I avoid giving advice.
I enjoy giving advice.
Both statements are true.
Obviously, I spend considerable time in giving advice by posting regular essays about hospice. Hey, I wrote a book filled with hospice advice. I want those considering hospice (for themselves or others) to have resources during this crucial time. Whether I write about odd medical terms or encourage honesty about dying and death, I hope my views (advice!) help readers.
But advice giving and receiving is inherently tricky. What works for me may not work for you. At times I’ve asked friends if they’d like my advice. If they nod assent, I respond with, “Don’t trust anyone else’s advice but yours.”
We smile. We roll our eyes. It’s a joke!
However, it also rings true. Follow your heart. Listen to your inner voice. If you are a person of faith, pray—and then be open to the ways the Holy gives you guidance. Carefully seek input from trusted family members, friends, and professionals. Cautiously use the Internet with its all-you-can-eat salad bar of good/bad, weird/wonderful, helpful/harmful viewpoints. (Which includes this Substack letter on advice about hospice!)
When leading grief support groups, I encouraged participants to share what worked for them. Every person’s story—their successes and failures as they rebuild their lives after a loved one’s death—is important. However, there is an ocean of difference between someone saying, “This is what I did” vs. “This is what you should do.” We should not tell the stories of our mistakes or successes in order to convince the stranger next to us to mimic our particular path.
But it’s so tempting!
Years ago, I glanced at Amazon, using “grief” for a search in their book category. The online bookseller claimed 26,889 grief-based titles. They had subcategories like “Christian Death & Grief,” “Grief & Bereavement,” and the “Sociology of Death.” Amazon also noted 98 titles labeled as “coming soon.” Want advice? Buy a book. Want to give advice? Write and sell a book. And sometimes, it seems like there’s so much advice, we’re overwhelmed.
I recall a hospice patient care meeting where one of our social workers mentioned advice she frequently gave to patients and families. I thought what she said was as easy to understand as it was demanding.
Every day social workers (along with hospice aids, physicians, chaplains, and nurses) are faced with questions from those they are trying to serve.
When will I die?
How can I tell my child about death?
Is it time for my parents/grandparents to be in a skilled nursing facility?
Will I become addicted to morphine?
The social worker said she often answered a patient’s question or addressed a family member’s concern with: Do what you think you can live with.
Her response was not advice for every situation. However, I believe it’s a valid response for many of the traumatic and dramatic decisions made before, during, and after time in hospice. No one volunteers to have a terminal illness. But it happens. Those who said they’ll love another “in sickness and in health” likely hope to escape the sickness part. Bad things find us. Most, if not all, want to painlessly die in their sleep. Many don’t.
It was excruciating for my family to consider placing Dad in a memory care facility. But Mom could no longer care for her beloved with dementia at home. Much of what my parents sought to avoid had become unavoidable. After Dad had lived in the facility for a number of months, Mom shared something with me on one of my visits. In the short drive from their home of over forty years to his stark, dreary room, she said, “Every time I take this trip, I want to see him and I don’t want to see him.” She hated to go. She hated not to go. She didn’t want him in a place that wasn’t home, but their home was no longer safe for Dad. Or for her to care for him. She did what she could live with, though her decisions were never—never—totally acceptable to her.
What can you live with? In part, we can’t answer because (of course!) we can’t predict the future. But if that question is openly asked in a family, and if people answer honestly, it can provide a framework for making decisions. For example, our patients sometimes revoked the hospice benefit because they wished to pursue a new treatment. Since hospice focuses on comfort and not cure, trying another option means saying “no” to hospice and “yes” to the treatment. The hospice staff will support your decision. And if, days or months later, you return to hospice care, the hospice staff will welcome you and your family back. Hospice is structured so patients and families participate in decision-making.
What can you live with?
We can’t predict the future, but we can carefully seek the advice of experts and trusted family/friends and then make choices—for ourselves, for others—that will give us a chance to make today’s decisions.
++++++++++
My book, A Companion for the Hospice Journey, is available at Amazon.
Photo by LinkedIn Sales Solutions on Unsplash