Hi guys, I feel like an inbetweener. I’m 51 years old and my son with severe cerebral palsy is 33. He lives at home with me and has about 14 hours companion care a week. I feel stuck as my son enjoys alot of children’s programmes but also loves marvel an DC movies. I need a bit of help and advice for both of us. I want a life again as me, not mum, carer, nanny or putting anyone else first. I’ll never put my son in residential care as he’s non verbal and there are too many horror stories. He’s my son, my love, my life but he deserves better and so do I. Any respectful responses are appreciated xx
After 16 years without a child free day my health was ruined forever, he went from home, to boarding school, college, and then a wonderful care home, until it changed hands and went down hill very quickly. He now lives in a privately rented flat with carer support. One day, you will no longer be able to care for your son. Either you pretend you will live forever and your son then gets placed anywhere they can find, or you start the long process of transition. Does he ever do anything with others outside your home, like a day service? I have been able to support my son and his staff to make his flat a real home from home. During the transition he came home alternate weekends, not a problem as he was used to going away in a caravan to a steam rally every summer weekend. Your LA should be helping transition, the support they are giving you needs to be increased gradually.
Hi @Nixidoodle and welcome!
My wife and I have a 41 year old autistic son. He’s become gradually more verbal over the years, but becomes non-verbal when stressed.
We took the decision when he was very young that we would aim to find the right provision for him once he became an adult. A care home would have been disastrous for him. He’s now in a supported living environment where the aim is to maintain and develop his current level of independence. He was 25 when he moved in. Four years later, my wife (Gill) sustained a partial spinal cord injury, leaving her with limited walking ability and constant pain. She was in hospital for three months, and had Mike been at home with us at that time, I would have gone under.
I won’t lie and say it’s all plain sailing, but we spend a lot less time caring than we did, and most of our role now is in helping his staff to understand him better and to structure his day to get the most out of it for everyone. He’s far happier than he was at home with us, but we still have regular contact and we take him on holiday at least once a year.
It’s worth finding out what options there are in your area before settling on a specific “solution.” Check your council website to begin with.
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Caring for an adult son at home but the system still treats you both like an afterthought. The 14 hours sounds like the ceiling of what you’ve been offered, not what he actually needs, so the first thing I’d push for is a fresh Care Needs Assessment for him through adult social care. If the package grows, taking it as a personal budget via Direct Payments lets you hire the companion care yourself and build real respite into it. Then a Carer’s Assessment in your own name, separate from his — that’s the one actually meant to fund your breaks and the bits of “you” you’re trying to get back. Has he ever been screened for NHS Continuing Healthcare given how complex his needs are? And is it genuinely just the 14 hours right now, or is there any other respite?
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Yes, it genuinely is just the 14 hours. I have telephone support from my eldest son but that’s about it. Thankyou for what you wrote, I appreciate it. We have a review due within the next 2 weeks so I’ll mention some of the things you’ve said. Thanks again x
I’m currently looking to move to a different county (for family support) and there seems to be alot more thought about caring for carers there so fingers crossed, we’ll move home and my son will be able to access suitable facilities for him to enjoy and a break for me.
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Have a look at the councils website and see what it says about a Carers Charter.
Then work down it and work ut what isn’t being provided.
Write it out and give it to the assessor.
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Cain I just say that I’m more than happy and capable of looking after my boy as I’m only 18 yrs older than him and honestly, we have the best relationship ever…Best friends, mum n son. The joy I’ve had from both of of my children is an absolute blessing. My eldest is 35 yrs old and will always make sure his brother is properly cared for. Please don’t judge me for moaning but wanting to keep him at home…he’s coherently non verbal to myself and hos companion carers do their homework and pick it up he’s hilarious while acting out his favourite things on tv and his ladies love him.
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The more help you have the better it is for both of you, long term.
None of us know what the future holds. At 50 my husband and I thought we were fit and well. Most evenings we went for 2 mile walks in the New Forest. At 52 I was diagnosed with kidney cancer. Major surgery and a long recovery followed. 18 months later my husband died suddenly in his sleep from a heart attack. 3 months later I was involved in a head on smash that nearly killed me, unable to walk properly until I had replacements 5 years later. As my son had left home (but came home regularly) his life was relatively unaffected. He goes to Minstead Training Centre 4 days a week and has friends who have also lost parents, or are elderly or disabled.