Cape Cod author Kate Whouley's mother died while suffering from Alzheimer's disease in 2007. Whouley has now written a provocative book about the experience, "Remembering the Music, Forgetting the Words: Travels with Mom in the Land of Dementia." In it, Whouley shares her belief that "memory is overrated" and describes why she finally stopped prodding her mother to remember forgotten thoughts.
WBUR's All Things Considered host Sacha Pfeiffer started by asking Whouley about her realization that an early sign of her mother's illness was her effort to keep her daughter out of her house.
Kate Whouley: She did a very good job of meeting me at the door for months on end. And it didn't really key in to me that that was a problem until she asked me to kitty-sit for her cat. And when I stepped across the threshold, I was first assaulted by the smell because there were so many dirty dishes, dirty cat food cans — just piles of trash everywhere.
Sacha Pfeiffer: And unpaid bills, even more alarmingly.
Well, those took a while to discover because I had to clear out the cat food cans.
And beneath those were the shut-off notices and collection letters.
Yes. As I dug deeper into my mother's household, I discovered that it was in more disarray than just in the housekeeping.
Her hygiene also had begun to go downhill. She had forgotten how to cook things as simple as frozen dinners.
I didn't know that yet, but in time I started to discover that. I'd see that she got some good meals with me, and then I'd buy her a whole ton of frozen food, which remained in her freezer.
Because, as I think an elder care consultant had said to you, one of the things that happens to people who have Alzheimer's is they basically forget the sequences of daily life. They forget, "Oh, after I wake up, I'm supposed to take a shower and eat breakfast."
Right, and at this point in my mother's forgetting, she remembered some of the sequences but not all of them.
What was your emotional reaction to realizing your mother was going through this?
Initially, I think I felt angry. I felt drawn in in a way that I didn't want to be drawn into my mom's life at that point. We'd just sort of reached a stasis point in a complicated relationship, and now here we were going down the rabbit hole again.
I may be oversimplifying this, but a key part of what you write in your book is that Alzheimer's may not be as bad as people think. Am I oversimplifying by describing it that way?
No, I don't think you are, although a lot of people will get angry just at that generalization, I'm sure. But I found with my mother that, although the journey is difficult, it is a journey, and I learned so much. And in a bizarre way I'm rather grateful for the disease. It ended up healing our relationship.
In what way?
Well, I think that I was able to just be there for her and, you know, step past our history. We didn't have to remember our history any more. She forgot it.
Which had been a tense history for much of your relationship.
Yes. We hadn't had an easy relationship. And I think part of why I wrote the book, too, was just to tell people that it doesn't matter what your past relationship is, especially if the person you're with can't remember it.
There's a section of your book where you talk about memory being overrated. Could you read that part?
What is important in my mother's life and in the time I spend with her is that we have these moments. I can string them together into memory, and she cannot. But what I believe — what I have to believe — is that the quality of the moment matters, if only in that moment. She may not remember what we had for supper or what we talked about while we were waiting for the food to arrive. But she enjoys the meal. She revels in the conversation. She'll eat the ice cream for dessert with unabashed enthusiasm.
And then, as you go on to say, you may have been there as she ate the ice cream, and the next day she'll say she hadn't seen you in weeks.
That's right. And I think that early on in my journey with my mom that used to really bother me. I felt like I needed to prod her and remind her that I'd been there. And, as time went on, I realized, no, that doesn't matter. It just matters that I'm going to show up for her again.
Kate, you've said that sometimes people get mad, basically, when they read your positive spin on what Alzheimer's can be. So, do you think it is fair to say that every person's experience is very different, and for some people this may be 100 percent tragedy without any glimmer of a silver lining, as it seems to have been for you?
I think that when people talk about it being tragic, they're often focused on how it feels for themselves and for the family members around them. My message, I guess, is to sort of show up. Dig deep. Find the compassion, and worry less about yourself than about the person in front of you.
Whouley's mother died before she entered the late stage of Alzheimer's disease, which can include paranoia, violent outbursts and severe cognitive decline. Whouley acknowledges that she and her mother never had to cope with those experiences.
This program aired on October 18, 2011.