Looking At Living As A Loved One Is Dying

"Don't come visit me after I die...I needed you when I was alive...."

--Unknown

My 86 year old mother was diagnosed with Alzheimers 3 1/2 years ago. While watching her memory fade, can be sad and at times surreal, until she broke her hip in November, her physical health seemed to be strong and constant.

I had always heard that once someone breaks their hip, it is often the beginning of a downward spiral towards the end. But it is very different living this truth than hearing it as a "parable." While some of my mother's Alzheimers behaviors are quirky (like lying on the carpet picking up every piece of lint she can find for hours) or down right entertaining (like answering a question like "how was physical therapy today?" with a seemingly senseless tale of the Boston Red Sox hitting badminton-like tennis rackets at batting practice), seeing a loved one move into a rapid response crisis with congestive heart failure, with a team of twelve people working for four hours to stabilize vitals is a whole other matter.

I have been finding myself reflecting a whole lot more on living and what it means to be alive as I have been living through the decline of my mother's health as her life has been moving along the downward spiral, that only God knows is the last moment of life. One thing that has become very clear to me as my mother has spent countless hours and days in hospitals and rehabilitation centers, often called nursing homes, is how alone many people are as they ail and die.

I visit my mother as often as I can, but with work and commitments to my son and friends, I cannot be there nearly as often as I feel I "should" be there. I am very grateful that my mother has a nurse and home health aide who can visit her on days when I cannot. However, even with all of our visits, there are countless hours when she is alone. In a hospital, with telemetry equipment, IV's and a Foley catheter encumbering one's body, this can be very lonely, scary and overwhelming. No wonder disorientation moves into delirium. I am struck by how little our society focuses on the deeper emotional and spiritual needs of human beings, including their needs for connection, relational security and presence during scary and hard times.

When the staff has commented that the visits of me and my mother's nurse and aide have helped her immeasurably, I feel even more deeply for those who have no one coming to visit them when they are ill or declining in a public facility. When someone goes home after an illness or health crisis, it can also be incredibly lonely faced with what has just happened, and being all alone.

Hospice is a wonderful concept for a person's last months of life. Yet, I wonder about some kind of care-giving structure that focuses on companionship, emotional contact, a loving hand to hold, and continuity of emotional care for people going through hard time or transitioning as life draws to a close. Some people are fortunate enough to have large networks of family and friends. My mother is not one of those people. She has been a loner much of her life. I cannot imagine there are moments when she does not feel quite a lone.

The process of dying has surely cast a lens on the process of living for me. I have always realized life is fragile. And now the clarity of that truth is even more apparent. If there are dreams we have, taking action today is essential because we don't know if there will be a tomorrow. Telling the people we love that we love them can never be done too many times. Being fully present with the people we love and asking for them to give us their presence and time allows us to exchange the most precious gift of all--our presence with one another.

We are all irreplaceable really. Our virtual culture may lead us to forget this truth. But watching a loved one go through the downward spiral at the end of life brings it home loud and clear. As James Taylor said, "Shower the people you love with love." Ultimately, that is one of our greatest powers and one of the greatest gifts we have to give ourselves and others while they and we are alive.

Life Itself Is a Matter of Timing

When I was in about 20, I wrote a song called, "Seasons," looking at the waves and forces moving and shaping our lives....including the actual flow of the seasons. One of the lines I wrote in the lyrics was, "life, itself, is a matter of timing," followed by "and our lives ebb and flow."

Today, my son, Alex, and I were part of the community that gathered at a Memorial Service for a 25 year-old young man who died just about a month ago while traveling in Argentina with his best friend. It is sad to lose a loved one at any age, but for his parents, who have been members of the UU church I've attended for the past 13 years, and his younger brother, this kind of loss is beyond devastating. It just isn't supposed to happen this way.

His parents are wonderful people--kind-hearted, service-oriented, authentic, attentive to their two sons. I know his mom best, and she has a heart of gold. I didn't know her son well, but I do remember him as a 12 year old when I joined the church, and I remember when he read his Credo--the personal statements of values and beliefs that each kid reads when they complete the churches' Coming of Age program, which my now 14 year old son is engaged in this year. A piece of Matthew's Credo--a statement about the importance, power and underlying desire for human relationships between all people--was included in the Memorial Service program and the service itself.

Matthew seemed to, on the one hand, have a deep heart, a desire to serve, the ability to build things with his hands and appreciate the natural world, including its human inhabitants, yet on the other hand, be struggling to find a place where he could set his feet down, grow roots and feel a sense of purpose and meaning for his life.

Though clearly loved by many, and surrounded by lots of love, some place deep inside of him must have been horribly dark and lonely. Matthew died at his own hand. He took his life.
Thanks to the information that passes through a loving community, I learned he had hung himself.

And that brought up even deeper sadness for me. Though I was not inside Matthew's heart or mind and have no idea what his personal demons were, when I was 13, I was deeply despairing, felt all alone and in spite being externally known as "the class president" and "the brightest girl in my grammar school," one day when almost no one was around after school, I took hold of one of the long ropes that hung from the school windows, tied it into a noose, and prepared to hang myself.

I was standing on a desk or a chair, so that if I jumped off, I would be suspended by my neck, hanging on the rope. Someone walked in and found me. I was too deeply into my own trance of despair and heartache to remember who it was, a custodian, a teacher or some random staff member of the school. All I know is someone found me and stopped me. And I remained in a catatonic state of shock for a long while afterward, including the shock of the school's reaction to my action: pretending it never happened and that everything would go on as usual, ignoring and moving beyond my act of desperation and pain.

Had I been alone in Argentina, my life could have ended the way Matthew's did, with no one finding me until it was too late. But while someone stopped my actions, no one really FOUND me. I don't know if the school even officially dealt with the reality that a star student was that miserable to have attempted such an unthinkable act. Did they tell my parents? Not that telling them would have done any good. I remember dissociating at a town governance meeting later that year, and telling the adults there that I was not feeling well and to please take me to the hospital. Instead of honoring my wishes, they took me home. That only made things worse.

I was not surrounded by a loving community. I did not have an emotionally safe place to go. Yet nobody saw my despair. Nobody saw my isolation. And my attempts to reach out, to get help....or to even try to end my pain....were ignored, because they "didn't fit" the image of who I was, or at least how I was supposed to be, or what anyone else was equipped to deal with. I guess some dark places are just too hard to see.

Yet, somehow, in spite of the depth of the pain I suffered, and the invisibility of my pain to others, I am still here. And Matthew is not. I do not pretend to know Matthew's inner story, and in every way, it could be completely different from mine, somehow I faced death at my own hand, and managed to live. He faced death at his own hand, and he has died.

As I got older, my suicidal impulses had other expressions, including anorexia at 13, and being externalized in an attempted rape-murder attempt on my life at 16. When my suicidal impulse was externalized, and someone ELSE was trying to kill me, not me, I finally realized that this life and death stuff was serious business and I really WANTED to live. I did have a sense of mission, scary as it was to commit to it, and I did choose my life. And since the time I was lying on my back in the alley with the stranger trying to rape and murder me, I have never wanted to end my life or die.

Yet, I am struck by how much life, itself, IS a matter of timing. A school staff member found me, in time. A car came down the alley as the attempted rapist/murderer was making what I thought would be his final attempt at ending my life, and scared him away. I was anorexic at a time when a major research project was being done on very bright women from critical families that starve themselves, and I was sent to the project leader. Even the fact that women get pregnant every day, and carry children to term and that children grow into adulthood is full of those magical moments where life wins.

I am very grateful that, somehow, in spite of all the pain, trauma and suffering I experienced that made me want to end my life, I managed to, in time, learn that life itself is a gift. I am very sorry that even with all the love around him, the timing swung in such a sad direction in Matthew's darkness hour.