Ann Cason Geriatric Consultant
Finding the Path to Family Care
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.
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.”
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.
Many Strokes for Different Folks
A few years ago I consulted with a family in California. The son’s 90 year old mother was at the end of her life with heart failure, but she didn’t want to go to assisted living. His wife was willing to help care for her husband’s mother within their home, but the unemotional accountant son wondered if he could do such a thing. The relationship between mother and son had been challenging.
The son drove to his office, listening to music and thinking about it, when Schubert’s “Death and the Maiden” came onto the radio. For a moment, his heart stopped. It was the same music played when his grandmother lay dying. At a family meeting he told us, “I believe in auspicious coincidence. I want to bring my mother here to live.” To him, it felt as if he had received a message from the cosmos.
So the family got some caregiving support from an agency along with a walker, wheelchair and hospital bed.The old woman came to live with her son and his wife. As her care progressed, the doctor suggested that the mother should have a catheter. She was so weak. It was hard to get her out of bed at night for frequent urination. A nurse came to put in the catheter. She was a little frazzled. Perhaps she misspoke, but she told me that her office had told her, “Don’t put in the catheter if it is to help the family. We only practice person centered care.” Perhaps the office was being overly zealous in their understanding of person centered care. Is the person some skin encapsulated ego separate from her family and helpers and home? When the phrase, person centered care was first used, it was an attempt to stay with a person’s goals and sense of living within the institution. It was meant to counter the over efficiency and materialism of the dark age.
Nowadays, we realize that a person is part of a whole stream of being. If we don’t care for the caregivers, we end up not with just one person dying, but a whole society acting like the walking dead. What support does the family need to bring comfort to a loved one without damaging the whole family’s state of mind and pocket book? We need more articles like the one in the AARP Bulletin in April, 2013, by Sally Abrahms called “Saving Money by Living Together: Three Generations Are Making it Work.” She dwells on the practical aspects of the arrangement which creates a situation that is more than saving money, but also the basic goodness of healing lives.
Many strokes for different folks. Each person is unique. Once you look at the whole person in the whole setting, you start to see what could make life easier for older people, for the family caregivers, for the professional helpers and neighborhoods and cities and a whole wide world.
The day before I left this consultation, I remember a goodbye party. Sitting at the table, with the sun shining in were the older woman with a wheelchair and a caregiver, and a grandson who was going to coordinate his grandmother’s care. They were laughing and eating chicken sandwiches. A coconut layer cake was waiting to be served. Later when I went into her room to say good-bye, the older woman thanked me and said, “Don’t worry about me, this is what happens, it can’t be helped.”
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