Life In Death

Today I was one with a family, sitting at the bedside of a dying man. We talked about life—the man’s life, our own lives, memories, current events, all the things that make up a reflection and a sharing of living. We laughed. We expressed our gratitude that death would mean an end to this man’s unpleasant times. His family cried.

When a family gathers awaiting death, they continue to live, they joke, they ask questions, they remember. Memories of other times come to mind and, although the family members are sad, they smile. Their tears are ones of love . . . and filled with living.

Feeling the Pain

I recently spent a short time with my dear “cool cat”—a man with the wit, humor, and intelligence that most people only imagine or glimpse through a scripted television personality. I am privileged to enjoy the percolating mind of this man on a regular basis. He is full of funny jokes and true tales of life and celebrity. He is my best companion for conversation and review of current events.

A few days ago I could see that he wasn’t well, not himself, in a bad mood, short-tempered, and sad. I asked him if he was feeling down, and he readily admitted that he was. I quickly learned that he was experiencing intense physical pain from his arthritis, and that he was so depressed he was having suicidal thoughts and had been for days. He told me that he had expressed his depression to the psychologist in his living facility, but there had been no response in terms of his medical care.

I talked to the medication tech about his arthritis. She acknowledged that she knew he was in pain and agreed to arrange for him to get routine dosages of Tylenol. I arranged for the physician to order an anti-depressant, and the doctor acknowledged that he knew the cat was usually pretty funny.

It was shocking to consider this incredible scene from the outside looking in. The cat is in the best facility money can buy, with aides and nurses as good as anywhere in the industry. They all knew that he was in physical pain, that he couldn’t even lift his arm to the piano keys when they begged for him to play a tune, but it occurred to no one to do something about it. They know his typical humor, his flair for entertainment; he had told them himself that he wanted to die. But no one suggested a treatment for or response to his depression.

Time after time I find myself with families who are rightfully expecting that the professional staff and caregivers will inform them and offer an appropriate response to the needs of their parent. Over and over I find myself advocating for the one in pain, for the family desperate to see their loved one comfortable again, and for the whole complicated system. This system is being neglected and sabotaged by apathetic players—people so disengaged that they have no empathy and no way to feel the pain of the people they spend all of their working hours with, the people they have obliged themselves to care for in the most intimate and basic way.

I am at a loss. How do I kindle empathy and compassion? It would not be fair to say, “They don’t care,” because I know they do. But what now?

Letting Go

A lengthy but thoughtful New Yorker article about the trials of the end-of-life process is worth taking the time to read. Author Atul Gawande paints a picture with the story of a young, first-time mother who discovers inoperable cancer—a picture of the universal and more-real-than-ever struggle of people young and old who must face the blurry options of modern medicine and extended days rather than a quicker, perhaps more peaceful ending.

The article poses an important question for all of us: How can we build a healthcare system that will actually help dying patients achieve what’s most important to them at the end of their lives? Read more here.

Stepping Stones

A flood of memories and images recreated in a troubled mind . . .  

It was like a kidnapping. His mother took them from their father, not to be seen again until after she died.

Middle-aged men reunited with the father that had disappeared from their lives with no explanation or consolation.

Nearing the end of their lives, the boys return to those times and repeatedly retell the confusion and wonder. They relive the pain and continue to reunite and enjoy the union of their family.

Now he knows a new pain. “Your wife can’t live at home any more.”

It was a removal of the body, alive. Unable to remain, she was taken to another home and now she is happy, content, and well.

He is sad, lonesome, forgetful, and in love.

Finding Truth

He was more than a client. He was a friend.

His daughter was searching for something—a reflection, a word from the wise, a shared tear of understanding. This was all I could think to say, and maybe it was enough:

It seems that with the passing of time, our losses, hurts, and regrets can become both deeper and more marked. However, when balanced by our expressions of love, our pain becomes the compassion we offer to others. What seemed like a loss becomes the ballast for our heart and soul.

Dreams for Human Habitat

I envision a new kind of place. It has acreage in the country with a community center and shared garden, kitchen, dining room, and activity performance area. It is surrounded at a distance by a variety of small but sufficient cabins in which aging individuals and couples live. These aging people maintain their independence while having the opportunity to engage in supportive community activities.

I have this dream. That people who are approaching the slower times in life can afford to live in a community like this, where they can sit in beauty and surround themselves with nature and common souls.

What do you see? What sort of residential care do you think we should be seeking for our parents, grandparents, and future selves?

A Cure for Coping?

I saw a woman today—someone who I have seen over the past few years through ups and downs of reliving a painful past and searching for the right way to live a painful present. Her husband has Alzheimer's disease; he has left their home to be better cared for in a Memory Care facility.

Each week I see the pain and desperation ever more present in her eyes. "How can I bring him back?" she asks. She lives alone in their home. She sees him at his new place, every week, knowing that each time the disease has changed him just a little bit more.

Today she told me that she can hardly cope. She begs for ideas—for how to connect with this man whom she loves, for how to give him the kind of love and interaction that he feels on the inside even if she can't see his response on the outside. She spoke as though her entire body and soul are telling her to not give up, but she needed some reassurance that this wouldn't be a wasted effort.

I told her that I believe in her love for her husband, and that I believe that he is still in there, ready to soak up her presence. We talked about what people say when someone is in a coma or at the very last stage of life. People say that a person in this state can hear their loved ones, feel the connection, and live off of the hope of their soul mates—they are still very much alive on the inside.

I said that we must believe that this could be the same for her husband; and I encouraged her to never underestimate the energy of love that can be shared by the touch of a hand to a face, a hand to a hand.

What a Long Strange Trip It Is . . .

Navigating unknown territories, facing powerful forces and boundless seas, we hope for smooth sailing and we look to arrive safely at our intended destination. Soon it is obvious we are on an uncharted route full of unknowns, loneliness, fears, frustrations, and heart-wrenching sadness.

The mixture of love, confusion, and tired but genuine concern makes caregiver responsibilities rewarding but sometimes full of conflict. Caregivers give unconditionally and with tremendous taxation to personal time, know how, and physical endurance. They keep going, continuing to hope for relief, assistance, laughter, good times, and sunny days.

The 33rd sutra in The Yoga Aphorisms of Patanjali, translated by Swami Prabhavanda and Christopher Isherwood (1953), is this:

“Undisturbed calmness of the mind is attained by cultivating friendliness toward the happy, compassion for the unhappy, delight in the virtuous, and indifference toward the wicked.”

This is Patanjali’s prescription for calming our minds and finding peace through our attitude toward others. I seek to practice and experience this mental calmness.

While its seems fairly easy for me to act with compassion toward the unhappy and pained, I then find that my tired and stressed mind turns to judgmental irritation with others. The work of caregiving is so tiresome, stressful, and enduring; I feel that I need to keep a certain and necessary detachment, but I must also practice unconditional positive regard toward others to prevent myself from getting down.

So many of us are faced with both the privilege and the extreme challenge of caring for our aging loved ones. We must remember to also care for ourselves, both internally—by calming our minds and cultivating compassion—and externally, by holding fast to our friends and social supports, unloading on a neutral sounding board, and simply taking a moment to breathe. A friend of mine, Jan Marquart, talks more about how to do this in her own reflection.

The Toughest Words

“Forgive me, please. I must speak candidly and say that which cannot be said easily.” These were my words as I helped a woman face death today.

Death . . . it was just on the other side of the door. I knew she needed to know. It was a choice between dying in her own home, or dying in an ambulance on the way to another attempt to continue living. The disease had already destroyed her; it was just a matter of time before it was evident to all. Hospice—despite its goal to bring a sense of calm and care—brings a fateful truth that some are not ready to accept.

This is the toughest part of my days—finding, or saying, those words. Sometimes it is about the simple reality: Death is near. Other times it is necessary to impart knowledge about the mechanics of how a body dies. Still other times I have to ask, or answer, the difficult questions: Who will be around at the time of death? How will you manage your symptoms? How do you truly prepare—saying or doing what you want most while you still can?

The ultimate determination is theirs to bear, but human decisions don’t always have power over death.

We Can Still Fly

It had robbed his soul of a moving body. The neurons in his brain were tired with age. Parkinson’s disease is a mysterious and incurable force.

But through the darkness and unanswerable questions, sometimes miracles await. This moment came for a man who spent his youth feeling the breezes, letting cold streams wash over his feet, praising the beauty of the nature all around him.

People had given up. Perhaps he had given up—almost. His body was stiff, frozen, remembering what it was like to run and jump and swim and lounge. But one person remembered to give him a chance at joy, at least through memory and touch. This person knew that fly fishing was a source of delight and peace once upon a time. This person watched as the old man sat, motionless by a rushing river, wishing his body back to youth. And then, something amazing happened.

The old man, paralyzed by disease, sat with a fly-fishing rod perched in his hand almost as a keepsake. And the keepsake turned into a magic wand as the man began to move with the rhythm of his fishing days. He stood and, for the first time in years, fluidly went through the glorious motions—whip and swirl and sink, whip and swirl and sink—of one of his earlier passions. Pure bliss, stored in the soul of a man who seemed forever stuck, literally moved him into flight.

Let’s never forget to hold onto hope, to keep trying. We may find life’s most amazing surprises.

An Unlikely Happiness

Today I stopped in to visit a woman who suffers from advanced dementia. She lives in a nursing home that can only be described as old and shabby. She walked down the hallway coming toward me.

One moment she wandered aimlessly, wearing her questions and anxiety like the dirty sweater she refuses to take off or let go of. The next moment, everything changed. I greeted her by name. I looked at her closely, genuinely, and told her it was good to see her. Her eyes searched for recognition, her face relaxed, and her face lit up like sunshine, gushing with gratitude for my visit.

Due to the dementia, this lady’s current frame of reference is some time long ago. But she very graciously allowed me into her memory. Convinced we were good friends, she lamented how long it had been since we had last seen each other. Then she thanked me, and she had a truly happy afternoon.

Two Families, One Story

Last week I was involved with two different families, helping both of them with difficult situations and seemingly impossible decisions.

One woman struggled to even consider the plan that her husband of many years will soon be moved from their home and into an Alzheimer’s care facility. Along with her reminiscence of their married life together, experiences with her parents and the related childhood traumas were flooding her mind every day and waking her at night.

One of the many challenges of grief and loss is that each new grief-causing loss will trigger a memory and possibly a re-experience of previous losses and pain.

I think grace correlates to acceptance, and the pain correlates to denial. The greater degree to which people have grieved previous losses and come to a place of resolution with that which is hurtful and out of their control, the better able they are to integrate those past experiences with the current. Without this, all the unresolved hurts are blurry and confusing; the past becomes present, and the current is suppressed.

A man is challenged by the fact that his wife is dying. Her neurological condition brought on sudden and rapidly progressing dementia and hallucinations. The resulting behaviors and beliefs have caused this woman to refuse medications, food, and water. She has lost a significant amount of weight in a short period of time; systemically, she’s at great risk of going into life-threatening crisis any day. All of this has occurred and progressed in just a few weeks time.

End-of-life care is often hard for families to provide. In this case, the man knows that his wife does not want to be resuscitated at the time of death, yet he cannot easily acknowledge that she is dying. It is happening too suddenly for him to comprehend. He is focused so completely on trying to understand what is happening to his wife and how to ensure that she’s getting appropriate medical and personal care, there seems to be no place for contemplating her death.

These are stories of love and resistance. The love is remembered, resurrected, renewed. Feared loss is feeding the resistance. I believe, however, that love can never be lost; I believe that it will be found to persist.

The Beauty of Old Folks

They laugh, they dance, they perform, they continue to love life. They are simply older versions of who they have always been, and I’m thankful for this joyfully entertaining reminder.