Forum

I don't know what to do...

Caring for someone with MS
#1

I don’t know what to do.
I’m so stuck.
I am married and have a nearly nine month old child.
My OH has MS and I have been his full time carer for 3 1/2 yrs.
We have carers that come in four times a day 7 days a week also.
They have ben coming for just over a yr.
It started as once a day but as time has gone on, it has increased.
I gave up my job bcos he said it was my job to look after him.
In the past 3 1/2 yrs his condition has deteriorated.
He is mentally draining me.
I feel trapped.
I have & own nothing.
I have no savings and no where to go.
Even wanting to leave makes me feel guilty.
Guilt is a terrible thing.
I know he didn’t ask to have MS but I feel like I’ve really allowed him to get away with too much for too long.
And now it’s too late.
The situation is what it is.
I tell him I’m struggling.
That I can’t cope with his unkindness, his moods.
His shouting and swearing.
Maybe it’s just that now I have our baby to think about-I value her more than I value myself and I do not want this for her.
I will not have this for her life.
What can I do?
I think about leaving all the time.
I just don’t know how.
Or if I can.
He’s dependant on me.
I don’t know if I can just walk away from an 11 year relationship.
But I don’t know if I can continue either.
I have explained to him until I am “blue in the face”
Today his response was “SO!” & “AND!”
What can I say to that?!

I on’t know what to do.

#2

What a terrible situation to be in. Your husband is bound to be suffering but that in no way makes it ok to pass that onto you and now your beautiful child. Looking after a baby is draining never mind being a full time carer of someone who sounds like he takes you for granted. When some people are ill or in pain contantly I guess they can become selfish and self centred and only see how bad things are for them and forget that whoever is taking care of them have a right to life as well. Have you spoken to his MS nurse, neurologist and anyone else involved in his care? You should maybe think of approaching social services to see where you stand should you come to the decision that it is too much to stay. It is never too late to turn things around as long as you are still willing to be his carer, there may come a time when it becomes too much and no matter what you need to leave. You sound like you have tried to talk to him but have gotten nowhere. Is there no one whom he would listen to that you can get to talk to him about his behaviour towards you. Only you can decide when the time comes to walk away, it should be made easier if you know you have done everything to try and stay but it just became too much. This won’t stop the hurt and guilt you will feel but hopefully looking at your childs happy face will make it easier to bear. Good luck and hugs Linda x

#3

Oh love! What a sad situation…for all of you.

You say your OH depends on you…yes he does, but as he already has carers coming in, he is already in the system. His care could probably be ibncreased if he had no-one at home with him.

How does he treat these outside carers? Is he as rude and overbearing with them, as he is with you?

Does he have a social worker assigned to him? I am wondering if you could talk to that person, confidentially of course.

It is clear things cannot go on as they are. Your baby needs full time care from you. You must be fell totally shattered. Does your OH show affection to the child?

If things cant be improved, then striking out on your own may be the only way to go. If this happens, it is not your fault. Please do not feel guilty about wanting a happier life for yourself and your child.

His needs will be attended to, by the care providers…unless he is abusive to them as well.

I do hope a good outcome can be reached.

pollxx

#4

‘I don’t know what to do’

It’s understandable that you don’t know where to turn- how could you?But it’s important that you look after your own health (and that of the new addition to the family).

Please consider calling our helpline (on 0808 800 2802 ) as it would be good to talk through these issues.

Alternatively visit the Carers Uk website where you’ll find different aspects of support you may find useful

http://www.carersuk.org/support

It’s a good start that you’ve posted here.

Kind regards

Stewart (admin)

#5

I read your post and feel the same. We have no support and the OH does not want to accept it. We argue constantly. I want to leave but feel a failure. She will contest a divorce and she has said she will make things very difficult for me. At the point where I don’t care how difficult it will be to leave but need to. My young children and her family will never forgive me.