When we developed Project Caregiver , we recruited a small team that we dubbed "The Fab Four" - comprised of me, Judy Hart, Tom Crew and Becky Smith. We've met a few times, (sometimes over soup, other times over stacks of paperwork) to talk about what giving care and receving care means, as well as to reach out to the caregiving community in Lincoln. We've brainstormed possibilities, told each other our personal stories and already learned a lot more than expected...(more to come on that last part).
Tom attended a spinal cord injury support group at Madonna a couple of weeks ago. I wanted to know a little bit about that experience and his thoughts about Project Caregiver.
ME: Tom, can you tell us a little bit about your role with Project Caregiver?
TOM: I was asked to participate in The Angels Theatre Company’s upcoming “Project Caregiver”, and I jumped at the chance to work with two women I immensely respect, Judy and Becky. I was asked to explore further the programs on caregiving that were being offered in our community. So I was assigned different agencies, made contact with them, and let them know about our Project, as well as Angels wanting to know about theirs.
ME: What does the word "caregiver" mean to you?
TOM: Dictionary.com states, “One who cares for an infant or child; One who cares for the sick or disabled”. This probably covers 50 or 60% of what I have found to be the reality. Parents are naturally caregivers. The professions of Nursing, Medicine, Social Work, and Teaching are those of Caregivers, among many others. Mentoring, standing against bullying, and volunteering at a Food Shelter is Caregiving. In my mind, Social Security, Medicare, Medicaid, and Universal Health Care is Caregiving. The best of Religious Beliefs (regardless of Creed) is about helping others at the expense of the real or imagined possibility of our own loss(emotion, time, money). But at the same time, caregivers are drawn to it because of what they receive in abundance.
ME: Why is a community conversation about caregiving so important?
TOM: Because it is what we all are facing every day whether we notice it or not. Who hasn’t been cared for in some way? The advantage is that the collective community can share stories that touch individual lives, and thereby give validity to any range of emotions, struggles, and victories that people encounter on all degrees of caring for another individual. Like all good theatre, this Project allows us (the audience) to experience the conversation in a way in which we can determine for ourselves what our response will be. But there is no response without thought; no thought without the experience; and no questions asked about that experience without the actual Project (play).
ME: What kinds of experiences have you had as part of Project Caregiver?
TOM: I was a reluctant caregiver myself (and was even angry) when my Mother decided to move a few blocks from me instead of into an assistant living community. I surprised myself that I came to not “hate” it, then “welcomed” it, then “enjoyed” it, and then was “devastated” by it when she died. Had she not been so geographically close, and myself not as the caregiver, then I would have been spared that day of discovering my Mom dead. It was more than I could, or can, bear. (I did not have the stomach or courage that most caregivers have). That is why I can say that caregivers are of a heroic class of folk; and those that receive the care are as well.
My talks with many of the caregiving recipient patients (at a Lincoln hospital) said something over and over again, “I feel guilty that my wife (husband, child, etc) has to take care of me”. This is heartbreaking. We live in a culture that strongly values individual achievements and dignity, but discounts a community getting together to help those in need (because it is inherently indignant). I believe this is what makes America’s caregiving stories so vastly different than Europe’s, or even more than Africa or South America. Our stories will tend to be about an individual helping another, whereas other cultures place this on the community.
Another interesting story was that individuals who became paralyzed went on to mentor and care for recent patients of paralysis. They had fought through their own fears, frustration, pain and despair, to emerge as mentors and caregivers to strangers- despite the anguish of reliving their own memories in order to help another. Talk about courage.
ME: Have there been any surprises along the way?
TOM: The courage of good people in the face of apathy and indifference is both a surprise and a welcomed old friend. Apathy continues to confound me.
ME:. Why is story collecting important?
TOM: We might fancy ourselves as good writers and truth tellers, but individual stories have made us who we really are. We collect them and disseminate them because they allow us to learn from them, incorporate their significance, and throw us into a place where we will thrive and better ourselves due to their lessons.
ME: What kind of stories do you hope to collect as part of Project Caregiver?
TOM: I would like to expand my awareness of both caregivers and who they care for. I think I am ignorant of both parties. I have my limited experiences, and am beginning to appreciate the work, love, dedication, and suffering that go along with caregiving and being cared for. It’s a two-way road for both groups, full of potholes, tar, stop signs, and selfish drivers. But when the fire truck comes, we do tend to get out of the way so that people can help people. Project Caregiver will give more people the permission to be fire fighters.
