Kate’s Last Pedicure

Kate has always enjoyed manicures and pedicures, and I have periodically taken her for both since her diagnosis. Now, however, she no long remembers the procedures and the little things she is supposed to do. The last couple of times I have stayed with her the whole time just in case she needed my help. It has worked out, but her insecurity on the previous visit made me more cautious. I made an appointment yesterday afternoon.

When we entered the salon, a different person was at the reception desk, so I pulled out one of my Alzheimer’s cards and slipped it to her. Although that was in advance of any problems, it turned out to be a good thing. I walked her back to the chair to help her get seated. Existing customers were in the seats on either side of her. It turned out getting in the chair was an ordeal. That was partially due to the fact that she had to go up a high step to get into it. The other part involves her eyesight and difficulty understanding directions. She apparently couldn’t see or didn’t recognize the chair itself. Despite my efforts to direct her by putting my hand on the seat of the chair and trying to get her to face it, she struggled to understand what we were asking. I should add that the woman who was to give her the pedicure and the woman sitting in the chair to her right were also trying to instruct and guide her. Although we were all trying to help, I suspect we added a measure of confusion. During this process, Kate let out a scream that was easily heard throughout the salon. All eyes were on her. That was just the beginning.

As luck would have it, the woman next to her was a retired nurse and very understanding. She introduced herself and explained the procedures Kate experienced. That began with the warm water running into the tub at her feet. She was frightened at first. The nurse had a very soothing voice that put Kate at ease at least as much as she could in what had to be a strange situation for her. I thought that at some point she would have some sense of familiarity with the process, but that never happened.

I brought Kate’s iPad to her chair; however, I put it down on a step to her side in our effort to get her seated. She didn’t realize it was there. It wasn’t long before she wanted it. The nurse gave her a magazine. I realized she was looking for her iPad and went over and gave it to her. I think the nurse was surprised that she was able to work an iPad. I wasn’t in a position to explain that she has only minimal capability to work her puzzles and that, with some difficulty. It didn’t take long for her to see that for herself. Kate finished one puzzle but didn’t know how to get to the next one. As usual, she made her way into the store. The nurse looked over at me and said she didn’t know how to help her. I intervened and showed her.

We had been there quite a while, when I noticed that Kate and the nurse were talking. The nurse mouthed that she was looking for her “mother.” I am sure she was looking for me and just said mother. She frequently mixes gender and relationships. The nurse showed Kate where I was sitting. She waved to me, and I waved back. A little later, the nurse called me again. This time Kate had taken her feet out of the tub of water. The nurse explained that the water was to soften the skin on the bottom of her feet so that they could smooth it out. Kate didn’t understand. I went to her and explained that she needed to put her feet back in the tub. She did, but it was only a minute or two before the attendant began her work.

That was when the “fun” started. Not knowing what was to come, Kate screamed again and responded audibly while the attendant rubbed the bottom of her heal. I went back to her and helped to calm her and then went back to my seat. In a few minutes, it was time for the other foot. Once again, she was surprised by the experience. I stayed with her for a while. When she was calm again, I took my seat in the waiting area that was about twenty feet across the room and clearly visible to Kate who waved to me periodically.

Finally, it was time to leave. It turned out that getting out of the chair and descending the step was a bigger problem than getting in. Anticipating that she would need my help, I was in place when she was ready. The first problem was standing up from a sitting position. That has become increasingly difficult at home and restaurants. This was a little more frightening for her because the chair was elevated so far off the floor. Kate is very insecure about going down curbs and stairs. To her this must have seemed like jumping off a cliff. All this was accompanied by a variety of audible sounds. As with other moments during the process, all eyes were on Kate.

As we walked out the door, Kate said, “Let’s get out of here.” I think most of the other people in the salon thought of their personal experience as a treat. Far from it for Kate. In the car, I apologized for putting her in this situation and mentioned that we might go back for a manicure sometime. She quickly said, “I don’t ever want to go back there.”

The personnel and the nurse next to Kate were very understanding. I don’t know how the others took it. I only gave my Alzheimer’s cards to the receptionist and the nurse. In my haste to leave, I didn’t think to give one to the woman on the other side of Kate and ask her to pass it around. I wish that I had because I did notice soft laughter among the group. I admit that from their vantage point, it was funny, but it was a sad moment for me. It’s been almost two months since I had to discontinue her bi-weekly massages. Now the mani-pedis. I wonder what is next.

Thoughts about Anticipatory Grief

Just about everyone has some awareness of grief that occurs after death of a family member or friend. Much has been written about it, but most of us don’t think of anticipatory grief that occurs before death. There seems to be agreement that not everyone experiences this kind of grief, and I imagine that is a difficult issue to measure. It’s something many people have never thought about, and, thus, are not likely to recognize or say they are experiencing or have experienced it.

As you might expect, I am in touch with a lot of caregivers of people with dementia. Anticipatory grief is a topic that comes up periodically. It is easy to see how the concept would be relevant for this group because of the lengthy span of time between diagnosis and death. Many people view the diagnosis as a “death sentence.” Since there is no current cure for the disease, I understand this thinking. My personal preference, however, has been to focus on the positive side and concentrate on the value of the remaining time that Kate and I have to enjoy life and each other. Having said that, I must admit that the diagnosis did serve as a wake-up call that life does not go on forever. We know this anyway, but the diagnosis of dementia is usually a significant signal that death is sooner than we had expected.

Lynne Eldridge, M.D. (https://www.verywellhealth.com/understanding-anticipatory-grief-and-symptoms-2248855) talks about the nature of anticipatory grief, and, like most authorities, is careful to acknowledge that “everyone grieves differently.” She suggests that such grief can be like a roller coaster ride with all its ups and downs. It’s not constant. With that in mind, she identifies the following symptoms one might experience.

  • Sadness and tearfulness
  • Fear of death itself and the changes that will accompany it
  • Irritability and anger
  • Loneliness
  • A desire to talk
  • Anxiety,
  • Guilt
  • Intense concern for the person dying
  • Rehearsal of the death – visualizing what your life will be like
  • Physical problems – sleep and memory, and
  • Fear of loss, compassion, and concern among children facing death of a parent

Recently, I have wondered if I’m experiencing this grief and, if not, if and when will it occur. This has led me to think about the symptoms listed above as well as the degree to which I experience them. Here are my thoughts.

I quickly eliminated the following signs: irritability and anger, loneliness, desire to talk, and guilt. I may a bit more irritable because I often feel more rushed than usual. If so, it is minimal, and I don’t feel lonely or guilty at all. I do like to talk, but that was true long before Kate was diagnosed.

I experience each of the remaining symptoms to a greater or lesser degree. Here is how I would rank them in terms of their intensity.

I often feel sadness and occasionally experience tearfulness, especially at services for friends who have died. There have also been a number of moments when I choked up while talking with someone about Kate. This has been true since her diagnosis. As her Alzheimer’s has progressed, I have felt sadness each time we did something that was or I thought would be the last time. That includes our international travel as well as trips to New York City, Chautauqua, and our children’s homes. In addition, my eyes often fill with tears during my happy/sad moments with Kate. One that comes to mind is when she asked, “Would you consider marrying me?” during a conversation at a local restaurant about a year ago, but there have been many others.

The sadness I am talking about is not lasting. It is momentary, but I have sensed a greater degree of sadness recently that relates directly to Kate’s decline over the past few weeks (months?). I have experienced hospice with three of our parents, and my current feelings are more like those except for the clearer reality of impending death associated with their situations. With Kate, I also continue to have uplifting experiences that prevent the sadness from being a problem. Nonetheless, there is a real difference in the way I feel now. I think that relates to some of the other symptoms listed above.

I don’t think the word “fear” best describes my feelings, but I don’t want to face what lies ahead for us. When the time comes, I am sure I will handle the situation as I have done in the past. I think the word “anxiety” is a better word than “fear” to describe my feelings. This seems like a very natural response for a spouse whose loved one is entering this stage.

I often think about life after Kate’s passing. I don’t know how someone in my position could avoid that. This will be the most dramatic change of my life since we married, and it’s a permanent one. At the same time, I know many people, including my father, who adapted well after the loss of a spouse. I believe that I, too, will adapt.

I wake up more often at night and have difficulty getting back to sleep. I also sense that my memory has been affected by the demands of caregiving. To date, neither of these has been a serious problem. I’m not sure what to expect in the future.

When I think of each one of these symptoms, I would say none comes close to the feeling of sadness in terms of intensity. There is no denying, however, that I experience anticipatory grief. The question is “How will I handle it?” I am optimistic, but I also believe it won’t be easy.

Creating Happy Moments

As I have mentioned before, I have two primary goals in caring for Kate: To keep her safe and to keep her happy. For the most part neither of those goals has been especially challenging. I am, however, finding it more difficult to keep her happy. I think that is only natural with the progression of Alzheimer’s. In the early stages, Kate could easily entertain herself. Apart from the routine activities in which we were involved together or those with her friends, she had three different things she did on her own. The one that occupied the largest portion of her time was her yard. Weather permitting, she sometimes spent as long as five or six hours in a day tending to her plants and shrubs. As the shrubbery began to die from her excessive pruning (“pulling leaves”), she gave up working in the yard two or three ago.

She also edited photos on her computer for what she intended to be a photo book of our family. Although she wanted to include a good bit of text to provide a fuller account of our lives, she never wrote anything. Instead, she would often say to me when we were talking about our lives together, “Remember that. That goes in the book.” Though less frequent now, she still says that occasionally. Originally, she spent as much or more time on the computer as she did in the yard, but it became increasingly difficult for her to operate. That dropped out of her life about four or five years ago.

That left her with her iPad on which she works jigsaw puzzles. In recent years, she has spent up to seven or eight hours a day on that. Now she is encountering much more difficulty. I fear that ability will soon be gone. That requires me to spend more time entertaining her. Yesterday was a good example.

When she woke up, she was not as warm and friendly as she sometimes is. She joked with me, but it grew out of a feeling I had rushed heer and took on a more serious, than humorous, tone. I often joke with her, but I back off in situations like that. My joking tends to exacerbate the problem. Knowing that we would soon leave for lunch, I didn’t say much. I simply responded to her needs in getting dressed. I knew I could depend on the car ride of about twenty minutes and could play music all the way to lunch.  We didn’t talk much at all in the car. When we did, it involved references to the music. Once we were at the restaurant, she was fine.

When we returned home, she wanted to work on her iPad. I joined her in the family room and put on some music she would enjoy. After an hour or so, she asked for my help. As soon as I started to help, it was clear that she was more confused than usual. It wasn’t that she had pressed the wrong button. Somehow she thought she was supposed to spell someone’s name and couldn’t do it because there were only scattered puzzle pieces on the screen. She didn’t see any letters. I tried to explain, but she didn’t understand. She kept talking as though there was another person in the house (a woman). She thought her name was Carol. When I couldn’t help, I suggested that she take a break from her puzzles and look at one of her photo albums. It wasn’t long before she was engaged with the photos in the Big Sister album.

We did that for a little while, but I was on my knees beside her chair and got tired. I suggested we move to the sofa where I could sit next to her. She enjoys looking at her albums by herself, but she seems to appreciate them more when I do it with her. That is because I am able to identify all the people and situations. I fill in lots of information she couldn’t remember on her own. It was a happy moment for both of us, and we went through the entire 140 pages.

We had a similar experience after dinner. On several occasions lately, I have played the soundtrack from the movie Annie. It’s an album that we both enjoy. That prompted me to look for the movie on YouTube. I found it, and we watched a portion of it a couple of nights ago. Last night, I turned it on again. Kate was interested but started working puzzles on her iPad. It wasn’t long before she needed my help. She was having a similar problem to the one she had earlier in the afternoon. She didn’t now what to do with the scattered puzzle pieces. When I pulled up a new puzzle, she was worried that she might “mess things up.” I felt sad for her since she obviously recognized that she does mess things up. I assured her she wouldn’t create a problem but decided once again to take a break from the iPad and look at another photo album.

The one I chose was a book focusing on her father’s family. It is a book that we have looked at many times and contains information starting with her grandparents. Because she was already confused, I decided not to read everything. I simply gave her an abbreviated version of the text. I told her about her grandparents moving to Texas with their families, getting married, having children and ultimately moving to Fort Worth where Kate was born. She hadn’t remembered a thing about this album. She thanked me profusely for telling her and said she had never known these things before. As we went through the album, she told me she wanted me to remember that “for the book.” She looked at me very seriously and said, “I want you to help me with this. I want it to be very good. Don’t let me mess it up.” I told her I would, but, of course, I know that she will never be able to create the book she has wanted to make for so long. My heart went out to her when she expressed her fear that she might mess up the book if she did it on her own. Even at this late stage in her Alzheimer’s, she knows she has a problem.

The video had been playing all the time we were looking at the pictures. Although she was excited about looking at more photos, she was beginning to tire. Then one of the songs in Annie caught her attention. We both started watching, and I began to give her a commentary on what we were seeing. That seemed to help her understand what was going on, and she enjoyed the rest of the movie.

Thus, we ended the day on a happy note. It was a day that was punctuated by ups and downs in Kate’s mood, but each time I was able to lift her up with the aid of music, photos, and a video. It reminds me again of how fortunate Kate and I are. I think about the people living with Alzheimer’s who aren’t entertained all day, who have caregivers that have other responsibilities that prevent the kind of continuous care that Kate receives. I also think about the people with dementia who don’t respond to such entertainment in the same way that Kate does. It has to be so hard for their caregivers.