Scared caregiver of husband with MS

[buddyloki]

I am a caregiver to my husband who has MS. I was 5 months pregnant when he was diagnosed with MS and we now have a beautiful baby girl.

I am scared to death of the disease, and worried that someday, he will not be able to be active with his daughter and live life the way he wants to live it. I try not to think ahead and into the future, but it is so hard to do sometimes.

I lay in bed and night and question why this could happen to him, he is such an amazing person. I worry for my daughter, even though the neurologist says that her chances of getting this are not much greater than the average person.

I worry every day that he is going to have a new relapse, that he will develop new lesions. He does not want anyone in the family to know, so I am kind of dealing with this all on my own.

Any tips on coping would greatly help me! Or positive stories about your loved ones with MS.

[tommylee]

Try to remember worry serves no purpose.

For what it is worth; I was Dx when our son was 2.
He is now 15 and I am still much more active with him than many "healthy dads" are with their own children.

MS has changed my life but not all of it has been for the worse.
If you can just remember that you and your husband are a team.

He may be the one who feels like crap all the time, You are the one stuck with a husband that is in a chronic condition.
Its not easy for either of you?
If you can stick together and fight together your lives should still be great.
Perhaps not what you pictured but still worth the time and effort.

The Dx is still new and you just had a baby???
It sounds normal to be a little stressed and freeked out.
See a Dr or a therapist or your Rev/Rabi/Guru or read a few books or what ever you think may help you.
Understand this is something to deal with and deal with it.

Feel free to ask any questians you want here.
You should get a few good answers.

Hope you feel better soon. Enjoy that baby you never get a second chance.


(Dx in 98' and still pretty sure I could beat my wife in a foot race.) Life dosent have to suck. You can handle this.

[sengelhardt]

Try not to worry.. (yeah - right - like THATS gonna happen! LOL) Its ok to feel this way. Its ok to be sad, angry, frusterated, pissed off,... whatever you're feeling, is perfectly normal. MS has just 'stolen' your 'perfect' life.

I was dx 7 months ago, the day after we bought our house (with 5 sets of stairs~ ) I just turned 32, am a mom to 5 boys, I work, am married, go to school, volunteer at our church, and care for my grandmother who is 84. Believe me, I went through all those feelings.. still do on occasion. It sucks, plain and simple.

I can understand why he doesn't want the family to know, can you imagine your entire family questioning him and how HE is going to provide for his family now that he has MS? How HE is going to take care of your daughter? Then it all gets turned on you.. how are you going to manage with him having MS? Are you going to be ready to care for him and your daughter? Believe me, once the family knows.. life just gets more stressful. And with a new baby, I would most definately wait.. sheesh I think back to when my boys were first born - all the questions and 'advice' - even from my cousins who didn't have any kids! Family can wait to know... he was just diagnosed, there is plenty of time.

So you are right in feeling let down and scared. Your husband is facing a life of unknown disability, pain, stress, medication, etc. Your facing the same things, but in a different sense. The outlook is good though, there are plenty of treatment options, so he stands a great chance of being just as active 20 years from now as he is today. I know I completely changed my life and outlook when I found out.

I am 37lbs lighter, can curl 20lb weights with no problem, and plan on running a 5k in the spring. Quite a bit different from my life 7 months ago. My husband is my most wonderful supporter. He checks me to make sure I take my meds, he runs interference for me with our boys while I am doing school work at home, he even helped me wash my hair when I had the IV stuck in my arm during my steroid infusions a few months back.

My suggestion is to grieve as much as you need to for now. Once you get that out of your system, focus on what needs to be done. Enjoy your daughter now - they grow up too fast. Enjoy your husband now, don't let MS be all you see. He is much more than MS, he is still the man you fell in love with and married.

[aitch10]

This is all really new for you and your family and it's totally normal to be scared. My only advice is to make sure that your relationship with your husband stays strong and healthy, that you communicate well - both how he's feeling and what your concerns are - and that you prepare financially.

Good luck and take care.

[zolar16]

I am new to this site, but I saw your post and I had to respond. I was in the same situation 2 years ago. My husband had what we now realize was his first relapse in Jan. 2008. In August 2009, I was 8 months pregnant and I had been nagging my husband to get a follow-up MRI done, as his neurologist recommended. The results we'd been dreading came back, and we were both very scared and sad. When he finally got his first dose of Avonex at the end of September, we had tears in our eyes as he tried several times to give himself the shot, but couldn't bring himself to do it. Every weekend, I gave him his injection and then cared for our son and my husband as best as I could while he coped with the side effects. He became very depressed because of the side effects, his everyday symptoms, and the fear that he wouldn't be able to care for us one day.

Two years later, we are still working on dealing with MS, but we have come a long way. He is doing really well physically and has had only one major relapse since his diagnosis. He was nervous about telling friends and family as well, and they were very understandably upset when he broke the news. However, everyone's been very supportive and we haven't had any strong reactions from anyone. We are both trying to improve our diets and exercise more. He wants to prevent future relapses as much as he can, and I'm making sure I have enough energy to take care of things when he's not feeling well. He was on SSRIs for several months, which really helped his mood.

Here's my advice:
- If your DH is showing classic signs of depression (don't forget, anger is a common symptom in men, and was my DH's biggest symptom), ask him to please talk to his doctor about it. Tell him you love him, you want him to be happy and you want him to enjoy being a new parent.
- Take care of yourself! You can't care for your baby and your DH without making sure you're eating well, sleeping well and taking time to relax. Let the housework go, make lots of crock pot dinners, and enjoy being a family. If I take some time for myself during the day (usually during DS's naptime), I am in a better mood when DH gets home from work, I don't mind making dinner, and I'm able to give DH some time to put his feet up and rest.
- Find some support. The forums are a great place to start. If you need help around the house, ask your family and friends if they can give you a hand with the baby. MS never has to come up, and you can get a break.
- Make sure you and DH are having date nights or time alone on a regular basis. It doesn't have to be anything fancy; we usually just watch a movie on Netflix or order take out after our son has gone to bed. We both started to drift apart due to the stress at first, and making time to be together helped fix that.
- My DH had a kind of "coming out" during MS Awareness Month. He posted about it on Facebook to let everyone know what was going on. He liked it because he had time to work up to acknowledging what's going on. Maybe that would be an option for your DH (obviously letting close family/friends know before that).

Good luck! This is a really scary time, but you can get through it.