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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