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.