I can’t really talk about Jenny without including Don. Don is Jenny’s husband. And more than anyone else I’ve met with Alzheimer’s, they are in this experience together.
I meet up with Jenny and Don at a café. Around lunchtime, it’s crowded and noisy with customers. We decide we need to find a quieter and less distracting place to sit and talk. Jenny is thirsty, so Don leaves us to buy a bottled water for her before we go. He has just finished telling me that Jenny fell outside on the pavement.
Are you cut?
“What do you mean?”
Are you bleeding anywhere?
You just fell?
I’m unsure that I want to pursue this line of questioning. I don’t want to shine a spotlight on her Alzheimer’s like this. I don’t want to make her uncomfortable.
“I did? Is that what he said?”
“Oh, then I must’ve. I’m fine.”
She smiles and puts me at ease. So much about Jenny strikes me as vibrant and playful and young in spirit. She’s wearing a hot pink shirt and crocs. Her gray hair is pulled back tight into a high ponytail. Even her name, Jenny, and not Jenn or Jennifer, is fun.
Don returns with her water, and we head off and find a quiet spot.
Tell me about a typical day for you.
“I always go out. I walk a whole lot. We live near water, so I love walking down by the…the….the…”
“Lake Michigan,” says Don.
“Lake Michigan, yes. I love walking. I always have.”
Do you walk alone?
Where do you live?
“Up at the top…it looks right down to the water. It’s wonderful. It’s a lovely view. I walk there and almost anywhere. I walk up to…within…ahh, it’s so clear to me.”
“The Art Institute,” says Don.
“Yes, the Art Institute. The Cultural Center. You know, it’s very nice.”
Jenny’s anomia is quite severe and interferes with almost every answer she gives.
“I go to concerts at the Cultural Center. No set schedule. I can’t do as much as I used to do. But I always want to walk forward. I get angry at people who don’t want to let me do things or insist that I do or don’t, whether it’s silly or important. I don’t like those rules. On the other side of it…I…it’s doing what I really love to do…is spend time down close to the water.”
I wonder if her experience of this symptom is frustrating or embarrassing. It doesn’t seem to bother her. She appears to be genuinely enjoying our conversation.
What is it like having Alzheimer’s?
“I don’t think about it. I think I know all I want to know about Alzheimer’s. I do most things now that I did before. I definitely got annoyed when I found out I had it. But I thought it was me. It was a relief to know it was something other than me causing the problem.”
“Jenny was diagnosed April 1, 2002. Some joke! Her major symptom was agitation. As soon as she was diagnosed, the agitation stopped,” said Don.
Tell me about what you like to do at home.
“I look at some of the old bits of…I’ve been putting things away for years and years and years and years.”
“Letters to your mother. What she’s been putting away. She’s been going through letters she wrote to her mother,” explains Don.
“They’re steamy!” Jenny laughs.
She doesn’t remember her own letters to her mother when she reads them, but she enjoys them, often laughing out loud as she reads. She doesn’t mind that she doesn’t remember writing them or the stories as belonging to her own history. This feels normal to her. The stories in those letters happened so long ago, she feels that anyone could forget them. She’s not disturbed at all. She enjoys the letters for the content that’s there and doesn’t see them as evidence of a woman she once was who she can no longer remember.
“I sometimes look at some of the old stuff. I was an only child.”
“For a while you were. You have a sibling. There are two of you,” says Don.
“Oh, yes, that’s right. Anyway…”
Jenny and Don have many of these exchanges. Jenny can’t find a word, and Don fills in the blank. Jenny says something inaccurate, and Don corrects her. And she then agrees or disagrees or chooses to ignore him and continues on in stride, unruffled. Don is never patronizing. He’s not correcting an Alzheimer’s victim. The respect he has for his wife is obvious and enormous, and I can’t imagine it has been diminished at all by this disease. These little sidebars feel like the ordinary exchanges between a husband and wife who’ve been married for a long time. Of course, what Jenny can’t remember isn’t ordinary. But they both treat it that way. And it moves the conversation along. No one is embarrassed or upset or apologizing.
“I’m English to begin with. I came here in…”
She looks to Don.
“Yes, ‘64, and I actually didn’t like it very much. It seemed a stuffy place!”
“Well, she’d been in Africa for five years.”
“I was in Nigeria for four years, so I’d already done all that.”
What were you doing in Nigeria?
For the rest of my conversation with Jenny, we don’t talk about Alzheimer’s. She tells me about Nigeria, about college at Oxford, about her former job in health advocacy, about her travels and friends. At one point, I realize that we don’t have much time left together, and I’m tempted to ask her to get back to talking about Alzheimer’s. But thankfully, I don’t. Jenny isn’t about Alzheimer’s. Don isn’t about Alzheimer’s either. I remember what she’d said earlier:
“I don’t think about it.”
Her Alzheimer’s is like a naughty toddler throwing a tantrum in the middle of the room. If they were to try to tame it, bargain with it, or beg it to stop, if they became embarrassed or enraged by it, they’d only be feeding energy into it, making it bigger. It would take over and define their experience. Instead they ignore it and carry on. It’s there, but they don’t focus on it.
When I think back on my conversation with Jenny, I picture sunny walks along Lake Michigan, concerts at the Cultural Center, and Africa. I remember her pink shirt, her ponytail, and her laugh. And I remember the big hug she gave me when we were done.
Lisa Genova, Ph.D. author of STILL ALICE, excerpted from LIVING ALZHEIMER'S