As a pastor, I have accompanied people through the many stages of aging, caregiving, and end of life. But it’s different when it is your own family and your own parents. I turned to a couple of books over my winter break as I sought to help my parents navigate some new life decisions. The books were so helpful, I wanted to share them with you.
“Being Mortal” by Dr. Atul Gawande is an artfully written book about what the medical profession can and cannot provide to people as they age. Gawande shares lots of helpful information, such as the criteria health professionals use to assess whether or not an individual can live independently. He writes:
“If you cannot, without assistance, use the toilet, eat, dress, bathe, groom, get out of bed, get out of a chair, and walk –the eight “Activities of Daily Living”—then you lack the capacity for basic physical independence. If you cannot shop for yourself, prepare your own food, maintain your housekeeping, do your laundry, manage your medications, make phone calls, travel on your own, and handle your finances—the eight “Independent Activities of Daily Living”—then you lack the capacity to live safely on your own.
Discerning when you or your loved one needs to transition away from independent living is a difficult and emotionally heavy decision. Having the information Guwande provides can help families navigate this inevitable life transition.
Beyond basic healthcare information, though, I most enjoyed reading Guwande’s account of the history of elder care in our country. In 1991 Dr. Bill Thomas, a curious and creative physician who, in his desire to do something different, left a position as a emergency room doctor to become the medical director of a nursing home in upstate New York. Within this nursing home Thomas saw despair in every room. The residents were devoid of spirit and energy and he wanted to do something about it. He decided the missing ingredient in the nursing home of eighty severely disabled elderly residents was life itself. So Thomas applied and received a small grant for innovative ideas that would allow him to fill the nursing home with life–plants, animals, and children. His aim was to attack what he called the three plagues of nursing home existence: boredom, loneliness, and helplessness. They put plants in every room. They tore up the lawn and put in vegetable and flower gardens. They moved in two dogs and four cats and a parakeet for every resident’s room. In Thomas’s words, at first it was “total pandemonium.” They didn’t know what they were doing–which was the beauty of it because everyone, residents included, had to drop their guard and pitch in to help. In all the chaos, life returned to the home. Of the experiment Guwande wrote, “People who had been completely withdrawn and non ambulatory started coming to the nurses’ station and saying, ‘I’ll take the dog for a walk.’ The lights turned back on in people’s eyes.” Thomas named the experiment the “Eden Alternative.”
From this experiment, Thomas went on to develop a new home for the elderly called a “Green House.” This new model of nursing home was built to meet all the government regulations for nursing care in order to qualify for public nursing home payments. Thomas did not want them to cost more than other nursing homes. But these homes felt like homes, not institutions. Each Green House is small (no more than twelve residents) and communal. Residents have their own room built around a large, comfy living room with a long table where dinners are served family style. The kitchen is staffed so residents can eat whenever they want–just as they would at home. Residents in the Green House have the autonomy to set their own sleeping, eating, and social schedules. I recently visited a Green House with my parents. It was unlike any nursing home I had ever visited. The staff were proud to show off their home. They knew they were offering a good thing.
The second book I read over break provides helpful information for a family when you approach the end of life. “Hard Choices for Loving People: CPR, Feeding Tubes, Palliative Care, Comfort Measures, and the Patient with a Serious Illness” is written by a hospital and Hospice chaplain, Hank Dunn. First, don’t let the title deceive you. This is a short book and a quick read. Even with my two young children clamoring around during Christmas vacation, I read this book easily in two days.
Dunn covers a lot of medical information, such as the purpose and function of CPR, feeding tubes, ventilators, and why end stage patients may choose to receive or deny these treatments. What I appreciated most about Dunn’s book, though, was his insight as a chaplain into the emotional and spiritual reasons for decisions a family makes at the end of life. Dunn writes:
“In my more than three decades as a chaplain at a nursing home, a hospice, and a hospital, I have been at the bedsides of many seriously ill patients. I have discussed these treatment choices with their families in the halls outside the patients’ rooms. This first-hand experience adds as much value to the content of this book as the medical research upon which it is based.
I am convinced that what really makes these decisions “hard choices” has little to do with the medical, legal, ethical, or moral aspects of the decision process. The real struggles are emotional and spiritual. People wrestle with letting go and letting be. These are decisions of the heart, not just the head.”
If you are facing such decisions of the heart and head, I recommend both these books as wise companions for the journey.