Caregiving is the most difficult job I have ever done. This is my answer after 37 years of working in the real world. (Longer if you count the babysitting I did when I was still in elementary school. Oh, yes. Times were different in the ’70s.) When I was 20, the answer would have been dispatching or customer service. I am not sure which job was harder. If forced, I would pick dispatching (truck drivers at one company and medical imaging technicians at another) would edge out customer service by a fraction. Directing and managing grown-ass adults that behave like toddlers is not easy. With that said, no other job has been more challenging (or fulfilling) than being a Caregiver.
We deliver our children. After a few days, they send us home with them and expect us to figure it out. We read books that map out typical behavior and/or milestones. It is not easy to raise a child that seems to follow the manual. If our child misses milestones or has health issues, then what? WTF now? Some are medically fragile and require multiple procedures or assistance for feeding, communicating, moving. Some children look “fine” or “typical” but have issues not visible. This further muddies the murky water.
We are thrown into a world of acronyms: OT, PT, IEP, GAIT trainer, NG tube, MR, MS, GD (Globally Delayed or God Damn depending on the day), DD, VI, SI. to name a few. Dr. Google is suddenly our new BFF and late-night call (and not the good kind). When I started on this journey, I had Yahoo to help me with my searches. There were no Facebook groups or support networks. It felt isolated. 21 years later, it still feels isolating at times.
This year I began working with the group We Are Brave Together. This organization, founded by Jessica Patay, is on a mission to support parents caring for children with unique needs. Whether a parent is new to this world, or a few decades in, We Are Brave Together wants to be a lifeline and safe place to land for them. I am excited to facilitate a support group in my area. As I raise awareness for our first in-person meeting later this month, I am met with some resistance. There are a variety of reasons caregivers do not take the time to step away from the job they do every day.
Supporting caregivers is not easy. Many will not ask or seek support or help. Caregivers have all the excuses:
- No one will understand my situation.
- My child is healthy except for …
- I don’t have time to get support.
- I don’t want to be a burden to someone else.
- I don’t want to bring others down.
- If I start talking about this, I will just cry and never stop.
- My child is alive, so I should be happy. I am luckier than other parents. (Isn’t that one a doozy?)
- I have no one to leave my child with so I can get a break.
- It’s my job to care for my child.
- My son/daughter “just has” or “only has”…
- Other parents do it alone. I should be able to as well.
These are just a few of the excuses we use to not accept or ask for support.
Caregivers are tough, stubborn, relentless. They are problem-solvers. They are protective. They put everyone else above themselves. They do it mostly without complaining or asking for help.
This works well until it doesn’t. The reality is none of us are meant to do this alone. No one is equipped to handle the amount of stress we put on ourselves. Often our children require more time and attention than one person can provide. We are not created to care for others all the time without taking time to rest and recharge. We think rest is optional, but the truth is rest is vital.
When working with a client on the importance of rest, I often use our cell phone as an example. If our cell phone is down to 10% battery life, we freak out. We panic to find a charging cable and a source of electricity. We worry about the battery dying and we miss the call or the thing. A dead cell phone is useless. We need to think of ourselves as cell phones. We cannot continue to give without taking a moment each day to recharge. It is not sustainable. We will crash and burn. If that happens, and it will, then who will be there to take care of our loved ones that we fight for each day?
I am a caregiver first. This is how I define myself. In order to maintain this title for years to come, I had to redefine the meaning. Caregiver first means I care for me FIRST. It is the only way I can continue to care for the family I love.
My self-care is #boringselfcare. I drink more water and less wine. I schedule well-checks for myself. I ask others for assistance without feeling guilty. I refuse to beat myself up or feel guilty for putting me on the list. I no longer suppress my emotions. I release my anger and sadness along with my joy and happiness.
I take time to charge my battery a little each day. By doing this, I have become a better caregiver. I am more productive, powerful, and positive. It is my mission to help caregivers discover the magic of self-care. Caregivers are pretty powerful on a low charge. Imagine the things we could do if we were 100% charged.
To find out more about We Are Brave Together and get connected with other caregivers virtually and in-person, go to: https://www.wearebravetogether.com/