I have heard many stories from 24/7 carers over the years, which I am able to relate to strongly, being one myself.
Much praise is heaped on the heads of those struggling to cope heroically with impossibly demanding situations, with little, or even no, effective support. We are wonderful, as was confirmed recently in the government's Carers' Review, which offered carers generally sweet bugger all, of any consequence.
I want to get just a little controversial about 24/7 caring. I know why we do it. However, the question of whether we should do it remains.
For me, and I speak exclusively for myself, 24/7 caring is a largely unmitigated evil, ultimately destructive of the personalities of carer and caree alike. I fully acknowledge the potential for disagreement, but I believe that somebody had to say it.
3 comments:
I agree that caring is destructive but not always of the personality. The personality can remain intact but caring can at the same time be be destructive of physical and social functioning.
On a personal level, I've found that caring has shown me how psychologically strong I can be, that I have a core of contentment that I can access at any time that I didn't know existed and that I can endure social isolation and even enjoy solitude. It has, though, been utterly physically destructive and I have virtually no social or intellectual life and it would be true to say that I've lost most, if not all, of my social skills. Don't come to our home, you won't even be offered a cup of coffee, it's only when someone has left that I realise that I have failed in even the most basic social functioning.
Caring can be perhaps more easily destructive of the personality of the person cared for, because of the nature of caring it's all too easy to learn to be dependent, even self-centred and selfish but I think that can be attributable to the underlying personality traits of the individual.
Ultimately caring can, of course, be destructive of the personalities of both carer and caree but this isn't always the case and surely, Dugsie, the impact of caring on the personality has more to do with the individual and circumstances than with the acts of caring and being cared for themselves?
I don’t think many people could manage 24/7 together without it causing problems…and both the carer and caree through no fault of their own are restricted and have their lives limited by the carees illness/disability….it is a frustrating situation for both and it can become all too easy to take out our frustrations on each other. It also creates and unequal power base in the relationship…it is probably natural that either the caree feels a burden sometimes or forgets that the carer has needs too…..and it is hard not to feel resentful if your own needs as a person are not recognised by your caree especially at times when you are struggling yourself…and not to feel resentful/gulity if you are a caree placed in a situation where you have no choice but to rely on someone who you know resents caring for you…
I think as well that when we are in such close contact all the time our mood swings affect each other profoundly……I know if I am feeling quiet my husband gets anxious and if he is feeling irritable I start to feel resentful
All our situations as you say are different. Over the past 18 years I have been a carer I have found that the situation is never static…at times we cope and we are happy at others I feel I am hanging on to the edge of a precipice by my finger nails. The hardest times are if my husband is in the grip of delusions and seems oblivious to my feelings….I have come close to hating him at the same time as loving him sometimes…I don’t think I could cope 24/7 if he was like that all the while…I would have to get more help. I also find I cope much better if everything else is going ok in my own life… extra pressure/grief/poor health can make caring so much harder. It is hard to cope with your own feelings health problems sometimes without having the added responsibility of caring for someone else 24/7.
I do find the few hours respite my husband and I get from each other a great help in remaining sane…and my husband seems to get a lot out of it too…it is good for him to have some independence from me….it restores the balance in our relationship a little.
In the end I think we have coped because somehow we have managed to keep our sense of humour and respect for each other…and we still love each other (and that is luck not virtue…you can’t make yourself love anyone). I don’t know what it must be like to stay with someone out of pity or duty…soul destroying for both I would imagine.
For me it is difficult after all this time to divorce caring from my relationship or being a carer from who I am . There is no doubt that husband’s illness has changed both of us …I think different life experiences bring out different traits of our personality…caring has made me discover good and bad things in mine sometimes I am proud of myself for how I have coped sometimes I would say ‘could do better’ but I think I am still me … a good person I hope…and I admire and respect my husband for how he has coped… …I don’t think being a carer/caree has destroyed either of us…but it has changed us…..and I can see how under different circumstances a carer could feel the way that you do about 24/7 caring…..and my heart goes out to all carers and carees placed in that situation and I feel angry at a society that does nothing to help and support them.
Important points here about the predominance of the nuclar family model - 24/7 is fine if there is a large family to share the care, a huge burden if we have a two person household.
Co-housing offers some radical alternatives - especially for carers. Care can be shared if people are willing to sacrifice a little of their privacy and live co-operatively in co-housing complexes with others, thereby sharing the care with neighbours or even employees. I don't think that communal utopian living as a concept is dead - far from it - maybe it offers a real and positive alternative.
In the meantime I enjoy my caring role, and am happy to share it with my extended family as we have done for nearly twenty years. We are not deprived, or poor, or sick: we enjoy all the good things of life. I couldn't envisage taking it on solo.
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