Alzheimer’s Story in a Much Loved Show

by | Oct 5, 2022

Have you ever watched a TV show with a medical story line, and you suspect the information is inaccurate?  I work for The National Marrow Donor Program®/Be the Match®.  Occasionally I have watched a show with a storyline about a blood or marrow transplant, and I can clearly see inaccuracies.

I just finished watching all six seasons of the TV Show “This Is Us” on Hulu.  I enjoyed the entire series and found it worthy of the many awards it won.

In the show, the storyline follows the family as they deal with an Alzheimer’s disease diagnosis of one of the main cast members.  I found the family emotions and reactions to be representative of what a family might experience when someone is diagnosed with dementia. (Note “dementia” is the umbrella term, Alzheimer’s Disease is the most common form of dementia.) I was pleased to learn a neurologist, Dr. Michael S. Rafi of the University of Southern California Alzheimer’s Therapeutic Research Center, consulted on the show.

Without spoiling the storyline for those who have not watched it, here are some of the experiences of the family members after the initial diagnosis of mild cognitive impairment, and the subsequent diagnosis of Alzheimer’s disease.

  • Denial – Are you certain it is the correct diagnosis? Everyone gets a little forgetful!  Surely there is something we can do to change the outcome.  Denial has a strong pull.
  • Isolation – part of the storyline takes place during the pandemic. Obviously, the writers did not anticipate writing the COVID-19 shutdown into the story in 2020-2021, however, they wove it into the lives of the characters in a realistic manner. You could see how difficult a time it was for all of them, and especially for the senior family members separated from the others and dealing with cognitive issues that come with dementia.
  • Fear, conflict, and acceptance – The character diagnosed with the disease demonstrated all these emotions one would expect. 
  • Family conflict – when the cast member with dementia reached a level of acceptance, she called a family meeting, and let the other family members know whom she wanted to take charge as the disease progressed. This resulted in questions and disagreement among the family members:  Why wasn’t I chosen to be the primary caregiver? How will we continue to make decisions as a family? Did the family find ways to effectively resolve their conflicts? (You’ll have to watch and see!)
  • Caregiver strain – The storyline shows how difficult it is to care for a loved one with Alzheimer’s disease, and how it can cause physical and emotional trauma on the primary caregiver. Often caregivers, especially older ones, have their own medical issues, and providing constant care for a loved one exasperates their own problems.
  • Letting go and saying goodbye – I was crying at the final scenes of the story. It was so real, reminding me of saying goodbye to my dad, over and over again.

 I so appreciate the accuracy of the writers and editors, and I hope many people have been and will be educated about how Alzheimer’s disease can affect a family. I also love that as a result of the part she played in the show, the main actress started an organization called “Be Brain Powerful” to encourage people to make healthy brain choices.

Have you noticed unusual behavior in yourself or a loved one that might suggest a cognitive decline?  Is there a recent dementia diagnosis?  Wondering about next steps?  To connect with resources and to learn three important steps to take now visit Nancy’s website.

Where Have All The Nurses Gone?

by | Aug 17, 2022

A Nurse’s Pandemic Story

Comment: I started writing this series of blogs a couple weeks ago. Ironically, 15,000+ nurse in the Twin Cities (Minnesota) area voted to strike this week. Read “Jenna’s” story, one nurse out of thousands, who served us during the pandemic.

Zip back in your mind to mid-2020. It was no secret hospitals, nursing homes, and other healthcare facilities were plunged into a sudden and unexpected crisis. But few of us can truly appreciate the toll it took on healthcare workers, and how the effects linger today.

A primary effect of the pandemic on healthcare workers was the lack of Personal Protective Equipment (“PPE”).  Examples of PPE includes:

  • Masks and face shields
  • Respirators
  • Gloves
  • Full-body suits
  • Helmets
  • Goggles

“Jenna” (not her real name) is a critical care nurse in a major medical center in the U.S.  Jenna thought she had seen everything in her years of nursing, but nothing could have prepared her for the COVID-19 pandemic. Here is an example of a day in her life during the pandemic.  

It was early morning of her third 12-hour shift.  Glancing at her list, her first patient was a middle-aged man we’ll call Mr. H, whom she had come to know well. The unit had converted a family room into a storage room.  Jenna grabbed her zip lock bag and put on her first isolation gown, the N-95 mask, face shield and gloves.  She noticed that although her N-95 had been sterilized overnight, it was sagging from use and re-use.

“Where was the medication for Mr. H?” she mused.  Due to pharmacy-related staff shortages, it had not arrived on time.  Jenna knew she would have to leave the room and come back when it arrived.  “Good morning, Mr. H,” she greeted him with a smile, even though he had been intubated now for two months, his body wasting away, his mind deep in the depths of sedation. Would this be the day she’d hold up the iPad monitor while family on the other end said goodbye? Mr. H was a husband, a dad, a son. Those goodbyes never became easier.

After her assessment Janna took off her isolation gown, placed the N-95 in the take-out container, and wiped down the eyewear as she left the room.  The medication had arrived, so she re-dressed and headed back into the room. She would do this over and over throughout her 12-hour shift, and it would continue for months.

Imagine not only the fear of the respiratory disease killing thousands, but the inability to protect oneself.

Then imagine being on your feet for 12 hours, barely able to breath in the confining masks. And you come back the next day and do it again, and again, and again.

This continued on and on. In December 2020, the New York times reported there was still a shortage of PPE.  PPE Shortages  Add to this the endless, exhausting shifts, and an ever-increasing shortage of workers.

Fast forward to 2022.  Jenna, and nurses like her, anticipated an improvement in patient care. Perhaps staffing and equipment would go back to pre-Covid-19 levels?  Indeed, PPE is more readily available and there are less critical care patients due to COVID.  But when Jenna looks around, she estimates roughly 40% of her experienced colleagues have left. Constantly asked to work extra shifts, her workload leads to numbing exhaustion. Nurses like Jenna, in her 60s, think every day about early retirement.

I look at Jenna, there is a new sadness in her eyes.  She is angry about the people who would not get vaccinated, and ended up in her critical care unit. She is frustrated by the on-going staffing crisis and allocation of resources. I asked her if she has Post Traumatic Stress Disorder (“PTSD”), she replied “I’m sure I do.”

In March 2022, global analyst Walter Kluwer reported, “What nurse leaders should know about PTSD in nurses during COVID-19…over 1/3rd of nurses reported PTSD syndrome signs.

“Two years later, nurses and healthcare workers continue to face tremendous pressure and stress to effectively treat patients diagnosed with the virus, resulting in increased rates of mental health disorders, including post-traumatic stress disorder (PTSD), among frontline healthcare workers.”  Walter Kluwer

Could you blame Jenna, and many other nurses like her, if they left their job? What is the mental health of our nursing staff worth?

Sadly, this crisis is not just nurses; there is a shortage of physicians, pathologists, neurologists, radiologists, and psychiatrists. Add to this a reduced number of lower wage healthcare workers, medical assistants, home health aides and nursing assistants.

Are you like me, and wondering what is going on with our nurses and other healthcare workers? This is just a glimpse of what plagues them, 2-1/2 years after the pandemic began.

In future blogs we’ll take a deeper dive into the healthcare crisis, and seek positive solutions.