Substitute Decision Makers: A lot does change overnight, every night.
On January 12, 2024, the CBC’s radio program White Coat/Black Art ran a piece on being an Attorney for Property and Personal Care for a loved one. Sometimes these roles are known as being someone’s Substitute Decision Maker. A corresponding article was trending on cbc.ca.
It tells the story of a doctor in New Brunswick thrust into managing her brother’s financial life, personal care and personal obligations, including having young family members that depend on him for support, after her brother experienced a stroke. It also tells the story of a family whose husband/father was diagnosed with ALS, and how they are currently navigating the progression of his illness.
Whenever these life events are covered in the media, I get excited and curious about how they are covered. I’m grateful that these real life, real world, real people topics receive attention. Honestly, I’m curious as to whether my first-hand experiences with these types of issues jive with the reporting and messaging.
I’d like to advance the discussion further than the article. The article is framed as a “cautionary tale” narrative. It’s the classic “this can happen to you!” scenario. As I said, I’m grateful anytime Death and Aging are given any sort of deep dive in public. However, the narrative is a disservice because it’s implying that it can only happen to the unlucky or irresponsible among us – when the reality is, Death and Aging happen to all of us. The “cautionary tale” approach lets us off the hook: “I’m responsible and my family knows what to do, so this doesn’t apply to me.”
This will happen to you
I would like to change the discussion from “This can happen to you” to “This will happen to you and everyone you know, so what are you doing about it?”
When I read the CBC article, a few quotes jumped out at me that compel me to comment from the perspective of a Conscious Estate Planner and Coda Coach.
“… she thought little of it” when asked to be her brother’s Attorney
Commentary: The quote screams of the prevailing cultural attitude that we treat our lives and the lives of others as transactions. Being someone’s voice and legal actor is not a transaction, it’s a relationship. She thought little of it… why? Because it’s common that people want to believe that if there’s something to do there will be an off-the-shelf solution to the problem. A Power of Attorney is a legal tool; it’s a piece of paper and it’s not supernatural. What happens when life needs that piece of paper to do something? We need to think BIG about it.
“Billy was the last person you’d ever expect…”
“When we were younger, it was all theoretical and abstract.”
Commentary: Expect to what…? Be a human? Be subjected to the biological reality of the fundamental insecurity of our lives? Young people don’t get sick or get into accidents? Aging and Death are theoretical, not real? These statements are evidence of the ongoing, systematic, cultural denial of Aging and Death. Aging and Death are biological functions of all living creatures on this earth. To the best of our knowledge, we humans are supposed to be the smartest of these creatures – and yet even medical doctors can deny that their healthy brother can get sick.
We don’t need to obsess, and we certainly aren’t helped by denying – so a healthy middle ground is engaging with our biological reality. These quotes are common excuses that get trotted out when people find themselves unprepared. Truly, our culture is permeated with denial and it’s up to us to fight against it by using Conscious Planning to make things a little easier for our Substitute Decision Maker.
“underestimated what’s involved”
“don’t understand the magnitude” of the role/job
Commentary: Never mind underestimating, in my experience, most people don’t even estimate what’s involved in being someone’s Substitute Decision Maker. Can you imagine taking on the responsibility of managing someone’s entire financial life (investments, real estate, business, pension, filing taxes, paying bills) and their care (appointments, treatment, comfort, recreation, housing, diet)? Does it sound like a lot of work? It is. It’s like running a business, but it’s the business of ‘being a person’. Remember that you also have your own life to manage. Why are the people in the article surprised that it’s a lot of work? Because they didn’t know any better. Why didn’t they know any better? There is an obvious lack of engagement with the biological and social realities of being a human. The faintest engagement with Aging and Death will reveal that there’s a lot to manage, communicate, coordinate and direct.
“Billy didn’t have a trusty shoe box or accordion folder with everything she’d need. He had been the only one with the account numbers, let alone the passcodes. She had to slowly approach each organization and figure out how to get access.”
Commentary: Again, this speaks to a lack of engagement with the reality of existence and the cultural practice of taking life for granted. We all need to accept that there is a high likelihood that we’re going to need someone to help us at some point in our lives, to make decisions, to be a Substitute Decision Maker, to help us live our life the way we like to live it. What are you doing to prepare these people to help us? We need to help ourselves and these people to do that – we need to document our lives. We are developing Coda for this purpose, because we all need to engage and write a few things down from time-to-time.
I am grateful when these people step forward and share their stories in the hope that it increases awareness and inspires change. To me, it’s important that the community understands that Aging and Death are not something that happens to other people or other families. All of us are going to (hopefully) experience these important life events. The reality that people are not prepared speaks to our collective failure to display responsibility and compassion.
How do things change?
- Acceptance of the biological reality of our lives and the acceptance of the responsibility that we owe to ourselves, our families and our community.
- Half an hour every season documenting important details of our lives.
- Half hour every year communicating and having a dialogue with your expected Substitute Decision Makers.
- Stop denying. Learn to accept. Embrace your responsibility. Build a habit of reflection. Write things down. Tell people.
Engage with the realities of your life.
“Let us prepare our minds as if we’d come to the very end of life. Let us postpone nothing. Let us balance life’s books each day. …The one who puts the finishing touches on their life each day is never short of time.” Lucius Annaeus Seneca (65 BC – 4 BC)