by Kathleen Kelly, Executive Director, Family Caregiver Alliance
This time of year, our thoughts turn to family and friends, celebrating relationships and giving to others. I would like to list my own personal recommendations on much needed gifts that family caregivers could really use in the New Year.
Gift #1: Respite
Seriously. If we are serious about supporting families, let’s give those who care continuously for their family members unable to care for themselves, two weeks of respite a year . . . in exchange for the remaining fifty they spend caring. Everyone needs a substantial break—caregivers most of all.
Gift #2: Financial Security
Sadly, many family caregivers have to quit their jobs to care for ailing family members who can no longer manage on their own, and lack the financial means to pay for professional caregiving. With that, there is a loss of accrual of Social Security credits that can mean significantly lower income in retirement. Especially hard hit are women in lower income careers—and women remain the primary caregivers. Family caregivers should not have to choose between being there for family and having something to retire on themselves so that their own children aren’t forced to quit work to care for them as they age, (contributing to a continuing, frustrating cycle). But unfortunately, depending on the severity of a loved one’s illness, choosing to care for family can often mean facing a bleak economic future—especially since most understand that their efforts mean less cost to society. What we need is a way for those who find no other option than to leave employment to care for ill or aging family, to continue to accrue Social Security credits enabling them to live in dignity in their own “golden years.” It’s acknowledging the value of them and their efforts to their loved one and society.
Gift #3: A Trained Workforce
We hear about too many family caregivers handling medical-related tasks for their loved one that are ideally handled by trained professionals. We do these caregivers and their care recipients a huge disservice to not push for an increase in thorough, up-to-date and compassionate medical training for all levels of staff in the medical profession. Training for the workforce takes a number of forms: medical staff who are trained to include family caregivers as part of the care team; medical specialists, nurses and social workers who understand geriatric care issues and cognitive impairments; aides who are trained to handle behavioral challenges, and the basic challenge of taking just a bit of time combined with a bit of patience to listen to the patient, his or her family and especially, the family caregiver who knows that person best.
Gift #4: Patient and Family Centered Care
Family caregivers need health and social service systems that value informal caregiving. This means putting in place a formalized process for identifying caregivers, and assessing the unique needs of families. But it is not only assessment; it is a set of services and supports that should be tailored to each patient and their particular family situation that needs to be provided.
Gift #5: Paid Family Leave
So far, only two states offer paid family leave to employed caregivers. Every state should have this self-funded option through which those who need to care for family can temporarily leave their jobs to take care of relatives. The sticking point is the public will to pass legislation in every state and the development of the mechanism to collect and disburse funds within the state. In years past, the Obama Administration requested $10 million be set aside for states to develop those systems. Let’s make it our collective New Year’s resolution to get moving on this in 2013.