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Disabled Husband

(66 Posts)
Notsaintilicious Sun 23-Dec-12 18:34:38

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

Mynewmoniker Sun 23-Dec-12 18:38:54

How about talking to Social Services for a bit of guidance and advice? You sound like you need to discuss a little respite. Your needs are just as important as your husbands and you have to keep yourself emotionally well to cope.

Hope this supports you in some way. I have personal experience of this sort of situation.

HedgeHogGroup Sun 23-Dec-12 18:38:57

No advice but thinking of you. That's a very hard position to be in sad

RandomMess Sun 23-Dec-12 18:39:11

Knowing how apalling SS funding is and therefore the lack of suitable help you will be getting it does sound like a way of getting him into residential care.

Has he got a pain consultant to review his overnight medication? What care is he assessed as needing and what does he get?

I can only sympathise and say that I would understand your actions.

MrsMcEnroe Sun 23-Dec-12 18:41:43

No constructive advice here but I went through a similar situation with a relative and I completely understand how you're feeling. Good luck to you OP.

Notsaintilicious Sun 23-Dec-12 18:43:16

Thanks for the reply- I have regular respite (a week 4x a year) at the local hospice and a lage care package in place.

I only do personal care if the carers arent there- such as hes so tired I have to put him to bed.

Its just the behaviour I can no longer cope with- just so sad about it all
Thanks again

AnAirOfHopeInAManger Sun 23-Dec-12 18:51:48

Could he be depressed?

Have you talked to him about how you feel?

Has he had councling for his disability?

RandomMess Sun 23-Dec-12 18:53:17

How about some counselling for you, you shouldn't put up with his aggresive behaviour - would he have some counselling?

Notsaintilicious Sun 23-Dec-12 18:59:49

Ive had 2 courses of counselling and I found it helpful- if a little disloyal to my husband.

He has been offered it but refuses - I think its the sheer frustration of not being able to do anything- and there is no answer to that.

He was always active and an excellent husband - maybe thats why I feel so guilty

Selks Sun 23-Dec-12 19:22:48

I feel for both of you, sounds incredibly hard for each of you.

I think you need to give some thought as to whether you want to stay in the marriage but get more support, or whether the marriage is no longer viable for you. Either way, to leave it until it reaches the point of refusing to have him back home once he is in hospital seems very unfair on him, sorry. It is his home as well as yours after all, and doing that could be a massive emotional shock for him.
But I do hear how at the end of your tether you sound, so I do think you shouldn't carry on as you are now. Speak to social services - ask for a carers assessment. If your husband needs to go into residential care then you must include him in the planning and making choices - although his disability has a massive effect on you it is his life after all.
Re his unpleasantness towards you - you don't have to put up with that. Talk to him about how it makes you feel and how unhappy you are with it. He may not realise. It may be a product of him struggling to come to terms with his new situation.
I wish the best to both of you.

Mynewmoniker Sun 23-Dec-12 19:24:46

Don't beat yourself up Not.... You are in an unenvyable situation and need support. Do you cut yourself off from it during the day by putting earphones in a ipod and imagining you are elswhere or such like?

Notsaintilicious Sun 23-Dec-12 19:35:57

My husband has now shuted at me and been verbally aggressive- do I now call Social Servces out of hours or do I just sleep on the sofa and hpe it all passes by the morning? I love him so much but not the monster hes become.

MiniLovesMinxPies Sun 23-Dec-12 19:36:13

Do you still love him or is it just loyalty now that keeps you there?

Have you spoken to him about how he makes you feel? Does he show any insight into how your life has changed because of his disability?

You say that you work, so you are not old, will his health deteriorate in the near future? Or is it just stable and he is likely to live for another 30 years and you will be caring for him for that length of time? Is that all you can see ahead of you?

RandomMess Sun 23-Dec-12 19:44:30

I can only think that you need to explain to him that you will divorce him if the abusive behaviour continues, perhaps that will persuade him to get some counselling. You certainly can't tolerate being exposed to this long term you will grow to despise instead of love him.

MiniLovesMinxPies Sun 23-Dec-12 19:53:10

Neurological pain, has your husband has a stroke?

Strokes can effect peoples personalities. Is the anger a recent thing or has he been like this for the last 6 years and you are being worn down by it?

MiniLovesMinxPies Sun 23-Dec-12 19:53:44

has your husband had a stroke?

Notsaintilicious Sun 23-Dec-12 19:55:51

Ive just phoned SS after more shouting- Im 47 and on my 2nd marriage- I always swore I would not take any more abuse after my 1st. Sorry to drip feed but Ive got to do something or I will go under

MrsJREwing Sun 23-Dec-12 19:57:41

I feel so sorry for you both.

I think you need to put him in residencial care, you sound like you haven't been supported enough. Foolish council, as it will cost them a lot more now.

I know it isn't easy as I am on both sided of the coin, a disabled adult caring for disabled children. I know what it is like to feel vulnerable and not the person you were and I know the presdure of being a carer. I have no help at all, sometimes as you say carers are well intentioned their presence overall brings no benefit and they are an intrusive, useless pain in the arse in my experience. One time I was ironing when the carer sat on my sofa for over half an hour doing nothing, she was challenged academically and socially totally misunderstood my condition after I spent ages explaining and kept saying I was depressed, it was worse than having a toddler around. I find you get the challenged type or the bossy put down people.

Set yourself up in a spare bedroom so you get sleep in the short term, organise residential care long term.

lisad123 Sun 23-Dec-12 20:02:08

Sometimes we have to think of ourselves first. Clearly you have done as much as you can and have tried but you cannot put up with abusive, even if he is disabled.
Can you sleep in separate rooms, if he is only abusive at night due to pain? Haveyou spoken to GP about getting more help to manage his pain?

MiniLovesMinxPies Sun 23-Dec-12 20:05:51

What have SS suggested, are they going to come out and see you?

You are so young, this is no life. Even though you love him you owe no one your entire life.

More respite? four times a year isn't a lot when you are also having to work. Could they not offer you a week every six weeks or so?

Notsaintilicious Sun 23-Dec-12 20:07:24

Im now waiting for a call back from SS- I dont know where I gt the strength from tonight to phone them. Im so tired but I cannot take the abuse any longer. Ive made my decision to look after myself 1st.
Keep me strong.Please

MrsJREwing Sun 23-Dec-12 20:08:00

oh and don't feel bad about residential care. I told my dc that I don't want to be a burdon on them if I get worse. Only stipulation I made was for them to check up a lot to make sure I am well cared for in that scinario. I found a charity that trains dogs to help the disabled and I am thinking of applying as I would rather rely on a dog than a challenged or disempoering carer invading my home.

MiniLovesMinxPies Sun 23-Dec-12 20:12:05

We will stay here and talk and listen all the time you need us smile

You are doing the right thing, you must look after yourself. No one can even consider caring for anyone if they don't first and foremost look after themselves.

Notsaintilicious Sun 23-Dec-12 20:15:55

Thanks so much- Im in tears now after yet more abuse- I dont even know you but you dont judge me

MrsJREwing Sun 23-Dec-12 20:19:54

People will judge you, if they have a go tell them to take your dh in then, they will soon shut up giving you a hard time. It will be their selfish anger at you making them face their stuff be it ss money and extra work or friends and family's guilt at not helping enough.

MiniLovesMinxPies Sun 23-Dec-12 20:29:09

We can't and won't judge you. "Walk a mile in my shoes...." No one has a right to judge until they have lived your life with your circumstances.

I love DP very much (we won't marry, I don't want to after 14 years) and I would stand by him through anything but if something happened that changed the man he is into something else, or he needed so much care that I was worn down by it, I would consider residential care. Not necessarily a split/divorce but care. To me it is a practical solution to an intolerable set of circumstances, not a betrayal.

The man your husband WAS probably would NEVER have consigned your life to this, you are not betraying anyone.

TwoFacedCows Sun 23-Dec-12 20:35:05

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.

MatureUniStudent Sun 23-Dec-12 20:41:57

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.

Sunnywithachanceofjinglebells Sun 23-Dec-12 20:43:37

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.

NannyEggn0gg Sun 23-Dec-12 20:46:33

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.

MrsJREwing Sun 23-Dec-12 21:03:14

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?

Notsaintilicious Sun 23-Dec-12 21:07:19

Thanks- Im waiting on another call now

MiniLovesMinxPies Sun 23-Dec-12 21:16:55

Stay strong

Notsaintilicious Sun 23-Dec-12 21:29:27

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

OrangeLily Sun 23-Dec-12 21:33:21

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.

MoominmammasHandbag Sun 23-Dec-12 21:35:53

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.

MrsMcEnroe Sun 23-Dec-12 21:39:03

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

MiniLovesMinxPies Sun 23-Dec-12 21:48:15

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.

Darkesteyes Mon 24-Dec-12 00:28:26

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.

izzyizin Mon 24-Dec-12 01:04:21

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.

MayTheOddsBeEverInYourFavour Mon 24-Dec-12 01:17:06

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

weegiemum Mon 24-Dec-12 01:44:05

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.

MiniLovesMinxPies Mon 24-Dec-12 09:12:20

MayTheOddsBeEverInYourFavour and weegiemum, you sound so brave and pragmatic.

How are things today OP?

Notsaintilicious Mon 24-Dec-12 10:01:52

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

MrsJREwing Mon 24-Dec-12 10:22:36

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

ChristmasIsAcumenin Mon 24-Dec-12 10:39:06

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.

Notsaintilicious Mon 24-Dec-12 10:43:43

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

Sunnywithachanceofjinglebells Mon 24-Dec-12 12:25:32

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

RandomMess Mon 24-Dec-12 12:28:37

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.

Isabeller Mon 24-Dec-12 12:47:07

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.

Notsaintilicious Tue 25-Dec-12 08:13:10

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.

RandomMess Tue 25-Dec-12 11:20:20

I'm so glad you have managed to discuss this with your husband, I hope you can get him into a good home.

TheAccidentalExhibitionist Tue 25-Dec-12 11:34:15

Nots, I hope you manage to have a relaxing day and well done on the conversation with your husband. You are making the right decision. X

DeafLeopard Tue 25-Dec-12 12:26:08

ChristmasIsAcumenin

"You are not required to put up with abuse just because your husband is disabled! ...
I hope you will do your best for yourself. You deserve to be respected and loved. "

Exactly that ^

Nots I'm really glad that you have come to a decision that will bring you the happier life that you deserve. Have a lovely Christmas

TheWombat Tue 25-Dec-12 12:40:28

I have been lurking on this thread with lots of sympathy for you Not. I'm really glad you had a serious chat with DH and that there seem to be some good care options for you close by. I hope you have a restful Christmas and that the new year brings you a little respite.

It sounds like you have been doing an amazing job of caring in really challenging circumstances.

maras2 Tue 25-Dec-12 17:49:45

All the best for the futre Notsaint.Well done for being such a caring partner for so long.

Mynewmoniker Wed 26-Dec-12 19:17:21

Just catching up after being away for a couple of days. I'm pleased you're moving forward from where you were the other day. Best wishes to you both for your future plans X

Onebadbackandalostpelvicfloor Wed 26-Dec-12 20:22:56

Hi I couldn't read and run and hope this is of use.

1) you can request a carers assessment to meet your needs from ss this includes access to respite, day centre breaks, sitting services, emotional and physical support and pointing to carer support groups

2) if you have carers more than 4x daily you are eligible for residential respite or a space I'm residential home if you meet the financial requirements (under £30k)

You can also access help for equipment and care costs too

Unfortunately in many areas you are looking at a 6 week wait for a call back before a 12+ week wait for a community social worker visit unless it is a real emergency so it's good you've called now

When they call back have a clear idea of what support you want to access and discuss this with them. Write down any questions you have and ask for any pertinent points to be printed and sent to you

Best of luck

Notsaintilicious Thu 24-Jan-13 14:20:49

Just to give all an update- my husband has been fine since the day before Xmas Eve.

I did not realise as he did not tell me that hes quite blind now- his lack of movement disguised this. He has no peripheral vision and is seeing double. These are 2x separate images in that there is nothing wrong with his eyes just the way his brain is interpreting his vision.

He has Primary Progressive MS and its been very aggressive. I will be taking him to the hospital for an urgent eye clinic appointment on Monday.

We have spoken at great length but he does nt always tell me if there is a new symptom as he does not want to worry me- I have told him that I need to know what Im dealing with!

Have got next Respite booked for February- thanks again to all that offered support X

YellowTulips Thu 24-Jan-13 19:12:51

Hello OP. Just seen this thread and my heart goes out to you.

I'd like to offer a different perspective on your situation.

I was very close to my Grandmother, she was an amazing woman. When she was only 62 my Grandfather had a stroke that left him paralysed on one side and changed his personality from a sweet, kind and very loving man, into a a very selfish and sometimes aggressive bully.

They had been childhood sweethearts and very much in love. My Grandmother insisted that despite his disability she wanted to care for him at home and felt very strongly that not doing so was a breech of her marriage vows.

Over the next 10 years, my mother and I watched as a wonderful, vibrant and fun loving woman was worn down day by day looking after a man who pushed her to her physical and mental limits in spite of all the support we could provide and at home care provision and respite services.

My mother and I begged her to place my Grandfather in residential care. We both knew that in his right mind, this is what he would have wanted. He loved her so much he would have not wanted to see her suffer through caring for him given the circumstances.

She would not listen and when he finally died she was unable to enjoy her remaining retirement as the toll on her heath was too much. She died only 6 months after he did. My mother and I were heartbroken.

I tell you this not to make you feel sad, but to ask that when making all these decisions you do think about your needs and not just those of your DH.

Sadly you can't change the health of your DH, but you can make sure you don't sacrifice yourself in the process. I would not wish for your children to witness something akin to my Grandmother's decline in you.

Best of luck - I know how tough it is xxx

Darkesteyes Thu 24-Jan-13 20:38:38

Notsaint im sorry to hear what youve been going through.
Yellow thats a post that rings true.
My DH is partially disabled and we had problems before he got ill. He hasnt so much as held my hand since around 1996.
He never hugs me or shows me any affection. I asked him to go to counselling and he refused. I then had an LT affair from 2003 to 2008.
In 2006 he became disabled after having a heart attack at home then a mini stroke in hospital.
I have become very bitter and depressed. The illness he has has wrecked his breathing so he cant walk around.
My own DM is very mysogynistic partly due to culture and partly due to religion and she blamed me for the affair.
Ive already decided that if he gets any worse i cant care for him. I just cant do it.
I dont think its fair that it should be expected of me because my feelings havent mattered for a long time before his disability. Sorry to hijack.

YellowTulips Thu 24-Jan-13 21:11:54

Dark - what a sad post.

I can only re-iterate my post above by saying you have as much a duty to your own physical and mental heath as your husbands.

My Grandmother was worried what people would think if she said "I can't do this anymore" so she kept coping until it killed her - and my mother lost both parents. The reality was that all her friends and family didn't want her to keep coping. We wanted her to be happy. She deserved to be happy.

So do you.....

Darkesteyes Thu 24-Jan-13 21:24:53

Thankyou Yellow. Your grandparents sound like they were amazing people.
My aunt (DMs sister) is going through the same thing. She cares for my uncle who had a massive stroke and has been left brain damaged and housebound. She rings DM crying down the phone and DM has no patience with her because she keeps crying all the time.
Shes her sister FFS. But shes only a woman so her feelings dont matter!!!! IF DM saw me treat my DB with such disdain she would be all over it. Sorry im a bit moany.
Your grandparents marriage sounds wonderful. Two people who cared for each other very much.
And like you said in his right mind he would have understood totally because he loved her so much. x

Sunnywithshowers Thu 24-Jan-13 21:40:18

Hello lovely

I'm glad that things have been better between, but am sorry to hear that your DH is now nearly blind: I hope the appointment goes well.

My DH has secondary progressive MS and it's a bastard. He doesn't depend on me much yet but I'm sure it's coming.

Big hugs to you. xxx

YellowTulips Thu 24-Jan-13 21:45:27

Sounds like you don't get much support from your mother and neither does her sister.

Perhaps you should simply cut out the middleman (or woman in this case)? I certainly wouldn't pay any attention to what she thinks or let her influence you one iota.

I think until you have been through it or seen it happen to someone you love its hard to appreciate just how draining caring for a disabled partner can be.

Add to that when either through the disability or in spite of it, that person is at best incapable of demostrating any love or affection or at worst downright abusive its nothing short of soul destroying.

Darkesteyes Thu 24-Jan-13 22:10:43

Thanks Yellow. x

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