Memories are precious – something we are all so keenly aware of.
With memories, we are able to think fondly of days gone by, and people who have shared a part of our lives. With memories, we can contemplate on how far we’ve gone, how much of us has changed, and what direction our lives have taken. Whether they be happy or sad ones, joyful or bittersweet, memories help keep us sane, hopeful and, most of all, human and humane. For, to live, it is by far much better to have regrets, than have nothing in life, and no memory to be regretful for.
But what happens when one’s biology allows for memories to be snatched away?
The loss of memory is one such outcome of Alzheimer’s disease (AD), a very specific form of dementia where the affected individual progressively worsens in terms of memory impairment, their inability to carry on normal day-to-day conversations, mood and behavioral changes, paranoia, and “difficulty speaking, swallowing and walking.” Most often associated with aging, people at age 65 or older are, indeed, at a higher risk of developing Alzheimer’s, but recent findings have shown that about 5% of cases affect people in their 40s and 50s, afflicted with what is termed “early onset Alzheimer’s.”
People diagnosed with Alzheimer’s have a survival range of four to 20 years, and as doctors are still only discovering more facets of this debilitating disease, no cure has yet been found.
What is different and at the same time regretful about Alzheimer’s is that the general lack of awareness and understanding has led to Alzheimer’s sufferers becoming isolated from their own friends and families, and stigmatized by the rest of society. Most family members end up not only despairing the situation of their loved one with Alzheimer’s, but also uncertain and frustrated about their seeming inability to deal with the situation in the best possible way.
In the UAE where knowledge of Alzheimer’s is still generally at a germinal stage, Desirée Vlekken, through the non-profit organization she founded called 4get-me-not.org, embarked on a quest to educate people about the disease, and ensure that those affected are given a chance to live the rest of their lives in the most comfortable and decent circumstances possible, and with the full understanding and support of their loved ones and caregivers.
When asked about how 4get-me-not was conceived, Desirée says, “My in-laws and my parents are of the same age. The former are sociable, outgoing and had been leading enjoyable lives in their twilight years. The opposite happened to my parents especially to my father who became a recluse after his retirement. This aggravated his bouts of depression, and he also developed Type II diabetes. Both depression and diabetes were trigger factors of his early onset Alzheimer’s disease. About five years earlier, he was already showing signs of AD, but we did not pay attention thinking it was a natural part of aging. But in December 2012, a year after I was confronted by my Dad’s situation, I looked for an AD support group but didn’t find any. So instead of me continuing to seek help that wasn’t there, I decided to try helping others by organizing 4get-me-not.org as an information platform for people who want to know and understand AD. Information is simplified and shared in a way meant for people with non-medical backgrounds as well as for family members and caregivers of AD patients.”
Setting up 4get-me-not was obviously not an easy task. Desirée recalls, “I started by getting the support of my husband. There was no other AD organization in existence before, and I had to navigate the way on my own and set it up completely from scratch. 4get-me-not was a new organization with a bold mission, and I knew that, as a woman, I had to be bolder to get CSR support. For a time, I was in doubt of my capacity because in my mind I’m just a simple housewife and mother to a simple family. Who would listen to me? Then I started the first film screening on AD in 2013. It was 4get-me-not’s first public exposure. I designed the event to be simple, honest and informative, so we gained a lot of followers. In time, we gained the valuable support of volunteers (mostly pre-med students from the Dubai Medical College for Girls and Emirates Medical Student Society), and private entities who have made it part of their CSR activities. 4get-me-not is now on its 3rd year, and all our CSR events on AD are always jam-packed.”
When asked to share her advice to all girls and all women struggling to succeed and find happiness in life, Desirée says it is all encapsulated in her favorite quote from Carl Jung: “I am not what happened to me, I am what I choose to become.”
Desirée, a Political Science Graduate of the Royal Pontifical University of Santo Tomas and a holder of a Masters in Business Administration at the Graduate School of Ateneo de Manila University in the Philippines, is a Filipino expat who has been living in Dubai for 15 years, and is married to a supportive Belgian husband. They have a 5-year-old son whom she allows to tag along during her meetings. She proudly says, “Our son can ‘speak’ Alzheimer’s flawlessly.”
As the founder and CEO of 4get-me-not, Desirée finds it challenging to balance work and family life, but she has a pretty good functional arrangement with her husband, “It’s hard balancing everything, but I do follow a daily schedule so that I can keep track. My husband and I have house chores. If I can’t cook dinner, he’ll pitch in so I can finish a report. Then the following day I’ll do his chores, and so forth. I ensure that both my husband and son are present during 4get-me-not events so they see and understand better why we are here. Whenever I have spare time, I bake with my son or play mini-golf or play the piano. I also enjoy reading inspirational books on historical figures particularly about Eleanor Roosevelt.”
Although 4get-me-not has already grown in leaps and bounds in a relatively short span of time, Desirée says she hopes to establish one 4get-me-not chapter in each of the seven emirates.
When asked to share her advice to all girls and all women struggling to succeed and find happiness in life, Desirée says it is all encapsulated in her favorite quote from Carl Jung: “I am not what happened to me, I am what I choose to become.”
About the writer
Claire Dangalan is a Filipina freelance feature writer (a.k.a. Lovely Claire Cachuela) based in Dubai. She is a consummate lover of the arts, especially literature. She taught Cultural Anthropology, Sociology, Humanities and Literature back in the Philippines. Her interests, aside from writing, include the environment, health and fitness, culinary arts, social issues, studies on world view, and “unprofessional photography.”
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