by - Julie Fleming
I recently read an article titled How Americans’ refusal to talk about death hurts the elderly. It’s a difficult article to read, in part because it points of that although lifespan has increased significantly over the last 100 years, end of life looks very different than it used to. Before the recent medical advances, at a certain age, illness or injury brought on a fairly quick death. Now, we live longer but we also linger longer, in ways that often reduce autonomy and the send of self.
It’s important to ask our parents (and our peers) what healthcare and lifestyle they would want at an advanced age, in the face of a terminal illness that might be or include dementia, to address a potentially curable disease if the treatment would cause greatdiscomfort. Different people have different standards about quality of life, and the only way we’ll know is by asking.
But those discussion are difficult — maybe even terrifying to initiate — and so decision points often arise without the benefit of those conversations. Then what? Quality of life suffers, depending on your definition of quality of life.
“Living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”
Most of us look at nursing homes — with their scheduled meals, constant supervision, adult diapers, wheelchair-bound residents, and depressing bingo nights and we think: I do not want that. I do not want to give up control over my own life, my ability to see the people I want to see and do the things I want to do. I do not want to live a life where I can’t dress myself, where I’m not allowed to feed myself, where I’m barred from living any semblance of the life that I live right now.
And yet, nursing homes are full. Adult children work hard to keep their parents safe, and society at large acknowledges that as right and proper. And so it is — few people, if any, would argue that we don’t have a duty ensure that our aging parents receive the care they need.
The article includes a game-changing thought:
[Author Atul] Gawande speaks with Keren Wilson, the woman who opened the country’s first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can’t ever look at the issue in the same way again. “We want autonomy for ourselves and safety for those we love,” she says.
. . .
It’s just that grown children and their elderly parents often have conflicting views of what matters at the end of life. Children often want every precaution taken to prevent injuries and falls. The elderly often want to live as autonomous a life as they can, even if it entails more risk.
I know this to be true. My father loved to walk in our neighborhood, and the neighborhood is well-traveled and safe. A couple of years after his diagnosis, I started to worry that he might get lost, and so I insisted that he walk with me or someone else. He balked, no doubt wanting his privacy and independence. And so I found a tracking device that I could slip into his pocket and watch his progress on my phone in real-time. I’d tested the product and found it to be very good: I could see on the map exactly where it was, so I’d know if my dad wandered and I’d know where to find him. Ah, safety.
On June 14, 2014, my dad wanted to take a walk alone. I was worried, but I knew that he hated being stuck in the house, and on that day he wouldn’t even consider letting me walk with him. We’d argued about it for a few days, and on June 14, I gave him a hug and slipped the tracker in his pocket, then held my breath as he went for a walk. I had told my friends that the benefit of letting him be outside where he could grab a cup of coffee or a sandwich and be along with his thoughts was worth the risk, that I knew the dangers and knew that the benefit to him far outweighed them. On June 14, my dad fell while he was out walking, and that fall precipitated a 17-day hospital stay. I didn’t think he would survive, but he did. He required 24-hour care after that and has not been able to leave the house alone again, something that angered him greatly. He suffered a literal fall from independence. And as I sat by his bed day after day in ICU, I wondered if I had made the right decision.
Reading the article and finding the quote weighing autonomy against safety has helped me to answer that question. My dad has always been fiercely independent, and being trapped at home when he could have gone out would have been a metaphorical death to him. As awful as the result was, I’m glad that he had so many of the walks he loved. My gut led me to the right decision. And as often as I’ve come back to it and second-guessed myself, I know his autonomy mattered more than the risk of a fall. Would I feel the same if he’d died? I’m glad I don’t know. This, of course, isn’t to suggest that there’s no guilt (I suppose I’ll always feel regret and guilt about how June 14 went down), but I know I made the decisions that my dad would have made if he could have understood the risks and rewards.
But that’s my dad, and that’s me. That might or might not be you and your parent. Do you know what you parent wants? Can you weigh autonomy vs. safety and feel confident in the decisions you make as a result? Have you had the conversations that will guide those decisions? If not and if your parent is still cognitively able, have the conversations now. Today. Don’t wait. If you missed the opportunity, think about how your parent lived when all of the choices were open to him or her, and use that knowledge to guide your decisions.
It isn’t easy, but that (in my view) is our real duty to our parents: to help them live as much of the life they want, the way they want, as long as they can.
by Julie Fleming
One of the biggest mistakes I made was not knowing exactly what kind of medical care my father would want. Worse yet, I thought I’d done it right. I’ll tell you more in the video, but here’s the spoiler: depending on what happens with your parent, an advance directive that tells you what to do if your parent is physically incapacitated may not give you the information you need.
by Julie Fleming
A late-night video discussing how to make decisions as an Alzheimer’s caregiver: ask yourself, what is the next right step?
by - Julie Fleming
About two years ago, I put a camera in my dad’s bedroom so I could see what he’s doing. Spying! Intrusive! Unthinkable! Except… It’s been a lifesaver, probably literally.
When you’re an Alzheimer’s caregiver, you’ll face unthinkable decisions more often than you could ever have dreamed. Here’s how you can make those decisions and live with them.
Author: Julie Fleming
Julie has been providing love & care for her father, who was diagnosed with Alzheimer's Disease in the fall of 2011. And she's had to learn it all the hard way. Sound familiar?