The woman in this photo is my almost 78 year old mother, who has been my primary caregiver since I first became disabled in 1998. That is 25 years of caregiving for her adult daughter. She is the often invisible and unseen force behind my survival, and beyond that, my ability to thrive.
We are bonded by a complicated combination of trauma, love, necessity, isolation and obligation. We love one another fiercely; we are best friends; we are mother and daughter. We are, in so very many ways, lucky. Yet, by focusing only on how 'lucky' we are to have one another, we ignore some important truths about the burdens of caregiving, the toll of caregiving and the anxiety of what one will do when their caregiver can no longer care for them, and may even be the one in need. We ignore the lack of a safety net for chronically ill and disabled people.
Last week was National Caregiver's Day, and I gave a lot of thought to what I wanted to say now about what it means to rely on a parent, especially an elderly one, for caregiving. It's a topic I've put off writing for so long because of the deep anxiety it causes me to think about how I can not only survive, but thrive, without my mom.
Part of my reason for starting this blog was to shed more light on the intimacies of living with chronic illness and disability, because even for some of those closest to us, there is little understanding of what it means for my mom to be my caregiver. So let's take a deep dive.
Why Do I Need a Caregiver? What Does My Mom Do for Me?
Over the 25 years that I have been sick, I have had various levels of functioning, but have never reached more than 60% on a wellness scale. At my worst, I was bedridden. I spent many years homebound. While I am able to do my Activities of Daily Living (the very basics--showering, toileting, eating, dressing and grooming), I am not able to do most of my Instrumental Activities of Daily Living such as laundry, grocery shopping, cooking, cleaning, running a lot of errands. I am, thankfully, able to manage my own medical care and finances.
That's a very basic, sterile look at the tasks my mom does daily. But there is so much more to what goes into making every day run smoothly for me (and our two pups). My care is so much more than IDLs.
The Emotional Side
Because my mom and I live together and snowbird together (I go where my caregiver goes!), there is no person who knows more intimately what it is like to live this chronic illness experience. She is the one who is there for medical appointments, she is the one driving me long distances for difficult tests or for PT. She is the one who is there when doctors gaslight me, when I'm sick after a procedure. And hardest of all, she is the one who grieves with me as I process the losses over the years.
The Financial Side
I think it can be confusing to people as to why I still live with my mom. For a year, I lived with a close friend in an apartment, and it was amazing. But, it wasn't financially sustainable, and I still relied on my friend and my mom to do most tasks for me. For families, disability is financially devastating--and we are fortunate to be a family that has not been bankrupted by disability. My mom retired early because the care I required was too intense for her to continue working at that time. Retiring early meant sacrificing the financial security she may have otherwise had.
For disabled people like me, we receive about $900 a month in payments. I'm not going to go into that now, but let's just say: where would someone like me live on my own?
The Invisible Caregiver
My mom is stoic, stubborn and strong as heck. She's 100% a product of her parents belief that life is just plain hard. She just does what she has to do. Day in and day out. With no breaks. I see someone who is tired, weary, exhausted and increasingly struggling to keep up with the tasks of caring for me. I see someone who has sacrificed herself and her own life out of a combination of necessity and choice. I see someone who has lost friends because they don't understand and finds it difficult to find support from people who might understand.
Being a caregiver to an adult disabled daughter is a profoundly isolating experience. It is isolating to be chronically ill as well, but there is an unacknowledged, under appreciated and undervalued force of caregivers, mostly women, picking up the slack for a society that literally leaves them with no other choice.
Why Don't We Have Help? Does Medicaid Cover Help?
I'll keep my soapbox short today, but let's just say this: there is no safety net for people like me. If we want to live in our own homes, we have to be lucky enough to have a superhero like my mom. Because I can do my ADLs, I am not eligible for any help. Any help we would have would be out of pocket.
Where Do We Go From Here: My Greatest Fear
My greatest fear, and the one that I don't even want to write, is losing my mom. Which is inevitable, of course. I also worry how I will care for her when she needs it. Of course, our whole family has worked to plan for the inevitable loss of my parents, but there is only so much we can plan for--we don't know what the future holds for any of us. We've done our due diligence, and from there, we do our best every day. That includes my dad and Abbie.
But even if we have a way for me to find care after my parents are gone, what will it look like? No one, and I mean no one, can ever 'get it' like my mom. No one will carry the knowledge of the past, know the ins and outs of my daily life, be there for every up and down, be there to take me to the beach for two months, to make sure I can have my dogs, to be there when I want to run errands, to host my friends, to have Jewish celebrations with guests, to take me to a park when I'm in the mood for a StRoll, know just what to cook for me or how to make the best chicken soup.
The intimacy of the caregiver relationship with a mom and daughter is irreplaceable and ireplicable. Yes, other people can do laundry and cook and clean, but they aren't there for all of the moments in between. There is also the implicit understanding my mom has of my needs--she can anticipate them and she can provide for them. I do not have to spend energy constantly directing my care or dealing with a rotating crew of caregivers.
On this year's National Caregiver Day, the weight of my mom's aging, the weight of what she has lost and the weight of the time I have left with her sat heavy. We have cherished the time we have together--we know that we have grown in a relationship that most mothers and daughters aren't able to because of distance, marriage, children, etc. We love being together (most of the time :)). My mom is not someone who complains about caring for me--she says: Once a mom, always a mom. But, I see the weight that a quarter of a century of caregiving has taken on her physically, emotionally and financially.
Yes, we are very lucky. But, disabled people shouldn't have to rely on luck of the draw to have the financial, emotional and physical support they need. Disability shouldn't mean that my Dad is awake at night worrying about my future or that my mom gives up her own dreams to care for me. My parents have been my safety net. But we sure could use a safety net that doesn't leave disabled people with no other options.
To my mom: Thank you for being the reason for my survival and my ability to thrive. I see you. I see the worry, the emotional and physical fatigue, the endless daily tasks. I see the sacrifices on every level. I wish every day that I could give you a break. You are loved beyond measure.
To my readers, I hope this post sheds some light on the impossible situations that disability places us in; makes you question how disabled people live without safety nets and what you think our society needs to do instead; how terrifying it is to think about living without my mom; and lastly, helps you to see what it means to be a caregiver like my mom.