Category: Death and Dying

When people ask me, “What are you doing with yourself these days?” They never expect me to say that I volunteer for hospice.  The response is predictable:  “Oh, I could never do that.” Truthfully, I wasn’t sure I could either, but I wanted to, and in the last twelve years I have not looked back. 

            Ever since my father passed away thirteen years ago, I have been drawn to hospice care.  My dad did not want to go on hospice, thinking that it would be like giving in.  Giving in to death.  But, as time went on, he prayed to die and yet, according to him, that didn’t work either. “Why won’t God let me die and get out of this mess?”  The praying for death went on for months, but it was not until he gave in and decided to go on hospice care that a change occurred. He gave in to the inevitable, yet as we all know, our timing is not necessarily God’s timing.  I happen to believe that we all have a beginning and ending date that we are not privy to knowing ahead of time.

            What brought my dad to the praying for death was his inability to accept reality.  The nursing home and all that it entails was not what he had in mind for his end of life.  He wanted to be at home, his home, and not among the forgotten.  My stepmother was unable to care for him, and daddy did not want to pay for nursing care around the clock at home.  He did not want to live with my brother or me, he wanted to live and die at home without any hassle or extra expense.  He had a plan, but it simply could not be executed.  He was too sick and a little too stubborn.

            “They’ll park me in the hallway with the rest of the wheelchair people and forget about me.  I’ll just be lost with all the others, drooling in our bibs.”  His attitude and gloomy description of how it would be did not help him acclimate to his elder-care facility.  And so, for a long while he refused to leave his private room, preferring his own company to anyone else’s.  He would prop up in bed and pretend to read the newspaper for hours.  He would religiously watch Wheel of Fortune and reluctantly participate in physical therapy.  When my brother or I visited we would bring him a Blizzard from Dairy Queen, as per his request.  “Nothing tastes good except ice cream,” he would say, but after a few bites, he would tell me to put it in the freezer in the nurse’s station for later.  “Be sure to put my name on it so no one will eat it,” he’d say.  And I would walk down the hall to the freezer knowing that when I opened it, there would be at least five uneaten Blizzards with his name on them, waiting in line to be thrown away.

            When I have had hospice patients in the nursing home, my visits become routine.  My last patient, Eunice, I visited every Tuesday at 9:30 a.m.  After her breakfast, which she liked to sleep through, I would arrive and we would ‘get to doing,’ as she would say.  I painted her nails, we talked about her husband and daughters, and when she was feeling feisty, we would join the group for bingo in the recreation room.  Sometimes we would sit on the patio and just feel the breeze on our faces and hear the faint sounds of traffic or children playing down the street.  And sometimes, when she was feeling brave, I would record her inner thoughts about life and love in a spiral notebook her girls would read one day after she was gone.

            But Daddy had a point about being forgotten.  Even though I was there for Eunice, and my brother and I were there for my dad, there are a number of people who have no visitors.  There are forgotten mothers, fathers, aunts, and uncles.  The forgotten who are parked in a wheelchair by the big screen T.V. playing old black and white movies all day long or lined up in the hallway waiting for lunch.  The forgotten who slowly morph into the invisible.

            When I would visit Eunice every Tuesday, there were other residents that looked forward to my smile and cheerful banter.   I could feel the stares and see the usual neighbors wheeling by us, just to say hello.  “Is this your daughter, Eunice?”  They would ask every week.  They watched me, hoping I would come over to where they were, and oftentimes, Eunice would tell them to go away because we were trying to visit.  She was jealous of our time and wanted it all to herself.  I could see the rejection in their faces and the deep longing to be remembered.

            Being invisible doesn’t happen overnight, it is a slow process of being over-looked, being put on a shelf, or being sat down, both metaphorically and physically.  There are mirrors over the sink in nursing homes, but if you’re in a wheelchair you might not be able to fully see yourself.  Sometimes our invisible ones have not looked into their own eyes in a very long time.  To see yourself as you once were and as you are now, is a reminder that you are still here.  Still the same on the inside, even though the outer shell is changing.

  We are who we are, until the end. 

There are still mean girls and want-to-be jocks in the nursing home.  Another of my former hospice patients, Marilyn, was scorned at the ‘popular girls’ lunch table.  “We already have four sitting here.  This is our table,” they said, so Marilyn was going to wheel herself back to her room for lunch alone.  On the way to the door, she passed a table of three men who stopped her and said, “Don’t let those old biddies get to you, sit with us!  We’re much more fun and twice as nice.”  And so, she did.  Marilyn became the darling of the men’s table and gave ‘the old biddies’ something to talk about.

There are still women with daddy issues and men who are suffering from PTSD. There are still grateful and happy people and there are plenty of people preferring to be bitter and resentful, angry at life.  Even the invisible have issues like my dad did, but if you’re lucky, one day it will change.

            I guess we may never know what the true catalyst of change was for Daddy, and truthfully it doesn’t matter.  One morning he told my stepmother and brother that he would sign up for hospice, that he wanted to look into getting a motorized wheelchair, and that he put his name on the list to play Bridge.  “I guess if I’m not going to die, I better get busy living,” he said. And we all celebrated the victory with a big sigh of relief. 

            Twenty-four hours later, my daddy died.

            Daddy was never forgotten, but it was something he feared.  He had been an officer in the Navy, and an electrical engineer by trade, strong and capable all of his life.  He did not want to be invisible. No one does.

Why do I volunteer for hospice?  If you had met my little friend Eunice, or Ms. Marilyn, you would need no further explanation.  You would have raised your hand high and said, “Pick me!  Pick me!”  As much as I know my visits brightened their days, those visits taught me to ‘get to doing,’ be grateful, and love life until the end.                                           

  It truly is a blessing to walk beside someone whose end of life is near.  It is an honor to share the sacred space of spirit and to be able to provide comfort and companionship.  It is a privilege to help grieving families or simply to listen.

Not everyone who is on hospice care is elderly, but everyone who has lived long enough will face a certain truth, death.  The road traveled will be different for all, yet with the same outcome.  We all have to go sometime, but how we live out our years depends on attitudes, beliefs, family, circumstances, and how we are treated as well as how we treat others. 

Keep your eyes open this week and look for someone who needs to be seen, who needs a hug or even a smile.  Watch out for those mean girls and invite someone to sit at your table, and above all else, ‘get to doing!’