You can follow the string of my “Geriatric Doctor-In-Law” stories by searching through the posts here. Basically my wife Robin’s mum Liz and dad Nigel became quite frail over the last several years, at roughly the same time, with all sorts of health, psychological, and general care problems. I was quite used to these as a doctor but I had almost no experience dealing with them as a family member. What a difference being on the other side of the fence. At times on both sides of the fence.
Well, since my last post about a trial of therapy for Liz, both Robin’s parents have died, with only a few months of time passing between the ends of their lives. First, Liz, and then Nigel. And I think it’s fair to say that they both died “well”. Symptoms were controlled, no unnecessary or futile investigation or treatment occurred, and their wishes were respected.
So did I learn anything from these Adventures that I didn’t already know?
1. Even as an experienced health professional with decades of caring for elderly people one has absolutely no conception of what it feels like to experience frailty, that stage of life to which there is no successor, with one’s own folks. I think of Gawande’s recent book Being Mortal, in which a brilliant and very successful physician admits that in caring for his dying father he had no idea what to do.
2. As a caregiver and “advocate” you will really have to insist on all sorts of things that run counter to prevailing ideas in “the system” and to traditional healthcare practice. Staying at home. Not going to the hospital when you get sick. Opting for comfort over rescue. And the strange thing of course is that I’ve been talking about all those things for a very long time (and so has “the system”) but I had no idea how difficult they can be to accomplish, especially if it puts you in conflict with family members and formerly trusted professional health advisors.
3. Caring for people at home as opposed to residential care (nursing home) is expensive. But it’s cheaper than continuing with futile-intervention care involving specialist referrals, guidelines-driven investigations, preventive treatment, and being in and out of hospital. Cheaper, and also better. But be careful: if you live where healthcare is publicly-funded home care is cheaper for the system, not necessarily – actually very rarely – for you. So it’s just better.
4. Dementia, with its progressive memory loss and personality and behaviour quirks really changes people. My demented father-in-law not only could’t walk or clean himself after going to to the toilet, he was a completely different man. Angry, at times withdrawn, and with no insight. Whereas before he was the soul of equanimity, the life of the party even when there was no party, and brilliantly intuitive. These differences are permanent, and they have a huge effect on relationships.
5. It must be much more difficult than I ever imagined to be a caregiver or responsible one for an old person descending into frailty, when you aren’t a health professional, you’re unfamiliar with the system, you don’t have much money, you can’t avoid getting tied up in conflict with family members, and you have to sort out differing advice from doctors and everybody else. We were lucky. Nearly everybody facing caring for frailty is in a much less favoured situation.
I’m more convinced than ever that we’ve got to make the current popularity of “patient-centered” care more than just administrative-language window-dressing. It’s going to take a lot of determination to do that once the preoccupation of system decision-makers moves on to the next buzz idea. So far it’s mostly talk. I still see, every working day, too many people whose time is short and to whom nobody is listening.