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?
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.
For more info:
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.
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