what would you do if you were us?

Share your ideas about the practical side of caring.
I am just wanting to ask a few peoples opinion on here regarding a decision our son wants to make. I believe I have mentioned before that my son's condition is DMD and is fatal and also mentioned that he is an Honours graduate from University?

Well, Rob has been trying really hard for the last two years to find a job and no one will give him a chance even though he has the qualifications for the jobs. (In fact two of his able bodied friends whose degrees are not as good as Robs got 2 of the jobs he went for interviews and was turned down for).

In Rob's final year he worked so hard he almost made himself ill. He is now thinking of returning to University to do his Masters. His dad and I are opposed to this on the grounds that finishing his Honours year nearly killed him and his condition has worsened in the last two years.

Surely if your lifespan was limited you wouldn't want to spend your remaining time on this earth working your guts out studying for a degree when you won't get a job out of it anyway? He has a full life at the moment and he would not have time for any of the things he currently enjoys in a life filled with studying.

Are we being unfair in trying to discourage him?

Very difficult Eun but if this is something which matters to your son and which he feels that he wants to achieve in the time which is left to him, despite my misgivings, I would try to support him in it. Perhaps he feels that in the absence of a job that he still wants to engage in education or employment, it is the sort of thing which a young man of his age would be doing, have you discussed with him why he wants to do this? Sometimes when we feel powerless to control the way in which our life is going we need to take control in our own way, find a way of working towards perhaps an unattainable goal or to manage a situation which we would not choose to be in and we cannot change so that we feel that we are still, to some degree, the masters of our own destiny and maybe this is what your son is doing, the alternative is to feel defeated.
It is hard to watch somebody you love do something which you're certain will harm them, even when they're sure the pleasure will outweigh the pain.

I can sympathise with your son wanting to do something with his life - and it's a bleeding shame that employers haven't given him a chance. At the end of the day, he's over the age of majority (presumably of sound mind) and it's his life, not yours.

Would it be possible for him to do a Masters in his chosen subject with the OU? Okay, it'd take longer (and you need broadband, at least using a mobile dongle), but it'd give his brain something to do, and he'd get plenty of interraction with other students (over the net) so that he's not stuck at home inwardly seething with frustration and boredom. He might be able to get some financial help from the Crowther Fund.

FWIW, because of his condition, my husband has absolutely no chance of ever working again (not even by phone or computer), but he completed an OU degree in sociology and politics a few years ago (it took 6 years, and he had to wait several years first to be well enough to study). He enjoyed it so much that he's started doing a Masters. You can do it part time or full time, but he chose part time.
We actually have an appointment for this Wednesday afternoon with Glasgow Caledonia University to see what level of support they would offer if he decides to do this. He is thinking of doing it part time - over 3 years instead of over 18 months.

The downside I can see is the travelling involved (he was at uni in Paisley before which is 10 mins up the road from us) to the other side of Glasgow - which means Kingston Bridge and rush hour traffic; even though he is going to do it part time it still doesn't make it a doddle (my degree was part time and I was still working my socks off); and the final thing is if he cannot complete the Masters and has to drop out for health reasons will he have to pay back fees and the cost of the helper?

Parsifal he says he wants to do this because it is something he would enjoy doing - its an MA in Digital Animation - his degree is in Computer Games Technology but the Masters is in what the movies and television use for special effects etc. I do want him to be happy but I want him to be well also. The danger is if we stand in his way on this he will get depressed and give up on life and we certainly don't want that.

Catja he could have done a course at home through the Muscular Dystrophy Campaign Neuromuscular Centre in Cheshire but that is only for those who are English /Welsh. I strongly object to this - our donations go from Scotland to England towards this yet our kids can't take advantage of it but that's a whole other story. I think he doesn't want to do OU because he wants to mix with other people and not just his boring parents ie us.

I suppose we will know more after Wednesday. Thanks for your help and advice.

Hi Eun - just adding my twopence worth Image Image

For whatever reason I think that you have to let Rob do this - as you've told us before he has had a horrible year with friends dying etc. I suspect that he feels that he must do this now whilst he still can and as hard as it will be for you I think you must respect his decision.

Hopefully the uni can come up with a scheme which will help to put your mind at rest.


I also think you have to let him do what he wants. If he really wants to do it and doesn't do it now, then he never will and young men his age need to be doing what their peers are doing and feel part of the world.
My heart goes out to you.
Hi Eun - just adding my twopence worth Image Image

For whatever reason I think that you have to let Rob do this - as you've told us before he has had a horrible year with friends dying etc. I suspect that he feels that he must do this now whilst he still can and as hard as it will be for you I think you must respect his decision.

Hopefully the uni can come up with a scheme which will help to put your mind at rest.


Hi Eun
I know its difficult for you, but I agree with Susieq in what she has said.

Special hugs to you and good luck on Wednesday,
Blue Image xx
Eun, you and your husband and son love each other so much, and you have done everything it is within your power to do to support him in everything. You must be so proud of him with what he has achieved, and at the same time, scared out of your wits that if he works too hard, perhaps he would be ill and the worst happen. Whatever you decide will be the right thing for you all, and you are used to tough decisions.

It looks as though it would be a lot of extra work for you, with the driving. Would it be possible to get direct payments for your son to have a driver to get you/your husband and your son back and for, to at least save on that stress.

I hvae no idea about the finances of it all, but i wish you best of luck with finding out. The three of you have to live with constant worry, but you have both done a wonderful job over the years as carers, your son has proved that, as he has achieved so much, because of the work you have put in, and the support you have given him.

Good luck, I will be thinking of you on Wednesday. x
I will be thinking about you all on Wednesday.

Truly hope that with support your son will manage to continue his further education. He is a remarkable young man, and no an enormous credit to you.

Take care
Oh Eun, you have to let your son do what he wants. The last thing you and your hubby want is for him to turn round to you both at some awful later date and accuse you of stopping him doing what he wanted. My best friend's youngest son is on his second year of remission from leukaemia, he's 20 and has to stay on the hospital books for another three years before given the all clear. He is being very stupid about everything at the moment, has crashed his car three times in the last month, is being rude and selfish towards his mum and dad who've supported him through all his treatment and sickness three years ago and is generally being a pain to live with. BUT my friend says that she cannot stop him doing stupid things as he's a man now and has to live with the consequences of his actions HOWEVER hard it hurts her to see him. He is experiencing some kind of reaction, a post illness stress, which is making him act so appallingly towards the very people who nursed him. He was so ill, he nearly died, but his body was so intent on coping with the leukaemia that it didn't experience any actual trauma. It's just years later, now that he's on the mend that it's reacting. She can't stop him doing things, eating the wrong foods, going out in the rain and the cold weather (he's not supposed to do that). But she doesn't want him to end up resenting her and her hubby for stopping him 'living his life' (after so very nearly losing it). What can you do? Let your son have his life, Eun and let him enjoy himself.