New Year's: A Wish, and Reflections

I have one wish for 2010: I hope he doesn't survive the year.

Sorry if this upsets you.  My sense is that you'll either get it or you won't.  If you're bothered by it, here's something by way of comfort - my wishing for his death is about as effective as my wishing for the opposite.  If I wanted him to live for a hundred more years, I'd have exactly the same amount of traction.

As for my reasoning, it's pretty simple.  As long as he was able to get something positive out of life, I was in favor of his having more of it.  That was true even when he got pretty far along the Alzheimer's road.  For example, there were his several mid-stage years when he lived in the sea of love, and his dominant mode was to be happy and amazed that so many people wanted to care for him.  That compensated for several harsh previous decades.  That he could experience compassion was good for him and everybody else.

Now we're not there anymore.  The sea of love was a good region, and he may have had all that affection in him all along, but the reason it became dominant was that the forebrain failed, and took critical reasoning with it.  Now the pathways that produced the sea of love are long gone, and we're dealing with anger and stray dark impulses.  Awareness equals distress, often extreme distress, so, as noted, less is better.  And none is probably best.

It's worth noting for the record that I'd stand to gain financially if he died sooner rather than later.  This is why it's so hard, maybe impossibly hard, for society to come to any conclusions about old age and death.  Who could possibly sort out all the conflicting interests  - are the motivations selfish or altruistic? - and decide what's best? 

I suppose you'd have to look to professionals, and from that perspective in this particular case, at least informally, there's the beginning of a consensus.  I just got off the phone with P.  She hadn't yet read my e-mail from yesterday so we covered the same ground.  She agrees that the lithium doesn't seem to be reducing his hyperverbality or his agitation.  She's also concerned that lithium will dehydrate him, and getting him to drink is a major challenge, so that's something else to worry about.  But when Dr. G reviewed the charts this morning, he decided to maintain the lithium and reduce the zyprexa instead.  On Monday, Dr. A, the regular psychiatrist, will be back on duty and the odds are he'll reverse Dr. G's orders.  Which is fine.  I'm not against the lithium experiment - balancing the meds is mostly art, not science - but I think we're going to have to fold it.

I mentioned what H had said about sedation, and that I wouldn't have a problem with that.  "So you're OK if we sedate him a little?" 

"Yes," I said, "or more than a little." 

"Good," she said.  "I'm very glad to hear that.  Thank you."

I mentioned that he's still having the rages, and it's not as though he's enjoying the rages as a kind of free expression.

She said he wasn't - that he was upset and agitated.  And that we need to think about his quality of life.

I doubt, somehow, that he's going to thrive under sedation.  So it may be that I've just given him a push.  On the other hand, if there's an alternative, I don't see it.

I suppose we'll find out next year.

Other reflections - this is where he was two years ago, and this is where he was this time last year.  Clearly he's slid a huge way down - however bad things looked in 2007, that was high functioning by comparison.  The trend will continue and it seems obvious where we're going.

Concerning my own reactions - a year ago I was feeling stricken, because I knew that in the course of 2009, I'd have to get him into a nursing home and move him and break up his apartment.  The idea of that was hugely daunting.  The reality was every bit as hard as I'd anticipated.  And yet here we are.  It happened and it's done.  And in point of fact he's in much better hands - and because of that, I'm better off, too.

The way to go into 2010 is to be ready for the next set of things, and then do them or deal with them, whatever they are.

To all of you - thanks for traveling along with me through another year.  I hope next year takes you wherever you need to go.

See you in '10.

Comments

[julie]

I wish for this also and much like you, people would think perhaps I have ulterior motives but they don't live with it 24/7/365 so how can they know. How can our loved ones possibly be getting any enjoyment when they are so agitated and raging. I'm all for medicating/sedating as the stress on all parties cannot be a good thing. This year will bring for myself and my husband at the very least a move to the nursing home so I'm right behind you with the train moving exponentially faster and faster. I'm ready.

[Karen Tessmann]

Alan- I lost my Mother on January 23,2009 after battling her dementia for more than 6 years-most were good quality years. But then there were the years of hired companions, polish caregivers, assisted living and finally NH placement. Reading your blog is like looking in a mirror.
We too wished for some peace for my Mom as well as ourselves and prayed that she would not have to suffer much longer. The decision was made to let hospice take over once she had a serious infection we chose not to treat with antibiotics. Most people didn't understand why we would choose to let her slip away but than again most people don't have a loved one with advanced dementia. I applaud your honesty and wish you peace on your journey with your Dad. There is a group of us out here who know exactly how you feel and support you. Thanks for being a voice for those of us not so gifted in writing on the painful journey that is dementia.

[Cathy]

Happy New Year, Alan. May all your wishes come true and may you have peace. You certainly have earned it. Cheers,
Cathy

[Alan G. Ampolsk]

Thanks, everyone - I wasn't quite sure how you'd react (though I hoped fellow travelers would get it). Your understanding means a lot to me.

Here's hoping for peace for all of us and our people - whatever form that takes.