What exactly is a caregiver?
We assume that parent/caregiver is interchangeable. One of the same. It’s not.
A caregiver, by definition, is a family member or paid helper who REGULARLY looks after a child or a person who is sick, elderly, or disabled. All parents serve as a caregiver from time to time. But that is not the same as the “primary caregiver” role so many of us took on the moment we became a mom or dad.
Why does this matter?
Acknowledging how different and challenging the parent/caregiver role is important because it can consume us without us realizing it. We love our children so deeply that the lengths we go to ensure their comfort become our new normal. But our norm is not the norm. That’s why recognizing and honoring caregivers is so important. We love our children unconditionally and will do anything for them, part of that needs to be loving ourselves too.
How is parenting different from caregiving?
Parents need babysitters. Caregivers need respite.
Parents take their kids to well visits and sick visits a couple times a year. Caregivers administer treatments and carry binders full of medical records to quarterly, monthly, sometimes weekly appointments.
Parents listen to doctors. Caregivers collaborate with doctors. Caregivers get second, third, even fourth opinions. Caregivers are often the most important part of the medical team.
Parents make dinner. Caregivers feed their children, by mouth, by tube, whatever is needed.
Parents tell their kids to do their homework while they prep dinner. Caregivers spend an hour helping a child do what should be 10 minutes of homework, which they’ve also helped modify. Dinner is a daily crapshoot.
Parents go to parent teacher conferences. Caregivers go to those conferences and also IEP meetings, behavior plan meetings, care plan meetings, person-centered planning meetings, Medicaid eligibility meetings. So many meetings.
Parents take their kids to soccer practice and drink coffee on the sidelines. Caregivers search for a sport or program that is suitable, fill out piles of paperwork, meet with the people running the program, go over accommodations needed, and are on high alert monitoring their loved one, often jumping in to help.
Parents sign their kids up for after school clubs. Caregivers contact clubs to see if supports are available. They usually aren’t. So they request assistance, offer to help change the system, or offer support themselves. Caregivers sometimes give up or don’t bother asking, because it’s not worth the effort.
Parenting is planning a family vacation to somewhere fun. Caregiving is wondering how you can make endless visits to specialists feel like a vacation because you have no money or leave left for anything else. Caregiving is forgetting that dream vacation and finding something that is doable because of medical conditions that make travel difficult.
Parents park in the most convenient space available for their family’s needs. Caregivers arrive to events early hoping to secure a disabled parking spot. Those spots are often taken by parents who don’t need them but thought “5 minutes don’t matter.” So caregivers navigate dangerous parking lots pushing a wheelchair or monitoring a child who collapses and runs off with no safety awareness of cars.
Parents are sleep deprived for the first few months and years of their child’s life. Caregivers are sleep deprived indefinitely.
Parents carry a diaper bag and later some extra clothes and eventually just their own stuff again. Caregivers bags only get bigger in every sense. Bigger diapers, bigger clothes. And the emotional baggage we carry but keep buried down below gets heavier, as we see our loved one’s peers pass them by. As the “little kid cute” fades, stares become less kind and more prominent. It stings. But we barely have time to process it because we must keep on caregiving.
Parents’ roles change when their children become adults. They will always be a parent, but their “work” is done. Caregivers will always be caregivers. And their role becomes more complicated as time goes on.
How do we care for a caregiver?
Acknowledge it is hard. We internalize so much because we love our children. There is no shame in saying it can be hard. There is a reason we’re always tired.
Lean on each other for support. Validation is everything. Knowing you’re not alone in your feelings makes a big difference.
Advocate for change. Supports are available but not accessible for so many of us. Wages for hired caregivers are so low that it’s difficult to find and retain quality respite providers. There are people pushing for change. Find them and join the movement. It can be as simple as following a group on social media and sending an email when issues arise.
Be kind. To your family. To yourself. When everything feels like too much, toss out those arbitrary rules we make. Turn on a screen. Order in. Ask for help. Step outside and breath for a moment.
Always remember – you are not alone.
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Thank you so much for writing this post. As a carer myself it so nice to be able to read an article that validates what I do!
Reblogged this on Champ1Champion and commented:
This is a very good article!
I’m currently under 40 yrs old and now the caregiver to my disabled spouse- and have two of three kids with mental struggles that are often more in the caregiver category than the parent category. I’m often just at wits end. The biggest need i have is to be seen as someone who is working hard and overwhelmed but not incompetent. At work and other places i get pegged as being temporarily just overwhelmed… and they say dumb things like “don’t worry” or “it will get better- I just know it.” Long term disability and caregiving is not going away and I can’t stop worrying. I also don’t know that it will get better ever. I wish this were not so lonely. Holidays are terrible. Every one. I can’t keep up and I’m just too exhausted to enjoy the cheer everyone else seems to be able to make time and energy for.
The holidays can be so hard. I find it especially difficult when family or friends say they understand yet make it clear by their words and actions that they don’t.
It is lonely. But we are not alone.
You are so right, we have no idea if it will get better. Often times one thing gets better, then 2 new things crop up.
sending strength. it is tough
Oh gosh yes. It is lonely, I know family mean well, but they don’t get it. I have 3 kids 9 yr old, 6 yr old and a 10 month old with a multitude of complications. I shared this to my personal page and got responses like “be strong, it will get better, your a great mother etc”, I just wanted people to understand a little about my daily life, and not responses that I already know…she may never walk, she has a low life expectancy…it is lonely.
“The biggest need i have is to be seen as someone who is working hard and overwhelmed but not incompetent…” I can so relate! me, too. Much love to you!
As a parent-carer to two children with ASD, this is one of the best most accurate description of the differences I have ever read.
Brought a tear to my eye it’s so on point.
I can share this with the support group I run as I know many of them would like to read this too, and share to explain to others the differences in our roles.
Thank you 🙏
Share as much and as often as you’d like. It means so much to know it has resonated with others.
Wow. So perfectly worded. Thank you for writing this and putting so many of our thoughts into words.
I know this article is old, but the sentiments are certainly as true today as the day you wrote them. When some people think about kids with autism and the caregiving they require, they tend to feel empathy for parents but offer platitudes to pacify them. Statements like, “They’ll grow out of it” or “It will get better” may be wishful thinking on their part, but can come across as dismissive of the reality we face as parents of children with disabilities. My cousin has a child with severe cerebral palsy, and we often talk about this.
Another issue we discuss is that sometimes family members want to help, but the help they’re offering doesn’t really help. If people truly want to help, they can begin by learning even a little about the disability and asking sincerely, “How can I help?” It may be as simple as watching the child while we get uninterrupted sleep for a few hours or take a long, relaxing bath.