Starting Hospice Care for a Loved One

By Marie Marley, KCH Volunteer
Published:  July 12, 2022

What happens when your loved one is ready for hospice care but you aren’t? I would like to share my personal experience with this situation, when I lived in Cincinnati.

Ed, my Romanian soulmate of 30 years, had been declining rapidly, which concerned me so much that I had a talk about it with the Director of Nursing at his memory care facility. She had spoken with the Medical Director, who’d confirmed that Ed qualified for, and would likely benefit from, hospice care.

After our talk I roamed around the facility aimlessly like a lost child. I was in a fog as I walked to the parking lot. I couldn’t believe what I’d just heard. Hospice. The very word scared me. The news forced me to realize that Ed was, in fact, dying, and that it might be sooner than I’d expected. I had been in denial about that. I felt as though signing the papers would be tantamount to signing Ed’s death warrant. I knew that wasn’t true, but it’s how I felt.

Marie Marley (left) with her partner of 30 years Ed (right) the year he died.

In the days that followed, I thought a lot about the decision I was facing. During each passing day I convinced myself that Ed wasn’t quite ready for hospice care. I realized, however, that perhaps I was the one who wasn’t ready for it.

In desperation, I made an appointment with Dr. Doug Smucker, a colleague at the medical center in Cincinnati where I was employed. Dr. Smucker specialized in issues related to end-of-life care. I had so many questions for him about hospice services, death and dying. 

At times during our talk I realized I was actually holding my breath. Thoughts swirled in my brain, and I struggled to focus on the discussion. As I saw it the only purpose of our talk was to learn about Ed’s impending death. I wanted to know more about: approximately how soon he might die, how he might die, and so many other things about his coming death.

But when Dr. Smucker had answered all of my questions, he looked at me kindly and said, “You know, Marie, the real question for the caregiver is ‘How do I help this person have the highest quality of life possible in the time that’s remaining?’”

That opened my eyes and prompted me to think about Ed’s situation in a new light, focusing on his remaining life rather than his impending death. I began thinking about what I could do to bring joy to his final days. I decided I would visit even more often; bring my little dog, Peter, whom Ed adored; buy him more stuffed animals, which always delighted him; have that violinist come back—wearing a tux—and play another special concert just for Ed in his room; read to him from the New York Times, and bring him more of his favorite dark chocolate and other beloved foods. 

Once I started focusing on the happiness I might bring to Ed’s remaining time, I felt so much better. After a couple of weeks, I called a hospice provider and calmly—though with a certain sadness—signed the papers. I was comforted by the fact that, due to his dementia, Ed wasn’t aware he was entering his final days.

I was so glad I’d had that talk with Dr. Smucker. It provided me with guidance and great comfort. I was also happy I engaged the hospice organization. The hospice nurses, chaplain, social worker, aides and other personnel were all wonderful and provided outstanding services to Ed and helpful support to me. In addition, Ed really enjoyed the extra attention! 

Ed lived another four months, and we had a beautiful, pleasurable conclusion to our long life together.

Marie Marley is a Kansas City Hospice volunteer and author of the award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy.

Leave a Comment

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