Who cares for the caretaker?

Twenty-some years ago, if you gathered a group of Jewish baby-boomer mothers together, it wouldn’t be long before they would be swapping stories of how to help their young children avoid toilet training “accidents,” the best way to get your finicky toddler to consume more healthy calories and how to handle separation anxiety.

Now that same cohort is dealing with similar issues, but this time it’s with their aging parents. Those of us who are wearing Not Your Daughter’s Jeans and are lucky enough to still have a parent alive are facing an unanticipated role in life — being a caregiver to our parents in one form or another. It’s a weird role reversal that can strain even the best family relationships.

For some, providing care is of the everyday, hands-on variety with making meals, paying bills and helping with showering, while others are caregiving long distance, from the other side of town or even from across the county. While caregiving for an aging parent is a national issue, with the United States’ senior population projected to double over the next 30 years, including a large increase of frail elderly (those older than 85), it’s even more of an accelerated trend within the Jewish community. According to The Jewish Federation of Greater Los Angeles, “Close to 20 percent of Jews are already over the age of 65, compared to less than 13 percent of the general population. In addition, a significant number of elderly Jews are over the age of 85 and need help with daily activities like eating, dressing and walking.”

Many of these middle-aged parents are also still taking care of their own children, and thus have been dubbed, “the sandwich generation.” And for those of us who have teens or young adults with special needs still living at home, I’ve been known to use the phrase “the grinder generation.” Just keeping track of all the various medical specialists, prescriptions and test results for two different high-need individuals is demanding, let alone the non-medical issues.

It’s fascinating that the challenges with our aging parents so often echo the same questions we faced as parents of teens, usually revolving around the ever-present tension between safety and independence. At what point do we need to step in when it comes to driving? Leaving them alone nights and on weekends? And, when should we step back and keep our mouths shut? If dad wants to eat turkey and tomato sandwiches every day for lunch and dinner, why not? He’s 91, and he can eat what he damn well pleases. But if the air conditioner breaks down during a heat wave, it has to be fixed, even if he vigorously objects.

Dementia (the most common form is Alzheimer’s disease) presents its own set of challenges beyond “typical aging.” Aside from the well-known memory loss, there can be mood swings, irrational anger and nasty accusations, plus the strange phenomenon known as “sundowning,” when people with dementia become more disoriented during the sunset hours. Seeing a parent fade away in slow motion takes a huge toll, no matter what financial resources a family has. It can literally take down two individuals at the same time if one adult child is providing all the care without any respite.

Another key issue is getting adult children to think of themselves as unpaid caregivers. Many baby boomers are spending significant amounts of time and emotional capital taking care of their aging parents but never stop to ask for help or support. If you don’t see yourself as a “caregiver,” you might not be taking good care of yourself, said Stefanie Elkins, program and outreach director of Leeza’s Care Connection.

“So often, caregivers in the Jewish community think the help provided by Jewish-affiliated social services is for “someone else,” she said. People who are family members don’t like to identify themselves as caregivers. “Acknowledging that you are taking care of an elderly relative can support and validate what you are doing. … Our Jewish community is very good about caring for ourselves — in fact, our social service agencies such as Jewish Family Service (JFS) care for the whole community,” Elkins said.

Synagogues can play a supportive role in helping family caregivers; they can expand their definition of “bikur cholim” (visiting the sick) beyond the congregant facing cancer or heart surgery to community members who are family caregivers for their elderly parents for many years. Those family caregivers need time off from taking care of their loved ones, and also help with finding in-home care or moving mom or dad to an assisted living or nursing home. Most importantly, and least costly, family caregivers need reassurance and support that they aren’t alone in their current journey.

In many parts of Los Angeles, help is nearby. The Ezra Network (jewishla.org/ezra), funded by Federation and the Jewish Community Foundation of Los Angeles, is operated in partnership with JFS and Jewish Vocational Service (JVS) as well as Bet Tzedek Legal Services. A trio of experts from JFS, JVS and Bet Tzedek provide on-site office hours at local synagogues and can provide free counseling, assistance and personalized referrals. There are currently synagogue clusters in Laurel Canyon, Mid-Wilshire, South Bay, the Westside and the West Valley.

“Aging is scary for people,” but it can also be a beautiful time to be present for someone else,” Elkins said. 

Michelle K. Wolf writes a monthly column for the Jewish Journal. Her Jews and Special Needs blog is here.