En español | I know the challenges of caregiving firsthand. I took care of my husband of 16 years during his fight with Parkinson's disease until he passed away.
It was hard physically and emotionally for both of us. I worked every day, and when I traveled for my job, my friends or my husband's relatives would come stay with him to keep him company, make dinner and be sure he received his meds. Or, I paid for outside care. I was fortunate that I was in a position to be able to do that. But I know many families are not.
That is why I am so honored to represent AARP on the new Family Caregiving Advisory Council announced by the Department of Health and Human Services/Administration for Community Living. Caregiving is a top priority for AARP and a matter of profound importance for me. It is not a burden. I was born and raised in the U.S. Virgin Islands, and I grew up watching my parents care for older adult family members. We had one nursing home available, but people cared for each other because they wanted the loved one to stay in the community. Perhaps that model of human caring is why I chose the field of nursing 54 years ago.
Back in those days, nurses were sent into communities to perform home care and help families. That was our job and we were paid to do it. Nowadays family members and friends are being asked to take on complex medical tasks for the loved ones in their care. These are jobs they're not trained to do — like wound care and medication management — but they're doing it as a labor of love and because they want their family member to age where they want.
The goal of the council is to develop and recommend a national caregiving strategy to the Secretary of Health and Human Services and find ways to improve coordination and support across government programs. While all that is necessary, what I also like about this role is that the council is made up of individuals from all walks of life. They're family caregivers, employers, older adults who need long-term services and veterans, among others.
The Family Caregiving Advisory Council knows that caregiving is more than dollars and cents; it also includes the “cost” to the family members and the family constellation — the time involved and the emotional stress. We don't want anybody to feel guilty about saying, “I need respite today.” We also don't want caregivers to be so stressed out that they can't cope with their everyday lives.
Most of the care given in this country is done by non-paid individuals, not professionals. So, it's family members, spouses, children, parents, neighbors and friends who sandwich in care before and after work, often while nurturing their own growing families. If that care had to be provided by public or private funding it would cost Americans billions of dollars. AARP is committed to easing the burdens on family caregivers.
It is clear that no one group or person can solve this complex nationwide problem. By bringing together people on the advisory council from the private sector, public sector, state and local government — all with different needs and perspectives — we can think through the problems facing caregivers today. Then we can develop and offer solutions for real change.
So, tell me: What caregiving problems are you facing with your loved ones? What questions and concerns should the Family Caregiving Advisory Council address?
More on Advocating for Caregivers
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- Resources, tips and advice for family caregivers