It has been a year since my father first started showing symptoms of congestive heart failure. His symptoms started last August when he was visiting me from his home in Richmond, Virginia. His symptoms worsened as he did his daily walk, and necessitated a visit to the local emergency room. Last September his cardiologist gave him 3-6 months to live. My first blog post “A Practical Man and Modern Medicine” was about the end of life decisions my father and I were facing—and my frustrations over the fragmentation of the health care system as we wended our way through the labyrinth. The term “rough crossings” for these health care transitions is an apt one. It was difficult for me and I am a health care insider. He was briefly hospitalized in September at the same university hospital where I ‘trained’ as a nurse and nurse practitioner. I coordinated his home nursing care and then (briefly) hospice care—and convinced my father to give up driving. I thanked bad boy Clinton and my university for FMLA (Family Medical Leave Act) so that I could be with my father during what we were told were his final months of life.
A year later, my father is back here in Seattle for a visit. He ‘graduated’ from hospice and home heath after only a few weeks—he was too healthy and independent. So much for medical predictions of mortality. He has come out to Seattle every year for the past fifteen years. He leaves a clunky pair of walking shoes here so he doesn’t have to pack them. A few weeks ago, while he was still in Virginia, he developed pneumonia. He refused to be put in the hospital for it, so my brother nursed him back to health—and then put him on a direct flight from DC to Seattle. Every day since he arrived (rain or shine—it’s Seattle, so it is mostly rain), my father straps on his walking shoes, grabs the lightweight REI collapsible stool I gave him, and heads out for a 30-minute walk. When he gets short of breath, he sits down on his stool for a while and checks out the neighborhood gardens. Back in Richmond, he continues to live at home, relying on neighbors, church friends, my brother and sister-in-law to help out with things like getting groceries and driving him to the bank. He continues to have a huge garden in his backyard which he tends every day. He rides his stationary bicycle nine miles a day and walks outside when it’s not too hot. A retired minister, he visits “really old” people in nursing homes and vows never to live in one: “They just sit there all day and look really bored.” He has a point, and one that is supported by research: aging in place can be cheaper and have better outcomes than the alternatives of nursing homes.
Most people prefer to stay in their own homes or apartments for as long as possible. There is a bourgeoning business related to smart home design and various technologies to support people aging in place. Besides the home monitor, which measures my father’s blood pressure, oxygen saturation and heart rate daily—and which he loves—there are now smart toilets (which measure urine sugar levels) and smart rugs (assume they are wall-to-wall—detect changes in an older person’s gait for fall prevention). But then there is the issue of informal care (unpaid care) by relatives and friends, because that is what allows aging in place to not be dying alone in place.
Current estimates of the economic value of informal care in the US puts it at $306 billion a year, compared with nursing home care spending ($115 billion/year) and formal home health spending ($43 billion/year). Source: RWJ and Peter Arno, “Economic Value of Family Caregiving, 2006. Upwards of 70% of the informal care workers are female, although the proportion of male caregivers is steadily increasing. Anecdotally, I think that FMLA is partly responsible for this evening out of the gender disparity in caregiving—an explicit purpose of the act. Also, just as in my parents’ case, older married men are becoming the informal caregivers for their wives, as men begin to outlive women. There is growing recognition of the rewards—but also of the burdens—of informal caregiving. Most informal caregivers are spouses or adult children of aging parents. They rarely have any training or experience in caregiving of the sort needed for aging in place, and it is difficult to find needed support for the work they do. Informal caregivers have the stress of lost wages/lost retirement savings, the stress and isolation and physical demands of in-home care, and they often neglect their own health.
Nurses have long been the backbone of home care services. Home nursing services have increased in the US with the growing geriatric population, as well as with the reduction in hospital stays for all patients. Nurses, along with medical social workers have become geriatric case managers, an unlicensed and unregulated ‘profession’ providing care coordination and links to needed community-based services for geriatric patients and their families. There is a National Association of Professional Geriatric Case Managers with a website and searchable database. I checked today and there a four Geriatric Case Managers in Richmond, two of them are RNs and two are social workers. From what I understand, their services are not reimbursable by Medicare or any other health insurance. I’m not convinced of the value of their services.
The Affordable Care Act included some provisions for home care. For instance, the CLASS Act (Community Living Assistance Services and Supports) is a voluntary insurance program for home care through a voluntary payroll deduction plan. It was scheduled to go into place January 1, 2011. After a five year vesting period it would pay up to $50/day for non-medical services and supports necessary to maintain community residence. Currently, Congress is trying to repeal this act.
Helpful websites/blogs:
Health Affairs Blog, “Informal Caregiving by and for Older Adults” by Donna Wagner and Emiko Takag (Feb 16th 2010)
Aginginplace.com website and blog by Patrick Roden, RN, PhD
Aging Well Consortium website and blog by Liz Taylor, Seattle-area journalist and advocate on aging issues. An advocate of ‘intentional aging.’
I like your story very much. Nurses role cannot be explained in words. We should appreciate them for their deed of serving people.
This was so fabulous I posted it on twitter! Glad your dad rebounded.
We’re making progress in health reform, but much more is needed, including finding ways to compensate informal caregivers who spend an average of 22 hours/week carrying for loved ones and ease their burden. That burden totals $480B/year total cost in lost worker productivity, reduced earning capacity & retirement income, and increases in their own physical & emotional health costs? That’s about 3.2% of the U.S. GDP in 2009 and more than was paid out in Medicaid in that year.