A week or so ago I was having a conversation with a colleague where she mentioned that she’d found herself thinking that she knows how hard my role as caregiver for my mom is, because she has a toddler and then stopped herself, because she realized that the two experiences are nothing alike. I don’t think she even knows how much I appreciated that comment, because you know what? She is not only extremely compassionate and sensitive, but she’s right.
This idea of Alzheimer’s or dementia caregiving being akin to child rearing is something I hear come up again and again from well-meaning people, who think they understand the caregiving journey, because they’ve raised a child. Don’t get me wrong. Parenting is an immense and important job not to mention a HUGE responsibility. If I wore a hat, it would be off to anyone who takes on the job of parent and does it well.
Life is sacred and when you bring one into to the world, you’re darn right there are going to be challenges and a deep love is born with that baby that will stretch you beyond what you ever knew was possible. Parents, especially parents of toddlers and teenagers, are rockstars.
But, I am here to tell you that raising your child and caring for someone who is dying of a brain disease are NOTHING alike. For one, being a parent is a choice. Certainly, there are instances that should never happen where it isn’t, but most couples are not forced to bring a baby into the world.
While I will always take care of my mom and do so willingly, none of us who care for loved ones with dementia signed on for this disease or the disruption and immense sorrow it brings to the lives of everyone who is touched by it, not least of all the patient.
I know I did not cry tears of joy that day in the doctor’s office when the doctor announced that my mom suffered from severe cognitive decline and would eventually forget how to swallow and stop being able to toilet herself, nor did the news fill me with hope for the future as I sat there unsuccessfully trying not to cry at the same time I was trying to gauge my mom’s reaction and wrap my head around a diagnosis that she didn’t seem to understand. And I doubt all of my friends who walk with their spouses, partners, and parents through dementia (especially early onset forms — talk about a cruel disease!) experienced anything much different.
The first time my mom forgot who I was, it was like someone was twisting a knife in my gut. But can you even imagine living this with children in the house and having to explain to your child why Daddy doesn’t know who they are anymore? Or maybe you’d like to have to explain to them why Mommy is suddenly mean and aggressive or having hallucinations, because something in her brain is misfiring. If caring for a loved one with dementia were like raising a small child, you’d be talking about what they are learning, not what they are forgetting.
The truth is, dementia is a massive disruption to the life of the person with the disease and everyone who loves and cares for them. While not all of it is bad, nothing about my existence is the same as it was pre-FTD. I have had to rearrange my whole life, everything, to be able to care for my mom, who is in the mid-stages of her disease and cannot be left alone for reasons of safety and anxiety (both hers and mine!). And even if she does have dementia, she is an adult with a life and experiences that are to be honored.
While our communication does sometimes have to be adjusted to make sure we understand each other (especially these days where she is starting to show some of the linguistic effects of her illness and can’t always find the right word for things or regresses to German), she does not deserve to be treated like a child. She is a grown woman who has lived on two continents, survived a war, refugeeism, immigration to a foreign country, the loss of a baby, and the loss of a spouse. She is not a child. She is sick.
And that doesn’t even address the emotional and financial strain. I can’t tell you how many fellow caregivers I’ve met who are struggling just to get by, because they’ve had to give up careers and stable incomes to care for their loved ones. I can’t tell you how many people I’ve met who struggle with just getting services for their parents or spouses. Medicare and Medicaid are a joke.
Our system is broken and the hoops you have to jump through are exhausting, especially when you already have the already exhausting job of caring for someone who is declining and doesn’t understand what is happening to them and has to be reminded of and needs help with even the smallest things. And that’s before the disease even gets bad.
And here’s the thing. You care for your children while they develop and grow, knowing they will eventually spread their wings and fly, hopefully to beautiful experiences and places. For the dementia care partner, we are warriors in a battle we know are ultimately going to lose, but still caring for someone, who no matter what we do, is declining and losing capacity.
My mom is not a child. She is an adult with a devastating and heartbreaking illness that will eventually kill her. She is dying and she is doing so in front of me, little by little, day by day.
There’s no pretty way to say it. No matter what I do. No matter how well I take care of her, how many vitamins I give her, how many doctors we visit, how many happy experiences I try to create for her (that she probably won’t remember the next day), the reality is that she is going to die.
Yes, it is sacred work and even work that has taught me many things. It has taught me my strength, my capacity, and that life is fleeting and frail with no guarantees, so do the things you want to do NOW, because you my not get the chance later. And it most definitely has taught me who my real friends are. But it is also fraught with sorrow and not something I would wish on any other human being ever.
And underneath all of that, I am NOT the parent of a toddler. I am a death doula doing everything I can to make my mom’s last years as comfortable and joyful as I can, just as I know I will do all I can to make her passing as peaceful as I can when that inevitable day comes.