Denial/Depression?

[rikihalo]

First of all, just knowing this forum exists has made me feel less alone in dealing with my dh's MS. Thank you for being here!

My husband was dx'd over a decade ago, but was on Avonex for only a month before deciding he hated the meds and would "go it alone". Early on, he led to me to believe this was a choice that his doctors supported, but it recently came to light that he simply stopped going to the doctor 11 years ago.

Last New Years', he had a massive flare up that took much of the use of his left leg and his standing balance. It took me nearly 2 months to convince him to go to the doctor, and another month for him to accept that he needed to be on medication and make changes to his diet.

He's been on Copaxone since April, but he hates the daily injections--I have to give them to him. He has a stressful sales job, but hasn't looked for anything else or asked for accommodation to move to something less stressful in the company. He was supposed to get another MRI series done 2 months ago, but he's dragged his feet on getting it scheduled. And, he won't talk about how he's feeling, physically or otherwise.

I'm worried that his method of dealing with the situation is to ignore it and hope it goes away. Early in our relationship, I told him I couldn't carry the burden of his MS alone, and needed him to be proactive in managing his care for as long as he possibly could.

We've been married for less than 2 years, but with the nagging and the reminders and the injections, I'm feeling more like his mom than his wife. I adore my husband, and I know this is only the beginning of a long journey together. Any suggestions on getting dh help in coping/engaging him on his own care?

[SNOOPY]

but with the nagging and the reminders and the injections, I'm feeling more like his mom than his wife.

Then stop acting like his mother and be his wife

Your husband does sound like many men, including my husband --- not wanting to discuss health issues/concerns, not wanting to have regular check-ups/physicals and putting off those check-ups/physicals. Having said that, my husband is not the one with MS, I am.

I cannot fault your husband, I do not have regular MRIs (1985, 2005, 2011), I do not nor have I ever used one of the MS treatments and I am very irregular about seeing my Neurologist.

I understand your fear, I know my husband has concerns but they are more about this disease and what it can do than my stand on the treatments. He does accept and understand why I have choosen not to use any of the MS treatments and accepts how I choose to treat or not treat this disease.

It is recommended the person with MS start treatment ASAP and most neuros will suggest the patient use one of the treatments. However, a patient has the right to refuse medications. My neuro respects my decison but we discuss MS treatments at about every visit.

It might be helpful to you if you saw a therapist, someone you could talk to and work through your feelings about the disease, fear, your husband and any other concerns. This disease not only affects your husband but it affects you too

[Seasha]

I thought long and hard about your situation, but I have to agree with snoopy.

However I do feel your frustration and concern. (btw, I have MS, not my husband) But, my dh is stubborn to a T, & thankfully he is in pretty good health...a tad bit overweight and watching his bp and cholesterol. He hates to talk about his physical problems whenever they crop up. I figure it's his body - after 16 yrs of marriage, the only thing I can be proactive about is his diet. I am the cook! So, that's one way you can be proactive.

And continue to give him his shots. If he is willing, then good for him! If you stop the nagging and reminders, maybe things will ease up on you. It's like the old adage - "you can lead a horse to water....".

Maybe this advise is not what you want to hear. But IMHO, that's what I'd do. Like Snoopy says, this disease affects families too, And again, therapy is a great idea, so please don't forget to take care of you!!!

[Sequoia]

I agree with Snoopy and Seasha too.

I'm the one with MS in my marriage, but my husband has some serious health issues and could be doing more to help himself than he is. Although it goes very much against the grain, I leave him alone on the subject. The one thing I can do, I do...and that's cooking healthy meals as often as I'm able.

Do what you can--the shots and the cooking--and leave the rest to your husband and your Higher Power (whatever that may be).

Co-Dependants Anonymous can be an invaluable help in developing a mindset that will serve you well as you live with a (sometimes uncooperative) person with MS.

http://www.coda.org/tools4recovery/index.php

I wish you--and your husband--well!

[bsymom]

My husband was dx in 2003, after 18 months of testing. We were new to the MS scene so we took the dr's "advice" and he began on Avonex. He felt worse. Then he tried Copaxone. Same results. He's been off his meds for 2 1/2 years and recently had a relapse (numbness & "hug"). He hasn't seen a neuro in all that time, and with the new symptoms, he's had no choice. We went for our first visit yesterday and instantly the dr wanted him back on the meds. He lived a better, higher quality of life OFF the meds. He has no desire to go back on them. I fully support his decision. As a matter of fact, I was so upset with this dr for looking at my husband with such disgust for being off the meds that I told my husband "let's go, we're leaving". It his body and his decision. Since he's happier, I'm happier. Being off the meds doesn't mean it "caused" the relapse and there's no way to know if being on them would have prevented the relapse. I do know we have a friend who's been on them for 15 years and they haven't stopped his progression. They have caused more complications, at times.

My best advice...simply be supportive. It's what your husband needs more than anything...even the meds!

[Iceskater]

"My husband was dx'd over a decade ago, but was on Avonex for only a month before deciding he hated the meds and would "go it alone".

My husband has MS too.... he was dignosed this past year and is currently taking Copaxone. My husband hates taking his meds and I hate ordering the medication. It's a love hate relationship.... but helps him. I also understand why he wouldnt want to take his medication. But he has to realize that this medication is not only about him. It's about the quality of life that he will have because of it. I also know he has right to self determination and his choice is ultimately his choice.

Another idea would be for him to find a doctor that he likes and can trust. My husband refused to go to the doctor because he believed that he could "heal himself". We went to a chinese herablist, accupuncture, chriopractor etc....

Another tactic would just be to actively listen to why and the reasons behind the refusal of medical care. Sometimes just listening and understanding can go a long way. Another thing would to be proactive....
I make all of my husband's appointments for everything ... dealing with his MS even medication.
MS is not just about your husband but it's about you too.... Dont ever let it hold you or your husband back .....

[Jules A]

I'm just kind of surprised that if he has had MS for 10 years this is only coming to light now?

MS has the potential to be such a miserable disease it makes me sad to read that couples haven't worked this out long before getting married sort of like your stance on religion, childbirth, spending habits etc.

Counseling would definitely help you even if he refused to attend. Good luck.

[rikihalo]

Let me clarify...

... that my issue is not with his declining treatment for so many years. It is with his recent decision to accept treatment, but an ongoing lack of commitment to the treatment plan he chose.

If he decided to forgo treatment, and see doctors occasionally, I'd be his biggest cheerleader. If he decided he wanted to go toe-to-toe with his MS and throw everything we've got at it (medical, alternative therapies, diet, you name it), I'm his right-hand gal.

But making a decision to treat, but then not engaging on the day-to-day commitment that treatment requires puts the burden on others to help him fulfill his treatment plan. It's the apathy, the "I just want this all to go away" commentary, the ignoring of his symptoms, the need for reminders every night to get the Copax out of the fridge. When asked if he wants to change his mind about treatment, he says "no", but then refuses to schedule any of his appointments himself or order refills on his meds.

And hey, thanks for telling me I need help. Why do you think I'm HERE? I have been talking someone, who suggested that the best way for me to learn how to cope with, support and improve dh's experience with his MS would be to find a group of people facing the same challenges.

[Jules A]

[QUOTE=rikihalo;1313559hey, thanks for telling me I need help. Why do you think I'm HERE? I have been talking someone, who suggested that the best way for me to learn how to cope with, support and improve dh's experience with his MS would be to find a group of people facing the same challenges.[/QUOTE]

Hope you didn't take that personally we all need help thanks to MS.

While the experiences of others going through similar situations can be of value so can a professional who is privvy to all sides and has a clinical background in assisting people. So while message boards can be very helpful they aren't the "best way to learn" imo.

Its all good in the big picture. Glad you joined us and I look forward to reading more from you.

[Spydre]

I can understand the boat you are in. I'm the one with MS, my husband has some issues of his own. He's decided to deal with his issues on his own. When I was on Avonex, I couldn't do the injections, my husband had to inject me. And he HATED it. He hated the thought of hurting me, but he did it.

Then I got put on Copaxone. I did the injections on my own, thanks to little autoject thing, I didn't have to see needle. Yes, I occasionally forgot. I generally got a week's worth at a time out of the fridge, but if I forgot, it was on me. I'd just have to make sure I stayed up later until it warmed up (30 minutes will do it, and hubby made sure I took it). Despite his own lack of treatment for his own issues, he is very - demanding when it comes to my treatment, because he's terrified of what would happen if I don't medicate. With good reason, for me.

I never even thought about the possibility of not treating the MS, both with DMD's and for the symptoms. I was initially having flares every six months, and it would take almost a full six months to regain what I lost, and then I'd flare and it would be gone again, only worse.

If he doesn't want to treat with DMD's, it's his decision, but at least try to make sure he follows up with his doctor regularly - but as the wife of someone who I have to tell to take something for his headache, I know what a chore this can be. Many of us have love/hate relationships with our DMD's. When I was on Avonex, it wasn't effective for me, so I know what life will be like if I go off treatment. Some people are able to manage without it. But don't be his mother. If he wants you to do his shots, fine, but he needs to be responsible about them.

I wish you luck.

[kelm10]

My/our side

I am the one with MS. On the general I take my medication most routinely. An occasional I forget but not to often.

I truely believe in taking medication for my self and other MS ers. But, I also support the educted decision to not to take medications. But, I also believe that a whole hearted attempt to take the medications should be made, also. But, that is my opinion. There are so many of the DMD. And just because you did not do well on Avonex (or what ever interfereon) doesnt mean that you can not take another. Or, if you don't want to do shots there is Gylena now and more orals on the horizen. The numbers show that medications really do better.

I am progressing even on the shots, but still take the shots. I don't want to fathom where I might be without the shots.

Now about relationship for me. My dh has High Blood Pressure, probably diabetes, and COPD (but very mild) and probably depression that hopefully he will mention next time at docs, or I will if he invites me to the appointment. I only go to doc appointment if he invites me. (disclaimer: I am a nurse.)

My statement regarding dh and his lack of treatment. I told him the marriage contract is in sickness and health. I don't do sickness if he does not do health. He chooses to not treat his COPD right now. (I don't like it.) If he is wheezing or excessive coughing that is disturbing my sleep I strongly suggest he leave the bedroom to sleep. He keeps talking about not taking his B/P meds. I told him if he does not, I will not care for him when he has a stroke. End of discussion. To easy to treat with little side effects.

He is just as stubborn about other health items, like someone else said. Says he has a headache. Have you taken anything or done anything about it (like quiet environment) if not be quiet about it utnil you do.

He grumbles about what I say. Tought luck you knew how it was when we got married. He also complains about my healthy cooking. But, sorry, if I am cooking then I am cooking healthy. You want to eat unhealthy cook yourself (that never happens.)

I agree with some of the others. Don't be a mother. He is big enough boy to give and monitor his own shots. But, if you want to do it that is fine, but don't be naggy about it. Make the rules and stick with it.

Good luck.