Forum

Is enough's enough, or just MS?

My husband was diagnosed in Jan 2006, and we have 2 children aged 7 and 4. He's currently in hospital - he had his steroids for what they thought was a relapse (although they now think he has gone progressive) and to treat a chest infection. He's now waiting a bed at the rehabilitation hospital.

He has changed (since 2006) from a mild-mannered person, to someone who is verbally aggressive and at times physically aggressive. He grabs my wrists and twists, and in hospital grabbed my leg (not proud to say I have to resort to hitting him to get him off - the kids saw everything). He's convinced I'm having an affair, or that I am doing things I'm not telling him.

He's been in hospital now for 5 weeks, and will be at the rehabilitation unit probably for another 4 weeks. What I can't find the answer to is whether his aggression is down to the MS? Or whether there may be another reason. I'm struggling to cope with it, and do not want my children witnessing it. I've spoken to my husband and he will blame everything and anything - his drugs, that he felt he was falling out of the chair, you name it.

He is doubly incontinent, cannot load bear through his legs, and requires help washing, eating, dressing etc. These things I can just about cope with - but not being physically hurt, or his continued shouting at me to get out of his house, or questioning about an alleged affair.

Please can someone advise, as I'm about ready to throw in the towel

1 Like

Hi

I am not a carer as you are I have MS, however I was a nurse for 20 years and in that time I cared for people with MS and I am also the child of someone who had MS. I have seen this behaviour in both patients and my own father and I live in fear that I may behave like this one day.

However much you love your husband and however much pain and suffering he is in you do NOT deserve this treatment. I am not saying leave him(I do not know enough to say things such as this)BUT what I am saying is get help for you both go to your GP and tell them what is happening, ask for help.Your husband sounds angry,resentful,sacred and afraid, he needs help to work through these feelings and so do you.

Good Luck

DL

My goodness. You must be exhausted. When are you taking time to look after ourself in all this? I’m sure you haven’t got time to fit in an affair even if you wanted to!

My husband was diagnosed 10 years ago and I too have seen him change from the person he used to be. My kids were 9 and 5 then. From our experience there are certain drugs which made my husband paranoid. Steroids were particularly bad, especially IV. I would see a wild look appear in his eyes and spend days treading on eggshells and keeping the kids out of his way. He’d accuse me of all sorts of things so I decided to stop trying to justify myself or convince him he was wrong because we’d end up having huge arguments which I could never win. I would calmly state that he was wrong and left him to mull things over. This was easier for me to cope with and gradually he did start to see that it was him who had the problem.

Also though, his MS has affected his cognition. He sometimes doesn’t understand what’s going on, especially if the kids are talking quickly or there are more than 2 or 3 people having a conversation. In these situations he gets frustrated which comes out as anger and he will shout at me or the kids, or he just withdraws. However he does now realise that it is him and if he does throw a wobbly I now tell him he’s over reacting and that I need to explain the situation calmly!! This is a cue to him which we agreed.

My husband is just about load bearing and has problems with continence. He’s been in and out of hospital with urine infections and bladder stones. It’s very tiring to live with all this. I now sleep in my older daughters room when she’s away. I didn’t realise how exhausted I was until I started suffering from panic attacks a few months ago. After a few counselling sessions and a relaxation course I now try to give myself a break and remind myself that I’m not actually superwoman!! Have you considered having some counselling support? Do you belong to a local carers group? I went to one last year and everyone was over 80!! So not a lot of help, but I have got another one to try. I’ve just got to pluck up the courage to go.

You definitely must not put up with any abuse, but you might need help to find a way forward, so i agree with ‘dragonlady’ - go and see your gp.

Good luck and God bless.

Just had an evening of "battering by text". I don't have the energy to get into an argument with him so havn't replied (other than to one). He has told me tonight he is discharging himself, that I need to collect him in the morning (that's the one I replied to - I just said he could come home when the care he needs was arranged for home), and then that he would just get a taxi (how does a non-load-bearing man get in a taxi??)

I even had a run in with his dad today - I could tell hubby was working up to one of his "mania" episodes, and told his dad I wasn't looking forward to the visit. His dad said I needed to just not wind hubby up (!). I said it was very difficult when he behaves like that in front of our eldest (who's 7), and my dad-in-law said that wasn't the concern - the concern was not to upset hubby. My dear son is struggling to cope with all of this - he already has a counsellor at school and swings between "I hate dad" to "I want him home" in the blink of an eye. Is it right that MS should screw up not just hubbies life, and mine - but now seems to be destroying my happy go lucky young man.

I think I will try and talk to the GP, but he wasn't a lot of good when I talked to him before

So sorry to hear you are not getting the support you deserve, it is hard for anyone to face what you do without having to fight those who should be helping you with things. Maybe you need to talk to your hubbys family and explain things to them a little, I know how hard it would be for them to accept any fault in him (it was many years after my fathers death before my grandparents accepted and admitted how he had treated my Mum) but they may if you try, it is always worth giving people a chance. As for your GP is there another doctor at the practice you can try to talk to or if not give him at least another try or change doctors if all else fails. What people fail to understand is that the patient is only part of the equation.Thier career(s) are also important, without them everything falls apart. And more importantly you and your children are people who are entitled to lives and happieness too. And no it is not right that MS should screw up yours or your childrens lives. Keep looking for that help it is out there somewhere and if any of us here can offer any help even if it is only an ear to talk to please feel free.

         DL xXx

Hi Sje, so so sorry to read about your predicament, it must be so hard on you and your children. You can’t be expected to live like this you must talk to someone about it, as they others have said try your gp. Has your husband got an MS nurse she/ he might be able to help you. Your children must come first as they could end up with problems I know that sounds harsh but it is not their fault or yours that this horrible disease is affecting you all in this way. I don’t know what else to say keep strong and hopefully you will find some answers, I really hope your future becomes a bit brighter. Karen x

Oh love! This is an awful way to live. MS can be blamed for a lot of things.

But your OH`s violent behaviour can`t be allowed to continue.

In our house, I am the one who is cared for.

My hubby is my main carer and I have 3 others. One comes in every morning to get me up etc.

Another takes me out 2 days a week. The 3rd is holiday cover.

Do you think your OH would consider having outside help in? I use Direct Payments to pay for this. it did take 2/3 years to get my hubby to accept this. he now agrees it has saved our marriage!

Now I have often thought that it must be worse for the man in a relationship to be the poorly one. traditionally it is the man who is the provider, protector, the strong one. So when it happens the other way round, it must hit doubly hard. This is my opinion and may not refelct that of others.

So where does this leave you and your children?

I think you have to seek help. A good way to start is with your GP.

He/she will, hopefully, point you in the right direction for further help.

Don`t spend the rest of your life living like this. You all deserve so much more.

Let us know how it goes, yeh?

much luv, Pollx

hi 

you shouldnt have to put up with this abuse nor should the children.  ive been ill for a few years and have been difficult to live with but my partner tells me when i start to take out my illness on him.  it is hard to be ill all the time (my problems are mild compared to your husbands) but we have to consider how hard is it to be a carer too, unless you've been a carer you cant really understand how hard it is.   i would like to think that if i got to be as rude and aggressive as your husband my partner would tell me in no uncertain terms.   Maybe it is because hes ill that hes like that in which case your gp needs to help with that.

if he behaves the same way in public then it must be because of the illness????

please let us know how you get on and good luck.

mandy xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Mandy makes a very good point. If he behaves like this to you in front of othe adults, it’s the illness talking. If not, then it’s just him, I’m afraid. Maybe he thinks he has you trapped, and can behave how he likes, knowing that you won’t leave him. I think you have to set him straight on that.

Hi

You've already had quite a lot of pretty good advice from folk, but just a couple of things for me to add.

I've been a fll time carer for my wife who has MS for getting on for 20 years now and have also been quite heavily involved in the local MS community for even longer. MS can and does scramble the emotions - I've seen people laugh at the news of someones death - not being nasty but not realising that they had responded in a inappropriate way. MS also backs up a huge amount of frustration in people over the number of things now denied to them that not so long ago they could enjoy. Perhaps this could be at the heart of your husbands affair allegations ie his own sexual frustration and then imaging how you would cope with that.

All these frustrations could also reflect in his turning abusive towards you - you and he need to be really open with each other and talk about this. He needs to be aware that you will not accept abuse and why should you.

You are the only one who can decide where you will draw the line of what you are prepared to accept, but I suspect that you really want the marriage to survive and you must take a dep breath and be prepared to examine what your marriage is based on and if there is enough strength in the bond to persevere.

I hope that you resolve this in a way that brings the both of you to an understanding of each others wants and desires and that you are happy from here.

Hello,

As a carer of my wife, I can completely relate to your problem. 

One of the MS cognitive leaflets does touch on the subject but as it is relatively uncommon I think that the medics are unclear how to deal with it on a person to person basis.

My wife now suffers from SPMS and about 5-7 yrs ago she started behaving in a similar way to that which you describe. It's as if she had a personality transplant and it nearly destroyed our family. Everything is our fault of course. However, she had been in denial for circa 10 years. Eventually I wrote to her Neuro. about her condition. Frankly little was done except that she started to have stronger & stronger anti depressants (amitryptilene) and now she is permanently on a much larger daily dose and which appears to help from a number of perspectives too. I think that this condition is rare but not unheard of but it is very difficult to deal with and as a family we have suffered public outcries and physical abuse too. She has even come at me with a knife on occasions! We tend to forget that MS is a neurological complaint which can upset the chemistry in the brain and we tend to only relate to the physical effects that the condition deivers.

One thing that it is important to say is that the problem peaked and is now much more under contol, more tolerable and not so frequent but alas still there in the background. I think that for me I was strong enough and not as embarrased as some may be but it is understandable that people retaliate and things then get out of hand, especially when there are teenage children around.

I am sure that there is help somewhere but social services are stretched so it can be difficult to locate. However, you must keep trying to find your solution. Escapism is the easy solution.

Keep strong.

 

Well - he discharged himself even though carers were not in place and he was advised to stay another couple of nights. He came home last Wed. I went to bed, and he ranted for an hour about how bad a carer I was and how ill I was making him - then he threatened to strangle me (he has a lot of upper body strength). I got up and slept with my son. The next day I told him this wasn't working - it was best if me and the kids left. He ranted all day - so at bed time I said I would sleep with my son. He then shouted for over 2 hours - woke my son (ever had a 7 year old say "what's a sl*g?"). My son was hysterical - at midnight I rang his brother who tore him off a huge strip. The next day he's back to shouting - even after the carers put him to bed. I went in to ask him to calm down and he grabbed my wrist. I called the police - and by the time he arrived my son was also in tears as he had grabbed is wrist too. The police have reported it as domestic violence. He won't appreciate that his behaviour is wrong - I'm to blame for everything. I've told him that I am divorcing him - even that has not stopped him telling my son how bad I am, how what I'm doing is destroying the family etc.

I have nowhere to go and not a penny to my name - so he knows I have to stay until a divorce is finalised and the house is sold. I can't imagine how my kids are going to get through this.