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?