Another Caregiver Mistake, But a Successful Recovery

I work hard to respond appropriately to the challenging moments that Kate and I face. Sometimes, however, I find myself getting caught in a trap from which it is hard to escape. We had one of those experiences Sunday night after returning from Nashville.

Kate wanted to get ready for bed soon after we got home. Everything went smoothly until she had taken off her clothes. I was ready to help her with her underwear and night gown. Before we could take that step, she got into bed. I asked her to sit on the side of the bed so that I could help her dress. She said she would “in a minute.” I gave her a few minutes and tried again. She didn’t move. In the next few minutes, I explained that I wanted to help her get ready for bed before taking a shower. That meant nothing to her. I showed her the underwear and night gown and told her I would take my shower while she got herself ready for bed. That made her angry.

Then I suggested we take a step back and talk to each other more respectfully. The way she spoke to me changed immediately. She spoke to me in the same tone of voice in which I had spoken to her. In fact, it almost sounded like she was mimicking me. This began a very civil twenty-minute conversation in which she complimented me on the way I handled helping her dress. She was also very clear that I had spoken to her like I was ordering her and didn’t like my efforts to control her. While I was trying not to do that, I realized I was giving her “orders.” I apologized.

She continued to talk, but I found what she said to be confusing. She talked about “the woman.” At first, I thought she wanted me to get the woman to help her. Then I thought she wanted me to show the woman how I did it. I never fully understood. When I asked who the woman was, she pointed to the ceiling. That has become a frequent gesture that is usually accompanied by her speaking to people she sees in her hallucinations.

The upshot of this conversation was that she expressed her willingness to get dressed, but she still didn’t make a move to get ready for me to help her dress for bed. All this had taken forty-five minutes. I told her I didn’t want to push her and that I was going to take a shower. I showed her the clothes and told her she could put them on when she was ready.

I knew that she wouldn’t move while I was gone and wondered how I would handle the situation when I finished my shower. I decided that I would come back to her and apologize because “I forgot to help you get ready for bed before taking my shower.” That is exactly what I did. She responded as I had hoped. She accepted my apology and said that was all right. She was happy and ready for bed in less than two or three minutes. Another crisis was over.

Looking back, I could probably have avoided the whole encounter if I had tried to divert her attention away from getting dressed for bed in the first place, or I could have let her rest in bed for a while and then tried again later. I think I was taken aback when she didn’t follow my instructions the way she usually does. She always asks me what she should do next as she undresses and the puts on her night clothes. The only thing different was that she lay down in bed before we finished. I spent too much time trying to get her to comply. That’s a losing proposition. This was a rare situation, but one I hope to avoid in the future.

Caregiving is a Learning Process

I like to think I’m a pretty good caregiver. Like everyone else, however, I make my share of mistakes. Yesterday I encountered two situations that called for “doing the right thing.” I acquitted myself when faced with the first one. I failed miserably with the second one and then made a recovery by doing what I should have done in the first place.

Kate’s brother and his wife left early yesterday afternoon. They wanted to have a short visit with Kate before leaving for the airport. I encountered a problem when I tried to wake her. This was one of several mornings when she didn’t want to get up. Unlike those in the past, however, she seemed unusually tired and just couldn’t make the effort. I thought that when I told her that Ken and Virginia were coming over to say goodbye, she would give in. She wouldn’t. In fact, she started to cry. I decided not to push her. She had gotten to bed later three nights in a row. I believe it just caught up with her.

I visited with Ken and Virginia while she continued to sleep. I checked on her once to see if she was awake. I asked her if she thought she would be able to get up to tell them goodbye. She said she wasn’t. I asked if they could come to the bedroom to see her. I thought she would say no and decided to get dressed. I was wrong. She said that would be fine. I went back to the family room.

As it neared the time they needed to leave for the airport, I went back. She was awake. I went through the same routine. This time she agreed to get up. With her cooperation, I was able to get her dressed in record time, and everyone got to say their goodbyes. Patience had prevailed.

The second situation did not go so well. I washed our sheets during the afternoon and had put on the bottom sheet when she wanted to get ready for bed. She had her night gown on when I told her it was time for her meds. She thought I meant for her to take off the gown. As she started to take it off, I said, “No, you don’t need to take off your gown.” It was too late, and she was irritated with me for not being clear about what I wanted her to do. Then she got into bed. I told her she needed to sit up to take her pills. She wanted me to give them to her while she was lying in bed. I told her that she might spill the water or choke when she swallowed. I decided to let her try it. She immediately spilled water on herself and sat up. Then she took the pills.

After that, she got back in bed with her head at the foot of the bed. I told her to turn around so that I could finish making up the bed. That irritated her, and she and said, “You can do it like this.” I explained that I needed to put on the top sheet, blanket, and spread, and I would cover her head. She was insistent about not moving. That is what led me to do the wrong thing. I decided to take what I thought was a lighthearted approach and pulled the top sheet over her. When I brought the sheet over her head, she was furious. That is when I did what I should have done. I told her I was going to the family room to watch the 49ers/Packers’ game and to call me when I could make up the bed.

Fifteen minutes later I went back to the bedroom. When I walked in the room, I said, “I think I’ll get ready to take my shower, but first, I’d like to make up the bed.” She said, “Could I help you?” I readily accepted her offer. When the bed was made, I thanked her and gave her a big hug. The crisis was over. She was fine after that.

I am reminded of something I heard many years ago. A local child psychologist told me that “No” is the most powerful word a child can utter. He suggested that parents try to avoid getting into situations that lead to a child’s using it. That is because most of the exits lead to other problems. I believe the same is true with people with dementia. Kate was resistant to my asking her to get up and let me make up the bed. My effort to get her off the bed caused her to dig in her heals. She wasn’t moving. She doesn’t like to be pushed. I know that, but I have never seen her respond this way before and don’t want to see it again.

Unanticipated Issues

Yesterday things were going well. Kate woke up early, showered and dressed without any difficulty. I was especially pleased because we were going to visit friends in Nashville, and I was eager to eat an early lunch before our departure. We were also early enough to get to Panera for a short time and get back home for Kate to rest another hour.

Lunch went well until very near time to leave when she started looking for her napkin. At first, I didn’t know what she wanted because she couldn’t remember the word for napkin. When I asked if she was looking for a napkin, she said she was. I pointed out that she had put under her plate with her utensils. She didn’t understand and said, “Where is it?” I pointed to it. She pointed to her salmon and said, “This?” I told her it wasn’t and reached across the table to point at it. She didn’t see it. Then I put my hand on it and said, “This is it.” That didn’t work. Then I asked her to pick up her plate. She didn’t understand. I picked it up and put it to the side. Then I showed her the napkin and told her she could wipe her hands with it. That didn’t work either, so I said, “Let me show you.” I got up and went to her side of the table where I picked up the napkin and started wiping her hands. Her mood changed immediately. She said, “I wanna’ get out of here.”

It was a frustrating situation for both of us. I didn’t have any trouble understanding that she was having two problems, both of which are directly related to her Alzheimer’s. One is her vision. The other is her ability to understand directions. I was trying hard not to show my frustration, but I wasn’t successful. As we left the restaurant, she said she couldn’t do anything right. I thought she was upset with me, but it turned out she was only thinking about her inability to follow my instructions. I felt guilty for making her feel that way. After we had been on the road to Nashville about fifteen minutes, she was fine again.

This episode is a good example of how quickly things can change. It is also a reminder of something I already know. I need to be very careful how I respond in situations like this. She is very much aware of her problems, and I don’t want to diminish her sense of self-worth.

What Can the Horse Whisperer and Mr. Rogers Tell Us About Caregiving?

In 2011, Robert Redford produced and directed the film The Horse Whisperer. It was based on a real story about Burt Brannaman whose unconventional approach to breaking horses captured the attention of many people like me who know little or nothing about them. My crude interpretation of his method is that he establishes a relationship of trust with horses. He does this gradually in small steps by connecting with them in a non-threatening way. The result is that he achieves success without forcing them into submission but gaining their trust. He thinks this is a gentler and better way to achieve the same end.

In the past year, Mr. Rogers has also been the subject of two films. Each in different ways captures Rogers’ approach to relating to children (as well as adults if we take It’s a Beautiful Day in the Neighborhood literally). It strikes me that his approach with children was very similar to that of Brannaman’s with horses. In both cases, the men are keenly sensitive to the little things that can frighten or comfort horses or children. That includes what one says, how it is said, tone of voice, facial expressions and body language.

As I think about it, both Brannaman and Mr. Rogers have something to tell us about caregiving. As people with dementia decline, the world around them must seem strange. I know that Kate is quite insecure and looks to me for security. Even situations that have been routine for years can be a bit frightening. Yesterday, I took Kate to a hair appointment. Recently she has had trouble getting into the chair for her shampoo and expressed her feelings in a loud audible way. I helped her into the chair the last two appointments. That has worked well. This time she wanted me to stay with her and to hold my hand. During the past year, I dropped her bi-weekly massages and her pedicures because she was frightened by them.

I say this to suggest that Kate’s failure to understand the situations she faces is similar to the way horses and children react when they are confronted by something new. I have learned the hard way that I need to interact with Kate the way Brannaman relates to horses and Roger interacted with children. That doesn’t mean I don’t make mistakes. I did yesterday and was fortunate to make a comeback when I returned to a more sensitive approach.

Yesterday she wanted to be more independent, and I have grown accustomed to doing more things for her. That didn’t mix well. She seemed especially slow in getting ready for the day. She spent almost twenty-five minutes brushing her teeth and washing her arms and face. The washing of her arms and face is normal, but she took longer to do it this time. Several times when she was brushing her teeth and showering, she told me to stop helping her and said, “I am not stupid.” I apologized and backed off. It wasn’t just that I changed what I said. I also changed the tone of my voice and facial expressions. She is very good at reading those. I remained with her but didn’t offer any suggestions. I did help dry her. She appreciated that.

As she often does, she wanted to rest a little. I left her in bed for about thirty minutes before returning to see if she wanted to get up. I was careful not to suggest that she should get up or that I was pushing her. Fortunately, she said she was ready for her clothes. I only helped her when she wanted help.

After she was dressed, she wanted to lie down again. I told her that would be fine. I put on the album from the musical Annie and went to the kitchen. I returned fifteen minutes later to see if she was ready for lunch. She was in a good humor and ready to get up. From that point on everything went smoothly. One would never have guessed that she had been upset with me at all. It took almost two hours from the time I went in to get her up until we left, but it paid off. Rushing her only makes things worse. I know that well but didn’t approach her that way from the beginning.

It was clear from the time she got up that she was moving slowly. I believe if I had begun with a gentler approach, we wouldn’t have had a problem at all. I was impatient at her slowness and the fact that she spent so much time washing her face and arms when she was about to get in the shower. That didn’t make sense to me, but that was not what mattered. It probably made sense to her because she couldn’t remember that she was going to take a shower. At any rate, I have learned that it pays to be in sync with her mood and desires and move from there. I think Brannaman and Mr. Rogers would agree.

A Common Occurrence

Kate and I are in the dining area of our hotel where she is having some juice and yogurt. She has her iPad with her as do I. She is still waking up even though she has been up almost an hour and had her shower. That is quite a contrast with my own morning pattern. I wake up ready to go immediately. This sometimes (often?) leads me to spring into conversation more quickly than she would like. That is especially true with her Alzheimer’s. She is much slower getting ready for social interaction in the morning. So here’s what happened a few minutes ago.

Last night I received an email from Ken in which he thanked Kevin and Rachel for hosting the Christmas dinner. He included several photos taken yesterday and attached them to his email. I hadn’t shown them to Kate last night because she had already gone to bed. While Kate was working a jigsaw puzzle on her iPad and eating her breakfast, I remembered the pictures and showed them to her. There were only four or five and had gotten through two or three when she said, “Do we have to do this now? Can’t we do it later?” I quickly realized I had misunderstood her priorities at that moment. She just wanted to relax quietly with her breakfast and iPad. I thought she would be eager to see the pictures. Once again, I was seeing things from my own perspective and not hers. She even said, “You always want to do things when you want to do them.” Herein lies one of the challenges for a caregiver of a person with dementia. You are always working to think of things to help but discovering that you aren’t always able to see things from the perspective of the one you want to help.

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.

Sometimes I’m Not So Organized

As one who has a few OCD tendencies, I like to think my life is reasonably well-organized. Kate’s Alzheimer’s has tested that, and I regularly come up short. Take this morning, for example. Kate was up when I returned from my walk; so instead of going to my computer and checking email, I thought I had better change clothes to be ready when she wanted to go to Panera. I also got her morning medicine ready for her, closed down my computer and put it in its case. Then she came out before I had gotten everything ready. When she is ready to go, she doesn’t like to wait on me. I noticed that she was wearing brown shoes with her black slacks. I asked if she had wanted to wear brown with what she was wearing. She said, “No.” I went back to find a pair of black shoes. I looked everywhere without success. Then I decided to look under the furniture in our bedroom. I knew she had been wearing black shoes there last night. I found one shoe under her chair along with some socks and tissues. It is a cold morning; so I then went to get coats for each of us. In the meantime, she had gone outside to pull leaves while waiting for me. As I walked by one of our bedrooms, I noticed that she had a couple of her outfits laid out on the bed. I’m not sure why, but I pulled back the top to one outfit and found one pair of black shoes and the mate to the other black shoe I had found under her chair. I put one pair of shoes in her closet and took the other to give to Kate.

As often happens, I couldn’t’ find Kate’s iPad. She uses it to work jigsaw puzzles at Panera. I used the Locate My iPhone app to find it. Then I rushed back to the kitchen with her shoes in one hand, put on my coat, picked up hers, and got my laptop case with my computer and our iPads, and went outside. She put her coat on right away. We got in the car where she put on her shoes. We arrived at Panera, and I discovered I had left our cups at home. That’s a minor thing, of course, but that is one of the things I always do. We save 80 cents on each drink when we bring our own cups. After we were seated a few minutes, I remembered that we have a luncheon at church tomorrow, and I had not put that on the calendar in my phone. When I reached in my pocket for the phone, I discovered that I had left it charging at home. Each one of these things is of little importance, but the whole episode is a good illustration of how I frequently slip on a variety of things that I might not have done otherwise. If I can just limit this to the unimportant things, I should be fine.

Irritability

For a long time Kate has teased me about trying to control her. It has always been tinged with a note of seriousness. Yesterday she expressed clear irritation with me. It happened as we were returning to our apartment here at Chautauqua from the afternoon lecture. She began as though we had already been having a conversation. That has happened before. She believes we have talked about something but haven’t. Her first references to a move to Texas.

This time she started very diplomatically. She said she wanted to tell me something, but she didn’t want to make me mad. I told her I wouldn’t get mad. She then said that I don’t consider how she feels about things, that I simply go ahead and make decisions for her. She illustrated that by noting that when she says, “I am hungry” I will say, “How can you be hungry. You just ate a while ago?” What surprised me most is that is a good recollection of a number of experiences we have had. In fact, it happened yesterday before we attended the afternoon lecture. At that time, it had been slightly over an hour since we had eaten lunch.

From this she continued to tell me other ways in which I tried to control her. At least one of those was something I had never done. I can’t recall what that was, but her mention of it reinforced my thinking that she had imagined some events or things. At the same time, she was also responding to something that is genuine. I do find myself taking charge of more things. I try, however, to let her be as independent as I can. One of my challenges is that there are some things that she is happy for me to do. In addition, there are some occasions when she is happy for me to do something that on other occasions she would resent.

I will need to be even more sensitive about these things in the future, but I am sure I will stumble along the way. I am taking this experience as one more indicator of the transition we are going through.

I am also asking myself. How much is my desire to take trips like this one to Chautauqua rooted in my own personal desires versus what I believe she would like. I think it is a combination of both.

Lost Yet Again at Chautauqua

This is a post I would rather not write. I am driven to do so by the possibility someone out there might have the mistaken idea that I am caring for Kate perfectly. I left Kate at the apartment this afternoon for about an hour and a half. When I returned, she was gone.

I wouldn’t have done this at all if I hadn’t gotten her out of bed this morning at 10:30 to get to the morning lecture at 10:45. That was followed by lunch, a quick stop by the apartment to brush teeth, and on to a 2:00 lecture with Bill Moyers. Before coming this year, there were two speakers I definitely wanted to hear. One is Alan Cooperman who heads the division of research on religion at Pew Research. I have read so many of his study findings and wanted to hear his presentation.

Knowing that Kate would want to have a break, I brought her back to the apartment. She said she was going to rest a while. I told her I didn’t want her to go anywhere. She said, “Oh, I wouldn’t go anywhere.” Of course, I knew she couldn’t remember.

When I returned and found her gone, I was panicked. It was daylight, and it is a safe place. On the other hand, it was beginning to rain. I knew she hadn’t taken an umbrella or rain jacket. The first thing I did was to walk across the street to the Brick Walk Cafe to see if she might be there. Then I walked around the Plaza and went into the book store. I came back to the apartment and checked again. I saw the neighbor in the apartment next to us and told her to be on the look out. I left to retrace my steps and still did not find her. I decided to contact security. I did so by going to the visitors’ center. They called security for me. I gave them a description of her. Then I went to the market here on the plaza and bought some gauze and hydrogen peroxide to clean up several cuts to my arm. I had taken a fall on the way back from the 3:30 lecture. There I told the people about Kate. I also told a driver of one of the small buses that circulate the area to be on alert for her. I told people at a dress shop in St. Elmo about her as well. On the way back to the apartment I saw a young man, Kyle, who was driving a golf cart and stopped him. It turned out he was with security and was out looking for her. As I was talking to him, I got a call from a man who said she was with him on Robert Street. I thought he was with security, but it turned out that he was with the Ecumenical House that is around the corner from our apartment. She apparently wandered over there. I will have to find out how he got my phone number and to thank him.

Feeling Guilty (Again)

This is not my “finest hour.” After causing two panic attacks this week, I frightened Kate tonight. After dinner, we came into our bedroom where I turned on the news, and she got on her computer for the first time in 8-12 months. About 7:15, she wanted to go outside. She apparently knew that I had closed up for the night and asked which door she could go out. I told her any one she wanted. She pointed to the front door, and I said that would be fine
Just before 8:00 I started to call her inside. She had been a bit bored today; so I decided to let her remain outside longer than usual. Just before 8:30, I went out to call her in. She was standing on the walkway in front of our house. At first she seemed a little irritated with me. I said, “Did you want me to call you in earlier?” She said yes and came inside. Then she broke into tears. She said she had tried to get inside but everything was closed and locked. Then I realized that she had not remembered that she had come out the front door which had remained opened the whole time she was outside. She said she didn’t know where I was. She said she thought I was trying to teach her a lesson. She just got out of the shower and seemed to be all right. I told her I felt bad for not calling her in sooner. Then she started crying again. She has her nightgown on and is sitting on the bed in tears.

I should add that I have tried to console her, but she keeps saying, “That’s all right. I’ll be fine.” She has also said, “It’s not your fault.” She is still crying.

The Next Morning

Shortly after my previous post last night, I got into bed with Kate and held her. She was still whimpering, but shortly she settled down. This morning I wanted to ask if she remembered the events of last night but felt it was wiser not to remind her. All is well now. I, too, am feeling better.