My name is Denise and I am fairly new to caring. My Husband has an Hypoxic brain injury and his short term memory is extremely poor.
After being in hospital for three and a half months he is now home and I am loving him being at home but totally exhausted with dealing with his inability to remember.
It affects every area of our life.
It is not all bad but hard as it it not safe for him to be left alone. We are joined at the hip so to speak.
Hello Denise and welcome
Are you dealing with this all on your own? Was he not discharged with a Care Plan in place?
Have you discovered Headway?
Very good info on support
Off to bed now…night
No he was discharged fairy quickly.
Mobility is not too much of an issue thankfully. So nothing to sort out with that.
He was supposed to be getting more occupational therapy at home to help with orientation but not heard anything yet.
I have phoned the carers hub and a lady came to see me and she told me to ring social services for an assessment which I have done and now waiting to hear off them.
Yes I have been in contact with Headway and they have given me a lot of support. especially in the early days when my emotions were all over the place.
Denise hi - are you entitled to anyone coming in to be with your husband to give you ‘time off’ at all? It may depend on your financial situation as a couple however.
Disgraceful that he was packed off home as he was out of hospital! Hospitals know perfectly well there MUST be a care plan in place before a discharge, or it is an UNSAFE DISCHARGE which they are NOT allowed to do. They count on patients and their families not knowing this, and basically just ‘chucking them out’ to get the bed back.
Other forum members here are well versed in the shenaningans that both the NHS and the SS get up to to delay doing what they should - and how to MAKE them provide what they should! - and I’m sure they will be here in the morning to give you good advice on what to do next.
Fundamentally, in these cash-strapped times, the person who ‘shouts loudest’ gets seen to first. So, alas, be prepared to yell!
Hi Denise, welcome to the forum.
My son, M, was brain damaged at birth, he’s now 39, fortunately fit and well, some areas he’s totally normal, but the crucial parts, reading, writing, and arithmetic are impossible. My husband said it was like a “black hole”, however hard we tried, he just couldn’t do it, and ultimately, we had to accept it.
Just a few questions to start with, as I have to be at M’s flat 15 miles away at 8.30, to meet a representative from Argenti, a company that does electronic gadgets which may (or may not) be able to help. I’ll report back to the forum.
How old is your husband?
What caused the hypoxia?
What sort of work did he do?
Have Social Services done a Needs Assessment?
Have they done a Carers Assessment for you?
Did you know that he is now exempt from Council Tax on the grounds of “severe mental impairment”?
Does he ever go out without you?
Are you claiming any disability benefits for him now?
Do you have Power of Attorney?
My husband was at risk of seizures and had a speech loss and reduced cognition (as a result of an aggressive brain tumour) so he could only be left for 10 minutes at a time.
Our Council produced a booklet for carers (also available online) which listed all the support available, both free and charged for. It included a sitting service to give carers some time off. As it happens, I discovered it too late to be any use to me, but it is worth your asking now if your council does the same. As someone said earlier, you need to shout and keep asking.
I found the hardest thing was getting time to look after myself. Carers are the worst people at doing that and we are the ones who need it most. So I’d say, start now. When you have your assessment think about the worst case - tell them what the hardest things are for you to do, tell them everything your husband needs help with. Start making notes now! Ask how you will get to your own medical appointments - even to the dentist. Are they doing a needs assessment for your husband and a carer’s assessment for you? Will you be able to talk to them privately if your husband will be distressed by hearing what you say?
Whatever you need to say or ask, there is probably someone on here who has been there already.
Thanks for your replys.
I am waiting for this assessment now and applied for the pip but trying to explain how it affects my husband’s daily life is so hard even following the guide on citizens advice website.
Yes my husband has accompanied me to Dentist. Dr and eye appointments but I have quickly explained the situation ad it has worked.
God knows how we would have got on if he was house bound.
So many more things I want to write but find it a bit much in one go.
Good luck to us all cus we bloody well need it.
It will take a long time to adjust to your new situation. Please don’t be too hard on yourself.
If, understandably, you are finding it difficult to fill in the forms, then it might help if you kept a brief diary about what you have done for your OH that you wouldn’t have done previously.
Sometimes it also helps to write down everything about your new situation that annoys you, or you struggle with most of all. Then put it in priority order and share the top two or three things with us. Others have probably faced the same problem before, and can share how they dealt with it themselves.
Well my latest battle is getting my husband to make notes to prevent my having to answer the same question time after time.
Have also discovered that if I say to him can you really not remember that he has a think and sometimes can remember.
Anyway christmas is on us and the tree is up and too many mince pies being eaten.
We were invited out by family but for various reasons decided to stay home christmas day with a family day on Sunday.
I have invited an elderly neighbor who will be alone christmas day to lunch.
A kind friend has donated us a turkey that will feed 14 hope it will fit in the oven.
Anyway hope you all can make something of the day x