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Cataract Surgery? Or Not?

Kate has annual check ups with her ophthalmologist. Several years ago, the doctor mentioned that Kate had a cataract in one of her eyes. We’ve been following it since then, but it had not reached the point at which surgery is recommended. That changed in her most recent visit in December. After a brief discussion, we decided to pursue the surgery in January. Since then, I have had serious doubts as to the advisability of this procedure. Although such surgery is much easier than it used to be, it still requires the use of anesthesia that is reported to have potential negative effects on Alzheimer’s patients. We have a preliminary appointment scheduled with the doctor two days from now. I am considering canceling.

This morning for the first time I posted a question on the Caregivers’ Forum of the Alzheimer’s Association. I pointed out the following things I was considering in an effort to make the wisest decision for Kate.

1. Kate, age 77 in one week, was diagnosed 7 years ago.
2. We have maintained a high quality of life to the present time.
3. She does have some vision problems. She has a cataract in one eye and 20/60 vision in the other.
4. She has trouble recognizing people in person and in photos. I can’t be sure how much is a result of her Alzheimer’s and how much is her vision.
5. She expresses no vision problems, but I observe she is much more careful going up and down stairs or curbs than she used to be, especially at night.
6. I believe she is in the early-to-middle part of Stage 6 of 7 stages of Alzheimer’s.
7. I can’t predict the future, but my guess is that in 6-12 months having had the surgery might not matter.
8. It is possible that the anesthesia alone might effect her in a way that would reduce our quality time together.

The responses I got from my post avoid giving me a specific instruction as to what I should do, but they reinforce my concerns. I just heard from Virginia, Ken’s wife. I had asked for her thoughts. Her reply provides additional weight to my uneasiness in moving forward with the surgery.

When I consider everything, I feel the risks outweigh the gains. I would love to improve her vision but not at the cost of shortening our quality time together. I intend to cancel the surgery. Tomorrow I will contact the ophthalmologist.

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Thoughts on Future Travel

Travel has been a significant part of our marriage. When our children were 4 and 2, we made our first trip to Europe. We did it “on the cheap” as they used to say. We didn’t stay in a single place that had a full bathroom in our room. We always had to go down the hall to bathe. The remarkable part is that our son was still in diapers, and that was before disposable diapers were popular. Kate washed diapers by hand for six weeks. We spent one summer in South America when the children were 6 and 4. That was a time when I was involved with a program called Partners of the Americas. The children don’t remember much about it, but it was a great experience for us.

When the children left home, we began to travel a little more. We stepped that up a bit after Kate’s diagnosis in 2011. We knew, of course, that it couldn’t last. Our last international trip was to Switzerland in 2015, not including a Carribean cruise in January 2016. These last two trips signaled the end of our trips out of the country.

We have continued to travel longer than I expected when she was diagnosed. It seems like each trip we take now makes me believe that we are approaching the end of all but short car trips. That would include the trip we just completed. Kate, of course, does not remember anything about the trip; however, I am sensitive to the challenges it introduces for her as well as for me. I am determined to keep it up as long as it seems wise, but we are much closer to the end.

Even before our recent trip to Texas, I believed that would be our last. I wasn’t really sure we would make it until the past few months. Before we left, I was disappointed that we hadn’t been able to spend more time with Kate’s brother Ken, and his wife, Virginia. I began to think of making another trip back sometime in the spring. I’ve already mentioned this to them and to our son, Kevin. I would make it a combined trip to both Lubbock and San Angelo. One never knows exactly what lies ahead, but I believe it is important to make this one. I also believe we may be able to make an auto trip to Memphis to see our daughter and her family. That may also be in the spring. That is as far out as I am willing to project at this point.

I’m not ready to hazard a guess as to how long we will continue our visits with friends in Nashville. I intend to keep visiting as long as it is possible. I think those are important for Kate as well as for me.

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Health Update

Kate and I have been fortunate not to have had any significant illnesses since her diagnosis. Almost two weeks ago, we both got colds. They were the first this season and very mild at that. Neither of us felt bad. The primary symptoms were a post-nasal drip and a mild sore throat for me. Kate had no visible signs of her illness except for a periodic cough. As of today, we are almost completely well.

The most troublesome health issue for Kate has been her eyesight. We have been monitoring the growth of her cataracts for the past two to three years. Monday afternoon she had her latest ophthalmologist’s appointment. She is now ready for surgery to remove the cataract in Kate’s left eye. For the first time, she was tested as “legally blind” in that eye. Situations like this require consideration of the value of the surgery versus putting her through the process. For me, it was not a difficult decision. We scheduled her surgery for January 23. For some time I had been concerned about her insecurity when she walks up or down steps. This is especially true at night when she walks much like some who is blind. I have also noticed her having difficulty looking at photos of family and friends. My only question has been how much of this is a function of her AD and how much is her eyes. There is no way to determine the future, but I felt being able to see better would improve her quality of life.

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Looking Ahead

It is often said that “it’s good to live in the moment.” I believe that. I believe that Kate and I have tried pretty successfully to do that since her diagnosis; however, I tend to be a planner. I am always thinking into the future and about possibilities that might require consideration right now. I wish I could accurately predict the future, but I’ve never been very good at that. That hasn’t prevented my continuing efforts to plan ahead. With respect to Kate and our time together, I have tried to focus on the moment and found that very rewarding. I have also tried to anticipate the future with respect to a number of things that I believe are especially important. These include our annual trip to Chautauqua as well as visits with our children and grandchildren and special friends.

Long before the end of this year, I had been thinking that this Christmas might be our last one with our son and his family in Lubbock. I was never sure that we would make the trip this year, but my optimism increased as we approached the Christmas season. Our travel arrangements are made, and I have no doubts about our making the trip and that it will go well.

On the other hand, I am also more confident now that this will be our last holiday in Lubbock with our son and his family. I am not ruling out the possibility that we might make a late-spring visit, but it is hard to imagine that Kate’s situation will make it possible to go back next Thanksgiving. That would be our typical pattern, Christmas one year and Thanksgiving the next. We always rotate the holidays with our daughter’s family and our son’s family.

My reasoning about the future involves her continued decline. She is simply losing even more of her memories, and she experiences more confusion than in the past. On top of this, travel itself is troubling for her. She can’t remember where she is. I have concerns about her walking out of the hotel room at night. There are also issues of her needing to use the restrooms in airports. These issues have existed before. I have worked around them in a variety of ways, but at some point, I will need to say it is best that we not make the trip. I believe that time will occur in the coming year.

With that in mind, I am grateful that we are having such a good time during this Christmas season. There are still more things to come before we leave for Texas, and I expect our visit there will be special as well.

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Can’t Sleep

I have always been a good sleeper, but in the past year or so I have had trouble. It isn’‘t trouble going to sleep. It is waking up early in the morning and not being able to go back to sleep. This is one of those mornings. I awoke at 2:59 and have not been able to go back to sleep since then. At 3:30 I got up, put my earbuds in and listened to soft music (a playlist that I created for Kate when she has a panic attack). Finally at 4:00 I just got up and decided I would write this post.

When I wake up like this I find myself thinking about all the different obligations I have. These are heavily focused on Kate. That has been the entire case this morning. When I say Kate, I really mean the two of us. This morning I have been thinking about the challenges of keeping her entertained. She seems to get so bored. I started thinking about the senior center where Mom and Dad used to go. I didn’t think of it at the time, but I am confident now that Dad was connecting with places like that to try to entertain Mom. Of course, it isn’tjust the person who has Alzheimer’s. There is also a focus on the caregiver. With the loss of our closest friends in town, I have had a fear that the two of us will become more and more isolated. While I am the more gregarious, Kate also enjoys being with people. I can see ourselves getting cut off from close social contact. We are not likely to be cultivating new friends at this stage of our lives unless we are very deliberate about it. That is getting harder as Kate’s condition deteriorates.

So what am I going to do about it? First, I am going to pursue more regular attendance at the Wednesday evening church suppers. I am also going to check into the senior center and explore what possible opportunities they have. In addition, I believe I will start participating in the Shepherd’s’ Center programs. Finally, I will start regular attendance at the senior’s’ luncheons at church. I am hoping those outlets will be good for both of us.

I also mindful that this is a short-term fix. As Kate declines, she will be less able to get out and be involved. What I will have to do is balance the benefit she may derive from the social stimulation with the frustration she experiences because she is not fully able to enjoy, understand, and participate in these activities. Inevitably, she will drop out, and I will be left to go on my own. I have to admit that as I consider these things I am experiencing fear about the future. We have gotten along so well during the past 5 years since her diagnosis. The inevitable reality is beginning to hit me.

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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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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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Taking Stock Two Weeks After Travel

Since our return from New York, I have been unusually tired. This is something I have rarely felt before. On several occasions upon waking, I felt as though I would like to remain in bed. I must also say that I have not been sleeping as well since our return. Surely this is part of the reason. I have also wondered if I am not having a general let down after planning and anticipating our two big trips (Switzerland and NYC) that occurred so close together. All along I have looked upon both of them as the last such trips of this nature that we are likely to make. Since returning home, I have done some reflecting on this and am leaving open the possibility of at least one other trip overseas. I still think the likelihood is slim. I am certainly not going to do anything sooner than the next 6-8 months. By that time, Kate’s condition may have deteriorated to the point that it is very clear that we can’t do it. On the other hand, it may be possible to either attempt a cruise in which we don’t do the excursions but simply enjoy life on board and on shore around the port area. Another possibility would be to go to a place like Santa Fe and stay there for a week or so. Right now I am not going to plan anything. I intend to assess how well we get along at Chautauqua. I suspect I will have sufficient doubts about going back in 2016 that I won’t make plans a year in advance.

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What About Future Travel?

So what do I think about this trip and future travel?

I believe this trip was the right thing to do. We have seen and done new and interesting things. As I write, I am sitting on a lounge on a terrace overlooking Lake Lucerne. Kate is either experiencing allergy problems, or she is coming down with a cold. We had a filling lunch and ate ice cream late this afternoon. She didn’t feel like eating at all.

While the trip has gone well, I must admit that it just isn’t the same as it has been before. This relates directly to Kate’s AD, not to any aspect of the trip itself.

The fact that we are traveling does, however, make things more complicated than being at home. There are so many different things for me to be think about. On top of that is tending to Kate. While I haven’t lost her at any time, there have been brief moments in which I didn’t see her or she didn’t see me. The very thought that I might lose her has added a little stress.

In addition, the fact that she can’t understand so much of what is going on around her has meant (here and at home) that we can’t have the same kind of conversations we used to have.

Thinking ahead, I concluded early in our trip that we definitely will not do a trip of this nature again. It is simply too difficult for me to manage.

We have the NYC trip coming up in June. The fact that we will have our daughter, Jesse, and our son, Ken, along to manage the grandchildren will make this doable and enjoyable.

I suspect the trip to Chautauqua will be different this year. It might even be our last.

When I think of these things I immediately feel a sadness. Obviously for Kate but also for me. It is not only that she will never experience things in the same way again but neither will I. That may be one reason that I am lingering out here overlooking Lake Lucerne and the surrounding mountains. I really love these experiences, but they are best shared with someone you love.

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Getting Ready for a Party

When my alarm went off at 5:00 this morning Kate was irritated that it had awakened her. This is not the first time she has been irritated by it. This is a change, however, from the pattern over the years. I have set my alarm for 5:00 a.m. on Mondays, Wednesdays, and Fridays for many years. It is only recently that she has had a problem. Several weeks ago, I stopped using the alarm on my radio because I thought it was too aversive. I selected what I thought was a soft tone on my phone. I guess I need to look for something else.

As I was thinking about going to the store for half and half and a few other things, I thought about napkins. Kate walked into the room. I asked, “”What do you usually do for napkins?” Her response, “”Leave me alone.” I did. I looked in the kitchen pantry and noticed that we have white disposable napkins. I will check in at Target this morning to see if they have something with a Christmas design.

I did arrange for Kate to get her haircut this afternoon at 3:00. I took her by to see Dawn who cuts my hair so that she could get the right color. Kate has asked Ellen about Christmas pottery that she might borrow. I suspect Ellen will bring it over this morning.

There is still much to do.