Facing Challenges, Uncategorized

Caregiver Rant

18th hallwayThe definition of the word Caregiver is pretty straight forward–“a person who provides direct care.”  Yet, so often as a Caregiver I find myself NOT able to give care or at least not care that will really help.   When I have my “down” days, the source is most often this feeling of helplessness.  Whether it’s watching your loved one tortured by an expert IV team who can’t find a vein even with an ultrasound machine or struggle with extreme nausea despite having the best medicines designed for chemo patients, the inability to come to their rescue takes its toll.

I’m a terrific caregiver when I can DO something!  Bring on the laundry, cleaning, cooking, medicine giving, bandage changing, hand holding…. I’ll pick out a funny movie, upload a good book to Kindle, make your favorite meal, drive you to the hospital, mix up an essential oil combo for insomnia, figure out all the paperwork and insurance red tape, make a healthy smoothie, search everywhere for the most comfortable t-shirts, find the perfect PICC line cover or sweetly (!!) explain to customer service for the 84th time what supplies we need, BUT sometimes those things don’t work or don’t matter or won’t solve the problem.

“I don’t know what to do; dear Lord please help me.  I don’t know what to do; dear Lord please help me,” becomes my mantra occasionally.  I know that prayer is certainly the very best solution in this type of circumstance; however, THAT particular prayer doesn’t really feel productive.  These are the days I feel like screaming.  A high-pitched horror movie girl scream that goes on forever, not just a little scared of a bug, “Ahh!”  I think about it, picture it, hear it, and then just about the time I can almost feel myself doing it…..SNAP!  Reality pops into focus, and my first thought is usually, “Would you just stop it, Quendy! You are stronger than this! What will people think?!  Your Mama and Daddy raised you better than that!”  There is a reasonable voice inside my head that saves me every time.  I’m super grateful for the voice, although sometimes I wonder what would happen if I ignored the voice, and I DID scream.  Would the nurses call someone?  Would the “men in white coats” that I’ve heard about but never actually seen come and take me away?!? And if so, would that actually be a good thing?  Maybe they’d give me a sedative and all would be okay?  Or maybe I’d get a straitjacket and find myself locked in a room with Nurse Ratched?

When I get this way, I think about those who have it much worse than I.  I am a lucky one, and I will never allow myself to completely lose sight of that even on the toughest days.  I can only imagine the agony that parents go through when they must watch their children endure this awful disease and the procedures designed to overcome it.  I honestly don’t know how they bear it, and yet, I understand that they do what they must because of love.  I am also one of the lucky ones because despite the fact that we are constantly concerned about money, we have good health insurance, a reliable car, a nice home, and enough to buy what we need.  I am aware that there are so many who are not only battling disease, but also, have to worry about their homes, jobs, children, and medical bills.  The enormous weight of the burdens of others breaks my heart.

It’s that bone weary tiredness that gets you; both patients and caregivers eventually succumb.  No matter how upbeat and optimistic you are, no matter how much faith you have, sometimes the only thing you can think about is how great it would be if you and your loved one could have ONE day off.  Sure a week would be nice, or forever, if Santa really exists and is feeling extremely generous, but let’s start with ONE DAY.  That doesn’t sound like too much to ask, does it??  For every single caregiver and patient, just ONE day off to enjoy.  Here’s the kicker….I”m not talking about a day at the spa, or front row seats to Springsteen, or a trip to my beloved beach.  I’m saying a WHOLE day DISEASE FREE.  No infusions, transfusions, pills, neutrophil counts, platelet counts, magnesium levels, hemoglobin levels, enzyme levels, allergic reactions, bacterial infections, viral infections, fungal infections, vital signs, biopsies, CT scans, x-rays, ultrasounds, central lines, PICC lines, chemotherapy, tumors, antibiotics, fluid intake, fluid output, fluid buildup, parking garages, needles, waiting rooms, hospital rooms, masks, health insurance issues, money worries, ……..  In other words, FREE FROM HAVING TO THINK OR WORRY ABOUT STUPID CANCER FOR AN ENTIRE 24 HOURS!

caringP.S.  Yes, that was somewhat of a rant, but I’m okay, so don’t worry about me.   I know that with God’s help I, along with thousands of others, will get up tomorrow and keep on doing this “job” that is both blessing and burden.  We will continue because despite our need to rant, cry, scream, or grab a moment alone occasionally, we don’t want to be anywhere else except holding the hands of the ones we love!

P.P.S.  This is for caregivers and patients of all the awful illnesses out there, not just cancer.