How can I help him if he wont help himself?

[Rissa84]

Thanks in advance for listening .. its been a bit hard the past few days so a place to vent is nice. I have been married to my husband who has MS for 5 years now. Needless to say this has been a very eventful journey with his MS episodes. The problem is.. he is not taking care of himself. He doesnt take his meds.. has an attack.. goes to hospital.. gets steriod shots.. recovers.. and then feels fine and never does the follow up. No doctors appts, no medicine follow up ( insurance issues/ doctor approval issues).. and here I am having to deal with the worrying , stressing out , taking off work to be home and get him to the hospital, not sleeping ,, its really starting to take a toll on me. He is used to his mom calling and making his doctor appts, he never calls himself , doesnt want me to call,, I just feel like he doesnt want me to know what is going on and when I try to get involved, I just get angry because I find out he has not been taking care of himself and I refuse to baby him , he is an adult. We are both in our late 20's .

[Codex1554]

Originally Posted by Rissa84

The problem is.. he is not taking care of himself. He doesnt take his meds.. has an attack.. goes to hospital.. gets steriod shots.. recovers.. and then feels fine and never does the follow up.

Hi Rissa84 and welcome to MSWorld. As so often is said, we're glad you are here, but sad for the reason.

After reading your post I had to take a few deep breaths before responding because the situation you describe is one that hits very close to my heart--and it makes me incredibly angry. In my life it was my mother who had medical issues (not MS) yet would do nothing to get help or help herself. The irony of this is she was a registered nurse!!

For me personally, I was diagnosed in April 2012. I'm fortunate enough to have excellent insurance and my wife has been terrific support. I've been on Copaxone for about 3 weeks and "got religion" with regards to trying to do what's necessary to decrease the frequency and severity of the attacks.

But on to your question: "How can I help him if he won't help himself?" The answer is you can't, at least not directly. If you are content with this pattern of behavior continuing as it is without change then your post is a vent and that's one of the many reasons this board exists!

However, if you are looking to try to modify his behavior the effort starts with him. Only he can make the changes necessary to take care of himself. If he refuses to deal with it for whatever reason, the likelihood of you being able to change his behavior is minimal.

What I can suggest to you is to make sure you take care of yourself! This is so important I can't stress it enough. You love and care for this man yet he continues to behave in a self-destructive manner. Get counselling for yourself at the very least to help you deal with your own emotions. At some point your DH will either "get it" or he won't. But it's so important that you are strong for yourself when that juncture occurs.

Good luck! And, again, make sure you take care of yourself!

Codex

[TechDad]

Hey Rissa,

Your problem hits very close to home - however I am the stubborn MS stricken hubby in my situation. I can give you the reasons I am the way I am (and likely the way your husband is too) based on my personal experiences.

First the crux of the matter is we are guys, stupid macho don't want anyone's helps guys, and perhaps even stupid macho don't want anyone's helps guys who also do not want to be a burden or an embarrassment to our loved ones.

Second I also have no insurance coverage and I know full well that those worthless follow up appointments that can run upwards of $650 a pop just to hear "There is nothing we can really do but you can pay at the door for the time we wasted trying to pretend we can make you better, and thanks for making the next payment on my new BMW" add up fast.

Third and most important in my situation is that I am a pesimist - I strongly believe there is nothing a doctor/dietician/magician can do to help the long term situation and life will go on with or without their worthless input and medications (I am also physically past the "feel good about your future and take these $3k a month worth of meds that have been proven to be of no real help in treating or delaying any onset stage of MS). Even the US Government's own studies on quality of life vs cost show it is not worth the expenses but that is another rant for another day.

Fourth and also very likely is that men in general do not like Doctors - we are notorious as a gender for not getting checkups or even getting broken bones set (that is what duct tape is for, right?). We also do not ask for directions when lost - another macho bull-poop throw back to trying to be in control of ourselves and not rely on others. If we step on a nail we will get a tetnus shot but we do not expect a Doctor to come to our homes and clean up the yard.

I can assure you that your husband HATES having to put you through any of this - some of us will even become stand-offish and others become hands-offish out of loss of hope or acceptance of the situation. All we can think about is how can we "provide" (care, comfort, finances, love) to our wives and families when we feel broken, helpless and sometimes even like a worthless burden. If he is anything like I am I can assure you he loves everything you do for him (even with all the "nagging" but being of the male gender he may never admit it) - but might I suggest letting him know you understand a little bit of how he is feeling and just let him know that you will be there for him no matter what may come in the future. Not knowing what tomorrow brings and the loss of control over his destiny is a man's greatest fear.

[vixgirl]

Techdad, Thanks for that. Worth hearing/reading. B.

[skyeblue]

Good for me to hear too.

My husband has had PPMS for 17 years and is wheelchair bound -- though still able to transfer without assistance.

He will not go to the doctor anymore, will not let me check him for pressure sores, will not exercise his upper body. He isn't depressed, just says whatever will be will be. I think he knows the big stuff is over for him now and he's content to be on the computer or sit outside and look at the birds. Doesn't even want me to take him anywhere in the car.

thanks

[chocoholic1976]

My husband is quite similar. He doesn't let me have contact with his doctors or go to appointments. I have been to one in seven years. I have seen him become more controlling over so much in life maybe because he has no control over this disease. He might be reading this. Hi hon! At this point our marriage is not likely to last.

What I can say has helped me is...counseling (couples and individual), MS support groups (I go even if he doesn't.), this particular board, doing the MS bike ride (something positive relating to this disease) and other self help support groups and books. I know how frustrating it can be to see your DH not help himself. There's little we can do for them if they don't do the work themselves.
TechDad-Thanks for the honest, helpful post.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Cat Mom]

I am the MSer in my family and do go to the doc and take my meds so I can't relate but is husband having his mom do some of this stuff to ease your burden a bit? I feel badly for both of you, wish I had some encouraging words. I don't think you can help him if he doesn't want to help himself so make yourself your main priority. Hope things get better.
Jen