Dementia, the last taboo

Dementia, the elephant in the conversational room, has begun to lift its trunk and trumpet around. Ask anyone over 60, or almost anyone whose parents are over 60, to list the Big Fears, and dementia will be up there at the top. But precisely because it defies solution, can’t be predicted and won’t go away, it has long been among the great taboos for meaningful public discourse.

Perhaps that’s beginning to change. There are a few answers emerging as alternatives to warehousing, or being warehoused, in an institution somewhere when Alzheimer’s or other dementia takes over. Some of them make very good sense. All of them require consideration with a cold, clear eye while still sane and healthy, and that’s when the elephant in the room needs to be shoved aside so conversation can happen.

At a recent meeting of advocates for improved care and expanded choice at the end of life, a small group gathered to discuss raising awareness for Compassion & Choices, one of the leading organizations addressing these issues today. The talk quickly turned to the subject of advance directives – everyone in the room had such documents in place – and from there to dementia.

“I suppose if my Alzheimer’s gets really bad I won’t care any more,” said one, “but I absolutely hate the idea that the images my friends and family will be left with won’t be images of who I am at all.” Said another, “To me, it’s the money. I just don’t want every last penny I want to leave my family going instead to some nursing home.” And a third added, “My husband has promised to slip me poison.”

Actually, there may be better solutions, even if they remain only partial solutions. Compassion & Choices now offers a “Dementia Provision” document that may be attached to one’s advance directives, stipulating that in the event he or she winds up with dementia the signer declines all measures that would prolong life. Author/ethicist Stanley Terman is taking this concept farther (devising stronger, more explicit instructions) for those wanting to avoid prolonged life after dementia strikes. While I don’t always agree fully with Dr. Terman (except for his inclusion of a story of mine in The Best Way to Say Goodbye; I don’t get royalties) I applaud his dogged search for answers, partial or absolute, to a problem that defies easy solution. The conversation is also being aided and abetted by some good new books, including John West’s The Last Goodnights, and everything starts with the conversation.

If the conversation continues, the elephant may leave the room.

Conversations 101

Talk may be cheap, but it’s not always easy. Or done well. I’m watching Barack Obama with joy and enthusiasm for, among other reasons, his inclination to talk to anybody, anywhere without even rattling swords in the background. Closer to home, and to the issues I often deal with, talk among communities of different faiths more often than not serves to show us we all believe just about exactly the same thing; at the very least we have far more similarities than differences. In interfaith gatherings we wind up wondering why religions stir up so much pain and anguish. (It’s easy to see how; we wonder why.) Several of us hope soon to launch a social group on, so perhaps if you’re reading this you can keep an eye out for that good talking place. Also closer to home, and apropos other posts on this wandering blogspot: At last night’s meeting of Compassion & Choices, N.CA, on whose board I sit, we talked of the troubles arising from the fact that so often doctors don’t talk (or listen) to patients. (I hasten to say we have two fine, genuine-listener physicians on that board.) Working with hospice, AIDS or dying C&C clients it is sad to discover, too late, that one simple conversation — with friends, family, physicians — could have saved acres of anguish. Yesterday, therefore, I Googled myself — this is what you do if you’re REALLY bored, and a fine thing it is until you see your book offered for a distress sale price. And lo, I found it, a piece I wrote for the San Francisco Medical Society several years back titled Conversations 101. That, along with last night’s meeting and the current events of the day, prompted this ramble. The point of which is just to say what a better day we might all have if we just put up the swords, the iPhones and iPods, the computerized medical charts and even the predetermined opinions, imagined ourselves in Conversations 101, and talked to each other.

Welcome to my blog.

I picked the topic while walking in the gorgeous San Francisco sunshine with my gorgeous friend Mary Trigiani one day, talking about what ties together the erratic strands of my life. Celebrating, we said. Celebrating the beauty of this place (and other places), celebrating life and occasionally death, celebrating friends and families and faith. “You really need to start a blog,” said Mary, and thus it was born.

It was the celebration of living and dying that led me to become a hospice volunteer, later to work with AIDS patients, and eventually to put those stories together with similar stories of hope and courage to create the book Dying Unafraid. Researching Dying Unafraid led me to meet some remarkable people with Compassion and Choices , an organization I work with still (often 40 hours a week.)

It is the celebration of friends that leads me to joy.

It was the celebration of family that led to the little biographical memoir of my father Earl Moreland, Never in Doubt and leads to the serious joy — can joy be serious? Why not — of living with The Great Encourager (that’s Bud, my final husband) and keeping in touch with my flawless children and grandchildren. (Sandy is the only one with a Web site right now, unless I get into Facebooks of grandkids and I’d better not go there as yet.)

It was the celebration of faith that led me to my particular church home here in San Francisco and helped open my eyes and heart to the multitude of other truly remarkable faith communities that come together in the San Francisco Interfaith Council (new Web site under construction), the other nonprofit that currently occupies my days.

So today, with Easter approaching and the celebrations of other faith communities all around in the springtime, it seemed a good time to send this initial blog into cyberspace. I hope you’ll enjoy it, whoever and wherever you are, and perhaps post a note. (What do bloggers do, I wonder, if no one ever blogs back?)

There are plenty of other things to celebrate, despite the troubles of our battered world: books and art and music and sometimes even politics. I’ll welcome your thoughts, but I won’t promise many profound thoughts of my own (and surely not every day or even every few days! Where in the world can blog time be found?) We’ll see. And we’ll celebrate.