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.

 

 

Elderly Refugees: The Experiences of Cambodian populations under the Khmer Rouge

War, natural disaster and fear of persecution often result in the tragic displacement of people far away from their homes. These people, refugees, live in uncertainty and under significant psychological and physical stress. Among these refugees are the elderly who are a particularly vulnerable group. Aging is not limited to disease and disability, but also the sudden change and a loss of belonging. The experiences of Cambodian elderly refugee populations is a clear example.

The Khmer Rouge took over Cambodia in the 1970s, prompting several years of genocide and a mass exodus of Cambodians into Thailand, US and other countries. By 1979, there were 160,000 Cambodians in refugee camps in Thailand.

A 10 year study sought to capture the experiences of Cambodian Americans in Northern California. Most Cambodian Americans lived in run down neighborhoods with a high prevalence of criminal activity. Elderly immigrants were at high risk of occupying poor housing conditions. Despite this fact, some refugees chose to move back into inner city neighborhoods as they aged to be a part of the community they once were as recent immigrants. In the case of this refugee population, many elderly people did not want to return to Cambodia given the turmoil which influenced their flight. Of those who did, they were constantly reminded of the differences in living conditions between the two countries.

Many Cambodian refugees in the US had poor education. With low income and little to non-existent English skills, elderly refugees constantly needed support from other immigrant populations, their children, and resources from the government. One woman says, “At my age, I’ve nothing to do, but pray for my children. I know that now I am their pillar, but later when they all grow up and leave, I will be alone with only myself to rely on.”

The past experiences with the hardships of the Khmer Rouge are constantly woven into their current narratives. For instance, many elderly complain of diseases such as high blood pressure or sleeplessness, and attribute such ailments to the harsh lives under the the Khmer regime. Post-traumatic stress disorder and depression are also common among Cambodian refugees. According to one study, family-related anger is prevalent among refugee families because of the cultural gap between refugees and the general population, as well as between refugees and their children who are much better adjusted to American lifestyle.

There are many organizations working towards improving the lives of elderly immigrants. The International Rescue Committee (IRC), one of the world’s leading organizations for refugees, has an Elderly Refugee Program. This program provides English as a Second Language classes, and assists in part-time employment and obtaining citizenship.

Yet the question remains – What can be done about the sense of loss of loved ones, one’s home, country and citizenship?

Namratha Rao is currently pursuing her MSPH in International Health in Social and Behavioral Interventions at the Johns Hopkins University Bloomberg School of Public Health.

Old and Homeless in Australia: It Can Happen to Anyone

In Australia, on any given night, 1 in 200 people are homeless.” One fifth of all people who are older than 55 years of age are homeless; many more live in unsecured housing.

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What is homelessness and what may cause someone to become homeless? A person is considered homeless when he or she does not have a conventional home and lives on the streets or in a park. Someone may be at risk of homelessness when living in unsecured housing. There are certain reasons that can cause homelessness which may include lack of social bonding and support from family or friends. What if you are in a crisis and cannot receive help from the closest people in your life—your family and friends? What would you do? You may think it can never happen to you but that may not be the case. Homelessness can happen to anybody. Young, old, women, and men.

Today, Australia and most other developed nations face more issues with divorces, family breakdown, and higher rent for affordable housing. Due to the growing aging population, homelessness will become a rising issue because of the lack of money to build affordable housing or lack of space for seniors in existing homeless shelters.

ABC Australia reports that Australian older women outnumber the men in homeless shelters. In fact, 9% of single women over the age of 45 are in crisis accommodation and that number will continue to rise. The woman being interviewed by ABC makes it clear that it can happen to anybody. She notes that “there is a fine line between having a roof over your head and having nothing.” Imagine if you, from one day to another, lost everything and couldn’t turn to anyone.

The report “Homelessness and older Australians: Scoping the Issues” reports that there are systems in place in Australia that give the homeless population access to certain services. However, the homeless believe that their complex needs are not addressed. In addition, they have difficulties to access those services and obtain the needed information because the service system in itself is too complex. There needs to be an increased collaboration and integration of existing service departments.

Australia must think of sustainable ideas and strategies to increase and invest in the affordable housing stock. The government, non-governmental organizations and service providers also need to step up and create strategies to reduce the bureaucracy and make easier access to the services the homeless population needs easier.

Martina Lesperance
is a Health Educator and Screening Technician in El Paso, Texas.