Tricky situation.

[Iliad]

I hope this is a good place to put this as I need to get something off my chest and maybe some unbiased opinions.

I have a situation that is really driving me nutts at the minute and I have no one neutral to talk about it with. So I have no idea if I am being unreasonable or not.

Erm... where to start?

Ok, I have been with my wife for 10 years now and married for 3. 6 years ago she became very ill and now has a form of MS that has made her bed bound, after which I became her main carer. We have a 3 year old son together who I have basically raised on my own since birth, with a little help from Grandma (my mother) some weekends, as my wife is unable to do anything. Once he was born my priorities shifted from being my wife's main carer to raising my son. So I'm basically a single father and a carer for my wife.

The problem being my wife now wants to move back down to Colchester to be with her mother, we live in Stockton on Tees.

I have a huge problem with this and really do not want to go down there because I will loose all of the support I have for my son at the minute and will end up being trapped in a situation I do not want to be in.

She says it will be fine as her mother will help look after our son. The fear I have here is that our son is her only grandchild and in 3 years she has come to see him once, twice if you count her coming up for our wedding. She hasn't really shown any interest in being a grandma in my opinion, more that she just likes the idea of being one.

So I fear I am going to be left with no support for my son and myself.

I feel that the best place for him is here where we are with the two people who have raised him so far, myself and my mother. He has also just started nursery which gives me a little break on a morning to pop into town for some shopping or just have a sit down for five minutes.

Another factor to add into the equasion is my wife was always told she could never have children so our son really came out of the blue.

In the last year or so my wife has become very hard to live with due to her condition and probably the medication she is on. I feel with a lot of the things she says she isn't living in the real world so it is exceptionally difficult to have a rational conversation with her.

One day during one of our sort of conversations the idea of seperation poped up, fine, if that's what she'd like then fair enough as I'm having a hard time of it at the moment. The problem being she either wants to take our son with her or joint custody. Taking him with her dosn't seem like a sensible option to me as she can't look after him, she sees him maybe 5 minutes in a day, I don't like him going in the bedroom because she smokes in there and she has equipment in there which isn't child friendly, mainly for a kiss goodnight. Or he would be brought up by her mother who afformentioned dosn't seem that interested. I don't think joint custody would be feasable because of the distance.

The only thing I can think of that would be best for our son would be for me to have full custody. I'd have no problem with them coming to see him whenever they like or taking him down there to see him on a reasonable regular basis.

I don't want her to have to go away from her child but that decission is up to her. I've said to her you have a choice of either staying here with your son or moving down to be with your mother as I have no interest in going down there and I'm just trying to think of what is best for our son.

For me personally the best thing would be if she moved.

All I want is what is best for my son and I feel like I'm banging my head against a brick wall.

It's a really difficult situation with no real easy answer and I really do not know what to do. I love my son so much and just want whats best.

So if anyone has any advice or ideas I would be really greatful.

Sorry if none of this makes sense and it's a bit mishmashed, there is probably lots I have missed out so feel free to ask any questions and I can fill in any blanks.

Take it easy and have fun.

I meant to say I think the child should come first here. He shouldn't be isolated and should keep a sense of normality and positivity as much as possible in this sad situation. I honestly think that means staying with you.

www.mssociety.org.uk/applications/discussion/view.rm?post_id=144

Have you tried posting on the above site? If you haven't it could be well worth giving it ago, there is a forum for carers, many will understand your position and they are a very friendly bunch,

I can understand how you are feeling, although I haven't read all the thread, but it sounds as though you are divided between being a carer and a father. I have no solutions, I am sorry, but I know how very difficult living with someone who Has MS is, it is a horrible condition that effects the whole family.

I hope you can find a solution to your problems.

I agree that you shouldn't feel you have to move away from your support.

MS is a truly awful thing to have to cope with, and it clearly affects more than just the person with the diagnosis.

It sounds like you have done everything you can, if she has you and all these proffesionals trying to improve her quality of life but is refusing help, you can't do much else. When I first read your post I was quite surprised that you sais she was bedbound, even the most agressive form of MS don't usually mean that someone is confined to a bed, at least when they are not very ill with it or having a relapse. But you have said that she could become more a part of your family, and chooses not to. There are MS therapy centres across the country that I know can make a big difference to people, but they have to be prepared to travel to them. Certainly MS can often cause difficulties with cognition and depression, but the person with MS still has a choice to make.

If you feel you have done your best, you need to be honest with your wife and tell her that you no longer want to be married to her. It might be a good idea to get all the information you can beforehand though, such as whether she could access 24 hour care and an adapted home through social services, either in the area you are in or closer to her Mum. Or would her only choice be to move into a resedential care home? Maybe she would expect you to be the one to move out, even with your ds, if your home has any adaptations and she could get help to stay in there. You said the MS society didn't appeal to your wife, but they may be able to help you with practical issues like this.

Thank you all once again.

Just to clear up on the MS front. It's not your normal form of MS that she has where the damaged areas are small and scattered around the brain. Her damage is in one large area, which has totally weakend the left side of her body, the left arm in perticular which is locked in a bent position with a clenched fist and a very weak left leg, her right leg is becoming weaker now also. Anyway, not a true form of MS but the closest thing her neurologist can associate it with is MS. And to me it has also affected her memory, thought processes and so on.

For those who asked we live in a bungalow, so no stairs involved, the bedroom is next to the living room, our son does say I'd like to go and see mammy and can open the door himself (I always supervise him when he is in there) but he is usualy only using this, as far as I can tell, as an excuse to go into the bedroom and find things to play with that he knows he shouldn't be playing with, as I believe all children do in their curiosity.

Yes I have considered counselling myself I'm just unsure if it will be of any beneficial help, it may be I don't know.

And yes of course our child should come first, I am very aware of this, and it's what I am trying to think about.

I may and go have a chat with citizens advice, I never really thought of them, so good idea. Maybe they can give me a good idea of how to proceed with the best course of action.

It is horrible and I wouldn't wish it on anybody, it truly does affect everyone around the sufferer, but it's not always easy to make the sufferer see this.

Thank you I shall look into that MS Society site.

You are your sons main carer and I think you should seek legal advice on getting full custody of him, stay where you are with your support network and let your wife move back to be with her mother.