Caregivers of children with special needs aren’t supposed to dread outliving them. But as we age, with no safety net and no retirement, the unthinkable starts to feel rational.
We aren’t allowed to complain.
We aren’t allowed to get old.
We aren’t allowed to retire.
And we certainly aren’t allowed to die.
I don’t know one parent/caregiver of a child with special needs who hasn’t lost sleep, dreading what will happen to their child when they’re no longer able to care for them. God forbid we die before them.
It goes against nature, this fleeting, almost taboo wish to outlive our children.
Recently, I told a friend I sometimes hope my adult child and I die together. This sentiment was met with scorn.
My daughter has autism. She’s the sweetest person, and I don’t have faith that the world will treat her kindly when I’m no longer here to advocate for her. She can pass as neurotypical, until she doesn’t. Her anxiety is debilitating. She struggles with employment, despite caring more and trying harder than anyone I know. At 26, she’s doing incredibly well compared to where we started, but she still needs a tremendous amount of advocacy—both practical and emotional—and she also needs our help financially to survive.
The “friend” I mentioned above, the one I confided in? I’d been an ear for her through two divorces. I had seen her through an additional abusive relationship. I listened as she spoke of bill collectors harassing her as she went through bankruptcy. I was there throughout her triumphant cancer battle. For decades, in countless conversations, I was the sounding board for complaints about the disrespectful way her neurotypical daughter treats her.
But when I shared that I sometimes hope my child and I die together, she replied with condemnation, “That whole death thing is a little heavy,” as if I’d placed a steaming pile of manure in her hands.
Yes, it is heavy. I’ve carried it for decades. So sorry to bother you with it.
The Price of Being the Safety Net
I had to give up my nursing career when my daughter was small. There was a period when she screamed constantly, for years. She got kicked out of preschool due to meltdowns. There was no one to leave her with.
My husband worked two jobs, sometimes three, to pay for therapies and treatments and special schools. I’d have had to work twice the hours to make the same amount he did. So, I became the full-time caregiver by default.
I put myself through college. I’d looked forward to making money and being self-sufficient. Suddenly, I found myself in the kitchen making every morsel of food from scratch for my child’s special dietary needs. I felt like I’d been flung back into the ‘50s. Not making any significant money all these years has brought a sense of shame. What kind of feminist allows her husband to support her 100% financially? One whose house was on fire. We did what we had to do.
I’ve never been paid for the endless work of caring for and advocating for my child. No money has been going into Social Security for me. No fat IRA is waiting for me when I retire. There will be no retirement, anyway.
According to the Teachers Insurance and Annuity Association (TIAA), “The outsized economic effect of family caregiving on women is a societal inequity reinforced by socialization.” Caregiving expenses, reduced work hours or leaving jobs entirely, on top of the already well-established gender pay gap diminish female caregivers’ ability to save for the future. This puts us in a very precarious position as we age.
Lest you think I resent my child, I do not. She’s the kindest, most loving person, and I wouldn’t trade her for any other daughter in the world. I’m not jealous of your neurotypical children’s successes. I’ve lived long enough to know the thrill of most accomplishments is fleeting, and climbing ambitious ladders doesn’t bring lasting happiness. I have a daughter who lives and breathes pure, unconditional love. She’s my wingwoman, always down for anything. She thinks nothing of holding my hand or dancing with me in public. We have our silly voices and secret language. Any song I randomly sing? She comes in with perfect harmonies. I’ve felt our cosmic connection since dreaming of her years before she arrived. Soulmates? Yes, I believe so. She isn’t the problem.
A Crisis We’re Ignoring
In 2014, a mother in Michigan attempted to kill herself and her teenage autistic daughter via carbon monoxide poisoning. The child was physically aggressive and put her mother in the hospital repeatedly. The mother had tried hard to get her the services she needed. The system failed them. She feared for the safety of her other children and saw no end in sight. She was desperate and out of hope. The pair survived, and the mother later pleaded guilty to first-degree child abuse. She was sentenced to 10 to 22 years in prison and was paroled after about a decade. Many people cheered her jail sentence, but where was the help for this caregiver before she reached her breaking point?
Like me, my friend Kim had to give up her career long ago. She has three adult daughters with profound autism. Each month, for each daughter, she has to hand-wash the expensive “period panties” they require, then soak them in a vinegar solution before rinsing and hanging them to dry. Her husband tapped out years ago and is off enjoying life with another woman. Kim usually gets two nights of respite, three times a year. Recently, one of her respite weekends got canceled because the group home that would have provided care for her daughters was at capacity.
Many parents of those with special needs qualify for regular respite hours but can’t find trained caregivers, so those hours go unused.
According to the Centers for Disease Control and Prevention (CDC), when my daughter was born in 2000, the autism rate was one in 150. Now, autism affects one in 31 children nationwide. Politicians shrug their shoulders and twiddle their thumbs as exhausted parents describe suffering PTSD-like symptoms, except there is no “post.” The traumatic stress is chronic and ongoing with no end in sight.
Caregivers’ backs are breaking as our love for our children is exploited by a society that expects us to continue this unpaid labor forever, but we are getting older. We will die one day.
If you know a caregiver, don’t look away. Text. Call. Ask what happens when they can’t do this anymore, then help them demand better solutions.
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If you’re a caregiver in crisis or struggling to cope, you’re not alone and support is available. The 988 Suicide and Crisis Lifeline offers free, confidential support 24/7—call or text 988. For caregiver-specific support, the Caregiver Action Network Help Desk (1-855-227-3640) connects family caregivers with resources and someone to talk to.
