I thought she had lead poisoning. It was the only explanation I could come up with for my mother’s behavior - at 56 she was forgetting, repeating the same sentences, struggling sometimes to find words. They lived in an old pre-Civil War farmhouse in Georgia. We just needed to get to Lowe’s and buy test strips. That would likely solve it...but the walls and plumbing were clean. It wasn’t lead. Two neurologists and months later we had a diagnosis of early onset Alzheimer’s.
I can’t remember what any of us were wearing the day the doctor told us what was happening. I can’t remember what he looked like or the shape his mouth made when the words came out. I can remember that my mother was asked to draw the face of a clock as part of the evaluation which made me shake my head. She’d been an elementary school teacher for 35 years. Even late in the game…she could draw the damn clock.
The next few years were sad and tender and sometimes funny. She bought cartloads of things she could remember she at one time had needed. There were endless boxes of chocolate pudding in the pantry and a lot of Windex.
She was the youngest of 8 children and invited all her siblings and their spouses to a Christmas lunch and then forgot she’d invited them. We scrambled when people started showing up and ended up serving leftover vegetable soup and Kraft macaroni and cheese.
I took her to Sears for new clothes as she had a hard time remembering to eat and had dropped a lot of weight not knowing yet the careful attention she needed. She came out to the doorway almost to the store floor in her underwear to show me that the shirt I’d suggested to her was a little loose in the arms.
She loved Audrey Hepburn movies so of an evening when it was just the two of us, I’d pull one out and pop in a tape but would end up pressing pause again and again as she asked who the characters were and what exactly they were doing.
She had always had a thing for trashy romance novels (my step dad called them soft porn) but she became obsessed with buying more and more reading 2 and 3 at a time although she could not keep the storylines straight. When she began hallucinating, those stories took on a new life as she described to me a new neighbor walking into the yard from down the street and dancing with her in the driveway.
My cousin told me she saw my mom in the grocery store long after my mom should have stopped driving. My cousin said they would run into each other in every aisle and my mom would forget they’d just had a gossipy conversation about neighbors and family...then they’d have it again. My cousin said, “I just remember feeling loved every time Barbara greeted me with such joy as we rounded each aisle.It is one of my favorite memories of her.”
One time I blanked while we were traveling down a long stretch of highway. I blurted out, “Are we going the right way?” After a long pause my mother looked at me seriously and said,” We’re going the same way as all these people beside us.”
In a moment of utter exhaustion my stepfather said to me without a trace of irony, “She could hide her own Easter eggs.”
The Lord of the Rings movies came out while all of this was happening. I came to think of people with Alzheimer’s as the dark riders. Once proud and strong but drifting into the shadow until they were unrecognizable.
As the disease progressed it became harder to take her out. We’d enter a store and fear would cover her face. She couldn’t remember where we were or why we were there. She’d be upset by passing cars asking with complete frustration, “Why are they flashing their lights at us?” when their turn signals were on. She needed someone to sleep beside her so that she wasn’t scared. It got worse...a lot worse.
So when I tell you that if you are a child of a parent with early onset Alzheimer’s you have a 50% chance of getting it yourself, you will understand that I have no illusions about what my future could hold. My mother was symptomatic at 56. I turn 50 in January. The next decade of my life hinges on the flip of a genetic coin.
Alzheimer’s used to paralyze me. Now it just kind of pisses me off. As a nurse, I often see folks for whom illness is a stunning, unwelcome surprise. Sometimes they don’t want to to discuss the specifics of the disease they just need to process how their body could go so wrong.
The gift my mother left me was that I know it’s coming...if not Alzheimer’s then something else.
I knew a lawyer in Kentucky who was fearless in confronting people in power on behalf of folks who were getting screwed over. I asked him about it...how he got so brave. He told me about his young wife dying of cancer shortly after their marriage began. He said, “When the worst thing that can happen to you has happened, you just aren’t scared anymore.”
I’m not there yet. I still get scared a lot, but I have made a lot of decision based on this question...if I only have a few more cognizant years left, is this how I want to spend my time?
I try really hard not to go to meetings. I try to listen to people, especially family when they are speaking. I try not to get too upset at what people say on Facebook. I take a nap on Saturdays AND Sundays. I drive with the windows down so I can feel the air on my skin.
I went back to school to be a nurse at 42. I was lucky and privileged but it was also a little ballsy, me with my old middle-aged-might-get-Alzheimer’s-brain running with those 20 somethings. I am proud of that. I tell my family every day that I love them and I’ve told them what to do with me if the Alzheimer’s comes, and how I want to be buried, and what I want done at my funeral. I am proud of that too.
Here’s the gift my mom gave me that I am passing on to you...You are dying. Maybe soon maybe later but your time is short. Go live the life you want to live. Love the people you want to love. Be a good brave human right now. You have permission. And when you have embraced your own sweet existence, give others the permission to do the same.
