Jim and Fred went on a date 33 years ago. They fell in love and moved in together. They knew early on that they had something special. Jim told me that Fred was his first love. “When I met Fred I was 25 and he was 55,” he said. “Our age difference was a concern, but it also had advantages. He helped me come to grips with being gay. Being in a relationship with Fred helped me to become a more self-aware person and more comfortable with myself. He opened me up to my emotions.” The age difference heightened Jim’s awareness of how much time they might have together. “I didn’t hold back my affection toward Fred, so he would always know how much I loved him.”
Fred knew how to enjoy life and have fun. He loved entertaining people by telling stories and making people laugh. He was warm and generous, a guy with a big personality. Jim was the serious one. He said, “We balanced each other. This is how we were good together.”
They enjoyed meeting people, traveling and having adventures. Weekends were filled with attending events, going out to the movies, to the theater, or dining out in restaurants around San Francisco and the Bay Area. They loved to hold hands and take long walks around the city, where they felt safe and at home.
Fourteen years into their relationship, Fred started to have trouble remembering things. Gradually, his personality began to change. Fred, always cheerful and upbeat, became uncharacteristically negative and anxious. Jim was confused by the changes in Fred’s moods, and angry and hurt when Fred became accusatory and paranoid. Jim knew something was wrong with Fred, but he didn’t know what it was. Neither of them knew whom or where to turn to for help. Like so many gay couples, they did not feel they could turn to their families for support. As a gay couple, they did not feel confident that service providers would understand their relationship.
When Fred became paranoid and accused Jim of trying to poison him, it was too much for the two of them. They broke up. But Jim never felt right about the break up. They continued to stay in close contact. Finally, at Jim’s urging, Fred went for tests. He was diagnosed with dementia, and given medication to treat his depression and paranoia.
At first, the diagnosis was hard to accept. It took Jim some time to come to terms with the fact that not only would Fred’s condition not improve, but also that his abilities would deteriorate. He wondered if he could, or even wanted to, manage all of this. But in the end, he was relieved finally to have an understanding of what Fred was dealing with, and why he had changed.
Two years after their break up, they got back together. They could still travel, enjoy going out together, and being sexually intimate. Jim says, “I wanted him to live as full a life as possible. We were able to enjoy so much together—that hadn’t changed for either one of us. We had a beautiful time together. I know our love kept him healthier than he would have been on his own.”
Over time, the dementia progressed, and Fred became increasingly more dependent. As Fred’s condition deteriorated, Jim provided more and more care. He assisted Fred with dressing, bathing and changing. He wanted Fred to stay as active and independent as possible. But Fred’s incontinence became increasingly challenging. Eventually, Fred could not be left alone, and needed more care than Jim could provide. Fred moved into a memory care facility where Jim now visits him 3 to 5 times a week. “Fred is not very verbal at all now. This is a great void. I get lonely at times.”
“If I had known there were resources available for LGBT people, I would have sought them out,” Jim said. “That would have been a great help. Losing him slowly over time was hard, and from time to time I would be overwhelmed.”
He continued, “It would have made a huge difference to have had an early diagnosis to understand what was happening to Fred and to know what to expect and make a plan. And there would have been someone for me to talk to. I wouldn’t have been so alone. But I am grateful for my time with Fred, and wouldn’t change any of that.”
Today, there is greater acceptance and awareness of LGBT people and ourissues and concerns by senior service providers. If you are providing care to a person with Alzheimer’s or some other form of dementia, you don’t have to be alone. Nationally and locally in the San Francisco Bay Area, there are organizations, like Openhouse, and agencies that can help you and your loved one find the support and information you need.
A groundbreaking all-day conference for LGBT caregivers and their loved ones living with dementia will be held in San Francisco on February 20. The conference, entitled Prepare for the Changing Horizon: Dementia Awareness and Caregiving for LGBT Older Adults in Diverse Communities, is being sponsored by Openhouse, Alzheimer’s Association of Northern California, Stanford Geriatric Education Center and Family Caregiver Alliance.
According to a recent report published by the San Francisco LGBT Aging Policy Task Force, LGBT older adults have unique barriers to accessing information about and services for Alzheimer’s and dementia care. This program will present the experiences and perspectives of LGBT caregivers and community members confronting these challenges, and will discuss how the provider community can best respond to their needs. Speakers will focus on person-centered assessment, diagnosis, and treatment of dementia in diverse LGBT older adults; LGBT caregiver well-being; practical approaches to communication; family and cultural issues related to team-based health care; behavioral and other alternative interventions for dementia-related symptoms; and strategies to identify, access, and use effective healthcare/social service resources in mainstream and LGBT-welcoming institutions.
You will want to save the date:
Prepare for the Changing Horizon: Dementia Awareness and Caregiving for LGBT Older Adults in Diverse Communities
Friday, February 20, 8:30am–4:00pm
The Milton Marks Conference Center Hiram W. Johnson State Office Building, Lower level
455 Golden Gate Ave.
San Francisco, CA
Registration is required, so please go to the following website if you wish to attend:
http://app.certain.com/profile/form/index.cfm?PKformID=0x19153538ef8
For further information, please see my earlier article for the San Francisco Bay Times, “Taking Alzheimer’s/Dementia Out of the Closet.” http://sfbaytimes.com/taking-alzheimersdementia-out-of-the-closet/
Dr. Marcy Adelman, a clinical psychologist in private practice, is co-founder of the non-profit organization Openhouse and was a leading member of the San Francisco LGBT Aging Policy Task Force.
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