Caregiving on the Horizontal

In the early 90’s I was the primary caregiver for my Dad at the same time I was doing caregiving for clients who had HIV disease.

I was aware from the get-go that there were major differences between caring for people much older than me and those who were in my age group; also caring for a parent is different than caring for clients and friends. Some of the differences are very obvious---age, relationship configurations, family stuff, etc. Some are more subtle---information sharing, making agreements, building trust, etc.

I worked to develop a model to illustrate the differences. It’s important because more and more of us are caring for and being cared for by friends and neighbors. Breakdowns in communication are stressful for everyone.

Caregiving on the vertical is what we consider the norm---inter-generational---family members taking care of parents. Family members have a long history with each other, shared values, often a private language, and expectations of each other (often unvoiced, even unconscious).

Caregiving on the horizontal occurs when friends and neighbors are providing care. There might or might not be a long history and shared values. There might or might not have been a lot of disclosure and/or expectations.

Here is one example of the difference. A mother can say to her daughter (out loud or tacitly)---I am your Mother; (implication: you owe me)---and not worry particularly about the cost/impact of the extra work on her daughter. In her mind it is balanced. She took care of her mother and now her daughter is taking care of her. She gave her daughter life and years of care. Now her daughter is doing her duty in return. Life goes on.

Most of us were conditioned to this kind of inter-generational flow of care. But what if it is a friend who has breast cancer or HIV or ALS. How do we even begin to talk about helping each other out? Keeping the exchange balanced? Noticing when we are acting out of our family history with folks who are not family?

Mutualism in the Movies

Last night I watched Clint Eastwood’s movie, Gran Torino. Here we have an old man, newly widowed, who’s once all white Midwestern neighborhood is now a community of Hmong. Walt is a retired auto worker---house-proud, foul-mouthed, bigoted, truculent, mutually estranged from his children and grandchildren and afflicted by bitter memories from the Korean War. He also has advanced lung cancer.

His teen-aged next door neighbor, Thao, as part of his gang initiation tries to steal Walt’s pride and joy---the Gran Torino. Walt stops him in the act. Later the boy’s sister comes over to explain that the boy has to work for Walt for a period of time in order to make amends. Initially Walt refuses but then agrees. His neighbors begin bringing him offerings of food and flowers which he first throws away and then accepts.

Where do we see mutualism---a relationship between individuals of different species where both individuals derive a benefit? Three scenes come to mind:

--Walt eating mostly beef jerky till his neighbors shower him with food---which he comes to accept.
--The contrast between his son bringing him a reacher (a tool used to access stuff on shelves---to avoid the dangers of getting on a step stool) and Thao’s sincere awe at Walt’s many competencies.
--Saving Thao’s life in a way that both guarantees the boy’s future safety and lifts the burden of guilt Walt has carried since the war.

None of this could have been organized in advance. It is about people whose needs exceed their self-sufficiency---pushing them to at least try to relate to each other.

Emerson’s Self-reliance meets Hillary Clinton’s It Takes a Village.

Mutualism as a Caregiving Model

Thinking more about Clint Eastwood’s movie, Gran Torino...also scenes from Witness where Amish farmers come together first to build a barn and then to defend Harrison Ford and the Amish family from corrupt cops.

Mutualism is custom designed for each species partnership. It can’t be legislated. It has to grow out of the specific needs of the participants. It evolves. It might be qualitative and/or quantitative.

Why do I think that mutualism is the best model for caregiving and especially for providing long-term care?

• There is less paternalism and co-dependence because all parties are interdependent in ways that can be observed and measured.

• It is possible to maintain self-respect no matter how dependent one is for services.

• It is possible to maintain self-respect no matter how menial the caregiving tasks are.

• Mutualism as a relationship process can be developed, strengthened, and repaired as required.

• Mutualism offers a way to talk with family members about caregiving realities in a way that temporarily transcends habitual family communication patterns (family history, the various family trances).

Place is a major factor in mutualism. The characters in Gran Torino are next door neighbors---Walt won’t move and the Hmong families can’t. The Amish farmers In Witness depend on each other---come running when the alarm bell is rung.

We saw a real-life example of this in San Francisco during the worst of the AIDS crisis. Many elderly Irish Catholic residents in the Castro were leery of the young gay men pouring into (and changing) “their” neighborhood. As more and more of these interlopers became sick from this strange new illness many of these neighbors provided all sorts of care. What made it mutual?

Caring flowed both ways.