Support Us
 
ShareTheCaregiving: a program of the National Center for Civic Innovation

Cappy Capossela: “38 WEEKS”

 

  • Your Image
    by

    Steve Lance

    It happened with lightning speed.

    One day Cappy was feeling ‘mentally fatigued.’ The next day she had a malignant brain tumor.

    As soon as Cappy was diagnosed, Sheila said she was organizing a Share The Care™ group. Even though I’d read the book and knew about the events that inspired it, I had nothing but doubts.

    In a room of 25 friends and relatives, I only knew three people well. These were all strangers. I knew what Cappy thought and felt about many of them. In time I would learn what they thought and felt about me. Good and bad.

    Click on an image above to view the rest of the images in each slide show.

    In January, 2002, Cappy’s father, Carmen Capossela, had been diagnosed with a malignant brain tumor. Cappy leaped into action and found him a neurosurgeon, a support group and was shuttling up to her parents’ home to help out.

    A few weeks later, Cappy started mentioning to close friends that she was having trouble thinking and getting her words out. We all assured her she was stressed and fatigued by her father’s illness.

    We were wrong.

    I’m not a caregiver and I’m not a team player. Groups and meetings make me cranky, irritable and bring out the smartass in me. I didn’t know how the group would work. Who would deliver and who would bail. Who would be capable and who would drop the ball. Then I realized I was just thinking about myself. Whether I’d deliver or bail. Whether I’d be capable or drop the ball.

    Actually, it’s one of the magical aspects of the group: everyone thinks they’re carrying the whole load. And, in a way, they are. But proportionally, the whole load is a whole lot lighter when 25 people are sharing it. By the end of that first organizational meeting I was starting to breathe for the first time in a week.

    Thank God for the book. With both Cappy and her dad terminally ill, the needs of either one would have overwhelmed everyone. But with a Share The Care™ group for Carmen and another (overlapping) one for Cappy, somehow we got by.

    Did the processes and procedures unfold exactly as Sheila and Cappy described in the book? No way. But the book provided the structure to deal with whatever came up.

    For 38 weeks we lived a nightmare of emergency rooms, hospitalizations, treatments, surgery, alternative treatment, home hospice care and, finally, a funeral and memorial service.

    For 38 weeks we lived moments of joy. Extraordinary feats of simple kindness by friends and strangers.

    The Internet was indispensable. Group e-mails. Individual e-mails. Committee e-mails. Bitching and moaning e-mails. Tears and laughter e-mails.

    A few months ago, I was re-reading the (thirteen hundred!) e-mails that were shared back and forth by the group.

    It’s all still there. Forever. Everyone’s personality. Cappy’s illness. The setbacks. The demands. The gifts. The hopes. Everyone’s fears, uncertainties, certainties, opinions, hopes, beliefs, concerns.

    Some people started out gung-ho and faded. Some started tentatively and became key players. Some quietly accepted their role right from the start and just delivered, no complaints, week in and week out.

    Small contributions were as valuable as large. I remember one person who only helped out twice in the nine months. Both those visits were perfect and perfectly fine.

    Yet everyone rose to the occasion. The emergencies and setbacks. The decisions. The simple acts of kindness: like the impossibility of giving her one last weekend at her summer house. Hired vans. Nurses. Friends. Transportation. Emergency midnight calls. The group did it.

    Her illness unfolded at an unbelievable pace. It seems we went from crisis to crisis with very little time to regroup.

    It was not without humor; starting with Cappy’s. “The Funny Family” was Susan’s group. It didn’t feel right to Cappy. Since she was dealing with a brain tumor, she surrendered to the dark side of her humor and called us “The Brain Trust.”

    It was the perfect name. It took all our talents, love, heart and brains to make it work. And she trusted us with her life.

    We couldn’t save her. She passed away 12 hours after her dad and a joint funeral and memorial services were held. But a year after her death, I know no one could have been surrounded with more love and compassion, caring and concern than Cappy had those last 38 weeks. And that, in the end, is the final gift of “Share The Care™ .” I don’t believe any member of the group was left with any “what if’s…”

Leave a Reply

Your email address will not be published. Required fields are marked *

*