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My first job after college was coordinating activities on the dementia unit of a local nursing home. The 20 residents were in varying stages of Alzheimer's disease and related conditions. One of my residents, Helen, was dedicated to a male resident, Ralph, who had never been married. She followed him around, fussed over him and demanded to sit next to him in the lounge and in the dining room. Any resident who took her spot was in for it, and I spent a fair amount of time running interference. She even accused him once of running around on her with me, to which he gave her a befuddled look, and said, "You're crazy. She's too big for me anyway."
God bless the lack of a filter. Want thicker skin and fodder for self-deprecating stand-up? Work with folks who, if they ever had tact, certainly didn't now.
"Thanks a lot, Ralph. And by the way, you're way too short for me," I said. He laughed. He was 6'2".
Helen fell into step beside me in the hallway one day. I feared disciplinary action, but got more to the story - there's always more - instead.
"My husband was a good guy," she said. "Every Friday, he'd come home, bring me his paycheck, and we'd go shopping."
"That sounds wonderful, Helen. I need a guy like that. I bet you miss him," I said.
"Yeah, I sure do," she said. "But I don't even know where he is. I guess he's dead now." And she shuffled off down the hall.
To say that this work moved me and changed me for life is an understatement. Alzheimer's takes life experiences and scrambles them like this, leaving feelings and memories sometimes intact, sometimes not, and skewing the timeline so things that happened long ago are clear as day, and what just happened may as well not have at all.
It's often called "the long goodbye", and long it can be, lasting almost twenty years from beginning to end in the most extreme cases. This not only causes slow deterioration in the intellectual and physical functioning of the person who has it, but significant stress for family caregivers, especially and usually spouses and adult children.
November is National Alzheimer's Disease Awareness Month. President Ronald Reagan's diagnosis brought the disease into the light, and now another government figure's experience with it is in the news. Former Supreme Court Justice Sandra Day O'Connor's husband John has had AD for 17 years. He was recently reported to have connected romantically with another resident with dementia in the facility where he now lives. The story was originally reported by Veronica Sanchez on Phoenix's KPNX.
Al Tompkins at Poynter Online spoke with Sanchez about reporting this story. She said:
The question of whether this is news or "too personal" is very simple for me. The family said they wanted to bring awareness to the reality of Alzheimer’s, that they are not alone. From the moment the camera rolled, that was our objective.
A man and a woman sitting in the corner holding hands, walking around the unit watching television together, is not uncommon by any means," says Richard Powers, associate professor of neurology and pathology in the Alzheimer's Disease Center at the University of Alabama at Birmingham.
"You've got to remember that this isn't about passion," says Powers, a geriatric psychiatrist and chairman of the medical advisory board for the Alzheimer's Foundation of America. "This is about two people trying to find friendship and companionship because they're lonely and lost and oftentimes frightened."
Powers says that sex in such situations is fairly uncommon and that often these relationships begin and end with hand-holding and flirtatious behavior.
Caring Kay B linked to an essay that another famous caregiving daughter, Ronald and Nancy Reagan's daughter Patti Davis, wrote for Newsweek after the O'Connor story broke.
Sandra Day O'Connor has learned probably the most important lesson that Alzheimer's can teach—that while it can steal memory and time and possibilities, it can never steal love. Love will always be outside its reach. And sometimes those of us left behind
