Well I don’t know what to say here. I am a fulltime 24/7 carer for my partner. 5 years ago I took him into hospital thinking that he was having a stroke but it turns out that he had undiagnosed HIV. The HIV attacked his brain and central nervous system. He was diagnosed with HIV Encephalopathy. The infection in his brain left him with frontal lobe brain damage and early onset dementia, as well as depression, neuropathy and incontinence.
I luckily am still negative and I had to quit my career to become his full time carer.
Its Hard.
I dont regret looking after him but its the loneliest thing I have ever done.
I have to be carefull telling doctors and social workers what he has done cause they want to take him off me and put him in full time secure supported living. He is only 37. That isn’t happening.
Our relationship has changed as I feel more like his dad than a partner.
Financially we are virtually bankrupt.
Socially we are isolated, by his immediate family and neighbours as they don’t understand his disability.
Right now I am living day to day just trying to get through it.
Sorry, didn’t mean to write all this. Im just here to see if I can educate myself a little better and maybe see outside the box a little.
Hi Andrew,
Welcome to the forum.
Often, joining us and telling it how it is helps a carer to get the help he or she needs, so no need to apologise at all.
Can I just run through a few basic questions first.
Is he claiming Disability Living Allowance or PIP - Personal Independence Payment - at the highest rate?
Are yo claiming Attendance Allowance?
Are you aware that since diagnosis he is EXEMPT from Council Tax due to Severe Mental Impairment? This can be BACKDATED to the day of diagnosis!
Have you asked Social Services to do a recent Needs Assessment for him and a Carers Assessment for you?
Are you getting any help at all?
Do you have Power of Attorney?
Has he ever been admitted to a mental hospital on a Section 117?
Has anyone ever mentioned NHS Continuing Healthcare to you? One of our other members, Chris, will give you some links later, I’m sure.
Of all these questions, the answer to the last two are the most important of all.
Reading ! … CHC / NHS Continuing Healthcare … main thread :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
Not the easiest of subjects … thank the creators for that … colour coded in an attempt to make it easier to access the bits
relevant for each reader.
PIP / AA / Needs and carers assessments / power of attorneys / section 117 … I’ll post links if needed … just … yell ?
Hi Andrew and welcome.
Sometimes it is good to get your feelings out there to people who understand. I have cared fo 2 elderly parents and have small children. So my situation a bit different, but there are others her who care for partners.
Do you have any help in? It really sounds like you need it. I understand your worries about your partner being taken away from you, but in all honesty social services are so over stretched that they are usually really happy to not have to provide 24/7 care. If you dont want him to go into a care home social services should be able to supply some care so you can get a well deserved break and socialise yourself so you don’t feel so isolated. Even if it is just to get out and have a coffee, meet a friend. We all need a break sometimes.
Are there any HIV support groups in your area? Might be a place to start meeting some friends who understand?
I think your post is very brave - often the first post is the hardest.
I agree with Sally - can you search for a HIV support group locally? Even an online one may be an option? You do need to find people in a similar situation who can relate to what you are going through. My best friends now are carers or former carers.
I also agree you need more support. You are very young and this could go on for years.