“You really stepped up to the plate with your parents,” said someone to me the other day. I tend to intercept this kind of praise as quickly as I can, because things were not and seldom are that simple. I didn’t step up to any plates, a series of plates smashed into me. This is how it happens to many carers, I believe. And caring can be too clean and uncomplicated a term for what will follow. Permit me to explain…
When my elderly father first became really properly ill it coincided with me really properly running out of luck (or life catching up with me, perhaps). So when I moved back in with my parents it was with a side order of compassion alongside a main course of self-made necessity and a tall glass of despair. I wanted to do it and believed I ought to, but I could never really trust my motives since I also had nowhere else to go.
As I reflected on the conflicts of the job — and there was plenty of time for that — I came to understand that for almost anyone parenting a parent few things are what they seem. There is a sense of righteous symmetry about feeding those who first fed us and so forth, but when life turns upside down matters are far from tidy, a lot of heavy furniture — physical and emotional — gets moved around.
On one level nothing had changed. Though I might be doing the cooking this time, when we sat down to eat (way back when everyone could still make it to the table) the core dynamics between the three of us remained the same as in the 1970s. It was as if we were older actors stuck in the same ancient play. Happily for us that play has its share of comic scenes and warmth but the inner friction between the five-year-old and 50-year-old me brought an extra layer of fatigue to the front lines.
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Speaking of warmth, there are few aspects of personal care enhanced by a working environment whose occupants and sponsors insist the heating be kept at 30 degrees except for a few outbreaks of open windowed freedom in July and August. This was expensive then and would be untenable now but arguing with people about how hot it is versus how hot if feels can take up a lot of time and, ironically, energy. If I touched the thermostat my father would look at me as if it was an assassination attempt and the more this happens the more such things do cross one’s mind.
This becomes the crux of it — what kind of person am I if I find this so hard? The answer, I am happy to say, is normal, but it took me a while to work this out and through. Every situation has its natural geniuses, but we tend not to measure ourselves by them. I’ve seen Usain Bolt run but it didn’t trigger a lot of inner dialogue about my own rate of progress down the high street. Likewise there are people who are patient rivers of empathic compassion. I am not one of them, but these days I try not to let that get between me and what the situation seems to warrant. While we tend to accept our physical limitations we can give ourselves hell about not being kinder and in so doing forget the most useful part of that equation when others are depending on us is sometimes how kind we are to ourselves.
There is nothing wrong with finding hard work difficult — and caring for your parents is that. The famed spiritual teacher Ram Dass once said: “If you think you’re enlightened, go spend a week with your family.” Make that years, throw in illness and the prolonged sense of impending loss (the terminal trajectory is one of multiple factors meaning this is not, despite what folk will understandably assert, like looking after a baby) and things do fray.
From friction though comes possibility and even the power to change more than just an adult diaper. Am I a better person for having done this? Maybe. Would I do it again? I’ll let you know when it’s done. One irony is that while you are indisputably useful in these scenarios — if you have struggled with a sense of purpose (and who hasn’t?) — then there’s the risk of overdoing one’s oversight of another’s late life. Humans are complex, we can even get addicted to activities we don’t like. Some regard professional carers as a cop out; I would have called the cops without them and consider them a blessing. As one explained to me, some things are easier when you don’t have 50 years of memory tied on to the present problem.
When it got really tough I and my siblings would lament that we just wanted to be sons and daughters again, as though “carer” were an entirely separate category of being — and it was in considering this that something clicked for me. Certain words and stories are useful — I kept myself together by keeping a journal which became the book — but they can also bind us. As with one’s clothes if we try to keep these definitions, “son”, “daughter”, “parent”, “family”, too pristine, it limits what we can do with them.
The most important word we need to stay flexible around while caring might even be love itself. The emotional mess of the role far trumps the actual laundry (which is saying something). If we are not honest about or at least aware of the painful components of close relationships then that denial will only add to the fiasco. In elderly parental care our formative bonds are not just changing but ending. Whatever our religious or spiritual persuasion most of us are in a tenuous contract with mortality which can start to fall apart when we come up close to its realities. An idealistic vision of love will not cover what we go through then, but these contradictions do not make us any less loving, rather they might make our love more realistic than idealistic — and that has to be good for everyone.
It was a therapist who pointed out that what I was facing through this collision of care and personal circumstances was an identity crisis. But the thing about identity is we are never alone; we are in truth a unit formed under the influence and absence of others, especially those known colloquially as “our folks”. The rearrangement, reversals, and potential redundancy of such potent and pre-existing mythologies under the heading of “care” is not a thing to be taken lightly.
If we’re lucky then we might see that the imperfection, one could go further — the impossibility — of perfect care is a reflection of how we ourselves were raised, imperfectly, but with the best intentions of those on hand at the time. When we can let go of some of that, some of the past we might be holding on to to, then we get to be a little freer in what we are attempting to do now.
When my father could no longer get out of his chair he retreated into a world of movies; westerns, war films, gangster pictures, all of which offered a quick and decisive ending for those at the heart of the drama. It was a stark contrast from what life seemed to be offering us on the other side of the screen. Him immobile, my mum (older but fitter) restless and unable to hear the dialogue, me wondering how I’d got there and how long it would go on for. Over time though it dawned on me, whatever we were doing, this was it, our submarine movie, our space flight, our Wembley, and Waterloo — Game of Thrones with a walking frame and commode. Life made no sense but we made do. Once I stopped wishing I were somewhere else I got better at being where I was needed. The pressure of it all being so personal was also a kind of liberation. I came to understand I was the best and the worst person for the job at the same time, and that was okay. Like someone on my dad’s TV I picked up the badge I never wanted, pinned it on and walked back into the old saloon one more time.
The Reluctant Carer: Dispatches from the Edge of Life by The Reluctant Carer is published by Macmillan on June 23rd, £16.99.