CARING FOR THE DYING ELDERLY: EMBRACING UNCERTAINTY

I think that when you work with the dying elderly, especially if they have dementia, you need to embrace uncertainty.

You want to say, he's like this. Or. this is what you do for her. Or, this is how the day goes. And yeah, maybe you can, say that I mean, for a day or three.

Yes, this is what he is like. And this also is what he is like. And today he is like this, but that may change tomorrow, or even when the sun goes down.

There is a a path for the dying. Martha Jo Atkins in her excellent book 'Signposts for Dying: What You Need to Know' sets this out very beautifully and in my limited experience it seems to hold true. I really recommend this book if you are caring for a dying person.

The problem is, the path for the dying, of the gradual shutting down to the world, is their path. It's not yours unless you are dying yourself, and what is hard is the path takes the dying person away from you. So trying to make order or sense out of this only sticks the foot of your ego in their way.

Eat this, you say. I made it for you. Just a mouth full. How about we watch the news. You always liked the news. I bought you a book. Remember you would read this author. Have a beer. Have a wheat grass shot. Have a chocolate. Engage with me. Turn back time for me. Be as you were for me. We say these things for our benefit, and I mean that kindly. We say it from love and sorrow and these are both wonderful things.

If we are working in a paid capacity with the very elderly or the dying elderly, our identities as caregivers depend on our ability to do just that, to care. We care. We prepare luscious food that gets half eaten, because our client has no appetite any more. We make a nice cuppa and then our client falls asleep over it. We buy a clock so the client can see the time, but the client can no longer make sense of the digits. We want to make a difference. There is often no difference to make, Dying is a mysteriously stochastic process and it is not amenable to even the kindest imposition of narrative. It is we who must embrace the uncertainty.

If we have cared for babies over time, we know how they change and how there are awkward transitional periods. We can spend several weeks with a one year old who needs two naps a day still but wants only one. Or a six month old who has slept through the night once, but won't do it again. Or they ate broccoli yesterday but today they look at you with incredulity.  Our very elderly and dying can be like that. Yesterday she got up at seven, ate two plates of porridge and watched TV. Today she has no interest in anything. Yesterday he didn't recognize me and couldn't follow any directions. Today he greeted me by name and asked after my son. What do we make of this? Is this how it's going to be? How can we tell?

I think the best we can do involves a fearless and non judgmental search for what matters. Does a shower today matter? Does it matter if she eats only cake for dinner? Does a gentle touch and the sun on his back matter? This search needs to happen over and over as things change. And I say fearless because we are adjusting and readjusting and this takes courage and self reflection at the times when we are struggling ourselves. I am sure that quality care does make a difference, and that kindness and patience and good humour are the caregiver's lasting legacy. We just do best when we get out of the way of ourselves and our own expectation.