It’s 3:00 am on June 27th, 2022. I wake up to the music of my alarm and slip into the outfit at the end of my bed. I text James to see if he’s awake. He is. The medical transport will be here at 4 am. I make myself some coffee and put some crackers and a banana in the big canvas Spartina 449 tote bag I’m bringing to the hospital. It already has:
• two throw-up bags
• a black night mask and foam ear plugs
• a clean urinal
• a small roll of toilet paper
• two large lidocaine patches for his back
• a few Lorazepams in a bottle
• two 8-ounce bottles of water and straws
• a small can of Kava powder for one of the waters
• my Healthcare Power of Attorney document
• a spreadsheet of medications and supplements
I’m ready.
At 3:30 I slip quietly into James’s room. He clicks his bed’s remote to turn on the light underneath it. I put two used urinals, James calls them “jugs,” by the door, and move the chair they were on.
James puts on his eye mask, so I can turn on the light and locate the soft flannel pajama pants and socks he’ll wear to the hospital today. When I turn off the light, he lowers his bed flat. I pull on his pants with a little effort from James to raise his hips for a moment, then I put on his socks.
He hasn’t had any food or liquid since last evening, so his blood sugar is low, but he’s in good spirits. We’ve been waiting almost four months, since March 8th, for this appointment to get dental care at the Medical University of South Carolina (MUSC) Dental Clinic. He’s looking forward to having healthy teeth again.
James has been too sick to see a dentist for a few years. When he could no longer hold a toothbrush, I had to learn how to brush his teeth. You cannot imagine what it’s like to brush a grown man’s teeth for him.
I cared for my stepmother when my dad passed away and brushing her teeth was actually fun. I’d load the toothbrush and put it in her mouth, say, “Here we go!” and just have at it. She leaned over the sink, letting the foam spill out, grinning. Sometimes she’d take the toothbrush and do it herself once I got it started. She had Alzheimer’s and, although she had angry moments, even hitting me a couple of times, she was childlike in her amusement with things like this.
James, on the other hand, is fully aware if the tragedy of his situation, and all of his brilliance is intact. He knew how he would brush his own teeth, and how faulty my technique was. He’d say something every time I pulled the toothbrush out to reposition it.
“You’re doing it wrong,” “You missed three teeth,” “You always do it too hard,” “You never get that tooth right,” “I always have to tell you what to do,” “You’re making me gag. I’m going to throw up.”
And flossing him was even worse. The acrobatics required were beyond the angles my fingers could bend. Eventually, it went so badly he began asking that I only floss two or three tricky spots and forget the rest.
I tried a water pic for a while. Noise is an issue, so, even with foam ear plugs and noise cancelling headphones, most water flossing models were too loud. I have several rejects sitting in a closet, but eventually I landed on the Water Pic travel model. It’s the quietest one. I’d prop a tub under his chin and use the water pic the best I could. Of course, I was subjected to just as many corrections and criticisms, but I did my best to point it correctly, and the water pulsed between his teeth and ran off into the tub.
We were both tired by the time we did his teeth every evening, so there’s that. On a rare occasion he’d make a joke. He really has a fantastic sense of humor, but it wasn’t showing up often at this stage of his illness, nor under these circumstances. Nearly every night I’d leave his room holding back tears. On some occasions I’d get to my room, fall onto my bed and quietly wail. I was demoralized from the criticism. Didn’t he care how hard I was trying? And all the things I did get right didn’t seem to matter.
He was miserable and angry.
He wanted to stand over a sink and brush his own damn teeth.
Everyone that thinks these patients are doing this to themselves, are lazy, want to be sick for attention, just need behavioral therapy, or could pull themselves out of it if they really wanted to, are imbeciles. No one ever wanted anything more than James wanted to jump out of that bed and brush his own teeth.
These adventures in toothbrushing were in 2020, in the early days of his complete helplessness. He was at his weakest, and I was completely inexperienced. A stressful combination.
About a year later James became able to hold a toothbrush, thanks to our low-dose use of a drug called Abilify (.9 mg for James, off label, compared to 30 mg, the starting dose for patients with bi-polar disorder or schizophrenia). Thanks to low-dose Abilify, James is able to hold a toothbrush and he brushes his own teeth in bed two or three days a week using a couple of dixie cups. He flosses almost every day, even if he can’t brush that day. I’m so grateful to have been relieved of dental-care duty.
In October, 2021, James had a filling fall out of a molar. He put his eye mask on so I could examine his mouth with my phone light. The hole it left was large and black. As I looked around in his mouth, something I’d never done before, I saw that at least one of his teeth was solid gray, and several others had black dots — visible cavities. It was a rude awakening. You really can’t slack on dental care without consequences.
I bought temporary filling putty at the drug store, pushed it into the big black hole, and began my search for a dentist that would come to the house.
I learned two things:
1. There is no such thing as home dental care in the US. Period. No matter how sick you are, no matter how impossible a trip to the dentist is, a dentist will not come to you.
2. In the UK dentists not only come to the home, they bring portable x-ray equipment, clean your teeth and do fillings.
I realized, too, that he would probably have a seizure from the noise of the drill, so I began calling dentists in my area to see who would be able to treat his teeth under general anesthesia if I brought him to them on a gurney.
No one in our area could do this. Each time I asked what they recommended, or who I should call. They’d send me here and there, but none of the suggestions worked out.
After several weeks, someone finally suggested MUSC, about 90 minutes away. Why hadn’t any of the other dentists I called known about this? We had our initial appointment on March 8 with the MUSC Dental Clinic.
As with every appointment, James went on a gurney by medical transport since he can’t sit up at all. An eye mask and a hat pulled down as well, to shield James from sunlight. The driver silenced any beeps or alarms in the transport and James wore foam ear plugs and noise canceling headphones to shield him from outside noises. When we arrived, the staff found a dark, quiet room for us to wait in. A dentist, dental surgeon and anesthesiologist spoke with me in the hallway so I could familiarize them with James’s sensitivity to light and sound, and his inability to tolerate anyone speaking to him. They quietly went into the room where James was waiting on the gurney and looked in his mouth with a little flashlight. When they came out they told me it wasn’t as bad as they’d expected, that I’d done a very good job of caring for his teeth and, most importantly, his gums looked healthy.
I wanted to cry. All of my agony over his teeth and I hadn’t done such a terrible job. They gave me an appointment to come back June 27th, nearly four months later. He would be put under general anesthesia, then his teeth would be cleaned and x-rayed. Next, he’d get all of his fillings, and, finally, the dental surgeon would be on hand if, based on the x-rays, extractions were needed.
The team leader was Dr. Ziegler, the brilliant and empathetic dentist who orchestrated the events for the appointment, so that all of James’s dental needs could be taken care of in one day while under general anesthesia. I was thrilled.
Between March and June the temporary putty I’d put in his cavity held tight.
On Friday, June 23rd, the hospital called to provide our arrival time of 5:30 am. I updated the time of the appointment from 7:00 am to 5:30 am on the Modivcare portal. Modivcare is the government contractor solely responsible for transportation for Medicaid patients in South Carolina. I got a call from the driver for the transport company assigned to our ride on Friday evening. This was not my preferred transport company, but the driver confirmed our ride, so I wasn’t worried. He said he would arrive with one other person at 4 am for an on-time appointment of 5:30 am in Charleston. I told him firemen could come for a “lift and assist” to get James down my 5 front steps if they needed help.
It’s now 4 am, and I don’t see them yet. I walk outside. My coffee and my natural adrenaline are both winding me up for the big day. I look up at the stars, still twinkling brightly well before dawn. The humid night air fills my lungs as I take in the view above me, always looking for a shooting star. My crepe myrtle is starting to bloom, and its soft lavender clusters are distracting me from my stargazing.
Finally, impatient, I call the driver’s cell phone, redialing the number he called me from on Friday. It’s 4:15 am, so they’re officially late.
“Hey, are you almost here? Did you get lost?”
“Oh. I’m not going to make it. My other guy told me at 2 am that he wasn’t feeling well, so he canceled. We’re not coming.”
In shock, I ask an obvious question, “Why didn’t you call me at 2 am to let me know?”
I am focused on all that James has been through in the past 24 hours to be ready for this 4 am ride: skipping his night pills, not eating for 8 hours, getting pants on, taking a high dose of Ativan so he could tolerate the trip. I have not yet begun to process the four months of waiting for this very moment only to lose it to the failure of something as mundane as a ride to the hospital.
His reply is so casual.
“The office was going to let you know at 8 am when they get in.”
I have no response for that, so I mutter a reflexive, “Thank you,” and get off the phone.
Standing under the stars, numb and bewildered, the world spins around me. What is this crazy carnival ride I’m on? Did the driver expect us to wait until 8 am, to learn that he was not showing up at 4 am? I’m reeling from the absurdity and the cruelty of the situation.
Having waited almost four months for this moment, and eight months since his filling fell out, now, we simply could not get to the appointment. I think about the three separate teams of medical professionals that have coordinated their schedules for us, that will be showing up at 5:30 to help James.
Imagine that you’ve planned your wedding and hired a caterer. The caterer is key to the success of your event. The date has been set for months. Then, the lead caterer is unable to come that day. Will the catering company simply not show? Will your wedding reception have no food? Will they wait to call you till Monday, when the office opens, to tell you no one was coming on Saturday? Of course not. Every catering company has back-up staff. Someone else jumps in to fill the void. This is normal, responsible company behavior.
How is it that a transport company with a South Carolina government contract, has no back-up plan for one person calling out? Why didn’t the owner jump in and come to pick up James at 4 am with the driver? Is the owner too important for the task? Is their government contract so guaranteed that failure to perform has no consequence?
With tears in my eyes, I tell James the news. “No one is coming. We’re going to miss your appointment.”
In disbelief, like me, James begins to cry. He asks me to leave his room. I hear him crying, on and off, for a long while. We’re both wide awake. We’ve been mentally geared-up for the big event. He finally texts me and asks for food.
I bring his breakfast and silently sit by his bed. He talks about suicide. Why should he keep suffering like this if no one cares? If his life is so meaningless that people can just not show up, that have promised, confirmed, that they would come, then why bother to keep living in this bed, totally dependent on people like them?
At 5:30 am, when the Dental Clinic staff has arrived at the hospital and is expecting James, I call and tell them we can’t make it. I’m crying on the phone. I can’t help it. I’m so ashamed, considering the level of care and coordination it took to have all of these professionals on point that morning to care for my son. A tightness in my chest builds as I recall that Dr. Ziegler, the department head who coordinated the events of the day, told me just two weeks ago that if I miss this appointment it will take about six months to schedule it again.
The nurse on the phone tells me to call the office to reschedule. I spend the next few hours sitting with James on and off. I let him see me cry, quietly expressing a level of outrage, indignation, and grief appropriate to the situation. I’ve learned that meeting someone else’s grief, or rage, on an appropriate level helps to dissipate it for them and lessen its sting. So I carefully do that for James. I don’t hide my grief.
I wait to reschedule.
Over the next few days I do my best, as beaten down as I feel, to raise holy hell with Modivcare, the Medicaid transport contractor who did not assign our ride to my requested provider.
I demand a letter saying it was Modivcare's fault that we missed the appointment. The letter comes a few days later. I scan it and upload it to the MUSC portal, and request a new appointment, mentioning the letter and emphasizing that the cancelation was out of my control.
They call a few days later with good news. James is re-scheduled for October 31st, rather than December or January. In October it will be one year since his filling fell out. Just imagine. We begin the long wait once again, Ibuprophen or Tramadol and pureed food help when the toothache is bad, when it radiates up the side of his face and down to his shoulder.