Need some advice

For questions on how to support loved ones with MS.

Need some advice

Postby sadforhim » Sat May 26, 2012 9:16 am

My boyfriend was diagnosed with MS this past August.

We had only been living together since May 2011 before he found out, and we were together maybe 5 months before that. I am older than him, he is in his mid-20s, and I am in my early 40s. I kind of feel I have to share this because it's not so much his MS that's the problem...it's really him. But, I just don't know how much of his actions are just him or the MS making him "act out" or just that he's depressed. I feel terrible for numerous reasons.

I am not sure what to do about our current situation. He just signed a year lease, is on disability, and I work from home. We both pay half the rent, he pays electric, and I pay for the internet and our food. I've had to pay for other bills/things at times as needed. We both pay for our own cell phones, he pays for his truck. He was working until a week before he was diagnosed.

When he first was diagnosed, I said nothing about the future for about two months. I figured he needed to adjust to the news, but I don't think anyone ever truly does. I just kept doing everything, cleaning, etc. and didn't say anything about his personal habits.

Anytime I try to ease into a conversation now about the future or his habits, he usually tells me to shut the f*ck up and stop nagging him.

He plays video games all day, from the moment he wakes up until about 2-3am. Sometimes he might stop and go downstairs and watch tv. He has no desire to do anything at all. He rarely showers, or brushes his teeth. Sometimes I think this is due to his age at times, other days I think maybe it's the MS. There were times before diagnosis that he would not shower or brush his teeth. One of the few times he did talk to me about showering more, he said he can't stand that long in the shower, I offered to buy him a chair for the shower, he refused my offer.

Needless to say, we do not have sex, have not for some time. I just cannot bring myself to touch him when he won't take better care with his personal hygiene.

He doesn't help around the apt with cleaning or do anything for the most part. He says he can't stand and do the dishes, however, he will go outside to smoke (yes, he smokes and refuses stop) and crouches down in front of the door.

I know he feels horrible pretty much every day, and takes Betaseron every other day. He can't sleep - so he says that why he stays up playing video games. Even though I have offered to cook many times...he would rather just run out and get fast food. It's to the point where I stop suggested I'd cook something, because he won't try new things or eat healthier.

It just kills me to see him sit there wasting hours on video games, sleeping all day...doing nothing and just coasting through his life these days. I know there is a lot of fatigue involved with MS, and days you feel terrible. I just don't see him doing anything to help his situation at all.

He can't afford the physical therapy that was suggested, but his doctor suggested that he stretch at home or walk on a treadmill or just go outside and walk a little bit each day. He doesn't do this, just refuses. He also refuses to go to support meetings, or do anything really to find any sort of help with this. I had been researching sites for MS - grants, support, whether or not he could work again if he chose to, etc. But, it was a waste of my time, because he thinks any information I share with him is nagging as well.

I've been debating about leaving him, and I feel terrible about even thinking this. I just don't know what to do anymore and I know neither of us are happy these days. I also feel maybe I've enabled some of this behavior, but I probably thought I was being supportive by letting him just do what he wanted those first couple of months after his diagnosis.

Maybe I sound like a jerk for even saying that, and I'm sorry if I've offended anyone, was not my intention. I have really no one else to talk to about this. I've read plenty of stories online about peoples experiences - many were married for many years, just was unable to glean any sort of advice with this.

I do not want to hurt him, or leave him in a terrible situation. However, I feel that if we cannot work this out, that I cannot stay another year watching him play video games.
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Re: Need some advice

Postby NHE » Sat May 26, 2012 3:32 pm

From the little that you've written, it sounds like he's caught in a downward spiral of depression and his behavior is a form of escape. MS is tricky. It can cause depression and depression can also be a response to the diagnosis and the loss of physical abilities. In addition, smoking increases the progression of MS. It sounds like your boyfriend needs help. I wish you both the best as you work through this.
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Re: Need some advice

Postby lyndacarol » Sat May 26, 2012 3:39 pm

Your boyfriend's behavior is his choice; YOU cannot help him if he does not want to be helped. You cannot control his behavior. You are not a jerk for looking at the situation objectively. You are not the professional help that he needs. He will find his own way of dealing with MS. There is someone else out there in the world who needs and will accept your support and participation in his life. It is my opinion that you should move on with your life. All the best to you.
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Re: Need some advice

Postby Brenda123 » Sat May 26, 2012 3:41 pm

Wish I knew what to say.... I have had MS 10 yrs. now, an I still don't trust what I think!! :roll: :sad:
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Re: Need some advice

Postby sadforhim » Sat May 26, 2012 8:10 pm

Thank you for the responses, I appreciate them.

NHE - yes, he does need help. The ER doctor told him to quit smoking, but he's been smoking for years, extremely hard habit to break. His brother has mentioned to me that he may have had some sort of depression before even diagnosed. But I can see how MS would make anyone depressed. And the games - yes, an escape, just seems it's gone on almost too long.

Lyndacarol - Yes this is true, thank you for the reality in your post. I thought I'd be able to help and do what I can to be there, or give what he needs/wants, but I think you're right, I don't think he wants help right now.

Brenda123 - Thanks for just commenting.
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Re: Need some advice

Postby NHE » Sat May 26, 2012 8:35 pm

sadforhim wrote:NHE - yes, he does need help. The ER doctor told him to quit smoking, but he's been smoking for years, extremely hard habit to break.


It is an addiction (one to a poison). Treating it as anything less will likely not be successful. I have friend who told me that he had quit both heroin and nicotine and that nicotine was the more insidious of the two addictions.

His brother has mentioned to me that he may have had some sort of depression before even diagnosed. But I can see how MS would make anyone depressed. And the games - yes, an escape, just seems it's gone on almost too long.


The video games are likely an addiction as well in addition to being an escape. They stimulate the brain and make you feel as though you're doing something, but the reality is that you are doing next to nothing.


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Re: Need some advice

Postby Jimpsull » Sat Aug 03, 2013 10:43 pm

MS is tricky for relationships, but then relationships are tricky regardless. My wife and I had been married four years when I was diagnosed (2003). We had our share of struggles both before and after diagnosis, but we have struggled through most things together.

Before leaving him, you should level with him. Let him know that you're not afraid to face difficulties with him but that you don't feel like he is trying. A person with MS can choose to fight their illness and then face what limitations that come gracefully.

If he is interested in fighting it, electronic cigarettes helped my wife quit and I have heard many similar success stories. The Roy Swank diet kept most patients walking for 34 years, the duration of the study. Copaxone has fewer side effects than betaseron.

He sounds checked out. See if you can get him re-engaged. If he is unwilling to try, at least you tried.
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Re: Need some advice

Postby Choupinette » Mon Jun 30, 2014 8:04 am

Dear One,

I understand your frustration. But at this point, you're not helping him, you're enabling him.

You need to take care of yourself first, as a person, and as a caregiver if you so choose to be. That means to tell him: either he goes for therapy (he is obviously very depressed --- and who wouldn't be), or you will leave.

Also the way he treats you is not acceptable: to tell you to shut the f**k up is not acceptable. It is abusive. He is angry, OK, but doesn't have to take it on you, and needs to find a more skillful way to vent. Hence the therapist.

I would suggest to try to change just one thing at a time, to not overwhelm him and set you both up for failure. I would drop the smoking and the video games for the moment, but the attitude and the hygiene are not negotiable.

I wish you good luck. Please let us know how it's going. And remember to take care of yourself! You are a strong, lovable person and you deserve to be treated right.
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