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How do you cope...? - Carers UK Forum

How do you cope...?

Share information, support and advice on all aspects of caring.
...... one of your children has been diagnosed with probable MS? We just found this out last week and this is tearing my heart out. My son (34 yrs old) has Asperger's & learning difficulties and now we have this devastating news to cope with.

I feel so...so...angry, I suppose, and so sorry for him and so protective and so sad. What will happen when we're no longer around? How is he going to manage?

He has been staying with me since we found out but has gone back home today as we all realise that we have got to try and carry on as normal and not let this take over all our lives - but how can it not?

I feel like putting my head under the bedclothes and never coming out. Cry? Well, I thought I'd shed a few in my 60 odd years but this is something else. I feel absolutely bereft and I'm having trouble giving my elderly Dad his normal level of care. Nothing else seems important any more.

If any parent out there would care to share how they've coped at a time like this I'd be grateful. I'm a complete wreck right now - knowing I have to stay strong for my son. But I can't.
Lb xx

How you cope is the way we always cope when there is devastating news. We rage, whether it is expressed externally or not is immaterial, we wonder what kind of twisted rotten luck or fate is out there and if we believe in a deity, this is probably the time we curse it to the back of beyond.
More than anything, we ask what the hell did we do to deserve this?

Your son will figure out his own way of dealing with how his condition will affect his life, even with his ld. Our youngsters are resilient and somehow, they find a way.

You are coping sweetheart. You are doing what anybody does in circumstances like this, you are fearful, angry, upset and scared..which is your way of coping at the moment. As time passes, you will judge each day by how it presents itself and act accordingly. You will be there for your son to love and support him but not smother him.

You may not think you are being strong but right now, you don't have to be. When it's needed you will be. Try not to think of years ahead and how he will manage, I'm sure there will be support in place to enable him to cope with daily life, the worst thing is to try and think ahead..because you just don't know for sure how it will be.

You'll be ok and you'll be there when he needs you. We'll be here when you need us.

((((((((((((((((((hugs)))))))))))))))) and more (((((((((((((((hugs))))))))))))))))))))

Wish I had words of wisdom to ease your pair and worry - but I don't. All I can do is to hold your hand here in cyber space and tell you that you will cope, because you have to.

But I will add this - you say probable MS; try not to cross bridges till you come to them; perhaps the final diagnosis won't be as bad as you fear; perhaps it's something to do with the accident he had recently ?

And, though it's not easy, try to carry on as normal but be gentle with yourself.
Hi - my adult son has autism. That in itself can break your heart time and time again under certain circumstances. We as parents always worry about who will watch over them when we're gone. That thought can fill us with dread. On the practical side : what kind of accommodation does your son live in at present : independent living, supported living? If he is diagnosed with MS, then it can vary enormously in its progress so you need to know how it will develop over time. Depending on that you need to get social care/nhs care when/if necessary in place so he is helped and protected in the long term. Yes, I know I sound practical but it's deliberate because these things may help, a bit, to ease your mind. How would I feel if I was in your position? Probably the same as you do right now. We love and care for our children for our whole lives and it takes its toll, emotionally and physically, year after year, but we keep on going on. We can get beyond despair at the unfairness of it all + what life throws at us + our loved ones. Take comfort from those who love you and advice and practical support from those, professional or otherwise who can help you + your son. I sincerely feel for you + wish all of you well.
This brings back memories of when my son was diagnosed with Duchenne Muscular Dystrophy at the age of six. I remember the devastation and the feelings of why should some people live until they are 90 and our son will not live to see 18?

My son will be 29 this year and is a fighter. Yes he uses a powered wheelchair to get around and a ventilator to breathe but he is still here. You do as a parent eventually adjust to the change in circumstances - you have to be strong for your child. You either cope and get on with it or you give up. If you give up who will help your son?

Good luck

we just do.. usually on our own...
Thanks everyone.

This I think, is the toughest call for me ever. I'm simply heartbroken and I seem to be surrounded by people with perfect lifestyles and perfect children and perfect homes. I know that's more than likely not the case but it seems like that to me right now.

And yes, I am saying that life is so damned unfair. My son has never had the greatest quality of life and has had to face a lot of challenges and now he gets this thrust upon him. I know lots of you our in virtual carer's land have had to deal with this sort of stuff - and worse, of course - and this is why this is the only place I feel I can vent my anger and sadness.

To answer a previous post - my son lives independently with the help of a Support Worker. He only sees the Support Worker once a week at the most - and this is because my son always finds something better to do on the days he should be meeting with him and cancels. This in itself has been worrying as he can be ok for a few days but he doesn't realise he needs this support and our whole lives seem to lurch from one disaster to another because he really can't cope well over a prolonged period of time without some "control" or support, but he can't grasp that he needs it. So at least once a month there's phone calls (usually late at night when you can't do that much) saying he hasn't got any money to put electric on his key card and the fridge/freezer has gone off - I can't tell you the number of times I've had to do him an online food delivery as he's had to chuck everything out.

Ah dear, sorry, I'm rambling - but you're the only people I've got to ramble to.

Thanks again for replying - honestly, just seeing that someone has read what I've typed here is a comfort at the moment.
I do not know if you have to ‘cope’…I think that you have to move towards doing what is best for both you and your son. It is unfair sometimes that everyone else seems to have so little to worry about and people like yourself are stuck with this heavy challenge to deal with. I hope for nothing for but the best for you and I hope that you can come to bit of peace ….