Why am I charting my loved one's Alzheimer's journey? I am charting this journey to understand it and also to remember these stages so that if others need some help, I'll have the information to help them.
Now that my loved one is either at end stage or entering end stage Alzheimer's, the illness is much sadder than any other stage. Some people told me to appreciate my loved one in the early stages as they knew what was ahead. I had no way to appreciate their words at the time since the early stages of the disease were so perplexing, but this nearing or actual end stage is very sad. It's so difficult to see your loved one unable to take care of themselves or express their needs. Yet, the resignation that comes with this stage is a bit easier than the combativeness that accompanies the stage before--a combativeness that occurs as those with the disease try to hold on to their old selves, their freedom, and their autonomy.
Another loved one died with dementia, but her death was different. She was less aware of herself slipping away. With the Alzheimer's, there's an element of grave sadness--I can feel it, and it's difficult to experience.
I sought ideas from AI, and received this information:
I've been at this stage with other loved ones with different illnesses, but with those folks, there was a greater sense of acceptance whereas with my loved one with Alzheimer's there is far more sadness than acceptance. With the others, the physical pain, but mental acuity, probably helped them to accept their fate whereas Alzheimer's seems to block some of the physical pain as well as most of the mental acuity. My loved one has lived as if he would live forever. Looking back at his life, there was a zest for living, a zest for exploration, a love of people, and a sense of strength--an "I can do anything" attitude. In so many ways that has been a a wonderful, contagious quality that brought life happiness and adventure, but now, stripped of so much of his physical and cognitive strength, that makes this stage more difficult.
As I watch this, I naturally think, Is there any way to reverse the illness and change the course of my loved one's prognosis. I've read a lot, and I don't think there's any chance to do that at this stage. Throughout the illness, the care team has explored many, many ways to slow down the disease and accommodate my loved one's spirit, wishes, and zest for life. We helped our loved one have many, many positive experiences in and around his home and in conjunction with his great love of nature, physical activity, conversation, good food, and more. But now, due to the body and mind's inability to comply, my loved one is relegated to facing the reality that the disease is winning and the end of life as he's known it and loved it is now ending.
How can I support this stage in ways that bring comfort?
So far, I've found some games and activities that bring peace and set the stage for warm conversation. My loved one is in a place that offers warm, skilled care, and we've filled his room with resources that will provide comfort. I think the best we can do at this stage is offer warmth that includes kind touches, comforting music/shows, affirmations about his good life, and prayerful actions that bring him peace.
Just as I do with my very young grandson, I'll let my loved one lead me with regard to his needs. Yesterday I asked many questions as we quietly struggled with a difficult, but colorful, puzzle. I asked, What do you need? What are you thinking about? What can I do to help you? His answers basically demonstrated that he appreciated the questions, but that there were no real answers except that to be present and to recognize the challenge that this stage brings is positive.
I will continue to explore what I can do to make this stage as positive as possible. Onward.
