by Kathleen Kelly, Executive Director,
Family Caregiver Alliance
In the last blog post I suggested five gifts family caregivers could use right now: 2 weeks of respite, Social Security credits for those who leave their job to provide care, a trained workforce and so on. Practical items to be sure. Today we turn to those gifts that capture public attention or change policy in a favorable direction. Here are my personal favorites in this category:
Gift # 6: A National Day Without Family Caregivers
We’ve already set aside the month of November to honor family caregivers, but what if we were to have a national day without family caregivers? What if we got every elected public official to take care of our relatives for a day? Do you think they might look at these issues differently after a day of providing personal care, medication management, insurance wrangling, preparation of meals for special diets and fielding calls from siblings critiquing our handling of Mom’s care? What does that national one day of care cost? $129 million (arrived at via the $47 billion estimated value of informal care, divided by 365 days.)
Gift #7: Double the Funding for the National Family Caregiver Support Program
Doubling the funding would bring the amount to just over $300 million—or about $4.75 for every family caregiver in the country. Not a bad investment for an average value of informal care per year of $8000 per family. Hey!—Wait a minute . . . doubling the appropriation would amount to a little over 2 days of care nationally (see Gift #6). Do you think after a National Day without Family Caregivers, policy makers might see the value in supporting caregiving families? Doubling the support would be a boon to caregiving families everywhere.
Gift #8: Undercover Boss: Caregiver Edition
For a day, have the boss exchange places with an employee who juggles job, family and caregiving responsibilities. A sampling of daily challenges:
- Rise early and get Mom ready for the day,
- Wait for the morning aide, then
- Fight the traffic to get to work. While at work,
- Answer phone calls from Mom on:
- where her glasses are,
- why you moved the extra set of car keys,
- when you’re coming home, (etc.)
- Run home at lunch to make sure Mom takes her meds (since you live in a state without nurse delegated tasks to home health aides). Oh no! The afternoon aide has not arrived!
- Go into panic mode and call the home health agency to get a replacement—(and where are those darn power point slides for the presentation this afternoon!?!) . . . And so the list goes.
For this really to work, these back-up caregivers-for-a-day would, of course, be on their own . . . no spouses, administrative assistants or private case managers allowed to help.
Gift #9: A Seat at the National Policy Table Designated for Family Caregivers
We need an Institute of Medicine report on family caregiving that would raise the visibility of the issue and chart a course of future action. IOM reports often become the benchmark for implementation activities for years to come and carry the authority of solid recommendations for actions. Also, we need a National Center on Caregiving that would collect best practices, conduct research, provide technical assistance to health and social service systems on how best to integrate families into the care system and answer calls from caregivers across the country seeking help and advice on care issues.
Gift #10: An Understanding That Caregiving is Just Part of Life—Which We All Will Share in to Some Degree, Some Day . . .
And perhaps this is the most important message of all, especially for those in policy-making roles: at some point, all of us will be affected by illness or disability in our families or ourselves. The role of caregiver, is the giving of assistance, perhaps the receiving of assistance in the future. Often given without reservations, sometimes begrudgingly, it is done out of love, respect, loyalty, duty or expectation of reciprocity. Most simply, caregiving is about human relationships. It affects not just us personally but all in our tight network of family, our extended web of friends, the communities in which we reside, and ultimately, our entire shared society.
This list of ten gifts we hope can serve as a reminder—to those of you who know a caregiver—of the importance these compassionate folks serve in our lives; but for those of you reading this who are caregivers, remember that it is not selfish to give to ourselves too, throughout this season of giving and beyond. A family caregiver burned out from constant stress is not only shortchanging their relative, they may also be shortening their own life. Taking care of yourself may just be the best gift you will unwrap this holiday season.
The warmest of wishes for a wonderful holiday season and happy and healthy New Year to your family from ours here at Family Caregiver Alliance. -KK