Grandmother’s dementia is hard on my family, but sometimes my Mom Mom shines through

“This disease is really hard on the people who surround it, but every once in a while, it gives you flashback to the person that you care about,” says Jo Pincushion, the Philadelphia storyteller featured in this month’s edition of Story Corner. 

Jo (Pincushion is her stage name) told a story with the theme “Flashback” at a Tell Me A Story event in July at Shot Tower Coffee in Philadelphia. The story is about her grandmother, who she now helps to care for with her family. Her grandmother was once a vibrant woman, but now she is slowly losing her talents and abilities to dementia. Yet every once in a while, the Mom Mom Jo remembers shines through.

Listen to her story above and read a transcript here. [Audio production by Kimberly Haas]

I’ve been helping my family take care of my grandmother for the past few months. My grandmother has dementia, and it’s made the past few years difficult.

This disease can be very hard on the people who surround it. My grandmother is confused, sad and scared. For one thing, she’s always asking if she can go home.

“Can I go home?”

“Are you here to take me home?”

“Is it time to go home yet?”

And I hate hearing my grandmother say these things, because when you’re uncomfortable and miserable and stressed, what’s the one thing you say to yourself to make yourself feel a little better? I want to go home.

My family is coping with this the way that any family would, really: through morbid humor. My grandmother has started to ask for relatives that have been dead for a while.

“Where’s Alice?”

“Uh, she’s been dead for 10 years. How ’bout you go join her?”

“Is Uncle Charlie coming to pick me up today and take me home?”

“Shit, Mom Mom. I hope so.”

This disease is really hard on the people who surround it, but every once in a while, it gives you flashback to the person that you care about.

There are characteristics of my grandmother that have never gone away. My grandmother still recognizers us. And I am thankful every day that, when I look her in the face, she looks back at me and she knows who I am.

My grandmother’s impeccable wit and humor is still here. In October, when I was watching her, she fell outside. She broke her arm in two places, and she had a little bleeding in her brain. And she ended up spending Christmas in a home.

It’s ok. She doesn’t remember.

She was so able-bodied when she was younger. She would walk to church every day. She was very active and very independent — so in other words, the bitch will never sit down.

And my sister in law had to say to her: “Mom Mom, do you remember in October you fell, and you got hurt. Do you know who was watching you? Joanna was watching you, and you fell and you scared her. It was scary.”

Without missing a beat, my grandmother looked at Heather and went: “Well, that’s disturbing. Who would want to stand there and watch someone fall?”

I know one thing about my grandmother’s personality that will never go away:

“Mom Mom, how do I look?”

“OK. What do you mean, ‘How do it look’?”

“How do you like my dress?”

“Ehhhh…”

She will alway be honest with me.

When she was younger, my grandmother sang all the time. My grandmother was with the church choir her entire life. When she was younger she used to perform skits on the front stoop of her home on Paschall Avenue in southwest Philadelphia. My grandmother even taught me how to sing.

She also had this annoying habit that I always remember. If you said one word — one word — that reminded her of a song, she would burst out into whatever verse of whatever song the word that you just said reminded her of.

Can you imaging doing math homework with this woman?

“The answer is 76—”

“Seventy-six trombones at the big parade / and a 110 cornets right behind—”

“God, Mom Mom! You are so embarrassing!”

I hated it. It was the most annoying habit.

As she got older and the dementia started to take hold, Mom-mom couldn’t read the lyrics to the songs at choir anymore. She couldn’t remember the harmonies. So she quit. She quit choir, and eventually she stopped singing.

I’ve said it before: This disease is hard on the people that surround it, but sometimes…

“I could have danced all night …”

It gives you flashbacks.

“… I could have danced all night and still have begged for more.”

She started singing again.

“I’ll never know what made it so exciting …”

Yes, this disease is hard on the people that surround it.

“…why all at once my heart took flight.”

But every once in a while, …

“I only know when he …”

… it gives you flashbacks.

“… began to dance with me, …”

It helps you remember …

“… I could have danced, danced, danced …”

… why you’re watching the person that you love so much and taking care of them.

“… all night!”

—

Toward the end of the story, Jo Pincushion holds her iPhone to the microphone to play recent recordings of her grandmother talking and singing, demonstrating the personality slowly being erased with time and dementia. We checked in with her on her own flashbacks to time spent with her grandmother and how she is choosing to remember her.

Give us a flashback. Tell us about one of your favorite memories of your grandmother when you and she were younger.

It’s hard to pinpoint one significant memory of my grandmother, because everything she ever did was for her family. Whether it was treating all the cousins to their annual Wildwood boardwalk amusement trip every summer or babysitting during an emergency — she was there.

I hold onto certain memories when taking care of her becomes extremely difficult. When I was four, my brother went into the hospital because there was a peanut stuck in his lung. I remember my grandmother lying with me in my parents’ master bedroom reassuring me that my little brother would be OK and everyone would be home in the morning. It’s moments like these I remember — because her constant love and attention for all of us has raised us into the well-adjusted adults we are today. And now she needs us. It’s our turn to take care of her, because she was always there to take care of us.

During your story, you take out an iPhone to play some recordings of your grandmother. It must be wonderful and heartbreaking to have those mementos. What sort of things are you recording and why?

Having access to this technology certainly makes sharing Mom Mom woes with our other family members easier. Whenever she falls, I receive a photo of her latest injury from my mother. Sometimes my mother tries to get my grandmother to calm down by giving me a call on my cell and having me talk to her. It’s nice being so interconnected.

My grandmother is still very funny, and whenever I watch her, I snapchat a little video to send to my sister-in-law, who loves everything Mom Mom does. When she’s in a good mood or singing, I’ll record a little video for my own collection. Before the dementia really took hold, I would even record phone conversations with her so I could always hear her say “I miss you” or “I love you.”

I’m not stockpiling on last-minute Mom Mom videos or photos — I don’t want to remember her as the sad and scared woman she is now. I’d rather see a younger (and more tan) photo of my grandmother once she’s gone.

Tell us about some of her favorite songs.

Mom Mom was a big fan of Sinatra, and “Strangers in the Night” was her wedding song. This is also one of the songs she’s begun to sing at the top of her lungs recently.

She’s also a fan of Broadway, a hobby that she introduced to me at a very young age. Her favorite show is “My Fair Lady,” and as you saw in the video she loves to sing “I Could Have Danced All Night.”

What would you say is the most important thing your grandmother taught you?

She taught me how to sing, which I don’t do much these days. So sad.

She also taught me to stay active. My grandmother was always very active, independent and social. Stay active, and you’ll stay happy!

What about your grandmother or your family in general would you say gives you the most pride?

Family first.

By example, my grandmother led our family into the strong unit that you see today. She knew that when family stuck together and helped each other, then they could overcome any obstacle in their lives. That’s why we always say ‘family first,’ because if you have your family on your side through this crazy ride called life, it just might get a little easier.

—

Jo Pincushion (Jo Anna Van Thuyne), is a writer, producer and personality in the Philadelphia area.