Welcome to Living With Alzheimer’s

March 1, 2021

This site consists of a journal I started on January 21, 2011. That was the date on which my wife, Kate, was diagnosed with Alzheimer’s disease. It is an account of our lives since that time and includes the symptoms Kate has displayed as well as how we have adapted. You will also learn about our frustrations and problems.

What may surprise you is how much we have been able to enjoy life and each other even as we experience the toughest challenges of this disease. In that respect, we have been more fortunate than most couples who travel this road. Kate has declined significantly in recent years and has been in the last stage of Alzheimer’s about two years. We both tested positive for COVID two weeks before Thanksgiving, and Kate spent eight days in the hospital. She recovered quickly from the physical effects of the virus but is still recovering from the trauma of being taken to the hospital by ambulance and the whole hospital experience. Although our lives have changed significantly, our relationship remains strong.

When she returned home from the hospital, I increased our in-home care to 7-8 hours a day seven days a week. She has made a gradual recovery but continues to be frightened anytime we have to move her in anyway while caring for her essential needs. For years, she has been frightened by many things, especially sudden noises. Her hospital experience added an additional source of fear.

I don’t know what life will be like a year from now, but I plan for us to enjoy ourselves as much as we can for as long we can. That seems to have worked in the past, and I am hopeful that it will serve us well in the future.

Thanks for your visit.

Richard Creighton                                                                                                 @LivingWthAlz

“Happy Moments” Make for “Happy Days”

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

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

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

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

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

How is Kate?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tender Moments at Stage 7

Yesterday, I worked on a draft of a new post focusing on Kate at this stage of her Alzheimer’s. I haven’t finished, but we had an experience during the afternoon that I decided to tell you about first.

I often think of the fact that our relationship has changed so radically over the course of Kate’s Alzheimer’s. Many things that were a regular part of our lives are now gone, but love remains and makes itself known to each of us every day. One of the changes is that she no longer does things with the deliberate intent of making me feel happy.

When she does express her affection for me, and I don’t believe a day passes without her doing so, it is a simple, often non-verbal, expression of her love. That would not be enough for some people, but it is for me. The impact of simply reaching for my hand has great impact, something that would not have had the same value early in our relationship.

We had one of those experiences yesterday. The caregiver and I started to take her out for a stroll around the hallways and to get a milkshake when she became upset. She refused to put her feet on the footrests of the wheelchair. That not only makes it harder to push her, it runs the risk of twisting her feet and legs as she drags them on the floor. I suggested to the caregiver that we back off, give up the idea of going out, and just focus on calming her. She was sulking as we went out on the balcony.

I put on some music that I thought might calm her. Then I took her hand and spoke to her very gently. I expressed my love for her and talked about our falling in love in college, getting married and having children. I spent at least 30 minutes doing this without her displaying any change in mood. Then I said something she thought was funny. She smiled and laughed. I said, “I guess you think I’m a silly guy.” She responded quickly and firmly with a “No.” That opened the door for me to mention how much I like her smile.

We sat quietly for a few minutes while the music played. Then she looked at me while pulling her hands together and held them close to her chest as though she were trying to tell me something. She followed that by extending her hand to me. I reached out to take it, and she pulled it to her chest and held it tightly. We looked in each other’s eyes, and I said, “I love you. I always have. I always will.” It was a tender, yes, romantic moment, for both of us.

Settling in Part 3: My Adjustment

Eleven weeks ago, Kate and I moved into our new home (apartment) in a local life plan retirement community often called a continuing care retirement community. In two previous posts, I described the changes in our in-home care and Kate’s adjustment to the move. Today’s post deals with how I am doing. With one exception, I can say that my report is just as positive as the others. Let’s deal with the positive first.

Shortly after moving in, I went through a period of disorientation. All of my routines were disrupted. It was a little like starting from scratch – new grocery store, new pharmacy, new part of town, new apartment and a bit of confusion over where various things had been put by the movers, as well as a temporary cessation in my daily exercise. Within 2-3 weeks, I was recovering from that and am now quite comfortable.

At the same time, I found our new environment very much to my liking. After months of preparation for the move, it was a relief to be settled into a new home. That likely would have happened no matter where we had moved, but there are several aspects of this community that I find especially appealing.

We’re in a new building that opened the end of February, and I like our particular apartment. I had had a little concern about living in a place one-third the size of our previous home; however, I had always liked the floor plan. Everything is very efficiently arranged. We have two bedrooms on either side of a large open area containing the kitchen, living area, and dining area. We also have a 16-foot balcony overlooking a courtyard below. It felt right the very afternoon we moved in. Now that we have been here a while, I find that it suits our life style quite well. I haven’t missed the space we left behind at all.

Apart from the apartment itself, there are other things that are more important to me. Some of them are things people generally expect from from life plan communities. They simplify life. I am relieved of almost all the personal responsibilities required in our previous homes. Not having to hire help with cleaning, repairs, or the wide arrange of maintenance issues was never a great chore, but it is nice to leave that behind.

Among the big benefits is availability of daily meals. I still fix my morning breakfast and like it that way. I value my morning routine that had been somewhat disrupted right after the move. For a short time, I continued to fix a simple lunch but gravitated to going downstairs to the salad, soup, and sandwich bar. I eat there every day but Wednesday and Sunday when I go to restaurants I have frequented for lunch for more than five years.

Kate and I do not eat lunch together. That’s because she doesn’t usually wake up before noon and isn’t ready to eat until 1:00 or shortly thereafter. At night, I bring in meals from the dining room. Kate and I eat together in the apartment. I like that.

Speaking of meals, living here has also been accompanied by a change in my eating habits. I eat more soup and vegetables than I ever have before. That relates directly to the way they are prepared. Most of the soups are quite good, and the vegetables are nicely-cooked. I’m especially fond of their broccoli and asparagus. For years, I have enjoyed salads, and the salad bar downstairs offers a wide variety of ingredients to make salads to suit my particular preferences.

Although our balcony doesn’t provide as beautiful a view as we had at our home, we have taken greater advantage of it than the patio we had. We spend some time there with the caregiver almost every day. Now that it is hotter, we are eating early. Then we go to the balcony until time for the caregiver to leave. It has provided more relaxing moments than I expected. By the way, I am writing this post on the balcony enjoying a gentle breeze (from our ceiling fan) and a light rain.

Our new routine also involves other relaxing moments as well. At the top of the list would be taking Kate around the interior of the buildings. It gives her a change as well as an opportunity to meet other residents and staff. Several times, we have gone to the ice cream shop. The ice cream is good, and we have spent as long as 45 minutes relaxing while encountering other residents.

That leads me to say what I believe is the most important benefit of living here. It provides significant opportunities for social activity and interaction. As my closest friends know, I’m a bit gregarious. Despite Kate’s Alzheimer’s and the pandemic’s lessening my social contact, I never felt isolated as do so many people in my situation. A lot of that was because we ate out for all lunches and dinners for at least eight years. I also remained in contact with people via email and telephone and continued to serve on committees at church and several community organizations.

The move, however, has substantially increased my daily social contacts, and I am thriving. It’s hard to walk out of the apartment at any time of day without bumping into someone and engaging in a brief conversation. One of our caregivers has joked with me about how long it takes me to run down to the dining room to pick up our dinner because I get into multiple conversations along the way.

So, what is the one exception to how positive my experience has been? Here it is, and it has nothing to do with the move itself. Several weeks before the move, I began to experience a rash on my back and other parts of my body. My dermatologist took a biopsy and found that I have eczema. She gave me a prescription for prednisone and a cream that helped but did not eliminate the problem. She recommended changing the detergent used to wash our clothes, the soap I used for bathing, and hand lotion. In addition, I started using an over-the-counter cream to replace the prescription that had expired.

The rash subsided somewhat but flared up in the past week. For the first time, it hit my face around my eyes as well as spots on the right and left sides of my neck. The itching isn’t pleasant, but I have been more annoyed by the places around my eyes. I feel awkward when I leave the apartment. I find myself explaining the problem everywhere I go. The good news is that the dermatologist gave me a new prescription that seems to be working. We have also scheduled an allergy test in an effort to determine what is causing the problem.

Other than that, life is good, and I am adjusting quite well.

Addendum to Previous Post: Another Breakthrough

Right after writing my previous post, we added another success to those I mentioned. For the first time since Thanksgiving (seven months), we gave Kate a shower.  Prior to that we had only given her bed baths.

The amazing thing is how well it went. It had been a day of ups and downs. She was awake early and not talkative but relaxed and in a good mood. I spent a good bit of time with her prior to the caregiver’s arrival. The first thing Adrienne does is to ask how Kate is doing. I told her it looked like a good day, but she was a bit slow in getting going.

I left for lunch. When I returned, Kate was in her recliner, but she wasn’t happy. I made an unsuccessful attempt to change that. I decided to do what Adrienne had already done, not bother her for a while. An hour and a half before dinner, I suggested we go out to the balcony. Kate said she didn’t want to go, but I reminded her how much we liked it. Then Adrienne and I took her. She was sullen the entire time.

On Monday, Adrienne and I had talked about the possibility of showering her on Tuesday. When the time came, her mood led me to table those plans. We decided to wait until she was in a better humor. That happened more quickly than either of us could have imagined.

Everything changed at dinner. She almost always enjoys her meals, but she was especially enthusiastic this time. She was on a high. I talked with Adrienne about going ahead with the shower, but I indicated I didn’t want to push her. She agreed.

I walked over to Kate and very calmly told her I thought that she might like to get a shower before getting ready for bed. I was prepared to say a lot more to encourage her, but she responded favorably. Adrienne and I went into action quickly but without rushing her. I changed into my gym shorts and warmed up the water for her. We transferred her from her wheelchair to her shower chair (that had never been used), and into the shower we went.

It went swimmingly well. Kate didn’t make even the slightest protest. At one point, she even lifted her arms, looked at Adrienne and said, “Over here” to get her to spray the water. Everything went well for all three of us. Adrienne and I are eager to try it again. We’re on a roll but not naïve about how quickly moods can change. This particular experience illustrates that beautifully.

Settling In Part 2: Kate’s Adjustment

In “Settling In Part 1,” I outlined the positive changes we’ve experienced with in-home care since our move. During the same time, there have been similar improvements in Kate’s behavior. She is much less frightened than she was when she came home from the hospital at Thanksgiving. That makes the experience of tending to her needs less disruptive for her. As a result, it is easier for her caregivers and me.

The biggest problems we’ve faced involve some of the basic things we have to do to care for her. That is mostly the process of changing her as well as getting her in and out of bed, her wheelchair and her recliner. As she has become more familiar with the process she has become less frightened and more cooperative. It’s not something she likes at all, but she is more accepting.

From the beginning, I’ve played an active role in these activities because her first response is to fight back with her hands. As one might expect, she has been particularly bothered by being changed. My part is mostly to calm her. In the gentlest voice I can muster, I tell her what is about to happen and that we need to help the caregiver by relaxing. I ask her to hold my hands tightly. That was tough for her at first, but in the past couple of weeks she has gotten much better. She seems to find security in holding my hands.

There’s a tendency to think that someone in the last stage of Alzheimer’s can’t learn at all, but we have seen signs that she can. This does not occur through her rational, but her intuitive ability. It’s not because she understands and remembers what we have told her to do. It is simply through experience that she is beginning to learn. One example involves our use of a lift to get her in and out of her bed as well as her wheelchair and recliner. She is learning where she needs to put her hands. That’s not only beneficial from a safety standpoint, but it keeps her from grabbing and holding on to something (like the arms of her wheelchair or recliner) that makes lifting more difficult for us.

She surprised me over the weekend when I took her on a tour around the other buildings. She told me to “watch out” as we approached an area where the tile floor ended and a carpeted section began. She has learned from experience that changes like these mean “bumps,” and she doesn’t like even small ones.

We’ve also been able to make important changes in her daily routine. We get her up daily, if not for the entire afternoon, for dinner. We relax on the balcony almost every day. Recently, she has been out of the apartment five or six times. Each time I have introduced her to other residents. Over the weekend, I took her out twice without the caregiver. One of those days, we stopped by our coffee shop for ice cream. I don’t know the full benefit of these outings and encounters, but I believe it’s good for her. It gives her a better feeling for everyday life, and I plan to keep it up.

I’ve also been pleased with recent efforts to read to her and to look through her photo books. Both of these have been of less interest to her in the past few months. I’ve had success with The Velveteen Rabbit in the past two weeks as well as at least one look through the photo book I gave her for our recent anniversary.

She still wakes up between 11:00 and noon, but she is occasionally wide awake much earlier. That allows me to get her morning meds earlier as well as getting her something to drink and a snack before the caregiver arrives. This is not a frequent occurrence, but it happens more often than in the past. The bonus is that several times I have gotten in bed beside her and read to her, looked at a photo book with her, or just worked on my laptop while she rested. It has been good to have that extra time with her without the caregiver’s being around.

We have two other goals: to get her hair done in the salon downstairs and to give her a shower. We may try the shower this week.

I should add that I attribute much of Kate’s improvement to the consistency we have with out in-home care. I am especially grateful to Adrienne, the caregiver who is with us 10 out of every 14 days. She has played a major role in the establishment of a regular routine.

There are two things that I don’t expect to improve. One is her Alzheimer’s. The other is her mobility. I don’t believe she will walk again although her recent progress has encouraged me to think about attempting it. That’s something I won’t pursue without the help of a physical therapist.

All in all, Kate seems more relaxed and happy. Her quality of life has gotten much better, and that means it has for me as well. We’re making progress.

On a 1-10 Scale, Wednesday was an 11.

Just over two weeks ago, Kate and I celebrated our 58th wedding anniversary. That morning I wrote a post saying the day before she gave me the perfect present. She was  in a cheerful mood all day. I commented that if she wasn’t the same way on our anniversary day, it was just fine. She had given me enough to keep me going for a while.

I bring this up because yesterday was my 81st birthday, and the day before that was even better than the day before our anniversary. My feelings were the same. Although I would have loved it, she didn’t need to be as upbeat as she was on Wednesday to make me happy. Experiencing the pleasure of her joyfulness will last a long time, and Adrienne, our caregiver, got as much pleasure out of it as I did.

She was just waking when Adrienne arrived at noon that day. I left soon after for my usual Wednesday lunch. When I returned, she was in her recliner. Adrienne said that she had been happy and cooperative when she got her dressed and out of bed.

An hour later, we took her for a stroll around the interior of the campus. We went to the wellness center and met three of the staff. Then we toured the chapel. Along the way we saw a number of people who hadn’t met Kate. I was glad for them to meet her and for Kate to have the experience of getting out and engaging in normal activities. She was enthusiastic about going out and continued to be expressive throughout out our tour.

When we returned, we went to the balcony where we relaxed about forty-five minutes before dinner. It was a very pleasant afternoon, and we went back to the balcony for almost an hour after eating.

She was very cooperative as we got her into and out of the lift as well as when we got her ready for bed. It was her best day in many months. Everything seemed to go right, and that is something to treasure.

Settling In Part 1: In-Home Care

Eight weeks ago, Kate and I moved into our new home in a local retirement community. Over the weekend, I met a couple who moved in two months before we did. He told me what a big change it had been after living in their home over forty years in the same town in which they had grown up. I could relate to what he must have felt. All my established routines were disrupted, and I’ve been working to establish new ones.

I’m happy to report that we’re making progress.  Over the past two weeks, I’ve felt much more settled. That relates to three aspects of our lives that have improved significantly. In this post, I’ll tell you about Kate’s In-Home Care and follow that with posts about Kate herself and then me.

Prior to Kate’s hospitalization with COVID eight days before Thanksgiving, we had help from caregivers three afternoons a week, Monday, Wednesday, and Friday, four hours for each day. We maintained that schedule for three years. We were fortunate that the caregiver who came on two days a week was with us the entire time. We had 3 or 4 for the remaining day. During this time, the demands on the caregivers were minor. I just needed someone to be with Kate while I was gone. They didn’t have to be in charge of any of her personal needs.

We were approaching the time she would require more care when she and I tested positive for COVID. Before she entered the hospital, I arranged for 8-hour daily care for her. Our regular agency was unable to fill the schedule. That led to my adding a second agency that provided help the four days not already served by the first agency. I’m grateful for their coming to my aid on such short notice, and I thought all of the caregivers were able to perform the needed tasks. Unlike our original agency, however, they never provided the consistency that I wanted. During the 5 months prior to our move, they sent us 6-8 different caregivers. They were all competent, but it was impossible for Kate to develop a comfortable relationship with them.

Our move required some adjustment. Our retirement community has its own home-care agency (Caring Hearts), but they do allow caregivers from other agencies to work here. There were two catches. The first is outside caregivers have to complete the same requirements as their own employees. That involves background checks, an all-day orientation, and health requirements. In addition, there was a $320 charge to me for each caregiver. As it turned out, only two caregivers chose to go through the process, one from each of the other two agencies.

The best news is that one of our caregivers, Adrienne, was already employed by Caring Hearts as well as the agency we had worked with for three years. She is also our best caregiver. As a result, it worked for her to cover 10 out of every 14 days. She gets every other weekend off as well as every Friday. The caregiver who has been with us over 3 ½ years continues to come on Fridays, and Caring Hearts is providing a new person for the weekend Adrienne is not with us.

These changes have had two major effects. First, our daily routine is decidedly more consistent. Adrienne shares some of my OCD tendencies and has a steady routine. Second, It gives Kate a chance to develop a closer relationship with her.  She has 3 different caregivers rather than 6-8. Only one of them is new. She is young (19) and has limited experience, but she is a certified nursing assistant (CNA) and is in school to become a nurse and then a physicians assistant. I’m optimistic about her.

I am especially pleased with the daily routine. When Adrienne is here, I feel more comfortable about leaving and regularly leave for lunch on Wednesday and Sunday very shortly after she arrives. She is the only caregiver that gets Kate up and dressed without any help from me; however, I have been helping her when we take Kate to the balcony or outside the apartment. I also help her get Kate ready for bed.

Apart from her routine, I like other things that she initiates on her own. For example, she has designated Wednesdays as “Spa Day” for Kate. On that day, she does Kate’s nails. She also takes more time getting Kate up each day. She works very slowly bathing, changing, and dressing her. She’s very good about making sure Kate gets her fluids, something I have found most of our past caregivers haven’t made a priority. I almost forgot to say that Adrienne always fixes a nice breakfast/lunch for Kate every time she is here. She is French and make French toast, French omelets, and fruit. On top of these things, she doesn’t ask if there is anything she can do for me. She just does the things that need to be done. She regularly takes care of washing and drying clothes, taking out the trash and recycling, organizing, and letting me know when we need new supplies.

This change in care has had a noticeable impact on both Kate and me. I’ll say more about that in my following posts. At the moment, I’m just glad that our in-home care is working well, and that makes life better for both of us.

Our Relationship

First, let me say that Kate had been in a good mood all day. Second, nothing in my caregiver’s toolbox works every time. On the other hand, Kate and I still work well together most of the time. Here’s an example from last night.

Kate was awake very early yesterday, just before 8:00. In fact, in the past few days, she has been awake as early as 7:00. It’s not unusual for her to do this occasionally, but she typically goes back to sleep. Not so, this time, and I took advantage of the opportunity of being together. I got the photo book I made for our recent anniversary and jumped into bed with her. We spent a good while going through it together. This was a time when she was interested. We enjoyed reminiscing about all the things we have done together. We only stopped when she began to tire. Then she rested until the caregiver arrived.

The afternoon also went well. Kate, the caregiver, and I spent over an hour relaxing on our balcony. That’s becoming a regular part of our daily routine at least until the summer heat makes it less appealing.

Although she is adjusting to our getting her out of and back into bed as well as changing her, Kate continues to protest, at least a little, most of the time.  That was true when we got her into bed after dinner. As the caregiver started to pull her slacks down, Kate responded forcefully both verbally and physically.

I responded by getting into the bed from my side. She was holding tightly to the caregiver’s arm with one hand and her pants with the other. I spoke slowly and softly and asked her to take my hands. She didn’t release her grip. As carefully as we could, the caregiver and I took her hands and put them in mine.

Then I said something like this. “Sweetheart, it’s about time for Lilly to go, and before she does, she needs to get you ready for bed. She needs our help. I know you would like to help her.” She said she did. I continued, “What we can do is just relax and let her do what she needs to do. She’ll be very gentle. She knows how to do this. I know this isn’t easy for you, but I am right here with you. You can hold my hands and squeeze them as tight as you want.”

She began to relax. Lilly did what she needed to do, Kate never protested. The two of us talked about how much we appreciated having someone to help us. When she was ready for bed, she said, “Thank you” (to Lilly). A potential problem had been averted.

This recovery wasn’t a singular event. It grows out of our longtime relationship and individual personalities. We are both conflict avoiders, and each of us likes to please the other. That has carried us a long way in our marriage, but I never imagined that it could pay such benefits in the last stage of her Alzheimer’s. Will it last forever? Obviously, I hope so, but I can’t even be sure it will happen the next time we encounter a similar situation. Still, I’m optimistic that the nature of our relationship will continue to help us face future challenges as they arise, and I know they will.

Accepting Each Day As It Comes

“It’s a day to celebrate although I don’t know what lies ahead.” That’s a quote from my previous post in which I talked about our 58th anniversary and that Kate had given me the perfect gift the day before. As it turned out, the actual anniversary wasn’t exactly the way I would have liked although it ended well.

Unlike the day before, she slept late and wasn’t in a particularly good mood when she awoke. I decided not to wait until later to give her the anniversary card and photo book I had prepared. She is almost always more cheerful in the afternoon.

In my eagerness, I didn’t wait long enough. When I told her it was our anniversary and read her card, she didn’t show any emotion at all. It seemed like she knew I wanted her to be excited, and she was going to show me I couldn’t do it. I gave her the photo book with 95 pages of pictures of people and places that had been special to us the past 58 years. It was clear after showing her the cover and first couple of photos that I was facing a losing battle. I made a wise decision to try again later.

The opportunity came as we ate dinner. She enjoyed her food, and she became more cheerful. When she finished her ice cream, the caregiver went to the bedroom to get things ready for the night. I picked up the photo book and showed it to her. She took to it right away. It was too much to go through all of it, but she liked what she saw. She was cheerful and loving for the rest of the night.

Yesterday was a very good day. For the third time since we moved six weeks ago, the caregiver and I took her out of the apartment. For the second time, we walked through the park across from our building. We followed that by relaxing on our balcony until time for dinner. She enjoyed the day.

Of course, I would have liked the day of our anniversary to have been like the day before and the day after, but I had little or no control over that. By this time, however, I’ve learned the value of accepting each day as it comes. That doesn’t mean I simply give up and let it go. I always try to make things better. Sometimes I succeed; sometimes I don’t. I try not to push her. That only makes things worse. If I just back away for a little while, she often comes around naturally. One thing is sure. I know that the bumps in the road are going to occur, and I am encouraged with the knowledge that we’re also going to have more “Happy Moments.” I wonder what’s in store for today.