Ideas. Lessons Learned, and Occasionally, Opinions
When Bill Gates pledged $100 million for research on controlling or curing Alzheimer’s disease in our lifetimes, it focused much-needed attention on this dread disease. At Corgenius, when we teach about preparing for it, signs to watch for, and protocols to follow, we often ask the audience how many have a family member affected by Alzheimer’s. Well over half of the hands in the room go up; often it’s nearly unanimous.
Statistically, 1 in 8 people aged 65 and above have Alzheimer’s disease. Every five years after the 65th birthday the chance of diagnosis doubles. Nearly half of people at age 85 have Alzheimer’s, and one of every three seniors dies with the illness. This epidemic has profound implications for all of us, and especially for financial advisors, who are charged with guiding clients through their elder years in ways that protect their best interests and their financial viability. Here are some resources to help.
For your own education: Our vote for the best recent resource is “In Pursuit of Memory: The Fight Against Alzheimer’s” by Joseph Jebelli. This British neuroscientist has carefully crafted an understandable and comprehensive examination of the history of the disease, causes and characteristics, past and current research, and currently available treatment options. He details the major drug testing failures in the past several years, but ends with hope that in 10 years we reduce Alzheimer’s to a manageable chronic disease like diabetes rather than the debilitating fatal illness is currently is. If you want the best education on the subject and if you appreciated “The Emperor of All Maladies” (which was published in 2010 and examined cancer in the same way), this book is for you.
For your clients with a diagnosis in the family: “The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease, Related Dementias, and Memory Loss” by Nancy Mace and Peter Rabins is a comprehensive listing of what to expect from someone with Alzheimer’s disease along with a wealth of information, tips, skills, and language. The authors incorporate humor, compassion, and realism as they help caregivers and family members cope with the progression of cognitive and physical diminishment while maintaining as much communication and life as possible. Give it to clients and their families as a reliable and highly practical guide.
For everyone: The Alzheimer’s Association. This dedicated organization offers a wealth of resources and services for anyone concerned about or affected by Alzheimer’s disease. They provide in-home care consults, tracking programs for those who wander, free brochures you can provide in your office, a trial match so clients or their family members can be enrolled in appropriate clinical trials, and more. Check out what your local chapter has to offer.
Let me be clear at the outset: it was Terrance's prerogative to make his end-of-life decisions as he saw fit. It was his prerogative to include his wife Amanda in those decisions apparently as co-equal partner during the long final chapter of his life. With that firmly in mind, let's consider what she has to say about that journey.
In this Ted Talk film (“We need a heroic narrative of death”, October 15, 2013), Amanda Bennett is a fine story teller, occasionally poetic in her own voice and concluding with a quote from and for the ages. There are nuggets of utility in here and her final thesis -- there is a way to have a courageous and graceful goodbye -- is imperative to absorb. Her narrative has an almost connect-a-quote corniness about it despite its obviously heartfelt and sincerely sorrowful nature. However, because most of us know that a long and gradual decline is how we will die, Ms. Bennett's notion of "hope” is flawed, despite some utility.
She says "hope is part of our DNA as humans" but inaccurately and unhelpfully conflates acceptance of her husband’s approaching death with "you're prohibiting me from hoping." Her statement, "it's not a bug, it's a feature," is an intellectual sleight of hand that serves no one because she and her husband were, in fact, in profound denial that Terrance would soon die until the final six days of his life.
Again she says, "[I hoped], you might say irrationally, that I could keep him alive forever." I do say "irrationally" because hoping for what one can reasonably know is impossible is denial. That circle can't be squared. Although Bennett insists she was “redefining hope", in reality she kept extending a singular definition of hope (in this case a cure) until it was long-past possible. There is nothing in her narrative to suggest she was "redefining" hope.
She continues by asserting that "what the experts call denial I call hope." False. Once again intellectual and emotional sleight of hand. "Redefining hope" actually means that hope exists until we take our last breath or until our loved one takes her last breath. But, and this is the necessary and essential notion, hope changes. Initially we hope for a cure. Then, when we know that a cure is impossible, we hope to live until our daughter's wedding or our trip to Norway is complete or we finish painting the boat, or . Then, when that hope is fulfilled, or becomes impossible to realize, our hopes change again, until the final hope is to die in the presence of our most treasured loved ones in peace and in as little pain as possible.
That is what redefining hope looks like.
Here is one more example of the sleight of hand she practiced on herself: She claims "our system isn't built to accommodate it [hope and a graceful goodbye]." Actually, there were systemic accommodations available for Terrance and Amanda and they proactively chose to reject the most obvious one, the services of hospice. That's a textbook, Brittanica-grade example of denial.
Amanda and Terrance's correct response to his oncologist's assertion that "better days are ahead" was "I'll discuss that with my rabbi or priest or spiritual leader. As for you, medical profession, tell me the truth, please. Do so with warmth, compassion, humility, and sorrow for me and what you cannot achieve, but just do it."
Indicting an entire group of people is seldom efficacious and never fair but for expediency I do so here: The medical profession is flagrantly wrong to use phrases like "there's nothing more we can do for you” (the dying person) because there is always more we can do for a dying person. It may be true that there is nothing we can medically do but there is always something we can do to achieve Ms. Bennett's goal for each of us "… bid her farewell the Alexandria you are losing."