Published on September 4, 2019
Where can care partners find support? Noted expert Dr. Barbara Andersen, from Ohio State University, discusses core issues couples dealing with cancer face, and shares tips for managing caregiver stress and preserving personal well-being. Chronic lymphocytic leukemia (CLL) patient and advocate Mark Silverstein also shares how to cope with fear together and to avoid conflict. Watch now to learn their expert advice for care partners in cancer.
This program is sponsored by Pharmacyclics. This organization has no editorial control. It is produced solely by Patient Power.
Transcript | Tools for Care Partner Support
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Barbara, I want to turn this around for a second. So, you mentioned some people live alone, and certainly, with the average age of CLL diagnosis being 72, some people may have a spouse or partner, but they may not. But, when we do have somebody perhaps living with us, sometimes, even if we manage our stress, they’re not managing theirs, and that’s stressful for us. So, any tips for these relationships we have where we can have strength from support, and particularly if it’s somebody very close to us that we can’t push away, how we can have them see that they’re stressed out themselves and stress-producing for us?
I think that the core of any couple issue is communicating, and communicating about that fact as well. It’s also the case that caregivers, partners—they can simply be burnt out, and that can happen in part if people only rely on their spouse, if there’s no additional people there to support them as well. And so, both the individual with cancer, as well as the partner, need contacts and safety valves other than each other in the system because they have their own support needs. They have their own issues to cope with along with the worries that they have about you.
And, those are potentially difficult conversations, but can come from the standpoint of how can the two of us rely on each other, but how can we also receive the support and help from others that may be helpful to us apart from each other? Communication is the basis of couples coping with any problem, including that for cancer.
Right. I think that’s true. I know it’s been true—we’ve been married 33 years, and 23 years was CLL, and I know Esther speaks with others independent of me. Just what you were saying, Mark and Paul, is I’ve gone to certain groups myself—only patients—and we can talk turkey, if you will, because we all have that purple heart of the diagnosis, and there’s a lot of stuff we get that maybe somebody else wouldn’t.
One thing about couples, though—Mark, I’ve met your wife a couple times, Nelia, and I’ve spoken to her, and we’ve talked about this. So, does she—you’ve been through the wringer with it, and she has too. Does she seek outside support herself?
Absolutely, and she actually started a program for care partners herself at our local library to try to give back and help. I totally agree with everything said. It’s extremely stressful, I’m sure, for her. Even though I’m the one with the existential threat hanging over me, she has to live with watching me go through that, and watching someone you love go through that is an extremely stressful event.
After nine years and the ups and downs we’ve been through, I’m sure she’s a little burnt out from the whole thing. I know I am. I’d like to put a rest to it for a while, but I have no doubt she’d like to, too. It’s very challenging. I totally agree that whether it’s other people—I see a psychiatrist who specializes in chronic cancers. Nelia has seen other psychotherapists and talked to other people. It’s extremely important to share things, and it’s also important for the two of you to share things.
Andrew, we’ve talked about—maybe I’m afraid about something. Let’s say we’re going for a test, and I have a lot of fear built up around the results of that test, and Nelia does too, and I don’t want to say something because I don’t want to freak her out any more than she’s already freaked out, and vice versa. But, in the end, we end up in conflict because we have so much energy and stress built up that you end up in conflict over it.
And so, we learned the hard way at the beginning to really try and express ourselves, not being concerned with whether I’m gonna overwhelm her or she’s gonna overwhelm me with her fears or my fears. Let’s talk about it. We probably share some similar fears, and that way, it alleviates potential conflict as well, and it also puts you guys on the same page. It becomes a little more of a shared experience. I think that’s a really important part of it, too.