Family Caregivers: The Unsung Heroes of Society

Photo Credit: Vicki Tapia

Photo Credit: Vicki Tapia

In 2004, my father was diagnosed with Parkinson’s-related dementia and a few months later, my mother with Alzheimer’s disease. That was the year I became a caregiver. While my parents did not reside with me, I was still intimately involved in their daily care for the next 4 and 5 years. Traveling down that rabbit hole of dementia with my parents was difficult and sad. I watched helplessly as this disease steadily and ruthlessly chipped away at their brains, one memory at a time. That said, it was also a time of considerable personal growth for me. I learned to parent my parents with patience and compassion, caring for them much as they had cared for me as a child so many years before. Interspersed with the challenges were times of fleeting lucidity as well as moments of poignant tenderness, which I still remember and cherish, even today. These are moments I would have missed forever, had I not been a family caregiver.

According to the Alzheimer’s Association’s 2015 Facts and Figures, 85 percent of unpaid caregiving help for older adults in the USA is provided by family members. Women make up two thirds of that number, and over half of women caring for people with dementia are taking care of parents.

How many people actually plan on being an unpaid caregiver? Whether it is a spouse, parent or well-loved aunt, it is unlikely that most of us will ever anticipate the reality of wearing the label “caregiver.” As the boomer population continues to age, the number of unsung heroes caring for a family member is on the upswing. According to the report, *Caregiving in the U.S. 2015, there is currently an estimated 34.2 million American adults caring for a loved one 50 years or older.

Caregiving can be overwhelming, both emotionally and physically, bringing with it a myriad of emotions, all of which I experienced at one time or another, including frustration, helplessness, anger, sadness, depression, and guilt. The experience can also be lonely. At times I remember feeling like I was on a deserted island, with nary a person who really understood what it was like.

While speaking at a caregivers meeting recently, two women approached me afterwards to share their stories. One woman told me that her spouse with Alzheimer’s is slowly becoming more than she can handle, but her children are insisting that she keep him at home. The other woman suspects that her elderly father who lives next door to her is showing signs of dementia, but he flatly refuses to go to the doctor. They were both searching for answers. Like growing old, caregiving is not for sissies.

I sensed in these two women what experts label caregiver burnout, a very real phenomenon and the number one reason why it is imperative for all caregivers to recognize the importance of self-care.

If you or someone you know is experiencing the below symptoms, I encourage you to please make time to see a doctor.

  • Anxiety
  • Irritability
  • Social withdrawal
  • Sleeplessness
  • Exhaustion
  • Poor concentration
  • More susceptible to illness

*Caregiving in the U.S. 2015 – A Focused Look at Caregivers of Adults Age 50+ was published by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.


Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. Two watched both their parents’ memories disappear and one is a nurse who was a caregiver for those affected. Another is a granddaughter that was forgotten by her beloved grandpa, and the other is experiencing the disease himself.

For the month of November, the 5 of us have joined together together in recognition of both National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to acknowledge those family caregivers who are unsung heroes. From each other, we learned that all of us felt compelled to write our books, eager to make a difference…hoping that we might make the pathway for others traveling this road a little less painful and lonely.

Check out this commentary for more information on these great books!

Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana.

Who Are You? Where Am I?

In an effort to increase awareness for the first annual National Memory Screening Week held Nov. 1-7, Vicki Tapia, author of Somebody Stole My Iron, has joined with four other authors of books about dementia/Alzheimer’s. This article describes the campaign and presents a brief synopsis of their books.

It was the weekend of our family reunion and almost everyone was gathered together at my parent’s condo to celebrate a milestone. Our patriarch, my dad, was turning 90. When the front doorbell rang, Mom opened the door, took one look at her oldest granddaughter and asked in a perplexed tone of voice, “Who are you?” After a moment of silence, we all laughed a little uncomfortably, but brushed it off, rationalizing the comment as a manifestation of Mom’s stress in caring for Dad, who had been diagnosed with Parkinson’s disease. It was not mentioned again.

Our family continued to somehow normalize or overlook the ever-increasing signs that something was not quite right with Mom’s behavior. Another two years passed before she finally agreed to be evaluated by her health care provider, around the same time Dad was diagnosed with Parkinson’s-related dementia. Although by this time, our family wasn’t completely surprised by Mom’s Alzheimer’s diagnosis, we were alarmed to hear she was already considered to be in the “moderate” stage of the disease. I later learned this scenario is typical.

Studies tell us that the delay in diagnosis can be attributed to the family’s own denial in not wanting to face the fact that something is wrong. In retrospect, this could be applied to our family, although in many ways, we were simply clueless in the beginning. Sometimes, a fear of diagnosis can result in reluctance on the part of the affected person to agree to an evaluation, particularly if it involves an adult child prodding an intractable parent. Healthcare costs may also be a factor in avoiding an assessment by a qualified health care provider (HCP). The oft-perceived stigma associated with a potential diagnosis of dementia/Alzheimer’s can be a barrier to evaluation for the entire family.

National Memory Screening Week

In an effort to promote the importance of early detection of memory problems, the Alzheimer’s Foundation of America (AFA) has launched the first annual National Memory Screening week scheduled for Nov. 1-7.

The screenings will be free and confidential, and if deemed necessary, refer people onto appropriate follow-up services. One of the goals of the screening is to work toward eliminating the stigma and fears associated with dementia. The AFA also hopes to alleviate fears for people who participate in the memory screening, but do not show a concerning memory problem.

For more information about the screening (date, time) and a list of participating sites, visit National Memory Screening.

Who should consider having a memory screening?

  • Anyone concerned about memory loss or experiencing any of the warning signs of dementia.
  • Anyone who feels they are at risk due to a family history of Alzheimer’s disease or another type of dementia.
  • Anyone who wants a baseline evaluation of their memory for future comparisons, even though they do not have a current concern.

If you or a loved one answer “yes” to any of the following questions provided by the AFA, it may be prudent to participate in the free memory screening.

  • Are you becoming more forgetful?
  • Do you have any trouble concentrating?
  • Do you have difficulty when performing familiar tasks?
  • Do you have trouble recalling names or words during conversation?
  • Do you sometimes forget where you are going or where you are?
  • Have friends or family told you that you are saying the same thing over and over or repeating questions?
  • Do you often misplace things?
  • Have you become lost when driving to a familiar place or walking in your neighborhood?
  • Have your family or friends told you they have noticed changes in your behavior, moods, personality, or desire to engage socially?

For more information, visit Information for Participating Sites on the National Memory Screening website.



The scene described in the opening paragraph of this blog post is based on an excerpt from my memoir, Somebody Stole My Iron, which details the daily challenges, turbulent emotions, and many painful decisions involved in caring for my parents. Laced with humor and pathos, reviewers describe my book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” I wrote this story to offer hope to others whose lives have been intimately affected by this dreadful disease, and to reassure them that they are not alone.

Four other engaging books about dementia/Alzheimer’s disease that I am pleased to recommend include:

 

On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Greg’s story is not about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. On Pluto is a book about living with Alzheimer’s, not dying with it.” 

Alzheimer’s Daughter by Jean Lee

Jean’s memoir details her journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but a World War II love story held together by faith and family is contained within the pages.

Blue Hydrangeas by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It is a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer’s and Jack becomes her caregiver.

What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a young girl, perhaps not surprising, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.

Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana, USA.