Struggling with husbands disability

I am really sorry to read about your present situation. Whilst not my husband, it was my two parents and father in law in their 90s, who brought me to a standstill. My father could be quite abusive threatening to disinherit me if I did not do my duty, my mother kicked me and insulted me as she had dementia, my father in law was infatuated with a women years his junior and was shovelling all his spare money into impressing her whilst we did all the caringand meanwhile my husband got grumpy if I spoke to him about it all. I went to see my GP and he told me that the problem should be shared and if I felt I could not cope to get the whole family and parents together and explain the situation. It is not just down to you. Like any team, it is about family. There is always the excuse that the children have their busy lives but often these lives include skiing holidays, children having to be taken to horse riding lessons, friends around for dinner. BUT your situation is vital for the survival of the older generation. In times gone by the whole family rallied. Now the responsibility falls on the shoulders of normally the spouse. Please speak out and stand up for yourself and express your needs to so that ALL your family are aware of what they can contribute. Sorry, if this sounds all a bit loud, but I allowed myself to be totally burnt out and it has taken SIX years to feel vaguely normal again, but, believe me, I avoid anyone outside the family who 'needs' me to drive them to anything, provide support etc as I 'need' me too! Wishing you all the very best!

I'm sorry to hear that you and your husband have run into some difficulties. That you're feeling frustrated and overworked is totally normal. Always keep in mind that it is acceptable to ask for assistance and look for comfort from others. Have you thought about connecting with a caregiver support group or making an appointment with a therapist or counselor? You could also seek the opinion of your husband's doctor about the difficulties you're encountering. Take care of yourself, too; if you need a break or some time off, don't be embarrassed to ask for it.

My husband’s mobility has changed in four years and he walks with the aid of two sticks inside the house and can only walk outside for a very short distance. He has various problems but nothing life threatening. He still drives but I feel he is lacking confidence with that. I have to do everything for him, but he could do more for himself if he wanted to. Because I am reasonably healthy for my age (I count myself lucky) but it is very draining. My children last year asked him to step up and help me more but that hasn’t happened. He would love it if I spent all day looking at mindless tv together. I just feel he is so selfish and it is a battle to just think of getting me a hot drink. He has lots of support and advice from medical professionals but I know he can’t be bothered to help himself. He has no interests despite my encouragement.

So glad it has helped 62granny. But the problem here is that Notjustaprettyface's OH doesn't want to do the exercises and would probably refuse outside help. That is what is making things so difficult for her (and him too, but it is his choice).

Ask your GP. If there is a national exercise referral scheme in your area and if that would be more suitable for your husband , they are usually group classes for usually older people who have mobility or breathing problems sometimes being part of a group is better than you trying to get them motivated at home. Also see if there are any men's groups in your area Facebook can be a good source of information like this so Get the kids on board to find out what is out there, they are sometimes classed as men's sheds type of group. At least you would get an hour or two respite a week and it is surprising how this can motivate them into doing a bit more . There has also been a big drive in our area on men's health and wellbeing support.
You can encourage say we will do some of the exercises together but perhaps getting him motivated is the initial problem as they can't see past what is wrong with them here and now.
My husband had a stroke 5 years ago that has left him with mobility problems but getting trainers who are trained has motivated him much more than I ever could. We do pay privately for this but it is worth every penny.

How can the adult children help in this case?
Talk to the father? Made him take his meds?

You can take the horse to the water but you cannot make him drink

There is a point where professional help is needed to take care of a relative

So many cases reach that level but relatives choose to burn out instead

Can your adult children not help in some way? Do they know that you are not coping?
My husband had multiple health issues and I knew I had to be ‘selfish’ in a sense to hold it all together. I had a small caravan in the country 50 miles away and my DS would come over and stay for a couple of nights. How I loved those breaks! Also remaining in a drama society etc. A ‘phone call to check on your DH and time to feel like one’s old self.

You need your own life, which is being swallowed up by your DH and can lead to you becoming completely drained.
Do try and arrange things so you get out more.
You will be no use to anyone if you do not look after yourself.

kittylester

I suspect that the op's husband could be depressed. And, who wouldn't be.

Indeed- but this is very hard on the OP. She may well be depressed to, especially if her OH doesn't want to do what is required to help himself, and her too.

Thank you so much everyone for your support and all the advice
I will have to reread all of it to take it all in
Knowing they there are people out there with similar situations does help even if the actual problems can’t be totally sorted out
This is where forums like this are great
Thank you

Illness does cause anger and frustration and it’s usually taken out on loved ones never to outsiders. I know from personal experience and did reach the end of my tether looking after my mum.
You have been given some good advice on where to get help. I hope you do it will help you to have more time to yourself. 💐

I suspect that the op's husband could be depressed. And, who wouldn't be.

Of course Lucky, each case is different. But if specialists advised him to do physio and he refuses, he is deliberately not aiding his recovery, and putting more pressure on others. It can become a form of cohercive control.

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.

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.

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/

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

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.

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.

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

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.

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.

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.

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!

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 ☹️

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.