This is a critical moment for family caregivers in our country. As I write this, legislators in Washington are determining whether to provide funding support for the one in five Americans struggling to care for sick or disabled loved ones at home. It’s not looking good. Despite wide bipartisan support in communities for providing relief to caregivers, the funding amount proposed in the bill has already been whittled down to $150 billion from $440 billion.
I recently produced a short documentary called Caregiver: A Love Story, which chronicles the travails of Rick Tash as he struggled to keep up with the increasing needs of his dying wife at home over the last nine weeks of her life. We see him deteriorate in parallel with her, growing more harried and exhausted as she became increasingly immobilized and unresponsive. While he had the support of an excellent hospice, it was not enough to help him run the marathon of caregiving.
What is alarming is that I didn’t understand the magnitude of this issue until I embedded with their family to make a film. If I—a palliative care physician who discharges patients home with new caregivers every day—didn’t know, who else doesn’t?
Family caregiver burden is an invisible crisis that will devastate our nation if we don’t solve it soon. With almost no national, state, or local funding allotted to support them, more than thirty percent of family caregivers use up their savings on caregiving tasks. This is not surprising, as caregivers must support every detail of another person’s life without extra income, support or training. And most working caregivers’ earning potential is compromised as they struggle to keep up with their day jobs.
This crisis is escalating rapidly. With approximately 10,000 Baby Boomers turning 65 every day, more people are at home needing support for age-related chronic illness and disabilities. Yet, at the same time, there are fewer caregivers available as the average American family is smaller and more geographically dispersed than ever before.
Professional caregiving support is out of reach for most, as it is expensive and hard to find. We see the burden of family caregiving increasingly falling on the shoulders of fewer and fewer people. Their duties are often grisly and difficult, such as toileting and bathing patients who can no longer clean themselves. Additionally, sixty percent of caregivers are now performing tasks that doctors and nurses used to do, like managing complex medications, giving injections, and taking care of wounds.