A passage of life baby boomers are confronting

One thing almost everyone goes through is something most baby boomers are going through right now: the deterioration and, eventually, the deaths of our parents. Lorie Eber, who is a professional wellness coach in Irvine, California, went through it and from some bad experiences, learned some good lessons. As she says, A Good Death is Hard to Come By.

A few weeks ago my beloved Dad died. He was 96. I mistakenly assumed that his well-documented wish to die in peace would be respected. Far from it. My purpose in sharing this story is not to malign the medical community, but to put all boomers on red alert as they go through the rite of passage of losing their parents. We live in a death-denying culture.

Dr. Lorie Eber with her father in 2012.

Dr. Lorie Eber with her father in 2012.

I was Dad’s caregiver for fifteen years, making sure that nothing bad happened to him in the care community as he sank deeper and deeper into the quicksand of dementia. When he was still of sound mind, he told anyone who would listen that he just wanted to be “left alone” when the angel of death came to take him away. He sported his DNR bracelet — “Do Not Resuscitate” — as a badge of honor.

As it turned out, I had to fight a pitched battle to ensure that he had a good death. The medically trained staff treated death as an insidious enemy to be resisted and stomped out, much like the Ebola virus. My Dad was lucky that he raised a pit bull of a daughter.

I can describe the ordeal in steps …

Lorie's father as a young man.

Lorie’s father as a young man.

1. Let’s Deny Him Morphine

​Getting Dad back on hospice, so that morphine would be readily available for pain, should have been a mere formality.
When he took to his bed, stopped eating, refused fluids, and could no longer swallow, I assumed it was a matter of paperwork. Yet, when I met with the hospice RN, he shocked me by confidently proclaiming, “Your dad will never qualify for hospice” after skimming the chart for under two minutes. I eventually succeeded in getting his snap judgment overruled, but only after spending hours on the phone pleading with his superiors. My Dad proved the RN wrong. He died within five days of the misevaluation.

2. Let’s Take Dad to the ER

The Licensed Vocational Nurse panicked at the thought that my dad might die on her watch. She phoned the on-call doctor and got an order to take him to the ER. Such a recommendation was ill-advised on so many levels: Dad’s body was shutting down and rejecting fluids, he was on hospice, and a hospital is the last place to take a confused person. As you can imagine, I rejected the suggestion, but wondered how many family members would be able to say no to a doctor’s order.

3. Let’s Shove Some Robitussin Down His Throat

My dad could no longer swallow. Nonetheless, when I went to check on him a few days later, the attending nurse was in the midst of valiant efforts to force-feed him sips of Robitussin, which he promptly spit back at her. I ordered her to cease and desist.

Lorie's father Manny on his 90th birthday.

Lorie’s father Manny on his 90th birthday.

4. Let’s Try an Antibiotic

I received a call from the nurse informing me that the doctor had written a prescription for an antibiotic because Dad “might have pneumonia.” It was clear to me, and would have been obvious to the physician, had she bothered to come and see her patient, that Dad’s body was shutting down. So what if he had pneumonia? Again, I rebuffed the MD.

5. Learn from My Experience

If you’re willing to be demanding and uncompromising, you can defy the odds and achieve that pain-free death we all want for our loved ones. Here’s how:

  • Understand that medical training teaches practitioners to do everything possible to eke out even one more day of “life.”
  • Educate yourself about what the body does when it’s shutting down.
  • Don’t assume that medically trained personnel know “what’s best.”
  • Channel that demanding, obnoxious New Yorker who always finds a way.

8 Comments

  1. My dad died at the age of 59 when I was 25 and my mom died when I was 47. Anyone reading this- cherish the time you have with your parents, BE THERE for them their whole lives and not just show up at the funeral, and make them an integral part of your life. Your life will be richer for it as will theirs and your own children’s.

    1. Hi Terri,
      Great advice! I was so lucky to have my Dad for 96 years. Luckily, I did appreciate him and frequently expressed my love to him.

  2. This is a frightening story–not just as a cautionary tale for those who have others we look after, but as a red flag for our own end-of-life treatment.

    We recently redid our wills in a new state. Our attorney, who’s a really thorough guy, told us that the “do not resuscitate” order is NOT enough to guarantee our wishes. He gave us two pages of specific medical decisions to choose and sign, including all of the situations mentioned above. He told us to keep a copy handy, have one with our medical records at our doctor’s office, and be sure a loved one has a copy.

    I’m not sure why your dad had to be put “back” on hospice–why he’d been taken off–but he certainly qualified. I guess that means we better understand what the hospice “rules” are before choosing one–something anyone needing their help would not be in a position to manage alone. Your dad was fortunate he had a bull terrier on his side. I hope I’m as lucky.

    1. Hi Nancy,
      Thanks for your comments. My Dad was appropriately taken off hospice because he remained stable for an extended period of time. Medicare is cracking down on hospice related to dementia and Alzheimer’s. But, as soon as he was clearly declining again, there was no question that he qualified again. I just ran into an obstinate nurse.

  3. What a terrible experience, Lorie, and how I feel for you! My mother who was 101 just died in March, so I know what you went through (I looked after her for 20 years since my father died in 1995) and I totally agree with what you say. And it needs to be said: when people’s bodies “shut down” as you put it, they should be allowed to die in peace, comfort and dignity. Not living in America, I’m not sure what the word “hospice” refers to but it sounds like a place where someone is “accompanied” through the (often long) process of dying. The accompanying is terribly important, everything must be done to ensure that the person goes through a peaceful, dignified process of passing away, without any undue therapeutic efforts getting in the way; after all, in conditions like your father’s and my mother’s, all such efforts are totally inappropriate and doomed to failure from the start. My mother lived at home and was attended by a remarkable nurse who’d seen other very old ladies through to the end of their lives, she had the necessary experience. She knew how to keep my mother as comfortable as possible till the very end and had “tricks” I would never have thought about. Because it was just as you describe it, her body was simply shutting down and she wanted to be left in peace. That wish should be respected. Always.

    Thanks for sharing your experience!

    1. Hi Claude,
      Thanks for your sharing your experiences. Where do you live? Hospice is comfort care administered in any location (at home, in a facility, etc.) by a care team. It is intended to make sure that the patient is comfortable and not in pain as the body shuts down. It demonstrates a choice to forego extraordinary life savings measurer.

  4. Just now getting to your story. My wonderful Dad passed on February 19th, 2015 at 89. In my Dad’s case, his Advanced Health Care Directive (AHD) was completely ignored by the Dr.s and hospitals until I flew in from Georgia to Texas and took over for my sister who was incapable of pushing back. It was bordering on criminal in re: ignoring the specifics of Dad’s AHD and angered me mightily but I kept my cool and took care of Dad as he wished in writing since he could not talk, at that point. We had an awesome hospice nurse who evaluated Dad in the hospital and she concurred with me on everything . We got Dad into hospice and his last days were peaceful and pain-free and we were there with him every day until he passed. I saw with my own eyes that the Drs. and hospitals will do stupid stuff unless you are there to hold them accountable and stop them. All in all, good advice, Lorie based on my recent first-hand experience with my own Dad.

  5. Hi Uncle Albert,
    It sounds like we had similar, and likely common, experiences. You really have to be a strong advocate to get the medical community to abide by a written directive. Their training all goes in the other direction, plus they are afraid of being criticized for not doing everything possible after the patient dies. Luckily you knew about hospice and had a good experience with it.

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