The Sandwich Generation

Caring for kids and parents at the same time

As I watched my brother wheel her out to my car, temporarily parked in the airport arrivals pickup line, I instantly felt shocked. 

This wasn’t the mother who’d gone off to Arizona a mere seven months ago. She was frail; her clothes hung off her the way my grown-up clothes cascade off my eight-year-old. Her hair, which she’d long colored a deep shade of red and had styled the same way since I was small, was a ratty, gray mess. Her nails, which she’d always kept perfectly rounded and manicured, were unpolished and ragged.

Even though I knew she’d declined, seeing her this way was jarring. And heartbreaking. 

If she had her wits about her, I knew she’d be mortified.

I first noticed the spottiness of her memory back in 2019 when she was diagnosed with a blood cancer disease called Myelodysplastic Syndrome (MDS). She’d had labs drawn and they’d come back wonky – her white blood cell count was too low – and we needed to make an appointment with a hematologist. 

During that time, I’d been hyper-focused on all the responsibilities and joys that come along with raising 3 small children (twins and a singleton). Though she lived alone and I often worried about that – my dad died when I was just 27 – I assumed my mom had everything regarding her health and medical care under control. But in 2019 when I went into her medical chart to reach out to her primary care physician for a referral, I couldn’t find one. When I asked her who she saw, she couldn’t remember; then she named a doctor I knew she hadn’t seen since I was a child. 

I decided to take control, the same way I do with my own children’s care. 

It was that day I became a member of the Sandwich Generation.

I remember vividly the day I locked myself into one of the private rooms at my coworking space and made phone calls to all the doctors my mother had seen over the last 5 years trying to determine which one was her primary. I utilized the wall-hanging whiteboard to draw a diagram – my mom in the middle with several outward spokes pointing to every doctor and medical facility she’d visited, similar to what you might see on a detective show.

It took me all day to sort it out. I promised her that either I or one of my four older siblings would accompany her to every doctor’s appointment going forward. This was to offer her support, yes, but also because I was beginning to realize she needed our ears and minds – she needed us to hear and record the important information each doctor was going to share. 

That evening, I was emotionally exhausted. I sat with my husband on our bed, and the tears began rolling until I was blinded by them. 

I was completely overwhelmed. 

Caregiving for my elderly mother and young children felt completely untenable.

How was I going to manage this – my mother’s impending needs and care – as well as my own children’s? My kids, then 7, 4, and 4, needed their mom. They were my top priority, but now… now my mom needed me too. 

Desperately. 

And I felt physically sick. How was I going to do this? 

“One foot in front of the other,” offered my husband as he held me close. “That’s all you can do. And you’re not alone in this. I’m here to support you and our family. Always. We can do this.” 

I’d always been grateful for him, but in that moment, my gratitude was tenfold. We always joked that together we were The Force, but on that night, I knew it was true. 

The very next week, my brother and I brought my mom to her first appointment with her new oncologist. 

“This type of blood cancer turns into acute myeloid leukemia,” said Dr. Warlick. “If we do nothing, we’re probably looking at three years of life left. Maybe less.” 

Our hearts sank. Three years? How was that even possible? She was so young – and I wasn’t ready to be parentless.

“And if we do something?” I asked. 

“Well, we can do an aggressive type of chemo,” she went on. “Your mom will have to come in a couple of times a week for her treatment, and we’ll follow her blood work closely to see if there are any changes. If she were younger and healthy, we’d look at a bone marrow transplant, but considering her age and the fact she’s been a lifelong smoker, she’s just not a candidate for that.” 

We chose to do the chemo and, after several months, she miraculously went into remission. Even her oncologist was surprised. “I don’t know how long this will last,” she said, “This type of cancer is terminal. It will come back. But until then, go enjoy life.”

But something happened while my siblings and I were taking my mom to all her labs and doctor’s appointments; we noticed something equally as life-threatening and terrifying as her MDS. She was often forgetful and confused. And not just a little bit, but very much so. 

Since my dad passed away in 2007, she’d been more reclusive than she ever was; she was also becoming exceptionally paranoid and wary of those around her. She spent so much time alone. 

I began to notice that she’d make up stories, which, to this day, I’m not sure if she knew were false or if she thought they were truly reality. But this was different. These new stories she was telling were far more outlandish and bizarre.

We also began to notice how she’d ask the same questions multiple times within a short conversation. She started calling me in the evenings confused, unsure what medications she was supposed to take and when, and what her plans were for the following day. And I was shocked by the mess I’d see when I’d visit her at home because she had always been a consummate neat freak.

Being disorganized, messy, and – gasp! – dirty was simply NOT in her DNA. I think perhaps this tipped me off more than anything. Yet I didn’t know how to bring it up to her. I knew if I accused her of being forgetful, she’d become defensive. But then, one day, the opportunity arose. 

We were in my car on our way home from one of her medical appointments when she said, “Marissa, I’m noticing that my mind isn’t working as well as it used to. I asked someone – a doctor friend of mine – at the golf club if I should be worried, and he said it’s normal, that all old people forget things now and then.” 

But I took this opportunity to discuss the subject without her becoming offended or angry at me for doing so. 

“Mom, it’s interesting you say that. Actually – I’ve been noticing it a little bit too. Hey – would you mind if I made an appointment for you with a ‘memory doctor’? Someone who can help us determine if this is normal aging, or maybe if it’s something more?” 

It was out of character for her, but since her cancer diagnosis, she’d been far more amenable to these types of requests from me. 

“Okay,” she agreed. “That sounds like a good idea.” 

When we first met her memory doctor, who was a geriatrician specializing in Alzheimer’s/Dementia, I was exceptionally nervous. I didn’t want to hear the news that I knew deep in my gut was true. She gave my mom a series of cognitive tests – one that was verbal, one in which she had to draw pictures and complete a written exam – followed by drawing blood for pertinent labs (the MRI came a few weeks later). 

At the end of the appointment, Dr. Smith explained to us as gently as she could that she thought my mom was in the early stages of Dementia. 

This was a gut punch. Even though I’d already known it was true – it didn’t lessen the blow of those words. Your mom is in the early stages of Dementia.

I kept a brave face and held my voice steady. I knew I needed to be strong for my mom. But on that drive home, I was a mess. Rambling on and on about things that didn’t matter, just trying to avoid the topic at hand – the one we both felt like the weight of 12 boulders. 

Dementia. 

I tried to hold it together that evening at home. I didn’t want to burden my children with my pain and panic – or let on how scared I was that perhaps one day this terrifying fate would befall me. To cope, I tried my best to focus my energy on them – playing games, drawing, reading books – but in the moments of silence and stillness, the tears pricked my eyes. 

Over the next several weeks, we completed the necessary tasks one must do when a parent or family member is diagnosed with dementia. We filled out the important paperwork – POA (power of attorney), advanced directives, and so on – and tried our best to plan for an unpredictable future. For now, she was OK living alone, driving, and enjoying her day-to-day activities, but I knew it was only a matter of time. 

I’m a type-A planner who likes to be in control, but there was no planning for or controlling this. And without the ability to plan and check things off a to-do list, my anxiety spiraled. 

As the months went on, my mom’s cancer remained in remission… but, as it does, her dementia worsened. We faced the hard truth – the truth that she didn’t want to accept. Driving was now unsafe – she’d been getting lost far more often – and spending the days on her own was equally as hazardous. We realized she needed a higher level of care.

My siblings and I could no longer be her sole caregivers.

She accepted this, which surprised me, but she refused to let her helper move in with her because she so deeply valued her privacy and space. We went along with this, even though I knew it was the wrong choice. But she was becoming unsteady on her feet and the clutter in her home was growing out of control and posed a fall hazard for her. Not to mention, a pack-a-day smoker, I constantly feared she’d burn the house down. 

My endless worry impacted my parenting. My brain was constantly churning with fears, thoughts, and tasks about my mom and my kids. I kept an ongoing to-do list with three columns: Kids, Mom, and Work. I always felt like I was dropping the ball somewhere: not able to make it to someone’s play at school; not able to take my mom to an important appointment; not able to complete a deadline for work; no energy left to connect with my husband, and so on, and so forth. I was breaking; pouring everything, all the time, from an empty cup. 

The empty cup well known to those in the sandwich generation.

Last April, while my mom was in Arizona for the winter, everything changed in an instant. 

It was an evening after her caregiver had left for the day. She was outside, likely having a cigarette, when she walked down toward the end of her driveway. She tripped on the driveway’s lip, fell hard to the ground… and broke her hip. 

Miraculously, a neighbor spotted her and ran to her side. The neighbor grabbed her cell phone, found my brother’s contact information, and called him to tell him what had happened. He called her caregiver, who called 911 when he arrived. At the hospital, she was admitted and prepped for surgery. 

I’ve often heard that a hip break for the elderly can be the kiss of death. My mom herself used to tell me this when I was small as she stressed the importance of drinking milk to strengthen my bones, but I didn’t realize just how severely she would decline after this incident. 

Between her immobility, the change to her environment and routine, the surgery, new medications, and the inability to smoke, my mom’s dementia increased tenfold. It was like she aged 10 years within one week. 

From the hospital, she was moved into a rehab facility to continue physical therapy and strengthen her hip – this caused her to decline even further. It was another change; another shift in routine, another unfamiliar location. 

My siblings and I knew we had to make a decision quickly. She was no longer safe to live alone with only daytime help. Either we were going to hire her 24/7 care, which is hard to find and quite expensive, or we had to move her into a memory care facility. 

With little time to figure it out, we frantically began researching and touring facilities. It was scary, stressful, and sad… but ultimately, memory care was the right thing for her. 

Yet, I could not shake the heavy guilt I felt at doing this. “She would hate this,” I kept saying to my family. “I know she would rather die than move into one of these facilities.” 

We all agreed – but honestly – we didn’t know what else to do. 

Those days were some of the hardest of my life. I was managing her care from afar, speaking to her physical therapists, physicians, and caregivers multiple times a day, touring assisted living homes, packing up her necessary items for her impending move, filling out all the paperwork required to move her into a facility, all while fielding angry calls from her about strangers holding her against her will and stealing her cigarettes. All of this while trying to parent my kids and keep myself from physically, mentally, and emotionally drowning. 

On one particularly rough May morning, I’d gotten to my daughter’s school just in time for her grade’s orchestra performance. I was so grateful for the respite, to sit there in the comfort of the plush auditorium chair next to friends, and do nothing other than revel in the sounds of these talented 4th grade performers. 

When it was over, after I’d congratulated my sweetheart and hugged her and my friends goodbye, I hopped on a Zoom call with my siblings from the car. We were discussing the details of my mom’s move – who would do what and when. We were butting up against a deadline; she was returning from Arizona in a few days, and we had to have everything ready to go. 

The plan was to have her room at the memory care facility completely ready and to move her in straight from picking her up at the airport. We weren’t going to tell her it was a memory care, but rather a rehab facility she’d live at until her hip improved. I hated every part of this entire situation – lying to her, moving her into memory care, everything. I felt like I was betraying her on the deepest level, and it completely broke my heart. 

All of a sudden, likely between the constant stress, lack of sleep, and total overwhelm, the emotional and physical magnitude of what we were discussing became too much to bear. I began crying hysterically. I could not stop. My patient siblings waited for me to calm down and breathe. Unlike me, their kids were older – they were empty nesters – and didn’t have the pressures of also caring for three little people at home. 

In addition, I was my mom’s only biological child – her “flesh and blood” as she often called me. She was their stepmom. Which, by the way, didn’t mean she loved them any differently or less. She raised them like they were her own, and they all cared for each other deeply. I just, I don’t know, felt this immense pain and guilt that I – not them, but I – was letting her down… letting my dad down, too.  

It was my second eldest brother and his wife who’d agreed to fly down to Arizona and bring her home. This was no easy feat – one I’ll be indebted to them for doing for the rest of my life. 

As I watched my brother, beads of sweat dripping down his forehead after the long, arduous day of traveling with someone who cannot physically travel or cognitively remember where she is or where she is going at any given moment, hoist her into the front seat when I picked them up at the airport, I realized how far gone she was. 

In that instant, my heart shattered into a million fragments. 

She was no longer the same mother who raised me. She was small, disheveled, confused, and broken. I realized our roles had reversed. I was the caregiver now, and she was one in need of tenderness and protection. I wasn’t sure how, but I was going to have to figure out how to manage this sandwich – caring for my children, while also caring for her. Four needy people. I wasn’t quite sure yet where care of myself, my marriage, or any of the other facets of my life, would fit in, but I knew it all had to be part of this hefty multilayered sandwich. 

And as I drove her to her new home, the memory care facility, I played her a Spotify mix I’d created for her when she was first diagnosed with dementia. It was a myriad of her favorite songs, stemming from her childhood to the present – from the Mills Brothers and Andrews Sisters to Billy Joel’s and Rihanna’s greatest hits. She’d always loved music, and I’d read that along with scents, music can help patients with dementia feel calm and spark memories. 

I saw her clapping her hand against her lap to the beat. She had a soft smile on her face as she bopped her head gently back and forth. I had a quick flashback to sitting in the passenger seat while she drove, windows down, the two of us belting out the lyrics to whatever our favorite song at that moment happened to be. 

She may not have been the same mother, but I took solace in knowing that some things would never change.

……….  

Fast forward a bit, last January we moved my mom out of that facility, about 8 months after moving her in. It simply wasn’t the right fit, and she wasn’t being cared for in the way we’d hooped. We searched for a new place and found a lovely home with fewer residents and more of a community feel. The transition went much smoother than I thought it would, and it’s clear we made the right decision.

Though her dementia is worsening, she is thriving. She’s socializing much more, enjoys the kind staff, is eating well, and generally seems happy. It’s the best-case scenario in an otherwise difficult situation. 

As for me, I’m doing my best to take it day by day, and learning how to better take care of myself, my family, and my mom while not constantly burning the candle at both ends. I don’t have this completely figured out – it’s a definite work-in-progress – but for others also wedged in the middle of this impossible generational sandwich, here’s what is helping me… perhaps it can help you too.

• Release the guilt. You’re doing the very best you can. Know that. When it comes to dementia, my mother doesn’t remember things from one moment to the next. So the only person who feels awful when I can’t visit as often as I want to is me. She’s just happy when I show up, for however long I’m able to be there. I was killing myself trying to get there several times a week and each weekend, but with young kids, my work, my marriage, and my own needs, it became emotionally and physically overwhelming.
  
• Prioritize. Yes, You can do many things, but you cannot do everything, and certainly not all at the same time. I decided that my kids and family had to come first. So on any given day, if both needed me, I made the choice to attend to my kids first, and then my mom. While this isn’t always possible, it’s what I strive for.
  
• Ask for help. During the tougher periods of moving my mom back home and into her memory care facility, and again moving her into her second memory care facility, I had to ask for help. My husband stepped up and helped a ton, and we had to enlist our babysitter too. If you have someone you can lean on during those tough moments – a neighbor, friend, partner, caregiver, family member – do it.
  
• Reserve the right to change your mind. If the type of care you initially choose for your loved one isn’t working — whether it’s living with you, in a memory care facility, a nursing home or an assisted living community, etc. — just know you can change course when you see fit. When we realized the place we’d moved my mom into wasn’t right for her, my siblings and I decided to research more places and find a better fit. Though the idea of moving her again seemed completely overwhelming, it went far better than we expected, and the outcome was positive. She’s much happier in her new home, and we are too.
  
• Self-care. It felt impossible to squeeze in time for myself, and often still does, but the things that helped me the most were going to therapy, journaling, being physically active each day, attempting to eat as healthy as possible (not an easy feat for me!), and sneaking in time with friends.

For those of you in a similar boat, you’re not alone. It isn’t easy. It’s stressful, emotional, guilt-inducing, and so much more. But please give yourself as much grace, love, and compassion as possible. 

I’m sending all my hugs and love to you as we navigate life in the sandwich generation. While it’s been a difficult road, I’m also incredibly grateful that I can be here for her in her time of need, just like she’s always been for me.  

Marissa Bader is now a writer and author of children’s books, including The Only Me, Stella’s Brave Voice and Petunia the Perfectionist, which debuts in August 2024. Connect with her on Instagram.

Stella’s Brave Voice: Twin sisters, Stella and Paige are different in a lot of ways – especially when it comes to how much they like to talk. Stella’s always been okay with being the quiet one . . . until now. Suddenly, Stella has something to say. But can she find a way to make her own voice heard over Paige’s? And will learning to use her own brave voice hurt Paige’s feelings—and their special relationship?