Communion Of Dreams

September 16, 2011, 12:49 pm
Filed under: Alzheimer's, Hospice, Kurt Vonnegut, Society

I posted this Quote of the Day item as a comment on John’s Facebook thread about yesterday’s “And who will that be?” blog entry:

“Beware of the man who works hard to learn something, learns it, and finds himself no wiser than before… He is full of murderous resentment of people who are ignorant without having come by their ignorance the hard way.

— Kurt Vonnegut, “Cat’s Cradle”

Why? Well, in part because John (and most other people who heard it, including me) was understandably outraged about Mr. Robertson’s statement about divorcing a spouse who had Alzheimer’s. The simple ignorance of the statement is absolutely infuriating.

But I also posted it in recognition of something else I have learned: that I haven’t learned much about Alzheimer’s.

I should not say that. I have a book to sell, after all, one that I do honestly believe can help people. I want to see that book become a bestseller. I want it to become a reference for anyone who is in a care-giving role, and an insight into what it is like to be a care-giver for all their friends and family who are unsure how to react to their situation. I think that can really help matters for all concerned. And there are millions of people who are (or should be) concerned.

So I shouldn’t say that I haven’t learned much about Alzheimer’s. It undercuts my ‘authority’ as an author. It compromises the image of trust that I should work to build in the audience. It means that I can’t pull off the idea of being an ‘expert’ in the minds of the media elite who can help to promote our book and turn it into a success.

But I can’t lie about this. In fact, it may well be the deepest lesson to come out of the entire experience of caring for Martha Sr, then working hard for two and a half years to write this book: you do not “learn” about Alzheimer’s, or dementia, or being a care-giver by going through this.

Rather, you grow.

You grow to understand that there are few universal truths about care-giving someone with dementia. Yes, there are skills you acquire, and there are some excellent resources out there that can help. And I did learn things about the disease, and good nursing techniques, and even about myself. But I am not an expert on Alzheimer’s. Nor dementia. Nor care-giving.

You grow in ways which are not intellectual. Which cannot be readily taught, or summarized in a blog post or a powerpoint presentation or a tweet. Well, can’t be summarized by me, anyway. That’s why the book is over 400 pages long, made up of hundreds of individual entries, moments of experience, built over time. It’s growth, like a tree grows. That’s not intellectual. That’s not knowledge.

So yes, in some ways I remain ignorant. And I rage when others who have not been through this experience demonstrate their own ignorance, as Mr. Robertson did the other day.

But I hope. I hope that they will read our book. Share our experience. Maybe it will help them understand, before they go through the experience, themselves.

Jim D.

(Cross posted from the HFY blog.)

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