You know your father is dying. After all, he’s in his eighth decade of life and his Alzheimer’s has caused him to become a “sundowner,” far too awake at night, sleeping during the day.
You know your wife is dying. Even if you avoid the subject, you were both in the oncologist’s office when the worst news was shared.
You know your ________ is dying. After all, she (or he) is being cared for by hospice.
Hospice is for those with six months or less to live. Six months seems brief, but it represents two season’s worth of togetherness, a summer and an autumn or a winter and a spring. It’s good to have six months so the family and friends living in another state have a chance to visit. Six months means you can settle into routines. Six months means you can plan for “last” events and share memories.
Six months rarely happens. Nearly 15% of patients die within 24 hours of entering hospice care. Over a third (34.5%) will die before the first week concludes. The average length of care from hospice (2013 data) is 18 days. However, in the arena of statistics and odds, there are 11.5% of the over one million patients annually served by hospice that live for six months (or even longer).
Most of us imagine we’ll “beat the odds.” Won’t our loved one be in that 11.5%?
We hope so. We pray so. We want more time.
Death surprises us.
One of my colleagues—a long-time nurse—told of a family that was shocked their mother had died so soon. Even with cancer and dementia, her symptoms seemed under control. The family had grown accustomed to what the cancer had done to her body. The “worst” of the disease—which had meant multiple surgeries and a stretch of chemo that depleted her energy—felt like it was in the past. Yes, the cancer was, and continued to be, costly for her health . . . but everyone had adjusted. And yes, there was no doubt that the Alzheimer’s worsened every day. Fortunately for this family, even though Mom couldn’t remember most things, she remained a gentle soul. It drove her husband batty that she was a “sundowner,” sleeping in the day and wandering in the night, but—again—everyone adjusted. The adult children took turns staying at their parents’ home. Everything would work out.
And then she died.
Years of illness. But routines were established. Months of intense treatment. But routines were established. Weeks of hospice care. But routines were established. And then . . .
We didn’t expect her to die so soon!
The death certificate’s cause of death for the mother didn’t list cancer or Alzheimer’s, but bluntly and unexpectedly stated, “acute myocardial infarction.” In other words, she died of a heart attack*.
The nurse who shared about this family identified one of the odd occurrences in hospice. Many families adjust to the demanding care required by a loved one. Routines are established. The outward symptoms are dealt with, whether it’s managing the slowly increasing needs for oxygen, post-surgical wound care, or wrestling with parents who have flipped night for day in their activities. What we see in front of us rightly influences how we think. We are human! We adapt!
But we can’t see (and often don’t want to acknowledge) the heart failing inside the exhausted body. We rationalize the weakening lungs as being “off” today, but tomorrow will surely be better.
If asked, I say my father’s cause of death was dementia. But on the death certificate, he died from “heart failure” because of “sinus bradycardia.” In other words, at 95, his heart gave out. It hadn’t been long before his death that Mom and I (again) discussed his situation. Because of Dad’s dementia, and because he was in a care facility, we tried to anticipate the health and financial uncertainties that would be part of his life—and our lives—in the next months. Or the next years.
When Dad died, even after a lengthy struggle, it felt sudden.
Does death usually feel “sudden?” I think it does for many. Patients and caregivers adapt to the challenges in life. (And won’t we join that 11.5% and beat the odds?) However, it’s nearly impossible to adapt to the abruptness of death.
For everyone, I would challenge you to take advantage of the 100% chance of sharing time with your loved one . . . right now.
*A heart attack occurs when the flow of blood to the heart is blocked, most often by a build-up of fat, cholesterol and other substances, which form a plaque in the arteries that feed the heart (coronary arteries). The interrupted blood flow can damage or destroy part of the heart muscle. A heart attack, also called a myocardial infarction, can be fatal . . . (from Mayo Clinic website)
(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.)
Walk in wood image from here.by