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.


CoralieN said...

Thank you Richard for your honesty once again. Am looking forward to seeing you and Ms T one day in September if we can find a termite mound. Cheers to you both.

Brett Dalton said...

This articulates so much. My Partner is not in danger of dying, just chronic pain... all day...every day...

It hard to understand how lonely I feel even thought I work from home and spend most days sitting 10 feet away from her.

That wall of pain is something that I can't explain to other people and find it difficult not to get angry about at times. Illness never just affect the person involved, the whole family feels it.

Thankyou for writing this.

Brett Dalton said...

thankyou for articulating this.

My Partner is in pain every day and I've never been able to explain to her or anyone else why I can be lonely when I work from home and sit 10 feet away from here most days all day.

Anonymous said...

My husband has .M.S and I care for him all the time. He has had it for 20 years. I have no friends anymore, just him and the loneliness gets to me everyday. People who see me say I'm bubbly and happy go lucky. Im not. I feel so guilty because Im terrified of being on my own without him as he is the only friend I have now. Im constantly watching him to make sure he's ok and notice every little change in him but won't admit he's changing to anyone else. I feel like I'm grieving even though he's still here and don't know how to cope......I take my dog for a walk and cry every time thinking this is how it will be. I don't think I will be able to go on without him. Does anyone else feel this guilty?

Anonymous said...

The guilt is the worst part. Even when you want something for yourself which you know is good for you it is hard to put aside.

It's also hard for me not to feel guilty when I feel hopeless every day that thing won't get better or more to the point will only get worse. It normal and understandable but that doesn't make our any easier.

Don't be to hard on yourself. That's all I can say.

Richard Chirgwin said...


Thanks for your comments in return.

To Anon in particular: yes, I feel that guilty, and yes, the grieving is there as well. I wish I could be more encouraging than merely to say you're not alone.