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.

Healthcare Crisis – You Can Make a Difference

by | Aug 31, 2022

It Starts With Us

In the last two blogs I provided stories and information about the health care crisis. If you did not get a chance to read them you can go back and check out “Where Have All The Nurses Gone” and “Who Will Care for 69.6 Million Baby Boomers?” found here: Blogs

Proposed solutions to consider:

Solution #1 – It starts With Us

Meet Marvin Eppard, caregiver and author, pictured with me.  I have so enjoyed getting to know Marv and tapping into his wisdom.

I met Marv at a presentation I was doing as a volunteer Community Educator for the Alzheimer’s Association. We traded books, my “Dancing With Lewy: A Father Daughter Dance Before and After Lewy Body dementia Came to Live With Us” for his “A Thief in the Pantry”.

In A Thief in the Pantry, Marvin shares how he took care of his wife Jan for ten years through the “devastating thievery of Alzheimer’s disease.”  Marv’s book is a heartfelt account of his caregiving journey, and how his faith sustained him.

In his 80s at the time, Marv diligently cared for his wife Jan at home as long as he could. He tapped into a support system including his adult daughters and their families, and his faith community who provided meals, respite, and support.  Marv was fortunate to find excellent and consistent home health care for Jan. Eventually he had to place Jan in a care home as he could no longer supply her day-to-day care needs.

Marv recognizes not everyone has the ability to care for a loved one at home, or has sufficient support.  Jan passed away in 2019 before the pandemic, and he recognizes the caregiving situation has become more dire in the last couple of years.

In the conclusion to his book, Marvin appeals to the medical community and administrators of care facilities to prepare for a coming surge in the number of people with Alzheimer’s disease.  In talking with him, he also emphasizes the need for families to prepare to care for their loved ones at home, as there simply are not enough care facilities available.

Marvin suggests we can all advocate for ways to improve care. He recommends these suggestions from the Alzheimer’s Association setting forth practical ways to advocate for improved care.

Alz.org Advocacy

What more can we do?

The National Alliance for Caregiving presents best practices and strategies to identify and address issues surrounding family caregiving.  At their website you can find a Collaborative Membership Directory, resources for Caregiving Coaltions, and ways to develop unified strategies to support family caregivers.  National Alliance

Advocate for reform and resources. Talk to your friends, your families, your medical community. Anyone can be an advocate by writing emails, contacting legislators, or joining a group or organization to advocate in an organized manner.  Go to town halls, communicate on Twitter, or contact your legislators here:

Let them know what matters to you and what you think about healthcare reform. They want to hear from their constituents.

Solution #2 – Educate the “Sandwich Generation”

I used to be part of the “sandwich generation”, but my children are adults and my parents have passed away.  Now there is a new group of younger people fitting in this category. The Webster Dictionary defines this group as:

A generation of people, typically in their thirties or forties, responsible for bringing up their own children and for the care of their aging parents.
(I add people in their 50s and even 60s to this group, as many people have children later in life, and elderly people are living longer.)

I gave this recorded speech specifically targeting the Sandwich Generation. It’s a ten minute listen and worth sharing with others, especially those you know in the Sandwich Generation.  Prepare to be a Caregiver

Solution #3 – Mental Health Intervention

Our society is becoming more aware of the need to provide mental health intervention. In a similar way, medical facilities need to actively provide mental health management strategies for their staff. They must recognize signs of Post-Traumatic Stress Syndrome (PTSD). For example, one incident of an angry or violent patient can lead to PTSD, and it should automatically require counseling and intervention by management.

Wolter Kluwer points out that all staff, including nurses, aids, and doctors, can benefit from mindfulness and resilience training.  Training

We need to take steps to address the mental health needs of these important people who take care of us.  Perhaps it could help stop the hemorrhaging of nurses and other medical staff leaving the profession.

Solution #4 – Address the shortage of Healthcare Educators

The Duquesne University School of Nursing in Pennsylvania addresses the shortage of educators. Nursing schools often have to restrict enrollment due to these shortages. This article states:

“The need is not only for nursing facilities to teach in associate’s or bachelor’s degree programs. Nursing assistants and health aides also need training. Furthermore, a need for nurse practitioners means that schools need faculty members who can teach in master’s degree programs and oversee clinical practice for aspiring nurse practitioners.”

Experienced nurses could be encouraged to become educators to help close the gap, especially if the pay for educators is similar to nurses pay.

This article also offers general ways to address the healthcare workforce gap:

  • Promote Public Health and Preventative Measures
  • Attract More Nurses to Primary Care Roles
  • Provide Online Healthcare Degrees and Certificates
  • Increasing Policy Initiatives Aimed at Supporting Human Resource Development
  • Collecting Reliable Data for Health Databases
  • Giving Healthcare Workers a Voice in Shaping Legislation and Policies

Read more detail about these ideas here: Duquesne – Healthcare Shortage

Lastly, The American Hospital Association offers a few more practical tips for healthcare facilities:

  • Customize retention strategies including flexible scheduling and breaks to recharge, strong management support, open lines of communication, input into decision-making, accessibility to mental health and well-being resources to cope with job-related stress, or help with child or eldercare.
  • Customize the workforce for Millennial and Gen Z workers. These younger professionals can be more selective in where they work, and they also appreciate the chance to be innovative. In particular, the Gen Z generation wants to find ways to share the mission, and they value diversity and inclusion.
  • Develop strategies to keep the workforce reskilled as changes come. Professional development will strengthen the talent pipeline.

American Hospital Association

If you work in a medical facility, I urge you to get involved in training, advocating for mental health services, and education for yourself and your co-workers.

Is There Hope?

There has to be hope because 69.6 million of us Baby Boomers are getting older every day.  Our need for care will affect every member of society.   It will require federal and local government agencies, healthcare facilities, legislators, and people like you and me to get involved and take a stand. It takes families to communicate and plan ahead.

Take a small step today, pick anyone of these issues, or tell your own story, and share it with your legislator.  Talk about the problem and proposed solutions to anyone who will listen.  Support and encourage healthcare workers in your life.

Take action today!

Who Will Care for 69.6 Million Baby Boomers?

by | Aug 24, 2022

Abandoned Again

When my husband and I moved into our new home five years ago, I needed to find a new medical practitioner at our local clinic.  I found “Theresa,” a Nurse Practitioner (not her real name.)

Immediately I could see she was warm, caring, and genuinely concerned with my health.  Then came the pandemic, and I only saw her behind mask and face shield.  But her voice still radiated genuine concern.

I saw Theresa earlier this year (2022). She wore just a mask, I could see her eyes were tired and she had aged. Still kind and helpful, at the end of the visit I told her how much I appreciated her care, considering how hard the last couple of years must have been. Tears glazed her eyes.  (I thought, “Is no one telling medical professionals how much they are appreciated?”)

Two months later I received a letter stating, “Theresa will be leaving the clinic to pursue other alternatives…”

I sighed. Abandoned by another medical care professional. Another loss for her patients, another hunt for a practitioner. I cannot assume she left because of exhaustion, but I cannot help but wonder why? And what is she doing now?

As a Baby Boomer, I know I will need more care as I age.

Who fits in this group of Baby Boomers (or “Boomers”?)  Apparently, those post World-War II parents loved children and had a lot of us.

There are:

  • 69.6 million people ages 58 to 76
  • US Boomers remain the second-largest population group in 2022
  • My husband and I are Boomers, along with family members on both sides, and many of our friends. If you are not a Boomer, you likely have family members fitting into this category.

In the first blog in this series you met Jenna, a critical care nurse who is at the breaking point. And Jenna is not alone. The Pew Charitable Trust reports, “ Exhaustion and burnout have taken an enormous toll on the health care workforce during the COVID-19 crisis. Nearly 20% of health care workers quit their jobs during the pandemic, and a third of those remaining acknowledged that they’ve thought about quitting, according to a survey by Morning Consult, a marketing research firm.”

As a Boomer I wonder, “Who will take care of us?”

The Pew Charitable Trust goes on to state: “The shortage didn’t start with the pandemic and won’t end with it.  In 2019, the United States had nearly 20,000 fewer doctors than required to meet the country’s health care needs, according to an estimate by the Association of American Medical Colleges…At the current rate, the group said, that gap could grow as high as 124,000 by 2034, including a shortage of as many as 48,000 primary care doctors.

…The U.S. Bureau of Labor Statistics estimates that each year through 2030, there will be nearly 195,000 vacancies for registered nurses. The St. Augustine report says that the profession isn’t producing registered nurses fast enough to meet the demand.”  Pew Charitable Trust

 The problem is self-perpetuating:

  • There is a shortage of doctors, nurses, X-ray technicians and more
  • The ones who are working are asked to work more shifts with fewer people
  • People get worn out or ill (COVID is still active) and don’t go to work, causing more shortages
  • Young ones are quitting, and older ones are quitting at a faster rate
  • The younger ones with families to care for wonder what to do?  They made need extra childcare for added shifts, or encounter unexpected school closures.  Many find themselves as caregivers for their aging family members.

This is not new news!

  • Government statistics readily quote the shortages of healthcare workers
  • States have addressed the issue with varied success rates
  • Hospitals and clinics certainly know it is a problem
  • Insurance companies are concerned:

Liberty Mutual reports “…the industry faces a historic labor shortage at a time when the work of healthcare is exceptionally challenging. Across the nation, overburdened medical professionals are feeling numb, burned out, and underappreciated — and that can lead to increased risks for patients, clinicians, and medical systems…

It is well documented that appropriate healthcare staffing lowers mortality rates, shortens how long patients stay in care facilities, and reduces preventable harm events. Short staffing can cause delays in treatment, misdiagnosis, and unintentional medical errors, as healthcare workers try to manage the same workload with less support.” (bold mine)  Liberty Mutual 

Who should care about this healthcare crisis?

  • Most certainly us Boomers, after all, who will take care of us?
  • Populations most at risk for healthcare disparities (defined by the National Institutes of Health) are especially vulnerable:
    • American Indians/Alaska Natives
    • Asian Americans
    • Blacks/African Americans
    • Hispanics/Latinos
    • Native Hawaiians and other Pacific Islanders
    • Sexual and gender minorities
    • Socioeconomically disadvantaged populations
    • Underserved rural populations
  • Younger people, including those with aging parents and grandparents. After all, they will become the problem solvers of their parents and grandparents healthcare needs. (I hope our sons are reading this…)
  • Every tax payer

I am writing these blogs to help raise awareness of the need, so all facets of society can find ways to address the labor shortage problem. There is hope, but it will require all facets of society working together.

In a future blog I will explore what can be done.

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.

Can Caregiver Self-Care Be Selfish?

by | May 7, 2022

Is it Selfish for a Caregiver to Take a Break?

It depends.  If a caregiver is leaving an incapacitated loved one unattended or in an unsafe situation, the answer could be yes.   But this is (hopefully) rare.

Real-life situations?

I was speaking to a group about caregiving, and one lady lamented, “My mom is so sick with cancer, I feel guilty when I do anything enjoyable.”  Sad, but unfortunately many of us can relate to how she feels.

In “Remarkable Caregiving”, there is a story of a couple, Sandra and Ken. They took in Sandra’s dad, who had Parkinson’s, to live with them.  We read, “At times, when her husband could see Sandra reaching a breaking point, he would say, ‘I’m going to take care of Dad Friday night, and you go to a hotel’. “

Selfish or selfcare? You be the judge.

Guilt, exhaustion, and burnout often happen while caregiving. What can a caregiver do to address their own needs without being selfish?  We find ideas from HelpGuide*.

  • Maintain your personal relationships. Don’t let your friendships get lost in the shuffle of caregiving. These relationships will help sustain you and keep you positive. If it’s difficult to leave the house, invite friends over to visit with you over coffee, tea, or dinner.
  • Share your feelings. The simple act of expressing what you’re going through can be very cathartic. Sharing your feelings with family or friends won’t make you a burden to others. In fact, most people will be flattered that you trust them enough to confide in them, and it will only strengthen your bond.
  • Prioritize activities that bring you enjoyment. Make regular time for hobbies that bring you happiness, whether it’s reading, working in the garden, tinkering in your workshop, knitting, playing with the dogs, or watching the game.
  • Find ways to pamper yourself. Small luxuries can go a long way towards relieving stress and boosting your spirits. Light candles and take a long bath. Ask your spouse for a back rub. Get a manicure. Buy fresh flowers for the house. Whatever makes you feel special.
  • Make yourself laugh. Laughter is an excellent antidote to stress—and a little goes a long way. Read a funny book, watch a comedy, or call a friend who makes you laugh. And whenever you can, try to find the humor in everyday situations.
  • Get out of the house. Seek out friends, family, and respite care providers to step in with caregiving so you can have some time away from the home.

*For more ideas and information visit https://www.helpguide.org/articles/stress/caregiver-stress-and-burnout.htm. HelpGuide is a small independent nonprofit that runs one of the world’s top 10 mental health websites. Over 50 million people from all around the world turn to HelpGuide each year for trustworthy content they can use to improve their mental health and make healthy changes.

Find more caregiving resources and information on Nancy’s books, including “Remarkable Caregiving: The Care of Family and Friends” at  https://nancyrpoland.com/caregiver-resources/

This Report Broke My Heart

by | Jul 21, 2021

Alarming CDC Study

I recently read an article that broke my heart.  It began:

“Parents who are also caregivers struggle with suicidal ideation, new Centers for Disease Control (CDC)  study shows.” It was written by Kara Baskin, Boston Globe Correspondent, Updated July 2, 2021, 8:00 a.m.

(Definition of “suicidal ideation” – when you think about killing yourself; the thoughts might or might not include a plan to die by suicide. WebMD)

Ms. Baskin’s by-line said, “We need to be more open about the stress of caring for aging parents, because our mental health depends on it.”

The CDC study found that parents-caregivers (people taking care of both kids and aging adults) had significantly worse mental health than adults not in these roles. Among parents-caregivers surveyed, approximately 50 percent reported serious suicidal ideation in the past month.

In addition, the CDC reported people with caregiving responsibilities for children and adults had eight times the odds of serious suicidal ideation compared with non-parents/non-caregivers.

Yes, friends, it can be that hard.  People are stressed out by caregiving for adult parents raising kids, working, and balancing our modern, busy lives. I know, I have been there (although fortunately I did not consider suicide as an option.)

Ms. Baskin’s article presented various ideas on how caregivers, especially for ageing parents, can cope. Ideas include learning to identify yourself as a caregiver, hiring help, not berating yourself if you feel clueless. You can read more details  here:  CDC Study

Nancy, Can You Help? 

I recently received a call from a couple I know well, “Richie” and “Alecia” (not their real names).  In their 40s, they are trying to figure out what to do about Alecia’s dad, who is aging, falling more, but wants to stay in his home. Did I have any ideas?

Fortunately, he is a veteran, and they can tap into veteran resources. I recommend Alecia go to a workup at the VA with him, where they will assess his physical, mental, and emotional well-being.  I also suggested they look into resources for homecare to help him fulfill his goal of being able to age well at home.  An easy idea they can implement is to obtain adaptive equipment for his home, such as grab bars in the bathtub (which has become a particular hazard for him), and a raised toilet seat.

My hope is they took a deep breath after the call, knowing they are not alone.

This is why I research and issue information for caregivers – even for those who may not yet identify as caregivers. I want to help others navigate their caregiving roles, and have a better experience with their loved ones.  Please help me educate  others by:

  • Recommending a free subscription to our monthly newsletter, “Caring for the Caregiver.”
  • Reading and sharing “Dancing With Lewy” and “Remarkable Caregiver”; both contain practical advice for navigating the caregiving role.
  • Following these blogs.
  • Researching and being ready to help others find caregiving resources; a good place to start is at https://nancyrpoland.com/caregiver-resources/.

And if you as a caregiver struggle with “suicidal ideation”, please, please, please reach out for help today.  The national suicide hotline is 800-273-8255; help is available today.

 

“Dancing With Lewy” is available wherever books are sold on-line.  Both books can be ordered from https://nancyrpoland.com.

“Remarkable Caregiving” will be released to the public November 3, 2021.