As regular readers of my blog know, my Mom suffered from Lewy Body dementia – a cruel combination of Alzheimer’s and Parkinson’s. I was her primary caregiver until her death in June and have written several blogs on the subject in the past.
The Alzheimer’s Foundation of America (AFA) is launching its first annual National Memory Screening week, scheduled for November 1-7. The screenings will be free and confidential, and if deemed necessary, refer people to appropriate follow-up services.
To raise awareness of this event, I am happy to feature a guest blog from Vicki Tapia who cared for her father who had Parkinson’s-related dementia and her mother who was diagnosed with Alzheimer’s. Her courageous story as she faced challenges, turbulent emotions, and painful decisions is inspiring and heart-touching:
WHO ARE YOU? WHERE AM I?
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 probably applied to our family. 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 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:
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 the 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, to reassure them that they’re not alone.
Four other engaging books about dementia/Alzheimer’s disease 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.
Image courtesy of Stuart Miles at FreeDigitalPhotos.net