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Five years ago this month, Kate had Covid and spent eight days in the hospital. That was the catalyst that pushed her into Stage 7 Alzheimer’s, the last stage. Since then, she has required total care. We feed her, bathe her, dress and change her, and get her in and out of bed and wheelchair with a lift. None of us would like to be in her position. The fantastic thing is that she is happy.

I often comment about the “Happy Moments” she experiences. These are times when she seems to be at ease. She smiles. She laughs. She talks, although we can’t understand most of what she says because of her aphasia.

She has moments like this every day. I refer to them as “moments” because they do not occur throughout the day. Her day is also filled with what I call “Neutral Moments” when she is neither happy nor sad.

Once in a while, her days are filled with “Happy Moments” from morning to night. On days like that, she is cheerful when she begins the day and retains her cheerful spirit as we put her to bed.

Yesterday was one of those days. In fact, I believe it was the best day I have seen since before she had Covid. It was thrilling for me and for many others who hadn’t seen her like this before.

I don’t predict her behavior, so I don’t know if we will have a repeat of yesterday. I do know that she’s been getting better for the past two or three years. That is especially true for the past month. I also know that one day she will take a downward turn. In the meantime, I will treasure every moment or day I have with her.

Life is full of surprises. I find that is especially true with Kate while “Living with Alzheimer’s”. Even more surprising is that many of the surprises during Stage 7 (the last stage) have been happy ones. One of those occurred yesterday.

I often comment about our “Happy Moments” that occur when she is cheerful. I call them moments because they happen off and on, not all day. Yesterday was special. It began just before 8:00 am when I heard her say something. I went to the bedroom to check on her and found that her eyes were open. As I approached her, she gave me a big smile, clearly recognizing me —something that doesn’t happen most mornings. We chatted briefly before I went to the kitchen to get her morning meds.

After giving her the meds, she was still in a very cheerful mood. I took that opportunity to hop into bed beside her. That began an hour-and-a-half conversation. As always, I understood little of what she said, but it was clear that she was happy. She laughed as she told me whatever was on her mind. It was a great way to begin the day.

She was still happy when I left for my weekly Rotary meeting. Upon returning, she greeted me with a beautiful smile. Later, when we went out for ice cream, she was still cheerful and surprised two residents who come by to see her almost every afternoon. Both of them got to see her smiling and talking. They look for that every day, but it only happens once in a while.

We closed the day with a very special time after the caregiver left at 7:00. She didn’t say much. I did most of the talking. I recounted a number of special times together going back to our dating, marriage, and having children. She continued smiling, and we both drifted off to sleep with music playing in the background.

It was the kind of day we could never have imagined following her diagnosis. We are fortunate and very grateful to enjoy life and each other so late in our journey with Alzheimer’s.

Why have we gotten along so well?

After Kate’s diagnosis on January 21, 2011, we talked a lot about how we wanted to respond. We decided to simply enjoy life and each other as long as we could. At the time, we were uncertain how long that would be. We just began living in the moment, and that has paid great dividends.

Looking back, I believe there are two major reasons for our success. The first is that we accepted the losses we have encountered (and still encounter) and focus on what remains.

The second reason is that when we chose to “enjoy life and each other,” it led to activities that Kate could appreciate. Progressively, she lost many abilities. We let go of the activities that required those abilities and focused on things she could still enjoy. For almost five years, she has been in the last stage of Alzheimer’s (Stage 7), but we are still able to find ways to enjoy life and each other.

That’s because the things we chose to enjoy have been things like music that she can appreciate intuitively via her senses. We have binged on music since her diagnosis. The other is that we have remained as socially active as possible. I should also add that I have smothered her with affection. She knows she is loved.

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Last night, Sarah surprised me with a “Happy Moment” that I won’t soon forget. We were in bed after the caregiver left. We typically spend a while watching YouTube videos, but I decided to try something different. I put on a DVD of ”The Sound of Music.”

I was hesitant about doing this because she hasn’t enjoyed watching TV for several years. Even when I have YouTube videos running, she doesn’t seem to watch. She just listens.

To help her follow along, I told her about the characters and what was happening. I was surprised to see that she seemed to follow and enjoy the movie. Although I couldn’t understand most of what she said, her smiles, laughter, and other audible reactions conveyed her feelings.

As it came time for us to call it a night, I asked if she would like to finish the movie “tomorrow” and listen to some of our audio music until we fell asleep. She rarely gives an answer to such questions, but she moved her head to say “No” and smiled when I said I would leave the movie on.

Ultimately, I did turn off the movie and put on some music. I hadn’t seen her engaged in anything on television in a long time. It was a beautiful way to end what was already another nice day with the love of my life.

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.