I’ve been thinking about long-term care a lot in recent days. The tragedy of the high death toll from the pandemic has certainly served to highlight the issues in the system, but it also points the way to possible future ways of looking at elder care differently.
Right now, too often the solution to how to care for the infirm or frail–usually, but not always, the elderly–has focused on institutional settings. These range from caring, well-run facilities to what amounts to warehousing situations. There are lots of for-profit players in the industry, and with a for-profit model comes a lot of issues–many assume that a for-profit centre might mean getting a better standard of care in exchange for a higher fee, when the opposite may actually be the case when profit is the driving motive. The public system of long-term care facilities features long waiting lists, often with not a lot of control over where a person waiting for a spot might end up. Non-medical staff at these facilities, who do the bulk of the work to actually care for the residents, are often badly underpaid.
Most seniors and their families will do anything to avoid “going into a home”, but at a certain point needs may go beyond what untrained family members can handle, particularly if dementia and significant medical issues are present.
All of these issues have been made manifest in the present process. Long-term care homes often house residents in shared rooms (unless they can pay for a private room), and because there are long waiting lists for places at these residences, they’re usually at capacity, with not a lot of ability to isolate residents who are seriously ill. These residences usually do have procedures in place for lockdowns when serious illnesses are detected among the residents, but these have been geared more to the less-infectious outbreaks of the past, as have the stockpiles and protocols for use of personal protective equipment.
A few ideas have struck me as I considered these issues. My parents paid a fairly significant amount over the years to purchase long-term care insurance. As a result, when my mother had Alzheimer’s, she stayed at home, with a nurse present on a 9-5 basis. My dad was able to manage her needs during the rest of the day. Mom was bedridden due to having broken her leg some time after her diagnosis, which made her situation both easier (she was less mobile) and more complicated (she was physically frail) to manage. Dad later took advantage of this insurance after his own cancer diagnosis to hire someone to help with meal prep and light household work.
My mother-in-law was cared for by my sister-in-law as she aged and gradually declined from a combination of macular degeneration, arthritis, and, eventually, dementia. Eventually, however, her needs became too much to handle and she moved into long-term care, where she was resident for only a little over a year before her death at age 92.
What often can make a huge difference for seniors as they begin to require additional care is whether they have family able to help. At the same time, this can put a huge amount of stress on these family members, whether they are spouses who are dealing with their own aging challenges, or children needing to manage their own families and jobs. Long-term care insurance can help with that–but that’s usually the purvey of those in well-paying jobs. As we have seen during the current crisis, long-term care is often a last resort, and families often try their best to maintain a relationship with their loved ones–but it’s difficult (and even more so during the current crisis).
I was struck yesterday by the account of a long-term care facility in France that responded to the threat by essentially imposing a complete and total lockdown–including staff, who volunteered to sleep on cots and mattresses on office floors and in common areas. They were able to partition off the kitchen area so staff there could come and go, but about 3/4 of the rest of the staff opted to stay onsite. And that got me thinking: What if part of the solution were to house at least a portion of the support staff in the same building as the residents?
Or take it even a little farther–what if there were more communities built around long-term care and retirement homes? These communities could include family members wishing to stay in close proximity to their loved ones, workers at the facilities, and even just friends or those wishing to support the care of elders through volunteering. We rarely have large extended families any more–but could we began to build around families of choice, friends who decide to grow old together and support each other? Some of my polyamorous friends would seem to have the right idea here, as have other sets of friends who have relocated to the same town, but could it go even farther than that? We have food and housing co-ops. Could we take it farther? How do we encourage the building of larger communities that can help care for each other, end-to-end? (Yes, I know–sounds like a commune, but I’m not necessarily talking about complete sharing of property and income, or any kind of religious motivation.)
Because it seems to me that one of the things we are discovering about ourselves during this pandemic is how frayed our community bonds are. So many of us feel isolated and alone–not just our seniors. We have been taught to value people based on their income. Too often we’re pitted against each other, egged on to resent the support given to those less privileged or in crisis, and to denigrate the low-paid or unpaid work done by so many to keep society running. But at the same time, it’s these very bonds that are proving so important–and in many cases, strengthening through the crisis. We are suddenly more aware of how interdependent we are.