I know what you’re thinking. What could possibly be cute about Alzheimer’s? Perhaps a look at the flip-side will help you see what I see …
No hair, no teeth, no problem. Adorable anyway! Cake smeared, mismatched socks, pants on backwards, shirt inside out. Proud moments of doing it all by herself! Spilled milk … leaky diaper … oh well, accidents happen.
You walk out of the room and when you return to see smiling through tears, it’s as if that five minutes was akin to five days. A gift from the dollar store is like you’ve given the moon. Your presence and simple gifts evoke over-the-top emotions. “Logic will get you from A to Z; imagination will get you everywhere,” Albert Einstein once said. Tune into the baby babble … “There’s more than one way to tell each other things, and there’s more than one way to listen, too.” Katherine Hannigan (children’s author) was onto something there.
When the likeness of baby years return in later years we lose our ability to see the cute side. We often struggle against it, desperately clinging to what was. We push it aside as if it’s frivolous or foreign. This is especially evident in caregivers of those diagnosed with Alzheimer’s. Accepting that our loved one will return to an earlier self, time and place, is one of the most complex sides of caregiving. You see, it requires us to embrace our own inner child along with embracing theirs. It challenges us to make a drastic mental shift and meet them where they are as a “former self.” When Your Grandma Forgets isn’t a read solely for children.
My mother often tells her helpers, “this is my daughter Maryann.” Yet, that role I once played is now little evidenced. I’m still her daughter but I’m more like her mother. The hideous disease of Alzheimer’s has stolen away the mother who I could go to and share the “bruises” of life. Heart-felt intimate mother-daughter conversation has disappeared. She looks to me to satisfy her basic needs and implores me to enter her imaginary world. Her words are more frequently resembling baby-babble, summoning me to shift and adapt. I caress her hand and encourage her to “slow down and say it again please.” There’s more than one way to listen. I may not always understand but I’m listening, still.
It’s hard to pinpoint exactly when Alzheimer’s began pushing my mother into an earlier time and place. Twelve years ago, at my parents’ 50th anniversary party my sisters noticed a visible awkwardness in Mom. It was as if she couldn’t adjust to the element of “surprise.” My first exposure to the cruelness of Alzheimer’s came during a visit seven years ago. As bits of food landed on the floor during a meal, my mother glanced down at the collection and exclaimed “well, they’re not mine because I have my socks on.” I left the table, went into my bedroom and wept over her disconnect.
Food is dropped during every meal these days. I abate my grief with the proud fact that she’s still doing it herself … while I collect missed spoonfuls from the bib meant to shield her clothing. Yesterday, I arrived at the care center to find her napping. Seeing her curled up under that sunshine-color blanket brought happy tears to my eyes. Her position resembled an adorable worn-out toddler, napping peacefully. I whispered in her ear, “hi Mom … are you dreaming of something good?”
Her eyes widened slowly as she whispered with a child-like grin, “I want to take the bus to Ramsey and see Mommy and Daddy.” So, I ran with it, embracing the comfortable place her mind had taken her.
“Okay. Let’s go outside for a cup of coffee and tell Dad about your idea.” There and then, Mom repeated her desire to get on the bus and go to Ramsey. Struggling with her imaginative reality, Dad said “they’re not there because they’re …” I cut him off before dead slipped out, wanting to save my mother unnecessary grief.
I take her hand and ask, “what do you want to tell them when you see them?” She smiles through tears welling up in her eyes and joyfully declares, “I’ll say I love you!” Then, as fleeting as her idea arrived, it left.
My heart melts over this “cute side of Alzheimer’s.” So pure and innocent. So present in her reality that now brings comfort and joy. I couldn’t let that be stolen away, too. My father is struggling with how to be instead of fighting what he can’t stop. His grief process is very different than my own. I am losing my mother. He is losing his bride of 62 years.
In the early stages my mother put a voice to the long-term effects of stigma. “I just don’t want to have another seizure. I can handle this, but I couldn’t handle that.” The bus was her escape; it was the only way she could get anywhere independently. A seizure disorder kept her from driving until she became free of it at 36-years-old, thanks to a brain surgeon ahead of his time (then 1969). I’ve often wondered what Mom would say in retrospect if she could. Alzheimer’s has stolen away more than any of us could have imagined … and its shame and stigma have attempted to etch a place in our lives.
During last year’s senate hearing on Alzheimer’s, Seth Rogan shared the harsh reality of this kind of loss. “Unlike the top 10 causes of death in America, Alzheimer’s can’t be slowed, stopped or prevented.” He pressed on, saying, “it kills more people than breast cancer and prostate cancer combined.” He confessed to not understanding the severity, length or “ugly truth” of the disease until his mother-in-law entered the battle, diagnosed at just 55. I believe, that’s the unfortunate case for most every caregiver. A teacher by profession for 35 years, his mother-in-law “forgot who her loved ones were, how to speak, dress herself or go to the bathroom by herself, all by the age of 60.” The havoc wreaked upon his family, in addition to the shame and stigma associated with the disease, inspired Seth and his wife, Lauren to create Hilarity for Charity: a new approach to fighting a terrible disease.
I do what I can to fight against the shame and stigma. My mother faced enough of that early on in life with epilepsy. The Oscar Award-winning film Still Alice is a true-story depiction and it’s putting a face to early-onset Alzheimer’s. It appears to also be making a case to obliterate the shame and stigma. Julianne Moore brilliantly emulates the harsh realities of living with the disease and the ongoing struggles family and friends face — long after the person diagnosed can grasp it. No matter the age of onset, its sting is everlasting and its fall-out enormous.
Perhaps if we struggle less with what we cannot stop, change or cure and put our energy into boldly loving them through it, more people will understand and advocate. Then, just as cancer was once labeled hopeless and incurable, lives can be spared through research and treatment, and perhaps even a cure.
Meet your loved ones right where they are. Embrace the cute side of Alzheimer’s. Nurture the child inside of them that is emerging more and more within plain sight. Spend less time in grief and more time in gratitude. Create safe havens such as a Memory Cafe.
Author Mitch Albom once said: “Faith is about doing. You are how you act, not just how you believe.” Please, go and do something. Together we can magnify hope in this hurting world.