Recently, a lot has been happening in my life. Big things are happening: some for the better, some for the worse. Although it is difficult, I am focusing on the positive things in my life and being grateful for all the love and support I have been blessed with.
A few months ago, my mother was diagnosed with early on-set Alzheimer’s disease. I have been very private about this, and with the exception of my immediate family, I have only shared and discussed this news with a handful of people: my best friend, my boyfriend, his family, and a teacher I have stayed close with from high school. My mother’s diagnosis is a topic that is still too painful for me to bring up in person, and so I am choosing to share this with family members, friends, and readers on the blog today.
My mama is the kindest and sweetest person I know. She has always been thoughtful, caring, and genuine. She always thinks the best of people, and has very few bad thoughts about the people she meets and the world around her. I am so grateful to have had her as a mother, because she always made time to take care of my sisters and I. Beginning in the first grade, she volunteered as a chaperone on all my field trips throughout primary school. By the time I entered middle school, everyone in my grade knew how much of a hands-on mother my mom was, and how nice she was to everyone. My mom, who is so beautiful inside and out, garnered a reputation for her beauty and kindness among my peers.
My mom never stopped believing in my ability to flourish. She always encouraged me to try my best and was there to support me through everything. Math struggles, girl drama, my first crush… She was always there. When I left home for boarding school in tenth grade, I called her every single night and we would talk for an hour. When it was time to hang up, I would think of ways to extend the conversation, only because I missed her so much and couldn’t bear the thought of returning to my boring homework. Whenever I was home, we had a tradition of sharing an orange before going to bed. Shewould always peel the orange, while listening to me share stories from boarding or updates about my love life. My mom was my best friend, and what we had was a connection I haven’t shared with anyone else. We talked about everything and we could be doing anything, and it would be fun simply because I was with my mom.
Three years ago, my mom’s memory began to falter. None of us thought too much of it, until her short-term memory and cognitive ability began to rapidly deteriorate two years ago. Although the symptoms began to slowly appear three years ago, it was only recently that my mom was diagnosed with Alzheimer’s. I never imagined one of my parents would have Alzheimer’s, especially at such a young age. My mom stopped driving, and even though she had been actively attending yoga and pilates class, she began to stop going to classes. She stopped socializing with her friends, and as time progressed, she became increasingly distant and unable to complete everyday activities.
Alzheimer’s is an unforgiving disease: it damages and eventually destroys brain cells, affecting vital brain functions. Its progressive nature means that the disease only worsens overtime. As the author of this article notes, “Alzheimer’s disease is not forgetting where you left your keys, but actually forgetting what the keys are. There is a distinct difference between those two statements. Everyone forgets things now and then, but we do not forget that deodorant is not face cream, body lotion does not go in your hair and that you drink soda, not pour it over your pasta because you are not sure what to do with the can and it seems to make sense at the time. As the disease progresses, there is nothing you can do but watch your loved one slip further and further away into a world that no longer makes sense to you and I.”
“Ultimately,” the Alzheimer’s Association warns, “Alzheimer’s is fatal, and currently, there is no cure.” Alzheimer’s early stages begin with mild memory loss, “but with late-stage Alzheimer’s, individuals lose the ability to carry on a conversation and respond to their environment. Alzheimer’s is the sixth leading cause of death in the U.S. Those with Alzheimer’s live an average of eight years after their symptoms become noticeable to others, but survival can range from four to twenty years, depending on age and other health conditions.”
The most painful part of my mom’s diagnosis is knowing that there is no cure for Alzheimer’s. There is still so much research that needs to be done to find out how we can delay, if not prevent, the disease, and how we can better treat it in patients. Alzheimer’s patients are extremely dependent on caregivers, and caring for Alzheimer’s patients is a time-consuming process that is extremely emotionally difficult. Caring for someone with Alzheimer’s can be so distressing that up to 47% of family caregivers experience depression. Caregivers “become overwhelmed by the strain… and experience stress, illness, sleep deprivation, premature aging, and depression.” Even more astounding is a study revealing “that elderly spousal caregivers who experienced caregiver strain had a mortality risk that was 63 percent higher than that of control subjects.”
It has also been very difficult for me to see people laugh at my mom. Memory loss and Alzheimer’s are no small or humorous matters, and I am disappointed by the immaturity and ignorance some have shown in response to my mother’s condition. Worldwide, many who suffer from Alzheimer’s are unable to receive proper treatment due to the stigma that surrounds the disease. I am sharing this today not only to share the news of my mother’s diagnosis, but also to raise awareness and share information that may help to dispel misconceptions about the disease. According to a study undertaken on stigma and Alzheimer’s detailed within the 2012 World Alzheimer Report, “older adults and those who were less educated had more stigmatic beliefs than younger, better educated adults. Those who thought dementia was treatable had fewer stigmatic beliefs.” The authors of this study furthermore pointed out that dementia (to clarify, Alzheimer’s is a form of dementia) “is considered to be a family disgrace (stigma by association).” The study, however, found that there was a reduction in stigma when individuals were exposed to information about the disease and its symptoms. This study was undertaken in Hong Kong, where my parents live.
Nothing prepares you for Alzheimer’s. It is a physically and emotionally exhausting experience for both the patient and caregivers. In the past two years, I have lost not only a parent, but also a role model and my best friend. My mom’s condition has been hard on my entire family, and there are many moments when I struggle to accept the diagnosis. I get angry about why, of all people, fate chose to bestow Alzheimer’s on my mom, the kindest, loveliest, and strongest person I know. I regret every time I might have hurt my mom’s feelings growing up. I cry when I realize that she might not be here to see me get married, have children, or my two sisters complete high school and graduate from university. My mom would have been a fabulous grandparent, and my children would have been the luckiest kids on the planet to have had her as a grandma. I know how excited she was to be a grandmother and for me to eventually have my own children. While my mother’s diagnosis is hard for me, I can’t help but think about how hard it must be for her. I can’t imagine how frustrating and confusing it must be to not know your surroundings or to forget how you got somewhere.
My mom has good days and bad days. She is currently in the moderate stages of Alzheimer’s, and she often experiences anxiety and anger. She is upset easily, and small details in her life are often forgotten. She knows me, but struggles to understand where we met or who I am in her life. When we travel, she doesn’t remember what country we are in. She always wants to “go home”. When I have a sad or angry moment, I try to remind myself how lucky I am to have even had her as a mother in the first place. For now, my mom’s kindness and spirit are still present. Although she might not understand why I am sad, she still has the ability to recognize when I am upset, and to console me in what ways she can manage. She will still offer me a hug, and I find joy in being able to bring a smile to her face by cooking for her or something as simple as making her a cup of tea. I love that I can still hear her laughter, and I love seeing her dance to Shake It Off by Taylor Swift via Facetime or Snapchat. I love that she still thinks the world of her children, and that she believes we are all smart, beautiful, and capable human beings.
My mom will always be the woman I aspire to be and become as I grow older, and I will always show her just how much I love and appreciate her. Please cherish and appreciate your parents and loved ones. Tell them you love them, hug them, and spend as much time as you can with them. It’s never too late to start. Don’t take anything and anyone for granted, because you never know what might happen.
Please spread awareness about what Alzheimer’s is, and if you know someone who has Alzheimer’s, be patient and understanding. Offer support to those you think might need it. If you are financially able, please consider donating to Alzheimer’s research or support for patients and their caregivers.
Thank you for reading. If you have had a similar experience, I would love to hear from you and would greatly appreciate any advice or tips you might have.
For more information on Alzheimer’s, you can visit the following resources.
Answers About Alzheimer’s, Part 1 – New York Times
Answers About Alzheimer’s, Part 2 – New York Times
World Alzheimer Report 2012: Overcoming The Stigma of Dementia – Alzheimer’s Disease International
Overcoming Stigma – Alzheimer’s Association
A Loved One Has Been Diagnosed With Alzheimer’s Disease: Now What? – Fisher Center for Alzheimer’s Research Foundation
Alzheimer’s Society: Leading The Fight Against Dementia
Alzheimer’s Disease – NHS
You can donate to support for individuals with Alzheimer’s and related diseases, as well as their caregivers, at the following websites:
The Alzheimer’s Foundation of America (US based)
Alzheimer Society Canada (Canada based)
Hong Kong Alzheimer’s Disease Association (HK based)