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?"

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.

Heading home with plenty to shoot

Friends bucking me up while I was feeling troubled in NY

I'll be so glad to get home about midnight tonight after a week in New York and Boston researching subjects for "Gen Silent" (working title).
There is no shortage of seniors with stories to share about the unique hardships of growing old LGBT. I'll be back in less than a month to begin shooting. But now I must get ready for the DVD release of another project Trip to Hell and Back.
Trip Harting's memorial is at the end of this week and there will be a screening of the film after the service. That should be interesting. I've already had one woman who was in the film tell me that I am profiting from Trip's premature death and that she is holding her own service for Trip rather than come to this one. That hurt a lot for about an hour. I kep reminding myself that the last thing Trip said to me was that he wanted a screening at his memorial service. That's all that matters.

DIRECTOR STU MADDUX ATTENDS SAGE CONFERENCE ON LGBT AGING

My friends and documentary subjects
Bob Claunch and Jack Reavley

I've just wrapped up three-days at one of the most interesting conferences that I've been to in a long time. The subject matter sounds extremely boring- LGBT aging. But the fact that the organization SAGE had a conference on this topic sponsored by AARP (including a keynote address by AARP's president) shows how much public awareness is growing of our LGBT seniors and their unique problems.

It certainly makes me feel that there will be an audience for "Gen Silent", our current documentary on LGBT seniors going back in the closet because of a lifetime of fears and struggling with discrimination.

Two resounding conclusions out of dozens of insights:

1. Every public agency in this nation that deals with aging has a mandate to provide adequate services for ALL seniors, yet LGBT seniors are not reaching out because of lifelong fears of discrimination. Many times those fears are justified with care givers, agencies or even fellow seniores they find themselves saddled with. They are dieing earlier than their straight counterparts, lonlier and with a lower quality of life.

2. If you want a "happy old age" start early learning to adapt to new situations and have a sense of humor. Early being in your twenties!
The interesting thing is adapting is a skill that many LGBT seniors were forced to learn early on because of the amount of discrimination around them.

I have been to so many conferences that lost me to a sightseeing trip at the point that there were no interesting panels going on. SAGE in New York had so many intriguing sessions going on concurrently that this conference could have easily been spread out over the week.
Bob Linscott Stu Maddux

Thank-you to Cathy Renna of Renna Communications, the public relations organization working with SAGE for allowing me access to the conference to research and interview potential subjects for "Gen Silent" even though I had no crew or camera in hand- yet.
Also to my friend, Bob Linscott at the LGBT Aging Project for allowing me to share his hotel room. I'll be trying to find funding for this project once we have footage to show people. In the meantime, places to stay, frequent flyer miles and rides from friends have made this project possible.

Finding documentary subjects

Today I met the first two possible subjects for this doc on LGBT aging and the back-to back meetings took me from despair to hope in the course of two hours. The first man I spoke with lives alone in one bedroom of a huge house and the room smells of urine. He claims that he is dieing. He has been alone most of his life. It was an image that for better or worse I foresee happening to many LGBT people.


The second man (above) has been the primary care giver for his aging partner. He believes the only thing that saved him from suicide was reaching out for help. Today he seems vibrant and full of life.

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I’ll try to meet with both again tomorrow to learn the details of their lives and hopefully. I need to be meeting more people. I fear leaving next with only two solid situations to shoot when I come back.

The filmmaker alone

The cabin where I'm working in Jamaica Plain, MA.

I began research on my next documentary yesterday and I feel very alone. I got on a plane by myself for an overnight flight to Boston where no-one was waiting for me and set up my base of operations in a small cabin behind a friend’s house.

All that is refreshing. It’s nice to get out of the house and find solitude. What’s lonely about it is that I am here for no other reason except to create something from scratch. I’m not going to a festival for a job well done or to visit family or with my partner on vacation. I alone will make something from nothing using my skills and experience. And not knowing where it all will take me gives me pause.

I walked to the grocery store here in Jamaica Plain to buy milk, bread and cereal and will work out of this little cabin for a few days. Tomorrow I begin pre-interviewing potential subjects about aging in the LGBT community. Tonight, I am jet-lagged and sore from carrying equipment through airports and subways.

It is at times like these that I wonder, who do I think I am kidding? I’m just a wannabe filmmaker. It’s just me and a camera. No crew anymore. No network to pay me. But I quickly remember how many times I’ve had this feeling of self-doubt before and how many times I have had the feeling of success at the other end of a project. I have faith in myself.

TRIP HARTING's BLOG: Director reacts to riders' comments

TRIP HARTING's BLOG: Director reacts to riders' comments