Family members and friends of a terminally-ill loved one face many painful emotional issues. These include communicating the diagnosis to others; overcoming denial that the person is, in fact, near death; feeling the need to "be strong" and hide their sadness for the benefit of the patient and others; dealing with anticipatory grief; handling the physical and emotional exhaustion of intensive caregiving; and deciding when or whether to engage hospice care services.
I want to share the experiences I had near the end of my beloved Romanian soul mate's life. First of all, I was in denial. Even though Ed's medical team at his long-term care facility told me it was likely that he would pass away within six months, I continued behaving as though he would live another year or two, or even more. I even did extensive long-term financial planning to make sure he wouldn't run out of money if he lived another three to five years.
I did eventually overcome my denial and decided to call in a hospice organization. But the very word "hospice" scared me. I was frightened just to look at the marketing materials from the hospice director. I felt as if ordering hospice care for Ed would be tantamount to signing his death warrant. I knew that was ridiculous, but that's how I felt.
I delayed the call for weeks, telling myself he didn't need it quite yet. The truth was that I wasn't able to deal with it quite yet. Seeing how weak and frail Ed was, I finally felt compelled to take action.
I consulted Dr. Doug Smucker, a colleague who was a family physician at the University of Cincinnati and who was specialized in end-of-life care. I had a million questions about how he expected Ed's decline to progress and I needed advice regarding the multitude of issues involved in end-of-life care. I wanted to know about ventilators, antibiotics, DNR (do not resuscitate) orders, living wills and so many other things.
I also wanted to know how much longer he thought Ed might live, what specifically he might die of, and what signs I should look for that would indicate the end was imminent. And I had a lot of questions about hospice care, including whether I could stop it if I changed my mind later. (He told me I could stop it at any time, for any reason, and that if I changed my mind again, I could resume the services.) The conversation was incredibly stressful. At one point I realized I was holding my breath.
After answering all my questions, Doug looked at me kindly and said, "You know, Marie, the real question for the caregiver is how to help the patient have the highest possible quality of life in the time that is remaining."
That completely changed my thinking about the situation. It gave me a new and positive goal - to bring Ed as much happiness as possible. It led me to think about all the special things I could do for Ed -- visiting him more often, taking my little Shih Tzu to see him, having that violinist come back and play another concert, reading to him from the New York Times, and buying him even more of the stuffed animals he loved so much.
After that talk, I spent many hours pleasantly thinking up special things to do for and with Ed. Once I got my mind off his looming death, we were able to have a beautiful, pleasurable months-long conclusion of our life together.
For more about Ed read my award-winning book, Come Back Early Today: A Memoir of Love, Alzheimer's and Joy, and visit my website, which has a wealth of information about Alzheimer's caregiving.