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One of Those Days

Kate and I have many good days, but not always. Sunday was one of those exceptions. It began around 9:00 when I got a call from the agency that provides two of our three caregivers. The one who was to come was sick, and they were looking for a replacement. They had identified someone who might be able to take her place, but she would be on overtime, and they wanted to know if that would be all right. I gave my approval.

A little later, I received another call telling me that person couldn’t come. After we hung up, I called them back to say that if they couldn’t get someone for the whole day, I would be happy to have someone for a short time to help me get her up for the day and return later in the day to help me get her to bed.

They found someone who could come under those conditions and that she would not be on overtime. They let me know that she was inexperienced and would need my help if I were agreeable. Since I’ve been an active participant in Kate’s care, I agreed.

When she arrived, I learned that she had been in training as a medical technician. She had taken a temporary position with the in-home care agency to make a little money before continuing her previous educational plans. It didn’t take me long to find out that she was not skilled in the kind of care Kate requires. She wasn’t good at changing or dressing someone in bed, and she had never used a lift for a patient.

This was not an ideal situation, but I began optimistically with the thought that I might have learned enough to make things go smoothly. I think of myself as a pretty good assistant to our regular caregivers, I quickly learned how unskilled I am in direct patient care and training of other caregivers. Trained and experienced caregivers clearly handle situations like this without any great difficulty. I won’t go through any of the details, but it took us at least twice as long to get Kate up and in her wheelchair. Fortunately, using the lift went more smoothly.

In addition, Kate was more confused and not as cheerful as she is other times. I’m not sure that I have mentioned that for the past 4-6 weeks she has had more experiences when she doesn’t recognize me. That normally disappears after I give her my name and tell her some of our history (where we met, falling in love, having children, that we have been happily married more than 58 years, and that I love her dearly ). After that, she usually responds to me as though she knows me. It usually lasts for the rest of the day or at least a few hours. On Sunday, she asked, “Who are you?” off and on until we retired for the night.

I’ve frequently mentioned that I like routine. This was a day that was far from that and, therefore, somewhat uncomfortable for me. That was particularly true in connection with the difficulties with a substitute caregiver. I had become comfortable and dependent on our regulars. A new and unskilled caregiver was an abrupt change.

Despite that, there are good things to report. For the first time, I took Kate for ice cream without a caregiver. We went down the main hallway that is officially named “Main Street.” Our building is at one end, and the café with ice cream is almost at the other end. It was a nice stroll and a treat to enjoy time to ourselves.

After the caregiver left that night, Kate and I had another good evening. At first, she couldn’t remember who I am. I gave her my routine explanation a couple of times and ended by telling her how much I love her. That seemed to stick. We watched YouTube videos with music by The Kingston Trio and The Brothers Four. The day ended well as it always has.

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Caregiving: An Exercise in Problem Solving

As noted in my previous post, life is going well in our new home. That doesn’t mean we don’t have any problems. Caring for someone with Alzheimer’s requires continual problem solving, but we do have successes. Among them is being able to get Kate out of bed every day, something we hadn’t been able to do for months after her return from the hospital on Thanksgiving. We also take her out of the apartment though hallways that connect us to all the other buildings in our complex. That’s been helpful in terms of introducing Kate to other residents, and stopping along the way for ice cream hasn’t been bad either.

We have encountered one troublesome problem during these outings. Kate doesn’t like her feet to be on the footrests of her wheelchair. She is quite strong, and the caregivers and I found that she stiffens her legs when we attempt to place each foot on its rest. We almost always succeed, but she protests loudly, something that stands out in our quiet hallways. Several times we’ve had to return to the apartment before going very far. When we succeed, she often takes one foot (her left) off the rest and drags it along the floor. That creates a safety hazard for Kate and also makes it decidedly more difficult to push the wheelchair.

I explored ways to address the problem for several weeks and didn’t find just the right thing. My initial thinking focused on the fact that it was her left leg that was the bigger problem and that it gradually worked its way to the right until the foot fell to the floor between the two footrests.

I talked with someone at a local medical supply store who wasn’t encouraging. He told me there are boards that are designed to be installed across both footrests, but he indicated a number of problems with them. Then I began to consider why Kate had so much trouble getting her feet on the rests to start with.

For months I noticed that she keeps her legs crossed while she is in bed. Since she is in bed about 18 hours a day, I wondered if she had experienced
muscle deterioration. A number of times I thought about having a physical therapist come out for an evaluation. I mentioned this to Kate’s doctor during her appointment two weeks ago. He took action for me and requested both a physical and an occupational therapist.

Before the PT’s first visit with Kate, I decided to check on Amazon for footrests that might address our problem. I found what looked like a potential solution the day the PT came. It’s a solid footrest that sits on top of the existing footrests and has a raised padded portion against which her calves can rest. I showed it to the PT who thought it was worth a try. I ordered it immediately, and it came in the next day. It works beautifully. We’ve used it four days in a row without a problem. When we put Kate in the wheelchair, her feet rest naturally on the new footrest. More importantly, she must feel comfortable because she keeps them there. That has made life much easier for Kate, her caregivers, and for me.

But, wait, there’s more. It turns out the therapist himself is the best I can imagine. He seems quite young but combines several important qualities, his knowledge, bedside manner with Kate, and a desire to explain what he does and why. In addition, he is able to explain in non-technical terms what the caregivers and I should do to build on what he does.

As it turns out, we found a way to keep Kate’s feet on her footrest as well as a physical therapist who is helping us acquire a reasonable set of expectations for someone in her physical condition. She is quite strong, but she is not going to walk again, and we’re not likely to need much PT. Although I had held this assumption previously, it was good to hear it from an expert. He also offers good tips for everyday care. Now, we’re ready to face whatever new issues arise, and I know they will.

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Benefits of Living in a Life Plan Community

Kate and I continue to get along well in our new home in a local retirement community. My motivation for moving was to provide backup support for Kate should something unforeseen happen to me. Having made the down payment two years ago this past May, we were considered to be part of the community with access to virtually all the benefits available to those who were already living here. It wasn’t until a short time before our move that I felt the need to take advantage of anything. That’s when we became eligible for the COVID vaccination. I jumped on that but wasn’t able to get Kate out at the time.

When we moved in, they were no longer giving vaccinations, but I spoke with one of the staff who coordinates resident services about arranging for someone to come to our apartment. She said she would work on that, and shortly thereafter, a team from the county hospital came to us for Kate’s first and second doses.

The longer we are here the more benefits I discover and take advantage of. Many of them are little things that make life a little easier, but some are more significant. This past week involved the latter. The first was a switch in Kate’s primary care physician.

For about fifteen years, she has been patient at the geriatric practice where my mother and father as well as her mother were patients. We have always been pleased with all of the physicians who practiced there, but getting Kate to the doctor now requires our arranging for a wheelchair van or ambulance for her transportation. A year ago, however, the doctor who started the practice and was on the faculty of the medical school opened his own private practice at our retirement community. Kate’s doctor who has worked with him for years and is also with the medical school suggested that it might be best for her to become a patient at his practice.

I thought about that for several months. Two weeks ago, I made the arrangements for the transfer. She had her first appointment Tuesday. He and his nurse spent an hour with us at our apartment where we spent most of our time talking about Kate’s medical history, especially her Alzheimer’s and medications and made the appointment for a second visit, also at our apartment, a month from now. What a wonderful benefit. She has a physician I have known and respected for more than twenty years, and his office is in the building next door. We are connected by a hallway so that we don’t even have to go outside when we visit him, and he doesn’t mind coming to our apartment when that is more convenient.

Kate was the recipient of another health-related benefit this week. Last weekend. a resident in one of the cottages tested positive for COVID. The management responded with a number of changes that involve our wearing masks, cancelling social activities and asking us to minimize our social contact for the next couple of weeks. They also required everyone to be tested Tuesday and Thursday.

I was tested the first day along with 251 others. No one tested positive. I was concerned about Kate’s taking the test that requires a swab for the nose. Although it is not at all painful, I thought she might be frightened by it. I spoke with the person who had arranged her vaccination. She immediately said she would be happy to come to our apartment for the test. We set that up for late afternoon the day before yesterday.

When she and her assistant arrived, I introduced them to Kate and explained what we were going to do. I did so in the calmest non-threatening tone of voice possible. She was quite accepting until I tried to use the swab. The moment the swab touched her nose she pulled away and was adamant about not wanting us to do it. We tried several times over the next five minutes and finally agreed that we should approach it a different way.

I told her I had a prescription of Seroquel that I had used only a few times before and that it makes her sleepy. I added that I felt most comfortable giving it to her before she went to bed. We scheduled it for the following day. I had only used the Seroquel three other times. It knocks her out, so I don’t like to use it; however, it works well for something like this. I held her hands and let the nurse do the swabbing. Kate awoke immediately, but the nurse was able to finish quickly. We had the results (negative) before she left the apartment.

Living in a life plan community (often called a continuing care retirement community) may not be for everyone, but it has certainly made life easier for us. I’m glad we’re here.

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A Great Day for the Caregiver

Last week, I spoke to a group at our church about living with Alzheimer’s. During the Q&A, someone mentioned the stress experienced by caregivers and asked how I was dealing with that. As I said to him, “That’s a good question and one that I’ve tried to address since Kate’s diagnosis.” My thoughts about care for the caregiver is rooted in watching my father as he cared for my mother who had dementia. Except for the things I did to support him, the only help he sought out was a daycare center for my mother 4 hours every Wednesday so that he could go to Kiwanis and the grocery store. He was always in good spirits, but the stress took its toll on him. I vowed not to let that happen to me. I can’t say that I have found a way to eliminate stress, but I have been able to minimize it.

Since our move in April, life has become much easier for me. Supervising only three caregivers is much better than the 6-9 we had before the move. That has meant more routine in our lives. As expected, the convenience of meals on the premises has been a major benefit. Little things like being able to stroll down the hallway to a café where Kate can get an ice cream or a milk shake adds pleasant moments of relaxation. On top of that, I am enjoying the social interaction with other residents and staff that occurs throughout the day.

I also get away from the grounds several times a week. I attend Rotary every Monday and have lunch at two of my favorite restaurants on Wednesday and Sunday. Of course, there are also trips to the grocery store and pharmacy.

This past Wednesday was an especially nice day. I had lunch at Carla’s where I had an arugula and goat cheese salad with cherry tomatoes and pecans accompanied by a side of smoked brisket (the best I have had outside of Texas). The meals in our retirement community are quite good, but they don’t compare to the ones I get at Carla’s or Andriana’s.

Apart from the meal, I had conversations with two of the staff I have known for quite a while. One is a server who is moving to Nashville. Her boyfriend just graduated and is moving there to look for a job. She is going with him to further her education to become a physical therapist. She was excited about the move, and I was excited for her. It reminded me of the early days of our own marriage.

The conversation was with the shift manager. He is from Romania and has been in the US about five years. He is married to a Puerto Rican who is in the Air Force. Earlier this year, he became a US citizen, and was very excited about that. Now, he is excited by the news that his wife’s next assignment is in Naples, Italy. That will put them within an hour by plane to his family’s home. That will make it much easier and less expensive for his parents to visit him and his wife and daughter. When his wife finishes this assignment, she will have only three years until she can retire. Upon retirement, they plan to return to the US. I found both of these conversations to be uplifting and was happy for them.

Wednesday is also “Spa Day” for Kate. The caregiver bathes her, shampoos her hair, applies lotion to her body, and does her nails. When I got back to the apartment, I was pleased to see Kate with eyes closed relaxing in her recliner while the caregiver filed her nails. Until two years ago, I had been taking her to have her nails done once or twice a month. As her Alzheimer’s progressed, she became somewhat frightened, and I stopped. This particular caregiver has been doing her nails since she came to us in December or January. It does my heart good to see Kate enjoy herself so much.

To top it off, we made our trip down the hall for ice cream. I didn’t need anything more to keep my spirits up.

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“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.

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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.

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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.

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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.

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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.

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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.