In a flash, your life can go from tickety-boo to arsy-varsy, never to return to a comfortable, even boring, normal. Maybe it’s a cancer diagnosis or losing ones entire life savings. Rich or poor, famous or unknown, no one is immune to the vagaries of life. Everyone fears them. Sooner or later, they bite you on the arse.
This week, after years of testing, more testing and misdiagnosis, my husband, Rhys, was diagnosed with advanced Guillain-Barré Syndrome. In a flash, I am officially my husband’s caregiver. It’s a title I’ve long fought not because I wasn’t doing it already, but because it’s no-win situation.
To me, being a caregiver is to constantly fail to reach the high standards I set for myself. It’s to live in constant guilt. To fail both as a caregiver and simultaneously as a wife.
That’s why I stated above that caregiver is basically an untenable position. ‘Right’ lies exactly nowhere. You may do your best but it may either be not enough or much too much.
All I know, is that on Rhys’ bad days, I want to scream. On Rhys’ good days, I want to scream. I can’t seem to get this caregiving thing right.
Somedays, Rhys wakes hungry and savors his eggs, toast and tea. Other days, the mere sight of buttered toast makes his stomach churn. There’s no way to anticipate it, no rhyme or reason to it and all my efforts to be a good wife and better carer lie in ashes at my feet. He rarely feels hunger and it’s tempting to let meal times come and go as the cooker and I aren’t on the best of terms at the best of times. And these are decidedly not the best of times.
But that would make me a bad wife and a worse carer.
Finding the balance between helpfulness and emasculation is also a hopeless balancing act. Every time Rhys announces ‘I’m going to…’ I automatically leap to my feet with a cry of ‘I’ll do it’ or ‘I’ll fetch it’. Sometimes he hates it, feeling himself stuck in his chair, emasculated and infantilized. On bad days, he welcomes it.
But so often I get it wrong. I’m too helpful on his good days and not helpful enough on his bad days. Either way, I feel guilty.
When he’s in pain, he’s tetchy. When he’s on pain medication, he’s almost euphoric, building air castles, making plans, asking me if I want to do this or that. What do I say?
If I point out that his plans are all quite physically impossible for someone with Guillain-Barré and would strain our already strained pocketbooks, it would be cruel. Stuck in a chair, day after day, Rhys has only his dreams. As W. B. Yeats wrote:
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.
So I lie. I tread softly and feign enthusiasm for this air castle or that wild idea, knowing, even hoping for the sake of our chequing account, that it will come to nought.
Once I told Rhys of my ‘harmless fibbing’ and he was incensed. He believes our relationship should be based on 100% honesty. No acting. No playing a part.
That too is untenable. Honesty is impossible in this situation. Whether I lie or don’t lie, either choice makes me a bad wife.
Still, I’m one of the lucky caregivers who can slip away for time alone to recharge my emotional batteries. But then I feel so disloyal. Rhys has no escape, no time off from Guillain-Barré.
While we hope Rhys makes a full recovery, the disease was caught late. There’s a chance he may become severely paralysed….or worse. I know I should capitalise on every moment with him now but …
He talks incessantly about his illness, his pain, on and on in a never-ending loop. Recounting all the times he was stolen from and cheated in life. Bitterly telling me, for the umpteenth time, how his ex screwed him over in their divorce. Grieving years of Parental Alienation from his children. Stories I’ve heard so many times, I could retell them, verbatim, in my sleep. No actress on the stage ever worked harder than me, trying desperately to look interested, smile, respond in an engaged manner.
But I really want to scream.
So I slip away, squandering the precious moments left with Rhys because I simply can’t bear to be with the man I love at the moment. The man who is suffering. Yet I, his carer in perfect health and with no pain whatsoever, go AWOL. Hide in the attic dormer. Read a book. Shop on eBay. Anything to escape from my reality where I want to scream, to cry, to drop the act.
But I mustn’t. If I drop the act, I break his heart. If I tell him I’m acting, I break his heart.
Untenable position. Damned if I do, damned if I don’t.
And then well meaning friends say ‘Take care of yourself’.
Yes, and how exactly is one supposed to do that? They certainly don’t lift a finger to help.
The guilt is incessant. ‘Right ‘ lies nowhere. Success is a moot point. There is no success as a caregiver.
I can’t do right by Rhys and by myself. So I must choose.
I choose him. Of course, I choose Rhys. There was never any question about that. It’s untenable to do otherwise. I love him. ‘For better for worse, for richer for poorer…’
I still want to scream, but it’s not allowed.
The life of a caregiver is utterly untenable.
Photo by timefornurses