Readers of my website will understand that over the last couple of years I’ve had a dose of care of frailty from the consumer’s side, once removed. My wife’s parents, Liz and Nigel (both in their 80s) have become more or less mentally and mobility impaired, more or less at the same time. I can’t believe how very different day-to-day caregiving, decision-making, and facing uncertainty is, from what I’ve been doing for many years: medical care of just the same kind of frail old people.
Through the last many months, my wife Robin and her sisters have been struggling to get Nigel out of a nursing home (see my other post on that), and then (lately) Liz out of the acute care hospital. It’s easy enough to pull your car up to the front door of such a place, transfer somebody from a wheelchair to the front seat, and drive away. But where are you going to take them?
Both of my in-laws need 24-hour supervision. Dementia and stroke have taken away Nigel’s formerly magnificent judgment. Liz, always practical and determined, is now confused at night and liable to be on the floor, and neither of them is independently safe getting on and off the toilet. To spring them out of institutions, we pretty well had to duplicate at home what the institutions were offering. Minus the ever-changing personnel, hospital-acquired diarrhea, administration that functions like a head severed from its body, noise, smell, rules rules rules, and absolutely terrifying food.
There is a program in our region (Vancouver Coastal) which will partly fund care at home, if the family sets up a corporation and organizes the care. Predictably, you have to get through endless paperwork, along with meetings, phone conferences, and a process of on-the-job learning both for us and for the administrative people who don’t see this program set up all that frequently. It’s frustrating, time-consuming, and it can get expensive. My wife Robin is a plodder, but too many times lately I’ve seen her almost grind to a stop.
But (drum roll) we did it! Three weeks ago, both of our frail elders moved into their adored little house at RobertsCreek. They had renovated it in 1992 preserving the interior of the original rustic cabin built by Liz’s father and brothers in the 1940s. The first few nights were no joke: both of our “residents” up and down, in and out of the bathroom and not always making it in time, and the hired caregiver unhappy and exhausted. But yesterday, Good Friday, the sun shone, Georgia Strait was like a sheet of glass, and Liz and Nigel sat half the afternoon on their patio with family and other visitors, after a string of two or three tolerable quiet nights. Sunshiners.
For years I’ve been, I see in retrospect, a self-righteous cheerleader for keeping frail old people at home, so now I get to practice what I’ve been preaching. It’s easy to look down your nose at adult children whose priorities are preserving their inheritance and avoiding the inconvenience of care. But counting on the proceeds of the sale of the family home to get your kids through school or retire yourself, and needing to have a life in the face of the challenges of late middle age can’t just be ignored. I’ve got rid of some of the creeping sense of hypocrisy I used to experience advising patients and families about running necessary risks, living with mistakes, facing problems you can’t handle, and having dozens of questions that never quite get answered.
Okay, I get that Robin’s family has the physical setup, expertise on hand, and to some extent the money to do all this. Not everybody has the same kind of opportunity. What about an elderly person with no family or friends? Or no money? What about families far away, in conflict, overwhelmed with their own problems, or just not interested? “The system” is full of holes. Only once we can reliably promise a lonely disabled person what she wants and needs, including a safe and comfortable death at home, will we have a public care of frailty we can be proud of. But with little tentative steps I think we’re headed in the right direction.
As I’ve told patients and audiences a hundred times, frailty consists of a downhill slide, punctuated by unpredictable crises. Caregiver suddenly quits, old person falls and can’t get up, breathlessness develops at night, opinions radically and angrily differ over what to do. Liz and Nigel will get sick or more confused at inconvenient times, need to have their medication changed and then changed again, and eventually they will die, probably leaving us with lingering worries about whether we did everything we could. But based on their preference that’s going to happen at home. It was pretty satisfying yesterday to sit with them in the sunshine. Looking back I guess we will be glad we didn’t have to snap an institutional hatch over the end of their lives, and that we did for them what they did for my wife and her sisters: loved them and kept them comfortable and safe when they couldn’t do it for themselves.