MS Society UK | Forum

Hi!

Hi. My name is Jocelyn and I’m 45. My husband was diagnosed seven years after we married. At the time we had two little kids and I wasn’t sure how to plan. Now I know of course that you can’t really plan… Anyway, I would so much appreciate some advice.
We finally had a doctor (we have tried several) that actually told us that likely he has PPMS. He literally was diagnosed after his 40th birthday. I’m younger than him by 8 years and have been with him since I was 24 years old. So my question is how I deal with all of the backlash? He is suffering and I know it. I literally bring him breakfast, lunch and dinner, clean up any bathroom accidents etc etc. He somehow got achilles tendonitis and has been crawling around. But he just gets so ridiculously condescending and cruel when I offer suggestions like stretching etc. I have wanted him to get a wheelchair so we can do things and the doctor finally convinced him to get one “just so he has it”. I see where things are going and I love my husband. My question is how do I react when he yells at me to leave him? I told him I didn’t want to and he said too bad. I’m giving you the out.
I can’t deny that I don’t feel sorry somedays because I was basically a single parent because when he COULD do things (go to the kids’ sports events, school award events etc) he didn’t. And soon he absolutely couldn’t unless he had a wheelchair that he refused. My kids are crushed that he chose not to go to their high school graduation. I know he is suffering. I just don’t know what more I can do at this point. I’m literally doing everything around here. This summer I finally hired a neighbor boy to mow the lawn so that helped a little. He still works and is fortunate to be able to work from home. He’s just becoming more and more verbally abusive and hates when I spend any time out of the house so I don’t. I literally haven’t seen most of my friends in a year. My kids are totally screwed up and are in therapy over all of his aggressive verbal explosions. I don’t think he can help it but… Ha, well that was kind of a long, whiny intro but I would love some help and/or just to be listened to I guess. Thank you for having me!

Hello, I’m James. I guess in many ways I am similar to your husband, that realisation you can’t do or be the exact person you had thought about when you were younger. Sometimes suggestions about how this would help just points out exactly what you know and even though it comes from the best place can be hard to take.
It’s hard sometimes and maybe you do snap at the person you love the most. It sounds like he needs to go on a bit of a mental journey and decide if aids like a wheel chair or maybe a mobility scooter are a price worth paying for having a much more ‘normal’ life. I found people are much more accepting than I thought.
That is easier to write as you can feel like your giving up its only after you realise what you are actually doing is moving on and trying to make the best of a crap situation.
It’s different for everyone and talking really does help, for me talking calmly about the impact MS was having on everyone else really helped. It was good to know people were fighting in my corner and actually I needed to accept it or everyone’s life would be crap.

Good luck and stick with doing everything right for all

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I’m new here too, Jocelyn. I know this is blunt, but it sounds like your husband wasn’t the nicest person before this came along and this is clearly antagonising him. He’s looking for a direction to point the finger of blame at and it’s you, unfortunately. Does he treat anyone outside like he treats you and the children? It sounds like he finds any offer of help and assistance patronising and I wonder what his attitude is to anyone that has the temerity of stand up to him x

It’s not that he wasn’t nice but he’s got quite a large ego. His little brother was born one year almost to the day and has CP with brain damage so he never got attention as a kid. He definitely was an attention seeker as an adult and he got a lot of attention from women that inflated his ego even more. But he also was a mentor at Big Brothers (a charity) as well as sitting on the board of a charity that helps less fortunate people. I see how much he struggles and we are trying to move so he doesn’t have to do stairs. He treats everybody the same. He doesn’t want help, he wants to be able to take care of things and hates that I have to do everything. But his delivery UGH is ridiculous and I’m not sure how my feelings fit in to this when he is the one that is enduring the physical part of it. But just writing that makes me sick because this affects everyone. But if you say that then he does his “it’s real easy for the people who don’t have to do anything” blah blah. do you have MS or your spouse?

Thank you James. I appreciate the honesty and it is nice to get another male perspective. I wish you well and thanks for responding! :slight_smile:

Hi Jocelyn,

This situation sounds really tough. It is impossible for me to put myself in either of your or your husbands shoes. I can explain how I have felt about and reacted to my MS which may not be of any use but you never know.
I got pretty angry with my condition and how my body no longer worked properly, I thought my useful life was essentially over. Discounting whether this was the case, you might imagine just how negative I felt. It took nothing to make me a shouty thoughtless git, and I did feel it might be better if my wife should not hang about to deal with the consequences of MY problem. I had a couple of things pointed out to me 1: Anger wastes far too much valuable energy & 2: If the roles were reversed how would I be (or feel)
Reading your post, I do think he needs to be more considerate to you and your children. In my opinion it is up to all of you to make the best of a crappy situation, and sometimes this will mean that you need to be kind to yourself as well as others. I will stop before i disappear up my own exhaust pipe.
I wish you and all your family the very best.
Mick

I’m sorry for taking so long to respond. Life got in the way, as it does. I’m the one with MS. I’m SPMS and things have changed quite considerably over the last five years. My mobility is quite compromised now and things have had to change.

I understand that it’s difficult for the partner, especially as the partner is usually prime carer and THEIR needs are easily overlooked. I wonder, so you have any support, in the shape of a sibling or a close friend? You sound a bit isolated

@hopscotch
Hi Jocelyn, I’m sorry to read you are in this position. I have to say that I can see your situation from both sides of the fence. I’m both a carer for my H (with a different condition) and I now have RRMS. So I have both his stuff and my stuff to contend with. We don’t qualify for carers so we manage between us as best we can.

I can understand your husband getting frustrated, and with it angry. Not being able to do the things you used to be able to do is the absolute pits… but and this is a BIG but - that doesn’t give him an excuse to be verbally abusive towards you, nor to stop you from going out to see your friends if you want to. You need some ‘me time’.

On the practical side, you could approach the SPOA (single point of access) team of your local authority and request an assessment of his needs (and yours!) and see if there is any external help you could get, even if it’s only a couple of hours to give you some time to yourself.

I don’t have much in the way of other practical suggestions for you (I’m still trying to get my own house in order!) but I hope you can find a way to not feel so alone with it all. Feel free to offload on here as much as you need to. We are good listeners.

Willowtree

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