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I participate in three different support groups for caregivers. In virtually every one of the meetings, people talk about the various things they find stressful.

Most of the conversations in the groups with which I am involved deal with the frustrations caused by their loved one’s behavior. One of the most common is repeating the same questions over and over. Another is the loved ones’ denial of the diagnosis and the refusal to cooperate when the time comes to issues like giving up the keys to the car, needing a walker, or willingness to accept a caregiver. The frequency with which the others are mentioned varies a good bit with the individual situations and the stage of the dementia.

At present, I believe my greatest source of stress relates to Kate’s in-home care. I emphasize “present time” because I depend more heavily on paid help now that Kate requires total care. When caregivers are sick or have other personal issues that prevent them from being on the job, it is stressful for me.

These situations have always occurred periodically since I first engaged paid help six years ago in September 2017. In the beginning, this was a minor issue. For the first three years and two months, the caregivers’ responsibility was simply to be a companion for Kate, and we had help only three days a week for four hours a day. If a caregiver was late or unable to come, it was not a big problem.

Life is very different now. For almost three years, Kate has required Total Care. Without help, I can’t get her dressed, out of bed, and into her wheelchair. I need help more than ever.

That leads me to another problem – getting someone who can come regularly. For the past two-and-a-half years, we have been fortunate to have two different people who were with us for eight hours a day Monday through Friday. One of them was with us for a year and a half. The other left after a year. To cover the weekends, We have had two people who alternate weekends. One of those has been with us two years this month, the other person has been with us for close to a year.

Four weeks ago, our latest Monday through Friday caregiver developed a health issue of her own and had to resign. The agency that provides our caregivers has had trouble finding people who would commit to a full 8-hour shift. As a result, they have divided the day into two shifts of 3-5 hours. Since then, we have had 28 new caregivers. On top of that, one of my regular weekend people called two Saturdays ago to say she couldn’t come. Another new person came to take her place. That makes 29 new people in four weeks.

I am working hard to maintain a cool head, but I have to admit that it has been quite stressful.

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.

Happy Anniversary to my wife, Kate. Sixty years ago today, we began the greatest adventure of our lives. Well, it actually began with our first date during our senior year of college and a year and a half before the wedding.

We had quite a courtship. Less than a month after that first date, I took a job at a funeral home where I worked 4 nights a week. I was a college student strapped for cash and time to date, so my job played a big role in our romance.

On nights that weren’t too busy, Kate would join me at the funeral home where we cooked hamburgers on a grill in the parking lot. Then we adjourned to one of the empty viewing rooms where we watched TV as we became better acquainted. I also took advantage of the flowers that fell as we moved from the funeral home to the cemetery and passed them along to her whenever I could. One of the things I remember most was taking her with me when I was assigned to pick up a body in another city. I was on the company expense account, and the management let me include Kate. We would enjoy a nice steak dinner without costing me a penny.

Less than six months after our first date, it was even obvious to Kate’s parents that ours was a special relationship. After my dad died, I found a letter Kate’s mother wrote to my parents. Here is a quote from that letter.

“I wish you could be experiencing with us all the fun and excitement of their friendship. Yesterday was the 19^th and on Dec. 19^th, Richard had his first date with Kate to attend the “Messiah.” So they celebrated a six-month ‘dating anniversary’ with 6 lovely red roses. They have such a wonderful time, and it keeps us young just watching them.”

We married eleven months later, launching a lifetime of joy and adventure. We have two great children, and five grandchildren. We have lived in four different cities, traveled, and enjoyed memorable times with close friends and acquaintances.

Late in life, we have faced a few bumps in the road. The first and biggest was Kate’s diagnosis with Alzheimer’s 12 years ago this past January. Then 2 ½ years ago she spent 8 days in the hospital with Covid, and in February a year ago, she suffered a stroke. But through it all, we have continued to enjoy life and each other.

“Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away . . . And now, these three remain: faith, hope, and love. But the greatest of these is love.”

Life has a lot of twists and turns and highs and lows. As Kate’s Alzheimer’s progresses, I am more mindful of such variations. The good news is that we still have far more highs than lows. New Year’s Eve and New Year’s Day have been among the highs. As I’ve said before, that doesn’t mean her memory improved or that her confusion disappeared. It means that she has been in a good mood and that we have enjoyed ourselves to the fullest.

Both days were low-pressure ones. Except for our dinner reservations New Year’s Eve and our 12:30 lunch reservations yesterday, we didn’t have any time-specific obligations. That makes both of us more relaxed. After lunch yesterday, Kate rested on the sofa while I watched some of the Alabama/Michigan game. She rested about two hours and was asleep most of that time.These two days were a great way to bring in the new year. It reinforces my belief that we have been very fortunate.

In a post one year ago, I noted several significant changes that had occurred in 2018. Among those were starting to forget my name and hers, recognizing me as her husband, greater confusion (often forgetting our house and how to get around in it, the city in which we live), sleeping later in the morning that led to our typically going to lunch rather than to Panera, and greater dependence on me with things like toileting, showering, and dressing.

For the most part these are the same things that I would say about her changes in 2019. The difference is that everything is noticeably worse than before. The exception is sleeping. That has become more erratic. On the whole, she still sleeps later than she used to do; however, she isn’t consistent. Sometimes she gets up earlier. She routinely rests right after we get home from lunch. That normally lasts at least two hours. Until recently, she hasn’t slept much while resting. Now she seems to drift in and out of sleep. She does seem to be more tired than in the past. I believe that is a result of having to work harder to get through the day.

Two other changes are worth noting. One is her physical mobility. Getting into and out of chairs or up and down steps requires a lot of thought and effort on her part. It was during this year that I got a handicap placard for the card. I have only used it a couple of times, but I expect to use it more in the coming year. Most places we go I can find a parking place that is reasonably close to where we are going, and I want her to walk as much as she can. I am, however, much more sensitive to parking than I used to be. There are at least three restaurants that I would visit were it not for the difficulty getting in because of parking or stairs.

The other thing is her problem with speech. The past six months her loss of vocabulary became obvious. I am sure it has been diminishing gradually for a long time. I suspect most of that loss has been words that we don’t use very often. Now she is forgetting words that are in everyone’s daily vocabulary. In addition, it is much harder for her to express herself. She starts to say something and then says, “You know what I mean.” If I say that I don’t, she gets irritated with me.

As I said last year, I can’t predict what lies ahead in 2020. I only know that this is a progressive disease. She won’t be better. In fact, the last year has been one in which her decline has been more rapid. Her experience on Monday of this week when she was unable to make a lot of sense throughout the day may be a sign of things to come.

Next year at this time we will be looking at a move to a local continuing care retirement community. When I checked a couple of weeks ago, I learned that they are on schedule to be ready for occupancy in January 2021. That means I will soon need to begin making preparations for a move. When I made the commitment in May, I felt that it would not be a problem for Kate. Now I am beginning to wonder. She still likes our home here. Although she doesn’t know her way around the house, and except for mornings, she seems to have a comfort level being here. I think her confusion in the morning is because she wakes and doesn’t recognize where she is. If that continues, it should not make much difference where we are. In addition, a smaller place might actually be easier for her. I just don’t know, and I’m not going to worry about it now. We have taken everything a step a time since her diagnosis. That has involved many gradual changes along the way. I expect the changes this year to be more significant, but I feel I have a game plan that is working. In addition, I have the flexibility to shift gears as needed.

Having said that, I am now recognizing that life as we have known it for the past nine years is passing away. I am particularly mindful of the things that have dropped out of our lives in recent years – our last summer to host grandchildren, our last international trip, our last visits to Chautauqua, to Kate’s home in Fort Worth, to Texas to share Thanksgiving with our son and his family, and to Memphis for Christmas with our daughter and her family. I don’t expect this to have been my last Christmas and New Years with Kate, but I know that it won’t be the same next year. I confess to more than a bit of sadness at that thought, but I believe I will adapt this year in the same way I have done before. I’ll keep my focus on Kate’s happiness and celebrating what she can do as opposed to what she can’t. I am still amazed at how much she can enjoy life. She may well continue enjoy life through 2020. My intent is to stand by her as long as she can and thereafter.

I’m not really a writer; I just play one on TV (whoops, I mean this blog). What I mean is that I have neither the desire nor a special talent for writing. That would be especially true if I were writing fiction. Let me explain.

In this blog, I simply attempt to present an accurate account of what “Living with Alzheimer’s” is like for Kate and me. That doesn’t require any special creativity. It does demand that I pay attention to what is going on and write down my observations as quickly as I can. That has worked for a long time. While I wouldn’t say that every post does a particularly good job of that, I do think readers can get a pretty good idea of what life is like for us if they are regular or even periodic readers.

Recently, I find that so much is happening that I can’t remember everything and don’t have the time to make adequate notes during the day. That fact has made me appreciate the writers of fiction, especially those writing about the lives of caregivers and people with dementia. They always seem to have the necessary knowledge of dementia and the ability to write realistic portrayals of what it is like along with telling an interesting story.

For quite some time, I don’t believe I have given proper credit to the work of such writers because, after all, it is fiction. That couldn’t be as good as the “real thing” could it? However, I now feel that my own non-fiction account is somewhat compromised because of my failure to remember relevant events or conversations. There is simply too much coming my way to remember all of it. If I were a fiction writer, I could just create a situation that conveys the same message, but that has two problems for me.

First, is that it seems awkward to mix fiction and non-fiction. The reader might be confused about what is fiction and what is not. I don’t want that. Second, I don’t feel like I am sufficiently skilled to write a convincing fictional account of our lives. With that in mind, let me attempt to describe a significant change that is taking place.

From the beginning, Kate was quite normal. That’s how the story begins for all of us. In fact, she was so normal that she wasn’t concerned at all when she had her memory slips. Sometime later these slips became more common. I heard her say, “I think I have Alzheimer’s.” I gave her the typical, and truthful, response. “Everyone forgets once in a while. You’re all right.” We continued this exchange off and on for the next four years or so. She began to get lost when going somewhere in the car. We had several episodes in which I had to give her directions over the phone or drive to where she was so that she could follow me home. I began to recognize she was right. Finally, we talked with her doctor and went through the process of getting a diagnosis. It really was Alzheimer’s.

When we think of Alzheimer’s, or any other dementia, we tend to see an image of a person who is in the advanced stages of the disease. That is usually the “tip of the iceberg.” For much of the time, a person with dementia behaves quite normally. That is one of the good things I have learned since Kate’s diagnosis. That has enabled us to live rather full lives despite Alzheimer’s.

Now that she has reached the last stage (that can last years), we experience more dramatic changes. For the first time, I see what I have heard other caregivers talk about. It is a blending of what is normal and what is not, or, as I put it in the title, a blending of our world (yours and mine) and her own. She lives in both and shifts almost seamlessly between the two. Increasingly, she lives in both worlds at the same time.

Most often I have illustrated this blending with a story about Kate’s responding to me perfectly normally and then saying something like, “I love you. What is your name?” Now I see it in interactions like we had last night.

We had a good day though she wasn’t as talkative or cheerful. I don’t recall that she asked my name or hers the entire day. We came home from dinner, and everything was fine. I pulled up some YouTube songs from the musical Annie and then My Fair Lady. She enjoyed them. Then we started to get her ready for bed. We started with the bathroom. After brushing her teeth, she washed her face and arms. She rubbed them as though she were trying to get something off. That’s when she said, “Look. Can you see what I am doing?” I said, “Yes, you’re washing your face.” She gave me a look of irritation and said, “No, can’t you see that I am getting them.” (She frequently talks about things that are on her body. Often she gets one on her finger and shows it to me. I’ve never been able to see anything.) Having been through this before, I said, “Oh, yes, you’re doing a good job.” She said, “Well, it takes a while, but it’s worth it.”

From there we went back to the bedroom. Before getting into the bed she sat down and crossed one leg over the other so that she could work on her toes. This is one of her rituals in which she runs her fingers between her toes “to get them out.” She wanted me to watch. I was obedient. Then she wanted me to do it for her. I told her I had another way to do it. I got a hand towel and rubbed it several times between each toe. When I didn’t do it to her satisfaction, she told me I missed a spot and to do it over.

Then she got in bed and started pulling her hair. Again, she wanted me to watch. She said, “I want you to know what I am doing.” I knew what was coming next. She wanted me to do it for her. This time I told her I thought she did a good job and that I wouldn’t be able to do it as well. She accepted that. I should emphasize that during this entire time, she was talking normally as she always does. It was only what she said that was strange.

These days I never know how she will be from one moment to another. It keeps me on my toes in terms of how to respond to her. Fortunately, I’d say that more than 90% of the time when she is in her world, we are able to enjoy our time together. That’s a big plus for me. I know that isn’t true for all couples “Living with Alzheimer’s.” I do, however, believe that is a hopeful message for others traveling this same road. It is possible to live happily with this disease. Kate and I are not alone. I have read a number of accounts of other couples who have had similar success, but most have grimmer stories to tell. I wish everyone were as lucky as we have been.

My optimism paid off. When Kate finally got up, she appeared to recognize me. Last week, I received a shipment of new clothes I had ordered for Kate online. I selected something for her that looked very nice. That made me think about going to lunch at Andriana’s since we are planning to be in Nashville on Sunday. When I checked with our server to see if she was working at lunch, she wasn’t. I decided to try another restaurant that is nearby, Sunset Café. Like Andriana’s it is a cut above the average places we eat, and we don’t eat there often.

On the way, I played an album of Frankie Valli and the Four Seasons hits. Kate and I laughed about most of them. They are so dated now, but we still enjoyed them. We also had a good lunch. We are now back home where Kate is now resting on the sofa across from me. That is her customary pattern now. She has a hair appointment in thirty minutes. After that we’ll have another break before going to Casa Bella for opera night. That’s sure to be another hit. After a rough start, it looks like we will have yet another good day.

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

If Kate were unhappy, frustrated, or disturbed, I could easily have been depressed yesterday. Instead, I am adding this to our long list of good days. It began in the morning and lasted until we turned out the lights for the night. Kate was in an especially good mood. I don’t mean to suggest that her primary Alzheimer’s symptoms were any less than usual. As I mentioned in my previous post, she was especially dependent and insecure at 4:30 a.m. What was different was her mood. She was happy and contented. This was reflected in the way she responded to me and the sitter.

After getting up in the early morning hours and again around 8:30, she slept until almost 11:00. That’s when I checked on her and found that she was awake but still in bed. I sat down beside her and told her I would like to take her to lunch. She smiled and said she would like that. Some mornings she lingers a good while before getting out of bed. This time she got up rather quickly, and we left for lunch about 11:45.

On the way to lunch she asked my name several times. When we got to the restaurant, she continued to ask my name and hers. Consistent with previous occasions, she did not seem frustrated over not being able to remember the names. The style of the conversation was just like an easy one between any husband and wife or two friends. Anyone who might have watched us from a nearby table would never have imagined that she was asking my name, trying to repeat it, failing to do so, and asking again. This was another of those occasions when she wanted me to tell her about her mother. She loved hearing me tell her what her mother was like and how her mother and father met. She was also curious about our children, and I filled her in on them. In our conversations she keeps returning to her parents, her family, and our children. There is no mistaking their importance to her even if she can’t remember their names or much else about them. I love being able to tell her about them. I never tire of it even though it is something I need to repeat over and over and over. This is a sign of adapting. During the early years after her diagnosis, I could not have imagined deriving any measure of satisfaction as her memory vanishes. The people who know this disease say that caregivers need to live in the world of the ones for whom they care. Fortunately for Kate and for me, I am able to do that. It didn’t come overnight. It has been a long slow progression.

On the way home, she asked me the nature of our relationship. I told her we were married. She was surprised. She wanted to know how long we had been married and if we had children. All of these questions were asked innocently as though we had never had the previous conversation while at lunch. As much as I see this, it always takes me aback when it happens.

When we walked in the house, she asked me if she could take a nap. I told her that was fine. She brushed her teeth and then proceeded to get in bed when the sitter arrived. Mary walked over to Kate and gave her a hug. Then she said something that really surprised and pleased me. She told Mary that she was glad to see her, that she wouldn’t want to stay at home by herself. I told Mary that I was about to put in a DVD for them to watch and asked if they had any preferences. They quickly agreed on Fiddler on the Roof. I set it up for them and started to leave. Then Kate said, “She’ll take care of me. Well, we’ll take care of each other.” I left feeling good.

When I returned, they were in the family room where Kate was looking through “The Big Sister” album that her brother Ken had made for her. Mary left, and I sat down with her and went through the album for another twenty minutes. I really enjoy seeing her go through the album. She gets so much pleasure from seeing pictures of herself, Ken and her family. I know this is exactly what Ken was hoping for when he made it. This is something else that provides joy for me as well. It is a very simple pleasure but a powerful one.

It wasn’t long before Kate was ready for dinner. We left for our Friday night pizza. When we got home, we relaxed in our bedroom. Kate worked on her iPad while I watched the evening news. Then I turned on a YouTube video of Messiah.

After we got to bed, I told her I loved her. She responded the way she has on several other nights. She laughed. When she does this it is because she thinks we are in the early stages of our relationship, and it seems too early for love. I said, “You love me, don’t you?” She said, “We’ll see.” I said, “I guess we could just go on living together.” In a serious tone she said, “Don’t ever say that again. I’m surprised you would say that at all.” This situation seems so incongruous. We were lying close together, and my arm was around her. A few minutes later she asked, “Where are we?” I told her we were in our bedroom in Knoxville.

Kate was getting dressed when I went to check on her at 10:30 this morning. She asked my name. I told her, and she said, “I knew that. I just couldn’t remember. What’s your name again?” I told her again. She said, “Oh, you’re a nice guy.” Then I said something about our being married. She said, “We’re married? How did that happen?”

She sat down in the family room to take her morning meds. I heard her call my name. (She still does pretty well recalling my name when she needs something. I suspect it is a conditioned response. It occurs without thinking.) She had noticed a TCU magazine on the table and asked if she could take it with us. A minute or two later, she had forgotten asking me. She asked, “Is this ours or theirs?” She may have been thinking we were in a hotel. I told her it was ours. She said, “So I can take it with us?”

As we were leaving for lunch, she decided to use the bathroom. She pointed to the door beside her and asked, “Is this a bathroom?” I confirmed her suspicion. It’s just another indication of how the house is becoming less familiar to her.