Caregiving and Healthcare: Can't We Just Get Along?
So, I was raised to treat everyone with respect. Withhold the cross word, keep comments to yourself, be mind full of things that you say as your intent may be different than how it is received. Through this journey, I have officially lost my filter.
Our care providers have been amazing, for the most part, and everything they have done has been with respect and genuine care for my love, while taking all of his neurological challenges in stride. It has been a sojourn, but we manage juggling coordination of care and benefits, as well as hospitals and emergency rooms. Hazel the Wonder Dog has been warmly greeted from afar, as any working service dog should be. I have mastered the art of “fudging a little” to get what we need, when it’s become impossible to get. Take that, you crabby medical review boards!
Covid had placed a great wall between us and our care providers, most of which have made adjustments to continue care. I love the tele-med calls, as long as our consistently inconsistent internet isn’t being difficult. We make the haul into the city for certain services, masks in place, until you pass the parking structure and maneuver into the building where you’re instructed to remove your mask (which I totally coordinated with my outfit) and put on a hospital mask. UGH! Those hospital masks are absolutely not as comfortable!
So, we are scheduled for a procedure, “the last one, I promise, my love”, at the hospital. A relatively simple procedure where prep and post-procedure waiting is longer than the procedure itself. The day prior includes calls from everyone checking insurance, the barrage of covid related questions, and all the steps of pre-procedure preparation. I confirm that I need to be able to meet with the nurse or whomever regarding what they’re doing, how long for test results, the basic questions. I always love, “are you his caregiver? You’re his wife …” OMG, I think as I clench my fists, yes I’m his primary caregiver. With my “title” straightened out, my responsibilities confirmed and approval to stay with him until we can chat with the provider, we get ready for “the last procedure.”
Funny, how I thought this was going to go well. As we arrived at the hallway adjacent to the procedure area, we were greeted by an individual that was not educated in the human species. While I expect a bit of challenge with identification, medical card, etc., I expected humanity. How dare I ask, “are we to wait there for the staff to come and get him?” “Oh, not you”, I’m told, “only him”. “I coordinated with the nurse yesterday that I’m to stay with him so that we can ask some questions, etc.” “Well, cannot he speak for himself” she asks with a bit of acidity? “Yes, he can, but …” “Well, that’s that. Give him a kiss and on with you. We’ll call you when he’s done”. As I look over at my love, he’s wide-eyed, both in panic and a little bit of embarrassment that I might cause a scene. “FINE”, I mutter as I give him a kiss. “I’ll be waiting right here for you when you come out. Don’t go down the elevator, wait for me.” I hear a mumbled “ok” and watch him walk off like a kid going to school for the first time.
Hours later, summoned by the procedure nurse, I meet my love at the elevator. Standing all handsome and tall, with slightly mussed “bed head”, I asked how it went? “Okay I guess” which is the usual answer followed by, “can we just go home?” I asked about the cotton ball taped to his hand; he replies that they took blood out of his arm. “Where’s the cotton ball for that?” leads to an admission that he threw it away. I’m already thinking, “what did they put in or take out of his hand?” He hands me a wrinkled paper with post-procedure notes, and off we go back to the ‘burbs. Within a few hours of arriving at home, my love is not able to share a lot of information, other than, “they forgot about me, I had to remind them it was time to go home.”
The procedure nurse calls the following day, asking how everything was going. I asked her about the blood draw in his arm. She tells me she didn’t draw from his arm, but from his hand and he was very quiet and didn’t communicate much the whole time. She said when she asked him a questions, my love would smile and nod or just say okay. “Did you think to check his file to see that he has a neurological disorder? That he’s hard of hearing in his left ear, or that he’s basically blind in one eye?” was my retort. I asked about my conversation with the pre-procedure nurse the day prior; apparently my concerns were not placed in the file nor was his file flagged to represent his neurological disorder, hearing, and visual challenges. She stated that she was concerned that he didn’t always understand what was being said, but also didn’t take the time to read more than what was in the file regarding the procedure. She expressed regret, which is fine, but how many other people are in a similar situation where the “caregiver”, who’s responsibility is the person they’re caring for, isn’t permitted to act on behalf of their charge? God forbid that caregiver is the spouse? “Oh my gawd”, in my best Marissa Tomei voice! I made sure that the office manager of the surgical suite was aware that the front office staff needs additional training on caregiving, that everything is not so clear cut. View the patient as an individual human being, to be considered different in many ways.
caregiver - a family member or paid helper who regularly looks after a child or a sick, elderly, or disabled person.
Caregiving is a unique challenge, and I think that part of the challenge is that it’s often viewed as a “paid” job, not necessarily a job/responsibility that spouses and family members are more often than not tasked with today. I totally get that in the time of covid, medical facilities want less people around as a means of reducing the opportunity of germ transmission. We take great care in preventing my love from contracting a virus that can, and most likely will, cause great harm to his already beat-up system. So, there has to be a happy medium.
My point in this, is that you have to speak up in the best interest of your person, charge, spouse, child, whomever. Their needs are to be met, when it comes to comprehension of the very diverse medical world. As a caregiver, I will continue to fight to make sure that the medical needs of my love are met. I will chose my words as respectfully as possibly, but when the chips are down, I will say" “nay, nay” and I will lose my cherub-like demeanor (God bless John Pinette).
