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No Caregiver Is an Island, Though It May Seem That Way

Not all caregivers are the same, but all need support

By Carol Levine

(Next Avenue invited all our 2016 Influencers in Aging to write essays about the one thing they would like to change about aging in America. This is one of the essays.)

Credit: Getty Images

Here is what we know: The population is aging. Older adults typically need caregivers at some point and for some aspects of their lives. Most often, their caregivers are unpaid family members, friends and others they trust. These caregivers need help, too.

Here is what we don’t know: What does “help” mean? Caregivers don’t fit a unique profile: They are young/old, female/male/transgender, highly educated/ struggle with literacy, financially secure/living in poverty, urban/rural, living with the person needing care/caring from a distance.

Resources for Caregivers May Not ‘Fit’

If any help is offered a caregiver, too often it is one-size-fits-all. The menu includes what is available, rather than what a particular caregiver wants or needs. A support group? Check. Home-delivered meals? Check. A waiting list for respite services? Check. All good things, but they may not be the specific type of help a caregiver could desperately use.

The picture gets blurrier when we move on to more complicated problems like, “How do I get my siblings to do their share or at least not interfere?” or “Can I get paid to take care of my mother?”

Concerns may also include issues like these: “My father fires every home care worker I hire.” “I haven’t told my employer about my caregiving, and I’m getting pushback from my colleagues because of my frequent absences.” “I just want to take good care of my sister and still have a life that isn’t all caregiving. HELP!”

How Health Care Providers Can Be More Helpful

Sweeping proposals for a national strategy for caregiving and more government funding are important but are not likely to bring relief any time soon. Caregiver stress and burnout come from many different sources. Dealing with the rapidly changing health care environment is one of the most significant areas in which health care providers can make a difference right now.

It is not possible to remove all stress from a doctor visit or a hospital stay, but health professionals should do their best to make each encounter courteous, considerate and compassionate. These are the attitudes that caregivers value and that can make a difference in establishing trust and follow-through on care plans. More providers (but certainly not all) are working to incorporate caregivers into the health care team. And proposed federal regulations (as well as some existing state laws and regulations) make that a requirement for a hospital discharge.


How Friends and Family Can Be More Helpful

Friends and family members can do a lot to help unpaid caregivers, too. The most common approach is, “Call me if you need help.” But a better approach is, “I can sit with Dad on Saturday while you shop or go to a movie.” A specific offer whose terms can be negotiated is more likely to be accepted.

Caregivers can take this one step further by asking for help with a specific task that is within the person’s capacity; it might not involve substituting for the caregiver, but could be doing errands or providing transportation.

How Agencies, Firms and Policymakers Can Be More Helpful

Community agencies — those that serve older adults and those that don’t — can look at their offerings and see what might be adapted for caregivers and marketed to them. It might be classes in something unrelated to caregiving or sessions on legal and financial issues.

Employers should look at their policies related to family leave and offer outside assistance for particular needs.

Policymakers should ensure that caregivers are included as beneficiaries in their own right in health care programs.

We are all past, present, or future caregivers or care recipients. Bringing John Donne into the 21 century, “Never ask for whom the smartphone tolls: it tolls for thee.”

Carol Levine is a senior fellow at United Hospital Fund in New York City and former UHF's Families and Health Care Project director. She has written several books about caregiving, including Navigating Your Later Years For Dummies. (Wiley and AARP). She welcomes comments and questions at [email protected] Read More
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