Caregiving Ah Ha

[Joppette]

I'm a moderator of this forum because I've been a caregiver for multiple people in my family that had cancer. My experience is extensive (not a brag, but the truth).

Today I want to post about caregiving from a different perspective, since I am about to face a possible diagnosis of a new tumor, and possible surgery and treatment.

When I was first dx, my caregiver was my husband, and he was my hero, my champion, and advocated well for me. He was impecable in his support through all of it. He did not go to Gilda's Club to get support from other caregivers, because he felt he didn't need it. He felt he was in control, and I survived so that's that! Right?

I've finally realized, as I face this next go around, that he went into a mode I call "it's over and done, and now life goes back to normal". That was his expectancy. Honestly it was mine too.

Once chemotherapy was completed, I fully expected to get back at everything like before. But after cancer, life is never as it was before. We all know that. If the truth be known, life never goes back to the way it was before with ANY and ALL life changes, whether it is a death, or a trauma from crime, an accident in a car, or any other thing that forces us to deviate from what once was "normal".

The concerns he's expressing right now sound like they really are concerns for him. I think he is fearful of what changes will happen, and what will it mean for his quality of life. Obviously he cares about mine as well. But if my lung capacity is diminished further, that impacts what we can or can not do together. He is worried about that (though would not admit it if I asked). He's my warrior, my hero, afterall.

So this time around, I think I am going to ask him to join Gilda's Club and become a part of the Family and Friends support group. There he can talk openly and honestly about those feelings, without worrying that if he said he had those feelings with me, that it'd hurt me.

He would not share openly here because of the fact that I'm here, and that would kind of defeat the purpose of his reaching out for support. So I hope he will agree to come to Gilda's with me. I'll go off to my support group, and he can go off to his, and we both can get the support we need there.

Of course I'm blessed because I have both, an on line support family (you) and my live support family at Gilda's.

Just some random thoughts I felt I wanted to share.

Thanks!

Judy in MI

[ts]

Judy,

Great post. I started with an in person group in February 2010 and found it very helpful. My caregiver did not feel a need at that time, though I let him know a caregivers group met at the same time. This past winter, and me back on chemo, I mentioned it again and he said yes to going.

It's hard for him sometimes to be around so much loss (and they have more than our living with group seems to have) but overall, he is glad to have the support and understanding. He has also said he understands more of what I am going through from listening to the stories from other caregivers. Like most patients, I try to shield my loved ones from some of the day to day adventure, though I am very open with him overall. He's even gotten to feel the uncomfortableness of me doing well relative to what other caregivers are experiencing - a different form of survivors guilt?

I would not pressure anyone into a group, but letting your caregivers know there is support available is a great idea. It might take a few meetings to know if it is the right group, or even if group is right for them.

M has also stayed off this forum as he knows it is a place for me to be very open and he respects that I need that too.

[Joppette]

Thanks Katie! Let's "talk " about this in email or phone. I'm around tomorrow. If it's anonomyous, I don't think he'd care. These are very valid caregiver issues and should be talked about.

Judy