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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.

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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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Sign Language Can Be Confusing

Kate continues to use hand signals to ask some of her questions. Most of the time I understand what she is asking, but not always. Take this morning, for example. We were waiting at a stop light on the way to Panera when she looked at me and pointed in the direction of her cup sitting in the holder of the console. She also had the lid of the cup in her hand. I thought she was asking whether or not to take her cup into Panera, but that is something she is more likely to ask when we arrive at another restaurant. She gave me a disconcerted (irritated) look, and I told her I didn’t know what she wanted. That prompted another look. Then I realized that what she wanted was a napkin. I try to keep them in the car to wipe the saliva from her mouth. (She still doesn’t swallow her saliva.) When I realized that was what she wanted, I opened the console and gave her a napkin. Then I said, “I thought you wanted something to do with your cup.” She said, “Nice try, but I’m not going to let you get away with that.” I said, “Well, I usually do a pretty good job.” She smiled and said, “Yes, you do.”

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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.

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A Very Nice Sunday

From start to finish, Kate and I had a nice day today. I was up just before 6:00, had breakfast, took a 2.5-mile walk, and returned home before she was up. I checked email and worked on preparing this journal to post online by the end of January. Kate slept a little later; so we didn’t get to Panera until almost 10:00. That had been a typical time for us until the past couple of weeks before Thanksgiving. I think she is still recovering from the trip to Memphis.

One of the things that may have accounted for such a nice day was our schedule. It was broken into small chunks of activity. We spent about an hour and a half at Panera and then went straight to lunch. We arrived back at the house just before 1:00. As she usually does, Kate asked if she could work outside for a while. I told her I would be glad for her to do so. She expressed surprise once again. Then she asked if she could use her clippers. That’s when I reminded her that we couldn’t find them yesterday afternoon. I bought 3 new clippers two weeks ago. They have all “disappeared” now. I came inside to catch portions of two different football games. She worked almost two hours before coming in.

When she came inside, she said she was going to take a shower and then pointed to the bathroom off the guest room, the one she usually uses. A few minutes later she appeared wearing a different top and was all ready to go someplace.I asked if she would like to go to Barnes & Noble. She said, “Anyplace.” Off we went. About 4:30, I suggested we go home. That would give us about an hour before going to dinner. She accepted that.

She worked outside for almost an hour before coming in. By then it was time for dinner. We went out and returned home by 6:45. I suggested that I make a fire and that we both relax for a while. We did. Brian called about thirty minutes later. We had a nice conversation with him. When we hung up it was about time for us to call it an evening. I took my shower. She got ready for bed and worked on her iPad for another hour. Then retired for the evening.

I am now catching a little bit of the Packers/Steelers game. It has been a good day. We didn’t do anything elaborate, but we enjoyed the day and being together.