The Distressing Decision to Order Hospice
Care for a Person Living with Dementia

By: Marie Marley

What are the signs and symptoms that a person living with Alzheimer’s disease is eligible for hospice care?

What happens when your loved one is ready for hospice care but you aren’t?

I’d like to share my personal experience with this situation with you.

According to Gregg Warshaw, MD, Professor of Family Medicine at the University of Cincinnati and former President of the American Geriatric Society (personal communication), the following are some signs that a person with Alzheimer’s is eligible for hospice care:

1. Two or more episodes of pneumonia or other serious infections during the past 6 months
2. Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10 percent or more over the preceding 6 months
3. One or more skin pressure ulcers that are not healing

Ed had been declining rapidly, which concerned me so much that I had a talk with the Assistant Director of Nursing at his facility about it. She had spoken with the Medical Director, who’d confirmed that Ed did indeed qualify for hospice services.

After our talk I just roamed around the facility aimlessly like a lost child. I couldn’t believe what I’d just heard.

The very word hospice scared me.

The news forced me to realize that Ed was, in fact, dying. I had been in denial about that, but the denial was gone forever.

I felt like signing the papers would be tantamount to signing Ed’s death warrant. I knew that wasn’t true but it’s how I felt.

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 later realized, however, that I was the one who wasn’t quite ready for it.

I made an appointment with a second colleague who was a faculty member at the University of Cincinnati. I had so many questions.

At times during our talk I realized I was actually holding my breath. I struggled to pay attention. As I saw it the only purpose of our discussion was to learn more about Ed’s impending death.

But when he 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 really turned me around. Instead of fixating on Ed’s impending death, I began thinking about his remaining life and what I could do to bring happiness and joy to his final days.

Once I started doing that I felt much better and Ed and I had a beautiful conclusion to our long life together. ■

Marie Marley is the award-winning author of the uplifting book, Come Back Early Today: A Memoir of Love, Alzheimer’s and Joy. Her website (ComeBackEarlyToday.com) contains a wealth of information for Alzheimer’s caregivers.