Regina's Reflections

Hospice...
is for The loved ones left behind.

I am asking the readers’ forgiveness and once more indulging me as I again bring up the recent death of Rosemarie Lyons (see page 4) Larger than life, a brave survivor, courageous, loving, spirited and now, very sadly, missed by so many.

As our readers well know, hospice is an essential component of our work. Physically and emotionally draining on occasion, supporting the family and loved ones as their parent, sibling, spouse, partner or friend spends their final days, weeks, months, or even years on earth is truly an honor. A privilege. It is also at times demanding, unpredictable, sad, fulfilling, and finally peaceful.

We often hear, “Isn’t it Depressing? Sad? Exhausting?” For the loved ones, of course, but not for us. Except exhausting. It IS exhausting. And supporting our caregivers during this time is a critical component in our hospice supportive care.

Traditionally, we have been frustrated by extremely short hospice stays, those lasting a mere few days. What can we really accomplish in a few days?

A few days with Rosemarie, a beloved family member, became a lesson in proving us wrong. With a magnificent supportive hospice, a devoted daughter and daughter in law, and very limited time, everyone stepped up. Terminal end stage cancer leaves no time.

We moved swiftly …Out of the hospital as soon as hospice referral made, the hospice nurse arrived at speed of light and gently answered all our questions, never once assuming I should already be well versed in hospice care. Hospital bed in place, daily visits by remarkable, smart compassionate nurses, and Kelly, Bonnie and I, along with Rosemarie’s beloved dog Tortilla rarely left her side. Usually more energetic, Tortilla immediately took on a calm persona as she sat or lay near Rosemarie. Dogs always know.

When family members are also caregivers, especially in a very short time frame, every hour is critical. What would Rosemarie want? Tortilla on her lap, time on her porch overlooking river, a peaceful quiet environment with her loved ones. Walking when she was able. Eating, sleeping was not a priority for us. A few hours of sleep for me, none for Kelly or Bonnie.

Thanks to her loving family of caregivers, I saw no pain, no discomfort, no hallucinations, often seen toward the end of life. And finally, a peaceful end surrounded by people who loved her. A Good Death, as we like to say.

But not for those left behind. There is only more exhaustion, profound sadness, emptiness, with little direction or motivation. Yet there are many more tasks requiring attention. At this point, distraction is a gift.

As always, there are lessons:

• We care for families, loved ones, not just the patient.
• Our caregivers need more support at all stages.
• Even during Covid, hugs are important.
• The end of life even when lovely and peaceful, is always heartbreaking.
• No one should be alone during actively dying time.
• Healthy family caregivers can survive a few days with neither food nor sleep. Alcohol is fine.
• The dying can actually feel love as it surrounds them.
• I have no scientific basis for this. I just know.
• Families need to be encouraged to reach out to us for anything they may need.
• And finally, this is our most important work. Also, our best. ■

“How lucky I am to have something that makes saying
goodbye so hard.” ~ A.A. Milne.