Us Too and A Forum For Her: Supporting Caregivers and Partners

ProstateCancer.net sat down with Us TOO to talk about the organization’s support groups designed for caregivers and partners. Kathie and Polly are volunteers who assist in running “A Forum for Her” -- a support group for women whose partners are living with prostate cancer.

Meet Kathie and A Forum for Her

I’m Kathie Houchens, a retired Spanish and French teacher, musician, spiritual director, and artist/writer. I was not yet retired when my husband was diagnosed with prostate cancer in 2001 so I did not get involved with Us TOO until later in the game.

Dave, who founded Us TOO, encouraged me when I completed my spiritual formation training in 2009 to accept a leadership role in our local support group, then only for men. We started a women’s component that has been meeting successfully for ten years, side-by-side with the men’s group once a month. It has become my passion to be an encourager of women who share this journey by participating in the Facebook page and as a phone call host each month.

How can partners and caregivers get involved?

The Facebook page A FORUM FOR HER began to make EVERY DAY a day when a woman could reach out to express a need, a question, or just be in touch with a new “friend” who would listen, understand, and companion her. For women only, this is a closed group and a safe place to open a discussion or share a personal need. Others can respond knowing those participating consider information shared is confidential. Group members can also invite women they know to join.

For the monthly phone calls, emails go out from Us TOO to all the women in the Us TOO network who have reached out to say they are interested in participating in the monthly calls. Terri Likowski from the UsTOO staff is the main contact and shares the monthly schedule with all of those who are on her confidential list. The phone groups are limited to about eight ladies so the calls can be a more intimate setting and everyone has a chance to talk and share. Typically there are 2 - 3 calls per month and they are all led by women volunteers who have a partner with prostate cancer.

What challenges do caregivers face in your groups?

There are a number of common challenges women face when supporting a partner with prostate cancer. Women talk about ensuring that self-care is something they prioritize, understanding the treatment choices as well as their potential side effects, and coping with men on hormone ablation that is often accompanied by mood swings and depression, weight gain and loss of libido. Other challenges we talk about frequently are keeping communication open about intimacy needs when dealing with treatment side effects, learning how to be an encourager of life-style change that includes more regular exercise, and learning how to support ongoing health challenges with better nutrition, new diet choices.

Why is peer support important for prostate cancer, for patients and caregivers?

When faced with a cancer diagnosis of any kind it helps to talk to somebody who has lived through it or is in the process of working through it. A shared journey lifts the burden of feeling alone. Both patients and caregivers need to be grounded in reality, and fear can throw newly diagnosed folks into panic mode. A support group supports without advising, loves without judging, stays alongside no matter where the journey takes you. As some say, this is a “fraternity/sorority” you didn’t ask to join, but here we are, in it together. It is a good place to be. An honest open forum to ask questions and seek answers that benefit the group wisdom. The more ways this can be achieved the better, so while an in-person local support group may be ideal, for those whose geographical location makes that impossible can still find the help and information that will make the journey a little easier.

Meet Polly and her husband, Tarry

My husband Tarry, found out about our local Us Too support group after his proton radiation in 2008. The group welcomes spouses so I attend. Hearing the men being transparent about their treatment and problems has made me feel comfortable talking about it too.

I have been helping with the “A Forum for Her” for a few months now. A common challenge for some caregivers is their husbands not wanting their wives at the meetings or that there isn't a meeting near them. It has been rewarding and encouraging to have the ladies connect with each other! They are so grateful to have someone experiencing the same challenges they have encountered.

This has been a really rewarding experience for me and it has been so great to connect not only myself but for the other women on the call with each other. Many of them are communicating with each other and supporting each other on a regular basis!

Connect with an Us TOO support group

If you are a female caregiver and interested in joining one of our monthly calls or would like to start your own support group, reach out to Terri Likowski, Us TOO Program Director of Support Group Services, at terril@ustoo.org and she will add your name to the list.

If you are a partner or spouse supporting someone living with prostate cancer and would like to share your story, you can by going to ProstateCancer.net's share your story submission page. Tell us how you support your partner through diagnosis and treatment and what advice you would give to others facing prostate cancer.