Wednesday, 6 November 2019
Care Partner Wednesday--Seize the Opportunity to Build Your Team
"It takes a village to raise a child is an African proverb which means that an entire community of people must interact with children for those children to experience and grow in a safe and healthy environment. The villagers look out for the children."1
The concept of the community participating in the raising of children is integral to African culture but seems radical and a little invasive to us. We in North America didn't consider the idea until Hilary Clinton brought it to our attention in 1996 when she published her book of that name. An interesting concept but we love our silos and tend to close and lock our front doors to anyone offering to participate in our family life.
We aren't great at community. We espouse the idea, but when it comes down to it, we resist letting others in.
The concept reaches far beyond the raising of children. We need each other for all the frightening, overwhelming scary stuff life throws at us. We need each other, and this is never truer than for care partners. It takes a team to support an elder.
Who's on your team?
1. The primary caregiver
I would define this as the one person who makes most of the care decisions. There may be several siblings and they may discuss everything, but in the end, one sibling generally takes the lead. Perhaps a husband provides care and the children give input. Or maybe the elder is cared for by others in long-term care. One person usually emerges as the place where the buck stops.
Even if they aren't giving hands-on care, the primary caregiver carries a heavy burden. Decisions regarding care are often difficult and unclear. Is this course of treatment or that drug better than another? Do the benefits outweigh the side effects? Dad starts to act in a way that's concerning. What should be the best response? Mom's emotions are all over the map. How to show compassion but keep things calmer? A wife starts to wander and a husband shouldn't be driving any more. Primary care partners face tough decisions and circumstances every day.
The primary care partner's biggest challenge is often feeling alone. Even if family members want to support, they can add to the burden through confrontation and endless discussion. Conversely, the primary care partner can become their own worst enemy by not acknowledging that they need a team. "I know my elder best and I can make the best decisions for them."
Glenda looked after her husband in their apartment. Although they had some supports in the form of occasional caregivers and housekeeping, she adamantly declared she knew best. He never left his bed and she struggled with his care. Their world shrunk as she refused to listen to advice. Eventually, the decision to move her husband to care came in spite of her, but to both their surprise, it opened a new world to them. He was put in a wheelchair and she could wheel him around. He benefitted from others who knew how to support his frail skin. It took some time, but eventually, Glenda allowed the team to support both her and her husband and their quality of life improved.
As the primary care partner, you play a key role. But without a team behind you, the pressures will overwhelm, and you will falter and burn out. There's no might or maybe--care partner stress is real and a killer. Don't say, "I should be stronger." Be wise and build your team.
Next week: The medical team.
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Care Partner Wednesday--Sieze the Opportunity to Build Your Team