Posted on

A Day of Ups and Downs

As I said in my previous post, Kate was resting peacefully yesterday morning though not asleep. When I felt it was time to get her up for lunch, I encountered what appeared to be a combination of anxiety and depression. She didn’t want to get up. I quickly sensed that this wasn’t something I had faced before. She seemed more frightened. It was also one of those times when she wasn’t sure who I was and wasn’t as trusting as usual.

I decided not to worry about getting her up immediately but to see if I could comfort her as I have done in the past. I brought in the photo of her mother from the hallway. She looked at it but didn’t say anything nor did she express any interest in seeing it. I put it back and brought in the “Big Sister” album with the photo of her and her brother on the cover. She was mildly interested. She did recognize herself, but it didn’t do a thing to change her mood or readiness to get up.

I said, “You look frightened. Are you?” She nodded her agreement. I said, “I would like to help you if I can.” She said, “I know you want to help, but there isn’t anything you can do.” I asked if she could tell me about it. She couldn’t. I continued to talk with her very gently focusing on making her comfortable with me. That paid off.

After what was probably fifteen minutes, I asked if I could take her to lunch. She said, “I don’t know.” Then I suggested that she might feel better if she got dressed and we went to lunch. She didn’t buy into that immediately, but I assured her that she would feel better if she got up. She finally agreed.

When she got to the family room, she started to recover. She took an even longer time looking at the plants on the patio and the trees behind our house. She also perked up when she saw her ceramic cat just before entering the kitchen. All of this stimulation took her mind off of her fright. It looked like she was fine. Then as we stepped out of the house into the garage, she became frightened again. She didn’t know why.

We got into the car, and I put on some music that I hoped would help to calm her. That worked. By the time we reached the restaurant, she was all right. We encountered only one issue during lunch. She asked my name. I told her, and then she became very sad about not remembering it. Then she asked her name. When I told her, she tried several times to repeat it, but was only able to do it with great difficulty. The rest of our lunch went well, and we got back to the house without any problems.

As she often does, she asked what she could do. I gave her the usual options. She decided to look at a photo book. I decided to let her look through it by herself. I read the introductory information. Before I finished, she was tired and wanted to rest.

She rested about two hours before I asked if she would like to look at some of our old 35 mm slides that I had converted to digital a few years ago. She usually declines. This time she surprised me. I got my laptop and sat down beside her. I started with photos from the Fall of 1968 when our daughter was born. She enjoyed seeing them. It had been years since we had looked at them. We spent almost an hour doing that before going to dinner. It was a highlight of the day.

As we drove home from dinner, she became concerned about “the other people” who would be “there.” I explained that we were going to our house and that no one else would be there. I told her it would be a time for us to relax without any obligations. That seemed to relieve her. At least she didn’t say anything more about it.

At home, she surprised me again by working on her jigsaw puzzles for over an hour without much help. After that she was tired and wanted to quit. We adjourned to the bedroom, and she was in bed around 8:00. It is almost 10:00 this morning, and she hasn’t gotten up. I’ll let her sleep until 10:45 if she doesn’t wake sooner. I am hoping for a better day.

Posted on

Dependence and Anxiety

Kate’s dependence on me continues to increase. That is particularly true in the morning when she wakes up. The way I explain it is that all of the circuits in her brain shut down as she sleeps. When she awakes, they start to connect again. Her memory fails, and she can’t make sense of where she is. Some mornings it is much worse than others. That can lead to anxiety as it did yesterday and today.

Day before yesterday, as she has done frequently in recent days, she got up to use the bathroom around 6:30. She needed my help getting to the bathroom and back, but that was no different from other mornings. Around 10:30, I noticed on the video cam that it looked like she was about to get up. When I got to the bedroom, she was still lying down. She looked frightened. I asked if I could help her. She said, “I don’t know.” That is a frequent answer when the only thing she knows is that she doesn’t know “anything – where she is, who she is, etc. In moments like these I assume that she doesn’t remember my name or our relationship. I focus on trying to comfort her and relieve her anxiety. I sat down on the bed beside her and said, “I am here to help you with whatever you need.” She said, “What do I do?” I explained that she it was about the time she usually got up to dress and that we could go to lunch together.

I got her up, and we went to the bathroom to brush her teeth. As we walked, she shook with fright. I assured her she was going to be all right and that I would be with her. She held my hand very tightly. When we got to the sink, I started to put toothpaste on her toothbrush. She snapped at me saying, “I can still do some things by myself.” She quickly apologized for talking to me that way. Then she said something I can’t remember, but I took the meaning to be “I just want to be myself again.”

That and a similar comment she made while dressing confirmed the suspicions I have had for some time. Her self-awareness is still strong. She knows she has a serious problem and at times like that it is painfully frightening. What she doesn’t know is that she has Alzheimer’s, and that she is not going to improve.

I told her I would be able to help her. Then I relied on diversion once again. It has worked well in the past. It worked again this time. I repeated my usual routine. I showed her photos of her mother and grandmother in our hallway. Then we walked to the family room and let her respond to the flowers, photos, and all the greenery behind our house. She recovered and was fine the rest of the day.

Yesterday I forgot to turn on the iPad I use to monitor the video cam until I was about to serve up my breakfast. When I did, I saw that the door to the bathroom was closed. I got to the bedroom as she was just coming out. She was not as disturbed as she was the day before, but she was certainly uneasy. I helped her back to bed, and she thanked me. Then she said, “I feel better knowing you are here.” I said, “Would you like me to bring my things back here and stay with you?” She did, and I stayed until it was time to get her up for lunch. She slept about an hour and a half. Then I saw her running her fingers through her hair. I had music playing softly. She was very peaceful.

These two experiences are unusual, but her dependence on me steadily increases. It’s expressed in little things like wanting to hold my hand while we are walking. I’ve grown accustomed to hearing her say, “Take my hand.” or “Hand.” She also says things that more directly communicate that dependence. Yesterday, for example, she said, “I don’t feel scared when I am with you.”

I will report on the rest of the day in my next post.

Posted on

We Still Have Happy Moments

In my last post I mentioned a sad moment Kate and I had experienced when she was so disturbed about the way she looks. I’d like to balance that with a couple of happy moments. We still have them, and they seem more important now than ever before. I think about “moments” more lately because it seems harder for me to describe a full day in a single word.

Two times in the past few days we have had an especially good time looking through her family photo books. Both of those occurred after her afternoon rest. In each case, I took the initiative of suggesting we sit down side by side and look at one. I make a point of that because she often looks at the cover of one of her books, but she doesn’t spend much time with them by herself. I think it must be that she doesn’t recognize the people, at least most of them, and she doesn’t have the ability to recall or imagine anything about the pictures or the people in them. She needs someone to give her specific names and information that provides the context for what her eyes see.

As it is for other activities we share together, I have as much fun going through the photo books as she does. Of course, a significant aspect of the pleasure for me is seeing her eyes light up and hearing her enthusiasm as we look at each photo. She continues to comment on people’s smiles and their eyes. Her primary interest appears to be in the mood of each person. I don’t recall her mentioning anything about clothes that people wore or anything else. She does say good things about her family as a group. Her strongest feelings are for her parents, especially her mother, but she expresses those mostly when she looks at some of their framed pictures around the house.

I find these moments a good substitute for our afternoon trips to  Barnes & Noble. We rarely go there now. When we finish, it is about time for dinner. It sets a nice tone to our relationship that extends until bedtime. That remains the most predictable good time of the day. I think that is because neither one of us feels any pressure. It’s a time when we just relax together.

Yesterday Kate was in a good mood when she got up, and it lasted all day. At lunch we had another happy moment. Kate was unusually talkative. I can’t begin to remember all the things she said. A lot of it involved how fortunate she and I have been. She was upbeat about everything.

There was a sad moment, however, when the server stopped at our table and said something nice to Kate. After she left, Kate commented on that. She specifically noted that the server had talked to her and that people usually talk to me. I have noticed the same thing. She didn’t seem disturbed about it. I think there are two things that account for that. One is that people don’t know what to say. The other is that Kate is slow to respond. That makes it hard for her to play an active role in a conversation with three or more people.  The conversation then drifts to one between the others and me.  Maybe that is why conversations like the one we had yesterday mean so much. She is relaxed and can be herself.

Last night we had dinner with a couple we know from our music nights at Casa Bella. We arrived first, and Kate already seemed like she needed to prepare herself. As she often does when it is just the two of us, she picked up the menu. She quickly found that she couldn’t read it and asked me what she should get. I explained that she usually gets either the Tortelloni alla Stephania or the Tortelloni alla Panna. I told her I would order for her and that she had the Stephania last week, so she might like the alla Panna this week. She tried several times to pronounce it.

About that time, our friends arrived. As soon as they were seated, Kate asked their names. She tried to repeat them back and was able to do so after a couple of tries. Of course, she forgot them immediately, so she asked again several times back to back before stopping.

Then she gave her attention to what she should order. I told her I thought she would like the Tortelloni alla Panna. She tried unsuccessfully to pronounce it. Then she asked Lisa. She and Lisa worked on the pronunciation a few times. Fortunately, the server came for our order a few minutes later, and I gave her our orders. Kate was off the hook. She must have felt a sense of relief to have that hurdle behind her.

She really wanted to be a part of the conversation, but it was too hard for her. Lisa is a fast talker. Ben speaks softly. At first, she kept asking each of them to repeat things that she didn’t understand. After a while, she just gave up. Because it was such a challenge for Kate, I thought this was likely to be one of the last times we get together. When we said goodbye, I asked Kate how she had enjoyed the evening. She said she enjoyed it.  She didn’t seem bothered in any way. Nevertheless, I believe situations like this may become even more difficult in the future. I will certainly stop them if that happens. Until then, I think it is good for both of us to have the additional stimulation of being with other people.

Experiences like this make our happy moments together even more important. I am optimistic that we still have a lot of them in the days ahead whether it is just the two of us or with others.

Posted on

Unusual Behaviors

I’m exercising an extra measure of discipline this morning. I just finished my forty-minute walk around the house while listening to All the Light We Cannot See. I am getting to the end of the book now and was having one of those “driveway moments” they sometimes talk about on NPR. I was tempted to continue walking just so I could hear what happens next. Then I should take advantage of a little extra time to upload a post before my self-imposed deadline of 9:00. I haven’t been very good at that lately.

When I wrote the message on my “Alzheimer’s cards” I carry in my wallet, I settled on a message that says, “My wife has Alzheimer’s. Sometimes she may say or do something unusual. Your patience and kindness are appreciated.” I struggled with the word “unusual.” I wasn’t sure it communicated the right message. As time has passed, I feel that works pretty well. Kate often says or does something unusual whether we are at home or out. Here are a few things I have observed recently.

Putting saliva on her fingers and wiping it on her face. This habit is paired with her hair pulling that begins shortly after she lies down to rest. She catches a few strands of hair at her scalp and gently pulls them upward until she reaches the ends and lets them fall. She is meticulous and proud of the way she does this moving from one side of her head to the other.

I can’t say when wiping her face with saliva began. I have only noticed it in the past week or two. It seems to occur after she finishes with her hair. So far I haven’t seen her do either of these things in public. At least once she has told me to watch what she is doing as though she is proud of doing something beneficial to her skin. The good thing is that washes her face and arms when she washes her hands and/or teeth.

Another one I have mentioned before is rubbing her fingers between each of her toes after she showers and before I put on her socks in the morning. She often says, “I’m getting them.” Sometimes she holds her finger out to me and says, “See.” I’ve never been able to see anything.

While these things are only done at home, they are consistent with other behaviors that are more public. The other night at Chalupas she asked me for a cup. I wondered why she was asking and pointed out that she had a cup that was full of Dr. Pepper. She scooped up a spoonful of her Pollo Fundido (Chicken and rice topped with cheese) and dropped it in her cup. When she finished her drink, she noticed the residue of food at the bottom of her cup and called my attention to it. She hadn’t remembered putting it there. I like to think that she might not have done that if we had been with other people, but I’m not sure.

Last night she deliberately put a small piece of her bread on the table. It was mostly crust which she doesn’t like. Later in the meal, she suggested it was almost dead. I said, “Do you think I should put it out of its misery?” She said, “It’s up to you.” I picked it up and put it on a plate. Then she started looking at small specks of other debris from her plate. She saw one black spot and crushed it with her finger. Looking at small spots like this is very common, and she seems to treat them as though they are alive.

Posted on

Delusions, Paranoia and Other Things

Yesterday, Kate woke up on her own before 10:00. I took her to the bathroom. After that, she wanted to lie down again but didn’t go to sleep. I got her up and dressed in time to have lunch at noon. Prior to that I didn’t observe anything much different from any other day. She wasn’t especially cheerful, but she wasn’t depressed. As on other mornings, she expressed her greatest enthusiasm for the photo of our daughter, the flowers, the backyard, and the photo of our son.

At lunch, everything was going along well. She asked multiple times about the Frank Sinatra mug shot. Then late in the meal she looked at a large poster of a bottle of Cinzano. She had asked about it only two or three times before. When she asked, I explained that it was a brand of Vermouth and often used in Martinis. That led to explaining a Martini. I told her it was gin with a very small amount of Vermouth, sometime so small that one could hardly tell it was there.

That may have sparked something. She said, “Sometimes somebody could try to slip that in your drink.” We went on with our meal. Our server brought her another Dr. Pepper. Kate took a sip and had a look of suspicion on her face. She said, “I think someone in here is trying to get me. I’m not going to drink it.” I asked if she knew who “they” were. She said, “No. I think they’re working with her (our server), but she doesn’t realize it.” In another minute, she showed me a small piece of tomato that was in her orzo. She said, “See.” I said, “Is that something they planted?” She nodded.

She continued to talk about the need to be careful and that they might get me as well. It wasn’t long before our server asked about dessert and mentioned they had pumpkin cheesecake. I discretely let her know that Kate doesn’t like pumpkin. Then I told her that sometimes “we” eat things that “we” didn’t like in the past and to bring us a piece. When she bought it out, she whispered in my ear that she had added extra whipped cream on top because she knew that Kate likes it. As it turned out the problem wasn’t the pumpkin itself. She took one bite and liked it, but she said “they” had gotten the cheesecake as well as the Dr. Pepper. She took one other bite, but I ate the rest.

I know that paranoia is one of the common symptoms of Alzheimer’s, but this was the first occurrence for Kate. I’ll be interested in whether or not we have a repeat.

The other experience occurred at a local theater. We went to see Into the Woods. We had seen this quite a few years ago on Broadway and were not taken with it; however, I know that it received a lot of awards. That made me think about going. We have a season subscription, so it didn’t cost anything extra. I went prepared to leave at intermission, if necessary.

It turned out that was a good plan. The only thing better would have been to have stayed at home. It was simply too complex for Kate to enjoy. In addition, much of Sondheim’s music is not melodic. She just couldn’t get into it. Throughout the first half she gave me lots of dirty looks as if to say, “You are the one who brought me here. Now get me out.” Several times she gave me an angry look when I applauded.

When intermission came almost ninety minutes later, I said, “Let’s go.” The irony for me is that I thought the musical itself was very creative and well-done. In fact, it was the best cast I have seen at this particular theater, and we have attended off and on for thirty-five years. The quality of the singers was excellent. When I said that to Kate as we walked to the car, she agreed the cast was great. It was interesting that her displeasure did not affect her evaluation of the production itself.

We didn’t talk much on the way home. I decided it was a good time to play music that I know Kate likes. I learned a lesson today. We have always been willing to take a chance on theater productions. Most of the time, we are glad we went. At this stage of Kate’s Alzheimer’s, however, I need to be more careful in what I choose to see.

We relaxed at home for an hour before going to dinner. I played a Barbra Streisand album that she likes while she rested on the sofa. Our son called during that time, and she enjoyed his call. She spoke a little more than usual and gave him a sincere thank you for calling.

After Kevin’s call, we went to dinner and then back home to watch a portion of Fiddler on the Roof. We had watched about an hour the previous night. Last night she just couldn’t get into it and wanted to go to bed.

At 2:00 this morning, I felt Kate move. She was sitting up on her elbows. I asked if she needed to go to the bathroom. She said, “No. Where are they?” I said, “What do you mean?” She said, “My notes. I can’t find them.” At this point, I knew she must have been dreaming. She started feeling around the bed with her hands. She asked me to turn on a light which I did. Then she got out of bed and looked around the room. When she didn’t find them, she looked in the bathroom. Of course, she didn’t find them, but she did bring back two photos she likes. One was our daughter in her wedding gown. The other was a photo of my mother and me on Mother’s Day two years before she died. She put them on her bedside table.

I thought she was going to spend a good bit of time looking around. It was only after telling her several times that I thought she should get back in bed and wait until morning to look any further. All this took about fifteen minutes. When she got back in bed, she couldn’t get the notes off her mind. She kept talking about trying to find them. I promised her I would help her search this morning. We must have been awake another thirty minutes before dozing off. I am counting on her not remembering any of this when she gets up.

Posted on

More Signs of Aphasia

Kate’s vocabulary continues to shrink. At lunch on Friday, she picked up her knife and asked, “What is this?” I said, “It’s a knife.” She said, “What’s a knife?” I explained that it was something we use to cut our food. She said, “So it’s a cutter.”

Saturday morning after brushing her teeth, she showed me the toothpaste and said, “What’s this?” I told her that was the toothpaste she had used to brush her teeth.

I should add the word “wife.” That was the word she didn’t remember yesterday morning when I told her we were “husband and wife.” Of course, I shouldn’t forget “glasses.” She has so often commented on my glasses suggesting that I might look better without them that I was surprised when she forgot that word.

These are just a few of the words I have had to explain in the past few days. As I have said in the past, I don’t mean that these words are now completely dropped from her vocabulary. I suspect if I showed her all of these objects right now, she might identify them correctly without hesitation. The point is that they are signs her memory for everyday things is beginning to weaken.

Each one is just a little thing. Over time, however, they add up. It alters the flow of conversation. I find that especially noticeable when we are with others. As someone tells us something, Kate has to stop them to ask what a certain word means. Most of them are much less common than knife, toothpaste, and glasses, but it still has an effect on our conversation.

As I have noted before, losing her ability to speak will be a low blow for me. Although the content of our conversations is far from what it was before Alzheimer’s, the sound of her voice remains. It’s certainly not the only connection between us, but it is one I value highly. Yesterday her enthusiasm for the flowers in our family room and patio and the trees behind our house was at a peak. It was a high moment for me just to see and hear her enthusiasm. She pointed out everything that was special to her. Then when she turned around, she saw them again “for the first time.”  I will miss hearing her express enthusiasm like that if she loses the ability to speak, and that is likely if she lives long enough.

Posted on

A Repeat of the Previous Two Days, But . . .
I look at yesterday as another good day, but I have to qualify my judgment. It was good in terms of Kate’s and my relationship. It was not good in terms of the increasing signs of her decline. The past three days have involved a variety of symptoms that signal that she is changing. Let me give you a sense of what the day was like.

Because she had lost sleep night before last, I let her sleep a little longer yesterday. When I went to wake her, I found that she was already awake but didn’t want to get up. My sense was that she responded like a person who was depressed. It wasn’t that she felt a need for sleep but that she just didn’t want to face the day. That is something I have observed on a number of other mornings in recent weeks.

She didn’t remember who I was, but she was cooperative when I invited her to lunch and told her I would help her get ready. Like the day before, she didn’t show any “spark” or sign of enthusiasm until she walked into the family room and saw her flowers. We enjoyed music on the way to lunch. When we arrived at the restaurant, she seemed fine in terms of her mood. She displayed no sign of depression and had a good time at lunch.

She wanted to rest as soon as we got back to the house. As she did the day before, she went to sleep. That has not been typical for her. Not only that, but when she awoke after at least an hour, she didn’t want to look through her photo books or anything else. She just wanted to continue resting. Like the day before, she was very relaxed and peaceful. She was content with no sign of worry. She was “at home.” We spoke for a few minutes. Then she rested but didn’t appear to sleep. Later I told her I wanted to show her something. I didn’t tell her what, but she agreed to look. It was a slide show of photos taken during a trip we took to Bruges and Amsterdam. I was particularly interested in her seeing these photos because there were so many taken at Keukenhof Gardens. I knew that she would enjoy the beauty of the floral displays, and she was. The problem was that she was still tired and wanted to stop after a short period of time. She didn’t go to sleep but rested another forty-five minutes before I got her up for dinner.

At dinner, she displayed more confusion. It began with what is becoming commonplace. She had trouble determining where she was to sit even though I was standing by the seat and pointing to it while I said, “You can sit right here.” When our server brought the bread, she didn’t know what it was or how to eat it. I buttered several slices and put them on her bread plate. Instead of picking up a piece of bread and taking a bite, she used her fork to pick it up. It was awkward for her as she tried to put it in her mouth. I suggested she try picking up a piece with her hand, and she did better. When the meal came, she didn’t know what the rice was, but she liked it as always.

After getting home, I asked if she would like to work puzzles on her iPad while I watched the news. That sounded good to her. It wasn’t long before she was stumped. I tried to help, but that came down to my actually putting the pieces in place for her. She tried another one but was frustrated and wanted to get ready for bed.

I turned on the debate as I prepared to take my shower. Then I asked Kate if she would like me to turn it off. She said she would like to listen a while. She didn’t watch, but she was still listening when I got out. I know she doesn’t know any of the candidates and she couldn’t understand what they were saying. I think she just found it a satisfying distraction. When I went to bed, she was almost asleep. She was very relaxed and seemed to know me.

As I reflect on the past few days, I have thought about two other friends who had spouses with dementia. I had been with them and their spouses less than six months before they died, only a few weeks for one of them. In each case, I was very surprised when they passed away. I had no idea when I saw them that they were so close to the end. Wayne Abernathy called me on Saturday. We had a long conversation during which he talked a lot about the last few months of his wife’s life. He saw it as a time when his wife simply slowed down. As he talked about his experience, it made me wonder if Kate might be at the beginning of this same stage.

I also thought of our friend Nancy Hardwick who lives in Dallas. Her husband died a few weeks after we had dinner with them in 2017. He, too, slowed down after we left. He began to sleep more and said to her, “You know I’m dying.” He was gone in less than three weeks.

I don’t pretend to know what lies ahead. I know that Kate’s mother lived with us almost five and a half years with minimal ability to speak or get around on her own. I don’t want Kate to do the same. I am coming to that place I have heard other caregivers talk about. There is a point at which you believe it is better for the one you love to die than to live. I’m not there yet. For the first time, however, I am beginning to think seriously about her passing and hoping the end will come in a way that is similar to that of Wayne and Nancy’s spouses.

Posted on

Yesterday: A Good Day

It was 7:25 yesterday morning. I had just finished my breakfast and about to take the dishes to the dishwasher. I glanced at the screen of the iPad that is connected to the video cam in our bedroom. Kate was about to sit up in bed. I went back to help her get to the bathroom. When I reached her, she gave me a smile but didn’t speak. I asked if I could help her. She said she didn’t know. I told her it was a beautiful morning and directed her attention out the window to the back yard. She must have been a little groggy because she didn’t respond as enthusiastically as usual. I asked if she wanted to go to the bathroom. She asked where it was, and I told her I would show her.

On the way, she said, “I know this is a nice place, but I want to go home.” Normally, I say something like, “I’ve got good news for you. We are at home.”  That has often worked before but not as much lately. I decided to redirect her attention and suggested we first get to the bathroom and then get dressed.

When we finished, she again mentioned wanting to go home. I told her we first needed to get her dressed. She was obviously eager to get home because getting dressed went more quickly than usual. I know that wanting to go home is a common request of people with dementia. Some authorities interpret it as an effort to escape from the symptoms of the disease. I have always been somewhat skeptical about this interpretation, but I do recognize that Kate has often said things that I believe are references to her Alzheimer’s. They include things like “I’ll be glad when this is over.” “I don’t like this. I know you don’t like it either.” Each time she says these things I try to figure out what she is talking about. I have never been able to identify anything specific. That makes me wonder if she is referring to her general feelings, difficulties, or confusion that accompany the disease. As I observe more of this, I am beginning to accept the idea that wanting to go home is, indeed, a desire to escape her Alzheimer’s and return to a place that symbolizes comfort and peace. What happened after we left the house might also support that idea.

The moment she walked into the family room, she showed her first signs enthusiasm for the day. She noticed a pot of African violets and one with orchids. She also did her usual scanning of the back yard followed by looking at her ceramic cat, the photo of her father, and the photo of our son. She experienced an almost immediate shift in mood.

We arrived at Panera just before 8:30, the earliest we have been there in quite some time. I set up her iPad and opened the puzzle app and then got her a drink and a muffin. By 9:30, she was frustrated over her puzzles and also tired. I asked if she would like to go home. She did.

As we drove to the house, I wondered if she had forgotten about her desire to “go home” or if going to our home would be perceived as going to the home she had talked about earlier. As we drove up to the house, I mentioned it was ours. She said, “Oh, yes. I didn’t recognize it at first.” That is quite unusual. She almost always does even though she sometimes thinks of as where we are staying or a house in which we previously lived.

Once inside she wanted to rest. I turned on some soft music and brought my laptop into the family room and sat with her until just before the sitter came. This was a rare time when she actually went to sleep. I wasn’t surprised because she had gotten up so much earlier than usual. I am sure she slept at least an hour. When she awoke, she looked over at me and smiled. She was very peaceful and happy. We communicate a lot with our facial expressions. I could tell from hers and her voice that all was well. She was at home.

We talked about how nice it was to relax with the music in the background. In a few minutes, I asked if she would like to look at one of her photo books. She did. I sat beside her on the sofa, and we spent ten or fifteen minutes doing that before she was tired again. She rested another thirty minutes before the sitter arrived.

I am always eager to see how she responds to the sitter. I was happy to see that she greeted Cindy with outstretched arms. It was like she had seen an old friend. As I left, I felt good knowing that she had moved so well from wanting to get out of the house and “go home” to having a peaceful morning.

The bonus of the day came when I got back. I found her and the Cindy were engaged in conversation. Kate was quite talkative. They were discussing plants. It isn’t often I see Kate as a major contributor to conversation. I think I was happier than she was.

She was tired at the end of the day and went to bed earlier than usual after being frustrated with her puzzles, but the two experiences of our morning together and her experience with the sitter made it another good day.

Posted on

We’re Always Learning and Adapting.

LIVING WITH DEMENTIA: Please quit trying to make me remember something that I don’t. You see no matter how you keep trying to twist it to make me remember, I only get more & more frustrated & still don’t remember it.  (Written by a person with dementia)

After breakfast and my walk this morning, I went to my computer. I found the message above when I checked in on Twitter. It was timely for me. With the progression of Kate’s Alzheimer’s, I have to be much more careful how I respond to her. Things that have worked in the past don’t anymore. Being a caregiver requires greater attention to more things than most of us imagine at the point of diagnosis. That brings me to what is really on my mind today – Kate and her iPad.

As I have conveyed for years, working jigsaw puzzles on the iPad has been her primary self-initiated activity since she stopped her yard work and use of her computer. I have also pointed to the increased difficulty she has with her puzzles. With my help, she has been able to continue, but we have reached the point at which she can’t follow my guidance. For a while, the primary problem was getting into the store. Once that happened, she couldn’t do anything. It was easy for me to fix but impossible for her.

More recently, the problem has been her ability to locate the pieces she needs and to figure out where to put them. For as long as I can remember, she hasn’t wanted to ask for my help. I would simply notice that she was sitting with her iPad but not doing anything. Then I would help her. My first step was to drop the number of puzzle pieces from sixteen to nine although I go back and forth. My next step was to tell her about the edge pieces. In a nine-piece puzzle there are eight of these including the corners. That leaves only one piece that goes in the center. I discovered that it was hard for her to see the flat sides that identify an edge piece. Sometimes she seemed to get it, but most of the time she seems to have completed puzzles by trial-and-error.

The past couple of days her own approach has failed her. She wanted my help yesterday, and I tried again. This is tough for me because I do know that her lack of rational thought makes it impossible for her to understand, but she wasn’t ready to give up. She still wanted me to help her. I began by trying to get her to identify the four corner pieces. She was unable to recognize them. I put them in place. Then I spread the four edge pieces so that each one was beside the empty spot where it should go. I even put my finger on the piece and then on the space immediately adjacent to it. That was also too much for her. I put them in their places.

Now there was only one empty space directly in the center of the puzzle and one piece left. First, I put my finger on the space where it should go and said, “Can you see that this is an empty space?” She couldn’t. I asked if she could see that it was green. She could. Then I showed her that the whole screen background was green and that it was covered up when she put each piece in place. She was unable to comprehend what I was telling her. Then I asked her to give me her hand. I used her index finger to touch the space. I told her she wouldn’t see the green if she put the piece in that spot. I showed her the piece and asked her to put it in the space. She couldn’t do it.

All the while, I was thinking, “You’ve been doing some variation of this same lesson off and on for weeks. Isn’t it obvious that it’s not working?” That’s why the tweet at the top of this post caught my attention. In addition, I remember and old aphorism. “If you keep doing what you’ve always done, you’ll get what you’ve always gotten.”

I decided to do what I should have done earlier. I redirected her attention, something that is often recommended for caregivers. I reminded her that we had talked earlier about looking at one of her photo books and suggested we do that. She was ready. We looked one of the books for about fifteen minutes before she said she really wanted to look more but was tired. We stopped, and she lay down on the sofa for about thirty minutes before going to dinner. When we got home, she asked what she could do. I said, “How about working on your coloring book?” She liked the idea but had a hard time knowing what to do. She gave up after fifteen minutes and wanted to get ready for bed

So what am I going to do next time? The truth is I’m not sure although I know what approach I will take. Like everything else, losing an ability to do something occurs over a period of time. It comes and goes but gradually fades away. I believe there is still more time for her to enjoy the iPad. I want her to keep trying, but I am not going to be as persistent in trying to teach her what to do. I will look more and more to other options that will be easier for her. I’ll continue to try the coloring book. She has had some minor success with it. Maybe she will catch on to it. I told her there are no rules. She can color any way she wants.

As I have noted before, we are always learning and adapting. There will be more of that in our future.

Posted on

Cards, Anyone?

At 4:00 this morning, I got out of bed for a bathroom break. As sometimes happens, I didn’t go back to sleep immediately. Shortly after 5:00, we had the following conversation.

Kate: “Hey. <pause> Hey, where are the tards?”
Richard: “The what?”
Kate: “The tards.”
Richard: I took a guess. “The cards?”
Kate: “Yes.”
Richard: “They’re in the living room.”
Kate: “Well, get them.”

I went to the living room, located them in a drawer of the secretary and brought them back to bed. I handed them to her. In the dimness of the nightlight from the bathroom, she amazed me by easily opening the box and removing the deck of cards. Then she took the top card, placed it on the bed between us and said, “Your turn.” I said, “I don’t have any cards.” She took about half the deck of cards and handed them to me. I placed a card on top of hers. Then she said, “Something’s wrong.” She didn’t say or do anything else. She had closed her eyes. I said, “Well, I think it’s time to go back to sleep.” She was already gone. Our conversation and our card game were over.