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Kate’s Aphasia

I am not sure why, but among all the things that I’ve thought about, aphasia has been low on my list. I was well aware that if Kate lives long enough she would not communicate, but I didn’t think that she would begin this process now.

She has had some minor difficulty with her speech for about a year. The problem is progressing more rapidly now. Everyday words like pizza, olives, and hamburger are beginning to drop out of her vocabulary. Sometimes I joke about being her butler. She no longer knows what a butler is. Yesterday, I pointed to a fence that is being installed around a nearby hospital. She said, “What’s a fence?” At lunch, she saw her napkin and said, “What’s this?” I told her it was her napkin. She said, “What do I do with it?”

Some things are understandable. The other night we had dinner at a Mediterranean restaurant. She wanted a dessert and asked what they had. I told her they had baklava. She had no idea what that was even after I brought a piece to her. That is not something that is an everyday part of her vocabulary, so I’m not surprised that word is lost.

Quite often she knows what she wants to say but says the wrong word. A couple of days ago, she said, “I don’t want to swim.” She meant “I don’t want to sing.” While working on her iPad last week, she said, “I got two boys. She meant two puzzle pieces. Another time, she was joking with me and said, “I’m going to put it on your bed.” She meant my head. Another time, she said, “I want to yell you something” instead of tell you something. If I could remember, the list would go on and on.

It goes beyond her vocabulary. She is also beginning to struggle putting words together to communicate what she wants to say. She often starts to tell me something but stops because she doesn’t know how to express it. She looks to me to know. Sometimes I do, but often, I don’t.

So, how do I feel about this change? As you would expect, I am disturbed. Alzheimer’s began to affect our conversation very early. That was related to her memory loss. Since she could not remember things, she was left with little to say. For a good while now, she has talked more, but the conversation always revolves around a set of familiar things. We recite these over and over. Despite the repetition, I enjoy being able to converse with her no matter what we talk about. I especially enjoy seeing the pleasure she gets out of it as well. The thought about her losing this ability is one I don’t want to face.

Having said that, I stop and think about how well we have gotten along so far. It really is possible to enjoy ourselves without her having a memory. It would have been quite different if she had also lost her sight, hearing, and feelings for people and the world around her. That has carried us a long way. To adapt a phrase from “Swing Low Sweet Chariot,” I hope it will “carry us home.”

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Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

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Another Morning of Confusion

At 7:25 this morning, I was taking my morning walk inside the house while listening to All the Light We Cannot See when I heard Kate call my name. When I reached her, I found that she was having a different kind of confusing experience than she had yesterday. It was, however, like several other experiences she has had in the past. She said, “What should I be doing?” Her past experiences were somewhat different in that she has had a sense that she was supposed to be someplace or had specific obligation she had to meet. This time she didn’t mention anything that would suggest that. It was more like waking up and simply not knowing what she should do.

I explained that it was still early, and she had no obligations until lunch. I told her she could go back to sleep if she wanted to. She looked relieved and indicated she would like that. I also mentioned that sometimes she liked to go to the bathroom, but she wasn’t interested. She repeated her question several times, and I gave her the same answer. Then I asked if she would like me to sit with her while she rested. She did, and that is where I am right now.

There was one way in which today’s confusion was similar to that of yesterday. Both days she was bothered more than most days when she is confused, but she was not as disturbed as she can be when she is having an anxiety or panic attack. I am glad neither experience was as severe as it can be; however, it does bother me when she seems at all disturbed. So far, I have been able to comfort her by what I say and the way I say it. Of course, just being present for her seems to make a difference as well. At least for the time being, I am optimistic that I will be able to put her at ease. I hope I don’t have to eat those words sometime in the future.

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This Morning

I woke up at 4:30 this morning and couldn’t go back to sleep. At 5:10, I decided to get up. I like to get up at 6:00 or shortly thereafter, but I got up at 5:00 or 5:30 most of my working life, so it’s not such a bad thing.

After I was dressed for the day, I put a load of clothes (mostly towels) in the washer and was about to fix my breakfast when I realized I had forgotten to bring Kate’s iPad from the bedroom to charge it. When I walked into the bedroom, I saw that she was awake. I walked over to her and could tell she was having one of her moments of confusion. It fell short of what I would call an anxiety attack but more serious than her usual confusion.

I said, “Good morning. Could I help you?” She said, “I don’t know. Where am I?” I told her I had good news, that she was in her own home where we live. She said, “Huh.” I told her again. She said, “Who are you?” I said, “My name is Richard, and I can help you with anything you need.” She said, “What am I doing here?” I said, “This is your home. You live here.” She said, “What do I do now?” I said, “It’s early in the morning. I think you should go back to sleep.” Once again, she asked my name, where she was, and what she should do. After telling her I thought she should go back to sleep, I asked if she would like me to stay with her. She was relieved to hear me say that and said, “Oh, yes.”

I went back to the kitchen where I poured myself a glass of V8, and a cup of granola, picked up my laptop, and iPad and took a seat beside her side of the bed. I put on some soft music. She was asleep in less than fifteen minutes. I was just beginning to think about going back to the kitchen when Kate said something. I didn’t understand and got up and stepped closer to her.  She pointed to my shirt and said, “Do you want to take that with you?” I told her I did and sat back down. I have no idea what prompted her to ask me that, but she seemed very much at ease. I felt relieved. I stayed a little longer to make sure she was asleep again. Then I moved back to the kitchen. I finished the granola and V8. That will be my breakfast instead of the eggs I usually fix.

At 7:20, I heard Kate’s voice on the video cam. She said, “I wanna get out of here.” I rushed to her bedside. She was smiling. I told her I loved her and she said, “I love you too.” I asked if she was all right. She said she was. Then I mentioned the time and asked if she wanted to rest a little more. She said she did. I told her I would be in the kitchen if she needed me, and I left. It was a dramatic change from just over an hour before, but a change I like to see. Her saying “I wanna get out of here.” didn’t match the way she seemed when I got to her, but it isn’t unusual for her to say that. In fact, just yesterday, she expressed it rather emphatically. I’ll save that for a later post.

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Kate’s New Chair

About a month ago, I mentioned Kate’s increasing difficulty getting up from a seated position. I don’t have any control over the seating when we go out, but I did think about what I could do at home. She spends far more time in our family room than any other room in the house except for the bedroom. That led me to think about getting a lift chair.

We went to the La-Z-Boy show room four weeks ago and ordered one. It arrived Saturday afternoon. She tried it out while the delivery men were still here and didn’t get out until time for dinner. That was almost three hours. I demonstrated how it would recline if she wanted to rest, but she preferred to work on her iPad in a seated position. When it came time to leave, I showed her how to raise herself up to a standing position. She was surprised but not overwhelmed by the way it worked. I was the one who was impressed. Much easier than my lifting her.

Yesterday we got a chance to see how it works in the reclined position. She was ready to rest as soon as we returned from lunch. Ordinarily, she would use the sofa. This time I suggested she try the recliner. I adjusted it so that she was practically lying flat. She was comfortable and remained there for three hours. I don’t know that she likes it any more than the sofa, but I believe she is going to enjoy being able to get out of it more easily. Of course, she probably won’t learn how to work the control that has only two buttons – up and down. That shouldn’t be a problem since either the sitter or I will be there to do the job.  I know it will become more useful as her ability to get up becomes more difficult.

It’s easy to look at this as a minor thing, but it represents our moving to a stage when her mobility restricts her more than it does today. I see it as another marker on our journey. In that respect, it is like my discontinuing my morning walk in the neighborhood for one inside the house, bringing in a sitter because I didn’t believe she should be left alone, or getting a handicap placard for the car. It’s another example of the changes we experience. Thankfully, we have adapted to changes in the past. I hope we will do the same as we approach the more challenging ones that lie ahead.

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Caregivers Forget Too

Rick Phelps was diagnosed with Early Onset Alzheimer’s in 2010 at the age of 57. He is a active advocate for dementia awareness and has written at least two books. He started a Facebook group called “Memory People” on which he wrote an interesting post a few days ago. In his message he expressed his frustration with people who can’t remember that he can’t remember. He says this happens even among his own family members.

He makes an interesting point. Caregivers often get frustrated when their loved ones don’t remember what we just told them. Just this morning I read another Facebook post from a caregiver that was pulling her hair out because her mother keeps asking to go somewhere. When she asks where she wants to go, her mother says, “I don’t know.” The caregiver herself didn’t seem recognize the problem is a direct result of her mother’s Alzheimer’s. I heard about another caregiver who wrote down a set of instructions for his wife who had dementia. That can be helpful for someone who can remember there is a written set of instructions and where it is located, but that’s asking a lot of someone with dementia. That is especially true as the disease progresses.

I like to think that I am more sensitive to this issue than many caregivers, but I, too, recognize that I sometimes (often?) say, “But I just told you.” I suspect that most caregivers know it doesn’t make sense to say things like that, but it can be hard to avoid.

It makes me think about my graduate school days in social psychology. During my doctoral program, I was influenced by an advisor who was a vocal exponent of behavioral conditioning. While I have drifted away from that somewhat, I do believe much of our behavior is a function of conditioning. Of course, it is far more complex than what happens in laboratory experiments with pigeons, but I believe we develop many behaviors that are so routine that they can be difficult for us to change. The best illustration I think of is the way we respond when the power goes out. We do silly things like turning on a light switch or the TV only to realize they need power too. We can all think about our own habits that are so hard to change.

So it is when caring for someone with dementia. It calls on us to rethink everything. To make it even more difficult, people with dementia generally appear to be quite normal in most ways until very late in the disease. That fact alone leads us to treat them normally as well.

But all of this is an effort to explain what some would call caregiver “mistakes.” Even though it is hard, caregiving calls on us to change as our loved ones change. One of those changes is how we communicate. Kate is more sensitive now. I have to be very careful what I say and my whole demeanor. The first thing I do when I walk into the bedroom to wake her is to get a sense of her mood. I try to respond in a way that is most helpful. I have found that what I say and the tone of my voice can greatly influence how she responds. She doesn’t want to be pushed. She is not ready for me to be too jovial though she often responds to a gentler expression of humor. She is a little slow to get up. That requires that I try to get in sync with her and not the other way around. When I get it right, it is easier for me to get her up, dressed, and ready for the day and, to top it off, in a good humor.

I feel I have learned a lot since Kate’s diagnosis, but different things are required at every stage of the disease. That means I am always adapting and admit that I have been far from perfect. Kate is good about letting me know when I fail to do the right things. I appreciate that. When I rush her, she frequently says, “Stop. You’re going too fast. Just give me one thing at a time.” I also benefit from her own sensitivity about what she says to me. For example, yesterday morning I started to help her put her slacks on. She stopped me and said, “I can do that myself.” I said, “I’m sorry. I know I shouldn’t have acted so quickly. I wanted to be helpful.” She said, apologetically, “I know you meant well.” Working together like this is a good reason we have been able to get along as well as we have.

I continue to believe Kate and I have been fortunate, and I am cautious about passing along advice to other caregivers except at a general level. What I have done is tailored very specifically to Kate’s personality, her symptoms, and the nature of our relationship. I believe other caregivers should examine their own situations and respond in ways that address their particular, and often, unique situations.

In some ways, I think this last stage that Kate is entering is most critical because she is so sensitive. I try to retain my focus on keeping her happy and safe. I find that when I do that, everything else seems to fall in place. So far, that seems to be working.

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Emotions on High Alert

I have often said that Kate responds with much greater sensitivity to noises, especially sudden ones, hot or cold temperatures, and music. That has increased significantly in recent months and now reached a point when I have to be more careful with what I do or say. She can be easily disturbed.

Of course, there are many things that are completely beyond my control. Yesterday, our server at lunch came to our table to fill our glasses with water. Kate said, “Oh, is that for me?” The server, who is one of our regulars, teased her and said, “This is for him.” Kate was crushed, and tears filled her eyes. I jumped right in and told her the server was teasing her. It took her a moment, but she recovered without any problem.

After we had ordered, Kate asked what she was having. I said, “The trout.” She said, “What is that?” I said, “It is a fish.” The moment I said, “fish,” she looked disturbed and tried to say she was bothered by the idea of eating an animal. (She just couldn’t put the words together.) This is something that has started recently. We have had these conversations before, and she is usually able to talk about it without any emotion. With that in mind, I said that it does bother us when we think about the animals we kill for food, but I was glad that we don’t eat dogs or horses the way they do in some places. I should have known that was the wrong thing to say. She responded with tears and required a little comforting on my part to calm her.

We were seated at a table across from the bar, and a little later, the bar tender tossed something into an aluminum tub. It wasn’t a really loud crash, but it was audible throughout the seating area. Kate gasped very loudly. The bar tender apologized. There were three women seated at the table just two feet away from us. I am sure they were far more startled by Kate’s reaction than to the noise that caused it. Then Kate called to the one man who was seated at the bar. When she got his attention, she apologized profusely to him. It reminded me of the way she apologizes to me after she says something to me that she thinks is out of line.

I have also mentioned her being frightened when she doesn’t know where I am. She is particularly sensitive about that now. Even at home she can be frightened when I am in another room.

Last night, we went to Casa Bella for opera night. The program was dedicated to a 95-year-old man who died suddenly last week. Kate and I had sat with him and his wife for the past six years. The emcee had only said a few words before Kate was whimpering, and she didn’t even remember that the man being honored was the man with whom we always sit. This response is becoming typical anytime she hears about someone’s dying.

Kate has always been tender-hearted, and now her emotional responses to many things are going well beyond what I have observed before. Like other aspects of her behavior, this has not presented a problem so far. I hope it will remain that way.

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Another Good Day

Kate woke up at 8:00 in a good humor and appeared to recognize me. At least she greeted me with a smile. As we entered the bathroom, she said, “Excuse me, I don’t remember your name.” She asked just the way she would have done with a casual acquaintance. I said, “My name is Richard, and I am your husband.” When I said, “husband,” she looked surprised and doubtful. When this happens, I shift gears. I said, “Let’s say we’re good friends. How’s that?” She said, “Yes, you’re a good friend.”

While on the toilet, she asked my name at least two or three other times and again as she started to brush her teeth.

Her usual pattern would have been to return to bed, but she was ready to get dressed. I was happy about that. I had arranged for the sitter to come at 11:30 instead of 1:00 because I had a United Way meeting at noon. Her being up early provided enough time to get her a muffin at Panera, pass a little time there, and easily get back home before the sitter’s arrival. As it turned out, we got home forty-five minutes before the sitter.

While at Panera, she said, “Do you have a girl friend?” I hesitated a moment and then said, “I would say that you are my girl friend.” With tears in her eyes, she said, “That’s the nicest thing anyone has ever said to me.” She went on to say, “When we get older, I think you will be somebody like (struggling for the right word) a bank president or something.” I thanked her and said, “We are fortunate to have found each other.” That prompted her to begin a conversation (almost a soliloquy) about other people who haven’t been as fortunate as we have been. I was mostly a facilitator. This conversation lasted about fifteen minutes before she was ready to go home.

I didn’t say anything about the sitter’s coming until the doorbell rang. I explained to Kate that I was going to a meeting and that she and Mary were going to have lunch together. She gave me a dirty look and asked why I couldn’t go with them, but she didn’t look insecure. “Irritated” would be a better description.

This was the longest I have left her, almost five rather than four hours. That made me wonder what she might be like when I got home. As it turned out, she and Mary were seated on the sofa looking at her mother’s family photo book. She didn’t even look up when I walked in the room. I was glad to see that. It encourages me to see her sharing moments like this with Mary. I feel that is an important bond. Mary has been with us for over two years while the Monday sitter has changed several times. I would hate to lose her.

After Mary left, Kate and I picked up the same photo book. We didn’t get far. She was tired and wanted to rest before going to dinner. At dinner, she expressed her desire to get to bed early multiple times. Instead, she became occupied with her iPad until 8:00 when I suggested she might go to bed. She was ready. When I joined her about 9:45, she was still awake. I’m not sure when she went to sleep. I know that I dosed off and woke a little later, and she was still awake.

I don’t know whether Kate remembered my name or our relationship the balance of the day. I know that she acted as though she did and didn’t ask my name again. It was a relaxing day, another day in which we enjoyed being together. I am happy to say that.

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Relaxed and Happy, But Confused

After Kate’s insecurity yesterday morning, I wondered what the rest of the day would be like. I’m happy to say that it was a very relaxing and peaceful day. I didn’t get her up until almost 11:15. Like the day before, she got up and dressed rather quickly. She was in a good mood and didn’t show any signs of confusion except for not knowing where the bathroom is located.

As we walked along the sidewalk outside the restaurant where we ate lunch, we passed a group of women who were having lunch after their weekly game of tennis. We see the almost every week and don’t know their names, but we always speak briefly when we are either going in or leaving. Kate was especially friendly. I don’t recall what Kate said, but it was something that I suspect made them wonder a little about her. I thought about giving them one of my Alzheimer’s cards but didn’t. I may do that another time.

When our server brought our drinks, Kate gave her a nice greeting and asked her name. She has done this the past couple of times she has served us. She not only asked but tried to repeat it but mispronounced it. The she asked the server to spell it. I informed the server about Kate’s diagnosis long ago or she might have wondered about her. As it was, I think she felt the way I did and appreciated the fact that Kate was interested in trying to learn her name.

We spent a quiet afternoon in our family room at home. Kate wanted to rest as soon as we walked in. Unlike most days, she went to sleep. I’m not sure how long, but she must have slept at least an hour. I sat across from her looking through a couple of catalogs and checking email. Periodically, I was out of the room briefly while I tended to washing clothes and watering plants.

Kate woke up and started looking at the back yard. From her position on the sofa she can see the tall trees behind our house. As usual, she remarked on how beautiful they are. In most ways, she was very relaxed and seemed perfectly normal. Then she pointed to the back yard and said, “I used to walk all around this place when I was a child.”

As I have noted many times before, she also busied herself by pulling strands of her hair starting at the scalp and moving to the ends when the hair falls from her fingers. She has acquired what I see as a more problematic habit recently. She deliberately puts saliva on her fingers and wipes it on her forehead and, sometimes, her arms. She takes both of these habits very seriously and often wants my attention to watch what she is doing. She believes both of these habits do something good. I’ve never understood what.

Later as I was coming inside after watering plants, she looked at me and said, “You and I went to school together.” I said, “Yes, we did. Do you know the name of the school?” She said, “Let me think.” When she couldn’t guess, I said, “TCU.” She said, “That’s right.” As far as I could tell this was the first time during the day that it was obvious she didn’t remember who I was. Of course, she slips in and out between knowing and not knowing very quickly. She can mention her mother’s name in one moment and ask her name in the next.

She had brief scare late in the afternoon when she came out of our bathroom. I had left momentarily to take a few things to the washer. I heard her say, “Hey” a couple of times before I got to her. She was greatly relieved to see me. Since she has become so dependent on me to tell her what to do or where to go, she is often afraid when she doesn’t know where I am.

It was also a day when, most of the time, she didn’t recognize that she was in our house. That happens regularly in the morning and did yesterday. Throughout the day and into the evening, she said things that indicated she thought she was some place other than home. Interestingly, sometimes she wanted to “get out of here.” Other times she commented on what a nice place it was. As we left for lunch, she said, “I feel really sad leaving here.” I told her we would be coming back after lunch. She felt better. Later as we left for dinner, we had a rerun of the same experience.

All in all, it was a nice day despite her confusion. My own assessment of how things are going continues to depend on how she responds to that confusion. I am able to accept the decline in her memory and the confusion she experiences so long as she is happy. Much of the reading I have done on the topic of caregiving emphasizes the importance of accepting the person for whom you care as she is and focusing on making life as fulfilling as it can be. That makes life better for everyone. I believe it.