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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

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

Thanks Yellow. x

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.

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

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

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 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 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

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

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

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

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.

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.

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


"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

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

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.

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.

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.

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.

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

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

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

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

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.

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

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

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

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

MayTheOddsBeEverInYourFavour and weegiemum, you sound so brave and pragmatic.

How are things today OP?

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.

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