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A First

Kate and I were to attend a program of our music club this evening. Although its members are involved in a wide variety of musical genres, there is a heavy orientation toward classical music that is reflected in our programs. Kate, whose taste in music is more in the direction of popular music and popular classics has never been as taken with the club as I have. For that reason, she hasn’t attended a meeting in over a year. Last year, I left her at home by herself. I haven’t felt comfortable doing that this year. Since the Christmas program is always a choral group that sings a variety of Christmas music much of which is well-known, I thought I might take her to this one. I am the treasurer, and I needed to deliver a couple of checks as well.

Suspecting that Kate would not be excited about going with me, I decided to test the water by telling her of the meeting several times over the past three days. Each time she had forgotten, and each time she groaned. Then I told her that I thought she would like the program and that we would not stay long and come home right after the program ended instead of staying for the reception afterwards. Each time she agreed to go.

Late this afternoon, I mentioned it twice, once at dinner and once again after we got home. Once again she was not happy about it but said she would go. I picked out her clothes and laid them out on her bed. She was happy about that. I left her to get dressed while I wrote out a couple of checks. About ten minutes later, she came out in a night gown. I said, “You’re in your night gown?” She looked at me with great surprise. I reminded her of the meeting. She had completely forgotten. I brought her clothes back to her. Then she said she didn’t want to go and wanted me to go without her. I told her I didn’t feel comfortable leaving her alone. I probably could have coaxed her into going. I didn’t want to do that. I told her we would stay home but we would have to take my checks to someone else to deliver to the correct parties, and that is what we did.

On a number of occasions Kate has not wanted to go somewhere, and I have made the same decision. The difference tonight was that I had a responsibility to deliver the checks and had told several people that we would be there. In addition, we are supposed to let the secretary know if we cannot attend. The assumption is that the RSVP would come earlier than the time we now had before the meeting.

There is really no great loss in our not having gone, but it was a program I believe Kate would have enjoyed. I know that I would have. I also felt that this was likely to be the last time we attended as a couple.

It is also an indicator of Kate’s continuing downward spiral. In the future, I will need to arrange for a sitter the evenings the club meets. That is only four times a year, only two of which remain in this year. At times like these, I try to be thankful for how slowly she has progressed to this point. I never thought when she was diagnosed seven years ago that I would even have considered her going as a possibility. I am both sad and grateful.

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More On Kate And The Sitter

When I arrived home this afternoon after going to Rotary, the Y, and Whole Foods, I found Kate and the sitter in what we used to call Kate’s office. I now just refer to it as Kate’s room. She still has an office chair, a desk and a printer in there, but she hasn’t used them in several years. She keeps most of her clothes in the closet and uses it as a dressing room as well as retreat when she is tired of being in our bedroom or the family room.

Kate was sitting on the bed, back to the headboard and legs stretched out in front of her, working jigsaw puzzles on her iPad. Anita was sitting in a chair watching something on the TV. I asked if they had been back to Panera. Anita said they had. That would have been Kate’s third time today. I took her for her breakfast muffin. Then I took her there for lunch before I going to Rotary. As Anita was leaving, I thanked her. Then Kate said, “I thank you too. I felt better having you with me.”

I had wondered if the sitter provided Kate with a sense of security. Her comment suggests that she does. Perhaps that is why she has been so accepting. At any rate, it always makes me feel good that she is so comfortable with my leaving her with a sitter.

 

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It’s Beginning To Look A “Little” Like Christmas

Like everyone else Christmas is a special season of the year for Kate and me. We used to do all the things that usually accompany the season. Kate always loved these things, decorating the house, shopping for just the right gifts, and sending Christmas cards. Over the years, we have done less. Sending Christmas cards was the first thing to go. I don’t recall exactly when that happened. I am reasonably sure it preceded Kate’s diagnosis. Come to think of it, that might have been one of the earliest signs of her AD. I do know that it was things like that that caused me to recognize she was making changes that didn’t match her long-standing personality.

Since the diagnosis, decorating the house had become a priority only when we were entertaining during the Christmas season. We gave up hosting any Christmas events several years ago. For several Christmases, we have done next to no decorating. It was never something that I had been actively involved with. My responsibility was the tree and in the past four or five years an additional tree in the front yard. Our area garden club sponsors an annual Christmas tree sale and encourages everyone to put a Christmas tree in our front yards near the street. Apart from that and a wreath, I don’t think we put up any decorations last year. I know we haven’t had a real tree for a while.

This year, I felt like I should take the lead and do a little more. First, I tried to convince Kate to help by locating our decorations and going with me to buy a few things. She wasn’t interested; so I took care of this myself. I bought a new wreath and put it on the front door. I bought some red bows and ribbons and attached them to some greenery and put one in each of the windows on the front of the house. Yesterday afternoon, I also put up the outdoor tree and the lights. I located a small artificial tabletop tree for a table in the family room. I found several hangers for the mantel. Now if I can only find the stockings, we’ll be set. Years ago, Kate had bought a 3-foot Santa that she has always placed in the family room. I have done that. This is only a tenth of what Kate used to do, but it is something, and we plan to enjoy the Christmas season. We would have done that anyway, but I am thinking this may be the last Christmas that Kate will be able to appreciate. I’d like it to look a little like Christmas.

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There’s A Difference Between Short-Term and Immediate Memory

During the early stages of Kate’s journey, I thought “short-term memory” referred to remembering things that occurred yesterday or this morning. As time has passed and her condition has worsened, I am now focused on what is called “immediate memory.” That is just what it sounds like and is very important in coordinating with people. A few minutes ago, I observed a good example of Kate’s very weak immediate memory.

We are at Panera, and she got up to go to the restroom. When she returned, I noticed a label on the pants she is wearing. The pants were inside-out. This surprised me because I had noticed the same thing at home before leaving. She had taken them off and put them back on again. When I mentioned this to her, she went back to the restroom to change. Then she returned again wearing them inside-out. This time I haven’t said anything. I suspect we will go home shortly. I will tell her then so that she can change before we go to lunch.

Another example of weak immediate memory occurred at home before coming to Panera. I had placed her morning pills on the island in the kitchen with a glass of water beside them. I do this almost every day. I thought she had started taking her pills but noticed that she opened the cabinet and took a glass that she was about to fill with water. I told her I had a glass of water on the island with her pills. She turned around to take her pills while I started getting ready to leave. Then I heard her say, “Somebody put salt in this glass.” When I looked up, I saw that she had picked up the glass that I was using to gargle with salt water. I had deliberately put the glass in a spot where I thought she would not see it. I was wrong again. I reminded her of the glass that I had put with the pills. This time she got it.

Perhaps the most common daily example of this involves her clothes. Whether she puts her own clothes out to wear or whether I do it, she frequently forgets them and gets something else to wear.

Her reaction to these things is different now than in the earlier stages of her disease. At that time she expressed more frustration and depression. Now I don’t notice any emotion. I think that occurs for two reasons. The obvious one is that she has no memory of what she has done. The other is that she seems to have reached a point at which she is not as bothered by how others perceived her nor how she perceives herself. I usually don’t say anything to call attention to these things, but sometimes I do. When that happens, she often says something like, “Who cares?” In some ways, I am both surprised and pleased that when I tell her about clothes that are either inside-out or backwards (both of which are very common), she often thanks me.

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The Power Of Music

We had a good day yesterday. As always, we enjoyed our lunch at the Bluefish Grill. Then we made our way to the Flat Rock Playhouse for “A North Carolina Christmas.” This turned out to be the best part of the day. The performers were all local area musicians. They were quite good. The style of the program reminded me of “A Prairie Home Companion” without the professionalism. We had heard two of the singers in several musicals in Knoxville. It was fun to see and hear them in another context. Kate loved every bit of it. That made my day since the sole reason I had made arrangements to attend was to provide her with something she would enjoy. Several times during the program the audience was invited to join in the singing. Kate sang, and I was pleased that she remembered the words to most of the songs.

That reminded me of our trip home from Memphis last week. As we were driving, I put on some fifties’ music. It had been a while since we had heard most of the music. Kate really liked it. I can’t say that she remembered a lot of the words to the songs, but she did remember key rephrases. It is obvious that music speaks in ways that ordinary conversation does not. That is especially true of music that is both familiar and well-liked.

Over the past few years, Kate has become very sensitive to a lot of the music that plays in restaurants. Almost every place we go, she complains about the choice of music. I wonder if I might have unintentionally influenced her in this direction. I love music and keep it on the car and at home. When she was having her early panic attacks, I started playing the second movement of Brahms’ Violin Concerto, something that I love and find very soothing. (These panic attacks have all been associated with her feeling rushed to get somewhere. I have tried not to push, but I have done so unintentionally a number of times.) She has never commented specifically, but it appears to me that when I play this in the car after her panic attack (and don’t talk), she calms down more quickly

That led me to create two playlists, each with very soft, gentle music. One is almost entirely classical. The other all popular music. I often play these while we are in the car. Again, she never says anything, but they seem to be soothing for both of us.

I would never say that our attendance at so many musical events has lessened the progression of her AD, but it has served both of us well. In my own case, I have found it to be an important and enjoyable therapy.

On the way home, we stopped for dinner at a popular restaurant east of Knoxville. As we walked up to the door, we noticed a man who looked very much like Santa sitting on a bench. Then I recognized him as a former client of mine. He had a stroke a couple of years ago and was unable to continue in his old position; so he retired. During the Christmas season, he enjoys playing Santa. We visited with him for about fifteen minutes or so while waiting for a table. I hadn’t seen him in quite a while and enjoyed hearing what he is up to. On top of that we had a terrific meal. It had been another good day.

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Learning To Think Like a Person With Alzheimer’s

I have often said that caregivers for people with dementia spend much of their time either trying to prevent problems or solve them. Like most caregivers, I like to think that I do a respectable job; however, I must admit that I often fail. I think I do so because my solutions always arise from my brain and not Kate’s. Let me illustrate what I mean with something that happened tonight.

I’ve commented before that over the past few weeks, Kate has gone to her room to get a night gown and come back wearing a robe and no gown. At first, I didn’t say anything. Later I asked if she would like a gown. On occasion she has hesitated, but almost always she says yes. Then I ask if she would like me to get one for her. Most of the times she says yes. It seemed clear to me that she really wants a gown.

I’ve been trying to figure out why she so frequently gets a robe instead of a gown. I’ve asked her, but she hasn’t been able to explain it. As I went through different possibilities, the first thing I thought was that it was difficult to pick out a gown because she has a number of each. They also get mixed up in her closet. This morning I decided to rearrange her robes and gowns. I grouped them so that she would see the gowns grouped together before she got to the robes which I put behind them.

Shortly after we returned from Flat Rock tonight, she came into our bedroom wearing a robe. I could see that she didn’t have on a gown and asked if she wanted one. She did. I asked if she wanted me to get one. Again, she did.

Now I’ve decided that the problem is that there are so many clothes hanging in her closet that it is simply too confusing for her. I say that because there have been occasions when she has asked me to get either a top or pants for her after she had looked and not found anything. Of course, all the literature on dementia points out the difficulty people with dementia have when presented with many different options. I need to get rid of some of the clothes she will no longer wear and reduce the number of options in main closet. It can be challenging when the person you want to help is unable to explain what she needs. And it’s impossible to be accurate when you can’t figure out what’s going on in her brain. I can’t imagine what she must be feeling when things like this happen.

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It Helps To Be Flexible

Many times I have remarked how fortunate Kate and I have been throughout this journey. I hope you have also been able to tell that that doesn’t mean we don’t face many of the same challenges that others are having. Caring for someone with AD always requires daily adjustments. For example, Kate and I got home from Panera about 10:15. As usual, she asked if she could “pick a few leaves” and then asked me where she should start, the back or the front. Usually, I just say wherever you want. This time I said, “Why don’t you start along the driveway.” We came inside. She brushed her teeth and then went directly to the back yard instead of the driveway. Of course, this was no problem because it doesn’t make any difference to me where she works in the yard. It’s just an illustration of the everyday things that occur because her memory is gone.

I should add that we are going to a Christmas special at the Flat Rock Playhouse this afternoon. Although this won’t be a “dress up” affair, I didn’t want her to mess up her clothes working outside. I didn’t mention this to her because I knew she wouldn’t be able to remember it. As we were approaching the time for us to leave for lunch, I looked out back and saw that she was sitting in a flower bed pulling up weeds. I knew that meant a change of clothes. It also mean adjusting our time schedule by going to lunch a little later. This didn’t bother me because I had already thought about going straight to Flat Rock from the restaurant. It worked out fine.

I relate this incident because it so illustrative of what happens everyday. As someone who has OCD tendencies, I generally follow through on my plans once they are made, but that doesn’t work with someone who has dementia. The result is that I often find that we start on one plan and shift to another before we even take the first step. It really pays to be flexible.

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Another Positive Experience With The Sitter

This morning I finally woke Kate at 11:00. It took her over an hour to get ready to leave for lunch; so that meant we didn’t have as much time as I would have liked before Anita, the sitter, was scheduled to arrive at home. Rather than rush Kate, I decided to call Anita and ask her to meet us at Panera where we were having lunch. That worked out well. That allowed me to leave and go back to the house to get ready for the Y. Kate and Anita stayed at Panera.

Once again, I am finding that four hours is not a lot of time when I go to the Y. After exercising, I met Mark Harrington for coffee. He is my technology guru and has handled the technical aspect of this website. We try to get together once a week. When we parted, I dropped by the ATM for some cash. Then my four hours was just about up.

When I arrived at home, Kate was sitting in a flower bed behind the house as she cleaned out some of the weeds. Anita told me they had taken a drive after leaving Panera. They had gone across town to Krispy Kreme. When they got back home, she said Kate went straight to the back yard. They had had a full afternoon themselves.

As Anita was about to leave, I thanked her. Kate quickly chimed in and said, “I’m the one who should be thanking you.” Then she walked over to Anita and gave her a hug. I never imagined things would go so well. It makes me happy.

After Anita was gone, I said, “So you went to Krispy Kreme.” Kate gave me a strange look. It was obvious that she didn’t remember going there.

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Sleeping Late Today

It is now 10:48 and Kate is still sleeping soundly. She got up around 9:30 to go to the bathroom but went back to bed. This is really highly unusual although she did sleep this late sometimes in the past few weeks. It could be that this is related to her cold although both our colds have been very mild. They have not interfered with any of our usual activity. It was a beautiful day yesterday, and she worked outside for more than two hours at one stretch. As with many other behaviors, it is not easy to explain each one; however, I am always trying to see any signs of a pattern than may be developing. If she is not awake by 11:00, I will wake her up for lunch. The sitter is scheduled for 1:00; so we won’t have as much time as I would like.

While she has been in bed, I have accomplished a number of things that I should have done before. I wrote two thank you letters, one to the Session of our church, the other to the man who wrote the resolution they had presented to me a couple of weeks ago. I also made hotel reservations in Lubbock for Christmas.

Since shortly after Kate’s retirement from her last school in 1990, a group of teachers with January birthdays has gotten together in January of each year to celebrate. This hasn’t happened the past two years, and I wanted to get them together one more time while Kate can still enjoy it. This morning I called one of them who has organized the event each year to see about our doing it this year. He had been thinking the same thing; so we are going to pick a date and then check with everyone else to see if it works. This was a special group to Kate. I want her to get together with them one more time.

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Catching Colds

For the past several days, my nose has bothered me in the morning. Yesterday afternoon, I noticed that Kate was coughing periodically. After dinner, the coughing increased. By this morning, it was clear that we both have colds. So far, they both seem mild. I have been taking Benadryl for the past few nights. I wondered about giving it to Kate but was concerned about possible interactions with medicine she is currently taking. A quick Google search confirmed my suspicions. She takes trazadone. I have been aware that it is commonly prescribed for people with dementia. It is an antidepressant that is sometimes given as a sleep aid. When combined with Benadryl, it can augment the usual effects of these drugs. In Kate’s case, she doesn’t appear to have a problem with a runny nose. The cough, however, can be annoying to her and to those around her.

I find myself a bit irritated when I get a cold, but I try to remind myself how infrequently that has occurred over the past few years. In fact, one of the ways in which Kate and I have been fortunate is not having other illnesses to contend with. I can’t remember the last one I had, but I am sure that it is more recent than Kate’s. Since they seem mild, I am hoping we will be rid of the bug in the next few days.