What I Know (and Don't Know) as My Mother's Caregiver

Before I begin, I absolutely have to say that I adore my mother and wouldn’t change a thing about our relationship. Being her caretaker is one of the most important aspects of my life and has shaped who I am today. I do not resent my lot in life but rather relish it.

• The Mighty’s Caregiving Toolkit

Step 1: Forget the definition of sleep. Sleep is what you call those odd hours of the night, or more often the day, that you aren’t on “active duty.” You’re still on call, but you just happen to be recharging at the same time. Multitasking! Add that to your resume!

OK, so I’m kidding. Partially.

I didn’t go looking to be a caretaker. I have no medical training and when it comes to even managing a stranger’s scraped knee, I am incredibly squeamish. My beloved mother has been ill since she was 19. Before that she was the caretaker of her own mother that struggled with breast cancer. Sensing a family trend? I’ve been raised to be able to sense her needs before she asks. I know when she’s in pain, nauseous or even exactly where it hurts without her saying a word. I know how long the average ice pack lasts during a three day migraine. I know when the situation calls for hot tea or ice water. I can even tell when she needs an iron infusion without seeing her blood work. We have created a completely silent language that we speak in all the time. I can clean and access port-a-caths and PICC lines. I can run medication in my sleep, and while I have basically done this, I do not recommend it – it’s completely unsafe. I can give intramuscular injections and subcutaneous injections. I have filled her body with poisons 19 ways to Sunday and I hate every single one of them. Some help, but most of the time they make her worse.

I know all of this, but I will never know or understand how she deals with the pain on a daily basis. Her birthday is coming up in June. She will have had Crohn’s disease for 31 years and lupus and psoriatic arthristis for six years. She has taken Prednisone since her first diagnosis. I don’t know how she does it every day. She has always been the best mother. She was at every horseback riding lesson and show, every school play, choir concert. She’s my best friend and it pains me to watch her struggle.

Two years ago I had brain surgery for a birth defect called a Chiari malformation. When I developed meningitis, she was there every 12 hours running one antibiotic and every eight hours running another. The more my health deteriorates, the more I understand the pain she deals with every day. I understand the pain but I can’t see how she’s smiling every day. Every single morning I wake up and I model myself after my mother. I smile when I feel like hell and I project positive vibes out into the universe. Just like she told me to when I was little.

So you want to be a caretaker, huh? Buckle up for the ride because it’s going to be the most painful, grueling, exhausting, and overall rewarding thing you do in your life. You will be closer to your charge than anyone else. I had to grow up before anyone else my age did but I wouldn’t change it for the world. I love my mother and I love taking care of her.

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