Recently, I was knocked flat for a day by a stomach virus. I couldn’t do anything but lie in bed, which gave me a lot of time to miss Mom. In my half-asleep state, I imagined a conversation with her—the one I wish I’d had, before it was too late. It began with me asking, “How does it feel to have Alzheimer’s? How does it feel in your head?” Her answers were clear, but just like with a vivid dream, I can’t recall what she said. I can only remember my questions: Are you scared? What are you most afraid of? What are you most scared to lose?
I don’t know why I never asked Mom these questions. Maybe I was in denial, afraid to ask because asking meant admitting she had Alzheimer’s. Alan Dienstag, a psychologist who works with Alzheimer’s patients, says that there’s a “lack of curiosity at a crucial moment that’s being driven by that fear and not wanting to look, not wanting to see it.” And that crucial moment is the time when you can have the conversations that matter most.
But at that crucial moment, I was also preoccupied with immediate concerns: moving my parents to a new place, getting Mom settled, reorganizing her closet and drawers, soothing her anxieties. I don’t know what we talked about really, but I probably spent more time asking her questions like—where do you want me to put your socks, or do you still need these sandals?—than inquiring about things that really mattered. Maybe I was too afraid to venture beyond her physical needs and peer into the terrifying abyss of Alzheimer’s.
Lately, I’ve been thinking about the early stages of the disease, about what I wish I’d said or done or known. I’m not beating myself up, because I know we handled Mom’s illness as best we could at the time. But as her Alzheimer’s progressed, I learned things along the way that might have changed my early approach.
Pretty much all the advice I would give myself is summed up in Alan Dienstag’s interview with Krista Tippett in On Being. Oddly enough, I listened to the same interview more than a year ago, quoting it in an earlier post, but the parts that spoke to me then were different, suggesting that at the time, I was preoccupied with Mom’s suffering and the possibility that I might someday be diagnosed with Alzheimer’s. Now that her suffering is over (though my fear of contracting the disease is alive and well), I’m more concerned about missed opportunities.
What leaps out to me in the interview today is Dienstag’s urge to conversation and his warning not to postpone or shy away from talking about the disease, because time is running out more quickly than you think: “It really slips away quickly. And you see it slipping away week after week.”
Our natural tendency is to deny the slippage and look away, because the disease seems so alien and embarrassing. For example, during the brief stretch when Mom was able to go to an adult daycare called Memory Lane, we let her believe she was volunteering there to help entertain the elderly (she was younger than many of the other attendees, and she did like helping out). We preserved her delusion in order to protect her from embarrassment. But in doing so, we may have denied her an opportunity to talk with other dementia patients (and with us) about her experience of the illness. According to Dienstag, people in the early stages of Alzheimer’s find relief and satisfaction in talking with others who have the same illness. The sense of mutual recognition and community breaks them out of the isolation that “is ultimately the destination that this illness brings them to.”
Dienstag offers a different way of looking at Alzheimer’s that makes it seem less shameful and isolating, and more familiar and even heroic. He says that talking with people in the early stages of the illness can remind us what we all have in common—i.e., our mortality:
we don’t have an unlimited amount of time. And we’re going to run out of it. We’re going to run out of it. And when you watch these people, you see people who are running out of time. So there’s almost something heroic like, “I’m going to tell you who I am before it’s too late. I’m going to tell you this story about picking lilacs from a tree with my mother.” Whatever it is. You know, a simple story like that somehow has this kind of — it’s elevated. It’s elevated by the circumstance.
Dienstag asks his patients write down their memories and give him what they’ve written, because he knows they’re likely to lose their papers or forget the memories by the next week. This practical decision gave him a profound insight: in handing him their writing, his patients weren’t losing their memories; they were giving them away, entrusting them to him. And as Dienstag’s grandmother realized near the end of her life, “if you can give something away, you don’t lose it.”
I apologize in advance for the de-elevating comparison, but this lesson reminds me of the “Magic Penny” song we used to sing in Sunday School, a tune whose sentimentality and ear-worm potential are rivalled only by Disney’s “It’s a Small World”:
Love is something if you give it away,
Give it away, give it away,
Love is something if you give it away,
You’ll end up having more.
It’s just like a magic penny,
Hold it tight and you won’t have any,
Lend it, spend it, and you’ll have so many,
They’ll roll all over the floor.
Now, I’ve encountered a few bad pennies and enough overdrafts to know that you can actually overspend love and end up with a deficit. But whatever the limitations of the magic penny metaphor for love, as a thought experiment, what if we applied its logic to memory? Think about it: memory is something if you give it away. If you give your memories away to others, those memories have the chance of becoming collective memories, and as collective memories, they have a lot more reach and staying power than if you keep them to yourself.
So what if, instead of hiding, denying, or being ashamed of Alzheimer’s, we accept it as an unwanted invitation to help those afflicted give away what matters most—our stories of who we are, how we got here, what we are most afraid of losing, and how we want to live our finite and final days.
The New York Times today ran a story about teenagers with terminal illnesses having a say in their end of life choices. There’s a new trend in social work to encourage these teenagers to talk about their illnesses and express their wishes for end of life care—conversations that benefit both the teenagers and their families. There’s even a planning guide for teens, asking questions like: If visitors arrive when you are asleep, do you want to be woken? If they start to cry, should they step outside or share their feelings? I wish there was a similar planning guide for Alzheimer’s, including all the questions I wish I’d asked Mom before it was too late for her to answer.
Since this post is actually less about looking back than paying it forward (did you catch the magic penny reference?), here are some other resources any of you who may be just starting down the road of Alzheimer’s with a family member:
- Read the book, The 36-Hour Day: A Family Guide to Caring for Person’s with Alzhiemer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, by Nancy L. Mace and Peter V. Rabins.
- Listen to this NPR story about families who are grappling caring for people with Alzheimer’s. See if there’s a Home Instead organization in your area.
- Find out if there’s an Arden Courts near you or similar facility dedicated to memory care. For us, Arden Courts in Hamden provided more affordable, personal, and loving care. Also consider the option of an Adult Family Care Home, an alternative I learned about from Dina Ditacchio Wentworth’s comment on my blog post about the costs of memory care.
- Explore the wide range of online resources for caregivers. Here are 5 trustworthy websites with tips for Alzheimer’s caregivers. There’s a lot of overlap between the strategies, but you may find one speaks more clearly to you than others:
- Alzheimer’s Reading Room
- Family Caregiver Blog
- Family Care Giving Alliance
- Mayo Clinic
- Alzheimer’s Association
- Lewy Body Dementia Association
- UCSF Medical Center
* A reader of this blog took the time to notify me that the Mayo Clinic link had changed. The “coping and support” page is no longer available; it appears that the Mayo Clinic is now more interested in directing people to their branches. I’ve added the Alzheimer’s Association and Lewy Body Dementia Association. The reader also suggested I add this link, warning about the importance of dental care for dementia patients. I haven’t had any personal experience with this dental organization, which appears to be a Nebraska business with a genuine interest in raising public awareness.