Just before Mike left Sang’s, he’d lost two teeth. One when he bit into a cookie. Another that he just spit out onto the ground as I watched him walking his loop. His brushing techniques left much to be desired and, of course, he wouldn’t allow anyone to help him. So it was no surprise when, a couple of weeks before Christmas, Elena had noticed that Mike’s jaw was swollen and his lower right gum was inflamed. She’d given him ibuprofen and the swelling subsided, but it was soon back again. We knew he needed to be seen by a dentist, but we also knew he was unlikely to be cooperative. I wanted to take advantage of Matt’s availability before he left town, since Mike was still more likely to be cooperative with Matt than with anyone else.
In discussing the difficulties of keeping Mike in a waiting room with others, how he needed to be constantly on the move, which generally included trying to get into examination rooms, or out the door to wherever, or out emergency exits, Dr. E , our longtime regular dentist, offered to meet us in his office on the Sunday after Christmas, days before Matt and family were scheduled to leave.
One of Dr. E’s dental assistants also joined us. It continued to amaze me that so many people, both friends and professionals, were willing to go the extra mile under difficult circumstances.
At our request, and in hopes of keeping Mike calm, the dentist called in a prescription for Valium. Because it would take an hour or so for the pill to take effect, Matt and I got to Green Hill about an hour before Mike’s appointment, gave him the Valium, and waited for it to start working. Marg was waiting for us in the dentist’s parking lot and helped us get a very groggy, unstable Mike on his feet and into the office. He stayed seated in the dental chair, mostly on the verge of sleep, while Dr. E examined his mouth, then, with the help of his assistant, took X-rays. Matt, Marg and I were on the job, anticipating a difficult time, but our fears were, luckily, not fulfilled. Thank the Goddess for Valium.
A word here about Valium and other anti-anxiety drugs. There were meds that could tamp down Mike’s combativeness, but they also caused him to be unsteady on his feet. Livia and Elena were opposed to those because, with Mike’s constant looping, the likelihood of a fall would be greatly increased. I knew they were concerned with Mike’s well-being, but they were also concerned about their reputation within the licensing bureaucracy. Falls in a facility raise red flags, and they definitely didn’t want red flags.
The immediate dental problem was an abscessed gum, for which Mike would be treated with an antibiotic. But his mouth was a mess, with seven or eight broken-off teeth, and his gums were highly susceptible to infection. We wanted only the most conservative treatment to minimize infection and to keep Mike pain free, but what would “conservative treatment” mean?
As much as I would have liked to continue having Mike be treated by our regular dentist, Dr. E did not take Medi-Cal patients, and private dental work was way beyond my means. Dr. E recommended a consultation with an oral surgeon, so I needed to find a Medi-Cal dentist who could then refer me to a Medi-Cal oral surgeon.
After Internet searches, checking reviews, making numerous phone calls complete with Press 1 for …, Press 2 for …, Press 3 for …,” then being held captive by static, tinny “music,” minutes had accumulated to hours that felt like days. Finally, though, I made an appointment with a dentist who, judging from Internet reviews, was the lesser of several evils.
On the day of our appointment, Dorin drove Mike down to the office in his van equipped with childproof doors. Marg and I met them in the parking lot of the new dentist’s building about 7:50 for the 8 o’clock appointment. Usually Mike would be doing anything possible to get out of the van, and one of us would have to walk some loop with him in the parking lot until the doors opened. That morning, though, he sat quietly in the van until we could get inside. The glories of Valium.
It turned out my fears about a Medi-Cal dentist were unfounded. The office was clean and cheerful. The staff understood our situation and got Mike set up with the dentist as quickly as they could, although “quickly as they could” wasn’t quick enough for Mike. Dorin and Marg took turns walking Mike up and down the outer hallway while I finished the necessary reams of paperwork.
Once seated in the dental chair, Mike needed some prompting to stay there but, unlike Valium-free times, that was easily managed. The dentist was gentle, thorough, and sympathetic to our situation. He agreed that we should do as little as possible and started the paperwork for referral to an oral surgeon, recommending extraction of only the tooth that was most prone to infection.
The front desk woman was knowledgeable about Medi-Cal dental benefits and walked us through what we might expect of coverage for oral surgery.
By the time we left, the Valium was wearing off, and Mike was on his way back to restlessness and anxiety. But it had worked long enough. I dreaded his having to go through the next process. He would undoubtedly have to be anesthetized. As helpful as the Valium was for brief visits, oral surgery would be a whole other affair.
What followed was another round of phones calls, scanning and emailing power of attorney documents to the next office, repeating ID numbers, birthdates, what I’d had for breakfast and Sunny’s maiden name. As tedious as this all sounds, it doesn’t begin to depict the reality of tediousness.
Our appointment with the Medi-Cal oral surgeon was more difficult than had been our experience with the referring Medi-Cal dentist. Despite being assured by phone that staff would get Mike in quickly, we had an hour-and-a-half wait. During that time Mike was up and down, out the door, walking past other offices, trying to get into other offices, coming back into the dentist’s office, leaning over the counter to look around, trying to get back to the treatment area, etc. Marg, Livia and I took turns walking with Mike, but it was an excruciatingly long and busy wait. When Mike finally got taken back to see the dentist, it took him all of five minutes to assess the situation. He felt it would be best to do the job with only a local anesthetic, with help from Valium. They would give Mike a 10:45 appointment, the first of the day, and get him right in so we could avoid the nerve-wracking wait.
The following week, a little before 10:45, Marg and I met Elena and Mike in the parking lot. Mike was somewhat subdued, having been given a Valium about 45 minutes before the scheduled extraction. Mike waited with Elena in her car while I checked to see if the dentist was ready for us. The front desk person gave me two forms to fill out, and took my cell phone number so she could call when the dentist was ready. I completed and waited for the phone call from the office. Mike was getting restless and, around 11 o’clock, I went back inside to check with the receptionist. She said the dentist was flying in from LA and should be there any time. She’d let me know.
At 11:30, after one or the other of us had completed many circles of the lot with Mike, 45 minutes after our “we’ll get him right in” appointment, the dentist still wasn’t there, nor had he been heard from. This was obviously not the oral surgeon for us. Mike’s tooth/gum had not been bothering him for the past few weeks. Marg and I had been questioning the necessity of putting Mike through such a procedure anyway. We gave it up.
Though we’d managed to sidestep oral surgery, it was impossible to sidestep nail-clipping issues. Livia and Dorin had managed to clip Mike’s fingernails and toenails days after he entered Green Hill back in October, but they’d had no success in future tries. By early February, the length and sharpness of Mike’s fingernails was a danger to himself and to anyone else around him. He had scratches, some open, on both arms. Elena also had scratches from Mike’s attempts to push her away during the course of daily hygiene necessities. After we endured several unsuccessful nail-clipping endeavors, Mike’s doctor prescribed trazodone to be taken half an hour or so before the next try.
In a bow to the prohibition against caregivers cutting nails, I joined Elena, Livia and Dorin around 8 o’clock one evening, scissors and nail clippers in hand. By that time, the trazodone should have taken effect. Livia and Dorin’s three sons were also there and the older boys entertained their baby brother while the adults got to work.
Mike had been in bed when I arrived, but he got up as soon as he saw me. He gave me a quick smile and started walking. I led him back to bed and suggested he stretch out. He did, for an instant, then tried to get up again. I sat on the bed in a position that made it difficult for Mike to get up.
My presence, with my nail-cutting tools, was mainly for show. I was more than happy that Livia, undoubtedly a more competent nail cutter than I, was on hand, complete with sterile gloves, cotton swabs, and alcohol.
Mike was definitely more relaxed under the influence of trazodone than he would otherwise have been, but “more relaxed” wasn’t exactly relaxed enough. I sat facing him, blocking his view, talking to him, rubbing his neck and shoulders while holding his upper right arm secure. Dorin, the strongest of the gathering, secured Mike’s lower arm, just above the wrist, in an attempt to keep him still enough for Elena to clip his nails. Elena stood beside the bed, reassuring Mike, or at least trying to, that we all loved him and that no one would hurt him.
At the first attempt to clip a nail, Mike jerked his hand away. We all went on with reassurances. Another attempt. Another jerking away. That was the pattern for what seemed like hours but was probably more like 15 long minutes. Finally, the right hand completed, we shifted positions to secure the left hand, to block Mike’s view, and to continue our attempts at reassurance.
“Take a deep breath,” I said, as Elena retrieved Mike’s jerked away hand. In a doctor’s office, Mike would still take a deep breath at a doctor’s suggestion. However, my attempts to guide him into deep breathing fell short.
The toenails required another, more pronounced shift of positions. At one point Elena somehow ended up on my lap. Eventually the deed was done.
“All done, Mike,” I told him. “Okay?”
He smiled, nodded, got out of bed, and started a loop. He walked around for five or so minutes, then went back to bed.
As I was leaving, Elena, a nondrinker, suggested that vodka might be more effective and less extreme than trazodone. What did I think? I said I thought anything was worth a try—use their own best judgment. What I didn’t say was that I could hardly wait to get home to give myself a vodka treatment.
In my other world, I spoke at an English teacher’s conference about engaging reluctant readers with material of their liking. I never tire of mounting that soapbox, and the talk was well-received.
New Wind Publishing had a table in the exhibit hall where we hawked books and talked with teachers, some of whom I’d known from years past. It was good to reconnect, and to be out in the broader world, especially since the weekend away had been free of emergency phone calls.
On a visit shortly after the nail-clipping caper, I managed to get Mike to stand still on Green Hill’s scale long enough to get a reading: 130 pounds. Mike’s weight loss was a mystery. He ate a lot, hour after hour, day after day. Perhaps it was the persistent diarrhea, or continually being in motion, or something else. All the basic tests—blood, urine and stool—had been given more than once, and nothing showed up to answer either the question of why weight loss or why diarrhea.
Mike remained amazingly strong given his low weight. He also showed no signs of being in pain. My main concern was that he not be in pain. An earlier major concern was that he not be fearful, or agitated, or anxious, but there’d been no solutions to those problems and at this stage, I doubted there would be.
By mid-April, Mike’s weight was down to 124 pounds. Elena insisted that the scale was inaccurate. That was possible, maybe even likely, but it showed a trend. Elena told me, “He’s gaining weight. He’s getting fat around the middle.”
“Really?”
“Yes. I shower him every day. Sometimes two or three times a day. He is gaining weight around the middle.”
On the next round I caught Mike and rubbed his belly. There was a slight pooch at his waist, sort of like the very early stages of pregnancy.
“Getting a beer belly?” I asked.
Mike smiled and walked on.
His pooch was not high enough for a distended liver. At least I didn’t think so. But I wondered, wouldn’t he someday experience the sort of organ shutdown that got Karen Carpenter? How much more weight could he lose and still carry on?
On the lighter side, Elena called to Mike, “Come here. Show Marilyn” (pronounced Mary Lin) “your nails.”
I followed as he walked past.
“Let’s see your hand,” I said, catching up and walking beside him. I held my hand out to him. He didn’t take it. Gently, carefully, I reached for his hand. Before he yanked it back, I got of glimpse of nicely trimmed nails.
“How did you manage that?” I asked Elena.
“Livia and Dorin helped. Easy. It was bedtime. He was very relaxed.”
I waited for her to say more. When she didn’t, I asked, “Did you give him trazodone?”
“No.”
“Valium?”
“No. No drugs. It was easy.”
Recalling the wrestling match four of us had the last time Mike’s nails had reached the length of Cruella De Vil’s, it was hard for me to consider “easy.” I pressed on.
“So how did you manage?”
“Just a little bit,” she said, holding thumb and index finger less than an inch apart.
She watched intently for my reaction. “In 7-UP. Just a little.”
It was then that I remembered the conversation she, Livia, and I had after the very difficult nail-cutting escapade back in February.
“Vodka?”
She nodded.
“Whatever it takes,” I said.
She held a finger to her lips. “Shhhhh.”
It was not only against regulations for caregivers to clip nails. It was definitely against regulations to dispense vodka. Elena was careful to follow the letter of the law, her livelihood held in the hands of licensing agency personnel. I did appreciate that, in times of desperation, she was willing to act beyond the proverbial box.
I was ever grateful for people like Elena and Sang. Even though our parting from Sang and Daniel was uneasy and strange, the care they gave Mike for more than a year was invaluable. Elena’s style of caregiving was very different from Sang’s, but she, too, was always on the job, practical, efficient, and affectionate.
Whenever I thought of Elena at work, I wondered how she could manage to do everything for three needy people when I had been unable to manage even for one. But after a walk, or music, or a glass of wine, I am comforted by the reminder that, given our own particular strengths and weaknesses, we all do what we can do.