By Doug Garr
In the summer of 2003 my wife Meg suffered a debilitating stroke while we were vacationing in the south of France.
She was only 53.
She spent two weeks in intensive care at the Hopital Pasteur in Nice. She flew home on a stretcher; six seats were removed on the airliner to accommodate her.
Meg eventually recovered enough to resume her work as an art curator and to get around somewhat with a cane – even to travel abroad again. But she was mainly confined to a wheelchair with a severe left-side weakness. We’d lived on the Upper West Side since 1993, the last 25 years in a pre-war doorman building – one that, thankfully, had a portable wheelchair ramp to help us get in and out of the lobby.
Meg courageously coped with her disability for the better part of 17 years. She survived a hospitalization from Covid in 2020 but ultimately succumbed to a severe cardiac event the following year.
I was her principal caregiver until she died. Caregiving takes a heavy toll, especially on those who cannot afford aides. We could, but despite having a lot of part-time help, it was still enervating on every level.
At first, I had little idea how common my situation was. But consider this: a staggering 43.5 million caregivers have provided unpaid care to an adult or child in the last year, according to data from AARP and the National Alliance for Caregiving. And there have been studies that indicate caregiving takes a toll on life expectancies – no big surprise, given the rage, exhaustion, and depression that caregivers like myself experience.
Thankfully, I discovered the right support group, right here on the Upper West Side, to express those feelings.
The group is called Well Spouse. It’s a national nonprofit organization with an active local chapter on the Upper West Side. When I first joined in 2018, it met monthly at the Ansche Chesed Temple on West 100th Street, but since the pandemic the meetings are via Zoom.
Different from many support groups, Well Spouse focuses on the health and well-being of the caregiver, and not their partner. The approach was fairly straightforward: 15 to 20 people sitting in a circle, the great majority women. New members introduced themselves, and then the leader went around the room to allow us to talk. Around three-quarters of all caregivers are women, and can spend as much as 50 percent more time than men doing this work.
In the 11 or 12 years I attended Well Spouse, the meetings ranged from uplifting to depressing, depending on who showed up on a given evening – and my mood that week.
I don’t mean to be negative about this. But when you attend long enough you will eventually reveal all of your various guises. At least I did. You also become accustomed to listening to the heartbreaking stories of others. In sum, I got much more than I gave. Some meetings I just waited till the last few minutes to say anything, bottling up everything that was diminishing my ability to cope.
But I also got to know several members fairly well, and we often went out for a glass of wine at the Metro Diner on Broadway after meetings. Nearly four years after my wife died I’m still in touch with them.
Several days ago, I attended a Zoom meeting of my group, just as an observer. It was lightly attended; only five men and five women signed in. But I took a few notes to remind myself how necessary these gatherings had been for me, and now were for them. Here are some of the most cogent comments:
“Nothing I do pleases him.”
“I don’t know how to not be angry.”
“I advocate for my husband but nobody advocates for me.”
“I have to take care of me.”
“I don’t have time for fun.”
“It’s exhausting, even with 24-hour care.”
I was reminded that it was the opportunity to express our misery and emotions in a safe space that was the main attraction to many of us. At one meeting, a member who has since become a group leader said that when we hear that someone else is hauling far more baggage than ourselves, it makes us feel better: Whoa, I have it easy.
That group leader once told a newcomer not to feel bad when the thought crossed her mind sometimes that she just wished her spouse would die. She broke down when he told her that; she’d thought she was revealing a dark secret that only she harbored. We explained to her that we all had these same feelings at one time or another. And it was perfectly normal.
Grief has no timeline or boundary, and the amount and intensity are different for everyone. My wife and I lived together for nearly 47 years and were married for just under 42 years. I told my therapist that I’d become a grief nut; I’d read every book I could find, and checked out as many websites as I could. It’s taken me nearly four years to come out of the fog of constant mourning since her death. And I still wonder if I’d waited too long to take her off life support.
The cliché about loss is that we never move on; we can only move forward.
Here is the contact information for Well Spouse: info@wellspouse.org. 732-577-8899. I’m still involved with the national organization, providing mentoring one-on-one to those who don’t have access to a local group.
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This is a wonderful concept and group. We need , in addition caregivers for people without spouses or family. Remember, Medicare does not pay for aides- only Medicaid does that. So many single people who have worked their whole lives and who now have Medicare are left on the ice to go it alone.
Very good of you to write this. Yes, I’m sure so many readers share one aspect or another of this situation. And there is grief too, even as you are a caregiver, and wouldn’t trade your time together for anything. But you grieve the times you didn’t have, and won’t have, together – the loss(es) to the illness or condition, the loneliness of chronic illness, a quiet house. You may not want to go out much, just one of you. There is so much to be sad about in this cruel world, one can hardly complain – if one has hot water, enough food, even a bit of companionship, a warm bed. But life still does have its struggles.
Beautiful, helpful piece, Doug.
When my husband became ill, I went to Ansche Chesed for a caregiving group discussion. It was very helpful to talk with people who were in the same boat as I was. That said l, the group met in the evenings and I could not leave my husband alone at that time so I only went a few times. I’m glad that the caregiving group has continued. It’s extremely important for those of us who have had to care for a beloved partner to know, we are not alone.
What a wonderful recommendation! Thank you for sharing with your neighbors.
This group is just one example. Over the three years I was a caregiver to my now deceased partner, I discovered others. It is thanks to the zooms at the Smith Center for cancer support that I managed to get through the grueling horror filled time. And I wasn’t in control of finances and he REFUSED to hire aides or skilled nurses.
A nightmare. I am alive because of the loving support of others.
Very brave of you to share such a deeply personal story. And helpful to all.
I just want to thank you for your bravery in sharing this.
The wonderful novelist Zane Kotker co-founded Well Spouse. She contributed to it in various ways, including all the proceeds from her book “Mainstay: For the Well Spouse of the Chronically Ill” (first published in 1988 by Little, Brown and Company, then by Penguin, and still available from Bradford Books), written under the name Maggie Strong. “Mainstay” gives emotional encouragement and practical advice from Zane’s own life experience. When Zane died in 1999, tributes poured in from people who felt supported by her book and her presence.
I had no idea that the group was founded by a novelist. Thanks for sharing this information.