A Forum for Her: Part 3 | Support Group Members on Challenges, Treatment Decisions, and More

Kathie Houchens and Karen Bernatis co-facilitate multiple support groups for women whose partners have stage 4 Advanced/metastatic prostate cancer as part of ZERO's Us TOO support group network. Kathie, whose husband is a twenty-two year survivor, and Karen, whose husband is a seven-year survivor, reached out to more than twenty support group participants to glean their wisdom to share with others facing similar challenges.

These support groups, called A Forum for Her, offer safe spaces for women to share their journey in a confidential circle where others understand the challenges and lived experience of the journey with prostate cancer. These Zoom-based virtual support groups meet either weekly or monthly as fits the group’s needs. Truly “a couples’ disease,” prostate cancer affects the very relationship that needs to be strengthened and supported, now more than ever. 

In the final of our three-part blog series, the topics and comments here come from the trenches, where day-by-day victories are celebrated, difficulties are acknowledged, and emotions shared along with coping skills and big doses of love and hope.  Female perspectives have been merged to protect their privacy and allow for overlap of ideas.

What are your thoughts on “caregiver” as your identity?

“I’m okay with ‘caregiver’ as my identity, although it has a broader context for me now. It is not just a matter of waiting on someone who can’t care for themselves, but rather stepping into roles like managing medications or taking over financial responsibilities for the family.”

“With prostate cancer, we are in it together; ‘co-partnering’ is more apt for us.”

“I do not care for the term ‘caregiver’ at all! Way back, it was probably a good term, but I have had to clarify with medical personnel that I am [my partner’s] wife and therefore need to know what I need to know. My husband and I agree that I am his assistant in healthcare – his partner in life – and healthcare is part of life. ‘Caregiver’ feels weak and lacks the expectation of authority and dedication to positive outcomes. I am fully invested in this journey that is mine, too.”

“The terms ‘caregiver,’ ‘co-survivor’, and even ‘co-partner’ don’t fit me well. My husband takes charge of his health and treatment and doesn’t see me as having any part in it. He is ‘taking care of it.’ I am in my own space, and that feels lonely sometimes.

“I really don’t like the label, because my husband is self-sufficient; I prefer ‘love-giver.’”

“My husband refers to me as his lawyer; I attend all his appointments as a second set of ears and then research whatever is going on to understand and ensure that we are not overlooking anything. While my husband is self-sufficient, he’s not able to do most of the things around the house like he used to. In that sense, I’m a caregiver taking over the cooking, cleaning, and other chores.”

What are some of your thoughts on grief and loss?

“The main thing is to take one day at a time and enjoy each moment we have. We all want more time. The key is to use that time in health-giving ways. If you can, make plans that give you something to look forward to, to celebrate, to make memories. Keep your focus on the present moment and find some spark of joy every day.

“I feel that dying is part of life – it is not separate from life. I focus on being grateful for every day that my husband is here. My only concern is that he does not suffer. I can’t bear to see him in pain. I also feel that being by my husband’s side is a great comfort for both of us. Being with someone through their last days is also an honor. I would want to know when to just ease into the natural way of his condition and not work to fight the inevitable if my husband does not want me to.”

“I am a very independent individual, but I also know that my husband’s passing will devastate me, because it is his very nature that I love. Just being in a room with him makes me feel good. I don’t know what I will do when he passes. As much as it is a natural part of life, I dread it. This is why I focus on the here-and-now and am grateful for it.”

“I know the grief of this journey can come in waves. It is not just the end of the road that brings strong feelings, but the fear and unknowing along the way.”

“I know there are a lot of trite sayings about grief, but they happen to have some truth to them. For me, it would be to live each day as it comes to the best of my ability. Plan to do the ordinary: make the bed, take a shower, go get the weekly manicure. Routines can be helpful. Above all, trust in the future and in your faith, whatever that faith may be; and be sure to expose yourself to comedy. Laughter and lightness can be very healing.”