My mother almost died in October. The ordeal shook me to my core, in unexpected ways. 

I am one of those daughters that talks to their mom every single day, sometimes more. But I’ve also been mourning her for years. She has not been well for some time. The details are not for me to share.  Like so many things in life, it is complicated and nuanced. There have been stretches where it was hard to talk to her, but I’d call anyway; to check in but also to tell her I loved her, fearing it would be my last chance. I have been doing this for years. 

She knows this. She will read this. We have talked about this. She is a spectacular human being. (Love you mom!)

Author and her mother many moons ago.

What compelled me to write about this is that so much of what she has endured is what we live through every day. 

The “we” I refer to are the caregivers. 

My mother was a caregiver by trade. She is a retired nurse. She was a damn good one. She cared deeply for her patients. Much of her time was spent working in nursing homes and rehabilitation centers. She and I would visit some of her patients around the holidays if she was off, just to say hi. 

My mom also served as the caregiver to her parents and in-laws. As a child, I didn’t recognize the toll this likely took on her. Partly because she didn’t see it as a burden but also because children are inherently selfish. (This is clear to me now, having 3 little ones of my own.)

Her dad died when I was in grade school. It broke her heart, but she soldiered on. She was always there for us, no day off, no weekend away, no afternoon at the spa. She mothered us as she mourned an unexpected loss. 

My mother’s mother suffered from cancer on and off her entire adult life, a battle that started when my mom was a little girl. My mom commuted more than one hundred miles to and from our home in rural Ohio into Cleveland to take her to chemo and care for her. She missed some of her children’s milestones to take care of her mom. Never a complaint. Never a tear shed in front of us.

She looked after my dad’s parents as well. They lived nearby, so she would make them meals when they weren’t well. When her mother-in-law requested to go into a nursing home, she helped in the process. My grandmother was never particularly kind to my mom, but my mom showed her love as a daughter-in-law and as her nurse at that facility. 

My mom didn’t flinch when her father-in-law’s dementia made it impossible for him to live alone. He moved in with us immediately. She was never angry, even when his unattended cigarettes burned sinks, tables, and rugs; even when he got confused and lashed out, even when he insisted he saw little people in our yard. She and my dad cleaned up the broken glass and feces after a vivid dream left him disoriented in his bedroom. When safety became an issue at home, she helped secure his care at the nursing home where she worked. 

Not long after her in-laws died, her mother had cancer again. This time she didn’t want treatment. So, my mom took a leave of absence to be her own mother’s caregiver. My grandmother moved in, hospice put a hospital bed in the living room where the couch was. My mother became her mother’s full time caregiver. 24/7.  Helping her make funeral arrangements, sponge bathing her, comforting her as she waited the inevitable, eventually holding her while she died. 

Throughout my parents caring for their parents, my father had heart issues. A massive heart attack, a quadruple bypass. After their parents died, my dad’s health issues continued. A few more heart attacks, a cardiac arrest that put him on life support for a bit, but he pulled through. 

A couple of years after that, he had a massive stroke that required a life flight. My dad survived, but never walked again. My mother then became his full-time caregiver. And she was with him when he died in 2019, in a hospital bed in the same spot where my grandmother passed two decades before. 

While my mom did share with me how hard my father’s final years were, it was never because she didn’t want to care for him. In fact, she refused help. She wanted to be the one to do everything for him, even though it was too much for anyone. I believe her brush with death last month was partly a culmination of decades of stress that she still does not recognize. 

Her story is important because I see it in myself and so many of my friends that serve as parent/caregivers. Caregiving and parenting are not the same, just as being a loving partner or son or daughter or child is not the same as being a caregiver to the ones you.

So many of my friends, so many of the caregivers I know, just keep giving from empty cups. Self-care is this mythical unicorn in our lives. Getting through each day is an accomplishment. Recharging at night is impossible; whether it’s because of behaviors, medical needs, or stress-induced insomnia.

Every hour of our lives is consumed with doing for others. As parent/caregivers we have all the regular stuff and so much more. On a recent Monday I woke soaked in pee from the child sleeping next to me (at least one of my three children is always sleeping next to me). The usual parenting things began before the sun rose – laundry, lunches, getting the kids out the door. Then came the extras that we as caregivers brush off as nothing. After walking all the way to school, my oldest refused to go any further. He started running home. There was no stopping him. He wanted his bike. I escorted him home, and back to school. He was late; making me late for work. I was lucky to answer a couple of emails before the start of my son’s annual IEP meeting. It was slated for 45 minutes but took 2 hours. That pushed back my next meeting with my son’s caseworker, discussing all of his deficits yet again, to prove that he has a disability so he can get supports through Medicaid; supports that we can never fully access because the system is broken. When I come up for air I had to get the kids from school. No time for lunch. Behind at work. The IEP still isn’t finished. The caseworker meeting was just a prelude to a longer meeting in a couple of weeks. And the pee soaked bedding isn’t even close to done.

Almost every day I wonder out loud why I’m tired. What I should be asking is how do I keep going like this. 

Every space in our brains is consumed by worry, anxiety, and endless lists of the needs of those around us. 

It is relentless, it is taking a toll whether we realize it or not. And it will catch up with us.  

We shrug off our struggles as if they’re no big deal. New normal, we call it. I remember how that term resonated with me when my son was diagnosed with Down syndrome. But being his caregiver for more than a decade, I see our lives are far from normal. Society does not allow for it. It does not provide the supports, accommodations, or modifications that people with disabilities need to have an equitable, inclusive “normal” life. Calling it that is a disservice to my son, his siblings, and to my wellbeing as his caregiver. 

Our existence is a near constant uphill battle against the inequities stacked against our children. It is grueling, brutal, and exhausting – the physical, the mental, the emotional. All of it. 

We must quit pretending that our lives are like that of our friends, our siblings, or our peers. It is not. If we do not start taking care of ourselves, we will fall apart. 

We have to decide what that care looks like. Therapy is a great place to start. Take advantage of those virtual sessions while insurance companies still allow them. Find someone who understands the unique dynamics families like ours face. Sometimes it takes seeing more than one to find the right fit. A good therapist will listen. They will offer strategies for self-care. They might recommend medication. It is a safe place to talk about those unthinkable things that run through our minds. 

Proper care also means your own medical care. We spend so much time getting second, third, even fourth opinions for our children to find a doctor who will listen. We need to do the same for ourselves. See the dentist. Get your physical. Make an appointment for that ache or pain that refuses to go away. Get the funky mole checked out. Take a day to set up your appointments. And if you see a doctor who doesn’t take you seriously, find a new one. 

It’s not just about doctors though. We need to feed our souls. Whatever does that, do it. Find a moment every day – whether it’s getting outside, reading a book you actually like, watching something ridiculous, writing, baking – WHATEVER. Do something just for you. Stop waiting. Stop feeling guilty. Just do it. 

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