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New Member - Carers UK Forum

New Member

Tell us a bit about yourself here.
Hi, I'm new to this and find it difficult, majority of the time, to talk about myself. :blush: but I will try to tell you about my life as a carer.
I have been a carer for over twenty years now, I hadn't realised it had been so long, until recently.
I first cared for my Mother, then my Father. Both of whom I could never get a straight answer from the medical profession about what was exactly wrong with them. Especially my Father, one minute I was told he had a depressive illness, the next its dementia and which ever one I mentioned I was told the opposite.
Now I am caring for my Brother who has severe Ankylosing Spondylitis, is in constant pain and gradually finding it harder and harder to do everyday tasks.
I think that over the years my own health has been affected, both mentally and psychically.
Wow, Shirley, that is a lot of caring. Many of us carers are guilty of neglecting our own needs.
Welcome to the forum. I hope you find it supportive and friendly. You can post as little or as much about yourself and your caring situation. Sometimes it helps to have a good rant and other times just post about day to day trivia.

oh my Lord, Sheryl! It's said that when God finds something we do well, He gives us loads more of it to do - and it looks like He's found out you do caring well....

That said, yes, you must take care of yourself too. Whatever the illnesses and afflictions of your family, you, too, have a right to a decent life, and just because relatives are not well does not automatically mean that all their care has to fall on YOU.

I take it that your parents are no more, and that it is now your brother that is taking your time and attention (through no fault of his own of course). How much can you assess the situation, and see what might be possible in terms of other people sharing his care with you, whether that is other relatives, or, indeed, outside carers? I do hope that you won't have to have sole responsibility for his care which, sadly, seems set to increase in needs as his horrible illness progresses.

All the best possible to you both, in such a distressing situation - Jenny
Hi Shirley,
My husband and I spent many years caring for my son with severe learning difficulties and four elderly parents, all with very severe health problems. My husband died after a major heart attack and I developed a life threatening illness. However much family want us to help, it is vital to set limits on what we are able to do for others. I wish I'd been firmer when the parents told the doctors and social workers that we would do things for them, without asking us. My mum also has very severe back problems, again diagnosis has varied from arthritis, spondylosis, osteo porosis, but the end result is that she is bent to the waist, unable to straighten up, now confined to a wheelchair, she needs to be hoisted in and out of bed, catheterised as the spine is pressing on vital nerves to the bladder. It is absolutely vital that you insist that your brother doesn't rely entirely on you. Has he had a needs assessment from social services? Have you had a carers assessment recently? Various benefits should be available. After major surgery I couldn't do anything practical for mum for a long time, instead I made sure that the services organised were working well.
I suspect that there may be a psychological tendency in all of us to adopt a kind of 'least worst' strategy when it comes to illness. ie, that whoever is 'least worst' gets to look after anyone in the family who is 'more worse' than the 'least worst'.

But 'least worst' is a relative term, not an absolute one. It's all too easy for someone who is 'badly ill/disabled' to assume that they are so much worse off than whoever it is that is not as badly ill/disabled that the less badly ill/disabled should therefore put aside their own 'minor' (!) problems for the sake of the person with the greater problems. And all too often the less badly ill/disabled person also thinks that! (Or is pressured, subtly or not so subtly!, into thinking it.)

The less worse off member of the family therefore feels unnaturally guilty if they don't take on the task of looking after anyone and everyone who is more worse off than they are.....

I know, alas, that I won't be the only person here to say this, but the grim truth is that carees can, unfortunately, become very 'self-focussed'. In a way, that's utterly understandable - they are coping with 'bad things' happening to them, usually through no fault of their own (not always though - a lot of illness, especially in old age, is caused by lifestyle abuse in younger life!). But it can all too easily mean that carees blithely discount any illnesses their carers may have, on the grounds that 'well, its no where near as bad as what I put up with!'.

BUT, just because a carer's health is not as bad as their caree's, doesn't mean their own poor health can be ignored, or discounted.

I may also, I'm afraid, not be the only person here (though we are a rarer bunch!) to argue that our 'duty of care' towards our parents is, to be blunt, limited. I don't think children were put into this world to spend what can easily become years of their lives being nursemaids to their own parents when their parents become very elderly (and, often, very demanding and self-focussed to boot!). Our parents have 'had' their own lives, and now it is our turn to have ours (hopefully our parents weren't themselves expected to look after THEIR parents, and give up their lives for them!) (though sometimes that is all too true, alas.)

With siblings it is different, as your brother is having his own life sapped from him by his horrible illness, and I can quite understand how you would want to help as much as you can. But Bowling Bun is right - you cannot and should not be the only person to look after him, because, as I have argued, you, too, have a right to a decent life of your own. Compassionate as I'm sure you feel towards your brother, it is neither your fault, nor your responsibility, to be his sole carer. There must be others to share that care, or your life (and even your health!) will be sacrificed for him.
So true Jenny. Shirley, AS is a difficult progressive illness, but your brother may be burying his head in the sand about his difficult future. He is unlikely to ever voluntarily choose to receive care from someone else unless you put your foot down and start saying "I'm sorry, I just can't do ... any more". It might help you to sit down and write down over the period of a week, everything you do for him, and I mean everything. Not just the big stuff, but all the little jobs too. Then divide up the jobs. What do you struggle with most? The top three need working on, trying to work out if they can be avoided, or someone else can do them. When I was disabled I made a few changes to my own place. Gardening? Do away will all borders and get someone else to mow the lawn. Shopping? Shop online. Ironing? Wear things that don't need ironing. Washing? Get a washer dryer. These are day to day problems. Long term, you need to support your brother to look at his accommodation. He is very likely to need a fully adapted bungalow in the future, ideally with a wet room bathroom. You need to drip feed ideas on a gradual basis, they are likely to be rejected initially. My own mum, with similar problems to your brother, was left with a nursing home as the only option left because for over 20 years she stubbornly refused to let me make her house more disabled friendly, especially fitting a wet room bathroom and emptying the house of "stuff" (she was a hoarder). Looking back, it would have been better for both of us, if 20 years ago I had plucked up the courage to be firm and absolutely insist that she faced the reality of her future needs. Then when I was younger and fitter, I could have helped her make the necessary changes.