By Rabbi Barbara Aiello
“My brother and I made plans to have Mom move to Assisted Living. But that was before Covid hit the nursing homes so we kept Mom at home. My brother helps some but I am Mom’s main care giver. It’s been almost a year and I’m burned out, exhausted and on edge. My family and friends mean well but some of the things they say – well, it’s clear they just don’t get it!” Shira K.
Shira K. is not alone. Her words could have been said by hundreds, maybe thousands of family members who, during the long months of the pandemic, provide the majority of daily care to an elderly family member.
In fact, according to Vitas Health Care and other agencies and organizations, regardless of the Covid crisis, “family members and close friends continue to provide daily care (to frail elderly men and women). That means that caregivers can be the front line recipients of well-meant but often misguided commentary that hurts more than it helps.
Just ask Ann Brenoff whose writing on the subject was nearly prophetic. Indeed well before the pandemic took hold, Brenoff alerted readers to what has become an important issue for those who serve as caregivers. Writing for the Huffington Post six years ago ( A Dozen Things You Should Never Say To A Caregiver, October 29 2015), Brenoff highlighted 12 specific comments often made to caregivers like Shira, that, for the most part, “won’t go over well.” These are the highlights of what caregivers wish others wouldn’t say:
“I could never do what you do!” Brenoff notes that no one knows when they themselves will be thrust into the role of caregiver, having to spring into action when a loved one needs help. Brenoff found that caregivers felt that “whether you think you will be up to the task when your time comes is pretty irrelevant to someone already doing it.” A better alternative – a kind compliment.
“You’re so brave!” Caregivers who responded to Brenoff’s survey said that courage has nothing to do with the care they give. Others said that assigning superhero status to caregiving is a way to create distance between family members and friends who might step back from helping because they’ve deified the caregiver to the point that they feel they could never measure up.
“If you ever need a break, just call me. Let me know what I can do to help.” Caregivers surveyed pointed out that a vague comment is not as helpful as a specific offer. Like Shira, caregivers are often exhausted and burned out and would appreciate concrete help such as “I am bringing dinner to your home. What night is best for you? Would you prefer chicken, beef, or pasta?”
“You really must make time for yourself.” Most caregivers understand that balance in life is Important. “We’re not martyrs,” Shira says. She agrees with most caregivers who ask for specificity. If a friend or family member notices that the caregiver has no personal down time, offer to provide her/him with time and space. One caregiver says, “Buy a bag of groceries, shovel the snow, wash the car, walk the dog, sit with the patient [so that] the caregiver has a free hour or two, bring coffee and a newspaper, do the dishes, vacuum the house, clean the bathroom — the list is endless.”
“God never gives us more than we can handle.” The Jewish mystics, among others, taught that God is not the giver of trouble so for this reason it is moot to affirm that God will not give you more trouble than you can handle. Instead as Jews we are taught that we work in partnership with the God of our understanding. In this partnership, based upon gratitude and faith, we are taught that we are not alone in our difficulties and that a working relationship with God will provide us with strength.
Ann Benhoff reports that according to a 2015 survey from AARP and the National Alliance for Caregiving, approximately one in three Americans is providing care to someone who is ill, disabled or elderly. In that same study, 78 percent of the caregivers said they needed help. Thanks to the Covid epidemic and its effect on an aging population the challenges facing family caregivers is particularly acute. For caregivers like Shira, what we say and how we say it can make more of a difference than we might think.