Multiple roles as a health caregiver

The primary caregiver for someone who has a serious illness may be one person, but that person has multiple roles.  While there is research on caregivers having multiple roles (e.g., working, looking after children, etc.), the literature that one is provided in healthcare settings does not seem to discuss the different caregiving-related roles or the challenge of moving between roles that call for a different kind of presence and attention.

Medical

1.  Care in the present, especially pain management.  (Includes learning from homecare visitors to do care well when they are not around.)

2.  Participate in medical decision making–conversations, explorations, debriefing after new information, medical advocacy (especially when in hospital).

3.  Preparing for the dying process, which includes conversations in advance about expectations of the caregiver when the medical takes centerstage.

Living

4. Bringing life, projects, and people’s news, with their spirit of continuing into the future, into the day to day.

5.  Recollecting and savoring what has been lived, together and separately.

6.  “Before I die” (i.e., helping get affairs in order, having the conversations, making the trips, etc. that the ill person wants and that the caregiver might regret not having made possible).

7.  Making/practicing changes that the ill person would like to imagine continuing in the future.

Facilitating and empowering others

8. Go-between (in communication with others and arranging visits, virtual as well as in person).

9. Noticing and caring for the feelings and responses of others, including taking time to be with callers and visitors, being open to unexpected, in-the-present expressions, giving thanks.

Arranging

10. Financial, legal and healthcare wishes and paperwork

11. Domestic (cooking, shopping, laundry, dog walking, snow shoveling, trash, keeping order, repairs, thinking ahead, tackling extra tasks [e.g., ice dams])

Personal

12. Self care (stay fit, sleep, eat well so as to be present in the moment, judge well, recover from slip-ups, avoid distractedness given the inevitable unmet responsibilities outside caregiving).

13.  Making space for one’s own feelings and learning (including sadness about what the ill person will miss out on seeing, “I don’t want to regret”).

14. Envisaging the future.

15. Arranging coverage for responsibilities outside caregiving and for certain caregiving tasks (e.g., under #11) so as to have space for all the roles.

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Notice that most of these roles are difficult to delegate  to others (despite the frequent offers of “let me know what I can do to help”).  One approach to the demands of multiple roles might be to try to do one thing under each role each day.  Another approach is to use quiet time before others are up for the Personal and for the Go-betweening (#8) so as to be more mindful and wholehearted in other roles during the day.

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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 Multiple roles as a health caregiver

  1. 5a. Supporting resisting saying goodbye to one’s life.
    5b. Supporting becoming prepared to say goodbye to one’s life.

  2. Pingback: Why I write now | Unsettled

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