Deep Winter Friday Round-Up

I can’t be in a clinical trial because I have a magnet in my head. I wrote about this a few days ago – being offered the opportunity to be in a research project testing the efficacy of an Alzheimer’s prevention drug. But regular MRI’s are part of the research design and because there is a magnet in my head that attaches to the magnet on my cochlear implant receiver, my head would blow up. So that’s the end of my lab rat career.

I decided not to find out if I have the dreaded Alzheimer’s gene. It’s knowable without much effort but it seems ill-advised to me, like buying a cemetery plot and having picnics there all the time, afraid to wander too far from the plot, you know, lest I get lost and can’t find my way back to my final resting place. Too bleak, in other words.

It is a terrible thing that it’s possible to continue a conversation while the TV news is talking about another mass shooting. How is it possible that we could become so inured to violence that the murder of five people becomes background noise? I feel it a moral duty to be outraged each time and not let such horror become pedestrian but I know I am failing. It’s sickening.

Ernest Hemingway’s advice to “write one true sentence” is the best writer’s advice ever given. Just say the first absolutely true thing and go from there. Don’t equivocate, preface, or hedge. Or apologize. Don’t hide your light under a bushel basket, my mother would say, oh, no, put your sentence on a platter like a fine smoked salmon that you bought against your better judgment.

Yearnings are just that. Sometimes they aren’t meant to become reality because if they became reality they would become pedestrian, common, and without the glow of the possible. It’s what’s possible that keeps us alive.

Risky Business

Alzheimer’s Disease is just drenched in stigma. It’s the leprosy of our time, the worst possible thing that could happen. Your hands will fall off, your nose, parts of you will drop to the ground, strewn about the landscape, and people will run away when they see you coming. No, they won’t even look at you, won’t see you because you’ll be living on an island that spares them the trouble.

Yes. Alzheimer’s has that kind of stigma. Mega-stigma.

It has so much stigma that, after each sentence, I want to say “I don’t have Alzheimer’s.” I don’t want anyone thinking my every lost key or forgotten name is a symptom in search of a disease. I’m as sharp as they make ’em, don’t you know.

Today, I got an email from a national Alzheimer’s prevention registry. This is something that I signed up for in one of my over-zealous moments about how I should do more about Alzheimer’s Disease because it killed my mother.

Participation in the registry begins with submitting a DNA test. This is so, down the road, the registry can match a person with a study or drug trial that, for instance, compares outcomes for people predisposed to Alzheimer’s to those not so unfortunate.

It’s all about the APOE4 gene. If you have it, your chances of developing Alzheimer’s Disease later in life are way higher than people who have APOE2 or APOE3. Way higher. I’d say radioactive but that would sound hysterical and that’s uncalled for this early in the game.

So I don’t know if I have the APOE4 gene but the registry folks do. I gave them my DNA, remember? And they’ll tell me if I decide to participate in the study described in the email. Wait, let me clarify. They’ll tell me if I have the high risk gene if I want them to.

I’m thinking about it.

Cracked

Yesterday I made a fried egg sandwich, ate it, left the house to go shopping, came back two hours later, and turned the burner off under the frying pan. I thought maybe I should put an X on the calendar so we could have a definitive date for the onset of my Alzheimer’s Disease but my husband said, no, I’d done it before.

I wasn’t so sure.

It seemed an especially egregious error. Noteworthy.

The stove incident led me to wondering about what might have been my mother’s watershed event, the moment she knew she was at a point of no return. She’d had Alzheimer’s Disease for many years before I knew about it. We were estranged, split over a bad telephone conversation, something so inconsequential that if I told you right now what it was, you’d shake your head and wonder what kind of person I am. In any event, many years passed until my father started writing me letters. The letters dribbled out the truth until I got the full picture. My mother was losing her mind.

When, after many years, I finally saw my mother face to face, she remembered me, knew my name, but I think she’d been practicing. There were thin wisps of memory around her and I was one of them. But I was floating away and I could feel it, what I was, what I had been to her, was fast becoming ephemeral. We sat together on the couch and she pulled out an old family scrapbook. It was the one with pictures of her family when they spent time at a cabin at Gun Lake in Michigan. She pointed to a little girl sitting at the end of the dock, “the little one,” she said, “the little one.” It was her sister Marjory.

There were more times like that with my mother, times when she was leaving me just the briefest of notes, words that she’d found in her pocket. It was too late to ask her how it had been to lose her mind. I’d missed that chance. There was no backtracking on the journey she had already made while I was gone.

So I wonder about the fried egg incident and whether it was a random event or the beginning. I wonder how many random events my mother had before she started to string them together into the noose that would become her Alzheimer’s Disease. How many times she left the house with the flame still burning under a frying pan. It’s chilling to consider. So I won’t.

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Photo by Kelly Neil on Unsplash

As part of World Alzheimer’s Month, the Alzheimer’s Association is conducting charitable walks across the country. I’m walking in Milwaukee’s walk in honor of my mother, Virginia. Each of us has a relative or a friend who has struggled with this disease. Consider doing the Alzheimer’s Walk for them.  Funds raised will support research for a cure and help for caregivers. Find a walk by going to http://www.alz.org. 

 

 

 

 

 

Truth or Dare

The little box with the DNA swab for my Alzheimer’s bad gene test came in the mail yesterday. The nice people at the Alzheimer’s Prevention Registry that coordinates research on Alzheimer’s sent it to me. The deal is they don’t tell me if I have the bad gene unless I volunteer for research in which having a bad gene is germane. So I could know at some point if I have a hugely increased risk of Alzheimer’s. If I want to know, that is.

Signing up seemed like a community-minded thing to do, a way to contribute to the knowledge base. I am real keen on a big knowledge base.

My mother and sister-in-law died of Alzheimer’s Disease. How it works, how it all goes down, as we used to say, I know about that. And there’s nothing about having Alzheimer’s Disease that is noble or triumphant. It’s loss, loss, loss. Alzheimer’s left my mother limp in the bathtub with my father unable to lift her. He had to call the fire department to rescue his own wife from the bathtub. She’d lost the know-how, forgotten how to move her own body. And he’d lost his strength. Loss. Losing.

So naturally I have a fair amount of dread about the possibility of having Alzheimer’s Disease myself.

I told my husband about the testing kit while we were driving to the grocery store, including the part where I could possibly learn if I have the awful APOE-e4 gene. Having this gene increases risk but it’s not an absolute predictor. You could have the gene and be fine forever. Or not. It’s the ‘or not’ that spurs all the weeping.

“What would you do differently if you found out you had the bad gene?”

I didn’t have an answer.

Hit the road? Visit all the world’s great truck stops? Write all day every day until I become wordless? Walk the beach? Pace the hallway? Bind myself up? Let myself go? Leave a note? Or not?

I don’t know.

I’m not sure my mother knew she had Alzheimer’s Disease. I don’t think my father ever told her. He just carefully shrank her life. When it was time to renew her driver’s license, he convinced her she would have to retake the written driver’s test. He got a copy of the manual and sat down with her every night to review the rules of the road and memorize all the signs. Stop, Yield, Train Crossing. She soon lost interest, as he knew she would, and the notion of a driver’s license evaporated. He never had to say no to her, never had to tell her why. She didn’t care.

She never saw it coming. Maybe that was wise. I don’t know.

Maybe my mother, unaware and uninformed as she was, had the right idea.

She just lived her life until it wasn’t there anymore.

 

 

 

 

 

 

Will the Last Thought to Leave, Please Turn Off the Light?

Red's Wrap

I am doomed.  If I thought I was going to do figure eights around Alzheimer’s Disease, taking first the inner edge then the outer of a perfect pair of white figure skates, laughing knowingly at my age peers stringing little beads together around a table where adolescent recreational therapists tried to keep them happy and oriented to date and time, I was completely, totally, absolutely fucking wrong.  Because today, my friends, the ubiquitous hearing aid ad in the paper proclaimed: People with untreated hearing loss have 2 to 3 X the risk of having Alzheimer’s Disease.

I saw the ad, dropped the newspaper on the bed, covered my ears, and yelped.  How is it possible that my hearing loss which is, itself, driving me utterly crazy and draping me with hearing aids and electronic streamers and unanswered phone calls and personal space violations galore, how is it that, in addition to…

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Virginia’s Voyagers

I’ve written about my mother many times.

She was an enigma, the entire time I knew her. She was cool, gathered, quiet and definite. She was tailored and streamlined, her blouse always pressed and her seams straight. She was careful and spare. Her entire presence was like a cool cloth on a fevered brow. I will never know anyone as gentle as my mother.

When my mother died at the age of 84, she had Alzheimer’s. She had stopped cooking, golfing and talking. She stacked cans of beans and hash in the pantry and then decorated the towers with Christmas bows. And then she stopped walking. She kissed my father’s hands the night before she died but she had forgotten everything else about her life.

So fifteen years after she died, I am walking in the local Alzheimer’s Walk to raise money for research and care. I have no idea what took me so long to do this simple thing – of showing up, claiming her and her Alzheimer’s Disease, doing something to make things better for people like her and me and us. All of us. We all know someone who has been hurt by this awful disease.

If you think you can support me in this little wee mission, here’s the link to Virginia’s Voyagers, my Milwaukee Alzheimer’s Association walk team, where you can donate to the cause.

If there’s a walk in your town, sign up.

Everyone deserves to remember the life they lived.

 

Arc

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The ball sailed through the air, powered by my mother’s perfect stroke, her stance at the backyard tee textbook beautiful, the arc of her swing like the flight of a ballerina’s arm.

She held her club aloft, holding her follow-through, waiting for her ball to land, to go where she’d aimed it.

The neighbor’s window shattered.

We said nothing. My mother put her five-iron on the picnic table and went in the house. My 14-year old son picked up the rest of the practice balls, refilling the plastic bucket we’d dumped on the lawn just minutes before.

My mother’s embarrassment fell like rain on all of us.

Her physical self was still strong even though her brain was dissolving, Alzheimer’s Disease was killing her. She could swing a golf club, true and beautiful. It made her proud to remember. And then the glass shattered and she folded in on herself.

She sat collapsed in her chair while my son explained to his grandfather what had happened.

“There must have been a regular ball mixed in with the practice balls and I hit it over the fence and it broke the window next door. I’m really sorry.”

My father shook his head. “I guess I’ll have to go over there and tell him we’ll fix it.”

My mother listened to this news, her sympathy for her grandson written on her face. She was proud of him for taking responsibility.

So was I.