[Note: To read these blogs in chronological order, begin at the end: The Journey Begins.]
Friday afternoon: I’m on the Amtrak train to Boston to attend my brother-in-law’s memorial service. Alone.
Bo just didn’t want to go even though it’s his brother’s memorial. Perhaps it’s more accurate for me to say he just couldn’t go. He might have gone if I had insisted, but I ask myself what the point is when he has such a hard time doing it. There will be a luncheon for about 30 people, a very uncomfortable situation for him.
It’s so hard for him to travel now, and I’m trying to understand what goes on in his mind when a trip comes along. In this past year, we’ve cancelled three wonderful trips: a river tour of the Danube, a week in Paris, and ten days in Maine on our friends’ yacht. Our last trip – and I’m afraid it really was our last trip – was last fall — a cruise from Venice to Greece, Turkey, the Dalmatian Coast. I think he “went along with it” but would have been just as happy to stay at home. While I loved what we saw and did, he just seemed to go through the days.
The pattern I’ve watched developing is that he worries about the trip. Packing, which he has always done for himself, has become a really difficult chore. He frets about the breathing machine he uses for sleep apnea and about the distilled water he needs with it, about meds, or what clothes to take. A couple of times I found him just standing, looking lost in the midst of it all. If I try to help him , that doesn’t work either. Of course, he wants to do it himself.
In January, he actually said, “That would be good” to a suggestion for a week in Paris. But a few days later he said he really didn’t want to go. The trip on the Danube went further; I actually made the reservations. This trip seemed like a good idea because we’d be relaxing on the water – on a boat, our favorite place to be, looking at castles and cathedrals, which we both love. He agreed to it. But one morning about a week after I made the reservations, he pulled up a chair beside me in the dining room and said, “I can’t go. I had another nightmare this morning.”
The evening before he had said, “I guess I’ll have to take the machine,” and I said why not leave it at home. Now at the table he looked so stressed, so tired. When I said, “We don’t have to go, Boris. I’ll cancel the trip,” he was visibly relieved. Several times after that, he asked me about the trip that I was going to take to Europe, and each time I reminded him that neither of us was going. Interestingly, he never asked about the cost, the insurance, or any other details.
The third cancellation was this summer after our friends invited us to go on our annual cruise up the New England coast on their yacht. We’ve made many trips with them. Both of us thoroughly enjoy the water, and cruises on the CAVU were the best times of all. New England — Maine especially – was Bo’s all-time favorite, so when Richard said we’d go from Bar Harbor to Portland this summer, I was very happy because I knew Bo would love it.
But with his memory loss, Bo actually forgot about the trip. I reminded him a couple of times and he seemed OK with it, but by the week before we were scheduled to leave, I was beginning to wonder. Bo had been taking a downward turn, sleeping more, losing interest in more things, showing no enthusiasm for anything. So I brought the cruise up again, explaining that we would leave that weekend, reminding him how much he loves Maine, the peaceful seaside towns, the lobster, the comfort with our friends. Again I saw hesitancy in his actions as he looked around the bedroom and was thinking of the details. He questioned how we would drive up, who would be with us.
The next morning, when I went upstairs to awaken him, I found him just sitting on the end of the bed, shoulders sagging, head down, petting Charlie cat. “I can’t go on the boat trip,” he said, not looking up, and I could see that he had awakened with it on his mind, perhaps thought of it during the night. In a way, I was prepared for this turn of events.
“It’s OK,” I said. “ I’ll call Richard and tell him we can’t make it.” As soon as I said that, his shoulders rose, his mood changed, and he got up. He never mentioned the trip again.
And so I’ve learned another lesson about Alzheimer’s and about my Boris. Even though I may think that getting away would be a good thing for him –to be with friends, see new places, get out of the house — he really can’t deal with it now. His comfort is at home. When I analyze the situation, I think it must be too hard to be around strangers and strange places, hoping you don’t appear to be losing your mind, hoping you aren’t confused or lost, just wanting security.
And so, it’s Saturday and I’m in Boston. Even though I spoke with Bo at 8 pm last night, telling him I was in Boston and that I was meeting two of our nephews for dinner in a few minutes, and reminding him that I’ll be home late tonight, I received this email from my brother-in-law this morning: Hi Nancy, Talked to Bo at 9 PM last night and he said that you were out, returning late. I have no idea if you were headed up to Boston, but if you can’t make it, we all understand.