'til Death or Dementia Do Us Part

by Marilyn Reynolds

  A few days after our Fairfield visit, Daniel emailed to say he and Sang would like to meet with me again. When I showed up the next afternoon, they told me they’d talked things over. They were dedicated to Mike. They thought he was better off with them than he would be elsewhere. I agreed. They decided they would like to keep Mike at the current rate of $3,200 for the next six months. Daniel said they wanted to see “what good might happen with Mike here. We can re-evaluate at the end of six months.”

  Even though the Fairfield facility made sense financially, Mike was doing relatively well with Sang and Daniel. Another move would be a crapshoot. Then there was the distance. Relieved, I called James to cancel our hold on the room at Fairfield.

  Daniel called Dr. O’Connor regarding Mike’s chronic diarrhea and also his volatility. He said they talked at length and that Dr. O’Connor had asked that Sang and Daniel FAX him regularly with details of Mike’s daily actions. Perhaps a change of meds was in order.

  Trazodone, Depakote, Lipitor, and Zyprexa were among the array of drugs Mike was taking when he moved to Sister Sarah’s Care Home. By that time I was not paying as close attention to his drug regimen as I had in the past. As far as I could see, nothing made much difference. An increase in the dosage of Depakote shortly after Mike moved to The Guiding Star might have lessened his outbursts for a while. Zyprexa calmed him for a while. Whatever calming effect such drugs might have, though, were short-lived.

  At the top of the list of many of Sang’s strongly held opinions was her take on drugs—the fewer, the better. None was best. Most people would probably agree with that in theory, but in practice we generally take the prescribed blood pressure medication to diminish the likelihood of a stroke. Or we resort to medicating our insomnia. Or we take pain meds because of a bad back. Then there are the antidepressants and heart regulators. But unlike most of the rest of us, Sang, was a woman who held fast to her convictions.

  On our first visit, before we’d even moved Mike in, Sang had told us how when Ron first came there he slept all of the time. “Even when he wake, he fuzzy. Too fuzzy! No talk!” she said. She went on to say how she’d gradually weaned him off all drugs.

  “Look at him now! You look at his bright eyes when you go back out.” She was obviously proud of her accomplishment.

  Daniel said Ron’s family thought Sang was a miracle worker.

  After the first few weeks of Mike’s stay, Sang had asked, “You trust me?”

  “I do trust you,” I said. “You’re doing a great job with Mike.”

  “Okay,” she said, lowering her voice a few decibels below her usual cheerleader volume. “Little bit. I take little bit, slow, slow, get Mike off too many drugs. Don’t tell. Okay?”

  I didn’t have to think long before I gave her the go-ahead. I’d seen enough of her work with Mike and also with the other residents to see that the wisdom of her instincts and intuition went beyond the usual caregiver approach. Although Sang didn’t have the medical or academic background that Rachel had, she was equally keen in her understanding of her charges. Not only that, but Sang was on the job 24/7. Literally 24/7. Marg called Sang “crazy saint.” That seemed an apt description.

  Sang repeatedly reminded me that this slow reduction of Mike’s drugs was to be kept in strictest confidence. Their license could be revoked if her dose-altering practices were to be revealed. They could also have their license revoked for cutting Mike’s nails, something that regulations demanded be done either by family or an RN rather than a designated caregiver. Mike was still mostly able to cut his own fingernails, though he sometimes needed help with the nails on his right hand. I gave Sang my full approval to offer help with his fingernails when needed and also to cut Mike’s toenails. My approval was nothing when weighed against official regulations, though.

  Dr. O’Connor was also of the “less is better” school of drug use. In one of Daniel’s fax reports to Dr. O’Connor he’d mentioned a persistent twitching of Mike’s right wrist whenever he walked or stood. This had started several months ago when Mike was still at The Guiding Star. The twitching stopped when he used his hand to hold onto a glass or pick up a fork, but when his hand wasn’t in action, the twitching resumed. This was possibly related to FTD, but it was also a possible side effect of Depakote.

  Interestingly, the possible side effects of Depakote are surprisingly similar to the symptoms of FTD: confusion, trouble sleeping, anxiety, changes in patterns and rhythms of speech, restlessness, problems with memory, etc., etc. Depakote was prescribed as an anti-seizure medication. As with many of the drugs Mike either was or had been on, there seemed to be some difference in his behavior when he had first started taking Depakote, but not much and not for long.

  When Dr. O’Connor learned of the hand twitching he decided to cut back on the Depakote dosage. That seemed to make a slight difference, though “slight difference” was hard to quantify.

  I don’t know how much of this was done on Dr. O’Connor’s orders and how much was Sang’s personal doing, but within five months of Mike’s move to Sister Sarah’s, he was down to just one anti-anxiety drug, Seroquel. He was off all of the drugs he’d been on when he left The Guiding Star: Trazodone, Depakote, Celexa and Lipitor.

  “Michael brighter now—not foggy,” Sang said. “Too many drugs before. Not good.”

  I didn’t see any difference in Mike’s brighter/foggy state, but just on general principles I was glad to have him off such a large assortment of powerful pharmaceuticals.

  My feeling was that Mike’s level of brightness vs. fogginess was generally random, related to the havoc within the chaos of his FTD-afflicted brain. Whatever the cause, nothing was predictable. Usually he greeted me with a quick smile and hug, barely pausing in his counter-clockwise loop through the house, around the yard, and back through the house. Usually he smiled at me when he came through again. At other times he might pause and look at me as if I were a stranger, or he might peer at me, intently, for several seconds, perhaps trying to figure out who I was.

  Months into his stay at Sister Sarah’s, Mike continued to lash out at residents and they were generally afraid of him. Ron called him “that big guy” and tried to keep his distance. The others, two wheelchair-bound women and the sleeper never crossed Mike’s path so they were safe. Well, relatively safe. Mike did slap the hand of one of the women when she held onto a plate of food that he was trying to take from her.

  Then there was Helen. She also walked around outside, though not with such a distinct pattern as Mike’s. Helen often was outside when I drove in, and she always offered a pleasant greeting as I got out of the car. “Did you bring them with you?” she might ask with a smile, or “Can I have the roses now?” or some other short question that meant nothing to me but something to her. I usually responded, “They may be here later,” or “I’m sorry, I forgot the roses.” She would nod, as if satisfied with my response, then walk away. But she walked. And Mike walked. And they each assumed they had full right of way no matter where or when. If they both arrived at the front door at the same time, neither gave way. Sang was always on the job, and Daniel was there often, but as alert as they were, Mike and Helen sometimes reached the same place at the same time unnoticed.

  I knew from Sang’s reports that Mike had on more than one occasion pushed Helen out of his way, and that Helen had, more than once, shouted insults at Mike, but it wasn’t until an afternoon in early May that I got to witness the Mike and Helen Show first hand. Mike, on his usual loop, had just passed me in the entryway. Helen opened the front door to come in just as Mike was on his way out.

  “No!” he shouted and shoved her aside.

  “You goddamned son of a bitch!” she yelled after him.

  Without the slightest pause in his trajectory Mike yelled back, “Fuck you!”

  By that time, Sang was standing with an arm around Helen’s shoulder, calming her as she led her into the kitchen, away from Mike’s path. I met Mike as he came through the
back door.

  “How’re you doing?” I asked, moving in beside him and following along.

  “Fine!” he said, still sounding angry. He continued to walk toward the front door. I fell behind, giving him full access to the doorway.

  With Helen eating a snack at the table, and Mike walking his unobstructed pathway, I returned to the kitchen where Sang was preparing dinner.

  “It okay, honey,” she said to me, referring to Mike and Helen’s altercation. “We make it work. No worry.”

  By mid-May, Mike had taken to going shirtless. Shortly after Sang dressed him in the mornings, he would take his shirt off. She’d help him put it on again. He’d take it off. He’d also stopped wearing shoes.

  At Sang’s request I wrote a note for her to keep on file, saying that I understood that Mike often removed articles of clothing repeatedly during the course of any given day, that this was one of many behaviors common to victims of FTD, and that Sang was in no way negligent in attending to Mike’s dress. It was important for Sang to have this statement on file for the sake of a drop-in visit from a licensing monitor.

  For months I’d been making phone calls and filling out form after form to get Mike approved to enter an Assisted Living Waiver facility, and also getting information on what it would take for Sang and Daniel to become licensed as an ALW facility. My greatest hope was that Sister Sarah’s Care Home would soon be ALW-certified, and that Mike’s fees there would be covered, or at least partially covered.

  The first several months Mike was with Sang and Daniel, he would often sit on the couch for an hour or so and watch TV, but then he became too restless even to do that. So he walked. And walked. Morning, noon and night, he walked. The fairly frequent diarrhea was an ongoing problem. Lashing out at other residents was an ongoing problem.

  Although Mike never sat at the table for more than a few minutes, he was eating all of the time. Sang handed him food as he walked past the kitchen. Pieces of sandwiches, pieces of cheese, healthy finger foods. For food that required utensils and a plate, she’d leave a plate of whatever they were having for dinner, plus a fork, on the entryway table and Mike would help himself to a bite as he passed by. Sometimes he’d move the bowl to a bookshelf in the living room, or to a side table by the couch, but he’d always come back to it, seldom leaving any food uneaten. He was eating constantly, but he was also steadily losing weight. When he left The Guiding Star, he weighed about 190, down from the 223 pounds he’d weighed when he first entered. Now with the scales at 181, he was probably at his ideal weight.

  The tremor in his right wrist came and went. There were a few puzzling times when Mike leaned to his right at an extreme angle, walking bent and crooked. This might last for a day or two, then he’d straighten up again.

  I saw Mike every week, as did Marg. Sharon came when she could, usually at least once a month. Matt managed to get down three or four times a year. Although his visits weren’t weekly, Dale was on call as needed. And Dale was a constant backup for me, helping with a myriad of daily tasks, including beautifying my new apartment patio with plants—in the ground, in pots, in hanging baskets. Mine was the most colorful patio in the whole compound.

  Through it all Sang was, indeed, a crazy saint. She talked a mile a minute, showed off her muscles, wanted hugs almost as a sort of punctuation. She made Norman Vincent Peale look like a grump. She cooked tasty and healthy meals. The residents were always clean and well-groomed and she kept the house clean. She oozed confidence, never doubting that she knew what was best for her charges and that she could provide them with the best possible care. She often told me that she could keep Mike through to the very end. She could work with hospice. If there came a time when he needed oxygen, or a colostomy, or was wheelchair-bound, she could take care of it all. That was reassuring.

  Sharon and Subei planned to visit one Friday about six months into Mike’s stay there. It was a school holiday for Subei, but not for Lena. Sharon offered her the choice of going with them to visit Grampa or going to school. Lena, who was then in a thankfully short-lived phase of not liking school, chose Grampa. I hated to have the grandkids see Mike as he was, but I also hated for them not to see him, and for him not to see them. He always lit up when he first saw any of them, and although his pleasure may have lasted only a nanosecond, it did seem to be pure pleasure.

  This was the girls’ first visit to see Mike since we’d moved him from Porto Sicuro. It was my practice to call ahead when I visited, and on this day Sang met us in the driveway as we got out of the car.

  “Beautiful!” she said to Subei. “So beautiful. Give me a hug!” She opened her arms to Subei and Subei complied. “I love you!” Sang told her.

  She then turned to Lena. “Beautiful lady! Give me a hug!” Lena held back. “Come on! Hug!” Sang said, walking close with her arms out. Lena gave a half-hearted hug and walked on. Mike came out on his loop and gave a big smile when he saw us. He stood still long enough to get a hug from each of us, then, still smiling, he walked on.

  We went inside and met Mike coming back through. Sharon always brought a treat for Mike, and on this day I think it was chocolate chip cookies. He paused in his loop long enough to take a cookie from her outstretched hand, then walked on. Sharon watched with tears streaming down her cheeks.

  We watched more loops, heard Sang’s report of Mike’s behavior, eating habits, and their progress, or not, in dealing with his chronic diarrhea. Helen came in from outside and gave Sang a big, toothless grin.

  “Oh, Helen! Not again?” Sang said, half laughing. “Go back and find your teeth. You’ll need your teeth for that good cake you like.”

  When Helen went back outside, Sang said, “She bury her teeth in the yard now. All the time, bury her teeth.”

  Helen came back inside, empty-handed.

  “Come on, Helen. Show me,” Sang said, leading Helen back outside.

  After a few more loops, a few more offered cookies, we were ready to make good on our promise to Lena of a stop at an In-N-Out Burger. As we stood in the driveway, saying our goodbyes, Sang gave out hugs, telling us she loved us. Lena again held back. Sang again insisted.

  “A hug, beautiful lady!”

  As we drove away, Lena allowed as how next time she’d stay in school.

  “I know,” I said. “It’s really hard to see Grampa like this.”

  “It’s not Grampa. It’s that happy, hugging, Sang woman!”

  Sang was, admittedly extreme, but I preferred happy and hugging for Mike to anything I’d seen elsewhere.

  GOOD NEWS?

  September 2013

  After several setbacks in the ALW licensing process, Sang and Daniel finally got all the required items signed off by the licensing agency. There were no big problems with the licensing, just time-consuming tasks that had to be completed before they could be officially designated an Assisted Living Waiver facility. The caregivers, including Sang’s sister, her son, and anyone else they might call on for occasional help, all had to be fingerprinted. Even though they’d all had TB tests when Sister Sarah’s first opened, they needed to be tested again. The automatic gate opener needed to be upgraded to meet new fire department standards, etc., etc.

  It was months after Mike was officially okayed as a potential ALW resident before Sister Sarah’s license came through, but what a relief it would be to finally get some financial assistance. It seemed that all was in order, but then, oops, although all of the requirements had been checked off, the man who actually issued the licenses retired, and there was not yet a replacement. Phone calls weren’t being answered. It seemed there was no place to turn. Carol Kinsel jumped in to try to move things along, but none of it was easy. I kept hoping, month to month, that there would be a shift.

  I was getting closer to rock bottom. The bankruptcy procedures were finished, and I’d come away from that as clear as anyone could from bankruptcy. It stopped the nasty phone calls and letters, but that didn’t do anything to ease my ongoin
g monthly money challenges. It seemed within reason that Mike’s residential care expenses might soon be at least partially alleviated through the ALW program or through some aspect of Medi-Cal, but in the meantime I was still paying out more than was coming in month after month after month.

  Early one September evening, after being out running errands and grocery shopping, I settled in to get caught up with email and paperwork tasks. There was a message from Daniel to call Sang. “Good news,” he wrote, saying I could call as late as 1 in the morning.

  I got my hopes up for the good news to be word that Sister Sarah’s Care Home had received the official ALW license. I called Sang.

  “Good news, honey! I found very good placement for Mr. Mike!”

  She went on in her mile-a-minute style. A hundred dollars less each month. The woman running the place had even more experience than Sang did. Sang knew this because they’d worked together a few years back, before either of them had opened their own facilities.

  I was stunned and could hardly process the “good” news. Sang had all kinds of justifications, insisting that this would be best for Mike.

  After an abundance of miscommunications, what I was left with was that Mike and Helen were becoming more combative with one another and that there was a risk of someone being hurt during one of their tussles.

  I was reeling. My confusion and worry soon turned to anger. Whatever happened to “It okay, honey, we make it work. No worry!”? Or to Sang’s frequent and seemingly heartfelt assurances that they were dedicated to taking care of Mike through the very end?

  After a worried and sleepless night, I emailed Daniel to ask for clarification.

  As I sat waiting for a response, still stunned by the news that Mike must leave the place where he’d received such good, enlightened care, I looked back over my email correspondence with Daniel. Over the course of a year, from late March 2012 to early April 2013, there were 48 emails from Daniel. Those were only the ones I’d saved. My guess was that Daniel and I had consistently had email contact three to four times a week. He sometimes sent a video of Sang and Mike “dancing,” or photos of Mike outside by the roses.