Raising My Ebenezer

Pondering My Stones of Remembrance

You Know You’re a Caregiver When . . .

Last year I asked my many Facebook friends who are caregivers to complete the sentence “You know you’re a Caregiver when . . . ”  I was overwhelmed with the scores of responses received.  These are too good to just tuck away in a file.  Please know this is also not an exhaustive list; I would love to have you add your thoughts!  (Photo note – even Caregivers need to get a break, here are some of my amazing caregiving sisters.)

Collected by Joni and Friends Greater Philadelphia October/November 2014

You Know You’re A Caregiver When . . .

  • You go from crying to laughing in a matter of three seconds!
  • You have felt the unbearable loss, beautiful gain, or a lot of the time, both.
  • You love in such a way that it is a force, and we see it’s strength when we lean in close together, dig beyond the pain, and find there is indeed, a light…a hope… a unity… a strength that comes from Christ alone.
  • You are always wishing that the ‘Magic Fairy’ really did live here
  • The school district has your number on speed dial.
  • Everyone at the pharmacy knows you by first name.
  • The word “Seriously”? is used every night.
  • You’re the first one up and the last one to bed each day
  • You can rattle off what half a dozen different insurance companies will and will not cover
  • You take pictures of the bizarre situation in which you find yourself – otherwise no one will believe you!
  • You carry a set of allen wrenches everywhere you go.
  • You politely ask the mechanic to move over so you can fix the lift
  • Everywhere you go you’re carrying a bag full of stuff like you’re moving in!
  • The ability to recall medical terminology that you did not go to school for … with no schooling, training, or desire to have all this information rattling in your head…except you know at any moment you can supply in depth medical information on your loved one(s) – that is when the medical staff looks at you and says how do you do that and you reply I have a choice?!
  • Doctors offer you a medical degree after one conversation! Or ask if you want a job because of what you say or understand.
  • You never leave the house without baggie of wipes and a latex glove.
  • You get offered a job at the drugstore because the employees don’t know what a PPI is or where it goes and the manager hears you telling them.
  • You have a huge party because someone finally uses the toilet for #2.
  • You lay out those meds each night.
  • You are the only one who can translate to unfamiliar listeners.
  • You’ve got a better acquisition of terminology from Anatomy & Physiology classes than most of the medical profession.
  • The prospect of another hospitalization puts 20 more pounds on your hips.
  • You wish human cloning was possible, because you don’t need another spouse, you need another you!
  • Someone asks to borrow a pen but you don’t have one in your purse but you can lend them the thermometer that is in it 🙂
  • You long for the great Homecoming so you can finally see all His children as He does, without barriers, illnesses, or challenges
  • Your kids are better at using an iPad than most of their typical peers.
  • You have more doctor’s phone numbers in your phone then family member’s.
  • You see certain doctors more than some family members.
  • Your doctor gives you their cell number and says “just text me what’s going on” and from your diagnosis calls in the appropriate script!
  • You go on vacation and you spend as much time researching hospitals in the area as you do things to do….just in case.
  • You somehow are still alive after years of ongoing sleepless nights up with your SN child.
  • You celebrate typical naughty kid behavior, like the first “no” or lie….because it’s about 18 million months behind schedule and you are tired of hearing how “lucky you are that your kid doesn’t XyZ”
  • You start every search for a school, swim class, karate lesson, Sunday school teacher, travel agent, birthday party location, airline trip, etc etc .etc with “Do you have any experience with….?”
  • The waiter turns green upon overhearing the conversation topic at your “night out”!
  • You carry IEPs and diagnosis reports with you everyday…just in case.
  • You constantly weigh the benefits of getting away with the “fires” you’ll put out when you return
  • Your most viewed smart phone pic is your elderly parents prescription list
  • You view a hammock, resort, beach, floor, chair, or rock as an equally valid and ideal place to catch some sleep.
  • The ER conversationally asks where you work as a nurse
  • You go out to eat with a friend and automatically pick-up two of everything…plates, silverware, etc in the serving line or better yet start to help the person beside you fill their plate at the salad bar.
  • You have to take a picture of your child anytime you leave the house on a special outing…that way you have THE MOST RECENT picture of your child available to give the cops when he runs away.
  • You know all the food brands and items that are gluten free-peanut free-soy free-dye free…
  • You have mastered the art of the fake smile and swallowing the lump in your throat when you hear your friends complaining about something their kid did-that you only pray your child will be able to do someday.
  • You have a song you sing to your child for all sorts of daily tasks-a different one for each…toothbrush song, tinkle song, poo-poo song, bath song…
  • You know it all comes back to poop! Bad behavior, toe walking, stimming, all comes back to poop!
  • Although you really appreciated that Holland poem thing the first time you heard it-you will pull your hair out if you hear or see it one more time!!
  • You get that feeling of comfort when you look into the eyes of another special parent and you both KNOW how hard it is and without saying a word you just know they get it!
  • You finally have a day to yourself and you don’t know which way to run first!
  • You wipe more butts in a day then just yours
  • The smell of poop does not bother you.
  • You can call you bff and say I quit I’ve seen more poop today than carter has pills
  • All of your friends with ‘typical kids’ run when they see you coming
  • You can’t identify who you are when after 25 years (and still going) of care giving – your own body fails you so that you become the one needing care and you no longer have ANY friends… – you simply don’t belong anywhere…
  • You no longer have your own identity … you are now “Jonathan’s” mom ….Not that I care, but really, I am more than a mom!
  • You are used to having hubby’s power chair in the bedroom
  • You have no problem rattling off sentences primarily made up of acronyms such as OT, PT, ESY, ASD, CP, PDD, TBI, ASL, ODD, EI, PCA, FAPE, ODD, ADA, IEP, SSDI, IU, FBA, DX, LRE, MT, DD, FASD, HI, PD, DSM, TSS, ADHD, BP, MHMR, LD, SPD, ABX, DS, PRN, ABA, BSC…
  • Upon seeing a beautiful baby belly you startle because there is NOT a g-tube button.
  • You’ve visited your state reps office…and you’re not afraid to go back.
  • Your Christmas gift list includes a million small gifts for medical staff, teachers, aids, therapists to demonstrate your appreciation…and every time you are in the middle of making them homemade gifts from the heart (to stretch a buck) you wonder what the heck you were thinking!
  • You congratulate yourself for having the situation under control, only to have a sibling go rogue.
  • Bowel elimination is only off limits as dinner conversation when company is over…in which case you speak of it in code.
  • You’ve been restocking the diaper bag you carry in the car for 24 years.
  • You’ve gone years without going on a date with your husband.
  • You went on your first trip alone with your husband 23 years after your child was born.
  • Your child throws up at a restaurant, you catch it in a cup and continue eating your meal and carrying on your conversation.
  • Your pediatrician, urologist and neurosurgeon are all on speed dial, and you have their home numbers as well.
  • You go out to lunch with the ladies in your support group and talk about your children’s bodily functions while enjoying your meal.
  • You haven’t slept all the way through a night since your child was born…24 years ago.
  • You have all of your child’s pertinent information memorized and rolling off your tongue, but it takes you 30 seconds to think of what your own date of birth is.
  • You’ve spent hours and hours and hours on the phone (mostly on hold) with the insurance company, social security, case workers, doctors, etc.
  • You get excited over the latest DME catalog that came in the mail.
  • You understand that life circumstances have all been ordained by God, made you into the person you are today with the ministries and circles of friends you have, and there isn’t much you would change if you could.
  • You understand that being responsible for another human being’s well-being is a sacred responsibility that, while the hardest job you’ll ever have, is also the greatest blessing you will ever experience.
  • You go to the ER and they say, Oh no what did he do this time? The staff knows who you are the minute you walk in!
  • You consider your own hospital admission as vacation
  • You can sleep soundly while the attendant is in your room getting the person you share the bed with up and dressed.
  • You wake from a dead sleep to mumble the answer to the PCA’s question and then roll over and go back to a deep sleep.
  • You can’t even remember all the people who have keys to your home
  • You only shop in the same stores because the clerks don’t even blink when you are laying on the floor with your 14 year old son in full body restraint, and they call over ‘need help or have you got this’?? and go on with the next order when you reply “we’re good” !!
  • You’re out to eat and your loved one begins coughing while eating and the entire restaurant stops to stare while you continue eating – you know as long as they are coughing they’ll be fine!
  • You pack a hospital bag for the arrival of your baby and 13 years later it’s still packed because you never know when you are going to need it.
  • I realize my desperate need for Jesus!
  • I also have realized that my life is harder but NOT worse than others!
  • When you change a diaper of a little baby and marvel at their tiny little bottom!
  • When you hear, “Mom, HELP!” and you realize you don’t even have your kiddos with you (because you are in the middle of a store or somewhere else you consider solitary)–LOL!
  • When your son fakes feeling sick so you don’t leave him overnight!
  • When you can talk about bowel movements while scarfing down a candy bar without batting an eye
  • You are the go to girl for any need that comes up in your extended family.
  • In the past nicks on the corners of the walls and doorways would have bothered you. Now they are a reminder of how thankful you should be for your son being able to get around the house with his walker.
  • When you have a tablet and pen on your nightstand to jot down idea’s you’ve just dreamt about in the middle of the night.
  • I can only concentrate on being my hubby’s caretaker but I feel blessed and privileged for such a time as this
  • I receive the blessing of Caregiver Day of Pampering.
  • Going to work is easier than being at home,
  • Your child cuts another students’ clothes with scissors and you think, “wow, his motor skills are improving.”
  • Resilience is your secret weapon
  • You find joy in the little things
  • You get a big smile with no words
  • You become prematurely gray
  • You wake up and everyone is happy!
  • You are suddenly an advocate!
  • You wonder if where you are going is handicapped accessible.

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