We hear about Alzheimer’s and dementia more than ever as the World Health Organization reported this year that it now affects over 55 million patients around the world. The Lancet Public Health released data projecting global dementia cases to triple by the year 2050. The prevention and cure for memory diseases are vaguely emerging but there seems to be a great ambition around the world to find answers. Most people know of the simple signs of dementia which are forgetting names, places, and time. A little over 5 years ago my grandma began showing the first signs of dementia which has now been diagnosed as Alzheimer’s. It is important to note that dementia is the umbrella term used for the various diseases that cause dementia, such as Alzheimer’s. Before Alzheimer’s and still today, my grandma has always been the most vibrant personality in the room. If you have ever met her, it is quite unlikely you would ever forget the experience. There are lots of theories about the loudest person in the room, but I know that my grandma more than anything just wants to put a smile on someone’s face. My most fond childhood memories were always with my grandparents and it is simply because my grandma did everything she could to make my sisters and me happy. More than that, she wanted us to have fun and she taught us exactly how to do so. Going to sleepover at grandma’s house as a kid meant I got to have all the sweets my parents never let us have, stay up late watching movies, and have a big breakfast in the morning.
My grandma’s name is Joanne and she grew up poor in a house of 6 children in Harvey, Illinois. After her house burned down as a child, she never was the same. But because my grandma knew what it was like to have nothing, she made it her priority that her children and grandkids got to enjoy life in the ways she never did. From unforgettable Christmases to eating all the sweets a kid could dream of to learning to play all the classic board and card games, she made my childhood as happy as any kid could ever ask for. My grandma likes to have fun, she has always been a kid at heart. Some people didn’t like this about my grandma, but only because she was misunderstood and her energy was hard to match. Who we were as a child is most aligned with our most authentic selves. I believe that because my grandma refused to ever let life become boring, her light continues to shine brightly with a disease that is supposed to dim her. I want to start with a mindful disclaimer because I know that memory diseases affect every single patient differently. I acknowledge that this is only my grandma’s story and that I can not provide any medical evidence for her current state of being. This article is dedicated to just a few of the many ways that my grandma has shown me how the soul remembers everything that the brain forgets.
Time
Unless you are an excelled monk, time is the most controlling aspect of a person’s life. Time tells us where we are concerning the past, present, and future. This includes age, the current year, seasons, and responsibilities. For a person with dementia, time is elusive. My grandma does not know upon waking up what day, year, or month she is in. She also does not understand what an hour or an entire day feels like anymore. With dementia, my grandma is forced to live in the present with no recollection of the recent past or future. All she knows in every waking moment is what is being placed in front of her at that time. My grandma doesn’t worry about things like when bad times are going to end. She has no way to think of bad events past the moment of learning about them. If someone falls ill or has a problem, she will forget about it just as soon as she learns about it. I view this as a blessing because she cannot dwell on the bad things in life, and I don’t think she would want to anyway. Though time keeps us constrained to reality, I like to think that one of the blessings of memory loss is to never waste time worrying about things that keep us from living in the present. When my grandma is surrounded by the people she loves and who support her, she is always ready to have fun and embrace life to its fullest. Of course, this means she needs 24/7 monitoring to help her know when to eat and take care of herself, but it does not mean she is hopeless. Our souls exist without time, they exist infinitely.
More than anything I would love to spend a day with my grandma before her disease, but I have come to accept and love the person she is today. I know that her concept of time will continue to diminish more and more, but I hope to continue viewing this as a rather beautiful, and equally sad, process. I talk often about the beauty of duality, that one thing cannot exist without its opposite. With her living in the present moment, she thinks only of what is most important to her; having fun and being with those she loves. For someone like myself who is constantly worrying about where I am going to be in the next hour or day, it is a breath of fresh air to speak with my grandma who brings me back to the present moment. I never know when the day will come when even the present moment becomes inconceivable to her, I make every moment with her count. Like every person I meet, I talk to my grandma like she has no disease. I make a conscious effort to answer every repeated question like it’s the first time she asks it. I still ask her for advice, I tell her jokes, and I still let her see me cry while sharing my deep emotions. No matter what, my grandma is still my grandma and time will never separate the connection we share.
Laughter
My grandma loves to make people laugh, even with her dementia she is undoubtedly always telling jokes and playing tricks on the people around her. Her confidence has always been immeasurable, she could, and still can, walk into any room and talk to anyone from any background like they are a long-time friend. My favorite way to see her humor is in restaurants when she tells the waiters things like her husband is cheating on her with the weather lady or that she didn’t like the meal and “that’s why there is nothing left on the plate.” What I admire about my grandma is that she can engage with anyone in the same way, she doesn’t treat anyone differently. What is even more incredible, is that she can find this same joy and humor with her dementia. Many things have changed about my grandma since she started showing signs of dementia, but her laugh is still the same. Her voice and presence is unmistakable. The moment she enters a room, it immediately fills with her light. If with this disease you indeed return to your soul’s true nature, then my grandma is purely a woman of joy and laughter. The misery and sadness that this disease evokes are meaningless when I hear the sound of my grandma’s laugh and even more when I am laughing alongside her. I don’t know what my grandma will be like in the next month or year, but I know that I will never forget the sound of her laugh.
Pain
My grandma did not have an easy upbringing and I only became more aware of this as her disease began to manifest more and more. How can it be that my grandma does not remember what day it is, but she can remember the specific words her father would say to hurt her mother? She knows that her father was abusive and she knows that her house burned down as a child. She knows that she grew up having to fight her 6 siblings for resources and that she misses her deceased mother very much. I believe that pain, real pain, can bruise the soul. My grandma doesn’t remember when her mother died, when her house burned down, or how her father met her mother. I think she remembers these events not because they are memories, but because they are deep-rooted emotions that live within her. This is the side of her disease I hate most, that she still feels pain from her past. However, it helps me to know her even better. I ask her deep-rooted questions not because I’m nosey, but because I genuinely care. I want her to know that someone cares, even if she forgets. As relatives of a memory patient, we have to work hard to constantly provide reassurance just as much as our loved one forgets. It is important to never give up, especially when it is clear someone gave up on them at some time in their life. Even if she can’t remember a lot, my grandma still deserves the same love that a normal person does. She deserves the same attention, the same conversations, and the same amount of care. She is not a hopeless victim, she is a beautiful soul with as much infinite potential as any other human.
The reminder from this is that it is so important to have authentic conversations with people we trust. When we bottle in hard emotions or memories, they will eat at us. I don’t know if this is the reason my grandma has this disease, I am not a medical doctor who can decide. But I do think that my grandma would have been less confused, paranoid, and troubled if she had an outlet to share these pains with at a much earlier age. It is never too late to share your story. This doesn’t mean you should go around dumping your traumas on every person you meet, this isn’t healthy. It means you should find someone you trust, and share your story with them. I have found each time I have done this, there was not just one, but handfuls of people in my life who dealt with similar situations I went through. There is no reason we should ever be alone, not in memory loss, pain, trauma, sickness, or even minor discomfort. My grandma was always an advocate for the people she loved, and I know now that this passion came from the pain she held deep inside. Now I and the rest of my family get to be this comfort for her, and I feel so blessed to return the favor even if it cannot amount to how much she has provided me in my life.
Faith and Love
I don’t remember while growing that I ever talked to my grandma much about faith. Now more than ever in the thick of her illness, she loves to talk to me about God and faith. Almost every time I talk to her she reminds me that God created all people equally, no matter what you believe or who you choose to become. This is usually her response when I start to complain about a situation or person, she only provides positive insights. Instead of finding a reason to hate a person, she gives me a reason to love them. Maybe not to love them as being a part of my life, but to love them through recognizing we are the same. My grandma has a deep love for her mother, she can still quote her. If I am having a tough day, she tells me what her mother told her, “God doesn’t give you anything more than you can handle.” I will never forget the day I called her and said that I “had a lot of weight on my shoulders right now.” She replied, “Well it’s a good thing you have strong shoulders then.” It is these moments when she surprises me with her disease that I start to think it is no surprise at all. My grandma loves her family and her faith and that is something a disease could never take away from her.
My grandma likes to remind me multiple times when I see her that if I need any help at all, to call her up and that she and my grandpa will do anything they can. She offers a solution and a space of comfort even before there is a problem. This is something I can never be more thankful for, she has helped me and my family in immeasurable ways. She is at her core a selfless, loving, and beautiful woman. If she were any other way, she would not be the way she still is now with the progress of her disease. My grandma loves The Wizard of Oz, it is her favorite movie in the entire world. I think that her Alzheimer’s is much like the concept of Oz, it seems big and mighty but in reality, it is just a little man behind a projector. My grandma’s Alzheimer’s is the Oz behind her beautiful, grand soul. This does not redefine her. The progress of this disease is just like the yellow brick road, and I know that it is leading her somewhere beautiful, somewhere over the rainbow.
