Sunday, 2 April 2017

Do I care?

My wife being disabled, I am the not-very-proud possessor of the description 'carer' - a word I don't much care for (if you'll excuse the pun). It's not a job for which I would have applied; indeed, it's not a job for which I am much suited. All the same, it's a job I signed up for more than fifty years ago. Of course, back then the words "for richer, for poorer; in sickness and in health" were just that - words. How many of us, when in our twenties, have ever given thought to what life will be like half a century hence?

Please don't think that as I type this I am wallowing in self-pity. That most certainly is not the case. I know full well that there are many, many people who are in situations far worse than mine, and who have been in those situations far longer than I. That, naturally, applies also to the persons for whom the carers care.

But I wonder how many of us, when we see a disabled person with a carer, give a thought to what life is like for the carer? The disability affects the carer as well as the person being cared for. Not to anything like the same extent, obviously, but often in ways that other people just don't realise. Let me simply state a couple of facts and this will be just that - a statement of fact, not a plea for sympathy.

I can't recall the last time I enjoyed an uninterrupted night's sleep. Most nights I am out of bed, helping the Old Bat to the bathroom, twice. Occasionally it's just once, but there are nights when it is three times. Granted, the loss of 20 or 30 minutes sleep is nothing that can't be made up - but it is the disturbance, the waking every two or three hours, that is exhausting. Then there is the amount of time spent during the day simply waiting; waiting for her to finish eating long after me, waiting while she does part of a job so that I can get on with the next part (which she is unable to do). Or, if not actually waiting, walking with her very slowly so that a walk that should take just two or three minutes actually takes nearly ten.

As I said earlier, I know there are people far, far worse off than I am. I have recently read a book (My Life in his Paws by Wendy Hilling) written by a lady who has EB, a rare skin condition which also means her throat is very narrow and she can stop breathing at any time. She and her husband had to take it in turns to sleep for two hours at a time.

In making a plea for people to consider the carers as well as the disabled, I don't mean to suggest that the disabled are not in a much worse situation that the carers. Far from it. I just think that the person behind the wheelchair is very often invisible.


Sarah said...

I'm a firm believer that all things are relative BP. I think that we often worry too much that we will seem complaining or uncaring by suggesting that life is sometimes difficult. There will always be people who we can say are in a far worse position than ourselves but in doing that we are not always allowing ourselves to acknowledge that life can be tough.

I think it's important to be kind to ourselves as well as others. I'm not a natural carers but if the time comes when I'm needed in that respect then I hope I will step up to the plate. That doesn't mean I'll suddenly become a natural carer it just means that I care enough to take on the role to the best of my ability.

I thinks it's perfectly acceptable to struggle with it at times and to appreciate that it isn't something we would have chosen just as the person who is being cared for wouldn't have chosen to need care.

I think it's a good thing to be honest about it and it certainly doesn't make you any less caring.

Carers have a tough job and it's important that it's acknowledged.

(not necessarily your) Uncle Skip said...

It's a thankless task, but the rewards are many.
It really helps when there are opportunities to interact with others instead of being isolated.
I empathize and partly understand your situation.
All the best thoughts for you and herself.

Jenny Woolf said...

I have often thought the same and am always very sympathetic to carers. I have seen how difficult it is, and how limiting and stressful. There are organisations for carers but I am sure you know about them.

Sharon said...

As a former socialworker in the USA I have seen too many carers end up as the one in the hospital. Please find yourself a time to relax, renew yourself as much as you can. Respite services can be a large benefit. One man I know of went upstairs to paint (he was an artist) while someone stayed to care for his wife. That was his way of renewing.