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Celebrating Anniversaries

Today is a special day for us. Fifty-six years ago, Kate and I had our first date to a performance of Handel’s Messiah at TCU. Fifty-five years ago, we became officially engaged. We have never formally celebrated these events, but I think we have only forgotten them on one or two occasions.

Kate ceased to remember any special dates several years ago. That includes birthdays, our wedding anniversary, all of the important dates of our children and grandchildren, as well as holidays. Even though I have mentioned today’s anniversaries to her a number of times over the past few days including several times today, she doesn’t remember. It is amazing how we have adapted. The first time or two she forgot my birthday or our wedding anniversary it made me sad. Now I find satisfaction knowing that she is happy and that we are still able to do so many things together. Part of the reason I feel the Christmas season is so special is because of these events. I let the moments we are enjoying now and the memories of the past rekindle the feelings we had at that time and feel grateful.

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Conversations

If you are caregiver for someone with dementia, you may relate to an experience Kate and I had last night. From the time of her diagnosis, we have spoken very little about her Alzheimer’s. Most of that came in the first year. Since that time most of what has been said is Kate’s saying that she thinks she is getting along pretty well and my agreeing.

In addition, conversation itself has been different. In the early years, we took time for conversation over many other things. We started regularly sitting down and talking on the patio or in our family room over a glass of wine. The conversations themselves often gravitated to the many memories of our lives together. Somewhere along the way we talked specifically about how fortunate we have been.

Over time, Kate’s memory has waned. That makes conversation for her more difficult. Most of our time together is spent in silence. I have to say this has been something of a challenge for me. I grew up with a mother and father who talked continuously. I am a big talker myself. It actually feels awkward for me to sit across the table from her at a restaurant in silence. Kate is gifted when it comes to ordinary social conversation but is not as driven to talk as I am. During our marriage, I have learned to appreciate her need for private time. Thus, I haven’t been surprised that with her Alzheimer’s, she often tells me not to talk or to “tell me about it tomorrow.” That is my intro to last night.

After we returned home from dinner, Kate dressed for bed and worked puzzles on her iPad. I turned on the TV to one of the football games. About an hour later, Kate said she was going to call it a night. She closed her iPad and went to the bathroom. In a few minutes, I heard her saying, “Oh . . . oh . . . oh . . .” I have never understood this, but it is something she says periodically. When I ask, as I did again last night, she says that nothing is wrong.

As she left the bathroom, she stopped in front of me and told me she loved me and how much she appreciated everything I do for her. Then she got into bed. As she lay there, I could hear her whimpering. I went to her and sat by her on the edge of the bed. I asked her if she were sure she was all right. Again, she said she was fine. I left her a moment and went to the bathroom where I noticed that she had hung her underwear on a towel to dry. I assumed she had had an accident. I went back to her and tried to comfort her. She couldn’t tell me anything except to say she had been reminiscing. I turned off the TV, turned out the lights, and got into bed with her. For the next 30-45 minutes, we talked about our lives together, our honeymoon, the places we had lived, our children and grandchildren, and our travels. It was a very special moment. I hadn’t heard her talk that much in a very long time. As we talked, she calmed down, and we fell asleep.

I’ll never be sure how to explain what happened to bring this on. I suspect, however, it is one of those times when she realizes how much she is declining and losing control. My own feelings were very mixed. I loved being able to have such an easy flowing conversation with her. On the other hand, I can’t help feeling sad to think of her recognition of her current state.

Today should be another bright spot in our Christmas season. We are driving to Asheville where we are going to see the musical Annie. We’ll have a couple of nice meals and enjoy another stay at the Haywood Park Hotel.

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Everyday Experiences

After we walked out of Applebee’s where we had lunch today, Kate asked, “What is this place?” I told her, and she said, “I knew that. . . . It just wouldn’t come to me.” Then she pointed to the sign on the building. I said, “I have that same experience sometimes. It’s funny how that happens.”

As we turned onto our street, she asked if she could work in the yard. I told her, “That would be fine. I know you will enjoy that.” She gave me a surprised look and asked, “Clippers?” Again, I told her yes. She gave me another look of surprise. I smiled at her and said, “I’m just big-hearted today.” She said, “Well, that is true.”

These are just little incidents, but I mention them because I think they typify the way we relate to each other. I do my best to keep our conversation light-hearted so as not to hurt her or make her feel bad in any way. I can’t really be sure if it works. I do know that this kind of experience is much more common than moments of irritation on the part of either one of us.

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An Experience With Ladies’ Intimate Apparel

Kate and I are now at Barnes & Noble where we are awaiting a call from Jan and Scott Greeley, our long-time friends who live in Nashville. They are in town for the memorial service for a friend. We are going to meet them for lunch after the service. Since my last post, we dropped by the bank to get some cash and came over to Belk’s to buy Kate a new bra. For almost the entire time since her diagnosis, we have faced a number of issues involving clothing. Some of those have been partially resolved, but there are always new ones. Here is one that occurred about 45 minutes ago.

I should start by saying that my knowledge of women’s apparel has never been good. That is especially true when it comes to bras. Today was not my first experience shopping for them, but it was the most challenging one. A writer for a situation comedy could have a field day describing what transpired. It could make for quite a funny episode. I, on the other hand, didn’t take it that way at all. For me, it represents one more sign of how far Kate is on this journey. Thus, I see more sadness than humor.

Today, perhaps all week, Belk is having a sale on all their bras. They are fully stocked for the occasion. In some ways that might make it a good opportunity to make a purchase. Instead, I found it overwhelming. Despite the store’s best efforts to have things in order, I could not identify a consistent pattern to the way they were arranged. I know it must have been overwhelming for Kate. She didn’t even make an effort to look for anything. She trusted and depended on me for that.

Finally, I picked out what I thought was the correct size. I have done this at least twice before, once at Belk’s and once through Amazon. It turns out that the size I bought last time must not be the right one now. Kate tried on at least five different ones without finding the right fit. It took her quite a while to try them on. When she came out after trying the first two, she couldn’t tell me much except “they didn’t fit.” Then I went back for a couple more with the same result. Finally, I suggested that I go into the fitting room with her. She thought that was a good thing. After looking at the way this fit, I felt it was still too tight. I suggested we try to get something through Amazon. It would be easier than picking through all the items hanging on the racks.

I should also mention that each time Kate came out of the fitting room she had put on the two tops she was wearing. The problem was that she kept putting them on backwards. One time she left one of them in the fitting room. She is getting so very confused, and it is very sad to see. These are the kinds of things that make me pessimistic about the upcoming year.

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Expressing Gratitude

One of the ways in which I, as a caregiver, have been fortunate throughout my care for Kate is her own expressions of gratitude. I know that many others who care for a person with dementia are not on the receiving of these acts of appreciation. I feel for them. It is enough to have one’s life organized around the care for another person. To do so without any sign gratitude would be unbearable. When you love someone and that person acknowledges her gratitude, caregiving is much easier.

It is true that Kate is more irritable than she was before AD. Those moments are usually rather fleeting. On the other hand, her expression of appreciation has punctuated the entire journey. It doesn’t occur all the time but often enough that it tells me she knows how dependent on me she has become. These expressions come in very small packages. Here are two recent examples.

The other day in a restaurant without anything to prompt her, she said, “Thank you for everything you do for me.” I don’t know why she said it at that time, but I interpreted it as her recognition that I do a lot for her. Another occurred last night. As we walked to the car after dinner, I walked ahead of her and opened the car door for her. She said, “You didn’t have to do that.” I said, “I know I didn’t. I just wanted to. I want to take care of you.” She responded, “You do. You take very good care of me.”

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Another Mood Change

I have mentioned before that Kate is particularly sensitive to lots of things like temperature, noise, music, etc. It seems to me that this sensitivity is even more noticeable now than in the past. It doesn’t take much to startle her. She often responds audibly to someone’s sneezing or coughing. I have to believe the people around us sometimes hear her reaction. She is frequently hot in the house and likes to have the overhead fans turned on regardless of the temperature. I compensate by wearing a sweater.

This morning she wasn’t in a particularly good mood when we went to Panera. It wasn’t long before she complained about a particular rendition of a favorite Christmas carol that was playing. After forty-five minutes, she asked when we could go home. She said it was too hot there. We left to come home. Since it was a little before 10:00 and too cold to work in the yard, I told her I would build a fire and put on some Christmas music. She seemed to like the idea but didn’t express great enthusiasm.

When we got home, and I had the fire going, I turned on the music, Handel’s Messiah. I had the volume too loud for her. It startled her. I turned it down to a more acceptable level. She came into the room and has been working on her iPad for almost an hour. She has enjoyed both the fire and the music. We are back on track now. I think we have averted any further problems, at least for a while. We will go to lunch in another thirty minutes or so. This afternoon we are going to the Bijou where they are putting on a production of Miracle on 34th Street. I expect that will provide another good experience.

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Christmas Music And A Fire

This is a cold, rainy day with the prospect of some snow. We made our usual visit to Panera and Kate seemed to be having a good day. While we were at lunch, I checked something on my phone. Kate asked what I was doing. I told her. Then she said, “Why don’t I have one.” I hesitated a moment trying to think of just the right thing to say. I said, “You used to have one. We may have an old one at the house.” She gave me a disgusted look and said something about having to depend on me to drive her where she wanted to go. I realized she was talking about a car and not a phone. Then she said something that indicated she didn’t want to talk about it any further. She looked very depressed.

She was very quiet for the balance of the meal. I began to think of the afternoon and her not being able to work outside. That led me to check the Live in HD at The Met performance. We have frequently attended those in the past but have not gone this season. I saw that Hansel and Gretel was scheduled. I asked if she wanted to try it. She said she did. We continued with our meal. At one point she asked, “What am I going to do this afternoon?” I reminded her about the opera, and she accepted that.

The theater that usually has the operas was diagonally across the street from the restaurant. We walked over after lunch to discover that they were not showing the one today. I hope that doesn’t mean they have discontinued them. That left us with another option, to go home and sit by the fire. Both of us thought that sounded like a good idea.

On the way home I played a recording of Fiddler on the Roof. When Kate heard “If I Were a Rich Man,” she chuckled. That completely changed her mood. She continued to chuckle throughout the song. Once we were home, I got the fire going and turned on some Christmas music. She had her iPad in her lap, but she was so taken by the music and the fire that she put it down. At one point, I looked over at her and saw that she had her eyes closed and a smile on her face. She was happy. I must admit that brought a tear to my eyes. I love seeing her enjoy herself.

After a while, she got up and left the room. She’s been gone about 45 minutes. I walked back to the bedroom. She was in bed with the cover over her.

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More Little Things

I continue to notice Kate’s checking with me to see if it is all right for her to do things that shouldn’t require my permission. Yesterday, we were leaving for dinner, and she asked if it were all right that she had left the drapery in our bedroom open slightly. She also asked about turning out the light in the laundry room and locking the door to the garage. Last night she put on her night gown, something she doesn’t always do without my prompting. This time she had also put on a top that she had worn all day yesterday. When she got close to the bed, she pointed to the bed and gave me the look that means she is asking a question. I told her it would be fine to get in bed, and she did.

My interpretation of these things is that she feels less and less sure that what she is doing is right. I also recognize my own OCD tendencies, and she definitely does. It appears that she is working harder to do everything the right way, but is also encountering problems at every turn. A moment ago, she asked me if I would refill her cup with iced tea. (We are at Panera.) When I brought it back, she was about to put the lid on upside down. Before she realized it, I told her. That irritated her because she had just realized that herself. Earlier this morning, I noticed that she had put her top on inside out. I mentioned that. She was glad that I did. When she took it off, it was all twisted. I started to help her. She didn’t want my help. In a minute, she called for me. She hadn’t been able to straighten it out. These kinds of things happen all the time. I know it must be discouraging to her. So being aware that she often makes mistakes and knowing that I am a bit particular, the safe way to adapt is probably to seek permission in advance. It seems to me, however, that the things for which she seeks permission are unnecessary. I wish I could help her overcome this feeling, but it is probably inevitable.

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Losing Another Friend With Dementia

Over the course of the past few years, I have connected with several people whose spouses have had dementia. One of those was my former dentist whose wife was in the last stages of the illness when we first got together. He had in-home care for her round the clock. About a year after our first contact, he died of cancer. She died earlier this year following a year in a memory unit of a continuing care community.

Another man was a neighbor whose wife was between the middle and later stages. He cared for her at home until she experienced serious problems with anger. Then he had to put her in a memory care unit of a local facility. She died over a year ago.

One other person was someone with whom I had served as a volunteer in three different not-for-profit organizations. After his retirement, he and his wife moved to the coast of South Carolina. His wife had also been an acquaintance of Kate’s. Her dementia had already been diagnosed at the time of their move. I last saw them together in August 2016. She seemed to be getting along pretty well although I knew from her husband that she had had a variety of problems, both health and anger. A month after I saw them, she started a downward spiral that ended in early January. He was able to keep her at home for all but a period of a month or six weeks that occurred about a year before she died. He had help from his daughter and an agency that provided in-home care during the day.

Yesterday morning, I received a text from Nancy Hardwick telling me that Charlie, a former roommate at TCU, had passed away early that morning. Charlie had enjoyed attending an adult day care center for over a year. He died peacefully at home. I don’t believe Nancy had any help until hospice was brought in about a week ago.

That leaves me with only two other acquaintances in my shoes. One is a former member of my Rotary club and a neighbor, We periodically exchange email messages but haven’t gotten together because he can’t get away from the house. His wife won’t accept a caregiver, and he doesn’t want to leave her alone. I need to give him a call. He might like to have a little contact. I sense that he is substantially more isolated than I am.

The other is a member of our church. Kate and I see him and his wife at one of the restaurants we frequent regularly. I have talked with him two or three times on the phone. For a long time, he took his wife to work with him. He owns a large company and is retired but goes into the office daily. He has brought in a sitter for his wife within the last six months or so. I have the impression that he doesn’t feel the need or desire to establish any kind of regular communication. His wife is a little further along that Kate. The interesting thing to me is that our situations are very similar. His experience with her is very much like that of Kate’s and mine.

The deaths of these four people sensitized me to the fact that we are one day going to face this same thing. Even though Kate lives with little or no memory, I still feel her passing is years away. I read some caregiver’s forum messages that welcome death. At this point, we still enjoy life. I wouldn’t want it to end now. There is simply too much to live for.

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A Few Little Things; Do They Mean A Lot?

As a caregiver, I find myself trying to be attentive to changes in Kate’s behavior. It is often challenging to determine if the things I notice are a function of her AD or just part of the normal variation like all of us experience. Here are a few things I have noticed recently.

She is working outside for shorter periods of time than in the past. This could be related to the cooler weather although it is not as cool as other times when she has worked through very cold and very hot temperatures. It also could be related to the fact that she has pulled so many leaves off the shrubs that there isn’t much to pull. I have even heard her comment that she doesn’t have much but she wants to do a little bit.

She is also taking fewer showers. Part of this also results from the cooler weather. When she comes inside, she isn’t sweaty and in need of a shower in the way she is in the summer. On the other hand, she has been taking a shower in the morning and often another before we go out to eat. Now she is limiting that to just the morning, and sometimes she skips that. On a few occasions, she has come in from outside and said that she is going to take a shower and doesn’t.

She seems to be narrowing the choice of clothing she wears and frequently wears the same thing two days in a row and sometimes three days. I think this has developed because she has started undressing in our bedroom rather than in her room where she keeps all of her clothes. When she takes her clothes off, she throws them on the chair beside her bed or on the floor beside the bed. When she gets up in the morning, they are the first things she sees. She may just be taking the easy way out.

Along with these changes is something that I have mentioned a number of times over the past few weeks. She is significantly more cooperative. A good example of this occurred this morning when we returned from breakfast with a small group of people who work out at the Y.

She asked, “What can I do or not do now?” This occurred shortly after we decided to go to Panera. I said, “I thought we were going to Panera.” Then she said, “I could take just a little time to work outside.” I told her that would be fine. As she usually does, she expressed surprise that I was so agreeable to doing this. Then she said, “I’m going to use the clippers.” I reminded her that they were missing.

I went inside to take care of a few things while she worked outside. After 30-40 minutes I went outside to tell her that I was ready to go to Panera. That is when I saw that she was lying down in the flower bed pulling weeds. She was wearing a new coat that I had bought her about two weeks ago. I said, “Oh, you’re wearing your new coat.” She said, “It’s all right. I haven’t hurt it.” I started to respond to her but decided that wouldn’t help. In the past, this experience might have led to more irritation on her part. This time she simply got up and walked toward me. She asked, “Did I do something wrong?” I assured her that she hadn’t. We have a lot of moments like this. In the past she would have expressed stronger resentment of what she considers my pickiness. Maybe we are both learning how to handle things like this.

Are any or all of these things a sign of a more fundamental change? Does it relate to her AD? I still can’t answer these questions.