- Amy Agape
Can We Die "At Home" -- Even in the Hospital Without Family?
On my way out of town for the week, I visit Susie in her home. She is actively dying, so I know that this will likely be the last time I see her. I softly knock on the door, and her husband Claude opens it. “She’s in our room,” he whispers as he guides me down the quiet hallway. Susie has entered into a transitional stage and finally given up her wheelchair, her make-up, her perfectly matching outifts and accessories. They have been replaced by soft cotton pajamas as she lies in her bed in the darkened room.
I hold her hand, whisper to her words of appreciation, and tell her I love her. I kiss her soft cheek as her erratic breaths continue, and I eventually follow Claude out the bedroom door. Once we are all the way down the hall, outside of Susie’s hearing range, he turns to me with tears in his eyes.
“She keeps saying, ‘I want to go home’ and mostly just one word, ‘Home.’ But I don’t know what she means. She is home. Do you think? . . . . No, she cannot mean ‘home’ like. . . ., can she?” he asks me.
I believe that Claude is asking me about heaven, because I know that to be a concept (and, for him, a place) intrinsic to his belief system. As a hospice chaplain, my job is not to explain what I think about Susie’s cries for home. Instead, I lead Claude to share with me his experience, “What do you feel like she means when she asks to go home?”
Claude stands at the doorway, quietly reflecting.
“I just don’t know. . .” he begins to explain and then stops.
He cannot know what Susie means, of course -- not with his intellect or his reasoning mind, the way we usually consider ourselves to know something.
In fact, to that part of Claude, and to that part of each of us, Susie’s words seem to make no sense at all.
She lies in her own home. This is the home she has created with Claude, the place she has felt safest and most loved in her entire life (she has shared these feelings with me frequently during our weekly visits over the past several months).
So where does she want to go?
Some otherworldly home perhaps, as Claude is beginning to consider her words to convey?
Her body has not felt like home in months, perhaps years; could it be that she longs to return to the home of her physical form, the one she clothed in those matching outfits and adorned with sparkly jewelry?
Or is this “home” for which she cries something even more subtle yet more primordial than that?
Is Susie’s home some sort of internalized feeling, a sense of being “at home” regardless of her surroundings and even of the physical comfort level she feels within her own body?
Home can only be defined by each of us individually. For some folks, home is a physical structure; for others, it may be a specific geographic region. Sometimes, home requires a very fixed group of people. At other times, it has more to do with the larger community surrounding our dwelling.
Those of us who are in the midst of transition become intimately familiar with home. Sometimes that familiarity derives from our lack of feeling at home -- in our surroundings, with the people around us, or in our own bodies. But sometimes it is through these very displacements that we begin to find/create/explore a sense of home that exists beyond any physical, or even temporal, boundaries.
As a military dependent first throughout my childhood and then again as a young wife and mother, I learned to create, abide in, then dismantle homes quickly and adeptly. I became accomplished at what my husband calls “on-the-spot” nesting; whether that spot was a new house, a hotel room, or a bed in the cardiac ICU, I rapidly learned to make it home with a few objects and a bit of care.
But I have discovered that, while they bring me comfort, those nests cannot make me feel “at home”. The special items, the physical space itself, even the people around me are not home.
I began to perceive this one day when I was about six years old. That afternoon, as I rolled my body into a tight ball and rocked back and forth on the floor, I heard myself saying one phrase over and over, as if it were a mantra:
I want to go home.
I must have repeated that phrase dozens of times for over an hour. Gradually, I opened my eyes and pulled my body out of its tight ball. I looked around and became confused. Seated on the scratchy forest green shag carpet of my bedroom, I found myself in my family home.
So where was I wanting to go?
This event was my response to a traumatic situation I had witnessed -- a situation that apparently made me feel far from home, regardless of my physical surroundings.
The home to which I wanted to go was not a geographic location that existed, except perhaps in my memory.
The home was a feeling state, a sensation of being safe, a sense of rightness within and around me.
I have returned to that mantra frequently throughout my life. For decades, I used it to guide me back into my body, to learn how to feel safe within my physical form even at times when I found myself in locations and situations that felt far from safe. The phrase itself became a sort of beacon guiding me home to my “soul’s address”, as Barbara Brown Taylor calls it.
But one day, that’s soul’s address no longer felt like a safe place to be. As my heart and lung condition rapidly worsened, my body became a dangerous space to inhabit. How could I ever again want to return home to a home that was failing and would ultimately destroy itself?
After so much time spent cultivating a sense of home within my body, I found myself homeless. I could no longer feel safe in the physical form I had trained myself to return to again and again.
That was devastating.
Like so many others with chronic and terminal illness, I perceived my body to be a prison of sorts. I could not escape my failing heart and lungs, I could not get away from my troubles, because they lie within me.
The situation felt hopeless. As I lay dying in my hospital bed, I could not find my way home to the dwelling I had worked to create, the place where I experienced safety and acceptance and love within and around me regardless of my physical location.
One night, alone in the darkened room, the only sounds the beeping of monitors and soft footsteps of nurses in the hallway, I found myself in the familiar position. My limbs pulled as closely into my torso as tubes and machinary would allow, I rocked back and forth on the bed.
I want to go home.
Eventually, it came -- that sense of being at home. I settled into the shelter that had been carved out for me by my very longing to find it.
As I write this article, a multitude of our planet’s precious people are longing to get home. Patients lie in hospital beds hoping they will one day return to the place they call home. Medical professionals look forward to the time when they can be with their loved ones at home again. Family members and friends have been robbed of their sense of home when the person they love has moved to a long term care facility. And others know they will never again experience home in the same way after the death of someone dear to them.
Throughout my two decades studying, writing and teaching about, and attempting to influence our culture’s concepts about death and dying, I have had countless conversations about home. To allow people to “die at home” has been the goal of much work that occurs in the realm of hospice. Indeed, it almost feels like dying anywhere other than home is viewed as a sort of failure.
But spending time with hospice patients and their families has led me to wonder about all that. Susie is not the first person who has cried out for home from the place we might perceive as her very home. In fact, I have heard dozens, perhaps hundreds, of folks on their deathbeds, located firmly in homes they have inhabited for years, speak of “going home”.
I am not always at home in this failing body. Sometimes I still struggle to find the trail that will lead me there/here. But I continue to try. I set out on the pathway in search of that sense of being home. My longing guides me there. In fact, I have begun to suspect that my longing to be home may be home itself.