Need advice... what would you do?

[bsymom24]

I don't know how much longer I can keep it together. Together my husband and I have 4 kids (21, 18, 16, 13), 2 (2 & 5 wks) grandkids. He's 42, I'm 40. He was dx in 2003 (onset 2001). Physically he's been up and down until the last 3 years when his limbs went numb and he experienced the MS Hug. He has trouble walking, dragging his left leg often. He uses a cane outside the house. BUT he has refused PT. Says it won't help. His doctor suggested he see a mental health specialist (and so have I). He won't make the appointment.

My 16 YO suggested I call for him, but I'm at the point where, really? I do everything else. Take care of the bills shopping, cooking, kids, etc. I have to take him to his dr's appts because he either won't tell them everything or forgets things he needs to tell them or things they have told him.

He complains every time he moves. I do understand he's uncomfortable, but to hear him curse with every step is hard not only for me, but the 2 kids I still have at home.

And then there's the personal hygiene... He'll change his clothes every 2-3 days and shower every 3-5. He has a stool for the shower. Sometimes he brushes his teeth before he leaves the house. I can't sleep in the bed anymore. He tosses and turns all night and I was used to that, but when he rolls over and breathes in my face... YIKES! I thought something crawled in there to do its business one night!

We don't really communicate or interact like a married couple at all. He rarely sees the two older girls or the grandkids, but never asks about them. I see them 2-3 times a week.

And I can't talk to him abut any of these things, because he instantly gets defensive.

I'm frustrated, tired, emotionally exhausted.

[Jules A]

Hi and welcome,
Wow you are so young! I hate this miserable thief of a disease. This won't be the most popular answer but even as someone with MS I don't think it gives us a free pass to drag our loved ones down the drain with us.

Personally I wouldn't want to live like that and would likely insist on individual and couples counseling or one of us would need to leave.

Wishing you and your family better times ahead.

[loopey]

I agree. He needs to make some effort too. If not you have to take care of yourself.

[bsymom24]

Thank you. I've even suggested he try going on sites like this and talk to other people who have MS, but he refuses.

[Seasha]

I'm frustrated, tired, emotionally exhausted.

I would be too, bsymom! I'm so sorry. If he won't seek any kind of help, namely counseling, I would suggest that you do. Also, we have a Chat time here for Caregivers - Wed. 8pm (EST). It might help you to talk with others who are in similar situations and you might gleam some insight and suggestions from others.

I hope you give it a try! In the meantime, hang in there. You have my respect for trying to help him. Take care

[Dale76]

Sorry but I can't totally agree with the other responses. It sounds to me like your husband is actually in worse shape then you think, he isn't doing anything because he isn't able too... Clearly communication is not his stength but then again this desease does that! Sorry but I can relate to some of the things you are describing about your husband and I would say you BOTH need the consuling. I should mention I don't have issues with hygiene myself but perhapes it is so hard for your husband to bath himself that he is avoiding it, he may need help but is too embarrassed to ask for it....

In regards to sleeping, I sleep separate from my wife now due to my symptoms disturbing her too much. Sleeping in my own bed has made a big difference to my sleep too, you should consider it for both of you.

I too refuse to see a PT, I have tried 3 different ones and each time it dramatically increased my pain levels. My muscles get enough of a workout from my daily routine, they need rest to regenerate not more exercise.... Still if he has never tried it he probably should , everyone is different and it does help some.

[bsymom24]

Dale, I can assure you, he's not in worse shape than I think. He can, he just won't. He's capable of walking out to the backyard (we live on the 3rd floor) to get high, which is the most exercise he gets twice a day. He's capable of getting in the car to go and visit his one friend (because he won't bother with anyone else) who lives 30 minutes away, so he can get high with him. I've asked him to simply go for a ride, just sit in the car while I run into the post office, but he refuses.

We've had the discussion about his personal hygiene before. I just can't find in me to tell him every day "You need to take a shower." when he knows he needs to. Every time I do, he behaves as though he's disgusted that I mentioned it.

When he first went numb, he couldn't stand well on his own and insisted I hold him up in the shower. I'm 5-2 and weighed about 130 lbs. He's 5-8 and about 160 lbs. I simply didn't see it turning out well for either of us. Especially with glass shower doors. That's when I bought the stool.

I know MS is a constant battle. It's hard when I feel like I'm the only one trying to fight for him when he's not fighting for himself.

[Mamabug]

Your husband sounds depressed.

If he is allowing you to accompany him on Dr appts, perhaps he would be willing to take an AD med if you would discuss his depression symptoms with his Dr.

Also, please continue to encourage him to go see a PT and try their exercises for two weeks. I had noticeable results in 4 days.

Please update us.

Perhaps you will need to ((hold his hand)) by doing PT exercises with him, filling his Rx, and setting his meds out during meal time.

Be supportive/ No lectures.

Best wishes.

~ Faith

[Cat Mom]

Is he just being passive-aggressive with the showering? Not showering on purpose just because you're asking/telling him to? If at all humanly possible, try to not remind him of the shower and see if he starts on his own.

I gotta say, showering does take major energy. I'm completely mobile but standing in the shower makes me so dizzy that for the past almost 9 years, I have to dump my head over the tub to wash hair then climb in the tub to wash myself. Plus I have curly hair which is high maintenance to style, but that's my own modesty creeping in.

Hygiene (or lack thereof) is a drop dead deal breaker for me. Even if I have zero energy to shower, a "bird bath" will be had.

I wish you luck, please keep us posted.
Jen

[bsymom24]

Thank you, everyone, for your kind words.

Here's a little "back story". When he had his first onset in 2001 and was DX in 2003, he started in a complete downward spiral. Total crash and burn. He turned to booze and drugs. Didn't shower then either, but that was because he would come home from work (late) already too messed up to function. He'd continue to drink and drug until he passed out and usually wet himself on the sofa or in the bed. I know it didn't have anything to do with MS, since now that's he's mostly sober, he doesn't do that anymore. He was simply so inebriated that he was unconscious, as opposed to simply being asleep. He threatened suicide. It was awful. He had violent outburst. He didn't hurt anyone physically, but the mental and emotional damage, well, you can imagine.

He came home late one night, stumbled through the door, beer in his hand. I told him that it had to stop. He threw the beer against the wall, covering me and the kitchen.

I fought all of this, trying to talk to him, for over a year (after the beer incident). He was too messed up at the end of the day and when I broached the subject in the morning, before he had a chance to start on the drugs or alcohol, he'd start a fight and tell me it was too early in the morning to talk about "crap".

We separated, divorced, and he was pretty mean... claimed I "tricked" him into adopted my daughters (3 from my 1st marriage), which was awful. For one, it was his idea. And, more importantly, he said some of these things in front of my girls (he had been their Dad for over 7 yrs). Said he should only have to take care of "his" son, since he was the only one who was his blood. I know a lot of that was my in-laws talking in his ear, but the words still came out of his mouth. And, yes, most of the time, he was not sober.

In any case, he's basically sober now. He has his weed, and a couple of beers now and then. When we decided to give this another try, we, of course, made promises. He wanted to remarry, I was against it. In reality, if it didn't work out, I didn't want to go through what we had gone through the first time. So, the deal was, we would get married, if he promised me that no matter what happened, he was going to fight for this... In other words, don't give in to MS, fight it. He swore he'd never let any of that happen again... and then the numbness and "hug" 5 months after we remarried and, no, it's not the same. But in many ways it is.

Sorry, such a long rant... I have made an appt. for myself with a therapist.

[Mamabug]

Thinking of you, bsymom. A therapist for yourself could be a good idea. Good for you, for being proactive.

If these behaviors were new for your husband, I still wonder about depression for him. Perhaps your therapist can give you some strategies.

~ Faith

[bsymom24]

Thinking of you, bsymom. A therapist for yourself could be a good idea. Good for you, for being proactive.

If these behaviors were new for your husband, I still wonder about depression for him. Perhaps your therapist can give you some strategies.

~ Faith

That's what I'm hoping for. I simply feel so drained most days. Friends tell me I'm not depressed, just unhappy. But there are days, like today, where I would rather spend it sleeping. Only, I know I can't. I've just started a 3AM-11 AM shift and if I sleep my day away, I'll never be up for work.

[lorib]

It's incredibly hard to be in a relationship when the two people see things so differently! I think it will be wonderful for you to talk to a therapist. He/she will be able to see things from a clear perspective and help you to deal with everything you are going through.

I'm not sure what's going on with your husband. Maybe he has given up and needs an antidepressant. I'd talk to his doctor about that. I wish you the best!!