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Delusions, Hallucinations, Dreams, and Paranoia

It is common for people with dementia to experience delusions, hallucinations, dreams, and paranoia. From time to time I have mentioned some of Kate’s experiences with them. They appear to becoming a regular part of our lives.

One of the most common is believing there are other people in the house. I usually discover this when she puts her finger to her lips and very softly says, “Shhhh.” Other times she makes references to “them.” I have never figured out who they are, but sometimes, like yesterday, she explains that they will hear us and “spread the word.” She went on to say how they like to gossip. I told her I didn’t think there was anything bad that anyone might say about her. She thought I was naïve. We were in the car on the way to dinner, and it wasn’t until we got to the restaurant that she was diverted to other things.

When we arrived home, she stopped to look at something on top of the dryer. She put her finger on several places. Then she told me she couldn’t catch them. I didn’t go back to look, but I didn’t see anything as we walked through the laundry room.

Something else is becoming more common. It is the little “thingies” in her hair, around her eyes, and between her toes. Running her fingers between her toes has become as much a focus of attention as pulling her hair. After she was in bed last night, she called my attention to something new. She thought “they” were on various parts of her body. She was trying to rub them off. I asked if they were painful. She said they weren’t. She rubbed her finger across her chest. Then she held her finger up and said, “See.” I told her they were quite small. Fortunately, her concern didn’t last long. I think that coincided with my starting a YouTube video of a Julie Andrews concert. She focused her attention on that. I’ve read about other caregivers using diversion techniques to solve problems like this. I am now grasping the value of that with Kate. Since memory doesn’t last long, redirecting attention often works.

Talking in her dreams is also more frequent. Prior to Alzheimer’s, I don’t recall her having these experiences. They don’t occur with any regularity. They are periodic and there have been a couple of themes. In the early years after her diagnosis, they focused on her classroom and/or library experience. She explained or gave instructions to her students. That disappeared long ago. I take that as a consequence of her loss of those memories.

More recently, her dreams have dealt with young girls or women who live in impoverished circumstances. They include her work with a program to provide education for them or to establish such a program. One of those occurred two nights ago when I got into bed. I thought she was asleep, but she started talking to me about our working together to create a program that would help people in need. I could never figure out exactly what she wanted to do but told her I would help in any way that I could. This conversation lasted fifteen minutes or so. I am pretty sure that she was awake. That makes me think about the difference between hallucinations and dreams. I suppose I would use the term hallucination if it is an experience she has when awake. The same experience while she is awake would be a dream. Whatever the definition, Kate has more of these experiences than she has before.

Most of these experiences do not bother me. The ones that do are those that disturb Kate. The most common type involves other people who might be out to do some harm to her. So far, these experiences have only involved her belief that people are saying or would say bad things about her. As we were about to leave the house last night for dinner, she was frightened by something and held herself close to me. She didn’t want to talk about. Then later while she was brushing her teeth, she insisted I remain right beside her while she brushed her teeth. It wasn’t said in anger, but fear. I wonder what lies ahead.

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Increasing Dependence

I have often commented on Kate’s dependence on me with respect to finding the bathroom, the full variety of bathroom activities, dressing, and helping with most other activities of daily living (ADLs). That continues, but I have observed other ways in which she is dependent. I’d sum it up by saying they involve my being a security blanket.

I mentioned one of those in my previous post when she didn’t want to go to lunch with the friend I had asked to take her. She has been to lunch with her on a number of occasions before and after her diagnosis, and, yet, she wouldn’t agree to go with her yesterday.

Yesterday she had a similar experience with the sitter. This one was with the sitter who has been with her more than two years. Kate wanted to rest after lunch, just fifteen minutes before Mary arrived. That’s not unusual. When I returned four hours later, she was still resting in her recliner although awake. I asked Mary if she had been there the whole time. She had. Mary said, she has encouraged her to get up, but Kate didn’t want to.

After Mary left, she asked me to show her to the bathroom. As we walked hand in hand, she expressed her feelings more clearly than she usually does. She conveyed that she liked Mary, but she said, “It’s good to be with somebody you really know.” She was relieved that I was home. When we reached the bathroom, I started to leave. Then she asked me to stay in case she needed help with anything. I frequently sense that she is at ease with me even when she doesn’t know my name or our relationship. This time, however, it seemed like she both knew me and that she was very grateful I was home.

As she finished washing her hands, I started toward the kitchen. When she came out of the bathroom, she didn’t see me and called to me. I went back to her. She was so relieved when she saw me that she was almost in tears.

We went to dinner at a nearby pizza place. Before I stepped away from the table to pay for our meal, I told her I was going to pay and would be back. I know she can’t remember, but there was no one ahead of me. In addition, The check out wasn’t too far from our table, and she has never been uneasy before. As I approached the table after paying, I saw that she had a worried look on her face and was looking all around for me. When I walked up to her, she said, “I am looking for my husband.” When she looked more closely, she recognized me. Again, it was an emotional experience for her.

Here is my own interpretation of what’s happening. She is sinking deeper into a state in which she can’t remember anything. That makes her afraid. I am the one who is most often with her and helps her. Of course, we also have a bond that is very strong after fifty-six years of marriage. When you put these things together, it’s not difficult to see why she might feel dependent. This has an advantage with respect to helping her with so many things. She still likes to retain some independence, and I think that is a good thing. Normally, however, she is usually receptive to me help. That makes caring for her much easier.

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Continued Mixture of Confusion and Happiness

Yesterday morning as I was taking my walk around 7:20, I heard Kate scream. I went to the room. She was upset but not as much as I would have expected from her scream. I am guessing she must have had a bad dream because she acted like she wanted to go back to sleep. I asked if he would like me to stay with her. She did, and I remained in the bedroom for about thirty minutes. Then I continued my walk.

She quickly went back to sleep and didn’t wake up until 10:20. At that time I heard her say, “Hey.” Her voice was soft, and I wasn’t sure that I had heard her. When I reached her, she confirmed that she had called. We talked a few minutes, and she seemed all right. Like the day before, I soon learned that she was confused. Before getting out of bed, she said, “Who are you?” I gave her my name told her that I was her husband. She reacted strongly to that, and I said, “I am a good friend, and I can help you with anything you need.”

We walked to the bathroom, but she was a little uneasy with me when she used the toilet and when she showered. She was resistant to my helping with her shower. She said, “Don’t ever tell anyone about this?”

The shower turned out to be good therapy. She enjoyed it and said she felt better when she got out. She was still guarded. She was comfortable enough to let me help, but she was also trying to keep her distance from me. A funny thing happened as I helped her dry off and get dressed. As she often does after a shower, she wanted to lie down on the bed. Then she surprised me by saying, “Don’t forget my (unclear, couldn’t think of the right word).” She pointed to her toes. She had already run her fingers in between each toe. Now she wanted me to do it.

When we left for lunch, she seemed quite comfortable with me, but I don’t think she recognized me as her husband. During lunch, I eased into some comments that would suggest we had known each other a long time. Our server told us she would be leaving to spend a semester in Berlin. I mentioned that we had visited there and that she would like it.

When she stepped away, I talked to Kate about some of the places we had traveled. I deliberately failed to mention our marriage. She seemed to accept what I said without any concern or confusion or fear that she didn’t remember these experiences. At little later, I mentioned that our son was planning a trip to see us. She seemed fine. I never asked if she knew I was her husband.

We had a very brief sad moment in the car on the way home. We had stopped at the pharmacy to pick up a prescription. As I came to the exit from the parking lot, she saw a stop sign. She tried to read it but couldn’t. I told her it said, “Stop.” She said, “What’s that?” I explained. She looked sad and said, “I don’t like to be a ‘duppy.’” She meant “dummy,” of course. I said, “You’re not a dummy.” You’re a smart gal.” She got excited and said, “Hey, and I didn’t even pay you to say that.” It’s been almost nine years since her diagnosis. She forgot a long time ago that she has Alzheimer’s, but she still knows at this late stage that she’s “not right.” She wants to be but can’t. That’s sad.

That moment really was brief. It lasted only minute. When we got home, she rested for a couple of hours in her recliner. As usual, her eyes were open off and on. I’m not sure how much she actually slept. I do know that she was quite calm and seemed happy. Halfway through her rest, I asked her if she was relaxed. She was. I told her I was as well.

A short time later, she accepted my offer to read something to her. This time I chose something different. I picked up the photo book that she and her brother had made in the early days after diagnosis. It focuses on her mother’s family who lived in Battle Creek. At the end of the book there is a section that focuses on the Kellogg brothers, Battle Creek as “Cereal City,” and the Battle Creek Sanitarium where Kate’s grandfather was a doctor. I read for about forty-five minutes. She was interested and asked me to re-read much of it as she tried to take in all the information. It had been a long time since I had read it, but I will put this on my list of things to read more frequently.

Our dinner and time at home afterwards were good as usual. With all the changes that are going on, I still find that afternoons and evenings are the most predictably good times for us. That’s a nice way to finish the day.

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Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.

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Yesterday’s Roller Coaster Ride

One week ago today, Kate had her most difficult day. Yesterday was another day, the third in a week, that Kate has experienced similar symptoms. She was very tired, confused, and troubled/sad. She was smiling when I got her up. I helped her dress without a problem.

Everything was fine until we started to leave for lunch. I walked ahead of her from the bedroom toward the kitchen. She was coming out of the bathroom and didn’t see where I had gone and called to me. I turned around and went back. She was frightened. She said, “I know you wouldn’t leave me, but I didn’t know where you were.” That set the tone for getting to the car for lunch as well as leaving the restaurant and getting in the car there. She was simply frightened but didn’t know why. As she had done the day before, she said, “Help me. Help me.” as she got in the car. She got along well at lunch.

The worst time was during the afternoon after she had been resting for almost two hours. After that, I suggested that I read to her. That appealed to her, and I read a little from Charlotte’s Web. Her eyes were open, but it didn’t appear that she was paying attention. I stopped and asked if she was enjoying my reading to her. She seemed to be in a trance. I told her I would stop if she wanted me to. When she didn’t respond, I said in a louder voice, “Can you hear me?” Although she had her eyes open, she responded as though I had waked her from a deep sleep. Then I repeated my questions. She didn’t want me to read. She was tired and wanted to rest.

I agreed to that and remained in my chair close to her recliner. She became talkative but was delusional. I told her she looked frightened. She said she was. I asked if she could tell me why. She said, “I don’t know.” I told her I would like to help her. She said, “They want to kill me.” I asked who, but she didn’t know. We had just finished a chapter in Charlotte’s Web in which they talked about Zuckerman’s intent to kill Wilbur. I suggested she might have gotten the idea from that. She acted like that might have been a possibility. I feel sure it was.

Once again, she said she was tired. I felt like I should do something to divert her attention to whatever she was afraid of. Instead I let her rest a little while. It wasn’t long before she was talking about the house. It was obvious she didn’t realize we were at home. I shifted gears and told her I would like to show her something and asked her to come with me.

I took her hand and walked her to the living room where I pointed out several things that had come from her parents’ home. She was interested but sad because she said, “I never got to know my parents.” Then she went on to say that they had had a rough life and grew up poor. She also said she couldn’t remember anything about them.

She was most interested in a fresco we had bought in Italy fifteen years ago. It was the first time in the past year or two that I recall her being taken with it, even more so than some of the things that had belonged to her parents. She wanted to sit down on the sofa. Then she began to talk about the room. She said she “liked what they had done to the room.” My reminding her that we bought the fresco did not convince to her that this was our house.

It was very clear, however, that her mood was changing. By the time we got to the dining room, she was quite interested in several other items that had come from her parents home. It wasn’t quite 5:00, but I suggested that we get ready for dinner.

She was a little bit skittish getting in and out of the car and from the car to the restaurant, but she seemed fine otherwise. When we got home, I suggested that we sit together on the sofa in the family room and go through one of her photo books that features a family wedding veil that had been purchased by one of her aunts for her wedding in 1924. She was enraptured.

When we finished, we began a conversation about our marriage and the happy times we have had. It was a touching moment for both of us. Earlier I had made several recordings. I am especially glad that I recorded this one. There is quite a contrast between this conversation and the others. She was happy again.

When we finished, we went back to the bedroom where I put on some YouTube videos and helped her prepare for bed. Everything went smoothly. She was fine, but we had had some rocky moments. It was another successful example of diverting her attention from whatever was bothering her. It also reinforces my previous guesses that when she is passive, her mind wanders. She begins to imagine things that are problematic. Yesterday, it was women who were out to get her. I don’t know how long I’ll be able to divert her. I am glad that I have a number of different things that help – music, photo books, tours around the house, conversations about family and our marriage. I can’t depend on just one to come to the rescue now. The good thing is that it is still possible to turn her around, but it’s getting harder.

I was very disturbed by her rambling during the afternoon and suspect I haven’t seen the last of this. She is entering a new phase of this disease, one I don’t like. When she bounced back, I did as well. We had an especially good time with the photo book, and the day ended on a high note.

Although I feel better now, I believe she has taken a sudden decline. I have read other caregivers accounts of similar declines. In fact, one of those was reported in a Facebook post yesterday. I also know of a former college roommate who took a steep decline and died about a month after Kate and I had been with him and his wife. I know someone else with dementia who died less than six months after I last saw her and thought she was doing quite well. While I am not ready to let her go, I would prefer that she go quickly rather than lingering for years. I have suspected the latter since she currently has no other medical conditions that might shorten her life. That, of course, is beyond my control. I will continue to focus on keeping her happy and secure.

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A Mixture of Happy and Sad

I am always glad to report the Happy Moments that Kate and I have. This is only the fourth day of the new year, but we’ve had a lot of them so far. At the same time, we are experiencing sad ones as well. I can’t say that we’ve had anything as serious as this past Monday when she was confused, frightened, and experiencing delusions off and on most of the day. She has, however, experienced some of the same things periodically all week. That has been accompanied by being tired and generally lethargic.

She is still responding positively to photo books as well as the flowers and photos in our family room but with somewhat less enthusiasm than in the past. She has also seemed more dependent on me. She wants my guidance on many things. She wants to do what is right, but she doesn’t know what that is. Increasingly, she asks me where to put her napkin. At least once this week, she couldn’t understand what I meant when I said she could put it on her lap and asked me to do it for her. She more regularly needs my help with toileting, washing her hands, brushing her teeth, and showering.

On the other hand, each of us enjoys being with the other. I have actually enjoyed not having a sitter twice during the holidays because both Christmas and New Years fell on a Wednesday, a day for the sitter. Yesterday, she was very tired when we got home from lunch. I was afraid she might not be as receptive to the sitter, but that wasn’t a problem at all. She really seems to have developed a comfort level with both of the sitters, especially Mary who comes on Wednesdays and Fridays and has been with us over two years. She does ask about me (where I am and when I will return) while I am gone. She also displays varying degrees of enthusiasm when I come back. Yesterday, she was especially happy to see me.

All in all, it seems like she has not been doing as well over the past week or so. I have noted before that mornings are her most difficult time. I find that understandable since she hasn’t had any external stimulation for eight to twelve hours. She usually recovers a short time after she is up. Now she seems to be having similar experiences in the afternoon when she rests. The other night she wanted to watch the news with me. I think it overwhelmed her brain. The next thing I knew she was having a delusion.

The last few times we have looked at her photo books, she has told me she is tired and needed to rest not too far into the album. When she is resting her mind wanders, and she imagines people and situations that I am supposed to know about. She says things like, “What time will she be there?” Or “Who else will be coming?” “Who are we meeting?” I try not to ask who because she always believes I know. I give her an answer knowing that she won’t remember what I said.

Music, whether on YouTube, or our own audio system is often good for her. I think that is because she can enjoy it passively. It doesn’t require her to try to understand or remember. She simply enjoys it. She does, however, frequently ask me who is singing. That happens a lot with the YouTube videos.

I take all of these things as signs that 2020 will be a very different year for us.

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Our Roughest Day, But, Again, a Nice Finish

Yesterday, as I walked out of the bathroom to get dressed, Kate said, “Hello.” I went over to the bed. She was uneasy. It turned out that she had awakened while I was in the bathroom and didn’t know where I was. Several times over the next ten minutes or so, she said, “I didn’t know where you were. I thought I had done something wrong.” (She is very sensitive about doing the right thing.) I took her to the bathroom. She was very unsure of herself and needed my help even more than usual. She was still emotional when I took her back to bed.

It was no surprise that she wanted me to stay with her. I got in bed with her and stayed for another thirty minutes. She seemed calm though not asleep. I told her I was thinking about getting dressed and having breakfast and then returning to the bedroom and working in the chair beside her side of the bed. She said that was fine. I was encouraged.

Less than an hour later, she started to get up. She wanted to go to the bathroom again. This time she took a shower and then rested in bed for almost another hour. I don’t recall anything unusual until just before we left for Panera. She said she felt a little sick. Then she said, “Maybe I’m just hungry.” On the way, she was talkative, but she had much more trouble than usual speaking her words correctly. In addition, I was clear about the content of what she was saying. She was delusional. She mentioned people we were meeting or had been with. I really couldn’t make sense of what she was saying. At Panera and on the way home, she exhibited the same symptoms. They were noticeably more severe than in the past. Before finishing her muffin, she took it off her plate and set it on the table. Then she picked up every crumb that was on the plate until it was spotless. This is something I have seen her do a few other times. Occasionally, she does the same thing with the table top.

I began to wonder if she might have had a TIA, but the only symptoms she had were ones that she has had before, and they didn’t seem to be like those we generally associate with a stroke. Nevertheless, I gave her four baby aspirin as soon as we got in the house. She was very tired and lay down on the sofa.

Only minutes later, the sitter arrived. I met her outside and explained what was going on and encouraged her to call me if she needed anything while I was gone. I didn’t hear from her and felt that was a good sign. Generally, by lunch problems like these would be gone. When I returned, she was resting on the sofa. Cindy told me she had eaten a good lunch and had been resting since they returned home.

After Cindy left, I asked Kate if she would like to look at one of her photo books or read something. When I mentioned Anne Frank’s diary, she expressed interest. I picked up the book and sat beside her on the sofa. I read several entries before she said she was tired. She rested about thirty minutes before I suggested that we go to dinner. She was still very tired but got up without a problem.

She was talkative on the way to the restaurant. Once again, however, I had difficulty understanding what she said. I know it involved other people that she thought I knew. She also had trouble with her words. At one point, she said something about “blee.” I finally realized she meant blue.

We sat in a booth at the restaurant, and she wanted me to sit beside her. That happens much more now. She had two cheese burritos. She still had one remaining when I finished my meal. I had cut the first one into bite-size pieces. She tried to do the same with the second one. I offered to help. Instead of eating them, she started moving them around on her plate using her fingers. It soon became clear that she was creating a “work of art.” She tried to explain, but I couldn’t fully understand except that she wanted me to take a picture of the plate of these pieces. She wanted one picture of the plate and piece alone and one with her in the photo. I obliged her.

When we walked up to the counter to pay, there were two other people in line in front of us. Kate was restless. She didn’t understand what they were doing and wanted me to go ahead of them. I explained a couple of times that we needed to wait until they were finished. The woman immediately ahead of us had opened the door to leave when Kate called to her. The woman stopped and looked around. Kate asked her if she would take a picture of the two of us. By now there was another waiting behind me. I started to tell Kate that we should let the woman go. Then I agreed. I told the man behind us to go ahead, but he said he could wait. The woman took our picture. I paid the check, and we headed home.

Typically, I would turn on the news after we are home, but I didn’t last night. It had been an unusual day for Kate. She seemed very tired. Her speech might have been a little better than it was in the morning but not significantly. I thought it was a good time to refocus her attention. I went back to YouTube. We watched a playlist we had seen before and liked. As it did the night before, the music captured her attention from the time I turned it on until I turned it off.

Even better is the fact that today (as of 2:45), I haven’t seen any of the same symptoms that she displayed yesterday.

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An Unusual Breakfast for Kate and for Me

Saturday morning Kate did something she has never done before. It was a few minutes after 7:00. I was about to fix my breakfast when I heard her say, “Hey.” I went to her and asked what I could do for her. She asked if we had anything to eat. I told her I could get her a breakfast bar. She didn’t know what that was. I took her to the bathroom. Then she wanted something to wear. Knowing it was early and that she would probably want to return to bed, I got a robe and helped her put it on.

Then I made a decision to do something very different for us – even before Alzheimer’s. I set a place for both of us at our kitchen table. I gave up the idea of cooking eggs. I opened a package of granola and poured a little into a bowl for each of us. I gave her a breakfast bar, a banana, and a glass of water. I know that we have eaten breakfast together when traveling, but I can’t recall our ever doing so at home. We didn’t have any milk, so we ate dry granola. She was quite relaxed and ate everything I gave her. As far as the food was concerned, nothing was special.  It was, nevertheless, a pleasant and very special moment for us.

Apart from our eating together, I had one other surprise. I had already poured a glass of V8 juice before she called me to the bedroom. She hasn’t cared for V8. For a long time, she drank apple juice in the morning with a cup of yogurt. I looked in our somewhat bare pantry and found a bottle of apple juice that had expired in November of 2018. Then I told her I had only given her water because I new she wasn’t a fan of V8. She didn’t remember what that was and said she would try it. I gave her a small glass, and she drank the whole thing.

There are other things like that. For example, she has always wanted butter and not oil with her bread. At two of the restaurants we frequent, the servers Know to bring us both. She recently asked me what “that” was. I told her it was olive oil and herbs, and I used it for my bread. She tried it and liked it. Similarly, she has never liked onions except in French onion soup. Now she eats onions if they are cooked with her food. She doesn’t recognize that she is eating onions although she still rejects raw onions. A similar surprise is that she sometimes eats her sweet potato fries without ketchup.

Except for a few moments of confusion, the past few days have been very pleasant ones for us. For several mornings, she has been in a cheerful mood. That has made it easier to get her up and help her with bathing and brushing teeth. I don’t mean to suggest that there has been any overall improvement in her memory, but she has not been concerned or depressed about it. She depends more heavily on me, and, for the most part, has been following my lead. It’s a bit like having a mini-vacation within the context of caregiving.

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Our Visit with Ellen

Yesterday’s visit with Ellen was different than usual. As I think about it, the last few visits have been a bit different. I looked back and know that I made a similar comment in September. Both Ellen and Kate are changing. I have come to accept that I can’t predict Kate’s behavior as well as I used to. It is only natural that our visits will also be unpredictable.

Ellen lives in a facility dedicated to memory care and is divided into three “neighborhoods,” each with about twelve residents. They are free to move about from one neighborhood to another during the day but not outside the facility itself which is locked. We usually find her sitting in her wheelchair near the lounge with a television or in the dining area. Last time and again yesterday, she wasn’t in either place or her room. We asked one of the staff if they had seen her. She left to find her. In a few minutes, she returned with Ellen. Although she has been in memory care for two years, she has always recognized us. This time she was unusually excited to see us.

We pulled her up to a table and took our seats. We had only talked a few minutes when she tried to tell us something that we couldn’t understand. I finally understood that she wanted to go back where she had been. It seemed very urgent. We offered to take her, but she wanted us to wait and said, “Back in twenty minutes.” After she was gone, I looked over at the staff member who had brought her to us and explained that she wanted to do something in the other neighborhood. She offered to go get her, but we told her we knew our way around and would find her.

A few minutes later, we found Ellen in her wheelchair beside another staff member who was on the phone. Ellen seemed eager to talk with her. The three of us chatted while the staff member continued her conversation. We were able to gather that Ellen thinks the world of this person but never learned why she wanted to see her so much right then. When she got off the phone, she told us she needed to tend to something else. The three of us headed back to Ellen’s neighborhood.

On the way, Ellen appeared to be looking for someone. I think it may have been the staff member she wanted to see before. As we passed by the clinic, Ellen stopped and opened the door and looked in. Two or three staff members were there, and the one Ellen was looking for came out. She nicely explained that she had to take care of something and walked away. At the same time, I saw that someone else was delivering ice cream to each neighborhood for their afternoon treat.

We went back to Ellen’s neighborhood and sat together at a table where all three of enjoyed our treat. We talked a little while before Kate looked at Ellen and said, “We’re going to have to leave now. Then a visitor we had seen on one other occasion stopped by and introduced himself. There was a woman with him whom I assumed was the person he was visiting. That began a lively conversation, at least between Kate and the man and the woman and me.

When we finished, Kate looked at me and said, “I want to go home.” I knew it was time. We had been there an hour and twenty minutes. That was probably our shortest. We are usually there close to two hours. We recently went over that time when the music lady was there. We were all enjoying the group singing and dancing.

The drive home was not pleasant. It rained all the way, and the traffic was heavy. As sunset approached, it seemed unusually dark. The traffic was moving at seventy or more when a message popped up on the dash, “Passenger Seat Belt Unbuckled.” I looked over to see that Kate disconnected it and was letting it ease back into its stored position. I told her she needed to put it on. She didn’t know what to do. I explained that I couldn’t drive and help her. She asked me where it goes. I put my hand on the connector and touched her leg to show her. She still didn’t know what to do. I pulled onto the shoulder and got her fastened, and we were off again. We were back in town by 5:30 and stopped at Panera for quick bite. I was glad to be off the road and home.

I don’t intend to stop our visits to see Ellen, but the challenges are increasing. Except for the initial greeting, I’m not sure Ellen enjoyed it that much although she didn’t want us to leave. I’m going to keep an open mind about the future.

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From Nashville

Yesterday afternoon Kate and I drove to Nashville for a visit with our friend, Ellen Seacrest, who is in memory care following a stroke four years ago this past August. Except when she has been in the hospital or rehab, we have visited her approximately every 4-6 months. As her condition and Kate’s have declined over that time, I have been mindful that we may reach a point when it no longer seems best for us to continue.

Thus far, I haven’t felt that the visits would end soon, but the visits over the past year have brought about a few changes. Ellen’s ability to speak has declined very significantly. We can only understand about 10% of what she says though she seems to understand us. Music has been an important part of Ellen’s life. In the early part of her career, she was a music teacher. She also served as a church choir director for forty years, started a children’s choir in Knoxville and led it for 15-20 years as well as being actively involved with the musical community. That led me to think about entertaining her by playing YouTube videos of a wide variety of musical performances. That worked well for a while, but we are doing that less now. Ellen seems to tire when passively watching the videos for any length of time.

One might think that a primary reason for reducing or ending our visits would be a direct result of Ellen’s and Kate’s abilities to benefit from these visits. That is clearly a possibility. When we began, they remembered each other without a problem. Ellen still seems to remember us without any difficulty, but Kate’s memory of Ellen has faded significantly. I have had to explain who she is for over a year, maybe two. Once they are together, however, Kate responds with some recognition even if she might not recall Ellen’s name or the experiences they shared for so many years. In this respect, it is like her memory of me. Her not recognizing me by name or relationship is quite common, but, with very few exceptions, she has a sense of closeness and a good feeling about me.

It’s not Kate’s memory or Ellen’s inability to speak that I see as the principle factors that might end or reduce our visits. Before they become issues, I believe we are going to be affected most by the difficulty of traveling. When we started, it wasn’t challenging. It was a relatively simple day trip. We left Knoxville in the morning and returned later that afternoon or evening. When Kate started sleeping later, we left later and got home later at night.

I adapted to that by leaving after lunch and arriving in Nashville late in the afternoon, having a nice dinner, and staying overnight in a hotel. That allowed Kate to sleep late on Sunday as well. Then we could have lunch and go directly to see Ellen. Our visits have been ending about 3:30 or 4:00. That allowed us to get back to Knoxville at a decent hour. We have followed this routine the past six to eight months, and it has worked well.

Our experience this time causes me to think again about future visits. The past few weeks I have felt the effects of the increased responsibilities I have for Kate. That coupled with some of the routine demands of the holiday season have kept me busy. I found that packing for the trip was more challenging. I had more things to think about and was simply more rushed than usual.

On top of that getting Kate in and out of the car and into a restaurant is not as easy as before. That was complicated this time by the weather. She is very sensitive to many things, and that includes the weather. We devote a good bit of time getting her coat and gloves on and off. We have lost lots of gloves in the past, and I have been working hard to keep them in her coat pockets when she isn’t wearing them. Even putting on gloves  is not as simple now. I have found the best way is for me to pick one of the gloves and hold it out in the exact position it should be in to put on the appropriate hand. I am zipping and unzipping her coat now as well.

Her sensitivity is not limited to the weather. When we arrived, I had arranged for a “mobile key.” When the system works, it is a nice feature. We don’t have to check in at the front desk. We go directly to our room. This was our third or fourth time to use it. We have had a problem each time. On our previous visit, we got to our room and found that the door wouldn’t open. I called the front desk, and they sent someone with a regular key that worked fine.

After our previous experiences, I still wanted to try again. I didn’t receive the key at all, so I stopped by the front desk and got a regular key. I didn’t think at all about Kate’s reaction to this. These problems have never affected her before. Not so this time. As we walked to the elevator, she complained about the hotel. That changed her mood and influenced her whole impression of the room. She wanted to know what we could do. I told her I had brought a couple of books that we might read (Charlotte’s Web and The Velveteen Rabbit), or her “Big Sister” photo book, or she could work puzzles on her iPad. She wasn’t interested. She just wanted to “get out of here.”

I suggested that we go downstairs, get something to drink, and go through her photo book. That’s what we did. We went to the restaurant and sat at a table where I could pull up a chair beside her. That worked fine except for one problem. There were a couple of young men at the shuffleboard table. She was frightened by the noise of the pucks. We moved to a table that was as far away as we could get. That helped some, and we spent about forty-five minutes looking at the album. She enjoyed it; however, it wasn’t the same reaction she usually has. Several things accounted for that – her mood, her difficulty seeing, and the noise from the shuffleboard table.

I suggested we go back to the room and get ready for dinner. We had a nice dinner. She got along well. When we walked in the hotel, she immediately commented on how nice it was. This is one of the good things one might associate with not having a memory. She was tired and worked a few minutes on her iPad before retiring for the night.

At 2:30 this morning, she woke and needed to go to the bathroom. When we returned to bed, she asked about “him” and “the baby.” I didn’t understand at first, but she said a few things that gave me a clue. These included “Did the baby come yet?” I told her it had. She asked if it was a “she” or a “he.” I told her it was a she. She was excited and added it wouldn’t have made a difference if I had said, “he.” She asked where he was. I assumed she meant the father and told her he was at the hospital. She asked when we could see the baby. I told her “tomorrow.” She wanted to know why we couldn’t see her today. I said, “It will be today, but since it was still the middle of the night, I said tomorrow.” We repeated this conversation multiple times for the next forty-five minutes or an hour. Periodically, I told her I thought the best thing we could do was go to sleep. She finally did. Until 5:00, that is. She wanted to go to the bathroom again. The baby did not come up this time. Instead she was focused on where we were and why. That lasted only a short time before we were both asleep again.

I got up just before 7:00. After I dressed, she woke up. This time I suggested she go to the bathroom. She went but was very confused. She told me she was “so glad you are here with me.” When I got her back to bed, she went to sleep rather quickly and is still sleeping at 10:00. If she doesn’t wake up sooner, I will get her up around 10:45 for lunch before going to see Ellen.

To be sure, Kate is just as confused at home. That alone would not cause me to end our visits, but there are added complications when we are out of town. I’ll be watching more closely to the way things go the next couple of trips and hope we can continue longer. I say that not only for my desire for us to stay in touch with Ellen but also because it has implications for our visits to other friends who live here as well.