I remember coming home from school soon after I turned 12 years old, and finding my mom lying in bed, covered in sweat, writhing in her sleep, and moaning.
The room was dark and I couldn’t wake her up. I placed the back of my hand on her forehead, like she did when I didn’t feel good. She was so hot… My best friend Dena used to get “bus headaches” and after school her mom would let us lay on her bed, in the darkened room where we’d watch Star Wars and eat coffee ice cream, which might make Dena feel better. Her mom would fill a bowl with ice cubes and dip a cold wash cloth in the bowl, and put it on Dena’s head. Dena would then keep doing it, over and over again, until the headache went away or the ice melted. And it worked! We always ended up going outside, running around, getting in trouble or just playing with our Barbie dolls.
So on that day, I tried it too. I tried to make my mom better by getting a bowl of ice, a cold wet cloth, sitting on the edge of the bed, and putting it on her head, over and over again. I tried shaking her and begging her to wake-up, but she just moaned and groaned and rolled over. I tried making dinner, and doing homework and taking care of the dog, and getting my sister ready for bed. And I tried not to call my dad. I tried telling her to go the doctor (who would have told her she was riddled with cancer), and I tried threatening her when she said no. I tried yelling at her and fighting with her until I broke her, and made her cry. I tried praying and I tried promising that I’d be a good girl. And I tried so hard to distract my little sister. I tried making up stories and telling white-lies to keep her from seeing the horror of that room on the really bad days. I tried making my mommy better so she wouldn’t die and wouldn’t leave us all alone. But I was just a little girl, only 12 years old, and despite everything I tried, she died, and I failed.
The strength I can pull from the depth of my soul when I need it most, is in part because of the losses I experienced, and the fact I was a child caregiver.
There are a lot of things I don’t remember about that time. Things doctors, friends and family have told me I have buried so deep that even at the age of 50-something, are best left alone. I’ve gotten pretty good over the years at nodding my head in agreement, and looking like I’m really listening when they say things like “you didn’t fail” or “it wasn’t your fault.” But sometimes, despite my mind’s best efforts to keep the sad, scary, horribly painful images hidden, the memories sneak out. They peek through in my dreams or at the sound of an old song. Sometimes it’s a smell, or a picture. It could be a TV show, or someone’s laughter, or a child, that triggers something… that I just can’t grasp fast enough, and then it’s gone; blessedly forgotten, once again.
There is no doubt that the trajectory of my life was forever changed the day I came home from school and found my mother lying semi-comatose in her bed. On that day, when I stepped bravely into the role of a child caregiver, I lost my innocence, and forever lost what remained of my childhood.
In so many ways after her death I continued to be a child caregiver to my father and to my little sister. I’ve now been a caregiver my entire life, ironically, as a business woman and entrepreneur, but also as a wife, a mother, and a friend. Being a child caregiver had a colossal effect on my life, both in terms of what I lost, and in terms of what I gained. I believe my ability to persevere in the face of adversity, and the strength I can pull from the depth of my soul when I need it most, is in part because of the losses I experienced, and the fact I was a child caregiver.
According to the American Association of Caregiving Youth, there are an estimated 1.3 million caregiving children in the United States. Of these, 38% provide care for a grandparent and 34% for a parent. Like me, many of these children don’t get to enjoy 18 full years of childhood. They have to become responsible adults well before their bodies and minds grow into maturity.
And then there are the others: the 250,000 children and young adults between the ages of 8 and 18 who are child caregivers to those with Alzheimer’s disease or dementia. And although I didn’t lose my mother to Alzheimer’s, I have witnessed the incredible amount of physical and emotional strength it takes to care for someone suffering from it. I can’t begin to imagine how difficult it must be for these young kids to rise to the challenge and care for someone they love, while watching them lose their memories and their mind to this debilitating disease.
Sadly, this is just the beginning of what lies ahead for so many children. The Alzheimer’s tsunami shows no sign of slowing down, and unless we find a way to stop it, hundreds of thousands of new caregivers, child caregivers, will be giving up their youth. They will be growing up far too fast, in a world that is far too cruel, as they try to help someone they are far too ill-equipped to care for. The burdens that will inevitably fall on the shoulders of these precious children are burdens far too big for shoulders that are still far too small to have to bear them.
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