American Hospice Foundation, Washington DC, USA

After a few close friends and my gut convinced me, I Googled "Hospice" and found several facilities close to my home and work.   I called one and was forced to leave a message.  I called another and promptly was transferred to the executive director, Cindi. I explained, with a significant amount of urgency, that I needed to meet in person to discuss my husband’s illness and the need to employ at-home Hospice care for Jim.

            Three hours later, I was in Cindi’s office pouring my heart out.  Less than chronologically, I pointed out that Jim was diagnosed with stage IV metastatic renal cancer on March 14, 2007, about seven months earlier.  Since that time, I said, Jim had undergone surgery to remove and replace his C-4 vertebra, endured three weeks of radiation directed on his neck, suffered through experimental chemotherapy – a promising new drug specifically designed to target advanced renal cancer cells – and, most recently, experienced two hospitalizations due to infection resulting from a very low white blood cell count.

            Cindi merely nodded and asked that I continue.

            So I did, and I explained that Jim’s oncologist was hyper-optimistic and never discussed or even broached the subject of Jim’s inevitable death.  In fact, the doctor’s entire staff seemed to be death-phobic, yet it was a cancer center!  I was Jim’s wife and lived, breathed, ate and slept with the man; I knew he was going to die.  Jim, I feared, was not going to be one of the lucky ones who are privileged to experience a miracle.  With conviction, I told Cindi I knew it was time for Hospice.

            The next hour or so (and it was well past the end of the work day) Cindi explained what her organization could offer Jim and me, how her team worked, what the next steps were, and how I should prepare for the conversation with Jim who was reluctant to discuss anything but a cure at this point in his diminishing life. 

            After a couple of hours of intensely emotional discussion, I left Cindi’s office with a sense of resolution to talk to Jim and our respective families about engaging Hospice.  It was early October; the leaves were rich with the colors of autumn.  Like the imminent change of seasons, I was feeling like Jim was reaching his winter and the urgency to talk Jim about Hospice was potent.

    It took several weeks to really connect with Jim on this point, but when the opportunity finally materialized, I held Jim’s hands in mine, looked him in the eye, encased him with all my love, and said, "Jim, it’s time we bring Hospice on.  This is so, so hard for me to talk about because it feels like I am betraying you, like I’m giving up on any hope we still may have.  But, with each day, I see you grow weaker and weaker, and I truly believe we need the help, that I need the help."

            I think I mumbled something else, but was drowned in my sobs and was completely inaudible.  Still, I got out what I had wanted to say since my initial meeting with Cindi.  And, thanks to her coaching, I made sure what I said was simple, to the point, and most importantly, from my heart.  

    Jim responded with barely a whisper, "Meegie, I’m scared." 

    We cried together and held each other for the remainder of the afternoon.  We moved from the topic of Hospice to stories from our past; funny stories, sentimental stories, and stories that I now see are the thread with which the quilt of our life together was stitched.

    It is this gift of precious time with my husband for which I am eternally grateful; a gift that I know our Hospice team facilitated. 

    Because I had taken a personal leave of absence from work beginning October 1, Jim and I spent each and every moment of every day together.  With limited doctor visits and only one more procedure that presented small odds of success (Jim wasn’t ready to completely let go of medical options) we had the time to take long drives through the gorgeous mountains of Colorado, even once to Wyoming.  We spent time in our lovely back yard, playing with our elderly dogs, often reminiscing about their puppyhood.  We frequented our favorite restaurants, though rarely ordered our favorite dishes now that Jim’s appetite had declined.  Window shopping became a ritual, not only for the eye candy, but because the large indoor mall doubled as our gym; we made sure to walk the entire facility at least once.

    And, oh, the evenings!  Tender, loving, frightening, authentic.  Without the chaos of medical appointments, labs, transfusions, and the whirlwind of everything that necessarily coincides with cancer treatments, Jim and I had time to reflect and simply be with each other; time that would have been robbed from us had we continued to pursue "treatment" and not engage our Hospice team who most definitely are angels on Earth.

    Three weeks before Jim died, my brother offered us a wonderful gift:  He took us to Mexico for four days!  We stayed at a sleepy little condo right on the beach where we spent warm days and nights (it was freezing back in Colorado!) talking, napping, and simply being with each other.   The timing couldn’t have been better; by the time we left, Jim’s edema was ravaging his legs and moving into his abdomen.  We had grabbed the very small window of opportunity and took total advantage of it!  What memories I have of that bitter-sweet trip to sunny Mexico...

    I never would have dared traveled with Jim outside the country if not for the encouragement of our Hospice team.  Their professionalism and expertise, combined with their compassion and love allowed me to look past the risks of such a trip and take the plunge with Jim. 

    Jim was able to enjoy Christmas that year; we celebrated Christmas Eve at my dad’s home and we hosted a Christmas potluck at our house for Jim’s family.  Though weak and quite anemic at this point, Jim managed to smile, joke around, and truly live in the moment on this very special and memorable Christmas.

    Jim’s health seriously declined after the holidays; he grew more and more anemic, his appetite was all but gone, and he was experiencing more pain and discomfort.  Jim’s Hospice nurse, Aimee, became a fixture in our home during Jim’s last week and offered us more care, support and compassion than any medical professional we had encountered throughout Jim’s treatment. 

    Aimee was with us the day Jim died.  His symptoms grew worse and he needed more medication and care.  Aimee came to the house in the early hours of that day and helped me with the doses and delivery; I could barely think at that point.  Though she had another visit she was required to pay that morning, she returned to the house but Jim already had died.  Still, she helped me bathe Jim, dress him, and change the bedding.  She was so very gracious, loving and compassionate.  Tears come to me as I write these words about Aimee; not tears of sadness, but tears of gratitude for having been blessed with such a loving person who was charged with caring for my husband, best friend, my soul mate.

    My heart holds a special place for our Hospice team for it is they, and not the plethora of doctors, nurses, lab techs and assistants, who assisted Jim and me in a very special and wonderful dying process.  I look back with no regrets about Jim’s last few months; rather, I am grateful for that time and Cherish every moment.  I know for a fact I would not be saying this if not for our Hospice team and their sincere commitment to helping families through the dying process. 

    "Thank you" never will be enough.  Thanks to our experience with Hospice, I am dedicating the rest of my life to Hospice awareness and advocacy in whatever form.  I feel "called" to communicate our story so that other families like mine may experience a good death and dying process, and not the frantic, hysterical and deeply troubled situations all too often experienced.

-Megan