for more than twenty years, and his office is in the building next door. We are connected by a hallway so that we don’t even have to go outside when we visit him, and he doesn’t mind coming to our apartment when that is more convenient.

Kate was the recipient of another health-related benefit this week. Last weekend. a resident in one of the cottages tested positive for COVID. The management responded with a number of changes that involve our wearing masks, cancelling social activities and asking us to minimize our social contact for the next couple of weeks. They also required everyone to be tested Tuesday and Thursday.

I was tested the first day along with 251 others. No one tested positive. I was concerned about Kate’s taking the test that requires a swab for the nose. Although it is not at all painful, I thought she might be frightened by it. I spoke with the person who had arranged her vaccination. She immediately said she would be happy to come to our apartment for the test. We set that up for late afternoon the day before yesterday.

When she and her assistant arrived, I introduced them to Kate and explained what we were going to do. I did so in the calmest non-threatening tone of voice possible. She was quite accepting until I tried to use the swab. The moment the swab touched her nose she pulled away and was adamant about not wanting us to do it. We tried several times over the next five minutes and finally agreed that we should approach it a different way.

I told her I had a prescription of Seroquel that I had used only a few times before and that it makes her sleepy. I added that I felt most comfortable giving it to her before she went to bed. We scheduled it for the following day. I had only used the Seroquel three other times. It knocks her out, so I don’t like to use it; however, it works well for something like this. I held her hands and let the nurse do the swabbing. Kate awoke immediately, but the nurse was able to finish quickly. We had the results (negative) before she left the apartment.

Living in a life plan community (often called a continuing care retirement community) may not be for everyone, but it has certainly made life easier for us. I’m glad we’re here.

A Great Day for the Caregiver

Last week, I spoke to a group at our church about living with Alzheimer’s. During the Q&A, someone mentioned the stress experienced by caregivers and asked how I was dealing with that. As I said to him, “That’s a good question and one that I’ve tried to address since Kate’s diagnosis.” My thoughts about care for the caregiver is rooted in watching my father as he cared for my mother who had dementia. Except for the things I did to support him, the only help he sought out was a daycare center for my mother 4 hours every Wednesday so that he could go to Kiwanis and the grocery store. He was always in good spirits, but the stress took its toll on him. I vowed not to let that happen to me. I can’t say that I have found a way to eliminate stress, but I have been able to minimize it.

Since our move in April, life has become much easier for me. Supervising only three caregivers is much better than the 6-9 we had before the move. That has meant more routine in our lives. As expected, the convenience of meals on the premises has been a major benefit. Little things like being able to stroll down the hallway to a café where Kate can get an ice cream or a milk shake adds pleasant moments of relaxation. On top of that, I am enjoying the social interaction with other residents and staff that occurs throughout the day.

I also get away from the grounds several times a week. I attend Rotary every Monday and have lunch at two of my favorite restaurants on Wednesday and Sunday. Of course, there are also trips to the grocery store and pharmacy.

This past Wednesday was an especially nice day. I had lunch at Carla’s where I had an arugula and goat cheese salad with cherry tomatoes and pecans accompanied by a side of smoked brisket (the best I have had outside of Texas). The meals in our retirement community are quite good, but they don’t compare to the ones I get at Carla’s or Andriana’s.

Apart from the meal, I had conversations with two of the staff I have known for quite a while. One is a server who is moving to Nashville. Her boyfriend just graduated and is moving there to look for a job. She is going with him to further her education to become a physical therapist. She was excited about the move, and I was excited for her. It reminded me of the early days of our own marriage.

The conversation was with the shift manager. He is from Romania and has been in the US about five years. He is married to a Puerto Rican who is in the Air Force. Earlier this year, he became a US citizen, and was very excited about that. Now, he is excited by the news that his wife’s next assignment is in Naples, Italy. That will put them within an hour by plane to his family’s home. That will make it much easier and less expensive for his parents to visit him and his wife and daughter. When his wife finishes this assignment, she will have only three years until she can retire. Upon retirement, they plan to return to the US. I found both of these conversations to be uplifting and was happy for them.

Wednesday is also “Spa Day” for Kate. The caregiver bathes her, shampoos her hair, applies lotion to her body, and does her nails. When I got back to the apartment, I was pleased to see Kate with eyes closed relaxing in her recliner while the caregiver filed her nails. Until two years ago, I had been taking her to have her nails done once or twice a month. As her Alzheimer’s progressed, she became somewhat frightened, and I stopped. This particular caregiver has been doing her nails since she came to us in December or January. It does my heart good to see Kate enjoy herself so much.

To top it off, we made our trip down the hall for ice cream. I didn’t need anything more to keep my spirits up.

“Happy Moments” Make for “Happy Days”

Almost all of our “Happy Moments” are unplanned. That’s part of what makes them special. One of those occurred the other morning when I was giving Kate her meds in a cup of strawberry and banana yogurt, a favorite of hers. After her last bite, she began to whistle. (She’s hasn’t been a whistler until the past 6-12 months when she began whistling to express her happiness.)

One of my many quirks is that I often hum, whistle, or sing softly without being quite aware of doing so. In this case, I began to whistle “Let Me Call You Sweetheart.” She expressed her pleasure with a smile. It doesn’t take much encouragement for me to break into song, and I sang the song to her. Spurred on by her pleasure, I whistled “Old Man River” and followed by singing it.

She was enjoying the music so much that I put on an album of children’s songs I downloaded 3-4 years ago when she was disturbed about something. Since that time, I have periodically used it for entertainment, not to solve a problem. We spent the next 20-30 minutes listening and sometimes singing songs like the “Alphabet Song,” “If You’re Happy,” and “The Bear Went Over the Mountain.”

When we finished, Kate was ready to rest, but it was another unanticipated “Happy Moment” that didn’t require any planning or great musical talent. Just two people connecting through music that added an extra measure of happiness to our day.

Some might say, “What’s so special about that?” John Zeisel answers that in his book, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s. He points out that too often we treat people living with dementia like “patients” rather than as “people.” We need to accept and appreciate their capabilities that last long after the diagnosis. It’s possible to maintain positive relationships with our loved ones with dementia through many things like photos and music that have been very important to Kate and me. This particular “Happy Moment” illustrates how we are able to continue to enjoy life and each other. May it always be so.

How is Kate?

Every day, people ask, “How is Kate?” That’s a question I’ve been asked since I became open about her diagnosis 4-5 years ago. Because I’m around people much more since our move, I hear it more often these days. For years, I said, “Remarkably well.” For the past couple of years, I’ve been more likely to say things like, “She’s having a good day.” “She’s happy.” “Our relationship is as strong as ever.” Sometimes I say, “She had a rough day yesterday.” Each of the things is true, but it never tells the full story.

Something similar is true about this blog. Over time, my posts convey a pretty good picture of how she is doing, but reading only a few posts can be misleading. For that reason, I would like to give you a better sense of how she is at this last stage of her Alzheimer’s.

I have focused heavily on Kate’s recovery from COVID since Thanksgiving. She had only one problem, but that was a significant one. She was frightened by everything that involved moving her. She has made slow, but steady progress. The fact that we are able to get her up every day and sometimes take her out of the apartment are the best indications of that.

That doesn’t come without any problems. She still protests a little when we change her. She is also bothered by minor bumps when she is in her wheelchair. For example, she feels even slight changes in elevation as we roll her from the floor to the carpet and back again and responds with an audible protest. Getting her into and out of bed with the lift is going much better as is getting into and out of a chair. Her responses also vary from day to day.

Our visits to the café where we get her a milk shake or ice cream have been especially good times. It’s not the ice cream that is the major benefit. She, the caregiver and I enjoy spending time in the seating area that looks onto a courtyard. It is relaxing for each of us. I also like the fact that it gives Kate the opportunity to see other residents. Not every interaction goes the way I would like, but I think it is good for her.

A couple of days ago, for the first time, she became belligerent when we were about to leave the café. She yelled and screamed when we tried to get her feet on the footrests of her wheelchair. I’m not sure why, but she doesn’t like using them. It is one of the things that frighten or bother her. Despite this, she is getting better. Two days this week, she didn’t protest at all and kept her feet on the footrests the entire time.

While she’s recovering from the trauma of COVID, she seems to be on a plateau with respect to her Alzheimer’s. She doesn’t seem very different than she was a year ago. In three ways, I believe she has declined. She seems to have fewer cheerful moments than in the past, although she periodically has very cheerful and talkative periods that can last several hours.

When these moments occur, they are usually rooted in a delusion in which she refers to people and situations that are not real. Her caregivers and I converse with her as though she is making perfectly good sense. We know that she is happy, and we are glad to see it. This experience is especially common around the dinner hour. She almost always enjoys her food and expresses it joyfully. In between these cheerful moments, she has longer periods in which she is more passive or withdrawn than she used to be. Thankfully, she is happy most of the time. Even when she is sleeping or resting, I often notice that she has a smile on her face.

Following a longtime pattern, she is generally “slow” in the morning and sometimes confused but improves throughout the day. She is at her best after 2:00 or 3:00 in the afternoon. This usually lasts until she goes to sleep.

Another change involves Kate’s interest in her photo books and her family. Her mother has always held a special place in her heart. Now, Kate expresses little interest in her mother’s pictures or even hearing about her. Similarly, she displays less interest in her children and grandchildren. The exception is when she talks with them by phone. Sometimes, she responds as warmly as ever.

She is also less comfortable with people who drop by to see us or those she meets when we take her out. She often fails to say anything at all. Sometimes she surprises me. She did that earlier this week when the caregiver and I took her to get a milkshake. A church friend stopped at our table and spoke with us a few minutes. Kate didn’t say a word even when the person spoke directly to her and asked a question. When our friend said goodbye, Kate responded to her as warmly as if the two of them had been talking for ten minutes.

There is one other change that is particularly significant to me. She has more moments when I am not familiar to her. It’s not that she doesn’t remember my name or that I am her husband. I feel sure that happens more than I know. The difference now is there are times when she responds to me like I am a stranger. Sometimes she doesn’t seem bothered by that and asks in a friendly voice, “Who are you?” That happened last night as we were enjoying a series of YouTube videos featuring Peter, Paul, and Mary. Several times in succession, she asked who I was. Each time I answered she repeated her question. Other times, she seems disturbed and doesn’t say anything or respond to my questions.

In either case, I tell her my name and that we have been together since college. I mention our falling in love, getting married, having children, and that we’ve been happily married fifty-eight years. This usually sparks a sense of recognition. Even when it doesn’t, she seems more comfortable.

We had an experience like that this morning. After telling her who I am, she was still uncomfortable talking with me. I reached for The Velveteen Rabbit on the end table and read it to her. She kept her eyes closed the entire time and didn’t respond in any way. At the end, I said, “I like that story. Thank you for letting me read it. I hope you liked it too.” She looked as though she might be asleep and didn’t say anything, but she nodded her head. She was going back to sleep, something not unexpected as she had been awake 2-3 hours earlier than usual. Did she “know” me then? I don’t know, but she was relaxed.

Except for this change in recognizing me, our relationship remains strong. She is glad to see me when I return after leaving her with the caregiver. Sometimes she is very expressive and says, “I’m so glad you’re here.” She still calls my name when she needs something or during times she when the caregiver is doing something she doesn’t like. Most of the time, she also responds rather quickly when I try to calm her as the caregiver changes her. In addition, she frequently grabs my hand in moments when she feels threatened (bothered?) by the caregiver’s efforts to change her or move her in any way.

Several other good things remain the same. Music is still an important part of our lives. At times when Kate is quiet, her caregivers and I often notice that she is moving her head or feet in rhythm with the music. I don’t read The Velveteen Rabbit to her as often as I used to, but I am pleased that she continues to enjoy it.

Most important of all, to me at least and I think to Kate, is that the best time of our day is after the caregivers leave each night. We both relax and enjoy being together. That is something I hope we can hold onto for some time to come.