Dear Caregiver by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

There is a common phrase in our society that women do “thankless work.” Do we manage most of the thinking and planning around our households? Traditionally. Do we carry heavy burdens? Often. Are our good natures exploited to the benefit of capitalism’s bottom line? (You didn’t hear me say that…) Are we overworked, overtired, and sometimes just over it? Many of us are. 

Because caregiving comes naturally to many women, all women are seemingly expected to somehow step up and fill what tiny, miniscule little crevices of available time and energy we have to do the work of caregiving. We run our bodies ragged—we’re too tired to eat, or we’re chasing cheap energy through caffeine or sugar boosts. Men are not exempt from caregiving responsibilities or the side effects of being stretched thin, but study after study shows that women are predominantly carrying caregiving roles, without adequate support or proper consideration of the work we are doing. 

The thing about caregiving is that we don’t seek it out; it generally finds us, and often unexpectedly. Caregiving finds us when a loved one experiences a trauma. Caregiving finds us as we age, or as we come face to face with an unanticipated disability. Caregiving finds us in a loved one’s last will and testament. Caregiving comes by way of our consciences and our inability to look away or to do less. 

We just dug into the first chapters of Amy Julia Becker’s To Be Made Well: An Invitation to Wholeness, Healing, and Hope at our church Moms Group, which addressed noticing the physical manifestations of emotional pain. Maybe you’re getting headaches from the stress of fighting with medical insurance carriers or from metaphorically beating your head against a wall when the person you’re caring for doesn’t seem to even want your sometimes vital assistance, or when the nursing home staff doesn’t comprehend the urgency of a request, or when your child’s electronic medical records haven’t synced and yet it’s on you to make sure their physicians have coordinated their care plans. Maybe your back aches from maneuvering someone else’s heavy body through medical procedures or activities of daily living. Maybe you feel weak in your body after your heart accepts that access to care or respite for yourself is too far out of reach. 

Caregiving can be an enormous burden, one we may not have consented to, and yet it can also bring immense joy. The acknowledgment of this joy is not meant to gaslight the real struggles that a caregiver can encounter, but rather to highlight the interconnectedness that modern lifestyles have otherwise rendered unattainable.

Caregiving might give you the gift of spending a loved one’s end of life with them. Caregiving could be the difference between a loved one feeling lonely and unwanted, and feeling cared for and safe. Caregiving could bring personal satisfaction from a new or polished skill. Caregiving could spread from support of one person to support of a network of people who otherwise had nowhere to turn. 

Friday, February 20 is National Caregivers Day. This day was established in 2015 to celebrate professional caregivers, such as home health aides, nurses, and therapists, as well as informal family caregivers who provide support to loved ones. Each year, this day serves as a reminder of the critical work caregivers do and the need to support them emotionally, financially, and through public policies.

And so…

Dear Caregiver, 

You are fueled by love and compassion. Thank you. 

You do the tireless work that is asked of you. Thank you. 

You do what is right. Thank you. 

You are smart. You are a problem solver. You are strong. Thank you. 

You deserve more—more time, more grace, more financial support. Thank you. 

For all you’ve done and all you continue to do, 

thank you. 

Resources 

The following resources are available on caregiverdoc.com and referenced here for your convenience: 

• Twelve Ways to Support Parent Caregivers

• Say This, Not That: Parent Caregiving Edition

• Creating Caregiver-Friendly Workplaces

• Creating Caregiver-Friendly Healthcare Practices

• Creating Caregiver-Friendly Faith Communities

What Am I Watching? 

The Olympics, of course! And gearing up for the Paralympics, which kick off on March 6. 

What Am I Reading? 

I’m all in with To Be Made Well: An Invitation to Wholeness, Healing, and Hope by Amy Julia Becker. You’ve heard me mention her before, but she really has such a beautiful perspective on life, faith, and disability caregiving. 

What Am I Listening to? 

The Lucky Few Podcast is back for their new season and they are tackling all of their lessons learned over time in raising children with Down syndrome, including the wish-I’d-knowns and the we-got-luckys.

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.