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En español | Family caregiving is a beautiful expression of love and togetherness. At the same time, caregivers can often feel very much alone — overwhelmed and underprepared for the tasks they need to perform. As caregivers deal with physical, emotional and financial stress, they deserve and need respect and support.
For the last seven years of my husband’s life, as he battled Parkinson’s, I was his primary caregiver. When I traveled for my job, our friends or relatives would come stay and keep him company, make dinner and ensure he received his medications. I was fortunate that I could pay for outside care when I needed it. Many families cannot.
Today there are more than 40 million versions of this story in the United States — people carrying out a labor of love but sometimes bent under the weight of caregiving. That is why I was so pleased that Congress last year created the Family Caregiving Advisory Council. The council will make recommendations to the secretary of the U.S. Department of Health and Human Services on effective models of family caregiving and support to family caregivers.
And now I am honored to have been named to that council. I will call upon my years of experience as a nurse, a nursing instructor and a caregiver as I assume that role, one that is especially important at a time when half of family caregivers are carrying out medical or nursing tasks for individuals with challenges in physical, cognitive and behavioral health.
According to a recent report from AARP, “millions of family members, friends and neighbors [provide] complex care at home. … It is presumed that every home is a potential hospital and every service that the person needs can be provided by an unpaid family member, with only occasional visits by a primary care provider, nurse or therapist.”
In this new world of caregiving, hospitals and health care professionals need to provide instruction to caregivers. And employers should help employees balance the demands of caregiving. I am proud that AARP offers employees 80 hours a year of paid caregiving leave. Governments have a key role as well: AARP supports a tax credit of up to $3,000 for family caregivers.
Please write to me with your caregiving experiences, tips and suggestions. I promise you that we at AARP will read every letter to help shape our thinking — and to inform my work as a member of the Family Caregiving Advisory Council.