Caring for the care taker

[angiew0722]

I think my husband is having a harder time with my diagnosis (RRMS) than I am. I know my future may not be pleasant and I'm definitely not the same as I was (slower, can't enjoy summer-my fav season, etc). But I'm not going to let my future ruin my present. He is stressing, I can tell, about my current issues. And he's keeping that from me. Really because he doesn't want to stress me out. But I've been with the man 13 years, I can tell when he is stressed. And him not talking to me irritates me and makes things worse. And eventually I will resolve to not lean on him so as to not stress him out. It's an ugly, viscous circle.  I'm frustrated because I'm not finding any support groups in my area, and we're certainly not driving hundreds of miles. Tonight I sent him away - to a friends art and auto show.  He needs a break. He really has been amazing since my flare up and health issues started back in April. He has been my brain, my legs, babysitter, housekeeper.... He truly needs a break. Any of you have any ideas? I'm at a loss as to how to help him...

[SarahL2491]

There is a book on help for caretakers that the MS society will loan you in the loan library.  Have you been to the national site?  It is full of wonderful information and has a mentor ability, where you can one on one with a mentor.......

[angiew0722]

Wow everyone thanks for the input. Yes I am newly diagnosed and I'm sure he does need time to accept. I just want to help And I know he won't ask me to help. I will have to look into a weekend retreat. And thank God for family and friends who will come and get him if even for an hour.

I'm sure more people than not have caretaker issues. It's not an easy role to be in. Most days I feel worse for him.

[SarahL2491]

I will probably be the caretaker for the caretaker.....my DH is much older and starting to have senility, hearing and eye problems, plus high blood pressure and I worry about him more than me.  I don't want to think of where the children might put me when DH can't care for me.

He does his best but I know he doesn't grasp the significance of what I have nor where it can go.  I have to remember to be patient with him also and don't always, so me bad.....am sure he would not go to workshops or seek help.
  I can only hope I can educate the children but right now they don't want to hear about it.......they would have to accept it I guess........I often wonder how many others have caretaker problems but not have brought them forward.

Glad you brought this up for discussion!

[HVAC]

My husband had a hard time with my MS and then my Cancer. We went to a workshop put on by the National MS Society for couples. Some chapters have the program as a week end retreat and some have it over the telephone. Basically it is about talking honestly with each other. It is hard to listen to someone being honest with you. It helped us a lot.

Caregivers did not sign up for illness anymore than we did. It can be harder on them to watch us be sick. Guys want to fix everything.

My husband gets sick of me being sick sometimes. He has to go to work and then sometimes come home and take care of the house and me to. Its hard and he gets tired.

I have to be understanding of his needs. That may mean going on dates when I am not feeling up to it. Once I set up a date and we go out to say an out door concert I enjoy myself. Or going on vacation when I am not that well.

I also have to do any chores I can, not leave him with everything.I do a little at a time.

Caretakers also need to be honest if not with you with someone. Often they do not want to hurt the person with MS feelings by being honest. They need support as well. My husband has friends he can talk to.

Caretakers also need to take care of themselves. My husband needs to exercise.He likes long distance bicycling, he needs the stress relief. He took a bicycling vacation while I was having cancer treatment last year and I stayed with friends. He needed to get away from the chemo and all for a week. My friends did not understand. I pay for him to have massages once a month.

I say to my husband I know this is hard on you and then we talk.

We are individuals and do not react to illness in the same way. For example my husband wants me to go to any length to fight my cancer. I believe in quality of life not quantity but I have to set that aside for him.. I do the treatment for him. I know there will come a time when I have to choice but to leave and he is going to be awfully sad. He is going to be left behind. So now I put myself through a lot of nasty treatments so I stay around for him as long as I can. I love him very much and that means I have to compromise.

I have to take care of myself for him. I need to exercise and have a good diet. I try to be as healthy as I can.

Illness is a one day at a time thing. Stress can be less if we live in the moment whether you are the one with illness or the care taker.

Its a dance and a partnership. Sometimes you have to give each other space as well.

Alex

[MommyofNatTyZach]

Are you newly diagnosed? It may just take him sometime to adjust and too see that you will be ok. Being the man of the house, he probably wants to fix the problem and make everything better, but realizes he can't.

It sounds like you are blessed. Keep open communication and things will prayerfully work out!

~B