I resist giving advice.
I relish giving advice.
Both statements are true.
Obviously, I spend considerable time with advice-giving by posting regular essays about hospice. I want those considering hospice (for themselves or others) to have resources during this crucial time. I want to offer suggestions—through questions, concerns, insights—for families currently served by hospice. Whether wondering about odd medical terms or nudging people to be honest about dying and death, I hope my views (advice!) help a few readers.
But advice is inherently tricky. What works for me may not work for you. At times I’ve asked friends if they’d like my advice about a situation they are facing. If they nod assent, I respond with, “Don’t trust anyone else’s advice but yours.” We laugh. We roll our eyes. It’s a joke! However, it also rings true. Follow your heart. Take the time to listen to your inner voice. If you are a person of faith, pray . . . and then be open to the ways the Holy provides guidance. Carefully seek input from trusted family members, friends, and professionals. Cautiously use the Internet with its smorgasbord of bad/good, weird/wonderful, fickle/fact-filled viewpoints. (Which includes my website on advice about hospice!)
When leading grief support groups, I encourage participants to share what works for them. Each one’s story—the successes and failures as they reluctantly rebuild their lives after a loved one’s death—is important. However, there is an ocean of difference between these statements: This is what I did vs. This is what you should do. We should not tell the stories of our anger or confusion or healing in order to convince the stranger next to us to mimic our particular path.
But it’s so tempting!
I glanced at Amazon, using “grief” for a search in their book category. The online bookseller claimed thousands and thousands of grief-oriented titles. “Christian Death & Grief,” “Grief & Bereavement,” and the “Sociology of Death” are just a few of the sub-categories. More new books with helpful (or not so helpful) advice are published every week. Hey, I recently added my swell book to the seemingly endless choices! In the realm of advice, we can become overwhelmed.
In a hospice patient care meeting, one of our social workers mentioned advice s/he* often gave to patients and families. What s/he 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?
- Should I tell my child that I’m dying?
- Is it time for Mom to be in a skilled nursing facility?
- The son who said he hated me wants to visit. Should I let him?
- And more . . .
The social worker said s/he often answers a patient’s question or addresses a family member’s concern with: Do what you think you can live with.
This response is not useful advice for every query. However, I believe it’s a valid response for many of the traumatic and dramatic decisions made before and during time in hospice. No one volunteers to have a terminal illness. But it happens. Those who openly declared in vows that they’ll love another “in sickness and in health” likely hoped to escape the sickness possibility. But bad things find us. Most, if not all, want to painlessly die in their sleep. But many don’t.
It was excruciating for my family to consider putting Dad in a memory care facility. But Mom could no longer deal with him at home. Much of what my parents sought to avoid had become unavoidable. Later, after Dad had lived in the facility for a number of months, Mom shared something with me on one of my visits. In the brief daily 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 was doing 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 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 revoke the hospice benefit because they wish 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, weeks or months later, you return to hospice care, the hospice staff will welcome you and your family back. Hospice is structured so that 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.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)
*Using s/he protects some confidentiality. And, hey, I’ve gotten great advice from the wonderful male and female social workers I’ve known!!by