There are the people who are members of your aphasia squad, who have a clearly defined purpose. They are the family, friends, speech therapists, doctors, or nurses who are helping you reach your goals. But what about the hidden members of your squad? The people who pop up and play a role in your recovery or during an ongoing situation such as primary progressive aphasia. What about the neighbour who takes in your mail or the community member who makes you a meal?
Joe Biden talks about circles of support in his book, Promise Me, Dad, which is the latest installment of our online book club. We are focusing solely on the parts of the book that cover aphasia and caregiving.
The outside support circle is the widest and least defined circle. These are the people who step up and help out, sometimes numerous times and other times for just a few moments.
On page 151, Biden talks about how the Secret Service agents were there to protect them. But they also played roles that were not in their job description when it came to his son’s health.
I occasionally heard one of the agents say that they were here to protect more than our bodies; they were determined to protect our dignity. And I had become increasingly aware of that in the last few months, especially during our recent family outings, when agents would surreptitiously step in front of citizen photographers to make sure they didn’t get any pictures of Beau’s obvious physical decline. Or how they would hang back at the top of the trail in the Tetons so Beau, Hunter, and I could have a moment of privacy, just the three of us, at the top of a mountain.
They are small moments, but they’re also important moments for the family because it frees them to concentrate on Beau rather than the outside world. Biden also discusses on page 152 the people outside the medical team the family relies on at the hospital:
And it wasn’t just Dr. Yung and Dr. Sawaya. The hospital had a special envoy who always made sure Beau got in and out of all his tests and procedures with minimal hassle and absolute privacy.
The best way to think about this outside ring of support is that they are there to support those inner caregivers. They find the gaps and fill them. Most people have more allies than they know, they just need to figure out how to deploy them.
Then there is the inner circle; the people who have direct contact and a clearly defined role. Biden describes his other son’s role on page 153: “Hunter Biden was the crucial beam in Beau’s support structure.” Hunter was Beau’s confidante, hand-holder, and advice giver. He was the person that Beau knew always had his back.
There are also Beau’s wife and children, his sister and his siblings’ spouses. There are Joe and Jill, countless friends, and extended family members. There are also doctors, nurses, and speech therapists who helped Beau along the way. Biden expresses on page 152: “Jill and I felt better seeing how many reinforcements our son had here at Anderson.”
Know Your Circles
The importance of support can’t be understated. As Biden writes on page 180:
I also knew, having watched Beau, the kind of sheer guts required to wage an uphill and scary battle against a vicious and remorseless foe. Knew how important it was to have real support.
Take some time today to define your support circles. Who is in your inner circle, and who can you draw into your outer circle?
Image: Neil Thomas via Unsplash