Ups and Downs Over the Past 10 Days

In most of my posts, I report on our positive experiences. That’s because we don’t really have many negative ones to report; however, we had two unpleasant surprises recently. A week ago Thursday she woke up early and was fine. I spent some time with her listening to music and chatting with her. We were quiet for a few minutes, and then she seemed to be worried. That increased to agitation. It reminded me of delusions she periodically experienced several years ago. During those times, she was bothered or concerned but never to the degree I noticed that morning.

She felt hot and her skin was clammy, so I took her temperature. It was normal. Then I took her blood pressure. It was 194/130. Her pulse was 96. These are all far above her normal readings. I called her doctor whose office is next door to our building. He and his nurse came over right away. They checked her blood pressure, and it had gone down. She seemed more relaxed. They were with us about 15 minutes, and her blood pressure continued to go down, and she seemed fine. We concluded she must have had a delusion that frightened her.

Two days later, she had a similar experience. Her blood pressure was 193/126. About 20 minutes later, it dropped to 123/76. We haven’t had any other such experiences since then, and I hope this doesn’t become a new part of our lives.

Those two experiences were followed by at least three very good days. On each occasion, she woke up early and was awake for a good bit of the morning before the caregiver arrived. During the afternoons, she was more cheerful than normal and one of those days, she was very talkative. She spoke to people we saw while having our afternoon ice cream as well as at dinner that evening.

When she has happy days like these, I am happy too, so it was a great week for both of us. Her behavior continues a trend that has been taking place for 8-10 months. Over that time, she has felt more at ease. That matters a lot. When she is at ease, it is easier for her to smile and talk.

Yesterday was not a good day for her. She seemed to be fine in the morning, but her mood had changed by the time I returned from lunch. She smiled briefly when I returned, but she didn’t appear to be happy after that. It was only at dinner that she began to change. When she spoke to two guests, the caregiver and I were amazed because she hadn’t been very responsive all day.

As often happens, we had a good evening together. I have no idea what made such a difference during the afternoon.

I drafted most of this post over the weekend, but I am glad to report that this morning she awoke in a cheerful mood with lots of smiles. She hasn’t talked, but she has smiled and laughed at things I have said to her. We’re off to a good start. Right now, I am sitting up beside her in bed as I close this post. She is smiling and talking. I can’t understand what she is saying, but I enjoy her Happy Moments. It looks like we could be in for another good day.

Reflections on Love and Caring for Kate

I’ve been Kate’s caregiver for more than twelve years, and the more experience I get, the more strongly I believe that love has played a critical role in our relationship. Anyone can give attention to someone with dementia, but it is easier when you love someone. For that reason, I suspect that a spouse has a potential advantage over other caregivers.

Love can be a great motivator. As Bryan Adams’ song, “When You Love Someone” says,

When you love someone,

You’ll do anything.

You’ll do all the crazy things

That you can’t explain.

You’ll give up everything,

And you’ll never let them down.

You’ll be more compassionate

And more understanding.

And you’ll always be there

For the one you love.

The recipients of care also benefit from being loved. They are happier.

Ours has always been a loving relationship, but love has played a more significant part in our marriage since her diagnosis. In the beginning, it didn’t require much effort on my part. We had agreed in the first few weeks to devote ourselves to enjoying life and each other as long as possible. That was easy because we found pleasure in the same things – movies, theater, music, dining out, and travel. My responsibility was simply to arrange an active lifestyle that included all of these.

After her diagnosis, I felt an intense desire to be with her as much as possible. I immediately started having lunch with her every day. I was also transitioning into retirement, so I started taking the afternoon off. That enabled us to spend much more time together than we had had previously.

All of the activities and time together further strengthened our relationship. In some ways, it was like a long honeymoon. We were simply binging on things that had meant so much to us in the past, and we were doing it together.

Of course, Alzheimer’s has required significant changes in our lives. At first, Kate had several activities that she could do on her own. One of those was her computer. She worked many hours a day on that task. She worked mostly on a family photo album. She was never able to finish it because she lost her ability to use the computer. When she was no longer able to do that, I gave her an iPad which was her only self-initiated activity until the pandemic hit in 2020. Since then, I have had to assume greater responsibility for keeping her occupied.

Along the way, it became harder for her to remember my name or that I am her husband. Fortunately, she continued to recognize me as someone she knows, likes, and trusts. During this phase, I began to place greater emphasis on expressing my love for her. I did, and still do, that in several ways throughout the day.

I greet her enthusiastically when she wakes up in the morning. I tell her how glad I am to see her and remind her that we met in college and have been married for 60 very happy years. I talk about our children and grandchildren. I also mention how thankful I am that we both went to TCU. If we hadn’t, we would not have met.

I have a similar routine when I return home after lunch. As I open the door, I say something like, “Hello, I’m home. I’m looking for Kate. I wonder where she could be?” I continue talking as I walk to her, and I often see a smile on her face. Then I kneel beside her and tell her how much I like that smile and that I missed her.

Recently, I did something a little different. I whistled “I Love You a Bushel and a Peck” As I walked toward her, I could see the smile emerging on her face. That’s the way she expresses her love for me.

As I have noted in a previous post, our evenings are the most romantic part of our day. We are both more relaxed than at any other time. We appreciate our time alone.

Love can’t stop the progression of Kate’s Alzheimer’s, but I believe being loved, and receiving attention from our primary caregiver, as well as the staff and residents of our retirement community have played an important role in the happiness she enjoys while “Living with Alzheimer’s.” That makes me happy too.

Do We Have Any Moments When We’re Not Happy?

I talk a lot about the Happy Moments that Kate and I have but try to convey that they don’t occur all the time. It would be fair for you to ask what our lives are like the rest of the time. Do we have Bad Moments? Here’s my answer.

Our Bad Moments are rare. They include getting Kate’s Alzheimer’s diagnosis, her hospitalization for Covid, the first few weeks after her return from the hospital, her stroke, and the first few weeks after that. Apart from those, I wouldn’t call any of our time together Bad Moments.

Sad moments are another thing. I can’t tell if Kate has any of them. I know that I do. Sometimes they occur when we are getting her ready in the morning and into bed at night. Although she has adapted very well, they always involve things that she doesn’t like. Nobody would like to live their lives so dependent on others. This will continue for the rest of her life, and I feel sad for her.

At this late stage of Kate’s Alzheimer’s, I also experience sad moments when I think about losing her. Although we can’t do most of the things we used to do, she is happy a good bit of the time. That keeps me happy, and I’m not ready to let her go. I want to keep her as long as I possibly can.

Most of our days are filled with Neutral, Pleasant, and Happy Moments. Here is a short rundown of a typical day for us.

I get up between 4:30 and 5:00 five days a week when I go downstairs to our wellness center where I work out for fifty minutes on the seated elliptical. I go early because I can be pretty sure that she is still asleep and won’t need anything.

When I return, I change clothes and have breakfast before checking email, preparing Kate’s morning medicine and juice, and doing a variety of other daily chores. Sometimes, like today, I work on a new blog post. Periodically, I check Twitter and upload a new message related to Kate. The days vary, but I have other household responsibilities like washing and putting away dishes or laundry, watering plants, or paying bills. Other times, I order supplies like gloves, wipes, and other items used by Kate’s caregivers.

Kate usually sleeps until 10:30 or 11:00. During the past year, she has begun to wake earlier. This is usually a neutral time. She almost never speaks or smiles and normally goes back to sleep after her morning meds.

Sometimes she remains asleep until the caregiver arrives at 11:00. Other times, she vacillates between being asleep and awake. That happened this morning. I was in bed beside her when she opened her eyes, smiled, and spoke a few words. I couldn’t understand them, but just hearing her makes me happy. Shortly after that, she was resting again. This time can last as long as several hours, sometimes until I return from lunch.

Once in a while, Kate is cheerful when she wakes up. When that happens, I take advantage of the opportunity to spend time with her. After getting her meds and something to drink, I often get in bed beside her. These are usually Pleasant Moments. It is rare for us to have any conversation. Kate’s not ready for that, but I enjoy being with her. It’s a pleasant time for us. While she goes in and out of sleep, I work on my laptop. On some mornings, she is cheerful and talkative. Those are Happy Moments.

I leave for lunch while the caregiver feeds Kate. I don’t know for sure what happens while I am gone. I do know that the caregiver who is with her Monday through Friday sits beside her the entire time I’m away. I also know that Kate feels comfortable with her and occasionally talks with her.

When I return, we usually have a period of Neutral Moments. She is almost always resting
in her recliner with her eyes closed. I go directly to her and tell her how glad I am to see her. In the past, she hasn’t shown any emotion at all; however, more recently she has responded with a smile when she hears my voice. As I reported in an earlier post, recently she was quite excited when I returned home. That was obviously a Happy Moment for both of us.

Between then and the time we leave for ice cream, I spend most of my time with her but take breaks to check email, call friends on the phone, and do any other chores that need my attention. This time is usually filled with Pleasant Moments. I enjoy these moments. They are just not as upbeat as our Happy Moments.

Our ice cream and dinner times are always Pleasant Moments. Kate likes her ice cream and usually smiles off and on while we are out. Some of the residents and staff stop by our table to talk briefly. They always greet her warmly. Although she rarely speaks to them, she seems to pay attention to what is said and often smiles at specific things that they say. Sometimes she is especially cheerful and talkative. Those are definitely Happy Moments.

Our evenings are almost always filled with Happy Moments, but they are somewhat different from those occurring earlier in the day. All of our obligations of the day are over, and both of us are relaxed. We simply focus on being together. The combination of Alzheimer’s and aphasia limits Kate’s speech. Despite that, she communicates a lot with her facial expressions and her hands. It is a romantic time for both of us. I often tell her about our children and grandchildren as well as many experiences we have had during our marriage while she smiles and holds my hand and runs her hand gently across mine.

Before going to sleep, I say, “Thank you for a very nice day. Did you know that every day I spend with you is a nice day?” She sometimes smiles. Then I say, “I love you, Kate. I always have. I always will. Forever, and ever, and ever.” She almost never says, “I love you”, but once last week, she puckered her lips and blew me a kiss. That was another Happy Moment. She doesn’t need words to express her affection for me.