Most of us avoid talking about death. The topic is not, well, the most pleasant one to address because, inevitably, it means a discussion about what happens before we breathe our last breath. Dying. That’s the part of the conversation where you say, “I hope I go in my sleep,” or “I hope it’s quick and painless.”

Since we can’t run away from dying or lock it up in a closet – sorry – I thought I’d share what Atul Gawande has to say about it in his latest book, Being Mortal. He takes an anxiety-producing topic and fearlessly broaches it through mind-boggling research and affecting stories. Though, I should warn you, the book is not emotionally easy to read. The stories come one after another: Alice’s frequent falls and car accident, Bella’s descent into blindness, Ruth’s stroke, Sarah’s lung cancer.

For much of history, death just happened. People literally dropped dead: you had a sore throat, and the next day you died. Our bodies didn’t “crumble” over time like they do now, thanks to advances in medical technology (28).  We have antibiotics, breathing machines, intravenous fluids, dialysis, chemotherapy. There is always one more drug, one more experimental therapy a physician can pull out of the medicine cabinet to keep you alive, even if it’s only for a few more weeks. Physicians, especially surgeons like Gawande, are trained to fix people. But, in doing so, are we causing more harm than good? Are we denying the aged, and terminally ill, sought after comfort?

But some people are willing to do anything – surgery, take pills – with the hope of maintaining independence, but, as Gawande says, “what do we do when it can no longer be sustained (23)?” Perhaps your parent has have lived on her own for the past fifty years, tending the garden, walking the dog, driving to the grocery store, and so on. But now, due to poor balance and a broken hip (FYI: about 350,00 Americans fall and break a hip every year), she can no longer engage in any of those activities. She can no longer safely cook her own meals or walk to the bathroom. She needs someone to be with her, 24/7. How do we keep the aging population safe while, at the same time, foster their independence? Who will be the one to care for our frail grandparents, parents, or spouses? These are just a few of the difficult questions that lack a single-dose answer.

Through interviews with patients, his dying father, other physicians, and proponents of institutional change, Gawande, and readers, learn that the “sustenance of the soul” is possible through imagination: community co-op living, mobile teams to check in on the elderly, and greenhouse living – long-term care facilities designed to look like a home (128). He debunks the myths of hospice – to do nothing and “let nature take its course (160).” If anything, hospice allows the aged and ill to live a bit longer in their own homes by fostering patient dignity and autonomy.

How all of this comes to fruition may not sound so simple, but Gawande guides us, with a cheat-sheet of questions to ask those who are dying:

1)   What do you understand about your illness, or prognosis?

2)   What are your fears? Goals?

3)   What do you care about?

4)   Given the circumstances, what trade-offs are you willing to make?

5)   If your health deteriorates, how would you like to spend your time, and whom do you want to make decisions for you?

Medicine is not only about repairing people’s hearts or fixing their broken bones.  It’s about maintaining an individual’s well being, emotionally and mentally. It’s about helping human beings live meaningfully by encouraging them to be the author’s of their own lives, up until the very last sentence.

Gawande, Atul. Being Mortal. New York: Metropolitan Books. 2014. Print.

You might have suffered a concussion playing football as a high school or college student, and because you felt nauseous and dizzy, you rested for a few days, just as your doctor advised. Those few days passed and you felt like your old self again, ready to return to the field.

Fifty years later, your family is concerned about your memory: you don’t know what month it is, and you can’t recall the conversation you had with your son two hours earlier. Your wife eventually takes you to a neurologist, who diagnosis you with Alzheimer’s disease. You’re surprised. After all, you have no family history of Alzheimer’s, and you’ve worked hard to keep your brain sharp: you’ve been an avid reader and crossword puzzle fanatic for years. The neurologist must be wrong, you think. Or maybe you haven’t considered the concussion you sustained half a century earlier.

A brain injury is a risk factor for Alzheimer’s. It’s possible that all it takes is one concussion. On autopsy, an Alzheimer’s brain reveals beta amyloid deposits – proteins that collect between nerve cells. Tau, tangled fibers of proteins, collects within the cells. As we age, it’s not unusual to expect protein build up within our brains, but in Alzheimer’s, they accrue in greater amounts, impeding communication between nerve cells, causing memory impairment and personality changes.

In autopsy studies of those who have died in the acute phase of a traumatic brain injury, researchers have found amyloid deposits in thirty percent of people, including children, and increased tau levels in the spinal fluid of those who died of a severe traumatic brain injury.

But studies have proven that amyloid is a mysterious protein as it relates to head trauma. Researchers have learned that individuals with mild cognitive deficits, who reported a history of brain trauma, showed brain changes consistent with Alzheimer’s. But those with no cognitive impairment, who also reported a history of brain trauma, did not show any changes.

So, at least there is hope – if you have suffered a brain injury, maybe you’ll be among the lucky and will escape the sticky plaques and fibrous tangles.

http://www.medscape.com/viewarticle/818376 http://depts.washington.edu/adrcweb/research-101/traumatic-brain-injury/

This you tube video of 100-year-old Shirley reminiscing about her beloved husband, Moe, will make you cry, smile, and laugh. But, most of all, it will leave you with poignant words to cherish.

Pass the tissue, please.

http://www.youtube.com/watch?v=c8TjO2FGnao

Startling statistics from the Alzheimer’s Association:

Impact on Caregivers

In 2013, 15.5 million family and friends provided 17.7 billion hours of unpaid care to those with Alzheimer’s and other dementias – care valued at $220.2 billion, which is nearly eight times the total revenue of McDonald’s in 2012.

More than 60 percent of Alzheimer’s and dementia caregivers are women.

All caregivers of people with Alzheimer’s – both women and men – face a devastating toll. Due to the physical and emotional burden of caregiving, Alzheimer’s and dementia caregivers had $9.3 billion in additional health care costs of their own in 2013. Nearly 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high, and more than one-third report symptoms of depression. https://www.alz.org/alzheimers_disease_facts_and_figures.asp#impact

After reading the opinion piece, “My Mother’s Keepers,” in the April 13 edition of the New York Times, I realized I’m not alone. What about you? If you think you are alone go to: http://www.nytimes.com/2014/04/13/opinion/sunday/my-mothers-keepers.html?emc=edit_th_20140413&nl=todaysheadlines&nlid=65830396

Vermont resident, Mary Ann Fuller Young recently published her first book! Here’s the press release from Champlain College of Burlington, VT:

Local author Mary Ann Fuller Young has written her first book, a memoir entitled Plainly and Simply, chronicling her journey through some of life’s most challenging hardships. Derived largely from her personal journals, the book details the difficulties Young faced when her beloved Francis was diagnosed with Alzheimer’s disease. Young does not shy from the reality of the disease, but rather reveals true insight into the daily efforts involved. Novelist and editor, Maudy Benz, comments “Young’s pithy, heart-felt prose enchants.” Readers dive into her life head on as she tackles the challenges before her and grows stronger on every page. Plainly and Simply is a tale of love and loss for any reader.

Young’s memoir is over twenty years in the making. As such, it provides valuable information about the signs and symptoms involved with early-onset Alzheimer’s. Early-onset Alzheimer’s currently affects over 200,000 people in the United States, all of them in their 40s and 50s. Told from the caregiver’s perspective, Plainly and Simply is not only touching, but revealing as well. A vast majority of men and women suffering from early onset Alzheimer’s do not realize there is a problem until long after the disease has begun affecting them. Instead, they attribute their memory slips to stress or other conflicting diagnoses. In Francis’ case, his struggles with alcoholism in his youth appeared to be the culprit.

After Francis’ diagnosis, Young reveals that the pair knew nothing about Alzheimer’s; they learned as they experienced it. Plainly and Simply details the early stages of Francis’ forgetfulness all the way through his confusion, and ultimately the lost, vacant look in his eyes. Readers join Young as she attempts to understand and care for the man that she loves as the disease progresses.

As a caregiver, Young’s perspective is invaluable. Her writing is straightforward and from the heart. Those currently dealing with Alzheimer’s disease, early-onset or otherwise, will find her honest approach to the memoir both helpful and motivating. Plainly and Simply serves as a reminder to caregivers that they are not alone in their experience and is an enlightening experience for all.

Young currently resides in South Burlington, VT. She is affiliated with Amherst Writers and Artists and has worked with this organization to develop a writing workshop called Write Time. Young attended Lasell Junior College and earned a BA in psychology from Connecticut College for Women. She also graduated from Vermont College of Fine Arts with a Masters in Nonfiction Writing.

To purchase Mary Ann’s book, go to any bookstore, or you can order it at: orderplainly@gmail.com.

In her book, No Daughter of Mine is Going to Be a Dancer, Ms. Underwood shares her story of how she persevered to fulfill her dream to perform on stage. What makes her unique is that she published her book at the age of ninety-one, proving that aging does not necessarily mean it’s time to sit back and passively watch others leap and twirl across the stage. To read more about Ms. Underwood’s courageous, and inspirational story go to The Other Paper at: http://edition.pagesuite-professional.co.uk//launch.aspx?pbid=aacd0b83-2f20-43cc-b6ae-07ca0e39d8dc.

Enjoy!