Sandwiched: Balancing Aging Parents and Everyone Else on Your Speed Dial

A Special Needs Child

Caring for a special needs child can often feel like living in The Twilight Zone. My daughter Erin, 18, who has an autism spectrum disorder, has conditioned me to expect the unexpected every day.  No phone call can surprise — and maybe in an effort of self preservation, I try to rationalize and hang on to any glimmer of the good or typical. “Erin disrobed twice today.” (But it was in the bathroom.) “Erin flipped a desk. There was no antecedent.” (Must have an ear infection.) “Erin pinched a classmate.  He was making loud noises.” (Clearly that’s annoying.)  Maybe it’s just a coping mechanism but it works.

When my father was diagnosed with an aggressive form of dementia called Lewy Body Disease I entered a new dimension of The Twilight Zone and gained new perspective and appreciation for this approach.  Nothing made sense. Everything made sense.

As I watched and tried to help my mother deal with a reality that was swiftly slipping away I felt like someone had held up a mirror to my life with Erin. Initially my mom was reluctant to acknowledge that there was anything wrong. “Dad has been seeing people who are not there, but I think it’s because he’s depressed and misses having the kids around.”  As the disease progressed and it became apparent there was a lot more to this ‘depression,’ I asked if we could find someone to help.  I don’t want anyone in the house. Everything is fine.  So I braced for the calls from this next dimension, where oddly everything was always fine and somehow made sense.

“Oh you heard that? Yes, Dad got lost for a little while but the police found him and he’s fine.”  

“I don’t know how he slipped off the chair but I couldn’t get him back up so I got him a pillow and let him sleep there for a while. He’s fine.”

As much as it made me crazy and I wanted to intervene, I well knew what she was doing. In an effort not to be swallowed by the mind and spirit numbing enormity of the situation, my mom hyper focused on the small positives and moments of grace.  This is how many caregivers survive. I guess the biggest challenge for those who love them is to understand and to accept that for better or worse, it’s all fine. 

Eileen Flood O'Connor

Eileen Flood O’Connor is a writer and mother of four, the oldest of whom has an autism spectrum disorder. She writes about the challenges and joys of life with a special needs child, as well as issues facing parents and families today. Her work has appeared in The Week, The Huffington Post, The Mighty, Grown and Flown and local print publications.

A Young Daughter

Have you ever found yourself waiting for the subway, and you wait and wait and wait, and meanwhile the platform fills up and the tension builds, and then finally when a train arrives, it’s pandemonium? Well, that’s my life, if you imagine people instead of subway cars.

I’m not talking about people literally rolling along on rails; I’m referring to a skewed cadence of sorts — what happens when two successive generations delay having kids, and then everything hits at the same time, on both ends of the spectrum. Literally at both ends, as in when you find yourself on diaper duty for not one person but two, one of whom once controlled your allowance and gave you time-outs when you were bad.

A little backstory: My parents are both in their mid-80s, and I have a five-year-old. My mom was on the cusp of 38 when she had me, her only child. I was 41 when I had my daughter. Into the mix add a well-meaning but old-fashioned and domestically clueless father, and voila! The perfect recipe for the ultimate caregiver shit sandwich.

I could blame my father, academic and liberally far-sighted, who spent more nights than not at the lab and so was not thinking of marriage or children till his 30s. Or I could blame my free-spirited mother, who loved to travel unencumbered.

But you know? I don’t really blame them for having me so late in life. It’s not really their fault.

You know what I blame? I blame Los Angeles.

Mom and Dad met in Berkeley in the ’60s and dated for a good while, but then dad got into a PhD program at UCLA. But LA was not a phenotype that mom’s brain recognized, so they split up. Mom stayed in Berkeley and dated some 6 foot 7 inch megalith named Angus. Dad moved to Venice Beach and finished his dissertation, and then finally, post-doctorate, they reconnected, moved to NYC and got married.

All was fine for a good while. Then two summers ago, I found myself in a taxi, heading towards Beth Israel hospital, my mom and my three-year-old with me in the back seat. My dad had some kind of mystery infection and had collapsed at home. My mom has dementia and didn’t understand what was wrong. I was upstate when I got the call from a neighbor: Your dad is sick and is heading to the hospital — can you come right away?

We jumped in the car and hightailed it to the city. My dad was in the hospital for a week, and during that time I was responsible for both mom and toddler. Getting them both up, washed, fed, toileted, and out the door to visit dad at the hospital was an exercise in something beyond patience. That day in the cab, when we rolled up to Beth Israel, I opened the door and my daughter bolted out the door and into First Avenue traffic, while my frail and demented mother clung to the side of the cab. I was suddenly facing a Sophie’s Choice kind of dilemma: Do I save the child or the parent?

Adrienne Day

Adrienne Day is a writer, editor and journalist based in NYC.

A New Relationship

When my mom went into hospice care, she was 89. My dad had died two months before, and I had met someone and was in a new relationship. It wasn't easy.

My parents were still living in the house where I grew up when they started showing signs they couldn’t take care of themselves. I was the last to admit it. Our house was too small for an aide. We tried it, but two women can’t run one home, and the stairs were a challenge — it became problematic. 

They moved to an assisted living facility in 2016 — and you know what? They’re really just franchises like a McDonald’s, but what are you going to do? You need a safe place for your family, and management literally banks on that. They know so many people won't visit because it's too painful. Assisted living in our country is really a ‘queen of the pigs’ situation, where even the ‘best’ ones are not good, and the worst are just horrible. 

But the workers? The people on the ground, directly affecting my mother’s care, were angels and loved her, and it was beautiful to watch, especially considering the money they are paid.

I’m someone who grew up frugal. My parents are frugal. And there’s no two-for-one discount in assisted living. I never was told about the annual increases, either, and they add up.

But I made peace with it. I realized that this is the price of love.

I worried I'd have to pay a price for my other love though. In a new relationship as a single caregiver, I thought, why would she sign up for this? It’s a tough route. And when she saw it, she was shocked. Like, what do you mean you go to the hospital for every doctor’s visit? But that’s what I do.

So that was a challenge for building my own relationship, my own life. I mean, people like to go on vacations, right? Everyone wants to get away. But I needed to be within an hour. Not being able to get away, being always on call, that was tough on a new relationship. I am so glad she gave me time and patience.

My relationship with my parents was something my partner had never seen and didn’t understand. She wondered, how are you like that with them, why are you hugging, and mushy, and kissing? But every time I left, I never knew if it was going to be the last time. So, I just decided long ago that I was going to be mushy. That affection and display threw my partner. She was like, I don’t understand. I’ve never seen anyone like that with their parents.

But I just kinda brought the love, and it translated. I lost my parents, but won new love. Love survives.

Varick Boyd

Varick Boyd is an actor and voiceover artist living and working in New York City. Tweet your caregiving questions and stories to him @VarickBoyd.