Losing my son after years of caregiving.

It will be three years since my son died age 27. It is an odd feeling…some days are good and some days are okay. I looked after him after he was diagnosed with ALD at the age of six in 1999. He died peacefully and great honour in March 2021. What a rock star he was! Beautiful, kind, loving and always accepting of love and his condition. I miss him everyday and just wish that it would get a little bit better as the days go by.

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Hello @Christian64,

I’m part of the Online Community team and I can see that you are new to the community - I’d like to thank you for bravely starting this thread and sharing how you are feeling. I’m so sorry to hear about your son. Most community members have sadly experienced the death of a loved one and so will understand some of what you are going through.

I’m sure someone will be along to offer their support, but I wanted to share a few Sue Ryder resources with you that might be helpful.

You might also want to look at The Compassionate Friends - supports families who have lost a child of any age. You can call them on 0345 123 2304.

I really hope you find the community helpful and a good source of support and I also hope you feel you can access more support should you need it.

Thank you again for sharing – please keep reaching out and know that you are not alone.

Take care,


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Hello Alex

Three years is no time when you held him for 27 . Losing a child is the most devastating loss . I lost my son he was 37 suddenly and the pain is immense. A life with them in it is so different to the one we have now mourning their passing . It’s cruel and certainly not the order things are meant to be in . No parent should ever have to bury their child . This is a lovely site offering a helping hand and a listening ear anytime you feel you need to vent and it’s nice knowing someone’s always around .
I’m trying today to keep the flood gates tightly shut whilst knowing they’re going to leak - my first Mother’s Day without him . I’ll get through it though as my son really disliked emotions his Asperger’s meant he didn’t understand them . Sending hugs x

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Sorry confusion there that was meant for Christian

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My son was born with mild cerebral palsy, moderate learning disability and later epilepsy. We was the most kind ,funny and well liked person . We was living independent with Mencap right up until the end of April last year. He had no symptoms ,until April he had pains in his spine and hips . Physio and walk in clinic said muscular ,on the 25th April he could not get out of bed. Got him to hospital it was secondary bone cancer, they could not find primary. He died on the 17th July, but he was so brave. But the day he died we held his hands,and he said I have got to go now,I said where,he said death. I felt someone had come for him, I hope there is a after live. I just felt he was too good for this world . Love to everyone

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No worries. I’m just getting accustomed to how use this forum.
You are too kind and I am grateful for your time and lovely consideration. I feel in time I’ll open up a bit more. Not easy living away in the USA from the UK. But, I take one day at a time.

Many thanks!

Thank you Alex for sharing your story and the resources that are available. We moved to the USA years ago from England and the resources available are negligible and/or extraordinarily expensive to access. I journal and thankful for a few friends and family in Canada.

@Christian64 It is so difficult losing a child no matter what age and even harder when you have spent a lifetime as a carer for them.
My son was severely disabled with an undiagnosed neurological disorder and passed away after suffering a seizure in 2022 at the age of 41. As a child he was intensively investigated both here and abroad but no diagnosis was found so we decided to just get on with life. He was never able to walk or talk but was a very happy chap and had a very engaging personality. He lost skills over the years and a doctor suggested a new MRI scan as he’d not had one since the 1980’s. Because of covid we did not get to see the neurologist for the results and he passed away in May 2022. There had to be an autopsy as he had never had a seizure before, the coroner then got the result of the MRI scan and we were told that he had Leucodystrophy. I’m really not sure how I feel about not knowing this but I don’t really think it would have made much difference to our lives.
Losing him has left a massive hole in our life and although last year I did start to feel a bit better, I now feel I’m back to square one so I understand how you feel. Like you I wish things would get better but I don’t think they ever will. Take care xx


Like you Reet41,my son was 47 when he died of cancer. He had Right side Hemplegia, moderate learning disability, then at 22 he started having fits again ,after not having them from aged of 7 . After trail and error ,with medication they were under control. He continue to thrive then at the age of 40 ,he started to be independent living with friends with Mencap. The medication gave him freedom, but I do wonder if people that are on long term medication should have regular endoscopy as that is where the cancer could have started from . Fits are very frightening ,as sometimes they give no warning.But at other times my son used to say I have so much energy , and we used to wonder when is the fit going to come sometimes it would be two or three days. He had one in the swimming pool once, he went to sit down in the pool ,I had to shout out to the lifeguard to help me stopping he going under. There was lots funny times when he would phone me up in the morning and say get up sleepy head get out of bed.We loved him so much.

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@Pest l am so sorry to hear of the loss of your son. Our disabled children have so much to put up with in their lives but seem to get through it with little complaint and a smile.
My son had not had a seizure before and was in hospital for a routine procedure when he had one. It took over an hour for them to bring it under control, he was then unconscious for three days before sadly passing away. This is such a hard road to be on for us all. Take care.xx

With kindest thanks. One day at a time…

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This is want I keep saying, the medical staff were so surprise that he did not complain even though it went into the bone marrow ,and he bled internally. I say people with disabilities have a not to put up with they very rarely complain. They need more screening. There is a website, we’re you can report the death of a person with a learning disability or Autism . It is LeDeR , it is because of this reason, it is run by the Government. Even though it is 3 Years since the death of your son,you can still fill in the online form,it takes just a few minutes . May they all rest in peace, I think sometimes they were too good for this sad world.:heart::heart:

I know exactly what you are going through. My learning disabled daughter passed away at the age of 41 from a SUDEP (sudden unexpected death in epilepsy). I have always felt it could have been prevented. I am in touch with SUDEP ACTION, a charity that provide counselling and information about epilepsy. They are brilliant and I have a phone call from one of their bereavement counsellors every three weeks or so. If you haven’t heard of them, they would be able to provide support to you.