Loneliness

A letter arrives from a friend in Canada. This wise, funny, feisty woman has been a lifeline for me for so long and her letters always cheer me up and keep me stronger. She reminds me to do art and laugh and not wait around for life to roll up with stunning opportunities on a golden platter.

Now her partner has been diagnosed with a rare and debilitating condition and she has become a carer and she’s pole-axed by the shock of it.

She has written to ask me for tips. How do you do it? How do you become a care-giver (as they say across the Atlantic) for someone you love and not have your whole relationship change out of all knowledge? How do you spend so much time catering for their needs and not lose yourself? How do you cope?

Sometimes she has scolded me about not making enough time for art and writing and fun because my time is so swallowed up by caring. Now she’s experiencing that for herself, scared and grieving for her partner and wondering what has happened to her life. Suddenly it’s me who’s the encouraging one, reminding her to do art and laugh and somehow make time for herself.

As a friend said recently, someone who suddenly found herself looking after her dad after a stroke that quickly led to full-on raving dementia – “Even nice people don’t seem to really get it, until they’ve actually been there themselves.”

And that is why caring is lonely.

The only people who really get it are other carers and they are mostly too busy with their own care-giving to do much more than give you a virtual hug on Twitter. (Oh, but thank goddess for Twitter. Like Susie’s letters, it has been SUCH a lifeline. )

Mostly the rest of the world just doesn’t see how hard you’re working and how worried and stressed you are and what you’re giving up on behalf of another person. Even if you try to explain (and personally, I hate having to spell it out because it’s hard even to begin to unravel the cumulative factor of all the hundred small things you might do in a day’s caring, let alone the big ones, and anyway I don’t want to dwell on the negatives), then it is unreal to anyone who has not been in your shoes. And that is a lonely feeling.

Even paid carers don’t get it – on my return from holiday last week, one of Nick’s carers asked why I had not got away for longer or gone with my husband.

“Because one of us has to be here for Nick…” I said, and she looked faintly surprised.

Her team see Nick four times a day and their service is gradually improving, but nine times out of ten I am still clearing up after they have been, putting their used gloves in the bin, wiping the sticky table that Nick sits at all day, cleaning custard off his glasses and picking lumps of poo out of the washing machine (I did all of these yesterday)

But since their HDA training things really have improved and on the whole they do a pretty good job.

Nevertheless, they come in to a home where the shopping has been done and put away in the fridge, the wine is stashed away to be doled out daily, a new delivery ordered weekly so it never runs out; where the shirts are magically ironed, the loo roll replenished, torn finger and toe nails clipped, and where Nick’s ongoing audio-visual and technical issues are dealt with daily.

And that’s just the frilly stuff, the stuff that basically anyone could do; the harder part is the admin, the chasing of benefits and council services, the appointment making and attending and the dealing with the neighbour and the repairs and trying to get funding for another holiday and another wheelchair, and co-ordinating with the care agency and looking for a PA. The financial dealings and power of attorney documentation and the cataloguing of family photographs. Trying to organise social activities and outings and skyping with Nick’s children and at the end of the day, being with my brother and simply hanging out together.

All this is the day to day maintenance stuff; I haven’t even begun with the crisis management. Or the guilt. It all takes up a lot of time and few organisations are geared to make things easy for carers.  It’s difficult to delegate or share so when you're really up to your neck in it, listening to automated music as your call inches slowly up the queue, you can feel very lonely indeed.

In Radio 4’s excellent programme "The Anatomy of Loneliness", carers are mentioned as one of the loneliest groups in society, especially if they’re female. Caring takes place behind closed doors, you spend all day slaving just to stay on the spot, and however hard you work your social status is pitifully low. Of course you're going to feel isolated.  
I think for me, one of the saddest things is not having time for other people. It's just the last thing on the list. I can long for company in theory but just feel so completely drained that all I really want is to be left alone. 
Also, I find that when it's been a tough day, I might not get a breathing space til late at night; it takes time away from the world to regain my strength and identity away from caring, and sometimes it can be hard to switch heads and connect with even really good friends. 
I am so, so lucky to have an understanding partner and that counts for an awful lot. My heart goes out to the people who are caring for their spouse so they have no-one to sound off to at the end of the day - that must be the loneliest situation of all. 

But we do need friends, and social interaction. Again, thank goddess then for Twitter, but also for letter writing and postcards and just smiling at strangers and being kind. As often as possible, be kind. 
And as the movie producer said, Show Not Tell. It has helped me feel less lonely to write this blog, but also to introduce friends to my brother and involve them in the caring process. When someone else sees the situation first hand, you have a witness as well as someone to share the load, and it can create a new intimacy to bring them in to your reality. They see Nick as a person then too. Really doesn't work with everyone, I know, and out of all the people I know, only three have returned to visit Nick with me again, but it is still worth a try. 

And never underestimate the healing power of cats on the internet (or dogs, if you prefer) - again, I'm lucky to have a teenage son with an endless supply of links to funny sites (my current favourite is crap taxidermy ) that sooner or later have me roaring with laughter. I don't do animal cruelty, but there are some very daft critters out there.