According to my mother, “I don’t have dementia… everyone else has dementia.”
I remember thinking as a child, how incredible my mother was. She was this strong, beautiful, graceful, talented, intelligent woman who could carve swans out of apples, lead a movement of immigrant woman towards fighting for their rights and voices, sew the most beautiful dresses for me and lift 50 pound boxes of books over her head when she worked at Ragweed Press.
She could sing in such a way that would bring tears to people’s eyes, learn skills like photography when she worked at W.P. Maund Photography, cook delicious food that would speak and move one’s soul to a beautiful place, manage, plan and facilitate government-funded multicultural initiatives and events, and yet, repair the toaster oven.
I remember my thoughts of my mom when I was a preteen… She gracefully danced our Bengali cultural dances, inspired people to fundraise for disaster relief in Bangladesh, especially after the cyclone of 1991 that killed almost a hundred and forty thousand people, and still go toe to toe with her brother in law who threatened to kill her sister, all while looking like she never broke a sweat.
She made sure I went to school with a hot breakfast and full belly every day, and reminded me to not open the door or answer the phone when I got home from school, because she couldn’t afford child care, and had to leave me, her seven year old home alone, because she was working one of three jobs, because she was a single mom and believed in honest work.
I remember my thoughts of my mom when I was a teenager… She sheltered me from her mental health challenges, so that I wouldn’t worry for her, yet ‘forced’ me to be exposed to what responsibilities I would have when she would break down.
She healed my wounds with pure love, but yet would be angry with me for getting hurt in the first place, because actually she was angry with herself for letting me get hurt. She giggled the most addictive giggle, and yet cried quickly and quietly in the sanctity of her bedroom, behind a closed door.
I remember my thoughts of my mom as a young adult… She taught me to be a strong independent woman, to never let anyone take advantage of me, yet despised that I would talk back to her, or challenge her opinion. And she inadvertently helped me recognize that I was just like her, which was both amazing and frightening, because although I wanted to be the gorgeous chameleon that she was, I never wanted to feel the bitterness that she had for her life or become the narcissist she was… I know that’s a bold, horrible thing to say about ones mother, but it wasn’t until my late thirties that I even realized that for my entire life, I (and my dad, my mom’s ex husband) had been on the receiving end of it. Because all I could think about was how much I loved and respected my mom, and therefore defended the narcissistic behaviour.
I know my thoughts of my mom now… My mother and I had a difficult relationship, as many parents and daughters do, and I always considered that normal. As her memory slipped, partly due to depression and partly due to diagnosed dementia, I started to realize that there was so much that I would never be able to tell her, and that telling her wouldn’t serve her anyhow. I got so used to the stories that I had made up from our past that I started to recognize that I would never be able to expose her to the new healing stories we could ‘write’ together. I started to come to terms that she will never know how I felt about her struggles with depression and dementia, and that it is okay that she doesn’t know, because it doesn’t change anything.
But there was/is so much I want to say, so I share it with you instead, because I know I’m not alone in this…
You will never know.
You will never know how much I mourned the life I was supposed to have with you.
Dementia is hard. I wish I could remain ignorant about it and so many other challenges and conditions. I wish I didn’t know about mental health struggles. I wish I didn’t know about autism. I wish I didn’t know about cancer, racism, miscarriages, heart disease, abuse, addiction, poverty, etc… Because if I know about these topics, it’s because they directly affect my life in some way.
I never could’ve imagined that this would be my life with you now. I honestly believed that you would be the grandmother that would have my children climbing all over you, in happiness and bliss and you would be helping me and my husband raise our kids. How naïve, because that life to be is gone and it’s never coming back.
You will never know how I watched you drift into darkness.
You have had a tough life, and you have experienced challenges that I don’t believe others could’ve handled, but you did. And somehow, I still saw you with lightness, beauty, grace and power. Yes, you always had dark corners of your mind that you would hide in, partly to protect yourself, but also to justify feeling miserable. I didn’t know it was depression when I was a child, but as an adult I understand it much better than you know. But, even through all those struggles, you eventually came back… And then gradually, your light was eclipsed by your illness and there was no bringing you back, and it broke my heart to watch.
You will never know how much I struggled making a decision for your life.
You stopped being reasonable. Your decision-making competency was gone. And although I begged you to not ‘make’ me do what I had to do, to take over because I had power of attourney, you couldn’t reasonably make any decisions anymore. So, I made a decision, which made me feel dizzy. I started to shake, weep, and hold back the vomit when I officially ‘activated’ my power of attourney, because it meant I was taking over your life, and that hurt to know that I had to do that for you, because I didn’t want to.
You will never know what I have done to help you.
I don’t require the recognition from you or anyone else. I choose to live a life that allows me to help you regardless if you see it or not. Since it’s not the kind of help you want, you don’t see it, and that is okay. I still take the responsibility to help you, and I know my true intentions and because I know it is my solemn duty to do so.
You will never know how overwhelming this is for me.
This isn’t about me. It’s about you, so I feel selfish for even saying that it’s hard. I know in my heart of hearts that this stuff is happening FOR me, not TO me, and I will eventually find the gratitude and opportunity within the lows. Yet, at this moment it takes so much energy, and I’m tired. I’m so, so tired. I’m exhausted, feel helplessly alone and it’s overwhelming.
You will never know how much other’s opinions bothered me because they thought I was leaving you alone.
I want to say what other people think, doesn’t bother me. But, I felt it in the way they talked to me, they way they whispered amongst each other, when I would catch wind of those whispers or be told right out, that they thought I abandoned you. And, I felt so guilty because I thought I was abandoning you too, even if I was just looking for a way to keep you safe.
They will never appreciate how many months I researched properties that would allow you to have your independence, yet keep us together in the same household and property. It doesn’t matter, because all they saw was that I left you by yourself, and because you felt that way too, they felt that same energy. Their opinions shouldn’t matter, but it did hurt. The hurt doesn’t matter though, because at the end of the day, they’re not the ones in my position. I am.
You will never know how scared I will become you someday.
I am trying my best to demonstrate to my sons, patience, because I know that this reality could be me someday, and I hope they can have patience with me. I know there’s no point worrying about this as my possible future, but the thought still creeps in when the overwhelm takes over. I see and feel such anger and bitterness from you, that I, on purpose have to remind myself that I am actively working on myself, my personal growth, so I won’t be that angry. But, I know that there is no guarantee, and I feel sad that I could possibly put my sons through what I am going through right now.
You will never know how much I love you.
It’s true. You cannot understand because you feel betrayed by me, your only child, as it seems to you that I took everyone else’s side except yours. How could a daughter side ‘against’ you with medical professionals, friends and other people who felt concern for you? You remind me how much you wanted me, a baby to love and to be your companion and how much you struggled in childbirth having me, and in life as a single mom raising me… and in your eyes, it was all for naught because you feel I betrayed you.
But mum… I do love you. And this is one thing I was wish you did know and believe… because it’s true… and I am so, so sorry that you feel so alone. I wish I could squeeze you tightly in my arms and just hug the belief into you, so you would know that I truly do have your back. I love you, mum… even if you will never know.
If you or someone you know is being affected by dementia in some way, there are people who can help. I wish I had more information that I could share, but a lot of it is such a blur because I am still living it now. If you want to know what my process was, if that helps you put one foot in front of the other, send me a direct message and we can chat.
For more information about how you can start your own business based on your ‘why’ or to purchase products, head to my website http://www.SarahKhanWindsorJunction.Arbonne.com Please note, that I do receive an income from products purchased from this link.
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From the bottom of my heart, thanks for reading!
Sarah, The Depressed Mom Boss