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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.

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More Signs of Frustration

Last night as we were getting ready to leave for a reception sponsored by the symphony, Kate had a minor panic attack. I don’t recall exactly what upset her, but she finally said, “My life is just falling apart.” This was one of the few times she has expressed such a clear recognition that she is losing her ability to do things. This morning she expressed a similar sentiment. This occurred after I had asked her if she had seen the power cord for my phone. I also noticed that she had put dirty dishes in the dishwasher with clean dishes.

Perhaps this is what prompted me to write Ken and Virginia to let them know I was nearing a decision to inform two of her cousins about her illness. I asked them if they knew any reason that I shouldn’t do so. They both wrote back that I should do what I feel is right. With that in mind, I will notify them either this week or next. I suspect that means next week because this week is pretty busy.

Ken and I also exchanged a couple of emails today. I had asked him how he was doing. I opened the door to our having a phone conversation. He wrote back and indicated that would be best. We will work that out next week. This is something that I would like to do on a regular basis. I think it would be good for both of us.

I am continuing to consider reaching out to others who are going through the same thing. Yesterday I was reminded of a friend who is also in our shoes. I hadn’t thought of contacting him since he and his wife retired to Myrtle Beach, but I will do so soon.

I believe this need to contact other people is a sign that Kate’s continuing decline is related to a corresponding need for stress relief for me.

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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.

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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.
 

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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.

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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.

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Last Day of the Cruise

I woke up at 5:25 this morning. Kate also woke up and asked the time. I told her. We both remained in bed. Just before 6:00, I got up to get ready for breakfast. I left the room just before 6:30. Kate asked that I bring her something.

When I got back to the room, she had opened the drapes and was on her iPad in the bed. I turned on the TV and put her breakfast open the table. She got out of bed and ate everything I brought (yogurt, a muffin, smoked salmon, apple juice). The she got right back in the bed. She pulled the covers over her and appears to be going back to sleep.

When I told her earlier that this is the last day of our cruise, she expressed surprise and said it had been a nice trip. She then said she would like to get back to her yard. As she ate her breakfast, she also mentioned getting back to her bed and bathrooms, etc. This follows a comment yesterday that she was going to spend time in the yard when she got home.

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Thoughts

We are at sea today, the next to the last day of our cruise. I got up before Kate this morning as I usually do. I went upstairs to the Lido for breakfast. When I got back, she was awake. She had taken her shower and was working a puzzle on her iPad. I asked if she would like some breakfast. She did and wanted me to bring something to the room. I did so. In a little while she was back in bed. I took a walk around the ship. I returned after 30 minutes to check on her. She was still resting; so I went back out. I came back in another 20 minutes. She was still in bed but working a puzzle on her iPad. I asked if she would like to get out of the room. At first she didn’t seem interested, but then decided she did. I took her up to the observation lounge. As we were about to enter, she said, “I’m hungry.” That led to my taking her to lunch instead. When we finished lunch, we went back to the observation lounge. We weren’t there 10 minutes before she said, “Would you mind if we went back to the room.” I told her I wouldn’t. I told her I might go to the gym while she was resting.

When we got to our floor, we saw our cabin attendants who told us they were just finishing one room and were going to our room next. That led us back to the Lido where we are on our iPads while they clean up our room. We’ll give them another 10 minutes or so and return so that Kate can take a rest, and I can go to the gym.

As I mentioned in an email to Tom and Bruce this morning, I have noticed an unusual decline in Kate over the past 4-6 weeks. She is quite tired, somewhat more irritable, and also more confused. All these things are giving me pause to think seriously about our planned cruise in May. I really hate to cancel, but I would not want to do anything that could result in a problem. I am particularly concerned about the possibility of Kate’s getting lost and the fact that it is difficult for her to get ready for excursions. The fact that she is no longer drawn to the evening shows means that is one less thing that she can enjoy. I still have 3 weeks before I have to commit.

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Erratic Behavior

About 35-40 minutes ago, Kate said she was hungry. I told here her we would be going to dinner around 5:30 but we could go get a slice of pizza or something else if she would like. She indicated that she would. A few minutes later she got out of bed to get ready. Instead of putting on her clothes, she got into the shower. When she came out, she said, “OK, now it’s all yours.” It was as though she thought we were getting ready for dinner not just to get something to address the immediate sense of hunger. She got her clothes and sat on the bed. Then she said she was feeling hungry. She seemed as though I had been rushing her. I hadn’t said or done anything that should have given her that impression. I told her that I didn’t mean to rush her. She held up her hand and stopped me. This is a common pattern when she doesn’t want me to say anything. Before getting dressed, she said, “I just need to rest a minute. OK?” I told her that would be fine. I am going to let her rest as long as she wants. If she takes too long, I will have her dress for dinner rather than just putting on what she had been wearing earlier. Tonight is formal dining; so it will require a little more preparation for both of us.

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Lost in St. Thomas

We caught a taxi into Charlotte Amalie around 11:00 this morning. We went to a small local restaurant recommended to us by a woman working a tourist information kiosk. Shortly after we were seated, Kate asked, “What do I usually get here?” I told her that we hadn’t been to this restaurant before. Moments later she saw a waitress passing by and said, “I remember her from yesterday.” When the waitress walked by again, Kate waved to her and said, “Nice to see you again.”

We sat next to a couple from Sacramento whose son is on the faculty at the UT. It turns out their stateroom is on the same deck as ours.

After lunch we walked around for a short time but decided we would be happier back at the ship. We caught a taxi back to the port where we went into a gift shop where I bought a ceramic coffee cup that I want to use for Dad’s ashes when we scatter them on this Friday afternoon. I told Kate I was going to the register to pay for the cup. She was still in the shop at that time. When I left the register, I didn’t see her. I then looked around the shop and still didn’t see her. That led to my going outside. A man from another cruise ship noticed that I was looking around. He jokingly said, “Lose something?” I told him, “My wife.” He went on to say that wasn’t so bad. I could always get another one. I didn’t try to explain but as I moved around the gift shop and looked outside, he kept talking. I told him that in this case, I was really worried, that my wife had Alzheimer’s. He and his wife then helped me look for her but they had to meet a group for a shore excursion of their own. After 15 minutes or so I decided to walk toward the ship thinking that because of its size, she was bound to see it and might go there. When I reached the check-in gate, she was there waiting for me. She did not seem disturbed. We haven’t discussed it at all, but it was quite a scare because she violated a rule that we have had a long time: “Stay in one spot so that I can find you.” That would have been the gift shop.