Louise is a retired social worker and clinician, with a long career as a mental health administrator.
She immediately knew that her husband, Fred “… was just wonderful. He was handsome. He was very bright, very kind, lots of fun. He had a great sense of humor. And, we had the same kind of professional interest as well as music.” She and Fred were having a great life when he was diagnosed with prostate cancer, which had metastasized before they diagnosed it. He was in kidney failure when he first got sick. He was in his late seventies. “And that’s one of the things that I have a great deal of … I won’t say anger anymore, but unhappiness about the fact that much of my work in the Public Health Service had to do with research, looking at ethnic and racial differences in morbidity and mortality, and sickness and in death rates. There’s a huge, major problem with both morbidity and mortality in people of color in this country.”
But Fred was just determined.
“He didn’t think he was going to leave here…. I was the caregiver when my husband developed cancer. 30% of caregivers pre-decease the patient. And one of the important things that I learned going to Hope Connections was how important that programs for caregivers there are. Well, first of all, when you’re a caregiver, you’re not the identified patient. So here you are doing all this stuff to help the patient, but you’re not the focus of any of the helping services that you go for. So, it’s very important that the caregiver get emotional support, get information. The caregivers group was just very meaningful to all of us, to all the caregivers. And the Hope Connections groups are all headed by professionals who really know what they’re doing. I went to the caregivers group. I go to yoga. I go to meditation. The mindful meditation groups are wonderful. They have relaxation and tranquility groups.
You go to these sterile places, clinics and emergency rooms. Some of it is kind of scary. And you walk into Hope Connections and it’s just beautiful. It’s like going to a home.
So, it’s a healing place. I convinced my husband to go, which was a big thing for him. Because he was used to helping other people. He didn’t think he needed it. But he certainly did. So, he went to the advanced cancer group because he already had stage four cancer when they had diagnosed it. I went to the caregivers group. We know that social isolation is deadly. We have this phrase. It takes a village to raise a child. We know very well that seniors who live in social isolation, or don’t have meaningful relationships die much earlier. They really do…But, I have some wonderful friends that I’ve met, and friendships that developed with other participants.
These catastrophic illnesses are our family diseases. It’s not just the identified patient. The whole family suffers as a result of the stresses that you’re encountering. And I wrote something down as I was thinking about all this that I call the three Cs. First is change. Major. It’s traumatic change. These are not happy changes like getting a better job or moving someplace that you’d like to move geographically. These are traumatic changes. And then it also requires compassion and it requires courage… But Fred and I adopted a new model, after we went through all these things. And it’s that “life is not about waiting for the storm to pass. It’s about learning how to dance in the rain.”