Bacon on the Bookshelf

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Guest Post: Eleanor Wells on Living a Good Life to the Very End (Being Mortal, by Atul Gawande)

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unnamed-1It did take Eleanor Brakefield Wells some time to come back home: 34 years, to be precise.

She was born in Nashville at Baptist Hospital when her father, Dr. James Brakefield, was a medical intern there.  She attended Woodmont Elementary, West End Junior High, and St. Bernard Academy, leaving for Samford University in 1975 after graduation.  It would be 2009 before she and her husband Chris made Nashville home again.  She’s so grateful for the people and places in between – a wonderful community of friends in Roanoke, Virginia, a thriving surgical practice for Chris, a nursing career for herself before raising their two sons – but she’s so happy to be back.

I first met Eleanor a few years ago while helping with a fundraiser for The Next Door, a local organization serving women struggling with substance abuse and/or transitioning from prison back into society.  Eleanor worked as fundraising coordinator, and I liked her right away.  She was cheerful, organized, and efficient; she was also one of those lovely Southern women, immaculately put together, with grace, charm, and warmth to spare.

Eleanor continues to volunteer regularly and passionately with The Next Door, but she resigned as an employee because of the caregiving needs of her own family.  She is a wife, mother and grandmother who is also helping care for her own and her husband’s aging parents.  It is in many ways a challenging period of life.

She relives stress at TNB Fitness.  “For the first time, I am really enjoying my workout,” she says.  “I am working on being strong while maintaining flexibility and balance as I age.”  She and her husband also took up golf this spring.  “What a hard game!” she notes (perhaps not the first to express this sentiment).  “We have yet to venture off the driving range, but our goal is to play at least one round on the course by the end of the summer.”

Any season – rain or shine – she loves to sit on her screened porch, reading a book, taking a nap, maybe watching a little HGTV or Food Network while enjoying a peanut M&M.  She recently finished reading Being Mortal, by Atul Gawande – a book that has been mentioned to me over and over – and today I’m so happy for Eleanor to share her thoughts on it.  

91E6exaOufLFrom Eleanor:

October 25, 2014, the phone rang at 3am:  “His breathing has changed, your mom is scared, you need to come.”  My father-in-law (FIL) was nearing the end of his life.  Thankfully, my in-laws had moved to Nashville two years prior to this call so that we could help care for them.  We knew this day was quickly approaching, but we were so sad to tell someone we loved good-bye.

The decision for them to move came as I sat in a physician’s examining room with my mother-in-law.  She was quite ill and was being admitted to the hospital.  She had been caring for my FIL without help and her own health was suffering as a result.  She asked me what I thought she should be learning from her situation.

My husband, Chris, and I had been increasingly aware that their living situation was becoming unsustainable.  Yet, how to approach them about a move was of great concern. S he now seemed ready to face the reality that she could no longer be her husband’s sole caregiver – they needed to be close to family.  So I replied, “It’s time for a change.”

My in-laws had always lived independently, but advancing age and the challenges that came with my FIL’s advancing Alzheimer’s disease was making their lives difficult and independence impossible.  With no family close by, a move to Nashville seemed the only option.  Within six weeks, an assisted-living apartment had been secured, belongings had been sorted and packed, and they moved away from their beloved south Alabama – the place they were born and had always lived.  Yet at the same time, my own life was changing radically, as Chris and I took on the burden/joy/terror/responsibility of caring for our aging parents.

Over the ensuing three years, I think we have encountered it all.  From multiple doctor visits, rapidly decreasing quality of life, panicked phone calls, and interrupted vacations to the joys of becoming the daughter my in-laws never had and loving them in very personal ways, life for all of us looked very different than it did before.  In the tornado of all this change and through the hundreds of conversations with other friends in the same situation, we wondered where the handbook was for this stage of life.

So after reading a review in the Wall Street Journal of Atul Gawande’s book, Being Mortal, I was instantly intrigued.  It was soon after my FIL’s passing that I picked up the book to read, and I found I was not ready.  The decisions we had so recently made about his last days were too close and too raw.  The book hit too close to home.

Several months later, however, I was ready.  I read it very quickly because every page spoke to something we had faced in our own family.  I truly believe this book is a must read as many of us watch those we love age, and as we all face our own mortality.  I regretted that I had not found this book before we tackled some of the crises and the decisions that we had to make.

In his introduction, Dr. Gawande, a surgeon at Brigham and Women’s hospital in Boston, states, “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need.”  Throughout the book, using examples of his patients, friends and family members Gawande explores the experience of aging and dying – examining the status quo and offering solutions to improve the current experience.

Our increasingly aging population is creating challenges and problems that Gawande explores.  Housing issues, arising from the fact that most of us will spend significant periods of our lives unable to live independently are a critical problem that the book addresses. What kind of environment would we want to live in as we become less independent?

As he described how living arrangements are often selected, I could relate.  Both my parents and my in-laws have moved from their homes and into retirement communities in recent years.  Gawande found that senior communities are built more for the children than the elderly -beautifully decorated, lots of choices for activities, outings, special events, etc.  The elderly, however, are more concerned with maintaining their autonomy.

In our family, my parents chose an independent apartment with care provided as their needs changed.  My in-laws needed more help right away so an assisted living community is what they sought.  Maintaining their standard of living balanced with what they could afford and how they wanted to live made the decision difficult.  And this doesn’t even begin to address the process of sorting and the letting go of a lifetime of belongings.

Maintaining independence with support was paramount in both of our parents’ decision.  Gawande notes that balancing the needs of safety and the needs of independence can be a challenge.  We children want to ensure our parents are safe yet our parents are willing to sacrifice their safety and survival for the sake of freedom and purposeful living.  Conflicts can and do arise from these varying perspectives.  They certainly have in our family.  Yet, it has to be noted that increased independence definitely increases the sense of quality of life and correlates to a better end of life experience.

How we die is also discussed in the book. Gawande outlines how previously, an illness would strike and death would ensue, like falling off a cliff. With progress in medicine, treatment of disease can prolong the descent to death.  Instead of a dramatic drop, treatment can create something like a hilly road, times of decline followed by improvement.  Death now often comes from the accumulating problems of one’s bodily systems – after a long, slow fade.  We certainly experienced that with my FIL.  His Alzheimer’s had been a part of his life for over 10 years and each year brought further decline –slow and steady.  Making medical decisions became increasing more difficult as we had to weigh his physical condition with his mental status.

Through the telling of his own experience with the cancer diagnosis, treatment decisions and ultimately the death of his own father, Gawande shares things he learned, questions he asked, and issues he confronted concerning how and where we die, and what choices we have with our death.  Medicine offers much to extend life but the difficult question is when and how do we stop treatment.  People with serious illness have priorities besides simply prolonging their lives yet it is rare that they are asked what those priorities are.  Gawande poses the question, “How can we build a medical system that will actually help people achieve what is important to them at the end of their lives?”

We are in a time of transition.  The current institutionalized version of aging and death is breaking down, but the new norm has not been established.  Establishing this new norm will take courage, a topic Gawande addresses in the last chapter – the courage to face our mortality, the courage to seek out what is to be feared and what is to be hoped for and finally the courage to act on the truth that we find.

Reading this book has impacted my life. It has given me confidence in decisions we have made and are making with our parents while challenging me to think more from the perspective of our parents. It has provided questions that I need to ask of our three remaining parents, conversations my husband and I need to have with each other and our adult children, and conversations I desire to have with others in the same stage of life we are in. Gawande has written an important book – one that would highly recommend to anyone as, “Our ultimate goal, after all, is not a good death but a good life to the very end.”

15 Comments

  1. What a clear and thoughtful review of a book I’m going to pick up right away. Thank you, Eleanor!

  2. I have this on my bedside right now at my husband’s recommendation. Such an important topic, and Gawande is a great writer. Thanks for this Eleanor & Jennifer!

    • It is such a good and hopeful thing that this book is at the center of so many conversations today. I’m glad you’ve got it on the nightstand table! Thank you for your comment, Jessica. xo

  3. very timely. we will order this book. thanks for the review.

  4. I read this book last month and have recommended it highly to family and friends.

  5. My good friend Wendy Martin just recommended this read to me – I am currently in the middle of all of this with my 101 year old grandmother and my parents! Can’t wait to read it!

  6. Eleanor and Jennifer,
    Thanks for such a thoughtful discussion of caregiving and for suggesting this book. I will order a copy for myself and each of my brothers.

  7. Eleanor,
    Thank you for sharing your own experiences in the life of your special family members. This is such an important topic and I look forward to reading Gawande’s book.

  8. Forgive my lack of response to everyone’s comments. We have been out of town and basically off the grid. Thank you for your kind words and your interest in this topic. My hope is that we can learn from each other as we care for those we love and that the conversation will continue in other ways and forums.

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