Shiny Brand New Carer - Hi

[Bandit2021]

I am a brand new carer - my husband is just home from having a stroke. His mobility is severely impaired, he is left side unaware, and although he is continent when the need strikes I better have a commode handy quickly since he is totally unaware of which function is in operation. (Discovered that the hard way yesterday - thank God for washing machines .....)

A physio popped round just after we got home and tells me we will be getting three visits a week for six weeks. An occupational therapist is coming today, and my GP's Carer Support Worker team are lined up to call me today.

Thankfully I already had access to my husband's bank account and have always run the household finances. We are not entitled to financial help because he has a good occupational pension plus state pension. My boss has been absolutely marvellous - I work part time from home and he has said I can do my hours at any time that works for me but not to worry about work until I feel ready.

I have never been a carer - I am thankful my husband's speech is still intact, although he has visual problems in that he sees things that aren't there - there are houses opposite ours but yesterday I was told there were police and horses in the field opposite. Apprently we also have flies crawling on the floor that keep turning into tiny machines. I'm hoping this goes away with his gradual recovery.

I saw a book recommended on this site - The Selfish Pig's Guide to Caring - and have a copy coming.

I am tired already - the physio wanted me to sleep downstairs in the same room as my husband. I have no campbed. I tried the floor but at 65 it wasn't great. I spent the night in an armchair but kept leaping up and down because my husband has a tendency to roll towards the open side of the bed. In the middle of the night I bought an excellent guard rail which will drop down to let Bob get himself into and out of the bed. He can do this provided I stand with him and steady him when he wobbles. Thank heavens for Amazon and urgent deliveries!

I guess I'm looking for practical caring advice - is there a handbook? More of a how-to do stuff than who to contact about what?

[bowlingbun]

You CANNOT be expected to sleep downstairs. That is ridiculous. You need your sleep too!!
Can you just clarify how your house is arranged? Is he in the lounge, or ?
How old is your husband?
Your husband is entitled to Attendance Allowance, assuming he is over the STATE pension age?
However, if he is under state pension age he is entitled to the much more generous Personal Independence Payment, PIP!
Get those forms in asap.
As he has a "severe mental impairment" now, he is probably EXEMPT from Council Tax.
Easy to claim, just contact your local council.

I don't want to bombard you, feel free to ask questions like "How do I...." and someone is bound to know the answer.
Ask Social Services to do a Needs Assessment for your husband, and a Carers Assessment for you.
This MUST be done before any financial assessment, so find out what they think he needs, and what you need.

[Bandit2021]

We live in a terraced house with three bedrooms and a bathroom upstairs, living room, kitchen and utility downstairs. Bob can't do stairs yet so he has a bed in the sitting room but the guard rail isn't available yet. I'm terrified he'll roll out of bed. My wonderful boss has bought me a folding Zedbed which arrives this afternoon, so I'll have a bed at least. I plan on putting it against his bed so that if he does roll out, at least he'll have a soft'ish landing (I'm a fairly cuddly person). I have bought a guard rail privately which arrives on Wednesday so hopefully after that's up I could possibly go upstairs but hush, don't tell the physio!

Bob gets a very generous private pension and the state pension (he is 72), and I have a reasonable wage given I do four hours a day (from home). I don't want to stop work - I love my job and it kept me sane all through lockdown when I was shielding and didn't leave the house at all.

I'm hoping the mental impairment will go over the next few months - will the Council be OK with that?

There's an occupational therapist coming this afternoon and after that I'll look up phone numbers so that I can make as many phone calls as possible tomorrow morning.

Is AA means tested? If so, I doubt we'd get it. I think Social Services has to be the first port of call, doesn't it?

[bowlingbun]

AA is NOT a means tested benefit.
I'm dismayed that you are buying equipment that the hospital should have provided and fitted before he returned home.
Did anyone visit your home before he was discharged?

[JuicyCorriander]

Hi Bandit,

First things - wow, what a sudden and life changing event, that is happening to you too. You've got a lovely "chipper" attitude about you so do let anyone think that is a reason to load things onto you, not giving you full support because you can "cope".

bowlingbun is right, someone should've been out to assess your husband's living needs before discharge, was he in and out of hos pretty quickly?
Those pull out beds are brilliant, not a long term solution but maybe it won't be long before you can sleep in your own room, and not long after that, your hub will make it up the stairs too.

[Bandit2021]

No-one visited our home until the physio came yesterday, a couple of hours after Bob came home.

I don't mind buying some kit. We've had a perching stool delivered by the physio and a chap is going to come and raise Bob's armchair, but aside from that in some ways I'd rather buy it because then at least I get to choose something that doesn't turn my sitting room into a hospital ward (too visibly). After all, this is where we live (and I work).

I'm partway through the awful form that is the AA application - it's appalling!

Another physio just called and has left me a book of exercises and tells me that tomorrow's physio will run through them with Bob and I. Today she wanted to check his mobility and how well he gets into and out of bed - doing those things tired him, so there's no point doing any other exercises as he won't get the benefit.

I've got him stroking and fussing one of the dogs with his "baddie" hand at the moment. At least the dog is loving it! And it doesn't feel like work for Bob. Tomorrow he's going to be playing an imaginary bass guitar (he used to play pro bass)

I really appreciate your help bowlingbun and JuicyCorriander - thanks. And yes, he will go up and down the stairs again. He can do three already I'm told. Huge progress.

[JuicyCorriander]

That is really positive!! And I totally get the visual aspect of the furniture.
I'm curious about the guitar tho, anyone I'd have heard play?

[Bandit2021]

He was a session player mostly, but did play sessions for some famous names. Eventually though he and his then wife had a young family and they needed stability so Bob became a technical engineer for the Beeb working on the masts etc. He did that until he retired, and was very happy. But he never stopped playing bass! That's going to be very useful. He wouldn't be able to support the bass at the moment - they can be a unwieldy - but the day will come and he needs manual dexterity back. He's determined and that will make a huge difference. We both know it's "Use it or lose it".

I need to arrange an occasional minder though - my sister lives up the road and has fairly advanced COPD. She can't walk as far as our house, and she certainly can't walk up the road so I must find some way to get to her home. I have a wonderful daughter in law, and I'm hoping that provided Bob has used the commode before she arrives and doesn't need "personal" attention while she's there, she'll agree to come and play with the dogs once a week or fortnight. My sister is the best hugger in all the world.....

[Jane Carers UK]

Hello Bandit2021 and welcome to the forum

It's good to hear your husband is making progress with his recovery and getting some physical therapy but It's important you get support too as his carer. Have a look through our Help and Advice pages and make sure you're getting everything you're both entitled to. There are also tips and suggestions for taking care of yourself:

https://www.carersuk.org/help-and-advice

If you'd like to meet up with other carers online we run weekly meet ups which you'd be very welcome to join:

https://www.carersuk.org/help-and-advic ... ne-meetups

There are also online Share and Learn sessions covering a range of topics and activities:

https://www.carersuk.org/help-and-advic ... e-sessions

Do join us if you'd like to, there's no pressure to share anything you don't want to, it's all quite informal.

Best wishes

Jane

[Jennifer_2005]

this world of being a carer takes some getting ones head round!
Attendance Allowance is not means-tested, and you could get help with filling in the form. It's important that you stress the very worst that happens or needs to be done, and as he has caring needs at night, you may be eligible for the higher rate .
Age UK is very helpful and may be able to point you toward someone who can help.
Occupational Health can provide the correct aids for him and they will pay for a lot of things.
I understand that finance is not a problem but the extra money can be put to things like getting a carer in to help you even just a few hours.
Lack of proper sleep can be a real problem for you as you have a lot to cope with
Hope you get the support you need and your husband improves
Jennifer