September 2022 Newsletter | Lessons from Hamlet
My mission is to be the first woman in 4 generations to not develop Alzheimer’s Disease (AD). On my journey of discovering ways to mitigate my risk, I pass this information on to you in this Brain-Body-Health (BBH) Newsletter.
“To die, to sleep; to sleep, perchance to dream: Ay, there’s the rub; for in that sleep of death what dreams may come.”
—Hamlet
LESSONS FROM HAMLET
With Shakespeare’s plays and all good books, there is an introduction, plot, and conclusion, artfully woven with characters, conflict, and resolution. In the story of Alzheimer’s Disease (AD), we often find the focus on the introduction and plot, how to prevent this terrible disease from happening and what to do when it starts. There has been less information on how to face the later years of dementia, maybe because we’d rather hide and avoid the pain altogether.
It is our unlikely hero Hamlet who questions the value of life beginning with the famous lines, “To be or not to be”. If Shakespeare were alive today, his fearful and tortured soul of a prince could easily stand in for the 55 million people worldwide facing this devastating disease. In my mind he is the hero taking our hand, helping us see, feel, and touch the reality of deep-seated pain. In the book, “In Love: A Memoir of Love and Loss”, the author Amy Bloom defies the gravitational pull of denial and fear to tackle Hamlet’s existential question, ‘When is enough, enough?’ It is an account of the author’s attempt to honor her husband’s wish to ‘die while standing, rather than on his knees'. It is a call begging us not to avoid the question, what if dementia happened to you? It reminds me of Mary Oliver’s last line in the poem The Summer Day, ‘Tell me, what is it you plan to do with your one wild and precious life.’ I would add the words… and this one precious death.
AD introduces itself 10-20 years before actual symptoms of cognitive impairment manifest. The plot of the disease thickens as we witness symptoms of dementia develop marked by memory, personality, and behavioral changes that make living with the disease extraordinarily challenging for everyone concerned. The conclusion, the slow death, can also take years, leaving most of us, at least the reported 95% or more of us, wanting the story to end before the actual final act of death. Unfortunately, the handful of states with “right to die” laws, do not apply for AD or dementia. Prolonged by medical interventions, medications, and a lack of frank conversations about alternatives, we are left without a compass to navigate the final chapter of life. However, we don’t have to miss our last soliloquy. We can create the death we want simply by using our voices. Here’s the rub; it is paramount to start the conversation before symptoms of dementia develop.
LESSONS FROM THE HEART
In a class I took recently on TRUST through REN XUE, a question arose on “how to trust when one is on our deathbed”. The teacher wisely stated that leading a good life is the answer to having a good death. Anyone can do it, anytime. Here are the practices:
Don’t let unfinished things continue. Resolve all questions, anger, and resentment.
Forgive everyone and everything including yourself.
Say and give yourself and others love and all good things.
Make every day a meaningful, special day, so you feel completion.
Show respect and gratitude to loved ones and everyone.
Trust that by accomplishing all these things you will have a calm transition at the moment of death.
In the last year of our mother’s life, she lost many words but she was still able to whisper the first two parts of this prayer for the dying up until the very last. I have no reference for it. If you find one let me know your results.
COMFORT IN DYING PRACTICE
1) Thank you; 2) I Love You: 3) I forgive you; 4) Please forgive me; 5) Goodbye.
LESSONS FROM COACHING
Our mother thought she had done all the preparation needed for death. Long before dementia arrived, she had her black leather-bound book with all the appropriate papers; advanced directive, designated health care representative, Power of Attorney, will, with named beneficiaries, and declared charities. Several times she went over the contents of this book with family members so that we understood her end-of-life wishes. She thought this clear. She thought this was enough. It wasn’t. As I came to learn, especially with AD and dementia, we had neglected important conversations. I wish we would have discussed these areas before dementia set in and made it impossible.
Voluntary Stopping Eating and Drinking (VSED) options
What to do if an infection occurred such as a urinary tract infection (UTI)
Assistance with dying possibilities at Dignitas, in Switzerland.
When the time came to decide on treatment of a UTI (and it did several times) thankfully our family elected to provide comfort care with pain medications, knowing the infection could worsen and hasten her death. It was the right decision for us and Mom. Infection may be a good way to die.
Many people are dealing with the slow unraveling of AD and dementia, including our family. Despite the challenges faced, this disease continues to be a teacher keeping me on a path toward optimal health and ultimately a peaceful, planned end of life. For this, I am grateful for its teachings.
LESSONS FROM LIFE: Resources for End-Of-Life conversations
My End-of-Life Decisions: An Advance Planning Guide and Toolkit from Compassion & Choices.
10 Things every family should do upon receiving a diagnosis of dementia.
Two stories of loving families supporting each other through VSED; Marcia Sloane, Mendocino County resident discusses her mother’s choice in this article.
A doctor explains why infection may be a good way to die.
NPR Fresh Air interview with ‘In Love’, author Amy Bloom, well worth its 35 minutes!
Dying with dignity is a worldwide organization. More about Dignitas.
To our optimized health!
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“If you want to go FAST, go alone. If you want to go FAR, go together."
- African proverb