This is a personal story about what it’s like to experience a family health crisis so all-consuming you have little time for anything except being a caregiver — not even cooking (or sometimes even eating) — and find yourself relying on friends and even strangers to prepare meals for you.
But it starts with another personal story, even though I’m not very proud of it. A few years ago, a gentleman who belonged to my synagogue — Temple Beth Avodah in Newton — went through a similar crisis. His wife was very ill, and the Temple’s Caring Committee was arranging for members to bring them meals. I put my name on a list, cooked a three-course meal, and figured I’d done my bit.
A year or so later, I learned that the woman was still sick, and the congregation still delivering meals. I remember thinking, uncharitably, there was something a little presumptuous about asking for help for so long. I wondered: Why couldn’t this man cook dinner for his own wife?
Now I know why.
Four years ago my husband David was diagnosed with a debilitating terminal illness, amyotrophic lateral sclerosis, or ALS. First he lost his speech, then his ability to walk and move independently, and ultimately, in January, his life.
For me there were losses too, though not as cataclysmic. A daily routine not touched by worry and grief. My energy. A social life. And something that turned out to be one of the biggest sacrifices of all: the chance to be in the sanctuary of my own kitchen and prepare family meals, which had always been therapeutic. The job of looking after my husband called on skills that did not come naturally, and now I’d even lost the means of caring for him in the best way I knew how.
I continued to work, but the rest of the time I was on ALS detail, with help from my son and daughter, both in their 20s. Still, my job description included juggling medical appointments, ordering equipment, coordinating health aides, overseeing a major renovation to make the house accessible, keeping friends and family in the loop about David, and bickering with insurance companies that seemed to have a penchant for rejecting our claims.
Most days it was impossible to even contemplate cooking, let alone do it. What I didn’t consider when I smugly faulted the gentleman in my synagogue was that there’s a lot more to cooking than just cooking. Before you cook you have to shop, before that you have to plan, and before that you have to make a list (which in my case meant confronting an accusatory refrigerator filled with expired food). And at the end of it all there’s a kitchen to clean. Many evenings I was so bone-weary I couldn’t muster the strength to put leftover pizza in the microwave, or open a bag of lettuce for salad. It was easier not to eat.
A friend offered to mobilize the Caring Committee, but I wanted nothing to do with it. I thought the name was treacly. Plus, we are a private family, and more accustomed to being on the giving side. The thought of soliciting food from strangers seemed humiliating. Countless people had informed me — tactlessly, I thought — that ALS was the worst disease imaginable. I couldn’t face the pity when I answered the door.
On the other hand, David needed healthy meals, and would be subsisting on fish sticks pretty soon if I couldn’t come up with something better. All of our relatives live far away, and though they took turns helping out, they couldn’t be with us all the time. Eventually I talked myself into a compromise. I’d accept meals from friends but not from strangers. It was for David’s sake, I told everybody.
Thus commenced a sumptuous parade of lasagnas, hearty soups, kugels, and fish casseroles, announcing themselves with the sound of the doorbell, three times a week. The meals made our lives much easier, but I started to feel guilty, worried that it put too much pressure on the same volunteers. At this rate, they’d burn themselves out. We needed more people in the mix. The dreaded Caring Committee was summoned.
Fortunately, the ecosystem of caregiving has become sophisticated, thanks to the Internet and to efforts by caregivers in the overstressed sandwich generation.
Like a lot of communities across the country, my synagogue uses an online coordination platform called Lotsa Helping Hands; one of its features is a “help calendar” for people to sign up for tasks; the caregiver posts preferences or food requests (such as “We’re all set on lasagna, thank you”). I didn’t even need to answer the door on days when I wasn’t up to it; I left a cooler on the porch and posted a message about it.
Lotsa Helping Hands was founded in 2008 by a Sudbury man named Barry Katz, after he lost his wife to cancer. He’d had his own frustrations with people bringing uncoordinated meals while she was ill. “I had no idea when to expect them,” he said. Then there were the do-gooders who wouldn’t back off. “There were people who were in my face all the time wanting to help, and that got very difficult.”
He realized that a lot of well-intentioned people are clueless as to how to go about it. “Most people honestly want to be told what to do,” Katz said. “They need a mechanism. Once they have that, they are in their comfort zone.”
That mechanism worked well for us. Dozens of people signed up, many strangers. We knew them as the “Arctic char and wasabi potato lady.” Or “Beverly-with-salmon-and-farro.” Not everyone cooked — some defrosted, others shopped — but it made no difference. What we saw was a Caring Committee that really cared. Some brought flowers, or wine, or dipped strawberries in chocolate. I was astonished at their kindness, and at the grace with which strangers were able to put me at ease. Many sent e-mails so thoughtful they sometimes brought me to tears.
“It is an honor to cook for you and David. If I can create a moment of pleasure for you both, then I have accomplished my goal.”
“I am your chef for Friday. I really like to cook and to have happy recipients.”
“I imagine you must be missing some of your favorite meals. If there is a recipe that you like (not too gourmet) I can cook it for you.”
At first, I dreaded that moment of transaction — the uncomfortable exchange in which food passes from one set of awkward hands to another — but after a while, I started to enjoy it. This was partly because meals often arrived with stories behind them. One woman had just lost her mother, and brought us the lentil and dumpling soup her mother loved to make. Another who grew up in Romania prepared pancakes called clatite, a favorite of her mother. (See recipe) Which led to a series of conversations about her life in Romania and, after David died, a cooking date in which we made clatite together. It also led to her sending me an excited e-mail one day to say that in searching through a bag of old notes for the clatite recipe, she’d unearthed her mother’s 60-year-old battered Romanian cookbook.
“It had been too painful for me all those years to go through that stuff,” she wrote.
Being on the receiving end of benevolence taught me a few valuable lessons (not the least of which is humility). Cooking for distressed friends can bring joy and feel vital to caring people who would otherwise feel helpless. “Food,” my daughter Sara concluded, “is the currency of grief.”
A few days after David’s death, the doorbell stopped working. I think it knew its work was firstname.lastname@example.org.