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 didn’t 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’d 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 Alzheimer’s Association’s 2015 Facts and Figures, 85 % of unpaid caregiving help provided to older adults in the U.S. is provided by family members; 2/3 of them women. And, over half of us caring for people with dementia are taking care of parents.

How many of us actually plan on being an unpaid caregiver? Whether it’s a spouse, parents or a well-loved aunt, it’s unlikely most of us 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 are currently an estimated 34.2 million American adults taking care of a loved one 50 years or older.

Caregiving can beoverwhelming, 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
• Guilt
• Anxiety
• Irritability
• Social withdrawal
• Sleeplessness
• Exhaustion
• Poor concentration
• More susceptible to illness

Caregiving can 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 caregiver’s meeting recently, two women approached me afterwards to share their stories. One woman told me 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 2 women what experts label caregiver burnout,a very real phenomenon and a number one reason why it’s imperative for all caregivers to recognize the importance of self-care.

If you or someone you know is experiencing these symptoms, I encourage you, please make time for a doctor’s visit.

*Caregiving in the U.S. 2015 – AFocused 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 of us watched both our parents’ memories disappear. One of us is a nurse who was caregiver for those affected. Another, a granddaughter who was forgotten by her beloved grandpa and the other of us is experiencing the disease himself.

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

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

Greg O’Brien’s story isn’t 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." 

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's 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 Rememberby Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a young girl, not surprising perhaps, 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. 

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 WWII love story held together by faith and family is contained within the pages.

Somebody Stole My Ironby Vicki Tapia

Vicki’s memoir details the daily challenges, turbulent emotions, and many painful decisions involved when caring for two parents with dementia. Laced with humor and pathos, reviewers describe the book as brave, honest, raw, unvarnished, as well as a must-read for every Alzheimer's/dementia patient's family.

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 tosomehow normalize or overlook the ever-increasing signs that something was not quite right with Mom’s behavior. Another twoyears 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 canbe 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 mayalso 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 bea barrier to evaluation forthe 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 November 1-7.

The screenings will be free and confidential, and if deemed necessary, refer people on to 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 the people who do 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:www.nationalmemoryscreening.org.

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’re at risk because of 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 don’t 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’re going or where you are?
• Have friends or family told you that you’re 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’ve noticed changes in your behavior, moods, personality, or desire to engage socially?

For more info:

http://nationalmemoryscreening.org/screening-sites-info.php

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The scene described in the opening paragraph of this blog is based on an excerpt from my memoir,  Somebody Stole My Iron, which details the daily challenges, turbulent emotions, and themany 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, to reassure them that they’re not alone.    

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

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

Greg O’Brien’s story isn’t 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 WWII 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's 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, not surprising perhaps, 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. 

Meet Vicki: I started life in a small town in eastern Montana, known for its cowboy bars and yearly “world-famous” horse sale. Breaking the mold, I did not grow up to marry a cowboy or live on a ranch, but after securing a degree in elementary education from Montana State University, promptly spent more than two months vagabonding about Europe before settling into married life and a job in Michigan.

Three babies, two moves and a new husband (much) later, I am now happily settled back into the unhurried life of a Montanan in the south-central part of our beautiful state. The babies have long since grown and gone, although happily, my son and his wife moved back to Montana, which means I now have two grandsons nearby!

For over 30 years I was a lactation consultant, counseling women on how to succeed with breastfeeding. In January of 2014, I made the decision to leave this career behind in order to pursue my writing and other as-yet undiscovered adventures.

Journaling has been a part of my life since I was 16, a form a therapy that helped me cope over the years with the ups and downs of life. I have also written and had numerous articles published in lactation journals. My typical subject matter of lactation, however, took an abrupt turn from life’s beginning to life’s end when I began keeping a diary documenting our family’s journey, after my mom was diagnosed with Alzheimer’s and my dad with Parkinson’s-related dementia. Over time, this diary became my first book-length work, a memoir detailing our rocky road through this devastating disease. I was inspired to publish Somebody Stole My Iron after sharing it with friends and friends of friends traveling the same difficult road and hearing them tell me how much reading it helped them on their journey.

Somebody Stole My Iron- About the Book:

Navigating the waters of dementia can be frightening, unleashing a myriad of emotions for everyone involved, precipitating anxiety and grief, anger and frustration, extreme sadness and feelings of hopelessness. After my mother was diagnosed with Alzheimer’s disease, followed closely by my father with Parkinson’s disease-related dementia, I struggled to find practical, helpful information to light my way. Somebody Stole My Iron began as a diary to help me cope, but emerged as a road map for others. It offers a glimpse into my family’s life as we rode the waves of dementia, sometimes sailing, other times capsizing. My memoir offers useful information from experts within the field of Alzheimer’s research, personal lessons learned along the way, and ideas/tips for managing the day-to-day ups and downs of dementia. It is a story of holding on and ultimately learning to let go, transcending the pain and turmoil to discover love and compassion. Above all, Somebody Stole My Iron chronicles the tenacity of my mother as she fought her way through the tangled and bewildering labyrinth. The goal of my narrative is to offer hope to those whose lives have been intimately affected by dementia, letting them know that they are not alone.