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My name is Laurie. I have always loved words, pictures, stories, and people. I read and write obsessively. Over the years I've kept paper journals, w...
 
 
 
 

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Alzheimer's and Another Love: How Spouses Cope

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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

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lauriewrites 5 pts

That is a sweet story. I'm glad she kept that memory of him - it's hard when relationships change, but the idea of having a "forever boyfriend" isn't so bad. :)

I've seen what the guilt can do, and have talked lots of spouses through the horror that placement can be...but sometimes they just can't give the care that's needed at home without really hurting themselves.

Laurie
LaurieWrites ( http://lauriewrites.typepad.com )

kazari 5 pts

with my grandmother. But the guilt at putting her into care nearly killed my grandfather.
He visited her everyday, and until she could no longer speak, she always referred to him has 'her boyfriend'. When conversation lagged, you could always ask if her boyfriend had visited, and she would always say yes, and smile. Even when she no longer recognised him in person, she had an idea in her head of who he was.
My grandmother was one of those for whom it was a terribly protracted illness. But even after the recognition had faded, and the words had gone, there were moments of dignity, and flashes of normality. We were all buoyed by those, especially my grandfather.