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Please tell me I'm not alone - Carers UK Forum

Please tell me I'm not alone

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Hi everyone
I have been a carer for my husband for 16 years now, firstly with his mental health, depression and anxiety then severe OCD, to now both mental and physical, Chiari malformation and syringomylia. At the moment I feel so alone, his care needs have shot up, he is in constant pain, which he has been told is functional. All day everyday he has to show and tell me everywhere he's sore, mainly stomach at the moment. He doesn't listen to me and gets me to phone the docs everyday (receptionists know my voice), they can never do anything...his psychiatrist has suggested that his OCD has switched from his cleanliness to his physical issues. I can't go out during the day for a couple of reasons, he falls quite a lot and he keeps delaying about phoning docs so I can't go shopping etc till nearer tea time.
On top of that our 18 year old son has autism which was only diagnosed when he was 15, he is smart but a lot of the time acts childlike, he can't do social things etc but because they (camhs) said he was 'borderline' we don't get any help. He is not ready to work mentally but doesn't claim benefits either 😩.
Our 15 year olds daughter is struggling hugely with her mental health, she says she doesn't feel anything anymore, self harms and nearly everyday thinks about suicide. We are trying to get her help but camhs are dragging their feet.
Please tell me there is someone else who is going through similar and how they cope.
I am so sorry for the long rant, there is so much more I could say eg finances etc but you would be reading a book, thank you for getting this far x
Hello Elizabeth.......your not wonder women(you will get help and support in here(best advice I can give you,but your own happiness first(sounds selfish I know) how would others cope if you couldn’t?.if this helps,I’ve always put others needs over my own(people please) be strong ian
I am going through similar issues and i am dealing with adult mental health services who aren't being at all helpful.
Looking after your husband and and your son and your daughter all of whom have issues is just impossible to cope with, you are not wonderwoman, you are not.

Is your doctor helpful, talk to them about how much is affecting you on a day by day basis.
Have you talked to social services, an unpaid carers assessments, there are charitys/groups that can help with autism.

Are you claiming the right benefits, is your husband getting sick pay, if his care needs have increased he might be able to get PIP, personal independence payment, extra money to help with illness and disability.
Sorry i am not an expert on benefits but your son might be allowed ESA Employment support allowance.
Try contacting Citizens Advice, your family might be losing out on thousands of pounds a year benefits.

Your daughter clearly needs a lot of help but yes mental health services/camhs often aren't very helpful, there are young person crisis lines, she can phone up, talk to in confidence about her emotional issues.
Childline can help:-

https://www.childline.org.uk/

Try The hospital PALS, Patient liason service, all hospitals, mental health trusts have to have a PALS to give information advice and support, say your daughter thinking about suicide, what help is available. She needs a mental health assessment and therapy supplied ASAP.
Same with your son , you need the right help and support looking after your son.

"Borderline Autism can be termed as Asperger’s Syndrome or High-functioning Autism. It is one of the most complex developmental disorders to be diagnosed by any specialist. In borderline autism, the child will be displaying many of the symptoms of ASD but not in that severity to be diagnosed fully."

Sometimes schools can help with young peoples issues, they may have a councellor who your daughter can see, privately and confidentially.
Its a lot of work phoning contacting but hopefully you will get some support.