Saturday, March 1, 2014

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.

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