Why I’m A Hospice Volunteer

| By Jodi Horton

Editor’s Note: For National Hospice & Palliative Care Month, Casa de la Luz staff members are sharing how and why they became involved with hospice care. We will share a few of these stories on this blog in the coming Mondays, and more stories are being shared on our Facebook page.

Thirty five years ago my sister called me.  She had been fighting bone cancer for more than three years.  She told me she had three months to live; the cancer was winning.  “Please come and help me die,” she asked.  I went to Michigan not knowing how I was going to help.

At that time, hospice was not an option.  My sister’s choices were at that time, per the doctor, if you were dying you went to a hospital.  You were put on artificial means to continue living, suffering.  You and your family waited “until your time was up.”  My sister wanted to die at home, peacefully, with no tubes, no artificial means.  She wanted me to find a doctor willing to go along with her wants.  This, it turned out, was quite a task and took me several weeks to find a doctor.

My sister was an intelligent woman.  She had been a law university librarian.  At one time in her life, she had met and talked with Elizabeth Kubler-Ross, the woman who understood dying so well, wrote many books on the subject and tried to get the world to understand her way of thinking.  My sister listened to her every word; she had just been diagnosed with breast cancer.  She was a fighter but as the cancer spread throughout her body, she gave lots of thought to dying.  My sister knew how she wanted to die.

I had many meetings with different medical professionals – mostly late at night, and sometimes in dark alleys.  At the time, this could have been looked upon as ‘assisted suicide,’ which was against the law.  I did find a doctor, though, who agreed to help my sister along with a nurse, who agreed to be there to administer pain medication, as needed.  All of this was on the Q-T.  There were only a few people who knew what was going on. I believe now that we could have gotten in big trouble at the time if the wrong people knew.

My sister was able to die at home with her family around her.  She was in and out of consciousness but there were times when we could talk, she would join in and we even had some laughs.  The day came and my sister died.  But this caused another problem.  I could not get a doctor to come to the house and pronounce the death.  No one wanted to be involved.  The coroner would not come; the mortuary could not pick up the body without a doctor declaring her dead.  Finally, a neighbor, a dentist, came home from work, heard what was happening.  He came over, and he pronounced her dead.

Now we have hospice…with lots of changes for the better.  What my sister went through probably would not happen in this day and age.  Hospice teams go wherever they are needed to care for patients and comfort the families; the volunteer is a part of this team.  We do not get paid with money, but we do get paid in other ways.  Volunteers are a special kind of people.  Not everyone can do what we do; we know that.  The volunteer sits by the patient’s bed, holds the patient’s hand and quietly talks, ensuring that all will be well and that we are there to help in any way we can.  We read to them; we sing to them; we pray with them.  We do whatever is needed to comfort the patient and family.  We are there to attend to whatever their wants and needs could be.

I am a volunteer.  I suppose the experience I had with my sister’s dying had some influence on me.  Personally, I do not like to think of anyone dying alone.  My mother was in a care facility for the last two years of her life.  I saw the other patients that did not have visitors.  I saw the other patients eat alone.  I got to know the other patients when visiting my mother.  It was especially sad at Christmas time.  I made up my mind that when I retired from work, I would try to do something to change what appears to have happened to the generation of old people.  One thing I do is I will go any distance, 24/7 to be with a patient.  I don’t do it because it is “fun;” I do it because there is a reward in seeing a patient smile.  It is rewarding to give someone a hug, someone who is in pain.  It is rewarding to hear, “thank you,” from a soft voice – from someone who knows the end is near.  I receive many rewards being a volunteer.  They far outweigh any inconvenience I may have at the time of the visit; in fact, I don’t even think of my volunteering as an inconvenience – it’s a privilege.

By Diane Gilbert, Volunteer

Note:  Growing up, my mother read to me many poems; she thought poetry was a beautiful way to communicate.  The poems seen among my writings are poems I remember from earlier days when my mother would read to me.  After saying my bedtime prayers, my mother would read me a poem or two.  Sometimes I read them to patients; they seem to have a calming effect.

 

Live Life Today

Live life today as though today were all,

As though this very morning you were born.

Your yesterdays are days beyond recall,

Tomorrow does not come until the morn.

Rest now upon the victories you have won,

Because you lost surrender not to fear.

Your Yesterday was ended with the sun,

Tomorrow has not come.  Today is here.

Douglas Malloch

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