Father Kate and the un-anticipated aspects of community involvement

We call her Father Kate. ‘We’ being regular attendees of a post-exercise coffee klatch. Kate was ordained as a Minister after retiring from teaching. Slim, stylish, attractive, mischievous, she beams with pride and loves to be called ‘Father’.

Not long after her ordination, a mammogram revealed breast cancer. Kate willingly shares all aspects of her treatment and recovery. I asked if she ever gets advice, input or direction when she talks about it. She exploded a “Hah! From everyone. All the time. Even when I don’t want it.”

Father Kate’s experience echoes what I consistently hear from those lucky enough to have a community with whom to share their health struggles: you become the property of that instantly-created community. We agreed, Father Kate and I, that – however well-meaning – community has to be managed.

A mutual friend joined us. We shifted conditions, from cancer to depression. Father Kate has, of late, been troubled by her sister-in-law’s change in personality. She’d begun taking anti-depressants and the good Father feels sis-in-law is now like a ‘Stepford Wife’.  “I’m going to tell her she should get counseling,” said Kate.  “She needs to find out what’s causing the depression, and not just take a ‘happy pill’ ”.  Mutual friend is a psychologist who sees depression in her daily practice, and took over the conversation. Good thing she did, because I was speechless.  Kate seemed ready to commit the same sin she’d so recently decried.

However, the two conversations served to underscore a Universal Truth: community has needs too.  It’s rarely acknowledged or discussed, because it seems frivolous, bordering on self-centered to think of your own needs when it’s someone else that’s in health crisis.

The benefits of community are well acknowledged, starting with the energy of collective good will: each and every one wants you to succeed. They want you to get better. And they want to be able to contribute.  Offers of food, companionship, distractions, and transportation all come from the right place.

The difficulty is that these contributions can result in making food the patient can’t or doesn’t want to eat, dropping by when patient wants to be alone, transportation but not when and where the patient needs it.  Also, understandably, the community wants to be kept informed  –  which can be an onerous and exhausting mission for patient and caregivers. Many in the community seem to become instant SME (subject matter experts) as Father Kate’s experiences show. Getting advice, input and direction  – however well-intentioned –  can become tiring and tiresome. Bottom line: although community contributions are important to the community member, they may not align with a patient’s wants or needs.

I remember a PBS documentary that follows four people in their 30’s and 40’s whose prognosis is not good. 33-year old Marla has pancreatic cancer and knows and acknowledges and seems to have accepted that she’s going to die. Her father does not, will not, cannot accept it. Just a year ago, his beloved wife died of cancer and he feels he didn’t do enough. Even as Marla loses strength, her father insists upon traveling to yet another teaching hospital becuase ‘they know more’. Through her father’s trauma, Marla unfailingly understands. She leaves it to other community members to sometimes not so gently remind her father that nothing can be done. Marla’s job to ‘take care’ of, to manage her father. Just by listening.

Listening without judging, commenting, offering direction can be one of a support community’s greatest assets, and one of its greatest challenges. Which brings me back to Father Kate. The change in her sister-in-law is very troubling to Kate. “I just don’t recognize her. She’s always cheerful. Sometimes too cheerful. She doesn’t seem to care about anything: her two grown up children were arguing and she threw up her hands and said: ‘they’re adults. They can work it out’. This just doesn’t seem right to me: She’s their mother. Shouldn’t she care what’s happening?”

I wonder if Father Kate needed to articulate her despair as desperately as her sister-in-law needed to seek help. Perhaps Father Kate will eventually adjust to and accept her ‘too cheery’ sister in law, or maybe Kate will resent her use of drugs and hold it against her. However, when I hear ‘needs to’ or ‘should do’ something Kate (or any community member) feels strongly about, I think Father Kate might consider asking herself, the same thing she’d ask of her well-meaning community: Whose health is it anyway?!

Kathy Kastner is the editor of Ability4Life.com, for adult children caring for their parents, and is very involved in patient-centered education, and its many interpretations. She is also a CareToKnow.org community member.

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