Need to get this off my chest

[julierooster]

I feel so guilty inside for feeling it. Husbands symptoms worsened, made him sad and scared. I was able to comfort him, but now I have that anxiety again. The "I'm not ready for this" anxiety. How can I feel that? He's not ready for it either, and what he has to deal with is way worse than what I have to do. Sometimes I don't know how to cope with it. I cry at work sometimes because I can't cry at home in front of him. I'm supposed to be strong for him. I love him so much and hate that he has to deal with this stuff. It breaks my heart to see him suffer and deal with the fear and anger and range of emotions that it brings on. I pray that God gives me strength to be there for him. Its hard.

[dalechilders51]

Julie I don't think you need to feel guilty about your emotions. Your husband is a lucky man to have you by his side. Caregivers have just as hard a time dealing with MS as the one affected. Be sure to take of yourself mentally and physically. Talk to someone. Be well Dale

[carlab68]

*hugs*

I guess from a caregiver perspective I'm glad I had experience before the MS diagnosis. My husband was diagnosed as mixed state bipolar as a child, so he has bouts where I had to care for him before. He was diagnosed on Thursday with MS. The caregiver has so many roles and we do have to be strong, but sometimes it's okay to cry with them. Then you just metaphorically dust yourself off and focus on what can be done to help. Keeping our loved ones positive is important for their recovery. Taking care of yourself is vital for all of you.

[hunterd]

Julie I don't think you need to feel guilty about your emotions. Your husband is a lucky man to have you by his side. Caregivers have just as hard a time dealing with MS as the one affected. Be sure to take of yourself mentally and physically. Talk to someone. Be well Dale

I couldn't have said it any better.

[Seasha]

Julie - thanks for reaching out and being there for your husband in this journey of yours as caregiver. It is tough!

I was just reading an article from my MS chapter newsletter of some other online help services you could go to.

One is caregiver.com. It has a map to click on to see what is offered in your state by way of support. Also a place where others offer articles and tips.

The other one is thefamilycaregiver.org which provides an online forum to post questions and talk to others in situations such as yours.

I hope these added resources can help you with the difficult tasks you face. Take care of yourself

[Cira]

I don't think you need to feel guilty about your emotions, either. MS affects everyone it touches, from those who have it, to caregivers, families & friends. What you're going through is real & your feelings and anxiety are valid...and I doubt that your husband would blame you at all for feeling that way. My hubby has had a hard time with my dx. Like anyone, he hates seeing those he loves suffer. I understand & respect his feelings & fears and don't want him to feel like he has to hide them from me. Likewise, I'm sure your husband doesn't expect you to be positive all the time. You're a team & you will get through this together.

[kif8skip]

I hear you

As a "caregiver" ( oh what wouldn't I give to just be a girlfriend again ) ..I hear your fear and have many of these same feelings myself ....

As his one and only support it has been very hard to bear the weight of the situation ...I am scared too julierooster...

I am going to look at those sites mention by Seasha...I am also going to attend a caregiver support group near me - I went about a year ago but was not ready for the dire circumstance I found there...

Hang in there and remember to take care of YOU too

[sgrammied]

dalechilders51 said it just right. No need to feel guilty. Pat yourself on the back. You are a wonderful person.

[heartfox]

My Sister

Has had MS for 46 yrs. She has lived with us for the past 2 yrs. All current MS meds have not helped. She is declining. She is not in a wheelchair yet. She only has me and my husband. MS us scary because I don't know what to expect next.

[arohk]

It's really tough to deal with I am still tring to keep strong and feel guilty when I crash as a caregiver coming here and meeting others has helped me feel I am not alone that we are all here for each other just hang in there.

[TheSpouse]

We have been dealing with MS for 16 years. My wife works hard to not let it steal her life. But MS does not care, it marches on. We do all we can to mitigate the damage and enjoy life as fully as we can.

We have had quite a few fun adventures when she is well. We look back and realize that we have more fun times than many that take life for granted.

And it is painful to see the relapses. It hurts to see her suffer and the latest jaw pain has been intense for her. We explore options and do all we can. And sometimes to hold each other and cry is all you can do at that moment.

Not feeling alone is important to my wife. I can't fix her. God knows I would if I could. Knowing you are loved, wanted, and respected means a lot.

My wife is a wonderful person that something bad happened to. I have to remind her often that MS is not who she is. She is that cool young woman, the kid playing in the yard, all those things. MS is a terrible disease that happened to a wonderful person.

You are doing great to be supportive. Try and do things for your own sanity. Get a bit of exercise too. Good for you and burns off stress!

[Waysnore]

I so understand how you feel!

There are days I'm not sure what to feel in this situation. Trying to be strong, take care of yourself, and support a spouse can be a very difficult situation at times. Most days is navigable, but there are days where it is not.

If your spouse is social, is he continuing to be social or does he only want to be around you? That's my dilemma.

[marie0610]

I'm glad I found this thread. My bf was just dx on 6/10/13 and it's already been a tough few weeks. We hate to see the one's we love suffer, especially when we feel that there is nothing we can do to help. All we can do is be there for support when they need it. I already understand that there are times when he needs to be alone and I am learning not to take things personally or think it is him pushing away, even though he has tried to get me to leave him twice (once the day he was dx and once a week ago when he had a little emotional breakdown and hand to cancel our date). It hurt but I know I can't be selfish about my emtotions; I know he just doesn't want to let me down. I know there is still a long road ahead but I'm determined to stand by him all the way and it's helpful to talk to other in a similar situation

[Waysnore]

You hit the nail on the head. It really is a day by day situation and trying to understand emotions when there's limited sharing is really hard. When two people are scared and don't know what to do it's even more challenging. Communicating is key; however, it feels as though that becomes more challenging rather than better.

Knowing your not alone does provide some support. No one can understand unless you're in the situation. Very hard.

[duckfan]

Yep, I understand. My husband of 42 years is really struggling right now with walking and it's heartbreaking.

Everyday is different, heck, every hour is different. My husband can go from enjoying himself to throwing his Bioness across the room yelling. It's not easy but I love it when he lets me do things for him. Unfortunately when he's at his worse he withdraws and shuts down. That's when I get depressed.

Nothing wrong with a good cry