How Can Caregivers Find the Support They Need?

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Topics include: Living Well and Patient Stories

When a spouse becomes a caregiver, often their partner's needs take center stage. So how can a caregiver ensure they are also receiving the support they need? Esther Schorr, advocate and wife of Patient Power founder Andrew Schorr, shares her experience coping with Andrew's CLL journey and her advice for building a support system. 

This program was sponsored by The Patient Empowerment Network, which received educational grants from AbbVie, Inc., Genentech and Gilead Sciences, Inc.

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Transcript

Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Esther, how have you not only supported me but how’ve you supported yourself? Because you didn’t want to tell me you were feeling bad ‘cause that wouldn’t be helpful to me. But we had two little kids. Now we have three. I’m still living with cancer. I developed a second. We’ll talk about along the way. How do you take care of yourself?

Esther Schorr:

Well, I think that’s evolved over time. When you, when Andrew was first diagnosed, it was devastating I think to both of us in different ways. But the first thing I did was I said I need counseling. That was the first thing, because the challenge I felt I had was I had to be strong for you and be there to support you in whatever what was going to happen with your therapy. But I also was really feeling the pressure of how do I shield, at the time, very young children who weren’t going to understand what was happening to Daddy. You know, Daddy’s not feeling well, or Mom’s not so happy today because she’s thinking about what’s going on with Dad. And I had to kind of sort that out, and I felt that the best thing that I could do was to get into therapy myself. And Andrew and I got into therapy together as well.

As the children got older, and now we have you know a 24-year-old, a 21-year-old and a 17-year-old, they’ve become part of an incredible support system. So while I have tremendous respect for the individual decisions that people have made that you’ll hear from today, patients about whether they disclosed whether they were dealing with CLL or not, it was a pretty personal decision and a joint one between Andrew and I that as the kids got older to help them understand what was going on and to bring them into the circle of support. I would say the other thing for me was that you know we had four years of the watching worrying and waiting period, which I think I don’t know which of us was more freaked out when Andrew would go for his blood tests—me or him. But two days before, I’d get really freaked out, and he’d come back and say, okay, we don’t need anything yet. But when he finally needed treatment, and it was at MD Anderson, I clearly remember that when you were going through your cycle of treatments there and then at home, I needed to call my mom. You know I reached out to my mother and to my brother, and I was able to use that as an emotional outlet, because that wasn’t an outlet that I had with you and with the kids. So I don’t know if this is advice, but it’s more like reflection that I held myself together not just me, but engaging a support system was probably the thing that has always gotten me through.

Please remember the opinions expressed on Patient Power are not necessarily the views of Seattle Cancer Care Alliance, its medical staff or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on April 30, 2015