Cyndi’s Story

My name is Cyndi Hodges, and I was a nurse a the local hospital for several years.  I first worked in a cardiac step down unit and then I transferred to the operating room.  I loved the acute care environment, but when I became pregnant with my second child, I decided shift work wasn’t really conducive to the family routine.

I applied for a job with a new home health agency in town.  When I gave my resignation, the physicians and surgeons and supervisors all warned me what a mistake I was making.  They insisted that I would lose all my nursing skills!  That couldn’t have been further from the truth.

Back in 1987, as a home health nurse, I met a patient who really changed who I was professionally.  I was on call for the weekend, and had to admit a new patient who had a new colostomy.  Although I had worked in the hospital for several years, I had not done colostomy care and I was very anxious about my lack of experience.  I reviewed policies and procedures and went to make the visit.  I took a deep breath and thought about the fact that this patient was depending on me.  All the anxiety I was feeling paled in comparison to hers.

That was a pivotal moment for me — when I realized the tremendous responsibility of being a home health nurse.  But with compassion and competence, the outcome was favorable.  I put my feelings on the back burner and together, my patient and I became quite the experts at managing her colostomy.  Before you know it, she was independently managing her care, almost as routinely as brushing her teeth.    I had a hand in it and I couldn’t have been more proud of my skills.  I hadn’t lost my skills at all.  I was developing and increasing my nursing skills –  as a home health nurse.

In the year 200, with over ten years of home health management experience, I was given a new career  – to administer a hospice program.  Hospice was new and foreign and of course death wasn’t anything I wanted to think about in my 30’s, but I accepted the challenge, as a condition of employment.

Not long after getting involved in hospice, I became a consumer of hospice services, myself.  In 2002, my parents died — 5 weeks apart.  I was forced to think about death at that point and I learned a great deal about grief and hospice during that difficult time.   My father had a recurrence of the cancer he had survived for seven years prior.  This time, the prognosis was terminal.  While my sisters and I were at their home in Virginia to help my parents, my mother died unexpectedly of a heart attack – just suddenly dropped to the floor in the kitchen.

Dad lived another five weeks.  He was able to speak openly about his prognosis and provided the ultimate support to my sisters, my daughters and me during the most turbulent time of my life thus far.

I experienced excruciating loss – life changing loss.  Since I was a tiny girl, I remember lying in bed at night and hoping my parents would never die.  All my years of health care and nursing sick and dying people, I tried to distance myself from the reality that one day I would have to face my parents’ mortality.   Those fears came to fruition.  Even with a lifetime of warning that they were human and they would pass one day, it was still unbelievable.

I experienced sudden-unexpected loss with my mother, and I experienced anticipated loss with my father.  Both losses were painful, but I must say, being able to say things I wanted to say to my dad was a blessing in disguise.   That was one true blessing I found in Dad’s terminal prognosis  – the opportunity to talk.

I was fortunate that my dad was able to face death with grace and dignity.  When the oncologist told him his cancer was inoperable and radiation was his only option, he said “I don’t want to spend my last days driving back and forth to the hospital.”    He did choose to continue a once-a-week blood transfusion.  It was helping him maintain some degree of strength.  He and mom owned an upholstery/antique business in their home town of Ridgeway, Virginia.  It was the local gathering place for morning coffee and Hardee biscuits.   Closing the business was really difficult for all of us.  Dad realized that the transfusions wouldn’t sustain him indefinitely, but he wanted the strength and energy to help us as we packed and sold the business — the business that had been his and mom’s life for thirty years or so.

Mom died just a few days after Dad’s doctor visit.  Recognizing our despair, Dad actually was the one who asked for hospice services.  “You and the girls (my sisters and daughters) are going to need some support though this.”  His oncologist, who was the medical director for the hospice there, didn’t bother to consider it.  I, as a hospice administrator back then, failed to consider hospice. (I guess I thought I could handle everything myself.)  But my dad had the foresight and the strength to think of us, when he was the one who was dying.  I also realized that it was comforting to him to know we were going to be taken care of as his condition worsened.

The hospice nurse came out the following week, did an hour’s worth of paper work, and then asked Dad if he was getting any chemo or radiation therapy.  He responded that he wasn’t, but explained that he was getting the transfusion once a week.   She immediately started to pack up her papers, did not proceed with the admission and instead said that she couldn’t admit him to hospice.  She said “hospice doesn’t do blood transfusions,” but maybe home health could admit him. After she left, dad turned to me with a puzzled look on his face and said, “Why wouldn’t she want me to have something that makes me feel better?”

As it turned out, Dad only went for one more transfusion after being turned away by hospice.  As his kidneys failed and he had trouble holding down fluids, we discussed I.V. therapy.  He didn’t want it and repeated that he wanted no hospitalizations.   The hospice nurse came again.  This time we signed papers and he was admitted.  She said she would be back in a week.  We had to call her sooner.  He died within three days of the hospice admission.

Within a period of five short weeks, I experienced the losses I had feared for over 40 years.  And in that window, I learned more about hospice, perhaps than anyone else could have taught me.  I experienced sudden loss – loss that rips your heart to its core.  No chance to say goodbye, no chance to say you’re sorry for whatever — to ask what Mom wanted me to do with her things, to ask about a relative I didn’t recognize in her photo album, to ask her favorite song or book!  Death – so sudden!  So final!

On the other hand, I experienced anticipated loss that accompanies terminal illness.  Still devastating, but there was comfort in having the opportunity to ask Dad questions, to talk openly, to say “I’m sorry” or “I love you” one more time.    Honestly, in neither case did I know I was speaking my last words to them, or hearing my last words from them.   It is my passion and will be for the remainder of my own life, to help people understand the value of that window that is terminal illness –that golden opportunity to express your love and compassion and support without reservation.  Certainly, emotions run high.  There are periods of physical exhaustion.  There is fear of the unknown and there is anticipated grief. Knowing someone you love is dying is life changing.  I know it.  I lived it. Today, I can say I lived thru it.  At the time, I wasn’t so sure I could.

But in those moments of distress, I have many inspirational moments from my time with my dad especially. He remained a logical and educational force in the chaotic health care he received during that time.  “You and the girls are going to need some support.”, “Why wouldn’t she want me to have something that makes me feel better?”

Those statements especially ring in my ears almost daily.   From those words, I found direction and motivation to raise the bar for home and hospice care.   That hospice could have done a better job in caring for my dad.  They could have admitted him and could have been available to him sooner. They really didn’t have to reject him because he wanted the blood transfusions.  There are no regulations that prevent hospices from covering blood transfusions, only policies the organizations write themselves.    I didn’t know that at the time, but armed with my dad’s words, “Why wouldn’t she want me to have something that makes me feel better?” we stepped out of the box, with a new perspective and expanded knowledge.  Can we really be driven simply by making our patients and families “feel better”?  I believe so.  It’s true, authentic, heartfelt care.

So today, I promise you that at Continuum our mission is to make you “feel better.”   That means different things to different people at different times.  You have a life story, and it has a beginning, a middle, and it will inevitably have some sort of end.   We are here for you, whatever the chapter.   We are driven by our own life stories, personally and professionally, and by the needs of the communities we serve.

I also promise to be available to you.  I graciously accept your comments, concerns and/or questions about the care you receive from our staff, 24 hrs/day, 365 days/year.   We do this for you and your input is invaluable.  Thank you for the opportunity to be a part of your life story.  We accept that responsibility and take it very seriously.

— Cyndi Hodges RN, BS
Administration