Struggling with husbands disability

Speak to your GP and make you tell him how this affecting you. With some help you may be able to cope much better.

You cannot force him to do anything

Talk to his gp and share your concerns

Schedule carers now so you also take care of yourself

This is not a short term situation - don't let him ruin the rest of your life

I am with you in this. My husband is terminally ill and I feel exhausted and jittery all the time. Contact GP and he will help you organise carers and get in the system. My husband is about to go into respite for the first time and I am going to have a rest. The Attendance Allowance will help to pay for some carers. You have to help yourself in this - it's a fight sometimes.

His negativity probably stems from his frustration. Don’t be too harsh on him. I think you need to talk to your GP. I am divorced now, but I often wondered how I would have coped, having watched one of my friends deal with a sick husband. It drained her and he was someone who didn’t like strangers caring for him.
For all those caring selflessly for their partners

I fully understand. Feel scared and worried about the future. Nothing terminal but definitely worrying and life affecting. My DH is awaiting tests for various problems, feel that I will become a carer when I have failing health myself.
Keeps me awake at night, AC have their own lives and I would not want to burden them in any way.
Cared for children, elderly parents, grandchildren and now feel this is the end result. I feel guilty to feel this way and look longingly at people that can live their lives and retirement as they please. At my age needing to take refresher driving lessons so that life can go on more or less as normal.
Perhaps feeling bit sorry for myself, but not what I really wanted at this stage.

Hi there
What could carers do exactly ?
We have had some in the past and we weren’t impressed

I think you need to contact Social Services and ask for a Carer's assessment. Or contact AgeUk or Carer's UK.

I assume you are getting all the benefits to which you are entitled.
AgeUk will help you to check or it can be done on line.

The lower level of Attendance Allowance is well work applying for. AgeUk or CAB can help you there too.

Worth not work.

Notjustaprettyface

Hi there
What could carers do exactly ?
We have had some in the past and we weren’t impressed

The carers my late partner had when he were terminally ill and bed bound weren’t of any particular help at all . They’d pop around for 10 minutes or so three times daily , by the time they gave him a quick bed wash in mornings it were time to leave , and afternoons quick cup tea & sarnie were just about it , also some weren’t particularly friendly and always seemed in a hurry to leave . Not a good experience by any stretch of the imagination .
Also , after the first 8 weeks or so you have to pay , and they don’t come cheap .

He's probably very afraid of how he's deteriorating. Do you think he would talk to someone like his GP who could prescribe 6 sessions of counselling.. I would not try to encourage him to do the excercises, let him have control of his life as he possibly feels he is losing it. I think the person who needs the most support at this time is you.. How can you make your life more pleasant and less stressful? Do you feel able to leave DH alone? if so, can you treat yourself ie coffee with friends, beauty treatments,nice walks etc. If you can't leave him do you have friends who will take him out or sit with him?.. Also contact Age Concern and see if they can help you.. I hope you manage to find a way through this..

Our village has volunteers who will sit with housebound people or take them out if that is feasible.

If you have to pay for Carers yourself, try to find a private company as you will have more control over when they come and what they do.

If you pay privately for council provided ones,they can be haphazard and the council charge a premium for administration.

You need to build in some time for yourself, I know that it's difficult, but it's the only way you can carry on. Building in some daily exercise will help, even if only a walk in the park. I would also speak to your GP, our surgery has a specialist who will discuss what help may be available bit only for your husband but you as his carer.

His attitude overall is very negative and I try and help him as much as I can but he is also unpleasant to me at times

Have you told him how this makes you feel?
Could you have a heart-to-heart talk with him and try to agree that you are in this unpleasant situation together and need to work as a team?
I think we often lash out at the nearest person to us when they're only trying to help ☹️

Notjustaprettyface

Hi there
What could carers do exactly ?
We have had some in the past and we weren’t impressed

It rather depends what you and he need!

Excellent posts on this thread.

Has care now become a postcode lottery?
By the by perhaps, but I know a younger man who will be off work for 3 months to a year due to a very bad break affecting his foot.
He is a carer for his mum who needed an op. She had to have it cancelled, as his fall came about two days before her op. So she wouldnt have had aftercare.
They did get a OP visit quick though.
I just assumed a Care Package would have been put in place.

My point is really, are Care packages disappearing everywhere?
In which case the posters suggesting arranging care for him and yourself, sooner rather than later are spot on?

I dont think anyone can be forced to do their own exercises?
The older I get, the more I realise this.
I will pray for you and your husband.

kittylester

I think you need to contact Social Services and ask for a Carer's assessment. Or contact AgeUk or Carer's UK.

I assume you are getting all the benefits to which you are entitled.
AgeUk will help you to check or it can be done on line.

The lower level of Attendance Allowance is well work applying for. AgeUk or CAB can help you there too.

All excellent advice from kitty.

Just wanted to say to Notjustaprettyface that I have been in exactly this position, and it is I know very hard. So you have a hand hold from me.

When my OH eventually became very unwell and virtually helpless the situation was clear and services rallied around to help - with more than a bit of a battle and a boot up the rear end from me! - but the stage you are at now was in many ways the hardest, before he became very obviously in need of care.

There are a mixture of emotions in this situation that can be hard to deal with. Guilt is pretty well top of the list. Once I began to feel resentful of all that I was having to do and my vanishing normality, the guilt came piling on. I had to remind myself that it was inevitable that I would have negative feelings in the position I found myself. I therefore made the decision that I had to create a situation where I could inject some normality into MY life in order to stay sane and to be able to the caring tasks that fell to me with a good grace. I know this sounds selfish, but there was no way that I could tie myself only to care tasks - or to battling to get help.

I therefore organised care so that I could continue to sing with a choral society, and to run my choir. It gave me a real break - and meant that I had something other than incontinence and pill regimes to talk about! Sometimes I felt bad about going out, but I knew that it was essential to the integrity of whole scenario.

Please do not feel bad about any resentments you might feel - we are all only human.

I hope you will be able to get a proper diagnosis for your OH and to move forward with care.

Hard for you and sad & worrying for him.
No point in nagging him to do the exercises if he doesn’t want to.
Choose your moment to talk to him calmly
- it’s up to him to try and strengthen his muscles.
- No use getting angry.
- There probably won’t be a magic pill to fix him, so he’s going to have to adapt.
- Doesn’t mean you waiting on him or making your life miserable.
- May need to organise more dr appointments for walking aids? Look up Turbomeds on Google - help with balance/walking - less falling

You need to go out every day, meet friends for coffee, extra trips to hairdresser, shopping, library,activities?

Has he any hobbies he can still do? Buy him quiz books, puzzles, Lego or aeroplane kits to make, painting by numbers? Maybe a special film once a week to look forward to? Who knows what could interest him?
Doesn’t sound like he needs care yet, just something he can do to interest him.

I do think it is a Postcode Lottery as to carers,my next door neighbour has a visit from them 3 x daily they are supposed to check he has had breakfast & his medication he does however fib when asked if he has taken them they never check and are in and out in 5 mins I know this as they park next to my car.
My DD works for an Agency in another area and they go in for 20mins each visit giving a shower or wash and prepare a quick meal for their clients sometimes with 2 x carers if the client has other needs,in my DDs area there is option of respite care but the waiting list is very long and sought after.
Please take care of yourself OPs

You have my sympathies.
A friend of mine has a husband with dementia, made worse by a stroke. After a few years she could not cope any more, incontinence being the straw that broke the camel’s back, and he went into a home, self- funding. Now his money is coming to an end, and he is due to be re- assessed. His wife was told he will probably have to return home, with carers coming in. She is distraught.

SuzieHi ''no point in nagging him to do the exercises if he doesn't want to'

well yes, and yet. If doing the exercises is going to make him get over his disability, then I can see why Notjustaprettyface is disappointed, and even angry, that he doesn't want to. Because if he doesn't, it is not just his life that will be impinged on, but hers, and that for many years to come. It is HER life too.

I have a much younger friend, early 50s, with OH just a couple of years older with multiple health problems. He should do physio, but he won't. He should stop smoking but he won't (she did to support him!), should stop drinking, but he won't. So she knows it will heavily impact her life, and turn her into an early carer, and that of children- not just his. Refusing to do what you have to do to get 'as better' as you can, is very selfish indeed. He won't get outside help either.

Cabbie, I'm not sure but I think your friend can refuse to have him home. He won't have improved in the interim and she will, obviously, be older.

Does he get any nursing funding, I wonder?

He could have to move to a cheaper NH if she refuses to have him home or she could be asked to pay a top up.

AgeUk, again, would be a good place to start.

Disclaimer- I do volunteer for AgeUk but they are brilliant anyway. At least round here

Cabbie21

You have my sympathies.
A friend of mine has a husband with dementia, made worse by a stroke. After a few years she could not cope any more, incontinence being the straw that broke the camel’s back, and he went into a home, self- funding. Now his money is coming to an end, and he is due to be re- assessed. His wife was told he will probably have to return home, with carers coming in. She is distraught.

That is not right.

SSD will assess him to decide whether he qualities for care, and they will then decide how much he has to contribute towards the cost. They may say that the home he is in is outside their budget limit, in which case they might encourage the wife to seek a cheaper home or to "top up" the fee. They cannot decide that he must go home - his wife needs to make it clear that she cannot care for him and they must put in sufficient care with her out of the equation if home is the joint decision.

It might be that he qualifies for Continuing Health Care Funding to remain where he is with the NHS footing the bill. Try this website: www.beaconchc.co.uk/

I agree that refusing to do the physio exercises is very selfish, also to do them half heartedly is probably useless.
From my experience, adults have to want to help themselves - children need reminders and lots of encouragement , sometimes bribes to things they don’t want to. Adults should be aware of consequences and the affect on others!
Illness and fear make some people unreasonable and angry, while others are stoical and grateful to others who help them.
Notjustaprettyface definitely needs some advice/support/ideas from gransnet to make her situation better.

Physio can be a mixed blessing and nowadays it is becoming a substitute for proper diagnosis and treatment because these are not available. .

One of the main reasons I needed a micro-discectomy was that some physio exercises I was given triggered the disc prolapse. Repetitive abnormal movements are unwise.