Aging, Death, Elder Care, ER, Everyday Life, Malpractice, Nursing Homes, Parents
Daddy has no voice but what other’s give him. And in the fertile ground of nursing home life, Daddy’s need of voice has grown big. What will this need deliver?
For better and for worse, my sister and I give Daddy a voice. So after a string of better weeks, the worst showed up early last week, leaving my sister and I with no ability to make heads or tails of Daddy’s jumbled whispery sounds. To be sure, it’s a little easier in person. Then Daddy and I can resort to using our home-grown sign language, where I ask questions and then give Daddy a multiple choice quiz. If Daddy holds up one finger, I know he wants the first alternative; two fingers the second and I try not to cloud the issue with three or four choices. Better to keep the choices etched in black and white, otherwise Daddy finds it hard to make a choice at all.
I’m no better at making decisions than my father. In Myer’s Brigg talk, I’m an INFP, which (in part) means I dislike being hemmed in by predestination, even if at my own free-will hand. What sounds good now may not a few hours later. Reading between the lines, I’ve sort of picked up that this indecisive tendency of mine drives the decisive- J-types in my life just a wee bit crazy.
If I lived by my lonesome, I’d simply bask all day long on the sands of indecision and perennial lateness. Maybe I was born to be an island girl, where the sands of time slip through the fingers of curled water and drift slowly back to the ocean floor, to be pulled back at some future great wave. I love going to the beach, where I can listen to the gulls and smell the salt on my tongue, then forget my cares and get lost in time as I gaze off the shore to find that fuzzy point where sea meets sky. There’s no urge to rush; I know real life will wait.
But wait! Isn’t this the kind of stinkin’ thinkin’ that caught the nursing staff off-guard on Tuesday, when I arrived to find Daddy with cracked lips and fuzzy mouth, dehydrated before blind eyes? It is because of Tuesday that I now know actions do not always speak louder than words, especially for elder care, when those in charge fail to take charge. When signs of disturbance go unseen, undercurrents lurk just below the surface of everyday routines to pull down the Daddy’s of this world. It takes a watchful life guard to help someone like Daddy speak volumes; to hear a cry for help from a soundless parched mouth.
I’m no life guard. But even for an indecisive girl like me, it was easy to see Daddy was beyond thirsty. So I set about to make the nursing staff aware of Dad’s symptoms, expecting someone to jump in and offer my father a life-line. Instead, the nursing staff shrugged and went on its merry way, sometimes offering me a little song and dance for my trouble. I heard something eerily akin to that whistling island talk ditty: Don’t worry. Be happy. Then for an encore, I listened to some stanzas of false optimism, in words that called to mind that special Broadway musical…“The sun will come up tomorrow, bet your bottom dollar, tomorrow, there’ll be sun.”
I couldn’t believe my ears. And the thoughts singing and dancing between my ears were just as incredible.
Yes. There will be sun tomorrow. But what about daddy? Will Daddy still be around to see the sun come up tomorrow? Hey. Just so you know. I’m worried. And I’m not happy. Can anyone hear me? Or have I washed up on La-La Island? Are there any decisive-J’s working at this center? If so, please report to Mr. Pappas’ room. Now! Mr. Pappas is in desperate need of a nurse who can connect dots and connect Jack to an IV.
Time didn’t stop, though it seemed to. Nothing productive happened for six crazy hours. The nursing staff went around its routine business, but meanwhile in my father’s room, all was far from routine. My brother and I got little liquid into Dad by mouth, while worse, the nursing staff could get no liquid out, even by catheter. So four hours into our visit, with my brother’s J-support, I drew a line in the sand. I asked for Dad to receive fluids by IV.
Can you believe the doctor said no? He said, let’s wait and see how Mr. Pappas is doing tomorrow. The doctor refused to issue an order to permit nursing staff to give Dad an IV and then refused to issue an order to send Daddy to the ER. It took two hours for the ER call to be made. And it came with my stubborn refusal to leave the nursing home premises until Dad recieved an IV.
All this came after my meltdown. After the 911 dispatch attendant told me I had no power to call on Daddy’s behalf, in spite of having a medical power of attorney, as Daddy was under a doctor’s and nursing home center’s care. Ha! If they only knew. And it came after I glared and spoke a few curt words at the poor girl–in the wrong place at the wrong time–who was sitting behind the nurse’s station desk. And I glared until she made the decision to give me her voice.
The gift of voice has nothing to do with songs and dances and everything to do with the quality and quantity of everyday life. We live impoverished until someone takes time to forget the sands of time and listen to our stories. And if we have no one to helps us listen to our lives, we might as well live life on the sands of some deserted island.
But I wonder: What happens to those elderly voices, that are feeble and past their energetic prime–like those of Daddy, and Miss Alpha and Marie–that take time to birth, and that even after a hard labor, come out barely there and hard to recognize as words? To be heard at all will require the listener to be willing to operate on island time. In the scary world of nursing home life, for these barely heard voices, it’s a matter of life and death.
You’ve pegged this one precisely. A voice for the voiceless is what we must be inside one of those “care” facilities, and even more. We must nag, cajole, demand and pitch flat-out fits at decibel levels guaranteed to get the attention of the neighbors down the block if not the nursing staff, and we must do it on a regular basis if needs are not being met.
Once upon a time, I earned my living as a medical social worker. This was back in the days before medical social work was reduced to filling out insurance and medicare forms and “working the system” on behalf of bureaucrats and administrators as much as for patients.
I learned a lot in those days, and one thing I learned was not to fear doctors and nurses and not to be caught up in the medical mystique. Another lesson that’s been useful with my own mother is to show up unannounced and often.
Anyone who isn’t certain what kind of care is being given should set the alarm and head to the hospital or nursing home at 3 in the morning. It can be instructive.
It’s also a matter of life and death, as you so rightly point out.
And I can’t believe 911 wouldn’t respond to you. How can that be? That certainly is one issue I’m going to have clarified before Mom goes into any care facility in the future.
I have her medical power of attorney, too, and I understand that to mean that I have the right to make decisions.
Anyway. I saw the word “meltdown” in your post and trust me – I’ve been there. Thank God you were there, too.