Disabled Husband

[Notsaintilicious]

My husband has been very disabled for the last 6 years. He can only move 1 hand and has a colostomy and a stoma. He is either in a motorised wheelchair or in bed.

The reason I am posting on here is that Im unable to cope with his increasing needs anymore. He has carers in the morning and evening but they make so much mess and cause chaos- we are on the 4th care co. so Ive addressed this. I also work only part time now as I cannot cope with full time and my husbands needs.

The main problem is the nights whe I may get woken up to 5 times due to neuroligical pain- very difficult to control. He has also become very verbally aggressive and this is what I find so hard to take.

We have been together over 20 years and married for 10 but Ive now lost who my husband was and feel totally exhausted on a daily basis.

We have no children together but have 3 between us - all supportive but have their own careers etc. I would like to think we have a happy family but I cannot accept the way he has been treating me lately.

Im thinking that the next time he goes into hospital Ill refuse to have him home- very very difficult decision to make. Please could anyone offer constructive advice

OP I don't judge you, i have nothing but admiration for you. My NDN had a husband who had a stroke and he was very disabled. He too had one hell of a temper, pure frustration. she had enough, the love she felt had gone. he had another stroke and he went into a home.

OP, what ever you do will be the right thing. Stay strong. you are obviously a very strong woman.

OP, you have seen on here, that people change, do bad things to their once loved ones and so many people try to stick by or with their partners. MN's is nothing if not realistic when it advises "LTB" or DH. Your situation is no different and you have tried harder and more bravely and more impressively than so many.

You have my admiration, you have walked a path I would have never been brave enough to walk, and would fear having to travel. You are an inspirational woman and what you are feeling is both apt and appropriate.

Hello lovely

Big hugs to you - I hope that SS are able to help. You sound exhausted and (quite understandably) fed up. No matter what your DH suffers, it's not right for him to abuse you.

OP, what has happened to you both is dreadful and I cannot imagine what you are going through.
However, it is clear that if he refuses to even try counselling then that puts you in an untenable position. Is there a friend or other family member that could try to persuade him? His life is dreadful for him, so he needs to be persuaded to accept help that, even a little, may improve things.
Otherwise, discuss with SS and your children (and then your husband) the different options that may be available to you.
You cannot go on living this way.
I wish you luck.

I think the medical profession have helped things end up like this, all that disrupted sleep you are both having due to poor pain relief can't help.

Have you spoken to his kids to let them know ss are looking for residential care?

Thanks- Im waiting on another call now

Stay strong

Im so sad but what am i to do Thanks for your messages and support

I have nothing to add but just wanted to say I hope you get the help and support you need. You sound like you have been doing brilliantly so far. I really hope you get the support you need.

Just a thought OP, but if this behaviour is really out of character for him, could it be something he is doing on purpose to drive you away and set you free? I have a progressive disability and would hate to be a burden to my lovely DH. I would hope to have the strength to make him go if things got too bad.
So sorry you are in this situation.

I'm very sorry this is happening to both of you OP. no judgment from me either, just support if you want it x

Have they rung back yet?

Don't let the Social workers put you under pressure to accept the situation as it is. They are obliged to help and they have an obligation to support carers.

Has your husband calmed down? do you think he will be able to speak to the social workers, unless he really has no idea about how abusive he is being, he might be able to throw some light on the situation and might be forced to admit it if he knows he is being abusive.

Im sorry to hear what you are going through OP. No judgement here either. I think you have done so much. My husband has disabilities too but not as severe as your DH. His behaviour has also changed although we had problems before his heart attack. (he also had a small stroke) he has also become shorter tempered.
I think you are a strong woman and a loving wife who has done all she can.
(((hugs))) and dont let SS fob you off. They do have a duty of care.

There'll be folk around through the night, honey, and if SS hasn't come to your rescue I hope you'll have an uneventful one.

I'm so sorry not, what a shitty situation for all of you

It sounds like you've done a fantastic job so far, it's not surprising you're finding it hard to cope. As brutal as it sounds you have every right to be happy and if you feel enough is enough then I for one certainly wouldn't blame you

If it helps I'm coming from two different perspectives on this, I am trained in care work and I am now severely disabled and rely on my DH for everything (I'm a little less disabled than your DH by the sounds of things but my DH has to do all my care and I wake him several times a night every night) I try my best to be supportive and appreciative of DH even when I'm in agony but I don't always manage it, if things got to the stage you are in with your DH I would fully accept him calling time on the situation as hard as that would make things for me

Try and get as much help as you can but don't be afraid to put yourself first for once, you matter too

I'm so sorry for what you are going through.

I have a progressive neuro disability (I'm 42) and suffer bad neuro pain if I don't take my amytriptaline. Has your husband seen a specialist pain cconsulytant at the local pain clinic.

About 1 week in 4 I am wheelchair bound (I get a monthly IV treatment that slowly wears off) but as far as I know I'm not abusive, though using the chair makes me irritable!

I've said to my dh that if my disability means his life, and that of our young dcs is too hard, then id rather be in care than make things worse. My prognosis says that's any time between 10 years and 25 years. I know my dh wold do anything to have me with him, but he also deserves his life.

MayTheOddsBeEverInYourFavour and weegiemum, you sound so brave and pragmatic.

How are things today OP?

I have spoken today with my husbands Palliative Care Nurse who agrees that residential care is going to be the answer.

She has had involvement through the past 6 months and has also had experience of my husbands temper.

They can admit him today to the hospice but I so want him at home for Xmas.

Im so thrown by all my emotions and Im just going to see how today goes

I can understand, at least organise his admittance in boxing day.

You are not required to put up with abuse just because your husband is disabled! If he were not so disabled every poster would be saying LTB without question.

My partner is as disabled as your husband - use of two fingers - and he does not abuse me. If he did I hope I would leave him, though I completely understand the enormous guilt and pressure you will be under to stay. But... he's still a man and he should behave as man ought to a woman, or he does not get to have a relationship with one. You're not doing him any favours exempting him from the responsibilities of adulthood.

On a practical right-now level, I find that setting an alarm and getting up every 120 minutes throughout the night gets me a better overall night's sleep than waiting to be woken.

I hope you will do your best for yourself. You deserve to be respected and loved.

Thanks for that ChristmasIs - really appreciate the comments- really, really not being sarcastic.

Big hugs saint. I can't imagine it's an easy decision.

I hope that the next few days have some enjoyment in them and I'm very pleased the pallative nurse has been of such help to you.

A few days ago a very wise and helpful disability advisor told me "You have done all you can" re a disabled member of my extended family who is in a difficult situation. I found this comforting and it has also given me some peace with my inability to support my dear Mum perfectly.

If you can find a good residential place for your husband which you can get to easily your relationship will almost certainly improve. Will be thinking of you over the next few days.

Happy Xmas to everyone.

Had a very long talk with my husband this morning- before carers arrived.

He now is much more amenable to long term care and we will be looking at homes in January. The Palliative Care Nurse is going to help sorting out funding etc.

There is a good one a few minutes walk away- I worked there for a while before I went into the NHS. I also know a lot of the staff. Its not very pretty, or ensuites in every room etc but the care is excellent.

I will then have to work full time again as our finances will be separated- but this will bring a bit of normality back into my life.

Its so sad that its come to this but I must now start to look after myself a bit more- not helped by having d&v the last 3 days.

My son is a chef and will be cooking today so at least thats one less job- apart from the clearing up!

Thanks again to all that helped with advice when I was at my lowest point. It meant so much that strangers could reach out at this hectic time of year.