Caring to Care

Not a day goes by that I don’t thank God for the field of work that I have been placed in.  While some may think that being a manager for a Hospice would be depressing and sad, I have found that it is quite the contrary.  Uplifting and well, sad at times…but the joy of making a difference in so many  lives makes the sadness worth it.  I have learned so much about life and love in the past 10 years and a lot of that knowledge has come from hearing about and sharing in the lives of others at a time when they are most vulnerable.  Every once in a while I get to meet a patient.  It’s rare because I am not clinical.  But every once in a while I might get to make a delivery of something to one of the nurses who is with a patient.  To see up close and personal .  It always reminds me of the weeks I sat with my own mom when she was dying. Some of the most precious hours of my life were spent at her side while she prepared to go home. More often I am the voice on the phone to a family member calling to inquire about hospice or seek advice from the nurse about a new symptom their loved one is experiencing.  It is in those moments that I can truly empathize.

 Mostly I hear about the patient by living vicariously thru the nursing and clinical staff as they relate the information about the patient in our team meetings.  It is there that you learn about the place that a patient is in their spiritual journey or in some cases that they have no belief at all in what comes next.  It is in this m eeting that you hear about the family dynamics and what we as a team are doing to help address those issues that arise.  It fascinates me to sit at the table, next to such an amazing group of individuals, all of whom have chosen Hospice not for the monetary rewards but for the Heart rewards that invariably come from serving others, as they figure out what medications, what frequency of visits, what a volunteer could do to help the family, even how far they have gotten in the funeral planning phase.  It is a snapshot of a life lived, a life that has received the acknowledgment that that life is at a close. 

Through the years I have learned a lot of medical terminology thru osmosis.  I know that a coccyx is a butt and not what I thought it might be.  I know what pitting edema, and fast score 7b and what tid and bid and qid mean. If I had to start over in my life, I might have become a nurse or even a doctor.  I have found that I am able to listen to discussions of bowel movement consistencies and descriptions of wounds without the gag response kicking in.   I find it all fascinating, this human body and the way it works, or stops working.

The last few weeks have been a little challenging emotionally as we have ministered to patients who are close to my own age.  With these people, young and whose lives are being cut way short, its impossible not to put yourself in their shoes and realize that it could be me.  The woman who had 2 sons about the the same ages as my own who was dying.  I couldn't help but think about how my own sons would feel if I were leaving them behind.  Or the couple who were newlyweds and had spent all of their married life in clinics and hospitals and doctors offices only to find no cure and having nothing left to do but say their goodbyes and prepare for his inevitable passing.

And then there are the older patients.  The couple who have spent 62 years together, with the last one being pretty tough as the man doesn’t know who his spouse is anymore. The 100 year old woman whose mind is sharp as a tack but whose body is simply worn out who questions “why am I here”, my friends and family are all gone.  All with a poignant touching story of their life and how they ended up in the place they are and what legacy they will leave behind.

When I was laid off from my Hospice job last year, my world seemed to crumble around me.  It was much more than a job loss.  And all those months of job hunting and interviews and rejections that served to make me question my own value.  And now I look back and see that the reason I didn’t get the jobs are as clear as the reason I am where I am now.  God has called me to Hospice.  To be a part, albeit a small one, of the  lives of the dying.  I wouldn’t have been happy doing accounts payable for the Parks and Recreation, I wouldn’t have been happy doing payroll for the Fire Department, and I wouldn’t have been happy to be working in the Assessors office.  I am where I am because it’s where I am supposed to be.

One of my co-workers remarked to me yesterday that my spirit and laughter has brought energy and light into the office where death is a daily fact of life.  That was one of the nicest things I’ve ever heard.  Its easy to be that light because I care so much about the  people that I work with, from the owners who started the hospice from personal experience and put all of their own money into the first years  of the business to the nurses who all have had a personal Hospice experience that motivated them to be what they are today to the chaplains and the social worker and the volunteers.  There isn’t a single person in the group that is there for the money.  The paycheck is the icing on the cake.

Today I read a story about a hospice that had gone above and beyond.  It wasn’t our hospice.  But it could’ve been.  Because we get it.  We understand the importance of saying goodbye and of letting go. We hear the last requests and we honor the patients desires as best we can.    I share it with you now because I found it to be so incredibly moving..and so familiar.  It is what we do for others that counts. Because in giving of ourselves, the true reward is found .  The smile from the alzheimers patient who hasn’t spoken or smiled in years.  The whispered I love you from the patient barely able to speak, the simple I care that we demonstrate in so many ways every day.  Here’s the story.  Hope it touches your heart and gives you a better understanding of why I do what I do.

… Helping Make the Best of the End of Life

A palliative care success story RICHARD GUNDERMAN AND PEG NELSON

Bettie Lewis was dying of metastatic cancer. Like many people coming to the end of life, she harbored two great fears: uncontrolled pain and abandonment. Though she was not completely comfortable, her pain was well controlled and causing her little distress. She had also developed confidence that her family and the team caring for her would remain with her to the end. She would not die alone. Yet she was deeply anxious that she would not survive long enough to see her soon-to-be-born grandson.

Skipping to the end here: (the middle of the story is about the importance of palliative care in a dying patient)

                                                                                                                                                                             In the case of Bettie Lewis, it soon became clear that her cancer had advanced too far. She would not survive long enough to welcome her unborn grandson into the world. In terms of her greatest wish - to see him - the situation seemed hopeless.  The team could invite her to dictate a letter or record a message for him, but she would never be able to see him with her own eyes. Yet the team did not adopt an attitude of futility and resignation.          

Instead they put their heads together and came up with an innovative proposal, to which the Lewises gave their enthusiastic consent. Mrs. Lewis could not leave her room, so they wheeled an ultrasound machine to her bedside. Her pregnant daughter lay down in the bed beside her. Then, as grandmother and mother held hands, a physician patiently introduced "Aiden" to them both. No formal request for an examination was submitted, no bill produced, and no interpretation rendered. 

But for more than an hour, Lewis's eyes were glued to the screen. She witnessed her unborn grandson's heart beating, marveled at his exquisite fingers and toes, and delighted in his beautifully healthy body. She gazed transfixed on his face.  Seeing Aiden not only made her day. It gave her the peace she desperately longed for.  Her family and the health professionals with her will always treasure the experience.

The event was also photographed. Some day Aiden will have the opportunity to see his grandmother meeting him. In this way, her dying represented much more than the mere cessation of biological functions, but a lesson in love living on