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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.

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