Thoughts on Hospice

Hospice – A Journey of Love
It doesn’t seem possible that almost a year has passed since we received the terrible news that my mother had Stage IV pancreatic cancer.  Even now, after these many months, I still can’t quite comprehend what transpired.  What can you offer someone who receives such a devastating diagnosis?  How can anyone say that there is hope when death is just a few short weeks away?  How do you have any sense of normalcy after hearing the words, “You have Stage IV Pancreatic Cancer.  Maybe up to a year of life with chemotherapy – no more than 3 months without.”  Only those who have experienced such a thing can have any inkling of understanding.  And how much worse it must be for the person diagnosed with the cancer, than for the person who loves her.
When I think back to that bleak day in December, when I remember being at the Cancer Treatment Center, seeing the doctor, holding my mother’s hand during the waiting periods – there didn’t seem to be a lot of hope possible.  I remember, in particular, my mother saying as we were driving home from the Cancer Center, “It is so grey out.  I can’t remember what the sun looks like.”  And I remember feeling how apt her words were – the greyness enveloped everything and there was no hope of the sun ever shining again.
It felt so odd to try and carry on a normal conversation.  Little items that are taken for granted all of a sudden carried a new weight.  No longer could we just assume that next week would be the same as this week.  That next month would still find our family intact.  How do you navigate around such uncertainty, sorrow, and anger?  How do you come to terms with the unrelenting enormity of decisions that must be made?
My mother opted to not receive chemotherapy.  It was her decision and a difficult one for us to hear; we had hoped that she would try at least one round of chemo.  But her reasoning was that she did not want to deal with the side effects of the chemo if the prognosis was less than a year anyway. She was already feeling so exhausted that the thought of experiencing nausea and vomiting after a chemo treatment was more than she could bear.   And she had a deep-seated fear and dread of hospitals, especially needles.  So we held her tight, told her we loved her, and that we would support her wishes.  When we told the doctor her decision, his words were, “Well then, we pretend that the cancer does not exist, we keep you comfortable, and we call hospice.”  When she heard the doctor say that, the tenseness seemed to leave my mother  – and I had the first glimpse that there just might, indeed, be  hope.  It may seem paradoxical and wrong that hope could come from a decision to not try and prolong life; to not fight.  But death would come regardless of the path chosen.  My mother understood that and she chose to face it on her terms.
What can I say about hospice?  This diagnosis of cancer was so strange and overhelming to us.  We felt as though we were groping around in the dark, trying to find our way through a tangled maze of unwelcome emotions and fears.  And the hospice team came in, took us by the hand, and told us that we were not alone.  They could not “un-do” the diagnosis, they could not “cure” the disease, but they would walk with us and offer us help and, yes, hope.
So many memories, so many good moments of that otherwise awful time.  So many things for which to offer the hopsice team gratitude.   From the moment they walked in the door, their compassion and dedication to their mission was obvious.  They talked over issues with us, they called us to check in, they visited weekly – twice weekly.  They took our phone calls when we needed to talk.  They sat with my mother and listened to her.  They tended to her needs.  They tended to the family’s needs as well.  The chaplain came by on a regular basis.  How can I describe the beauty of the Communion service he held in the living room?  The words he said that touched my mother so deeply?  I cannot put into words the sense of peace that was evident after every visit – by the team and by the chaplain.  No other way to say it than to simply state – they loved us and they were with us in our darkest time.
If I had the choice, I would un-do my mother’s diagnosis.  The emptiness in my heart without her physical presence is a real and constant companion.  I miss her so very much.  I will be forever grateful to the hospice team for all that they gave so willingly and lovingly for my mother.  Their care and concern helped guide us through the pain and sorrow and helped us see and appreciate the beautiful moments that still occurred, even during her last days.  The work that they do – it is love.

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.