Living under constraints, less emphasis on death and dying

To speak or think of “dying” is to keep the focus on a seriously ill person being dead in the foreseeable future. Looking ahead to the person soon being dead shapes what others—the caregivers (or other visitors)—do (unless we want to rely on there being life after death). A different view and different practice follows once we insert the category living under constraints into the picture and separate this from looking ahead to a time when the person cared for is dead.

Under this category, the caregivers provide the best support for the living that is happening day by day, with its ups and downs, for the person cared for. The person experiencing this consistency of support gains a rock to hold on to until the end–especially towards the end. One part of this support is to help the person cared for not to be asked to say goodbye to their life and, at the same time, helping them become prepared to do so at some possible point in the future.

For the person cared for, living under constraints comes unavoidably with frustrations at those constraints. It is not surprising if depression follows. That can be readily mixed together with sadness about the loss of being part of the future that caregivers (and other survivors) will have. The person cared for won’t be there to hear of their highlights, accomplishments, reflections, or to be depended on in times of others’ needs. Yet, instead of dwelling that impending loss, the person cared for can enlist the efforts of caregivers to put things into place that the person would like to envision being in that future, from having a tree seedling planted to caregivers getting into healthy habits (such as consistent exercises to reduce back pain). The emphasis is on living.

Does living under constraints mean missing out on making opportunities for important conversations and interactions, which might set up the person cared for or the caregivers to be regretful? For example, the person cared for may be less anxious about their decline if they’ve had a chance to reminisce and appreciate what they have done in their life. There may also be things the person cared for and caregivers need to say to each other — hopes, instructions, confessions, forgiving, reconciling.

Perhaps. But, alternatively, the person cared for may need to reminisce only if that was what would regularly happen in conversation anyway, that is, before illness entered the picture.  People could decide to say the needed things as part of living, without waiting for illness to move them into roles of person cared for or caregiver. Indeed, that’s one thing that the person cared for would like to envision in the future — before as well as after they are dead.

Seeing that living under constraints can be well supported is a significant lesson for anyone who lives past the death of the person cared for — it is possible to live under constraints.

(This post was not made public at first because it seemed too definite, too sure about the generality of its view of caring for someone “living under constraints.”  Please read it as one facet of a crystal that continues to shift its shape.)

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About Peter J. Taylor
Peter Taylor is a Professor at the University of Massachusetts Boston where he teaches and directs undergraduate and graduate programs on critical thinking, reflective practice, and science-in-society. His research and writing focuses on the complexity of environmental and health sciences in their social context, incl. Unruly Complexity: Ecology, Interpretation, Engagement (U. Chicago Press, 2005) and Nature-nurture? No (2014, http://bit.ly/NNN2014). On reflective practice, see Taking Yourself Seriously: Processes of Research & Engagement (with J. Szteiter, 2012, http://bit.ly/TYS2012).

2 Responses to Living under constraints, less emphasis on death and dying

  1. Something not addressed in this thought-piece is that one constraint that a severely ill person lives under is that there may be no hope for recovery from the illness, for returning to a life without constraints. Looking ahead to death is to be released from that and from the expectation that the person cared for feels of having to continue to do the hard work needed to live with constraints. So, if the person cared for has those feelings, then it makes sense for caregivers to be with them in referring to death, not simply living with constraints.

  2. Pingback: Learning from being “a living and dying thing, a limited thing..” | Unsettled

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