For Partners and Caregivers

My partner Ann has been a tremendous support for me. Her life has changed, as mine has, so I wondered what supports have been important to her. It was interesting to me to interview her about this because, though we have discussed these questions along the way, in the interview we both focused on her needs for a more extended time than we usually did, so I learned new things about her experiences. My interview with her follows:

What advice would you give partners of people with life-changing conditions like brain tumors?

Realize that you aren't the one with the brain tumor, that your part is to be supportive. The person with the health issue has to figure out how to deal with it. Just be supportive but know that you are not in charge.

Go to doctors' appointments with your partner. I went so that I could hear the news myself and so that I wouldn't have to ask you a lot of questions. I also went so that we would have two people listening and getting the information. And I went to be supportive. I wanted to hear the news first hand from the doctors and to meet the doctors.

Look for the good things you and your partner can share, instead of just trying to do things like you did before, even if it's really different from how you spent time before.

Give yourself time and permission to grieve what you've lost—or really how your life has changed. For me it was important to talk with a therapist I trusted.

It is a challenge for me to allow myself to do some things that my partner can't do anymore. That's hard for me. It's still hard for me to do things I know you would like to do and you can't do.

What's helped?

The thing that's been most helpful has been you because you've taken your tumors and disabilities on and decided to make the best of it, and you have encouraged me to go for a hike with someone or do other things you'd like to do.

Friends who have checked in with how you're doing also ask how I'm doing.

Working helps me. It's something I'm really interested in that takes me away from home responsibilities and gives me a different focus. That's always been good for me.

What's been hardest?

My partner moving from a full-time playmate to a part-time playmate and the fact that we can't do things together that we used to be able to do [have been hard.]"

The hardest thing is figuring out how to stay in the present, especially with the second tumor, and not get sunk by wondering what will happen in the future. But I think we've gotten closer going through this.