Word of the Week: With

In grade school I learned that a preposition is “anything a squirrel can do to a tree,” which doesn’t quite make sense until you consider some examples. A squirrel can go up a tree, down a tree, around a tree, from a tree, to a tree, over a tree, under a tree, etc. Get it? We had a mimeographed worksheet to illustrate this concept, with a picture of a stately tree and a mischievous little squirrel contemplating which preposition to try next.

I’m assuming anyone old enough to remember mimeographed worksheets (that smell, right?) is old enough to know someone with dementia. But even if you don’t, I invite you to consider that in this scenario, we caregivers are the squirrels and our friends with dementia are the trees. We can work around people with dementia, talk to them, do things for them, worry about them, etc. But by far the most important thing we squirrels can do is simply be with them.

In her acceptance speech at the Oscars, Julianne Moore (Best Actress, Still Alice) said of the film, in which she plays a woman with early-onset dementia:

“I’m so happy – I’m thrilled, actually – that we were able to hopefully shine a light on Alzheimer’s disease. So many people with this disease feel isolated and marginalized, and one of the wonderful things about movies is it makes us feel seen and not alone. And people with Alzheimer’s deserve to be seen, so that we can find a cure.”

Of course a cure would be lovely, but these words hold true even if a cure is never found. People – especially people with dementia – need to feel that they are not alone. There’s a reason the worst punishment in prison is solitary confinement.

Dementia patients are often cut off from their communities because their ability to contribute has changed. They can’t do what they used to do, so they miss out on the office gossip and the bowling league and the bridge club (although it’s amazing how long people retain the ability to play games they learned when they were young). We think of them as helpless, and we do things for them or to them, forgetting that the greatest pleasure is found in doing things with people. The trick is staying open to what they can still do, even if it’s as simple as holding hands.

That’s why I spend time sewing with Mom and why I take her with me to knitting and sewing groups. It’s why my sister takes her out for dinner every Friday night and to a museum or bookstore or special event every Saturday. It’s why my cousin takes Mom out for lunch and window shopping on Mondays, and why my brother and sister-in-law fly into town regularly to visit. It’s one of the main reasons I take Mom to church: so she can be with people who love her and tell her so.

Yes, these activities are stimulating, and that’s important for brain health. I recognize the value of mental engagement. I’m just saying that genuine, caring social engagement is beyond valuable: it’s indispensable.

As caregivers, we often do things for our loved ones. We pay Mom’s bills and trim her nails and make sure she receives the best medical care we can find. We drive her wherever she needs to go (and thank our lucky stars she gave up her car without a fight). Nevertheless, I will believe to my dying day that being with her is what makes her life bearable – sometimes even beautiful – as she grapples with dementia.

We are the squirrels, and she is the tree. She is the tree where we made our nest and found our food when we were small. She is the tree who gave us branches to play in and acorns to bury in the back yard. She is the tree who sheltered us when we were afraid.

Every person with dementia is someone’s tree. The least we squirrels can do is be with them.

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9 thoughts on “Word of the Week: With

  1. Carolyn, this piece is not only your best that I’ve read but also one of the finest pieces I’ve ever read by anybody. What a wonderful metaphor you’ve found for yourself and others to hold close, for we all will need to reach for it from time to time, whether we are directly affected by alzheimer’s or not. Thank you.

  2. Carolyn, thank for capturing in such an unforgettable way this profound spiritual insight into the essence of what we can do for people with dementia other than wait passively for other people to find a cure for their currently irreversible death of brain cells.. From what you have taught me here, what we can do for people with dementia is to learn how to be with them wherever life, on whatever terms, takes them. I will never look at a squirrel in the same way again, thanks to your magical facility for translating wisdom into art.

    There Is a Bridge, Michael

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