Last time I wrote something that exceeded 140 characters was during my English high school final. However, this issue’s theme “Memory” hit a cord, so here goes.
One of the very earliest memories I have of my maternal grandmother, Mama Noura, was her letting my father know that elementary students are not prepping for their masters degree, and that they should go have fun with their cousins. Needless to say, we did.
My last memory of her actually semi-knowing who I was, was around 2 years back, when I stayed over for a month and every time she turned her head, she’d ask me where my mother was. Literally every time she turned her head. Around 20 times in a single setting.
We first noticed her temper really getting shorted by the second, and wouldn’t remember names. She was confirmed to have Alzheimer’s Disease around 5 years back. The grandchildren’s names were first to go. She looked at me and knew that she knew me. From the bottom of her heart loved me, but could’t call me by my name. That frustrated her, and I aggravated her when I’d help her out. “you think I’m crazy? You think I don’t know your name?” She was echoing her own fears.
The closest thing young people know about Alzheimer’s Disease is unfortunately Grey’s Anatomy. I’m thankful it’s has been raised to the younger demographic in a TV show as popular as Grey’s Anatomy. However, there is a misrepresentation of the disease as merely affecting memories. The viewer sees Meredith’s mother Ellis diagnosed to have Alzheimer’s, yet fully functioning throughout the show, except for the small part of not knowing who Meredith is. Another lead character later on the show, Richard’s wife Adele, gets diagnosed. Again the viewer is lead to believe only her memories are affected, by not recognizing her own husband and falling in love with another man at the nursing home.
What Grey’s Anatomy forgot to represent to you, or tried and miserably failed, that it’s not just the memories that are taken away, it’s the cognitive function as well. It sucks the life out of you. It changes you, to the worst.
Your personality, your core, what people loved about you, what made you YOU, regardless of how cliche that sounds. Your loved ones will look at a hollow representation of a person that once was.
Grey’s Anatomy writers again chose to create this myth, and called it The Gift, another event in Ellis’s disease, where she literally wakes up one day, with her brain fully functioning. To the degree she’s disappointed in her own daughter she hadn’t found a cure yet. Because if anyone is capable of miracles, it’s Meredith. Why is that physiologically impossible? There are 2 main cells in the body that never regenerate— the brain and heart cells. Your loved one will never have a Gift. Your loved one will never wake up fully aware of his/her surroundings, because once the damage is done, it’s done.
What media or your neurologist won’t tell you is that by the end of it, you won’t recognize them. My analysis of what was once a decent show is a normal reaction due to the direct effect it has on my family members. How it gives them false hope, or doubt that maybe the doctors here aren’t doing enough. Because why is Mama Noura not acting like Ellis?
I’m here to tell you it is a dark path that many are walking, but few are speaking out about. To tell you that there is no light at the end of the tunnel. Their memories will fade, and so will their personalities. Albeit sad, every once in a while, a glimpse of them will shine, and that should suffice. My Mama Noura was borderline OCD clean, she still wipes her own dishes before using them. She still won’t wear anything that hasn’t been washed to death. She still refuses to eat alone. She still won’t eat or drink anything that isn’t burn-your-tongue hot. She can still wear her kohl and lipstick like a boss. She doesn’t remember how many children she has, but still calls the driver by his name.
I write this for one purpose, and one only: awareness!
First, People don’t change personalities, in any way, out of old age. The brain doesn’t work like that.
If your loved one started to become angrier or even calmer than usual, be alarmed.
If they started to forget more than usual, be alarmed.
If they developed a new social anxiety (in fear they’d embarrass themselves in public), be very alarmed.
There is no one single symptom I could point out, although I wish there was. At the very beginning of her disease, Mama Noura knew she was losing small bits and pieces, she knew she couldn’t remember if she had prayed or not. But she was far too proud to voice her concerns, and far too smart for her symptoms to show.
It took my family 3 years to take her to a doctor and diagnose her, which progressed the disease faster that it should have. She could've been better for longer.
Second, Alzheimer’s CAN NOT be cured.
I tell you and my family that still stuff her with so many drugs, in hopes she would one day wake up and call their names. It can only be slowed down.
Maybe out of subconscious guilt, my family took her to doctors around the globe. She has seen to doctors in 4 different continents. Regardless of the numerous times I’ve reminded them, that as much as I wish I was wrong, there isn’t a cure. If anything, all that traveling around exhausted her.
Third, it’s not your fault.
Mama Noura was the healthiest person I know; walked every day, ate her fruits and vegetables, which prevented her from the 21st century’s epidemics, hypertension and diabetes, but not from Alzheimer’s.
Don’t blame yourselves for something you did or did not do.
Fourth, love them no matter what.
Love them when they are unable to love you back. Love them when they hit you because they think you’re a stranger. Love them through sickness and health. Love the person they were, because that’s who they are. Hold onto the person you grew up loving and cherishing. Keep that person alive. At the same time, don’t let the disease halt your emotions towards them. They can’t help it, but you can. Love who they were, but don’t hate the person they’ve become.
I love my grandmother for so many reasons, but mostly for the sacrifices she made throughout her life. How she was a progressive thinker at such a conservative time. She is an illiterateorphan that married way too soon, yet managed to raise thinkers and influencers. She valued education above all else. She practically raised us and my cousins when our mothers were struggling with their studies. Any other woman of her age would have urged her daughters to drop it all for their husbands. Not my grandmother.
My greatest regret to this day that she never saw me graduate. She was so proud of me when I got accepted. I know she would have loved to be there, and I would have loved if she was.
Fifth, don’t let them know you know.
We’ve all misplaced our phones, called people by the wrong names, or prayed twice. There is a huge difference between forgetting, and knowing you forgot and can’t recall no matter how hard you try.
There are pamphlets on top of pamphlets on how to deal with an affected loved one, but it all comes down to the simple fact of letting them enjoy the memories and people as long as they can. If they asked if they’ve prayed, that means they don’t remember praying, which means you act like you know they haven’t, that boosts their confidence. Even if it means praying much more than 5 times a day. Unless it starts to wear them down, try to gently remind them they already did.
Sixth, it’s not about you.
As obvious as that may seem, it can be pretty hard to apply. Standing idle as a person you hold dear gets eaten away is difficult.
I avoided my grandmother for a good 2 years because I couldn’t fathom remembering her like that. So my smart plan was to see as less of her as possible. A stupid decision I’ll have to live with for the rest of my life, because I preferred to cater to my feelings, than her needs. Also, miss the last few years she actually knew who I was.
Like most grandmothers, she simultaneously complained about our weight, and never stopped shoving food down our throats from the moment we came in. To this day, I’ve yet to try a better scrambled eggs sandwich with a side of mashed potatoes.
Maybe my grandmother’s memories have been eaten away by a disease we know so little about, but that shouldn’t happen to your loved ones. Be vigilant. Keep their memories alive.