Posted on

Welcome to Living With Alzheimer’s

January 25, 2024

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 more than three years. We both tested positive for COVID two weeks before Thanksgiving in 2020, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but it took several months to recover from the trauma of being taken to the hospital by ambulance and the hospital experience itself.

In early February 2022, she had a stroke. That has also had an impact on her. She was an early stage of aphasia, and the stroke made that worse. She doesn’t talk much, and when she does, it is almost impossible to understand what she is saying. Every day, however, she says a few words or sentences that we can understand clearly. The stroke also affected her right leg, She is unable to straighten it.

Although our lives have changed significantly, we continue to enjoy life and each other. We can’t be as active as had been, but we still get out as much as we are able. We live in a continuing care retirement care community.  Every day we go out for ice cream at 3:30 and go from there to dinner at 4:30. That gives us enough time to have a leisurely dinner and get her to bed around 6:30.

I don’t know what lies ahead, but we began our journey with the intent to enjoy life and each other for as long as we could. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thank you for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

Posted on

An Unusually Happy Moment

In my first post of the year, I said we were off to a good start. That was because we had just gotten a replacement for our previous Monday through Friday caregiver who left us for health issues of her own. Three months have passed since our new caregiver has been with us. She has made our lives much better; however, Kate has also gotten along very well during the first three months of the year. My previous posts have been filled with the “Happy Moments” we have shared this year. During the past week, we have had more of those.

One of those occurred last Wednesday. As I was returning home from lunch, I caught the tail end of an unusually Happy Moment. Kate and the caregiver were at the café in our retirement community where we go for ice cream each afternoon. When I approached them, I saw Kate and the caregiver with another resident sitting right in front of and facing Kate who was smiling. They were having a conversation.

What made this an especially rare moment is that the resident drops by almost every afternoon when we are having ice cream. Each time, she is looking for a smile or verbal response from Kate. That rarely happens. This time she hit the jackpot.

Of course, the resident could understand almost nothing that Kate was saying. Like me, she was simply enjoying the fact that Kate was so cheerful and talkative.

Later, I was surprised to learn that Kate had spoken several words or short sentences that were understandable. Here is one that our caregiver told me.

Resident: “I think Richard likes you.”

Kate: “Yes. He takes care of me.”

Since then, Kate has had several other days when she was especially cheerful and talkative.

I can’t explain why she is having so many more of these experiences, but they make everyone happy as well. I do know that when she is like this, she receives a lot of reinforcement from the people around her. That is certainly true for her caregivers and me, and we celebrate every Happy Moment.

Posted on

Let the Good Times Roll

Two months ago, I wrote a post recognizing the 13th anniversary of Kate’s Alzheimer’s diagnosis. Since that time I have added five new posts. Each one has celebrated “Happy Moments” with Kate. This is another one.

Kate has continued to make significant progress. Not concerning her Alzheimer’s, but she has more “Happy Moments” than when we moved to our retirement community three years ago. I haven’t kept score, but since January I don’t think a day has passed when she hasn’t been very cheerful at least part of each day. Let me remind you that this doesn’t mean she has Happy Moments all day long. Her mornings are still the quietest part of her day. Of course, she sleeps a good bit of the time before the caregiver arrives at 11:00; however, she has been waking earlier and is often smiling.

Her Monday through Friday caregiver and I have also been struck by the fact that she is saying more words that we can clearly understand. I keep a record of them as they occur. Here are a few from last week.

After I returned from lunch

Richard: It’s about time for us to go for ice cream.

Kate: That’s good.

After dinner that night

Richard: We’re going to have a nice night together.

Kate: I love it.

Just before leaving the dining room

Server: Goodbye. See you tomorrow.

Kate: I’m glad you’re here.

In apartment

Richard: I like all the pictures I see of you.

Kate: I thank you.

Getting Kate ready for bed

Kate: Coughing

Caregiver: Are you OK?

Kate: I strangled.

You may think of these as insignificant, but for someone who rarely says a clear word, it is very special.

I attribute much of her recent progress to her recovery from her stroke two years ago. Since then, we haven’t had any bumps in the road. In addition, she continues to receive a good bit of attention from the residents and staff at our retirement community. I, too, give her a lot of attention. I am only away from her about three hours a day. That comes when I am out for lunch, meeting friends for coffee, and/or running errands. In addition, I smother her with love from first thing in the morning until we turn the lights out each night.

Almost two weeks have passed since I began this post. Since then several everyday non-caregiving responsibilities have gotten in my way. During that time, Kate has experienced numerous Happy Moments. It should go without saying that has meant many Happy Moments for me. It has been an amazing time.

I know these moments won’t last forever; however, right now, I’m savoring every one of them.

Posted on

Happy Days

It’s been five weeks since the 13th anniversary of Kate’s diagnosis, and I haven’t had anything but good news to report. I’m happy to say that she continues to surprise me with her “Happy Moments.” They have been more frequent in the past two weeks. That is especially true when she and I are alone or with the caregiver, but she has also shared her cheerfulness with residents and staff.

I’ve been taking more videos because she has been talking more. Despite her aphasia, she appears to be communicating appropriately. I also continue to jot down things she says that are clearly understood. Here are a few of those from the past couple of weeks.

While having ice cream on Saturday afternoon, I said, “I didn’t have lunch today.” She said, “Why?” At Dinner that night, the caregiver said, “I had a cough.” Kate said, “What did you say?”

At dinner last Thursday, I said, “You’re entertaining us tonight.” She said, “That’s great!” As we neared the end of dinner, I said to the caregiver, “She really cleaned her plate.” Kate immediately said, “Yes!” A little later, she and the caregiver were waiting for me at the elevator. Kate said to her, “What are we going to do now?” Later in our apartment, I said, “You make me happy.” She said, “Yes, I know.”

Earlier this month, the Seekers were on YouTube singing “I’ll Never Find Another You.” I turned to Kate and said, “I’ll never find another Kate.” She said, “That’s wonderful.” These words may seem trivial to some people, but they don’t occur often; therefore, they are very special to me.

Kate has been saying things like this more often than in the past couple of years. Perhaps, the brain itself is repairing the damage from her stroke on February 7, 2022. Whatever the reason, I enjoy every word she speaks even when I can’t understand them. I just love hearing her voice.

Addendum

2024-03-04

The Happy Moments Continue

For the record, I would like to report that Kate’s “Happy Moments” have continued throughout the week since this post was written. As always, I want to emphasize that this doesn’t mean that they occur all day every day. She is usually in what I call her “neutral mood” in the morning. She tends to perk up in the afternoon, but this past week, she was unusually cheerful several mornings .

I am not naïve. I know that these good times will pass, but I have no idea when. It could be tomorrow or much later. In the meantime, I celebrate every “Happy Moment” she has.

Posted on

A Happy Valentine’s Day

It’s been years since Kate has been able to anticipate future events or holidays like Thanksgiving, Christmas, New Year’s, birthdays, or anniversaries. So I would never expect her to show any recognition of a holiday like Valentine’s Day, but she does have frequent “Happy Moments.” We shared two of those on Valentine’s Day.

The first occurred when I came home after lunch. As I do every time I’ve been out, I opened the door and said, “Hello, I’m home. I’m looking for Kate. Where is Kate?” As usual, she was in her wheelchair with her back to the front door. As I walked toward her, I could see her profile. She began to smile. I continued to walk closer and repeated “Where is Kate?” and finally said, “There she is! I’m so glad to see you.” I got down on my knees so that I could look directly at her and said, “I missed you while I was gone.” She beamed and started to laugh.

She was in a cheerful mood, and the two of us talked for almost an hour. I couldn’t understand most of what she said, but it is always a thrill when we have conversations like that.

This doesn’t happen every time I come home, but it does occur occasionally. It seemed to be more meaningful on Valentine’s Day and certainly more touching than any card or other gift she might have given me.

That was topped off by a romantic evening. After the caregiver was gone, and I had my shower, I got in bed with her. She was very relaxed but still talkative. We spent the rest of the evening listening to music and talking about our lives together. I reminded her about our first date and those that followed. That led to talking about our engagement, marriage, having children, and our travels. Again, I could not understand most of her words, but she appeared to be giving appropriate responses to everything I said.

It was a wonderful way for us to celebrate Valentine’s Day. At the time of her diagnosis thirteen years ago, I could not have imagined our having such moments this late in her Alzheimer’s. We are very fortunate, and I am grateful.

Posted on

More Good Things

Wednesday morning, the caregiver who is with us Monday, Wednesday, Thursday, and Friday brought me more good news. She is now free on Tuesday and asked the agency to assign her to us for that day. She still needs to leave a couple of hours early on Wednesdays, but this brings closure to the most challenging period of stress I have experienced during the entire six and a half years we have had care at home for Kate. I am very happy. Not only do I have one person to handle Kate’s care for our weekdays, but she is the caregiver I have liked most since we first started home care in 2017.

That’s not all. Kate has had an unusually good week, and Friday was her best day since before she was hospitalized with Covid in November 2020. She was awake early and talkative off and on throughout the day. She was also responsive to residents who stopped to speak to her at the café downstairs while she was having her ice cream that afternoon.

For me, the highlights of the day were our times together that morning and that evening. I spent a large portion of the morning with her before the caregiver arrived at 11:00. She was cheerful and talkative. We had a good time. Our evening was a repeat of the evening I reported on in my previous post so I won’t elaborate. Moments like these are precious. I know we are very fortunate to have such experiences this late in her Alzheimer’s and wish that were true for every family “Living with Alzheimer’s.”

Posted on

Good Things

Two thousand twenty-four is off to a good start. Our caregiver issue is almost solved. The first month after losing our regular Monday-Friday caregiver, we had 29 different caregivers. After ten weeks, the total is 40. That means we’ve had only 11 different caregivers in the past 6 weeks. Not only that, but the caregiver who had originally said she could work every Monday, Wednesday, and Friday had a change in her schedule that allows her to work every Thursday as well. Now, we only have to find a person to take care of Tuesday. Until then, we have different people filling in. Fortunately, most of them have been here in the past. This improvement reduces most of my stress.

More importantly, Kate has shown more improvement in recent weeks. As I have said in previous posts, this does not mean an improvement in her Alzheimer’s. It does, however, indicate that she is more at ease which is expressed in her smiles and her speech. It is still difficult to understand her, but her speech indicates that she is happy. From my perspective, that is what is most important.

I am especially pleased that our relationship remains strong. That isn’t reflected in every moment of every day. She is still very quiet on most mornings. On some mornings, she doesn’t express any recognition or interest in me. Other mornings, she does.

She expresses her feelings for me most often when I return home after being gone for a while. At other times, it is in the evening after she is in bed, and the caregiver has left. Last night was one of those.

She had already had a talkative afternoon. When we have occasions like that I generally expect that it won’t continue as we move to other activities. That was no problem last night, and we had a conversation that lasted at least an hour, perhaps a little longer. Sometimes she seems a little hyper when she is talking. This time was different. She spoke slowly and responded to what I had said. Sometimes she asked me a question, and I gave an answer that I hoped would be appropriate for the question she had asked.

During our conversation, she smiled a lot and laughed a good bit as well. It is hard for me to put our feelings into words. The best I can do is to say that we were both perfectly at ease and engaged in a conversation that meant a lot to each of us. I might say it was a beautiful bond of love that transcended her inability to say much that I could understand. I could almost imagine that it was one of those early days when we were dating. It was like each of us was enthralled by what the other was saying. She was still in late-stage Alzheimer’s that requires total care for all of her activities of daily living. For those moments, however, neither of us was mindful of that. We were, and still are, a couple in love, and Alzheimer’s has not been able to take that away from us.

Moments like this will not last forever. For now, we will enjoy every Happy Moment that comes our way.

Posted on

Remembering the Diagnosis: January 21, 2011

Today is the 13th anniversary of Kate’s diagnosis with Alzheimer’s. That was a life-changing event. At the time we recognized that, but now we know and understand it far better. We don’t celebrate the day itself. We celebrate the fact that she is still with me and that we have lived joyfully. I say that even though her Alzheimer’s, her 8-day stay in the hospital for Covid in November 2020, and her stroke almost two years ago have had a significant impact on our daily lives. Today, our world is much smaller than it was before.

Until the pandemic, we were very socially active. When Covid entered the scene, we were suddenly left to entertain and feed ourselves at home. In November 2020, we both had Covid. Kate spent eight days in the hospital. She has required total care since she returned home. That means we dress her, bathe her, get her in and out of bed with a lift, and use a wheelchair when we leave the apartment. Our social life is now limited primarily to our getting ice cream at a café downstairs each afternoon followed by dinner in the dining room at night.

So, how can I say that we live joyfully? I have two answers to that question. First, Kate  has not experienced most of the problems that other people face. Second, we have found ways to enjoy life and each other despite the changes demanded by Alzheimer’s. We have binged on things we enjoyed before the diagnosis. That included attending musical and theatrical events as much as possible and eating out for lunch and dinner every day for 8-9 years before the pandemic. As a result, we have never been socially isolated.

Because we get out as much as we can, we have a large network of supporters. That is especially true among the residents and staff of the retirement community in which we live, but it also comes through the readers of this blog and our contact through social media.

There is no way to predict how long the good times will last. As I have reported in other posts, we have experienced some new challenges recently. When we began this journey thirteen years ago, we decided to enjoy life and each other for as long as we could. That has served us well, and we will continue to do that and be grateful for the joyful moments we share daily.

Posted on

Two More Issues

As I indicated in my previous post, “Not everything goes as well as I would like”. On Tuesday, I was reminded of that again. We got off to a good start when she awoke early and seemed to be in a good mood. Over the course of the morning, however, she experienced what I described as a pain in her right leg around the knee that was affected by her stroke almost two years ago. She has not been able to straighten it since then.

I am used to the fact that she periodically lets out a scream or yell which is an unmistakable sign of pain. Fortunately, the pain appears to go away almost immediately, and she is perfectly fine. That morning was different. The pain seemed to go away after she screamed; however, her screams were repeated more than five times over a period of a couple of hours. She was fine after that.

When I returned home after lunch, she was happy to see me. She got along well until it was about time for us to go out for our daily ice cream and then dinner. She had been happy and more talkative than usual, but she began to talk more rapidly. Her smiles turned to expressions of agitation that conveyed she was bothered by something.

I put on some music that is usually calming for her. It didn’t work quickly, and I suggested to the caregiver that we give her some ice cream. We did, and it worked. A few moments later, we left for our normal trip downstairs for ice cream. I decided if any signs of agitation reappeared, we would come back to the apartment. Fortunately, she was fine after that. One of our residents stopped by to speak to her. She is always looking for a smile or verbal response from Kate. Most of the time, she is disappointed, but not that time. The result was that she stayed and talked with us 20-30 minutes before it was time for us to leave for dinner.

I was relieved that we didn’t have any more surprises, but I do wonder if these recent experiences are just isolated issues or whether we might see more things like this in the days ahead. Like so many other things, time will tell.

Posted on

Not Everything Goes As Well As I would Like

My previous posts about our caregiver situation are signs that not everything goes the way I would like it. The fact that we have had 39 different caregivers since our previous Monday through Friday caregiver had to resign for health reasons is an indicator of a serious problem. Fortunately, that continues to get better. We now have someone who is with us each weekday except Tuesday. We are still looking for someone for that day.

Kate continues to have “Happy Moments” despite her having to adapt to the different ways that each new person handles the various aspects of caregiving. One of those occurred recently when I arrived home after lunch. She was glad to see me. I spent quite a while with her talking about her family. Music was playing in the background, and I started singing or humming to her. She was enjoying herself so much that I took a dozen or more videos of her. Each one is a treasure that I have enjoyed sharing with family and friends.

Later in the day and the next morning, I was reminded that more unpleasant things can also happen. Shortly after we ordered our dinner that evening, she became very agitated. At first, I thought she was responding to a pain in her right knee or leg. That is the one that was affected by the stroke she had almost two years ago. She hasn’t been able to straighten that leg since then. The caregivers and I are most sensitive to that. It makes it hard to dress and undress her as well as getting her into and out of her bed and into a chair. The problem for Kate is that she experiences moments of pain. We always know about it because she lets out a loud scream or yell. It is usually over as quickly as it comes, but this time she remained agitated, so we asked the server to prepare our meals for carryout and went back to our apartment. It wasn’t long before she was calm again, but this was unusual. It was the first time I felt the need to leave any public place because of a problem like this.

The next morning she had a panic attack. This is not the first in recent months and followed the pattern of at least two others. She seemed to be frightened. That fright was expressed in her facial expressions as well as a vocal response I couldn’t understand. She was hot, and her skin was clammy. I did what I had done before. I turned on some music that I know she likes. In this case, it was “Edelweiss. I got in bed beside her and sang along with the music. I played it several times in succession and then drifted to “True Love.” In a short time, she was calm again.

Considering everything, we have lived joyfully since her diagnosis in 2011, but we do have our “ups and downs”.

Posted on

Making a Good Recovery

Most of my posts reflect a positive attitude about “Living with Alzheimer’s.” My self-perception is that I am an even-tempered person who is upbeat and calm even during life’s ups and downs; however, I have recently focused on the unusually high degree of stress I’ve experienced since the loss of Kate’s primary caregiver on November 9. Four weeks later, we had 29 different caregivers. It’s now been eight weeks, and the total number of different caregivers is 36. That is an average of almost five new caregivers a week. In addition, there have only been 11 out of 49 days when we had just one caregiver for eight hours. One weekend, we had 4 caregivers on Saturday and another 3 on Sunday. As a result, I have not been as upbeat as I usually am.

The good news is that I am making a good recovery. Part of the reason is that the number of new caregivers in a given week has declined significantly. Even more important is what I reported in my last post. One of the new caregivers has chosen to help me by volunteering to come three days a week (Monday, Wednesday, and Friday) during January and February. As I indicated in that post, that removed a major source of frustration, but there is more.

Her first day was January 1. Several weeks had passed since she had been with us, and I had forgotten how much I liked her. Yesterday was her second day, and I feel even better. She seems to be better than other caregivers we have had over the past three years. She has the basic CNA (certified nursing assistant) skills and a caring and compassionate personality that I value. She is also pleasant to have around.

To top it off, Tuesday we had another new caregiver (number 36 since November 9) who was excellent, and she will be back tomorrow. I don’t know about her long-term schedule, but it would be wonderful if she could come on Tuesday and Thursday when our Monday, Wednesday, Friday person is not available. It may not be quite as good as having one person five days a week, but it comes very close. Everything may turn out to be even better than it was before the loss of our previous person. I am hopeful.