Introduction to Without Regrets
First Things First: Why I Wrote This Book
The content in this book is inspired by my family and my husband’s family: two very different families living very different scenarios and making very different choices at the end of life. Mable, my mother, was a farm woman; Isabel, David’s mother, was a Canadian aristocrat. My mother had presence of mind until the very end of her life; David’s mother had dementia for several years. My father didn’t believe much in science or medicine; David’s father was a surgeon.
David and I did not anticipate becoming responsible for the care of our aging parents. Who among us thinks of old age, dying, or closure in the middle of building a career and family? Who is clear-sighted enough to realize that as we are just beginning to hit our stride, our elders are slowing down, their biological clocks ticking away, and their health status changing?
Though our professions focus on teaching others to make healthcare decisions, we had to learn first-hand the challenges involved in helping our parents and families imagine and live the final chapters of their lives.
But as the Emmott children grew up, so our parents aged, and we spent the next decade caring for family and making decisions. The responsibilities were often overwhelming. Though our professions – I am a nurse ethicist and David is a physician – focus on teaching others to make healthcare decisions, we had to learn first-hand the challenges involved in helping our parents and families imagine and live the final chapters of their lives. Early in the experience, I began to see that other couples and most families will, sooner or later, encounter the same challenges and need to build the same expertise, though each family must find its own way.
This book grew out of my desire to share the benefits and insights that we gained along the way. We learned many lessons, from each other, from other family members and from our friends and patients who also shared their stories with us. As we continue to reflect on our experience, talk with our friends, and work with other professionals doing end-of-life planning, we realize how important it is to engage one another in this conversation. In our decade of caring, we did some things well, some things not so well. We fell down at times, but we always got back up. We tried to hold dear and respect the lives of our loved ones. We tried to accept – and help them accept – the inevitable losses that accompany extreme age and frailty, and to tread on with courage.
So this book is not about perfect solutions. I hope that by reading this book you will be better prepared than David and I were to become caregivers, companions and comforters for your loved ones. I hope that your experience with frail or dying family members or friends will not be so burdensome that you become sick or that your family comes undone. But mostly, I hope that you will learn to make decisions with and for your loved ones with confidence. When you begin to look back on this process, I hope that you will be able to do so with no regrets.
There is no way to anticipate the situations families will encounter when caring for aging parents or loved ones, or how they will respond to those encounters. No formula exists for making the decisions easy or predictable. But this book can help you work through such “stuff” – the stuff all families go through when a parent or spouse becomes frail or disabled, or loses the capacity to make his or her own decisions.
Sometimes the way forward has been anticipated, discussed or even preplanned and just needs tweaking. Sometimes the whole terrain lies unmapped before us. So what did David and I do? What should you do? I will try to unfold that in the chapters to come. First, however, I would like you to meet my mother. I can feel her presence on my shoulder, reminding me to tell you something important.
Healthcare for aging persons is only as good as it is appropriate.
Use your parents’ stories and values to guide your processes when you are making decisions for them.
A singular woman
In 1986, after fifty-four, yes fifty-four, years of marriage, my mom, Mable Clark, divorced my dad, the reverend Joe Clark. She had decided that time was running out for her. She had some things that she needed to do. A large crack appeared in the Clark family because, apparently, it was Mother’s turn to call the tune. That same year, I diapered a new baby, rode herd on two toddlers, and set up house in a better part of town as my husband David built his surgical practice. As my mother reclaimed her long-lost independence, I watched mine go down the drain. I was busy figuring out what the world expected of me, unaware that my mother had already been there and done that. I was also unaware that as she reclaimed control of her life, she would also claim control of her dying and motivate me to write about it.
Sometimes the way forward has been anticipated, discussed or even preplanned and just needs tweaking. Sometimes the whole terrain lies unmapped before us.
Mable Clark was one tough cookie – as tough as nails on the outside and gentle as a lamb on the inside. She raised ten children while fulfilling all the real and imagined duties of a minister’s wife. She smacked and switched every one of us at one time or another. I remember vividly the time I was subjected to the “go and choose your switch” routine. I had been hanging the younger ones’ diapers on the clothes line, wrinkled, and using only one clothes pin.
Another time when I was a young teen, I called her on the phone and yelled at her. “I hate you,” I told her. “I swear you never listen to me.” She drove all the way down Main Street to smack my face – almost before I could hang up the phone. Yet, only seventy-two hours later, she placed a note in the church bulletin announcing that she would be making and selling pies for the next two weeks – including coconut and banana cream pieces and fruit pies using fruit she had canned over the summer. Only she and I knew the pie money would be used to buy fabric to make a dress for me to wear to a high school event. And she told no one that the event would include dancing, something that we were strictly forbidden to do. Whenever any one of us recalls a “tough” Mable story, it is just as quickly followed by a “gentle, tender” Mable story.
In Mother’s younger days, she never rested. She was selfless and spent her life helping others. She cooked, cleaned, gardened, washed clothes, canned food, and sewed clothing and drapes, all while holding down jobs that required hard physical labor. I wonder now how she did all the things she did. She was active in the church community, tended her children, and lived with our Dad as his chosen profession dictated she should live.
Sunday mornings, I awakened before dawn to the clanging of pots and pans. Several hours later, when I finally got to the kitchen myself, the windows were always steamy. Pots of black-eye peas, new potatoes, fried okra, over-cooked pot roast, and other Sunday staples simmered on all the burners. On many Sundays, she had already fried chicken and made biscuits by 7 A.M.
She had only two dresses, and they were identical except for their color. One was blue; the other, pink. As a young girl, she let me choose the one she would wear to church on Sunday morning. We followed this routine numerous times but always pretended that it was a novel experience. Then, off to church we would go, all ten of us knowing that we could invite a friend home after church, and knowing that our friends would come. They didn’t come because we were cool or popular or had a tidy house, but because they knew my mother’s cooking and the spontaneous chaos they would enjoy at the Clark home until we were hauled back to church for the evening service.
One by one, my older siblings married and fled the constraints of Dad’s fundamentalist interpretation of the Bible – “no dancing, no shorts, no make-up, no playing cards, and no ovies” were some of the injunctions he made us follow. One-by-one, we younger kids were left behind. We lived for holidays and other occasions when our older brothers and sisters returned to shower presents and attention on Mon and the rest of us.
Mom loved her sons- and daughters-in-law as much or more than her own children. She discovered their favorite foods and included them in our lavish holiday dinners. I once asked her how she knew if her children had chosen the right spouses. She answered,”If my children like them, I like them. If my children love them, I love them.” Divorces occurred in some of these early marriages, but Mom never divorced the departing in-law. Her love and loyalty were unfailing.
In 1986, we knew things would never be the same – that’s how each of us interpreted the big divorce. Some of my siblings had experienced their own divorces; some were too busy to worry. But, worried or not, we all cried.
Mom set about discovering herself in many ways. She bought a new car and ventured to New Mexico to visit her only surviving sister. She lived in Arkansas and Oklahoma for a while, and was a home companion for elders who were only a few years older than she. She came to Kansas City and watched the Kansas City Royals play ball, and finally chose to reside in Kansas City. She made our friends her friends and even our friends’ parents became her friends. Instead of cooking for us on holidays, we cooked for her. And, over time, instead of taking care of us, we began taking care of her.
Eventually, Mom decided that she needed to move to an assisted living residence. She was very proud of her “suite.” She furnished it with a small sofa, lots of romance novels, and photographs of all her children and grandchildren. She loved getting manicures, being served three meals a day at a table with cloth napkins, playing bingo, and listening to volunteer singers perform old church hymns and country songs. She acted like a queen, and in fact, she was elected queen during the festivities on Valentine’s Day. She wore her tiara for weeks.
Her final residence was in a nursing facility where she soon became the favorite of all the nurses and aides who cared for her. She was funny and feisty and always had a smile on her face. I, on the other hand, was sad and teary eyed. It distressed me to see her living in a nursing home. “You really should come to my home and live with me,” I cried. But she would grin, look at me with her big blue eyes, and say, “I like it here. Go home.” I never knew if she was being honest or only telling me what I needed to hear.
Those of us who were part of Mom’s last twenty years received a glorious gift. We watched her spread her wings and find herself while she was still able to do so. We revisited the past with all its ups and downs and were able to say “I’m sorry.” She said, “I’m sorry, too.” And, in the final years when we told her we loved her, she always said “I love you, too.” We seldom heard these words when we were kids.
In Mom’s dying days, our family became the way it was when we were young. We rallied together and said our “goodbyes” in whatever ways we could manage. Some said their goodbyes over the phone, others were at the bedside. We sang songs with the hospice chaplain and let her grandchildren and great-grandchildren crawl on her bed. We laughed. We cried. It was hard work. It wasn’t pretty. It felt like we were delivering her into a new life as she had delivered each of us into life in this world.
On her last day, I asked to have some time alone with her. I told her that I loved her. I thanked her for teaching me how to be a good mother and to have a positive outlook on life. I told her that I didn’t really know what heaven would be like, but I knew that others were waiting there for her. I laughed and cried at the same time when I told her that Dad would be perfect in heaven, and she might even fall in love with him again!
As I prepared my mother’s eulogy, it was undeniable that Mable Clark had sacrificed much over the years as a minister’s wife and the mother of ten children. And, still somehow, she had lived and died on her own terms.
As a high school student and young adult, I had thought myself smarter and more chic than my mother. I took Geometry and Algebra. She had only an eighth-grade education. She made her own mayonnaise. I bought mine at a gourmet grocery store. She didn’t even have her own check book!
In my childhood, Dad had stood at the front of the grocery store and smoked a cigar while mother filled the grocery cart. When all the coupons were redeemed and all the groceries bagged, he strolled to the register and wrote the check. He wouldn’t let her visit her two sisters because they had married and divorced more times than we could count. I went to college. I got an education, thinking it would liberate me from the dull rules rural America had assigned to women like my mother. Her lack of independence suffocated me.
But after her divorce, Mom opened her own checking account and visited her “wayward” sister. She sold the big Oldsmobile that Dad had given her and bought a small sports car! But more than that, she let her children know what was important to her. She told us what she valued, what her final years would look like, and how she wanted to die. I began to realize that her life exemplifies a type of wisdom that only comes from journeying open-eyed and joyful through ninety-five years of life.
Sharing Mother’s story
The year Mom died, I taught a college course for senior nursing students introducing them to the topic of advance care planning. I told them that a person’s life story can help us know how a person wants to die. Time and again, I found myself using my mother as an example. her diligent preparation and willingness to communicate with us kids were strong examples of how advance directives can extend a person’s independence well beyond his or her ability to remain independent.
Many of the students argued that their grandparents were old school and didn’t want to talk about intimate topics such as how they want to be treated when they can no longer care for their own bodies or how they want to die. One student talked about how overwhelmed her dad was, when his mother (the student’s grandmother) said she was leaving all such decisions to him. One student told the class about her brother’s death from AIDS and how her parents had disregarded the values and concerns of his life partner. In response to their trepidation, I told them about my mother. I said, “Yes, your grandmother can talk about her wishes. Listen to this story about my mother. Listen to stories about my husband’s family, my friends’ families, and my patients’ experiences. They will help you. They will teach you. They will make you feel normal. They will make you laugh. They will make you cry. But, most of all, you will benefit from them.”
I told them that a person’s life story can help us know how a person wants to die. Time and again, I found myself using my mother as an example.
I urged them to collect similar stories from their own families and to listen to the stories their friends told. I knew that such stories would prepare them to understand and recognize the gravity of the challenges they would face when, as healthcare providers, they were called to support dying patients and their families.
Then, as part of their assignment, I required that each student complete an advance directive. I asked them, that is, to explore their values, and document the kind of healthcare they would want to receive if they were involved in a traumatic and potentially disabling accident or after receiving a terminal diagnosis. I also asked them to explain their decisions to one or more of the other students.
My mother’s story caught their imagination, and in the weeks that followed, various students began to speak openly about the encounters and conversations they had initiated with their parents, grandparents, spouses, and even roommates as a result of this assignment. They had gotten it! The gulf between life and learning narrowed. Then and only then, did I connect my mother’s wisdom with the knowledge that I had long been attempting to convey to my students.
And, so, my mom is with me today, always encouraging me and always serving as a model of newfound independence. She was in her seventies when she pursued her freedom. With few resources and little education, she reclaimed her life from her married identity. She lived without regrets those last twenty years. Who could have imagined such a transformation?
Do all American families have the resolution and clarity about life that my family attained? I sincerely doubt it. In fact, I know that they do not. I know some families who have never gotten along or agreed about anything and others who ignore or totally deny looming health issues. Still others may focus on financial resources like savings or insurance, seemingly unaware of or immune to the difficulties that lurk behind even the best financial securities. Estate planning can be very important, but this book is about relationships, living well, and dying as Mable Clark did, as freely as she had lived.
Each of the chapters in this book tells a story (or stories) to help us successfully accompany and care for aging or frail parents, spouses, or friends. The lessons we learn from the stories accumulate with each chapter. Some will be more useful to you than others, but you will gain important information from each of them. Applying these lessons to your own life can help you and your family make better choices and avoid confusion. In this introduction I have told my mother’s story as a way to begin the conversation. Don’t be surprised, however, if Mable also finds her way into other chapters. Her no nonsense approach to life and dying delights me even now.
Chapter One addresses the tensions and inevitable transitions in our relationships that accompany the end of life, the pull on our minds and hearts when grief and celebration are entwined. The simple but profound truth that emboldens care is being able to value what remains: grief and death are not the end of our relationships.
Chapter Two describes how your parents’ values and beliefs influence their declining years and their healthcare decisions as they get older and become more dependent. I will also offer some tips on how you can begin conversations that will help them explore these delicate topics.
Chapter Three explores family dynamics and the importance of understanding how your family works in both positive and negative ways. David and I have fifteen siblings between us but we know that “only children” have challenges, too.
Chapter Four emphasizes the importance of choosing a proxy, that is, a surrogate decision maker or power of attorney for healthcare decisions. What characteristics make one a good proxy? How do parents determine whom to ask, and what questions ought the proxy ask his or her parents? What should they expect their role to be?
Chapter Five addresses communication issues that an individual will confront when he or she accepts the role of caregiver or healthcare proxy.
Chapter Six includes valuable lessons about establishing goals of care for aging family members.
Chapter Seven focuses on caregiving from both the cared for and the caregiver’s points of view. I will also ask you to consider what can happen if the caregiver’s health and well-being are neglected or compromised.
Chapter Eight confronts the challenges you will face in choosing where your parents will reside during their declining years, the difficulties of caring for them at home, and how you can anticipate future decisions if remaining at home becomes unsafe or untenable for various reasons.
Chapter Nine explores the choices that must be made when aging parents experience serious illness. This chapter is a complement to chapter 4. In that chapter, we discussed the formal appointment of a healthcare proxy. In this chapter, we discuss the use of the healthcare treatment document as a guide to hearing your parents’ voices and acting on their wishes. Together, an involved and loving family and an informed healthcare proxy can partner with the healthcare team – to insure that your parents avoid defaulting to a medical glide path that almost always makes a standard of aggressive curative care their only choice.
And so I write, and have written, to invite you to talk openly and honestly with your parents about their values, their hopes, their ideas of how they want to die. It is their journey; accompanying them and giving voice and substance to their decisions is your privilege.
The poet Mary Oliver writes in “When the Roses Speak, I Pay Attention”:
the heart-shackles are not, as you think
death, illness, pain,
unrequited hope, not loneliness, but
lassitude, rue, vainglory, fear, anxiety,
I write, and have written, to give you courage and resolve so that when the journey is finished, your grief will not be heavy and no regrets will shackle your heart.