Sunday, June 23, 2013

Being a carer is lonely

So here it actually is: the story from my side, instead of me telling Ms T's story.

It's like this. And fuck it's difficult.

The life of the carer is lonely. Really, really, lonely.

How can this be? I'm with Ms T, and since 1987 we've put a lot of effort into trying to live our lives so we were in the same place as much of our days as we could manage. When she spent 12 weeks in hospital, I spent most of them tucked away in a corner of her room, working while she slept or watched the hospital TV (thank heavens for mobile broadband), returning home to cook dinners for my sons, and to sleep.

(An aside. Our sons were too young to have this happen to them. They were brilliant, strong, supportive, and became independent instead of going off the rails. I love and admire them.)

And there have been whole years when we haven't spent a night apart, and have only spent a handful of waking hours when we weren't in the same place.

How can this get lonely?


We generally wake about 5:30 am, which is when her overnight painkillers wear off. By 6:20, I'm awake and she's back in bed and who the hell do I talk to? So I start my day's work.

Ms T will emerge before 7:45 am and nearly always fetches me breakfast – unless I get too damn hungry to function. She gets her own breakfast, preps lunch for the son that's still in high school, runs through the rest of her morning routine, and takes her morning medications.

And then returns to bed, because she's not like you and is exhausted by the morning rituals.

Even then, she's not well enough to get through the day without retreating to the bedroom again in the afternoon.

She's the one that's sick, after all: her immune system is as dangerous to her as if she had received someone else's heart and lungs. If it's let off the hook, it is a killer, and the drugs needed to damp it are dangerous, and are exhausting. They don't discriminate: while fulfilling their appointed task of keeping her immune system under control, they also exhaust her, attack her digestion, distract her attention …

and leave me alone, in the same way that other carers have, as the penalty of their particular devotion, the reward of loneliness.

I detest being absent from Ms T even for hours. A night apart is a misery. We travel together even if it would be better for her to stay at home, and she will sleep in the car because the M4 is soporiphic.

But, and I wish my mother was alive so I could tell her I understood, the life of the carer becomes lonely. 

When my father was Alzheimer-mad, her sole relief in daily life was a labrador whose devotion was such that he would walk around Katoomba with dad, until his paws bled, and still be ready to do it again tomorrow, and the day after, until the day he (the dog) died.

Mum waited alone at home, because there was no telling when they would return.

Ms T and I, we'll get by. I have a dear friend, someone who treats me with the frivolity I deserve and crave, who loves me god-knows-why, who will put up with me for occasional coffee-dates, and there's my respite.

But it makes me desperately sad to think of all those carers whose circumstance is worse than mine, whose partners or siblings or parents need so much more care, whose loves are as deep and desperate, and whose respite never arrives.

When that topic next arises in the public debate – which is infrequent – think of it this way.

Those people asking for a tiny amount of free time from their caring aren't asking for much. They want to know that:

  • if they have a coffee-date, they don't need to worry that their love will die while they're away.
  • they can be sent away from home for work for one or two nights, without fretting more than they would if they were at home.
And a thousand other small reliefs that would make the carer's life less lonely.

We, those who care, do it because we love. This is not some kind of rage against those we love. Ms T loved me when I was young and daggy and didn't believe that a woman with her beauty, intelligence and education could spare a second thought for me.

But I wish, to the point of tears, that I could have the woman I married back with me. Just for a week, before she dies. And I care for her in illness – “in sickness and in health” – against the hope that we'll walk the Den Fenella again, that we'll do a loud punk gig together and dance, that we'll have both the health and the money for our last bottle of Grange together, that we'll fly to Scotland to see a dear friend of the family.

That's the desperate last hope of every carer. And our – me and my fellow carers – know we might not get our hopes, that we might instead have to fulfil, without the reward of joy, the promise we all make:

I will hold you until you die. I will carry you to the grave.”

We love. That's why we do it.