Family

What My Grandma’s Dementia Has Taught Me

She looks at me but she doesn’t see me. I can sense the wheels turning in her head. Her hippocampus scans itself for any type of clue — nothing. The cortex fails her as well. She doesn’t know me but she knows she is supposed to. I smile at her, with both sympathy and disappointment, and reassure her that it is okay. Not for a second longer can I bear witness to her frustration of trying to put together who I am. I turn my face away and pour her a glass of water in an attempt to conceal the frown deeply etched into my face. Who is this woman and what has she done with my grams?

I have experienced very little loss. My nana died when I was 8. The nurse ran to shut the curtain as I turned the corner to her room in the ICU but it was too late. I saw her face ashen and grey with her eyes rolled back and mouth agape. In that moment, I learned that death did not look pretty. That it was ugly. Naked. And that it hurt like hell. That was the first and last time I experienced grief from losing a loved one. Until now. The irony is that this loved one who I am grieving, my nana’s youngest daughter, is still here. Technically, at least.

When you lose someone, you lose everything between you two. The memories. The references. The jokes. Around Christmas, I find myself on the verge of tears for not having asked my grams for her Paul Heney corn recipe while she still remembered. I have to stop myself from trying to dig through what is left of her brain. It would only make me frustrated at her for not remembering and her frustrated for not understanding. I have to accept that the 20+ years between us has been lost. My grams had a starring role in my childhood. Her and I spent thousands of hours laughing over her stories about high school boys in the 60’s and watching Shallow Hal on repeat. I have her legs. And her small feet that are shaped exactly like the wooden clogs that originate from our Danish ancestors. I worry like her. Sit like her. I love like her.

Dementia is infuriating because it taints the image of your loved one that you so deeply revere. It rids them of their inhibition causing them to giggle and yell hysterically about body parts and poop and cuss words (amongst other things) like a toddler would. Not too unlike Benjamin Button — Dementia reverts one’s mind to that of a small child incrementally over time. Sometimes inch by inch. Sometimes by leaps and bounds. And like I would for a small child, I have apologized on my Gram’s behalf more times than I can count. When she flipped off a random stranger at a restaurant. Or when she told my boyfriend upon meeting him for the first time that she loved me even though I was a “real bitch”. I apologize before I bring people, and especially their children, to an event where she will be and inevitably make an inappropriate comment or gesture or both. Sometimes I want to scream, I don’t know this woman, I swear! But I don’t scream. And not because I do know her but because I did. And the woman I used to know deserves at least that much from me.

Grams was an electrical engineer. She was the only woman in her major at CSULB. Growing up, I bragged about her. About how she was not just a grandma who baked orange rolls but also did calculus on dinner napkins with a pencil. About how she had a baby at 20-years-old, traveled to Cairo, lived in South Africa, and got married to my grandpa at Knott’s Berry Farm with trash cans full of Budweiser. But today, she can’t even tell time. It is hard for me to brag about her anymore and I feel like an asshole. I feel like I am failing her as a granddaughter. That I should be more accepting and less angry. It would be a small piece of wisdom from a woman I deeply respect, my mother, that eventually brought me the clarity that I needed.

My mother, despite being Gram’s ex daughter-in-law, treats her with more love than most. She is patient with her when we ashamedly are not. She laughs with her when we roll our eyes. My mother truly looks at her after we have written her off as long gone. I treat her with love and patience out of respect and gratitude for who she used to be. And who she used to be was a woman who took great care of me. I felt like every piece of my heart was ripping at its seams when my mother first said these words to me. I instantly felt shame. Then guilt. But in the end, all I felt was newfound love and empathy.

How would I want to be treated by my husband, my children, my grandchildren, and my great grandchildren if I could no longer remember who I was? If I could no longer remember them? Or how to take care of myself. How to tie my shoes. How to abide social rules. How to buckle my car seat. I would hope that the love I gave them during all the years that I was cognizant, would inspire them to love me when I no longer knew who they were. Or even — who I was. As a mother and a grandchild of someone with Dementia, I try to remember this. That this could be me.

Dementia has been the greatest teacher of how to love someone unconditionally when it isn’t easy. How to love with patience when it would be understandable if you lost your temper. Dementia requires mindfulness to remember that it is her disease doing and saying these things, not her. It requires empathy for me to treat her as not just the shell of someone I once loved but as a human being who is deeply confused and scared. Dementia has taught me to not take time for granted for tomorrow is an illusion. I wish I had hugged her more. Asked her more questions about what it was like growing up in Brea or what she thought about John F. Kennedy. I wish I took more video and pictures of her. What I would give to once again walk along the beach in Costa Rica with her after laughing over a couple of cold ones or sit beside a lake in Maine on a warm summer day. Every now and then, although occurring less and less, my grams reaches for my hand and squeezes it. I immediately feel the urge to beg, Please come back to me, I need you. I need my grandma. But instead I just squeeze her hand back because by the time the right words will have left my tongue, she will have forgotten me. Maybe forever.

Sometimes I think that losing her to an illness would have been easier than losing her while she is still living. I am angry at everyone and no one for what this disease has taken from my family and left us with to take care of for possibly many years to come. I know in my heart that if she were about her wits that she would hate the idea of us trailing after her and supervising her like a small child. She would cry at the thought of us being in pain over her. Not in her wildest dreams would she have thought she would end up this way and if she could have helped it — she would have done everything in her power to make sure she never would have.

Her disease is progressing rapidly. Grams is no longer safe to be around. She is becoming a danger to herself. She packs her suitcase in the middle of the night with the idea that she is going to visit her parents. Her parents who have been dead for almost 20 years. Her mind has regressed to that of an infant’s — searching for the comfort of her very first sources of love — her mother and father.

I do not know how much time I have left with this body which used to house the soul of the woman I loved. The woman who I used to run to after being dropped off for the night to watch movies and eat cherry tomatoes and secret mouthfuls of whip cream with. What I do know, is that I will love her until her very last day. I will reach for her hand, squeeze it, and thank her for everything she has done for me. For being everything a little girl could possibly ask for in a grandma. And that because of Dementia but even more because of her, I will love more. Laugh more. And forever cherish these beautiful little pieces of magic — our shared memories — that she has left behind with me.

I will remember for both of us, grams.

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