Leading as Caregiver – It’s Complicated

Last week I wrote about Leadership, the Gift That Keeps on Giving. Several e-mails asked about the challenge of leading a health team in the role of caregiver.  Great question! A challenge of leading in a sometimes hostile confederacy of people who don’t even know they’re on a team. Same dilemma as the person who’s on the health journey plus leading when it’s not your life, but a loved one’s. Let’s make it crazier still, as caregiver, you might not want to lead, but there’s a vacuum sucking you in.

In my work life as a leader I see my role to attend to self-care of whole team, get stuff out of the team’s way so they can do their job, listen to what they need, advocate for them, keep them informed about the larger organization, set the tone and culture by example, delegate, keep things moving, plan for succession, and be trustworthy.

How does that help me as a caregiver? One thing I noticed about my mom during her last months – when alert she paid a lot of attention to the well-being of her team. As a caregiver leading that’s a challenge and maybe the most important job.  The person you’re caring for may take self-care of the rest of the team as minor desertions.  But the team can’t support unless they’re as well as possible in the midst of the stress. So I guess that the caregiver leader sets the tone of self-care by example. Getting stuff out of the way can mean helping to arrange schedules, transportation, meals, equipment, meds, and communication channels.  When my son Mike was dying, we had a weekly family call, Friday’s at 7p where we reviewed the past week’s events, next week’s schedule of appointments, needs of everyone, divvied up work and figured out who to ask for what. People often come out of the woodwork to help, but don’t know how. They can be a pain if they don’t know. Given direction they’re a blessing.

Actually, the lead can shift depending on the needs, the schedule, the energy, and the family dynamics. For example, some people are better at advocating than others. I’m not a good advocate for other people. I have other strengths. But the caregiver lead can make sure there is an advocate.  Sometimes the caregiver lead nears burn-out.  That is definitely not the time to lead.  Hand over the reins. That requires creating depth and thinking about succession planning. Also, the situation changes leadership – acute disaster versus chronic illness. Acute disaster is more seat of the pants, but foresight is possible.  It’s more likely that someone in the family will have an accident or heart attack than there be a terrorist attack. Planning is possible, but who will? With chronic illness, the team can evolve. Creating a team may be the most important early task of leader.  Are the professionals right for the individual in communication style and accessibility? It’s hard to say no, this professional, clinic, hospital, or service isn’t right. We’re cutting them loose and finding another. Maneuvering toward consensus. That’s another factor, how are decisions made?  Is there an autocrat or is it really consensus building?  What about the individual as their own leader? Temporarily or permanently the lead can change to a caregiver. How do person-centric professionals deal with caregiver leaders?

Gee, you know I’ve never thought about caregiver as leader before. This is pretty complicated. I guess trust is key-all the way.

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