| A real-time account of Dementia Caregiving

February 11, 2016January 4, 2018

Communication Issues

We are back from PEO and lunch. As I we got close the home where today’s meeting was held, Kate spoke my cell phone number. It was not correct; so I corrected her. Then I said maybe I should write it down. She said that would be a good idea. It turned out that I didn’t have anything to write with; so we rehearsed the number several times. She also asked me what to say if someone asked her about our cruise. I told her to say, “We went on a Caribbean cruise.”“She liked that. I felt bad for her because she has never felt the need to ask my number before. In addition, her asking about the cruise suggests to me that she continues to be alert to the fact that she is less able to remember things. I know this must create a good bit of stress, discomfort, and, possibly, fear.

Shortly after 11:00, she called me to say she was ready to be picked up. I was at Starbucks. I said goodbye, and started to leave. As I was driving out of the parking lot, I received another call from Kate. She said she was sorry, but the program just began. I turned and went back to Starbucks where I waited for another call that she was ready. When the call had not come after 12:00, I decided to leave and head toward house where the meeting was held. I figured Kate would probably call while I was on the way. When I arrived, all the cars were gone. I went to the door and rang the bell. I discovered quickly the meeting had been over for some time but Kate had not called. The hostess said encouraged Kate to call me, but Kate said she had called me and that I was on the way. It was 12:50 when I arrived. My guess is that the meeting had been over more than an hour. It had been a long wait for her, and she was not happy with me. She thinks I said I was coming but didn’t. The truth is that the communication was unclear. I thought she would call me back when the meeting was over. She thought that I would come ahead.

February 11, 2016January 4, 2018

Short-Term Memory

This morning Kate has a PEO meeting. Last night I mentioned it and where it is going to take place. Before she went to sleep (early again), she asked if she could use my computer this morning. I told her she could but wondered if she had a problem with hers. She then said, “I guess I could use mine.” I believe she thought hers was not working. This has happened before.

This morning I reminded her about the meeting. That was early – around 6:00 a.m. At 7:15 after my walk, I told her that she had 2 hours until we leave. Around 8:00, she came into the kitchen dressed in her sweats. I reminded her when we were leaving. She asked, “Where are we going?” I told her. At 8:30, she was still not dressed. I told her I was going to get ready. She told me goodbye. When I told her she was going with me, she asked, “Where are we going?” I told her and reminded her that we would be leaving about 30 minutes. I checked on her at 8:50. She was still not dressed. Once again she had forgotten that she had PEO. Three minutes ago she called to me and came into the family room. She was carrying her laptop and her iPad in her arms. I asked if she thought she would need those. She looked puzzled and asked, “Where are we going?” I told her. She had forgotten yet again.

February 9, 2016January 4, 2018

The Rest of the Day

I started the morning early thinking about Kate and the future. I am now ending the day feeling better than I did at that time. However, not everything has been encouraging during the day. The good news is that when she got up this morning, she walked into the kitchen smiling. It was the kind of look I have grown accustomed to over the past 52+ years.

After my morning walk, I worked at the computer in the kitchen for a good while. Some of that was writing the earlier post today. Kate had looked at the memo pad I keep on the island and saw that this was the day for our houseskeeper to come and also the day we were going to visit her friend, Ellen in Nashville. I reminded her of these things. About 9:30, I thought I should check on her since I had wanted to leave shortly after 10:00. When I went back to her office, I discovered that she was still in her nightgown. She was sorting through and hanging up clothes that were on her bed. I think they must have been from the cruise. I told her we were going to leave in 35 minutes and that I needed to mail a couple of letters and would be back after that. I bumped into a friend at Starbucks and chatted a few minutes with him; so I didn’t get back to the house until almost 9:50. She was still in her nightgown. She asked how much time we had. I told her 10 minutes thinking that 15-20 would be all right. About 15 minutes later, she came out dressed for the day. I was surprised she was ready. She seemed a bit panicky. She said something about my being angry with her for being late. I assured her (unsuccessfully) that I was not angry. It was no use. She started crying. She told me she was trying so hard. She repeated that she knew I was angry and was just trying to be nice. What she didn’t know is that I had called our friends whom we were to meet at at 11:30 and told them we were running late but would be there. In other words, I wasn’t angry at all. In fact, although I often find myself frustrated, I don’t believe I ever get angry with her. I genuinely believe I am understanding of why she behaves as she does. That makes all the difference in the world. At any rate, we left in the car with her feeling really bad about making me angry. We didn’t talk the entire way to Nashville. I put on a playlist of music I have created just for moments like these. I have used it quite a number of times. It played all the way.

After parking the car, we walked to the restaurant. Kate left her coat in the car, and it was windy and 41 degrees. I said, “Don’t you want your coat?” She looked at me angrily and said, “”No.” We hadn’t walked too far when she said she needed her coat. I gave her mine. Although I had a sweater, it was pretty chilly. When we got in the car after lunch, I asked her when she was going to give me back my coat. Once again, she looked at me angrily. I didn’t pursue the subject, and she wore the coat until we got home. By that time I feel sure she didn’t even remember that she was wearing my coat. She was in a good humor, however. At 7:50 p.m., she told me she was going to bed. I told her I loved her, and she said she loved me. She was relaxed and very comfortable in bed. All is well.

February 9, 2016January 4, 2018

Problem Sleeping

I woke up at 3:16 this morning and was unable to get back to sleep. I finally got up about 4:45. My mind has been absorbed with Kate’s deteriorating condition. I am working harder to keep her entertained. I find it both challenging and discouraging. For the first time since I have been keeping this journal I find myself recognizing that she is entering that stage of Alzheimer’s that people most commonly associate with the disease. She is still able to hide her illness from most people, but she is becoming more detached from life than in the past. She hasn’t gone to church in a couple of months. I passed up the past two symphony concerts because I knew she would not be interested. I have declined a couple of other engagements because I knew it was not her thing.

More importantly for me, her whole mood has been changing over the past 2 months. I don’t see any spark of joy at anything. She can get up for certain social situations. She did that in Miami. She displayed some of that on the cruise but not much. She just doesn’t seem to be happy. I keep looking for the right word to describe her. She is listless, forlorn, bored.

At the same time, she is also more irritable with me. She snaps at me when I haven’t done anything to justify her reaction. She sees this herself I am sure. I say that because she often follows such reactions by telling me she loves me or grabbing my hand and holding it fondly.

I also see more moments in which she has imagined things that haven’t happened. Late yesterday afternoon I walked into our bedroom, and she said, “I am so angry.” I asked her why. She said because someone had said something (I don’t remember what that something was, but she was specific.) about her mother. When I questioned her further, I learned that she thought I had told her about someone who had said this about her mother. I assured her that I hadn’t said anything like that. She was puzzled and finally said, “Maybe I imagined that.” She has had several of these situations in the past week.

February 6, 2016January 3, 2018

Back Home One Week

Now that we have been home from our cruise a full week, I feel even more strongly that it is easier for me to take care of Kate here than on a big trip like our trip to Switzerland last May or the cruise we just finished. This isn’t because her symptoms are any less. It is because neither of us has to think about as many deadlines. In addition, I think the fact that we are in our own home where there is a certain degree of comfort means less stress for both of us. In some respects this seems obvious. After all at any point in our lives, we find that we have more adjustment to changes while we travel as opposed to staying at home. On the other hand, I had thought that being on a cruise would be easier than it was because we (I) knew (1) the meals were taken care of and (2) that there were opportunities for many diversions to address Kate’s boredom and (3) the ship offered attractive places for us to relax. All of that is true, but her Alzheimer’s has reached the point at which none of these things seems to have great appeal. I have not contacted the cruise line to cancel our trip in May, but I intend to do so this coming week.

Here are a couple of experiences today that illustrate where we are at this point. Each Saturday morning I work on my Sunday school lesson. After taking my morning walk and checking email, I prepared myself to take care of my lesson. As I started, I heard her call for me. I went to the back of the house. She was heading my way dressed in sweat pants that a church friend had given to me because they the legs were too long for him. She also had a sweat shirt on over another shirt. This is the kind of attire that she typically wears when she is outside; so I made the assumption that she was on her way to work in the yard. Then she asked, “Where are we going?” I asked her if she wanted to go someplace. She said she wanted to go to Panera. I told her that would be fine and asked if she wanted to change clothes. She said, “No.” I told her I would need a moment to get ready. She said that would be fine and went outside. When I was ready (in a few minutes), I went outside to ask if she wanted to take her computer as well as her iPad. She said she would; so I went back in the house and got both for her. I also got cups for both of us.

After we had been at Panera for about 10-15 minutes, she said she was ready to go. She hadn’t even gotten her computer and/or iPad out of the case. I told her that would be fine, and we went back home where she immediately started working in the yard. At 12:30, I went out to get her for lunch. She was surprised at the time and said she would be right in. When she hadn’t come in by 12:50, I looked out the kitchen window and saw her sitting down on the ground working in the flower bed along the drive way. I went out again. It appeared that she never remembered I had been out before because she was surprised again at the time of day. She came in 10 minutes later.

February 2, 2016January 4, 2018

Enjoying Home

Today marks our third day at home after the cruise. I continue to question my plans for a Mediterranean cruise that I booked for May. I have serious doubts though I haven’t done it officially. I will probably do it this week. Being home has been much more relaxing. I haven’t felt the same degree of stress to take care of Kate. She also seems to have enjoyed being here. We have been back to some of our favorite restaurants. We went to Lowe’s after lunch on Sunday. She bought another $145 worth of plants. Then she worked in the yard for four hours. It was good for her.

We still don’t talk directly about her Alzheimer’s, but occasional oblique references occur. Today, for example, she remarked about something she had done. I said, “”Don’t we have fun?” She said, “”Well, I wouldn’’t go that far.” I said, “”At least you keep your sense of humor.” This afternoon she couldn’t find her iPad. I found it. She was so relieved. She said, “”At least I didn’t lose it.” She said it seriously, not as a joke. It conveys to me how much frustration she experiences over misplacing things all the time.

I have noticed other signs of her acknowledging that she looks to me to see if it is all right to do things in much the way a child might do. One of those occurred yesterday when she had picked out something to wear. She asked, “”Is this all right?” I told her it was perfect.” Tonight as I was getting ready to take a shower about 8:30, she said, “”I am going to bed. Is that all right?” I told her she could go to bed anytime she wants.

January 29, 2016January 5, 2018

Disembarking in Fort Lauderdale

We disembark in Fort Lauderdale this morning. The schedule calls for us to leave the ship between 9:00 and 9:15. I have arranged for a rental car at the airport at 10:00; so that should give us sufficient time to drive to Miami for lunch with Gary and Jeanette, and Larry and Margaret. Following lunch we will scatter Dad’s ashes in an area near the beach where he and Mom used to go around the time I was a year old. The plan is to have a break after that. I know that Kate will want to rest for a while. At 6:30 or so Gary will pick us up for dinner.

It is a little ironic that our last full day on the ship turned out to be one of the easiest. It almost made me want to commit to the cruise in May. It is possible, however, that it was easy because we did not get off the ship, and we had no special obligations. We were pretty active but not rushed.

The only definite obligation was to get our luggage packed and outside our door before going to bed. During the night the cabin stewards picked up the luggage and have stored it for delivery to the terminal for us. This was not a big chore. I did most of mine before dinner. Kate chose to do hers after dinner when she is usually ready to hop into bed. Before I left for the evening entertainment (once again she preferred to remain in the stateroom), I got out her suitcase and set aside the clothes for her to wear today. She picked them out but was confused about what she was going to wear after doing so. That led me to put them with my clothes in my closet. When I got back from the show, she was in bed and almost asleep. She hadn’t finished packing. I said something to her about her not finishing, and she got up to finish. I don’t know why I didn’t just finish for her. It would have been easy for me to do. This is just another example of my vacillation between doing everything for her (something she resents) and not doing things that I should.

I woke up just before 5:00 and have finished breakfast where I am writing this post. She awoke before I walked out the door. She mentioned coming with me. I asked if she would like me to bring her something. She opted for that. That is probably better for both of us. I won’t have to rush her, and she won’t suffer any stress. I’m not sure when we have to be out of our cabins, but I do know that they indicated we could wait in any of the public areas on the ship.

8:17 a.m.

We are now in the Lido where Kate had a little more smoked salmon and orange juice. I couldn’t find her sweater this morning. I am hoping she packed it with her luggage. She also borrowed a pair of my socks last night. This morning she could only find one sock.

She is in a good mood and is not exhibiting any of the signs of exhaustion that are common at this time of morning. When I said something in the stateroom about when we might be vacating our room, she asked why. I told her this was the end of the cruise and that passengers would be getting off and new passengers getting on.

While sitting here in the Lido, I said something about all the anticipation of the cruise, and now it was all over. She said, “It seems like just two days.” I agreed. Then she said, “No, I really mean it. It seems like just two days.” I am sure that for her this is quite true. It is another sign that the trip has not been stressful for her. I am glad of that. I am still not sure that given how she seemed to be reacting to everything that it is worth taking the one in May. I will work hard to make that decision soon.

January 28, 2016November 19, 2017

Getting Upset With Me

As we were getting ready for our last dinner on the cruise, Kate got upset with me. She said, “I guess I’ll have to wear my tennis shoes.” She gave me a dirty look. She had given me a clue about this yesterday. She told me that she wanted me to ask her before helping her with anything. She specifically mentioned packing her suitcase and indicated that it was something she was capable of doing. I didn’t know what she was talking about and told her I would try to do better. This afternoon she followed her mention about wearing her tennis shoes to dinner by saying she didn’t know why I took her other shoes out of her suitcase. She told me it was just stupid. Then I understood that this is one of those occasions when she believes I’ve said or done something that I have not said or done. I made no effort to contradict her. It would have been foolish and might even have made her feel bad about herself. The truth is that she only packed her tennis shoes for the trip and no other shoes. That meant that even on the formal nights when she was more formally dressed, she wore her casual (not really tennis) shoes.

January 28, 2016November 19, 2017

A Pleasant Day at Sea

Today has been a very pleasant day. It is interesting that it comes at a time when I am seriously considering cancelling our May cruise. As I think about it, I don’t see that Kate is enjoying the cruise sufficiently for me to go through what it takes to have a successful trip. I find that I have to constantly keep her in mind all the time. This, of course, is not different than at home. The difference is that I have to coordinate going up and down stairs, ordering meals, handling conversations, seeing that she is properly dressed, and that her hair is combed, clothes cleaned etc. All of these things are simpler at home. I would hesitate to do all that is necessary if I were convinced she is getting sufficient pleasure out of the trip. It is clear that she says she is enjoying the trip, but she seems to get the most pleasure out of resting in our room.

She has had a pretty full day today. We got her something to eat around 9:15. We went to a movie at 10:00. We went to lunch after the movie. After lunch she wanted to rest. About 15 minutes after she got in bed, I discovered that she had a Swedish massage scheduled for 1:30. I got her up for that. She finished around 3:00. She was thirsty; so we went to the Lido for something to drink. Then it was back to our room where she got into bed. She just woke up and is on the iPad now. In another hour, we will go to dinner.