Lynn Feinberg
Everyone I know has at least one personal story about the overwhelming stress and frustration in trying to arrange, coordinate or provide the best possible care for an aging parent, spouse, grandparent, other older relative or friend, not to mention the spiraling costs of health care.
More than three decades of research clearly show that family caregiving is a public health issue — that family members who provide care to older adults with chronic or disabling health conditions are themselves at risk — emotionally, physically and financially — particularly when the care is for a loved one with Alzheimer’s disease or another form of dementia.
Given our current economic recession, the financial aspects of family caregiving can be particularly distressing for the estimated 34 million Americans — most of whom are women — who provide care for an older (50+) family member or friend. The financial strain on this group, as they try to manage work, family, and caregiving responsibilities, was highlighted in a recent article in the New York Times. “Taking Care of Parents Also Means Taking Care of Finances” describes the growing numbers of Americans who are facing the “financial squeeze that can come from caring for elderly parents.”
The costs can be significant. Caregivers to persons age 50 and older spent an average of $5,531 per year out-of-pocket in 2007 for expenses ranging from household goods, food and meals, travel and transportation costs, to medical care co-pays and prescription medications.
According to a recent study by the National Alliance for Caregiving and Evercare, family caregivers have experienced the economic downturn in major ways. Consider these sobering statistics:
- 50% of working caregivers (that is, those who have worked at some point while providing care in the past 12 months) said they were less comfortable taking time off from work to provide care;
- One in three working caregivers said they had to work more hours or get another job;
- One in six (15%) said that the economic downturn has caused them to lose their job or be laid off;
- Six out of 10 caregivers who reported increasing their out-of-pocket spending for caregiving also reported having difficulty paying for their own basic care needs; and
- 63% say they are saving less for their own retirement.
When it happens to you, when it becomes a personal issue in your own family, you are more likely to act.
For years at the National Partnership, we have talked about helping Americans meet the dual demands of work and family. A lot of people think about working parents when they hear those words, but millions of working people in this country are caring for frail, older relatives. The time has come to organize family caregivers as a strong and powerful force for meaningful and lasting change.
Stories about the real-life experiences of older adults and their family caregivers can help increase attention to the urgent need for better and more affordable, coordinated care.
Your story can make a difference!
My parents were living in Florida when my mother started showing symptoms of dementia. I decided they would be better off near us, in Rockville, MD. My dad agreed. I was fortunate to get an apartment at the Revitz House, a Section 8 Housing complex near my home. She was able to function there because of my dad’s wonderful care and attention. She also attended a day care center. My mother rapidly deteriorated and I had to make the awful decision to move her to the Hebrew Home. The day we moved her in was one of the saddest days of my dad’s and my life. While she received good care, we knew this was the end of the line. My father visited her 3 times a day–he was was racked with guilt. My mother lived there for 11 years! Sadly, my father had a heart attack and died in 1992–preceding her by 9 years. He truly died of a broken heart. What a helpless feeling to watch my mother deteriorate and know I was powerless to make things better. With the help of my family, we visited frequently and provided her with love and affection. I have spoken to friends and acquaintances who are in similar situations. When there isn’t enough income to hire temporary caregivers, the stress can become unbearable. Growing old and sick in America can indeed be a heartbreaking experience.
Thanks for shining a light on this critical issue. Organizing the collective voice, and wisdom, of millions of family caregivers can help those of us caught up in the day-to-day work of caregiving feel connected and empowered.
And, as for this being a workplace issue: one of my colleagues at work wanted to swap hints, tips and experiences with other long-distance family caregivers who were helping their parents. She thought a few people would sign up for her proposed support group; dozens of co-workers stepped forward. One of the many important messages that this group has given voice to is, “You are not alone.” Advocacy begins with that simple fact.
Family caregiving IS a public health issue, and it is an economic issue.