If you’ve been following my blog, you know that my wife was diagnosed recently with early onset Alzheimer’s. When hard things happen to families, it’s common to cover them up. These “family secrets” are unhealthy in so many ways. We as a family decided to be open and talk about our experience. I wrote about it Our family has pivoted to life with Alzheimer’s, and then our son did Life When Your Mom Has Alzheimer.
Kevin left out some important details. When I asked why, he said that he didn’t want it to be too long. OK. Regardless, it’s worth mentioning that my father caught pneumonia and then died this spring. I spent a significant amount of time with my family an hour+ away. Stephanie’s cognitive health was declining, so Kevin agreed to stay home with Stephanie. It was very destabilizing for her, but he really stepped up and provided as much support as he could. I know this impacted him personally and academically, but he just kept his head down and did what I asked.
My wife and I talked about her experiences. Our conversations have been honest, real and hard. Part of her form of the disease is that she has trouble with not only recall of memories, but simply talking. Here’s her story…
Gut punches
A couple weeks ago, I asked her how she’s doing. After much thinking and struggling, she said, “Not that good. I might not get to see Kevin walk down the aisle.” Gut punch. I had no idea what to say. I think I said, “Crap, he’s only 18. Hopefully marriage isn’t in his plans for a LONG TIME. How about we focus on his high school graduation and college first?” Stephanie laughed, which she does 200+ times a day, and said, “It gives me hope…” She couldn’t finish her thought. This inability to finish her thoughts is normal.
The rest of our conversation was filled with laughter and tears. She told me that her favorite things are her dog and her family. And in the short term she wants to spend time with her family. Everyday life. She wanted to say more but lost her train of thought.
Out of curiosity, I asked how she thinks I’m doing. Her very brief response is that I’m, “doing great.” She means both emotionally and with how well I handle things. She has no idea how much I scramble. As an example, our tax preparer just finished. We were 6 months late, and they cleared on the last day of an extension on our extension. She literally almost fired us. So I told her about Stephanie’s Alzheimer’s. She was very compassionate and completed them. And we got a solid refund. I don’t think this qualifies as “great.”
(I also figure it’s worth comparing my wife’s performance to mine. Our previous CPA once told us that we were always the first people to return our preparation kit. And she gave us a discount because Stephanie’s work on this packet was so comprehensive. I can only laugh. But hey, I got it done.)
It gets worse
And then there’s a dagger. In a discussion the other day, she told me that she’s afraid she isn’t going to wake up in the morning. FUCK, FUCK, FUCK!!! What was I supposed to say to that? I guess I said something kind and gave her a big hug.
I later did very quick research, and I “THINK” it said something about how people with Alzheimer’s are no more likely to die in their sleep than anyone else. I told her this, and we went with it, for now…
Step in right direction
A few months ago, Stephanie started taking Aricept, which is a first line treatment for Alzheimer’s. It’s supposed to slow the progression of the disease. Maybe I was missing something, but she sure seemed to be going downhill quickly.
She was admitted to the Alzheimer’s program at UCSF, which is a top 5 university in the country for research and treatment. I felt hopeful because it’s such an esteemed program. But the thought that a goal was to slow the progression, rather to improve symptoms, left me a bit pessimistic.
The doctor could not have been nicer. He spent 90 minutes with Stephanie, Kevin, her mother Cherrie and me. At the end he added Namenda. Her starter dose was .5 mg, then 1.0, 1.5 and 2.0.
It’s not a miracle, but…
It has been a game changer. By the 2nd day, her clarity of thought and verbal communication improved dramatically. Her ability to complete tasks I’ve asked her to do have also improved dramatically. As an example, we cook 90% of our meals at home. So the dishwasher runs 2-3 times a day. Stephanie helps put things away. Last week, the silverware would have been all over the place. And we’d have to send out a search party to find the measuring cups and cutting boards. We really don’t care where things are, but the difference between now and how it used to be is devastating. The other night, I came over and the silverware was put away “correctly.” In many ways, this seems like a simple task. But it’s ultimately like completing a puzzle. I’m excited and curious about how well she’ll be doing after titrating up to her final dose.
As another example, I asked what she thought each of us doing best. She is pleased that she’s going with the flow. She is pleased because Kevin is so kind and helpful. And I’m quirky. Ok, I recognize that I’m working really hard to bring laughter and fun to the house. But quirky…I guess I wanted some sort of glowing compliment. Oh well…Still her ability to think things through and express her thoughts clearly is a big improvement.
Moving forward. What’s next?
I asked Stephanie to read this before posting. I didn’t want to misstate her thoughts or share anything too personal. Very clearly and fluently she said, “This is a horrible disease, and I want people to know what it’s like to go through.” She hopes it might help people to not feel so alone. Sadly, she also started crying and said, “I don’t want to die soon.” I held her and squeezed her tightly. I didn’t say much…
