Saturday, November 29, 2008

Caring for a relative with Alzheimer's

I'm writing from my "mother-in-laws" home in Mill Valley, CA. I put the word in quotes because Joe and I can no longer get married with the passage of proposition 8. If we ever can it will be here:

This is Sea Ranch Lodge. It was our get away before having to caring for Betty, an absolutely charming 86 year-old mother who still lives in Joe's family home in the bay area. She is in the middle stages of Alzheimer's where her short-term memory simply no longer exists. We're not talking about forgetting what happened a few minutes ago. We're talking about forgetting what she said at the beginning of a sentence before finishing it. Roughly 20 times an hour she asks whether or not she still has a haircut appointment. "Haircut appointment 2pm" is on a kitchen chalkboard, in her daybook, and out of our mouths constantly. It is really not a frustration- more a rhythm.

The time together has been good for Joe and I and given me a small understanding what primary caregivers like Lawrence Johnson face. The big difference is that we get to leave.

There are other considerations, like laying out clean clothes so she doesn't wear the dirty ones by accident, finding purses, taking pills, getting Betty to finally feel that she is in a safe place at night and stops getting up from bed. It ended at midnight last night and that's pretty darn good.

I think the only scary part is that she turns up the thermostat about every ten minutes because she feels cold. We have found it up to 85 degrees this weekend and WE are the one's who forget to check it about every 5 minutes. A special thermostat is on the list to buy this Christmas!

I overheard her saying to a relative on the phone, "it must be tragedy- these people who have no-one to take care of them." Her condition will eventually worsen to the point where family can no longer provide adequate care. But at least this one weekend has not been as bad as we expected.

Even the rhythm of asking the same questions seems to stop occasionally. But after a few silent minutes I'm now in the habit of asking, "Did you know that you have a hair appointment today?"

Monday, November 3, 2008

PRODUCTION NOTES: Alexandre and Lawrence

Alexandre and Lawrence have been together 38 years

Lawrence Johnson was our first profile: a man in his early sixties caring for a partner who is in his mid-eighties. They have been together for more than 38 years.

Lawrence has been showing me how hard it is to be the primary caregiver in a gay relationship. He's been lucky enough to find a very accommodating assisted living place for Alexandre. The previous ones he looked at gave them both anxiety about merely holding Alexandre's hand or feeding him, i.e. being judged and getting a different level of care. Some of the places they looked at were simply not welcoming. But their relationship here is not only understood by the staff, Lawrence's well being is important to them as well.

Personally, I've been made aware how important it is to have a primary caregiver- someone who is solely your advocate- no-one else's. And if you think it's something that money can fix, think again. Your best hope for not dieing early and unhappy seems to be having your primary caregiver be that person who cares most deeply for you, loves you, and will go to bat for you unconditionally.
Straight people have it much easier because many more of them have children, long-term relationships or are not estranged from families because of judgements against their sexuality.
What do LGBT folks do all our lives? We learn to turn to our friends for help or simply pay someone to care for us.
But when it comes to the person who will be my primary caregiver in old age, MY advocate and protector- forget it. I now can't imagine even my best friend or anyone I could pay any amount of $$$$ advocating for me the daily, hourly way Lawrence does for Alexandre.

Lawrence is the guy who makes sure there's fresh water in ALEXANDRE's water pitcher, that ALEXANDRE's television is working properly. God forbid, if ALEXANDRE were ever neglected or abused Lawrence would be marching down the hall to the director's office. But most importantly ALEXANDRE has someone who makes life worth living.

Could a best friend or anyone you could pay maintain the same day-to-day devotion?

I happen to be reading a book on the final days of the billionaire Howard Hughes. He was surrounded by five full-time caregivers but died horribly: dehydrated, malnourished and weighing 90 lbs. You can't help but wonder if his fate would have been different had any of those people in the room been a loved one.