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.