Carer fatigue

[Zomac]

Nearly 2 years ago my partner suffered a brain injury after a fall. He is now left with executive functioning problems that, while he appears OK to others, in reality it means he cannot be safely left on his own for more than a day. I am his main and only carer and really need a break! His problems are not so bad he could attend day care, or go into respite care, and his family, who live miles away, don't understand the problems with constant caring and are reluctant to help, like have him for a week so I can rest! Any ideas?

[Hidden]

Could you invent something that would mean you being away for a few days and leave him with the family? I have found the only way for people to see what life is really like is to make them live in my shoes for a while. Like you, I managed on my own until it became too much. I have now realised that it is necessary for others to take over sometimes.

[Zomac in reply to Hidden]

Thanks, that's a good idea. You are so right that they need to see the problems over a period of time. They now only see him once every 6 months or so for a couple of hours, and of course, everything appears OK!! I'l give that a go.

[Lynd in reply to Zomac]

Good luck with that one.

My husband simula to yours and I have not had any offers either.

Problem is all my family are working and Husband has no family.

I have just resigned myself to the fact

We are on our own in that respect.

[steve55]

i can understand that, i have a brain injury and although i look ok on the outside, im unpredictable. if we go out my wife is constantly looking out for possible flash points, for me it could be anything, fat people, racist comments, sexual comments or just general rudeness among other other problems.

[Tia-01 in reply to steve55]

You sound like my husband he has same issues which lost him his job of nearly 30 years....I am the same with my husband as your wife is with you when out and about I can tell when he can potentially say something to offend and divert his attention but sometimes it’s out before I can and a wee apology has to be made 🙊

[Tia-01]

I think it would be a good idea for you to get his family to take him for a few days this will open their eyes to what you are going through.

My husband went to his mothers a couple of years after he had his brain injury for a long weekend and she couldn’t believe what she was seeing/hearing she knew he wasn’t himself after the accident but didn’t realise the extent of his cognitive impairment.

Although upsetting for her she was glad he did as she felt she could at least help every now and then.

His brother also had him for a couple of days but ended badly as his wife could not put up with him.

I go away with my friends once a year for a long weekend I call it my escape weekend and I need it! Recharge batteries it def helps me to cope.

I hope you get something sorted because you just have to get escapism even if it’s just for a short time. Good luck 😉

[Zomac in reply to Tia-01]

Yes, we need the escapism! Am definitely going to twist the families arms a bit more now and hope I get somewhere, thanks 🙂

[Tia-01 in reply to Zomac]

Start with a wee weekend break see how they manage with him. Good luck 😉

[steve55 in reply to Tia-01]

my wife has 5 sisters and 2 brothers. 2 sisters accept me for the way i am but, 1 one brother in law just laughs when i say something out of line, the others, because i have a brain injury are very wary of me.

is your husband ex forces?

[Zomac in reply to steve55]

No, ex music biz lighting designer. Ex because no way can he do this anymore. Wouldn't look good if he fell asleep, he sleeps for England!, or got muddled half way through a gig!!!

[steve55 in reply to Zomac]

there could be a way round it. you say your partner, but do you live with him full time, is your name on the mortgage/ lease, do utility bills come to the house in joint names? do you claim carers allowance?

have you spoken to adult services at your local council about respite? whats the worst that can happen? they refuse you.

this is the problem, we re kicked out of hospital and our wives and partners arent given any idea what to expect then boom here we go deal with this darling.

steve

[Zomac in reply to steve55]

Oh I do understand about the 'deal with it' bit!!!! He really isn't suitable for respite care, because his problems are such that he doesn't fit.......he cannot survive a week in places that have demetia, confused and wandering people..and that is all that is on offer. You wouldn't think there was anything wrong with him initially, after a while you can see he isn't 'quite right'!!!!!! BIess him! am hoping that after his brother has him for a few days, he can see that, and can see how wearing that can be over time. People, as you know, just don't get it!

[steve55 in reply to Zomac]

do you go to a headways monthly group? if not you should, youll meet other darlings who have to put up with us and of course others who have tbi abi.

why didnt i think of it before, you could form a friendship circle where you meet at each others houses, that would give you some sort of respite albeit for a couple of hours.

steve

[WinB]

I went to a day centre and we all played a game took us 2 hours to finish it as we all had short term memory loss. I only went for the Physio but never got any. After 4 weeks I asked hubs ."Do I have to go as no Physio and just sat around trying to think about who played for Spurs lol...and other games we played but found it so boring and I was youngest there at 65 lol xxx Got to laugh or cry xxxx Good luck with Hubby Zomac ..this is me when asked what do I wasn't for tea "ermmm well what you having oh well I'll have same" Now I give my Daughter a break as she and hubby have been so good. We do appreciate you but you need a break now and again xxxx

[Zomac in reply to WinB]

That made me laugh, I soooo get the comment about what you want for tea!!! I know about that!!!! Xx

[WinB]

Ha Ha I do have trouble in deciding xxxxxx Good luck xxxx

[Charente]

Me too ! My husband has exec brain disfunction. He’s the same person but different , some old characteristics magnified. I try to cope with sense of humour and spending a few hours doing my interests on my own every day...ie running, cycling, shopping with girlfriends. I have more energy when I return. He’s likes a bit of peace to read or watch Netflix so it works for us. Then I make sure we still do things together, like coffee and cake in favourite cafes, meals out , food shopping or park walks where it is nice and smooth and even as he’s a bit wobbly walking.

I actually enjoy ‘ caring ‘ for him as I’m a retired nurse and it’s sort of in my personality. I do annoy him at times though as he thinks I’m fussing too much.

I strive to ensure the house is arranged so he’s as independent as possible.

He’s the same person as well ( the one I fell in love with) and I do enjoy his company and his long term memory is much better than mine. I still can’t work the sit on mower which he does and he does loads that I can’t.

Driving is a huge ( flash point) problem for us. He has passed a test for driving and is fine but I prefer to drive mostly as it does tire him. He has physical and neural fatigue. Also I’m different now too....I’m more assertive and have had to take on main decision making in the family so I’ve changed too.... can’t help it . The driving issue causes a few arguments .....but then everyone has arguments.

My problem is I’m going into hospital shortly for 4/5 days and ideally I d like to get a ‘ live in carer’ . If for nothing else my peace of mind.....Oh dear..NO WAY HOSAY !!! He is adamant he can manage fine.

We ve come to a compromise that my friends are doing a rota. One pops in for tea in the morning ( also checks he’s OK) one brings him to visit me every afternoon and one who lives nearby has invited him to supper every evening.

Also I’m a bit short tempered worrying about my op and I really don’t need to be like that around him. I need to be relaxed and energetic. Not always easy. Be glad to get it over with then we can get back to enjoying life, a different one post accident but it’s still good 😀

Love to everyone in our situation... not easy is it? Xxxx 😘😘

[Zomac in reply to Charente]

Well I don't mind the caring as I'm an ex District Nurse, so sort of same story as in I can easily organise stuff to make him as independent as poss etc as its second nature for me to do, and yes I like doing it , and yes, I fuss too much, apparently!!! I do get time out of the house, love dog walking and cycling, but I used to travel a lot on my own......that I am missing.

We have discussed the live in carer thing so could have a break away......ha ha!!, same reaction!! But, I know one day is max he could manage alone, he has terrible lack of insight into his capabilities.

I have just managed to get his brother to have him for a few days.....thank you to all here for prompting me to give his family a push. No it's not easy, support services limited to non -existent, a good 60% + of his rehab was done by me.

Like the rota system, good idea, and good luck with your op xx🙂

[Orleans1011]

I am somewhat in the same boat my husband can’t feed himself and is incontinence and in a wheelchair he lost his job and I’m a caregiver mom and have a job and soon to be full time student. I now know I can’t take care of him on my own so I am looking for a skilled nurse facility now. It’s so hard I just keep fighting though.

[Charente in reply to Orleans1011]

That’s hard, you must have help and time for yourself. Much love and good wishes xxx

[Cj-195]

Have you got a good carers centre where you live? X

[Zomac in reply to Cj-195]

Yes, but group thingys not really me......may give it a go xx

[Cj-195 in reply to Zomac]

The carers centre is there for you. You don't have to be in group. Maybe help you to have a rest for a morning. Is important that you have a rest. X good luck

[Charente]

Zomac, you re a soul mate, I was a DN too. Not easy is it? Glad you’ve got help from brother and thanks for you good wishes about my op. Anne xx