Caregiving is the most stressful and difficult job there is. I remember when my son was born. I delivered him and 24 hours later, my husband and I were sent home to care for this precious human on our own. Our doctor and friends referred us to reference books to guide us. The manuals were overwhelming and confusing and our son was healthy and typical. Emily was born less than 2 years later. The manuals I had were utterly useless, except for kindling on a fire. They were not going to guide my husband and I through the uncharted territory we found ourselves sinking into. Each child is unique. Some are medically fragile and require multiple procedures or assistance for feeding, communicating, or moving. Some children look “fine/typical” but have issues not visible on the exterior. This further muddies the murky water.
Having a child that has severe developmental delays, or a rare disorder is daunting. We are thrown into a world of acronyms: OT, PT, IEP, GAIT trainer, NG tube, MR, MS, GD (Globally Delayed or maybe a word that would have you throwing coins into the curse word jar, depending on the day), DD, VI, SI. to name a few. Dr. Google is suddenly our new BFF and late-night call. When I started on this journey, I had Yahoo to help me with my searches. There were no Facebook groups or support networks. I felt isolated. 22 years later, it still feels isolating at times.
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, seek, or ask for the support we desperately need. 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 missing something important. 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 rarely spa-inspired or glamorous. 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 caring for someone with a rare disorder or disability are a force when the battery is low. Imagine the collective power on a full charge.