Reprinted with permission from Sh’ma Magazine.
“It’s the hardest thing I’ve ever done.” So say sons, daughters, husbands, and wives who have cared for elderly relatives through long, slow declines. They’ve confronted dear ones with painful realities (“Dad, it’s really not safe for you to drive any more.”), made agonizing choices (“Mom will stay in her apartment with a caregiver; Josh will not go to summer camp, as we can’t afford both.”), lost sleep (phone calls throughout the night, day after day), and experienced unimaginable stress. They’ve felt guilty–for what they couldn’t do for their frail loved one, for the way in which their partners and children got shortchanged, for not being able to do it all.
The demands of family caregiving for the elderly will rise dramatically in the near term. The number of Jews older than 65 is growing at unprecedented rates (according to the National Jewish Population Study, 17% in 1990, 19% in 2000), and the most rapid growth is among the oldest old. So, families are called to care for elderly members living longer, and with more extended periods of greater dependency, than ever before. This task will be even more difficult as it falls upon an ever smaller pool of caregivers (due to the decline in family size) who live at greater geographic distance.
Caring for aging loved ones is one of the greatest challenges facing our Jewish community. The Herculean task of family caregiving, while demanding, and often sorely trying, is largely invisible and unacknowledged. Caregiving can change one’s life, whether in the context of supporting a frail parent through a stay in a nursing home, struggling to keep a parent in his or her home, or caring for a spouse or parent in one’s own home.
Caring for aging family members can be devastating, for as we watch our mom, or wife, or brother, decline, we lose him or her a little bit more each day. Caregiving can be depressing, for, as one daughter who has cared for her frail parents for 10 years told me, “It’s not a task you can succeed at. No matter how creative I am, how much money I throw at it, how dedicated I am, they don’t get better, they just get sicker and needier.”
American secular culture values tasks that can be mastered and completed. The caregiving task does not have a neat or happy ending, as it comes to completion only with the death of the loved one. We don’t know how to value the gift of presence, the richness and connection we contribute in the moment, in the midst of the inevitable movement toward frailty and mortality.
Caregivers, experience economic, emotional, professional, and physical strain and may feel isolated from community at precisely the moment they are in most need of support. Caregivers are often too proud, too guilty, too depressed, or too overwhelmed to ask for help from their rabbi, their shul, or their community.
While it’s difficult for caregivers to reach out for assistance, the community may also fail to notice their needs. In our services and programs, we tend to relate to the Jewish family as a two-generational entity, and we thereby don’t even look for other individuals and relationships that may be vitally important to the family unit. We may not notice the strain caregivers are under until it becomes so dramatic it takes them away from us, or shows up symptomatically, in physical illness, marital strife, or a child’s acting out.
What can the community do to support family caregivers, to make the journey less isolated, and more bearable? Here are some preliminary suggestions.
1. Normative support: We need to acknowledge and celebrate the heroic efforts of family caregivers, from the pulpit, in the classroom, and in communal discourse.
2. Outreach: Offering support and encouragement to caregivers can help them feel connected, even when their participation in communal activities is curtailed while caregiving. We will learn a great deal if we ask how the caregiving is going (rather than avoid an awkward or sad conversation), and how to be supportive.
3. Counseling: Support groups and/or case management services to coordinate the details of a relative’s care will make an enormous difference.
4. Respite: What caregivers need the most is a break. Recruiting volunteers to provide respite care for a few hours, or finding funds to pay for adult day care or short-term stays in a nursing home is invaluable. Encouraging caregivers to take advantage of these resources where available is equally important.
R. Simeon b. Yohai said, “…the most difficult of all mitzvot is ‘Honor your father and your mother….'” (Tanhuma Ekev, 2). Caring for elders in our families demands more resources than any caregiver can muster alone. Just as we have learned that it takes a village to raise a child, so too, may we come to realize that it takes an entire community to care for frail elders and their caregivers.