The sorry truth is that no matter how rich, brilliant or powerful we are, if we live long enough, we’ll end up living in a room. On the way to that room, we’ll have to adjust to losing independence as we transition to finally needing assistance with basic daily activities.
For people who’ve lived according to their own desires for fifty years, these transitions are traumatic. In Another Country, Mary Pipher describes the condition of old people who’ve lost friends, family, physical capacity and finally all their familiar surroundings as being identical to PTSD.
The transition from independence to dependence often happens in a crisis-caused flurry of activity – not the best environment for making good decisions. Believing that forewarned is forearmed, I’ve sought information to enable planning in advance. (Sadly, this information increased rather than allayed my concerns.)
What is Independence?
As you age, your choice of a living space is constrained by health, finances, and location. As long as you’re independent, you can live anywhere you want and can afford – a house, apartment, condo, mobile home, houseboat, tree house, whatever. But as you lose independence, choices become more limited.
Healthcare professionals and insurance companies define independence as the ability to perform “activities of daily living” (ADLs): bathing, dressing, eating, toileting, transferring (getting into and out of bed, chairs, etc.), and remaining continent. When you’re unable to manage two or more ADLs, you’re a candidate for assisted living.
Independence also requires functional abilities like housekeeping, managing money, and above all, driving. For many Americans, loss of independence begins with a diminished ability to drive.
By the time you stop driving, chances are you’ll be ready to stop doing other things as well: home maintenance, cooking three meals a day, housecleaning. “Independent Living” facilities for seniors have evolved to meet this need. By “facility,” I mean a place that offers, minimally, meals, housekeeping, group activities, and transportation to stores, appointments, and entertainment venues. At one time, this was considered “assisted living.” Today, “assisted living” implies a higher level of assistance.)
There are many things you can do to stay independent (Staying Independent), but the path of aging typically involves diminishing independence. The following sequence of living situations tracks the decline of health and capabilities.
These stages are fluid, referring to constellations of services as much as physical locations. Moreover, each level is trying to expand its limits: communities are increasing services so people can stay in their homes longer; independent living facilities are bringing in assisted living services; assisted living facilities are contracting for skilled nursing services; and nursing homes are offering hospice care.
Most seniors want to make as few moves as possible, so “aging in place” seems like a good idea. Unfortunately, our health care systems and residential options are not designed to support it. Providers of assistance with ADLs are different from those who provide skilled nursing care who are different from those providing hospice services. As a result, coordination problems are common.
These range from annoyances like nurses arriving to provide medical care during dinner to serious overreactions, such as elders being shipped off to emergency rooms because the person authorized to apply a bandaid is unavailable.
Each level of service provider is restricted in what they can do, occasionally with disastrous consequences. This was stunningly illustrated in a 2013 news story about a nurse who refused to provide or allow CPR at a Continuing Care Retirement Community because it went beyond the medical services allowed in that wing. (For further examples and discussion, check out Assisted Living vs. Hospice.)
The lack of seamlessness between levels of service is largely a result of Medicare‘s insistence on covering only “medical” services. That opened a window for businesses to provide non-medical home health aides at lower cost. Good for business, but not good for the elderly.
Long-Term Care
When in our downward trajectory we reach the point of being unable to take care of ourselves and unlikely to improve, we’re in the situation of needing “long-term care.” Long-term care means custodial care: human-powered life support. It needn’t even be long-term, as in statements like, “Two-thirds of all seniors will need long-term care at some point.”
Long-term care may be intermediate level care (largely custodial), skilled care (largely medical), dementia/special needs care, or a combination of these.
Long-term care is the wild card in post-retirement planning. Though prolonged long-term care is everybody’s nightmare, it’s becoming the norm in our society as we continue to reduce deaths from cancer and organ failure. Over 60% of today’s retirees are expected to need long-term care for multiple years.
In his heart-breaking account of his mother’s later years, Michael Wolff suggests that “By promoting longevity and technologically inhibiting death, we have created a new biological status held by an ever-growing part of the nation, a no-exit state … that is nearly as remote from life as death, but which, unlike death, requires vast service … and resources.”
Long-term care occurs in that netherworld which includes assisted living facilities, nursing homes, and hospitals. Elders are sometimes shunted from one to another as their condition waxes and wanes and their various insurers and shelter providers argue over where they belong.
Our society is ill-prepared for the reality of extended old age. For better or worse, the onslaught of baby boomers will necessitate some rapid adjustments. It’s unfortunate that this is happening at a time of national stinginess, so that instead of being able to glory in our success at prolonging life, we’re left in dismay at the unintended consequences. These consequences are not unforeseen, but our institutions seem paralyzed and unable to address them.
In the best case scenario, all kinds of hybrid approaches and facilities will be attempted. The worst case, I’ll leave to your imagination.