My grandparents loved to watch Jeopardy, every night. They’d even record it on the vhs if they were going out to catch the early bird specials. The more you risk the more you could win. The rules are simple, competition with smarts and calculated risks – the language of my grandparents. They were savvy and cheap – yet able to enjoy the fruit of their risks and long term investments to survive even the extraction of the nursing home industry. Dignity on a blue plate special. Dignity at home for as long as possible. Dignity was never up for grabs; it always seemed to be part of the plan. Building it into the fabric of their choices until they could no longer make choices.
After institutionalized care became necessary – I began to wonder if dignity is even possible. It wasn’t really the dementia and diminished capacity that ate away at the edifice of my grandparents dignity. Even in the nursing home, paying over $8000 per month to live in an “assisted living” memory care unit, dignity and security were never guaranteed. You see, these places, these horrible places accept you in early stages when the individual is still capable of dressing, pissing and eating by themselves. They may mention that they do not provide assistance with daily living, but that is not really a concern in the beginning. As your loved one declines and needs more help, they are now stuck in both a money trap and a lottery.
The burden of care is retained by the family – they are told to hire a private pay caregiver who can then come in to do all those things that your $8000 monthly fee are not covering. Another option was to leave – to go to a SNF (skilled nursing facility). Most people with dementia do not tolerate change very well, so hire another caregiver – until the money runs out. Dementia is a chronic terminal disease with a highly variable prognosis – that means that you can live anywhere from 2-20 years after a diagnosis is made. An average 4 years living at $8000 per month is $384,000 not including many extras. Who is prepared to pay this amount of money?