On Friday we went off to Cumberland Day Program to see if Don would accept it better than he did a similar program a couple of years ago, which he still remembers as “that place you were trying to leave me in.”
We went in the back way, avoiding most of the nursing home vistas, and Don seemed to enjoy the morning although he refused to participate in the games due to fear of failure. (I think after awhile he will be ok because the atmosphere is very kind.) He came home saying “Those are people who are trying to do a good thing,” but by early afternoon he did not even remember the experience. That is actually good news, because if he had found it traumatic in any way, he would remember.
For me, the shock was watching him in a situation where he had to function somewhat without me, and realising how very handicapped he is. He had to be helped to put sugar in his coffee by another guest (not too sure how that worked out!).
I realise I have been probably hiding the extent of his disability from myself because we are always in a familiar environment and I am always doing things for him. I feel strange, as if we are moving into a whole new experience and I need a lot of time to process it.
I wonder too if he is going downhill faster than I can keep up. It will be interesting to see what other people think after next weekend when we are having company.
I am not even sure if he is well enough for the day program and will have to discuss that with the co-ordinator next week.
Certainly we will try because he badly needs the stimulation and the experience.
I try to count my blessings every day — all the wonderful things we have that make our life easy. Good medicare, and good doctors, wonderful help with caregiving, a nice house, good friends and all the food we feel like eating. This beautiful valley to live in. So many things to be thankful for.
But at the same time, this morning i am obsessed with everything I have given up to this disease, and it is not a small list. Start with our home, our huge market garden, my island community with all its warts and flowers, vast chunks of my lifework (career) gone, the travelling I so enjoyed, both with my partner and, even more, alone. Many of my friendships left stagnant and untended. Most of the stuff we did together for recreation like fishing, exploring, hiking, camping — no, actually all of it now that a 5 block walk has become to him , “Five miles.” My solitude which nourished my soul. Even my privacy. The ability to go for a short walk or take a long shower, or run off to a friend’s house for a quick coffee and a gossip. Sacrificed. All sacrificed for this disease.
Sacrificed while my 80-year-old life partner asks, again, for me to show him how to read a clock. Again and again.
With no end in sight. No relief. No cure. Again and again and again.
Multiply this cost by the millions and millions of families afflicted by this disease. Unimaginable.
Well, the caregiver has come, so now I think I WILL go out for a walk. One small thing that might make a big difference.
This is a fascinating (well, morbidly fascinating) and up-to-date report on Alz and other dementias in the United States: 2013 Alzheimer’s Disease Facts and Figures. As well as estimates of risk of developing Alz (of great interest because probably the US and Canadian figures are similar) it also includes a look at the financial and physical cost of caregiving.
• One in nine people age 65 and older (11 percent) has Alzheimer’s disease.
• About one-third of people age 85 and older (32 percent) have Alzheimer’s disease.
• Of those with Alzheimer’s disease, an estimated 4 percent are under age 65, 13 percent are 65 to 74, 44 percent are 75 to 84, and 38 percent are 85 or older.
Sure makes it clear that our situation is not unique.