Worried for the future

I have 2 autistic sons, one aged 19 and one aged 16. I have been there primary carer for both of them all of their lives. Both can not go out alone and rely heavily on me to take one to work and both socialising. Last week I was diagnosed with osteoarthritis and fibromyalgia. I now really struggle to do all that I used to do. I’m only 43 and I feel that I may not be able to look after them properly if the ailments I have continues to worsen. My partner is great and very supportive even though he isn’t the biological father to my children. He doesn’t drive and now I’m having to think about him going for driving lessons to ease the pressure on me but I feel guilty because he’s already doing so much. I haven’t applied for any disability benefits because obviously it’s a new diagnosis and I am coming to terms with fact there are no cures just ways to lesson my pain. Also I am unsure if I will be entitled to PIP. It makes me so afraid for the future and worry that if too much is put on my partner he might decide he’s better off finding someone who is less hassle. I just don’t know what to do anymore

Hi Susan.

Given the hour , I’ll just recommend an online benefits calculator to get you started on the finances side :


A financial m.o.t. … all current benefits being claimed ?

Housing / Council tax … discount / disregards kick in in respect of the latter ?


Seems appropriate … a link to a guide on that Beast :

Personal Independence Payment (PIP): What PIP is for - GOV.UK

That’s the immediate basis on the financial side.

Others will be along to tackle the caring aspect … not much we haven’t come across before … some with first hand experience.

I trust you’ll find their comments of major use to you in your own unique circumstances ?

Hi Susan,

My son was brain damaged at birth, can’t read, write, or do any maths. I had health problems and when he was 16, my GP told Social Services that I could NOT care for him full time any more. Fortunately, his school was a mixed day/boarding school. From there, he went to a Farm College (Fairfield Opportunity Farm) and then to a residential care home. Now he lives in a flat, with support.

It is now vital that you start to look for somewhere your sons can live, close enough to you to keep in touch, but with someone else providing all the day to day care they need, while you are still well enough to help them settle in and work with the care provider. My son comes home every second or third weekend, plus holidays. Presumably they already have contact with Social Services?

In some ways, it may be easier to set up supported living for them because there are two people who know each other, with special needs,

Thank you for the replies, I definitely need a financial mot. Thank you for the links, it will save me a lot of time.

I don’t want to put them in supported living, as long as my partner is still around that’s not even a consideration. It’s a long term relationship so it feels stable at the moment. I know things can change in a heartbeat. I think I need to talk to my partner about my fears but don’t want to sound dramatic or needy. He is a really good man and he does so much for us. It is just a scary conversation to start.

Agreed, I cried buckets when M had to go to boarding school.

However, just bear in mind my comment about being able to see them settled while you are still well, and it can take YEARS to arrange good supported living, especially when it will be “tailor made”.

One day you won’t be around to keep an eye on them, and some form of care away from home will be inevitable, so be sure to plan for this. Make sure they have friends away from you, especially after they leave school, that they keep going to clubs, or day services.

Your welcome , Susan.

Anything weird revealed , just yell.

Over 40 years ago, I met a couple with a Down’s Syndrome daughter who was very much loved. They were always concerned about what would happen to her when they died. Social Services were vague, they would arrange “something”. A few years ago, I read of a woman with Down’s Syndrome running up and crying, “I can’t wake mummy up”. It was the couple I’d met. That poor girl was going to have her entire life turned upside down while grieving.

This always stuck in my mind, especially when subsequently my second child was brain damaged at birth.

Through carers groups, I have met many very elderly parents still caring for their son or daughter, some in their eighties, disabled themselves. In my area it seems that if your children don’t go away to college or residential care as they leave school, they will be with you until you die.

As a result, I am now starting to campaign for parents to have the “right to retire from caring”. That is not to say abandoning their children, not at all, but for them to live near enough to see each other regularly, but for someone else to take over more caring.

you are so so right Bowlingbun .

we did this when our daughter was 42. as you say it took years to organise and to get the right flat share person with her.

she is now nearly 53, we visit most days for a cuppa with her, but we do not have to and no pressure is put on us to do so. her health (and ours) have deteriated now, and we would not have been able to set it all up now. she is so well looked after, and I truly believe she would not be alive now (she had a brain haemorrhage two years ago ). she has already exceeded the drs. prognosis for her future.
if she had been still living with us when this happened, there would be no way we could have continued caring for her because of our age, so she would probably have ended up in a nursing home.
all I can say, is don’t leave it too long before you arrange something for your sons independence.

Down’s Syndrome … assisted living ?

Down’s Syndrome Association on this very important option :

Housing & Support For Adults - Downs Syndrome Association

I trust said link will prove to be of some use ???