Ann Cason Geriatric Consultant
Finding the Path to Family Care
A Slice of Lime
I am in the emergency room talking with a frail older woman. She has hurt her back and is also having difficulty breathing. Her skin is the color of the sheets. A respiratory therapist puts a little mask over her face. As she loops the strings behind the old woman’s ears, healing steam begins to flow. Sara reminds me of an elephant-like elf from a steam-risen world.
But even with the mask, her voice comes through loud and strong: “I gave birth to my first child in San Francisco.” Her speeding mind is in San Francisco while her body is taking a treatment in Los Angeles. With mind and body working at odds, she has no recollection of being falling-down drunk, hurting her back and calling her daughter for help.
In the emergency room the day wears on. The EKG reminds Sara of having a permanent wave to curl her thinning hair. She shows no curiosity about the echocardiogram, but the young Asian technician is an object of considerable interest. “Who’s your date tonight?” she asks.
Then she drinks a glass of lemon-lime soda. “This is really good,” she tells me. “Not too sweet.” The nurse comes in to move her from emergency to a hospital room. Soon she resumes drinking the soda, now brightened with a slice of a lime that I purchased while Sara was moved upstairs. Drinking glass after glass, her color improves.
Suddenly I can see her as a young woman sitting on her patio, smoking a cigarette and sipping a gin and tonic with a squeeze of lime while her children play at her feet. I can see her in her fifties, in the year after her husband divorced her, sitting at the bar of a classy resort, smoking a cigarette and sipping a gin and tonic graced by a slender wedge of lime. Now that she is in her eighties, I see her holed up in her apartment surrounded by empty bottles of cheap vodka and ashtrays filled with cigarette butts.
The doctor tells her that if she wants to live, she has to stop drinking and smoking. Does she want to hole up with her bottles of vodka, or does she want to make the effort to get over it? Sara goes along with the hospital’s plan to send her to rehab to strengthen her aching back so she won’t be a risk to fall. I am happy about it as I think it will give her a break from smoking and drinking, a contrast of wellness.
And at first she does well. After a month or so, she puts on a little weight, her color returns; she is getting her strength back. Then one day as she sits in her rehab room with the sun shining through the imperfectly washed window, she gets a whiff of cigarette smoke. Sara wheels her chair out into the hall and finds an outdoor patio where several patients sit talking and smoking. She wheels out and bums a cigarette.
From then on, her breaks from exercise are spent out on the patio. When it is time to leave rehab, Sara finds a woman willing to take her back to her apartment to stay with her for room and board. But the relationship doesn’t turn out as Sara had hoped. Before long, her new caregiver moves out.
Sara is back in her apartment alone, with care for a few hours a day. She seems to be doing well, but no one notices the vodka bottles piling up in a back closet. As soon as the caregivers leave, she resumes drinking the vodka delivered by cab to her apartment. The momentum of her old habit has taken hold.
How I wished she’d found a way to be lonely without vodka. Her old remedy for loneliness had blotted out familiarity with a simple state of mind, where a squeeze of lime can be so refreshing. Sometimes our blessings are a curse. Or was it only that her time had come? I’ve heard that if you drink too much, right before you pass out, the mind and body synchronize. At the last minute, could Sara have gone through her fear of being alone? Could she have been lying on the floor graced with a vision of the open sky?
I attended her funeral. She had a large family and many friends who honored her with laughter and tears. Not knowing the answer to the puzzle of Sara’s life, at the reception, I ordered a glass of mineral water into which I, with a determined twist, squeezed a slice of lime.
Heart Speak
Last week I was invited to speak about death and dying to a group of young people (all under the age of 35). I had thought that younger people would not have so much experience with old age and death. But I was wrong. Each person who sat in the circle we formed had suffered the loss of a grandparent, parent, sibling, friend or pet. Each of the people had already felt acutely the loss of a loved one from sickness, natural causes or even murder. One young man who had served as a caregiver to an older man had witnessed the grief of the elder’s son. Later when his own mother died, he said he felt the loss as if his heart had been ripped out. Then he knew how the other had felt such grief.
It is very helpful to listen to younger people tell of their experiences with the dying, of how it feels to lose ones they have loved. It helps older people to appreciate their own lives and what it means to be a human being, to value communication across generational boundaries where we think the language is different. I learned that the language of the heart is the same for all ages.
Meeting it Head On
L. Jay Stewart
A few years ago, I met an older man, a southern gentleman. We connected. But he told me, “You are a Buddhist. I would never use your services!” I was silent for a moment as my mind raced through different scenarios about how I had spent years writing my book so that it would have no Buddhist or religious lingo. I wanted it to convey the spirit of caring and of aging as not religious, but human, as the heart and basic goodness of humanity. But what could I say that wouldn’t sound corny or defensive or dismissive of his belief? Finally, I decided to meet him head on. “You shouldn’t worry,” I said. “Old age and death cross all boundaries of race, gender, and religion. Caregiving is not a religion.” I wanted to tell him more, but thought to myself how caregiving is a calling. Literally, someone calls you on the phone and asks for help.
For me, my call came at the age of 8 when my mother and I were at the edge of a creek, replete from eating watercress that we had just pulled from the running water. Right then, my mother told me that the reason people are on earth is to help others.
As I grew up, that challenge became a central issue of my life.
At first I tried teaching school for a few years, then searched for the meaning of life, finally ending up in Boulder, Colorado at Naropa University learning to meditate and studying with my teacher. Soon after, I met a friend and we worked together to start a not-for-profit caregiving agency that allowed older people to stay in their own homes until they died. Or at least as long as they could. Caring for older people at the end of life presented the opportunity for trying to help others. My teachers presented another challenge.
Trying to be a helper was not enough. They wanted me to make friends with myself and to find the workability. Here was a chance, right under my nose. What could bring my life challenges together better than this frail but perky gentleman? So I told him what Bill Moyers had said, “The death rate in this country has not changed. It is still one per person.”
“You have some good points,” he told me, as we changed the subject and went on to lighter topics with that good feeling of making a new friend.
Breakfast, a Book and a Broken Heart
“I just want a little bowl of cereal for breakfast,” an old woman says as she sits down at her breakfast table. She forgets, though, to let you know what goes with her cereal.
Next to her little bowl of cereal sits a yellow tote bag. In the bag are her medications: heart pills, liver pills, eye drops, water pills, acidophilus, stool softeners, muscle relaxers, spiralina, pancreatin as well as blood pills, gas pills, hormone pills, vitamins, and supplements. Next to the yellow bag, moving counterclockwise, is a tray shaped like a fish. It holds soy sauce, ’cause she can’t use salt, goat’s milk ’cause she can’t eat regular dairy, and a tub of diet margarine since she can’t eat butter but needs something on her cereal.
Don’t just plop the cereal bowl down on her good wooden table. First, put down a place mat, then a tray, then a plate under the bowl. What might happen if crumbs fall off the plate into the cracks of the place mat? If toast crumbs get away, who knows what might get lost next?
Directly in front of the bowl and a little to the right, almost touching the knife, is a glass of cold water that comes from the filtered water pitcher in the refrigerator. The water is too cold for swallowing pills, so put in a splash of hot water from the tea kettle whistling on the stove.
Slightly to the left of the glass of cold water is a mug of freshly boiled water. Lying beside the mug is a tea bag. Don’t put the bag in the water in the kitchen. Bring it to the table first, or the tea will get too strong.
You don’t want this dear old woman to get the jitters.
Right behind the glass and cup, directly in front of the mat with the tray, the plate and the bowl is a plastic Tupperware box. Inside the box are 6 jars. These are the ground up seeds and nuts that make cereal nourishing and make it taste better when you can’t have dairy and sugar.
Behind the box with the jars of seeds and nuts is a nice tall jar filled to the brim with plump dates. A long pair of scissors lies on the table with the sharp blades pointed toward the fruit.
Coming on around, still going counter clockwise, is a little stand to hold the morning newspaper or a book, depending on whether it is a day for light or serious literature. Next to the reading material are two extra pairs of glasses and a magnifying glass pointing toward the napkin that has only been used twice, so why throw it away?
Hidden behind the stand that holds the reading material is a bowl of brown sugar and a jar of honey in case she can’t stop herself from having something sweet. And in the background, from the public radio station, the low wail of “Your Cheating Heart, You Made Me Cry,” as the hour slides into the morning headline news.
What courage and sadness lurk in this small woman with her breakfast and book and broken heart? Is she all of us who ever wanted something: a bowl of cereal, a lasting love, a well-lived life where wants, transformed into longing, become fuel propelling us on?
Conversations about Death and Dying
L. Jay Stewart
The other day I chatted with two friends. One mentioned a phenomena that is racing around the country called “Death Cafés.” The other friend asked, “Oh, is that where you go to kill yourself?” Then she stopped, looking doubtful and confused. Clarity often arises from a confused, not-knowing state. But in this case my friend scratched her nose and said, “That’s not right.”
Many people are confused about what to do about dying. Should we kill ourselves or let nature take its course? Shall we take our technology or have it withheld? In order to help readers in search of a good death make it through the medical system, the author Katy Butler has written the best selling book, Knocking at Heaven’s Door. She and her mother tried for years without success to get her demented father’s pacemaker turned off. On the other hand, her mother, when it was her time, refused treatment which had a good chance of extending her life for many more years. It was hard for Katy to let her go. Her book speaks to many people going through similar dilemmas.
Death Cafes are intended to create a safe and social space for people to gather and talk about death in a relaxed and sharing manner. Although the name, Death Café, doesn’t really grab me, I like the idea of a salon. It is an aspect of culture that is arising where people have a dinner or dessert potluck and share conversation about issues that matter. The only thing that slightly concerns me about so much talking about death is the question: Does talking help a person prepare to die? Andrew Holecek, the death authority and author, is teaching workshops to give people all they need to have a graceful exit with both the meditative and practical approach (workshop in Boulder, Colorado Nov. 1-2 as part of Shambhala Mountain Center “City Series”). As far as death cafes or salons are concerned, perhaps it is a help for people to learn what they need to avoid being hooked to machines. Also, many people do need a place to talk about their experiences of caring for loved ones who have died, processing anxieties about diagnoses, and in general discussing the meaning of life.
Now that the country is as Sakyong Mipham says, “…at a crossroads in our history: we can either destroy the world or create a good future,” a salon could be a good place to nourish and consider. Perhaps it is a first step of processing toward letting go or toward the deep ”psychic shift” that we all must make: that human goodness is our heritage and the goal is not the grave.
Reintegrating Our Elders
The following story was submitted by Annie in response to an article which I wrote for the Shambhala Times called “Receiving the Goodness of Our Elders.”
Annie says:
“I remember very vividly one of the greatest transmissions my grandmother gave to me. She was hospitalized and in the process of dying. We were alone in her hospital room, her in bed and me sitting bed-side. The conversation turned to the future, and it hit home that she would not be around much longer – that my future would not have a Grandma Trudy in it in her present form. I choked up and started to stumble through some kind of goodbye, and she turned to me and said quite simply: “Oh, this is your first big goodbye. I will try to show you a good death.” And she held true to her word – approaching her own passing with honesty and humor – allowing herself to feel and struggle and let go in such a dignified and selfless way. Her teaching still touches my heart.
“When we divorce ourselves from our elders, we miss these great teachings. It is my secret hope that with the baby boomers aging, and the lack of social resources, we may find solution in reintegrating our elders into our homes and daily lives and reconnect to our personal lineages.”
A Watchman, a Spy, and the Wisdom of an Elder
Spying is big these days. Bigger than looking for wisdom. But in my work with older people, I often get to do both. As Bob Atchley tells us, “ordinary sages” are all around. And this opportunity to find one came when I was asked by a daughter to find out what was bothering her father, Sam. He suffered from Alzheimer’s, was a widower who had left his home in another state for a mostly-Jewish assisted living facility near his daughter. She asked me to take him to buy some new slippers. Sam told me right away that he didn’t need new slippers. What he wanted me to do was to read him an article called “FLP’S Flop with the IRS” which was about leaving your assets to family in a proper way before you die. But after I finished reading, he agreed to go out to shop for house shoes.
As we entered Rite Aid, Sam went up to a young clerk and asked him, “Are you in the shoe business?” The young clerk blinked his eyes but recovered quickly. “Yes sir, we have a few at the back of the store.” And he pointed the way. At the Wellness center Sam engaged a young woman, “So you have shoes?” “Just around the corner,” she assured him. Rack after rack of cheap and furry foot coverings. “These would be great if we had snow on the ground,” Sam said as he reached for a pair shaped like boots for Genghis Khan. And predictably, none of the slippers was quite right, so we went back to the assisted living for lunch.
On this “watchman” day, I joined Sam at a table for six, noticing that he especially liked a small, active woman who sang. This morning I had seen her in the lobby singing to people who were coming in and going out. But it wasn’t the singing that Sam liked; he liked her because she needed help opening packages of crackers and getting lids off creamers. Sam was very tender as he helped her and got her to stir her coffee.
The luncheon choice that day was vegetable lasagna or herb-crusted pollock. I ordered the pollock. “What did you say?” the little woman asked me. “Pollock, white fish” I answered. “Oh,” she told me. “I thought you said that you wanted a Polack for lunch.” “My husband was a Polack,” she told me, “but I am a Russian.” She told us how she had come here at the age of seven to this place where Jews gather from all over the world. “I had a big family, two brothers and five sisters.”
Here my client stopped her and said, “That interests me. You have a big family, and they can live with you until they grow up, and then they are booted out.” Sam spoke with passion. My mind stopped as the conversation moved on. Did Sam feel that he had been booted out of the family into a nursing home?
Two subjects interested Sam. Both had to do with family: the unfairness of getting booted out of the family. And worry about his assets. (Suddenly I remembered my own grandmother telling me that her boys just wanted to get her money and put her in an old folk’s home, which wasn’t true but a fear none the less.)
Sam had some fears and feelings that needed processing, not easy if you have dementia. How could his worry be expressed and received? But this little singing woman did receive Sam’s offering of his concern.
“No!” she said. “When people grow and it is time to move on, it’s okay for them to go.”
The Worthiness of Our Elders
I’ve been away from writing for too long. But it was for a good reason. I was attending the wedding of my son, a happy time which made me think once more, “There is something basically good about being a human being.” And yet according to Pope Francis at a recent conference for World Youth Day and lamenting the poor employment opportunities for youth, we live in a “culture of rejection.” He added, “We are used to this culture of rejection with old people; we do it often, despite the life wisdom they give us. They are left on one side as if they have nothing to offer.”[1] And it does seem, according to Sakyong Mipham[2], the leader of the enlightened society movement, that we have to shift our view to include all of society as worthy. If we take on negative views, we forget our worthiness.
We all share the desire to be happy. We all share being born and aging and dying. And whether happy or sad or sick or well, we can all wake up to the present moment. In fact, the well-known gerontologist Dr. Robert Atchley says that, “while the world has always extolled the value of wise men and women, there are everyday people from all walks of life who have matured spiritually and gradually developed the qualities and skills we associate with the wise sage.”[3] He calls them “ordinary sages.” He listed many qualities of the sage; one skill that struck me is that “sages are skilled at discernment, seeing the essence of things.”
I saw it recently at Caritas, the memory unit of Mary’s Woods, a retirement center in Portland, Oregon. After lunch, Reverend John, a chaplain, gathered the residents for singing. Sixteen elders, who suffer from some form of dementia making them vulnerable and needing complete care, live in this special care area. Each person at Caritas is toward the end of life, frail and lonely and some might say sick. But I saw basic healthiness, that even though a person might be well, or might be sick, it is still possible to be awake in the present moment.
The room at Caritas is nice, with tall windows and lots of light. Reverend John[4] has a guitar and leads the singing. We all sing together songs about animals being at peace, particularly the Pete Seeger song, “Wimoweh”. Singing with that deeply evocative rhythm, I am reminded of hearing about traditional societies where the elders who once lived in family compounds, instead of being labeled demented, could wander at will, “communing with the gods.” The residents of Caritas also wander freely in their world.
After the singing, Reverend John asked a question of B. It was her birthday. “What wisdom can you share with us from having lived so long?” After a long silence, B told us. “Take care of yourself and others.” Then Reverend John asked another elder to say a prayer. J said, “May we be better than before and keep our eyes on the future. Amen.”
For a moment, I glimpsed what my teachers have taught. Even with all of our foibles and hurts, or aggression or dumbness, there is something soft and open and feeling within. It might be covered over but can’t be taken away. In spite of all of the details of each individual illness, these lovely beings are old and frail because they have been born human. They will die (with wisdom intact) because they were born, as I have been, as human beings.
[1] Pope Francis in Brazil, speaking on behalf of World Youth Day, on July 22, 2013.
[2] Sakyong Mipham from his book, The Shambhala Principle, Harmony Books, 2013.
[3] Dr. Robert Achtley, in a phone conversation on July 19, 2013.
[4] The Reverend John Aamodt of Pastoral Services at Mary’s Woods, Portland, OR.
Not Rocket Science, But …
“If we can’t be where we are, we can’t feel. If we can’t feel, we are unable to appreciate and care, and our most human trait—the yearning to connect —-is confined. We are like a river that is meant to flow but has now been dammed.” Sakyong Mipham in The Shambhala Principle.
Caring for old people is not rocket science. The resistance to it is great. But resistance can drop quickly.
Once when I was young, in my late 20′s, living in Santa Barbara, CA, I was resisting life. My agenda was to play it safe. Everyday was gray. I lived in a small apartment at the end of a long driveway. Each day I would plod down the walkway, go to work, plod back home like a cow heading to the pasture and heading back at dusk, head down following the backside of the cow in front. Then one day my foot crunched on the gravel, and it woke me up. I remember lifting my head and looking gradually up from gravel, to lilac bush bare of flowers, through the space between the neighborhood houses where I glimpsed the ocean. There was this humming aliveness: a barge on the horiz0n, blue sky, white clouds, the sound of birds, the whole world flowing, tweeting, smelling like roses and feeling good. Such curiosity arose, how could it be? With one foot crunch on rock, resistance dropped away and I longed for, I wanted to know how it could be? The question remains, How could it be?
I’ve had plenty of practice with resistance. My work, my life, my practice. I’m grateful for it, like how good it feels when the jack hammer stops. For instance when I visited Lane, who was small and walked with a big walker, she would want me to walk with her to the bathroom. She would pick up the big walker, move it up a few inches, then walk the smallest fraction of an inch. Bored and impatient, I knew I could walk this hall in 5 seconds. Lane would take 10 minutes.
Then a ray of light struck the metal walker. Startled from my low mood, I looked around, a spider web dangling over the door, paint peeling in an intricate pattern, the smell of the oil on the dark wood of the floor, the hiss of the big green oxygen tank standing in the corner, the clink of the walker and a sudden joy. Not rocket science, but the freshest moment now.
Receiving the Goodness of our Elders
“Kindness cuts through isolation, fear, and aggression. All of us can remember moments of kindness that changed our day, at least—-and maybe our lives. When we relegate kindness to mere social courtesy, we are handicapping our access to the ambassador of love and compassion—-deeply held powers of the human heart. If we want to continue to evolve, we should cultivate ordinary kindness. With kindness, we will shift our future.” Sakyong Mipham in The Shambhala Principle.
In his new book, The Shambhala Principle, Sakyong Mipham presents a view that we as human beings are basically good. By that, he means that we are whole, complete, and worthy. Kindness and compassion are at the core of our human nature.
In my field of gerontology, the world is gearing up to care for the baby boomers, who because of their vast numbers, are predicted to become a burden upon our declining society instead of a blessing. But older people are the holders of the cultural transmission of basic goodness. All human beings are holders of basic goodness, but it is more accessible in older people, even though often missed.
As older people begin to have diminished life force and dimming senses, space needs to be provided so that this transmission will not be lost. Then caregivers can receive it and nourish it and share it from where they find it: by slowing down, listening, practicing kindness and feeling the heart.
Many old people plod along trying to make it through the day. Many caregivers think that their task is to make sure that they won’t run away, that they will stop driving, that their dementia will not drive us crazy. Or at the very least, that they will have a healthy aging with proper food and medicine and relationships. Protection is good, but only the start.
Although aging is a time of life that brings possibilities, the tendency is to regret the way life turned out. Many elders collapse under the weight of unhappiness. They don’t have the energy to engage. So often both family and professionals approach older adults with an agenda to fix or console. But there is a danger of the mind getting stuck on pity or sadness, rather than expanding into the enriched heart and mind.
After reading The Shambhala Principle, I feel more than ever that the work to be done with our elders is to connect with and receive basic goodness. We could create a culture of kindness for older people and in so doing, we would create it for ourselves. Or it could be the other way around. We could create the culture of kindness and ask the older ones in. Walk right in says the spider to the fly. And the good thing is that we don’t have to tear down or dismantle or just not participate in the world that is right under our nose. What is it that takes us farther than we thought we could go? What is it that makes the heart take wing so that you suddenly know and feel brave? Feeling basic goodness leads to curiosity and care.
The following is a story of a family caregiver who, at the end of his rope, got real brave and stepped beyond his agenda of what he thought a good husband should be.
I met Dan at a family support group. He had cared for his wife, who suffered from Parkinson’s for many years. Overwhelmed by her illness, she would not let anyone except her husband care for her.
Dan heard about a camp that was designed for caregivers and their loved ones who needed care. One day he got her into the car to take her for a drive. Without speaking, he drove her straight to the camp, got there in time for dinner where they sat with other couples and had a nice time. She agreed to spend the night and went off with a caregiver, while her husband went to a dorm to spend the night with other husbands.
In the middle of the night, he awoke to the sound of a man calling out, “Wake up, wake up, come outside.” Fearful that it might be a fire or other disaster, he ran out. Then stopped and looked up. A full moon shone down flooding the flat ground with moon light. The men from the dorm stood together basking in the magic. “That is the first time I have seen the moon in many years,”, he told his wife as they drove home the next day. And she agreed to come back to the camp again.
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