November is the month designated as Family Caregivers Month to honor the countless number of people who offer critical support to family, friends, and neighbors to help them age in place. This unpaid workforce is estimated to contribute around $470B worth of services each year. Family caregivers are the backbone of homecare services. Without them, our nation would not have the capacity to care for those who are disabled or older and unable to live independently.
I know many, if not most of us, have had some experience as a caregiver. Those experiences range in the degree of challenge they presented. Perhaps, one of the most challenging circumstances for a caregiver is watching a loved one decline with Alzheimer's Disease(AD). I recall a couple in their mid 70's who have been close friends of mine for years. About 3 years ago, the husband was diagnosed with AD. He was aware of his diagnosis and had an idea of what would happen as his mother had died of AD. Over the next 3 years, his wife was his caregiver and spent every moment with him - from the time he was an independent and active person, to someone who occasionally forgot who she was, to when he did not know at all who she was. She would take him to one or two familiar restaurants in the neighborhood where he felt comfortable so he would have an opportunity to "get out." She cared for him when he forgot how to place his feet on steps to ascend or descend or how to get into or out of a car. She cared for him at the end when he could no longer swallow, and she pleaded with the doctors to put him on hospice so he could be comfortable in his last days. I asked her at one point what she did for herself and did she get out to some of her favorite events or places. She responded, "No - my job now is taking care of my husband." This is just one example of millions of stories we could gather from people who have been caregivers.
The physical and emotional impact of caregiving is dramatic, as are the financial implications for caregivers who have to leave their jobs to care for parents or spouses or physically or emotionally challenged children. When people leave the workforce, not only do they lose their salaries, but their contributions to social security are no longer being made, therefore reducing the payments they would have received upon retirement. Their ability to return to the workforce in the same position when their caregiving responsibilities end is always in doubt. To better support family caregivers, Congress passed the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act in 2018, establishing the Family Caregiving Advisory Council tasked with creating the country's first national Family Caregiver Strategy. In 2021, this council delivered key recommendations for policies to support family caregivers, including a call for financial and workplace security and expanding home and community-based services, among other actions. Although the original Build Back Better Budget had allocated more than $400B for home and community-based services, it was reduced to about $135B in the budget which is still not approved. We all need to have a voice in supporting and advocating for the unpaid, unheralded workforce of volunteers called family caregivers whose work is so essential today and will continue to be so in the future as our population rapidly ages.
Let's all remember the tremendous work of family caregivers and say "Thank you."