Transcriber: Quynh Anh Nguyen Reviewer: Keira White
When my dad called me in September of 2018
to tell me my mom didn’t recognize him anymore,
thought he was a stranger, and wouldn’t get out of bed,
I told him I would get on a plane and be there in two days.
When I arrived, I was shocked by her appearance.
She had lost so much weight.
She looked 20 years older, could barely walk;
it was a gut punch.
I’d seen her just five months prior; so much had changed.
We’d been monitoring her dementia for around three years, but this was new.
This was Alzheimer’s.
Her doctor confirmed it. She would need special care.
My dad, on the cusp of his 80th birthday, was going to need help in helping her.
My job allowed me a three month leave to move back home to assist.
My amazing sisters, both single moms, living in different cities,
with family responsibilities,
worked tirelessly to help me from afar.
Is our mom going to die? What would happen to our dad? Could this happen to us?
We needed to book so many new doctor’s appointments.
Her neurologist, her primary care, so many new medications to figure out.
My sisters and I were stressed.
My dad, the stoic, was stressed.
I'm a firm believer in mindfulness.
“Don’t sweat the small stuff” is such a wise phrase.
We forget that we forget the bad, the fear.
We forget that we forget the debilitating stress
once we move past it, so much so, we actually become bored again.
I forced myself to remember this numerous times:
“Get through it, you will be bored again.”
But is it possible to not sweat the big stuff?
I said to my dad and sisters:
“We don’t know what will happen in the future exactly,
but what do we know now?”
My mom, now in need of toddler-like care and supervision,
was also exuding this child-like wonder
about everything.
So complimentary, so sweet, so grateful.
I would say to her: “Mom, would you like some coffee?“
She would reply:
“Yes. Oh, sweetie, thank you so much.”
“You are looking so good today.”
(Kiss sounds)
She was freaking adorable. There was no judgment, no past.
She lived only in the moment.
A social worker told us that people in my mom’s condition
responded well to big smiles, animated faces,
to never negate whatever unusual thing
they might say, but simply play along.
Be positive, be creative.
My mom, Nonnie, as her younger brother nicknamed her when they were kids,
was bored most of the day.
As a reading specialist in elementary education for 30 years,
she could no longer read.
She could barely operate the TV.
She was frustrated.
Her frustration led to confusion. Her confusion led to worry.
Worry led to tears.
She needed more stimulation: a purpose, a project.
When I was in high school,
my mom and I watched a documentary on the life of Jim Henson,
founder of The Muppets, my favorite TV show of all time.
Obsessed with drawing, cartooning and making up my own wacky characters
in front of the bathroom mirror, I was completely hooked.
I said to her: “Mom, I have to try something like this”.
She, the most avid supporter of all of my crazy ideas,
looked straight into my eyes, held my gaze and said:
“This fits you perfectly, yes, go for it”.
In college and beyond, puppetry became a wing of my artistic pursuits.
My mom became my number one fan.
She even performed with me on occasion.
My all-time favorite moment was when we puppet-bombed the St. Louis Zoo.
I was dressed as this giant lizard camel,
full costume, hand puppeted creature with a loud, shrill voice.
The premise was that it wanted to look at all the animals,
but was scared of all of the children.
My mom took this monster by its fake hand and led it through the zoo,
pretending like it was her own frightened child.
It kept hiding behind her. Kids loved it.
I was floored
by her improvisational comedy, her acting, her commitment.
We had natural chemistry.
Could this work now?
With 12 hours in the day to kill, why not give it a go?
Only problem: no puppets.
So I did a quick search of the house, went to my sister’s bedroom and grabbed
these two very old and long forgotten stuffed animals,
a raccoon and a bear.
I put my fingers behind their necks and under their arms,
and through a series of twists and turns, got them to move.
I ran back to my mom, knelt down
and simply started talking to her about her day.
She loved it. She lit up.
She started talking back to them, wouldn’t stop.
A new game was born.
I know puppets are used with Alzheimer’s patients
to help soothe them, give them a friend to talk to,
Baby dolls are often used, but this was different.
This was our shared pastime. My mom jumped right into it.
The make believe, the fun, the play, it was amazing.
With permission from her doctor,
I started filming these interactions and posting them as a web series
called Nonnie Raccoon and Bear.
My mom and I covered a lot of ground.
Love, friendship, her likes, her dislikes, even her thoughts about her own confusion.
And through it all, her joy, her infectious laughter was captured.
Time capsuled.
The response was overwhelming.
People from all over were telling us how much they love the series,
how therapeutic it was, how it helped them deal with their own fears,
how it helped ease others and their families.
We realized we were part of a much larger community.
We were not alone.
The most profound impact was maybe on my dad.
At first, he was unsure of what we were doing,
just so distracted,
stressed and constantly worried about his wife of 50 years.
After about the third episode, though,
when I sat him down and played it on the computer
with my mom sitting right next to him, after seeing her belly laugh
on almost every single line.
After then reading the responses,
seeing the impact my mom’s current life was having on others,
he was hooked too.
He wanted to get involved in the filming. He became another character.
He was giving me ideas. He was treating Raccoon and Bear as real.
It became a three-person project.
My mom's condition continued to escalate.
She was barely able to get up and down the stairs,
was having more and more difficulty feeding herself.
My dad was struggling to attend to her, bathe her.
His health began to suffer.
After then hiring an in-home aid, after then taking her to adult daycare,
it got to the point where she needed 24-7 professional care.
We made arrangements to move her into a memory care facility.
Fear struck again.
Would she hate us for doing this?
Would she be OK? What was going to happen?
My sisters, nieces and nephews all pitched in to help relocate her
all under this strange shroud of gloom and uncertainty.
I made up my mind two weeks prior that raccoon and bear would go with her.
I actively tried to imprint myself on them as much as possible.
The last thing I did was put Raccoon and Bear on her bed
so they would be the first thing she saw when she walked in.
When my dad was first able to visit,
to our surprise, my mom was overjoyed to see him,
so proud to show him around,
no grudges, no blame, just love.
I joined him on these visits soon after, and continued to put on shows
for my mom with Raccoon and Bear.
We even made a final episode at her new home.
We had fun.
My dad got to be her husband again, not her weary caretaker.
She made friends with new residents instantly.
She participated in daily exercises, sing-alongs and discussions.
She was loved by everyone.
Our puppetry pastime, it bridged a gap.
A prodigal project from when I first left home until now.
A reunion but with my new mom,
who was so full of imagination, of hope, of play.
Only because of Alzheimer’s did we forge something new.
The fear of the unknown was quelled,
diminished by the creativity,
this humor, this beauty.
On November 12th 2020, my mom passed away from complications due to COVID-19.
We were so lucky to have a long goodbye.
I went home for seven weeks leading up to the end.
My mom went from recognizing us and talking a bit
to vacant shallow breathing, then just to staring off into space.
When visiting, we would retell our favorite family stories,
brush her hair, help her take sips of water,
and play her her favorite music.
One time when my dad went to visit her alone,
he decided to try playing Nonnie, Raccoon and Bear for her
from his computer, to see if it might cheer her up.
She immediately started to chuckle. They watched several episodes.
He came home and told me how well it worked.
A couple of days later, I visited.
She was completely unresponsive,
eyes closed and breathing through an oxygen mask.
I held her hand, talked to her,
then grabbed Raccoon, who was standing guard by her pillow,
and started improvising.
After about five minutes, I felt this rumble,
this giggle from deep inside of her, which then burst into a full laugh.
Her entire face was beaming, though her eyes remained closed.
She just laughed and laughed and laughed.
The day before she died, I was a mess.
My dad and I had camped out in her room holding vigil.
I sat by her bed, my arms draped across her.
In the previous days, I had been talking to her non-stop,
telling her we are all good, she can go,
that we were excited for her to move on.
But now I couldn't get any words out.
So I simply played our web series for her, putting the speaker up by her ear.
Was she hearing it?
Was this even working?
Was she listening?
My older sister was able to join us, and my other sister was on Facetime
when her breathing was almost non-existent.
I moved closer, I held their hand,
and all of a sudden her eyes started to open.
I called everyone over. She then looked at each of us in turn.
Gave a weak smile,
stared right back into my eyes, held my gaze,
took three breaths and was gone.
That look was a loud and clear message.
I heard you. I love you.
The mood in the room shifted from gloom to triumph.
I actually found myself clapping out loud for her like a standing ovation.
All of my efforts to communicate with her, and she had the last word.
The very thing we created together became the greatest comfort,
the greatest joy at the end.
The fear of letting go was transformed into the celebration
that she went.
(Sigh)