The Problem She Could Name-2

    Part 2: How We Talk About Alzheimer’s

My sister went through a phase where she could not stop thinking about von Willebrand disease.

She does, in fact, have von Willebrand disease. That part is real. It’s something she has lived with her entire life, and it has caused real problems over the years.

During that time, she would call me several times a day, very stressed, and say, “I have a problem.”

I’d ask, “What’s your problem?”

And she’d say, “I have von Willebrand.”

As if it were a new concern.

I’d ask if she was having a nosebleed or any new bruises. She’d say no. Then, a moment later, she’d say again, “I have a problem. I have von Willebrand.”

After being sure she wasn't having a bleeding issue, I would say, “You do have von Willebrand disease. That’s true. But the bigger problem right now is that you also have Alzheimer’s.”

She’d pause. Then she’d say, “Crap.”

And then—because Alzheimer’s doesn’t respect insight—we’d have the same conversation all over again.

As Alzheimer’s progresses, it’s like a jump scare. For the person who has it—and for the people who love them—because you never know what ability will disappear next, or what behavior or obsession will suddenly appear. A fear or fixation shows up, stays for a while, then fades. Just as you adapt to one loss or anxiety, something else takes its place.

I think my sister could feel that something wasn’t right, but she couldn’t hold onto the word for it. Alzheimer’s was new. Von Willebrand was familiar—a diagnosis she had known her whole life, one she could still remember and, with her bruises, still see.

So she used the diagnosis she could remember to name her “problem.”

There is no punchline—just sadness.

Still, I’m grateful for those moments—for the chance to acknowledge what she was experiencing. To name it out loud. To let her say how hard it was, knowing there was nothing I could do to change it.