Trying to support my husband.

Caring for someone with MS
1

Hello, this is my first post. Hopefully in the right bit.

My husband was recently DX with RRMS. I’ve been trying my very best to support him through this difficult and scary time, dealing with the DX and deciding what course of treatment he should go for. He’s currently waiting to start his first DMD.

I understand that it is extremely difficult for him to come to terms with his MS DX and everything that comes with it. I understand that he feels he’s lost his old self. That he worries daily about how he’s going to feel, if he can manage at work. I know he worries unnecessarily about being the sole provider (I’m a full time mum to our 3 children), he also enjoys his work for what it is, so he worries about his ability to continue as he used to.

No matter how reassuring I try to be, he still looks at every situation with such bleakness that I struggle to remain positive. I’ve always been an optimist, even when he had his DX I clung to the thought that the DMD’s available were so much more effective than they used to be. Of course, I’m not the one who has to live with this terrible disease, so I can’t truly know how he feels about it all. I’m glad that he has found a few different groups and pages where he can talk to people about his symptoms and the medicines, but I do sometimes feel like I’m out of the loop. We have always talked and shared everything and now I feel an outsider and I’m sure he feels alone, trapped in the bubble of MS.

His mood swings can be unbearable and a lot of the time the children tend to bare the brunt of his frustrations. I’ve spoken at length with them that it’s not daddies fault and that they need to try their best not to get too upset. But I also want them to be able to tell him how it makes them feel. This is probably the most difficult bit to come to terms with. It’s like switch has been flicked. i can usually tell when he’s reaching his limit as he will be extremely tired, but making him have a lie down isn’t easy. He won’t listen to his body and just take a rest. He’s also not very good at asking for help and tends to struggle on. Maybe I’m not taking enough notice of his needs, but I don’t want him to feel like I’m undermining him. I know he hates the fact he feels useless and I wouldn’t want him thinking I feel he’s a burden; he’s really not.

Trying to remain upbeat and positive is becoming more of a struggle each day, I need to remain positive for my children and my husband. I don’t want to snap because at the moment I’m holding us all together.

Thanks for reading.

-x-

2

Hi hun.

Oh I do feel for you and your family.

I often think it must be harder for a man than a woman to accept and come to terms with a diagnosis, such as MS.

Traditionally the man is the provider, the protector, the bread earner.

Some men just cant see their role as anything but that.

You are obviously doing the best you can in a very difficult, and yes, scary too, time.

This forum is a place where you can let off steam and receive advice and support.

Having said that, I do find this particular board is quieter than the rest.

I imagine that`s because caring for someone with a serious condition is so tiring and when there are children to look after as well, carers grab their rest when they can.

It can often be difficult to braoah the subject of a person`s moods.

Does your hubby have an MS nurse? Perhaps you or he could ring her and see if she has any advice.

Sorry I cant offer anything better.

luv Pollx

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3

Hello Bluepixie

I reckon sometimes it’s at least as hard, if not harder to be the partner of someone diagnosed with MS. Whatever you do or say, it’s them that has to live with it and men in particular don’t always understand that while it seems like a life sentence for the person with MS (PWMS), it’s just as difficult for you and your children. All of you now have lives that will always be blighted by this damned disease. Sorry if that temporarily makes you feel worse. But somehow you need to get that message through to him as well.

I have RRMS, and to be honest, I’m glad I didn’t have children when that was an option. That’s not the case for you and him, so I would imagine his main priority is (or do I mean should be?) how to be as fit and healthy for as long as possible so he can continue to be the man you fell for and married, and the father he needs to be to his kids.

In order for him to stay fit and healthy, he really needs two things to get sorted. The first is a drug therapy that suits him and your lifestyle. The second is a physio / fitness regime to maintain what he’s got now, and even improve his physical condition. I know it’s hard, but the impetus for both of those really has to come from him. The reason is that when a wife tells her husband he needs to do X and he should do Y, he’ll quite often get pis*ed off at being told what to do. Or as you put it, feel that he’s being undermined by you. There are a bunch of free publications from the MS Trust that you could get hold of and pass on to him if he’s someone who will read up on stuff. Obviously they are things that you could be reading too. In fact, he may see you reading a booklet and himself ask to read it. Have a look at their website: Shop - MS Trust

Of course you need to pick and choose which publications you want to read, it’ll do you no good to get them all; start with say, something for newly diagnosed, something on fatigue, disease modifying drugs (DMDs) and maybe something on physical exercise or the role of physiotherapy.

I do hope you and your husband start to talk about this crappy disease that’s landed on your family. And believe me, it has landed on all of you, and it will probably take all of you to come to terms with it, and figure out how to fight it together as a family. Communication is your first hurdle. Men are notoriously bad at that so it’s going to take some delicate touches from you to get him to open up.

If he’s not already a reader / poster on the newly diagnosed and / or the everyday living boards on this forum, then see if you can suggest he joins us. We’ll be happy to try to answer any questions, problems, quandaries and thoughts that either of you has. As Poll says the everyday living board has the most traffic so don’t feel that you have to stick to this one.

Good luck

Sue

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4

Thank you both for your kind replies.

He does have an MS nurse, he needs to ring her soon as he’s having another relapse. He’s suffering with blurry vision which is really bugging him. He’s also been given some steroids to try and bring it under control, but then he can’t sleep at night. I’ve managed to convince him to take tomorrow off work so his body can have some R&R.

I will definitely have a look at those bits on the ms trust website. I’m sure they will have some very useful information. I’m hoping that he’ll be able to start his DMD very soon. He’s decided to go for tysabri.

Im hoping over the course of the next few weeks he’ll feel more comfortable talking to me about it all, but I will understand if he doesn’t want to.

I had another chat with the children today, tried to explain it all to them a little better. I think they got the gist of it, but it’s such a complex thing to try and explain.

Thank you

-x-

5

It is a tough situation for you all. You husband is lucky to have someone on his team who is trying and willing to support him emotionally.

I don’t know your husband and I don’t know you, so I can only offer a couple of observations from my own perspective as a person with MS and whose natural temperament inclines somewhat towards the black side of things.

Here are some of the things I did want and value, back in the distant days of being newly dx:

  • Having my real fear and distress accepted as valid without attempts to downplay them or argue them away.
  • Being told clear and straight adult-to-adult when that fear and distress was making me behave like an insufferable arse.
  • Being given space to find my way in the new world of MS by establishing virtual friendships on here and elsewhere with other people with MS - with it understood that that that special world and the thoughts and fears expressed there would be completely private.

I won’t bother listing the things I didn’t want because they are basically the opposite of the above.

No idea whether any of this strikes a chord. If you do nothing else, sit him down for a calm and grown-up discussion about how he manages his emotions in his dealings with the children. If he’s the man you married - and he is - then he will know perfectly well that, however much he is struggling, he needs to get a grip on that one.

I am sorry that life is so difficult at the moment.

Alison

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Bluepixie3,

Sorry to hear about your family health issues. MS affects the whole family which is both bad and good! Bad because it is a negative thing, good because no one individual has to shoulder the whole burden. In our household I am the miserable - stubborn uncommunicative bloke with MS. On the plus side I have had it for 25 years so even I have started to learn a bit about how we need to build a team to help deal with the issues. As a “bloke” I loathe the notion of needing help or feeling like I am a burden. As a person experienced in having MS I now understand that views / perceptions / goalposts will change. The quickest way to help him understand your position is to say “imagine how you might feel if the roles were reversed?”

I would not know how to help with the kids, but he will (in my experience) find it easier to accept help from family members without feeling too bad.

My suggested pearls of wisdom would be do stuff while you can - don’t wait for a rainy day. Enjoy the good stuff. Accept the bad stuff, whilst taking steps to use tools / facilities / services when appropriate. I have regrets about making myself and others struggle because I was too proud or stubborn to accept the circumstances. There is a very delicate line between giving in and being a martyr ( I still get it wrong after 1/4 century) but my wife and family lovingly help to steer me. I am getting better at accepting help and this makes life a lot easier for everyone.

I wish you and all of your family all the best Mick

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Alison, thank you for you honest reply. I have taken those things on board.

He’s joined a few groups on Facebook, one of which is private. He suggested I join too and I said that he should keep that private so that he has somewhere to escape to if he wants to. He can post what he likes on there and I can’t see it. If he wants to share it with me then he can but it’s entirely his choice then. He’s also a member on here.

I am so glad that there are many people he can talk to about ms. I’m sure the support and advice he will receive over time will do him the world of good, if not just to reassure him that he’s not alone.

I think it’s the not knowing what’s coming next is what is so difficult for all of us.

-x-

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Hey Bluepixie3,

Not knowing what is coming tends to lead to speculation which is generally bad or negative. Plans can be made with info, worries are set up by speculation (in my not so humble opinion) without sounding like some dodgy old hippy or young space cadet, I would suggest that you gather a good support team, arm yourself with knowledge & a consensus of opinions (no 2 cases or people are the same) and enjoy the good bits of each day properly and learn from the not so good bits.

I shall stop blathering now before I start listening to my own twoddle.

All the best Mick

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9

Hi Pixie,

I agree 100% with all these posts. There’s a lot of wisdom out there. And it’s from highly experienced, sensitive members* who are only to happy to read what you have to say and you’ll get answers from many different perspectives. It’s a gold mine with very deep and rich veins.

Pixie, grab a pickaxe and help yourself.

And it’s available all day, every day, including Christmas and New Year’s Day.

Yours, Anthony

*Which a lot more than you can say for some members of the medical profession!

P.S. We named our cat Pixie.

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