'til Death or Dementia Do Us Part

by Marilyn Reynolds

  Emails back and forth had clarified certain details that had been confusing in conversations with Sang. During a visit early on in Mike’s stay at Sister Sarah’s, Sang and I had a long, one-sided conversation regarding various possibilities for the incontinence supplies I was to provide. On my way home I stopped at Target to buy what was needed, then, still in the parking lot, realized my head was spinning with possibilities. Sang had talked about Depends Adjustables, and briefs, Tena Heavy Protection and Always Discreet. I left Target without going inside, which is usually my natural impulse anyway.

  A quick email to Daniel had clarified things—Depends Briefs, M/L, best deal at Costco. Together, mostly through emails, Daniel and I had navigated the tricky details of ALW licensing and placement approval. Sometimes the emails we exchanged were simply book or movie recommendations. My hope on the morning after receiving such questionable “good news” was that Daniel could shed some light on this shocking turn of events.

  In response to my “I don’t understand. Can you enlighten me?” email, Daniel suggested I come talk to Sang in person. I asked what a good time might be, not wanting to show up for a conversation if there were other visitors. Sometime between 2 o’clock and 4 o’clock was the preferred time that day. At 1:30 I took four supermarket cookies from the stash I kept in the freezer, put them in a baggie, and drove to Orangevale.

  On the way to Sister Sarah’s I tamped down my anger with reminders of how amazingly good both Sang and Daniel had been with Mike—what excellent care he’d received there over the past year and a half. I reminded myself that they actually enjoyed Mike. They were lighthearted with him. They had been more than fair in establishing a monthly rate for me. I needed to stay open to whatever Sang had to say.

  Sang was always a fast talker, but faster still when she was nervous. As Mike looped past me, he reached for a cookie, took a bite, put it on the bookshelf as he walked past, took another bite on his next circle through, left it on the entry table, round and round, cookie after cookie, while I tried to make sense of Sang’s rapid-fire chatter.

  “We love Michael. Always put Michael first!”

  But she emphasized that Helen and Mike were a dangerous combination, also that Mike had smacked Ron the previous week, and that families have to know the place is safe for their loved ones.

  She started talking even faster.

  “Helen not even incontinent. Family pays $4,800 a month. Not about money! Not about money! You like Green Hill Care Home. Wait. You see. Beautiful, sparkling clean tile floors! Better than here! Citrus Heights. Little bit closer. Not about money! We love Mike! Have 30 days before move. Plenty time! October 4.”

  Sang pointed to the date already circled on the wall calendar, then started all over again. They loved Mike. He and Helen were dangerous together. Not about money. Not about money. Daniel was nowhere to be seen.

  Marg and I visited Green Hill Care Home. It was on level ground with a broad cement walkway leading to the front door. A border of straggly, water-starved plants lined the walkway. No hill. No greenery. Who names these places anyway?

  We met with the caregiver/co-administrator, Livia, whom we immediately liked. Livia, her mother, Elena, and a live-in helper usually shared caregiving and maintenance tasks, though because Livia was five months pregnant, she would soon be less available. Elena, Green Hill’s owner/co-caregiver, would take over the main responsibilities in a few weeks, when she returned from visiting family in Romania. Livia’s husband helped out before and after work, as needed, and would continue to do that. Their two boys, 9 and 11, were both were thrilled by the prospects of a new baby brother or sister.

  Green Hill itself was gleaming clean and much more orderly than Sang’s, though none of this would, we thought, make any difference to Mike. There were only two other residents, both women, and neither was ambulatory. It was highly unlikely that anyone would get in Mike’s way there. Livia assured us that Mike would be fine with them. It turned out that Sang had actually brought Mike to visit there a few weeks back, and Livia had been to Sister Sarah’s two or three times to see Mike at “home.”

  It seemed Sang and Livia had already established that Green Hill Care Home would be a good placement for Mike. Apparently Sang had been working on this for a month or so. However, Mike’s eviction from Sister Sarah’s would have been a less bitter pill to swallow had I been in on it from the beginning.

  Marg and I agreed that Mike might possibly do okay at Green Hill Care Home.

  The day after we visited Green Hill, I got a call that a nearby three-tiered facility, Winding Creek (again, no curves, no creek), had an opening for an ALW resident. I’d visited this place several times—early on when I’d first started looking at memory care facilities, and again when I realized that Mike’s situation at The Guiding Star was precarious. On each visit I was impressed with the director and with her empathy for dementia patients. She, Anna, assured me that they dealt with a number of FTD patients, and she was certain they could deal with Mike.

  Winding Creek’s fees for memory care were more than $6,000 a month, but they did have four ALW spaces. There was always a waiting list for those “beds,” though, and their own high-paying residents got first dibs when an ALW space opened up. I’d put Mike on their waiting list months before he was kicked out of The Guiding Star and now, miracle of miracles, Mike was next in line for the bed that had just become available.

  Mike had already been evaluated and approved by a nurse with the ALW program, but he also needed approval from Winding Creek’s RN. I was hopeful. We were all hopeful. The visit was scheduled for the next day.

  Mike was not on his best behavior when the Winding Creek nurse showed up. It was lunchtime, and everyone but Mike was eating around the kitchen table. When Mike walked by on his loop, he slowed down long enough to reach for Ron’s plate. Ron held on. Mike jerked the plate away and yelled, “Fuck you!” He took a few bites of sandwich, set the plate on the bookshelf, and walked on.

  When I talked with Anna later, she was apologetic. The nurse didn’t approve Mike’s application.

  “Ours wouldn’t be a good placement for him.”

  “But you manage with other FTD residents?”

  “I know. But your Michael is extreme.”

  The next morning I drove to Green Hill Care Home and gave Livia a check for $2,800 for Mike’s first month’s rent.

  On the morning of October 3, I picked Mike up from Sister Sarah’s and took him for a long ride, during which time Dorin, Livia’s husband, with help from Dale and Daniel, loaded up his van with Mike’s belongings and delivered them to Mike’s new room. Dale took some of the overflow.

  As I walked Mike to the car on his last day at Sister Sarah’s, Sang came close to me for a hug.

  “You love me!” she said. “I know you love me!”

  “Not exactly,” I told her, stepping back. “But I’ll always be grateful to you for all you’ve done for Mike and for the excellent care you’ve provided for him.”

  I opened the passenger side door. Mike got in and buckled up. He still buckled up. I got in on my side, checked to be sure the child lock was engaged, and drove away.

  2013

  Dear Mike,

  I wish you would stop walking your loop long enough to sit beside me on the couch at Sister Sarah’s. Sit and let me talk to you. I’d like to tell you that I’m sorry I was always a few steps behind in realizing the progression of your illness, expecting things from you that you could no longer give, being angered by your anger when you must have felt so lost and confused that anger was all you had left. I’m sorry I wasn’t more gentle with you when you refused to shower, or insisted on putting on your tuxedo for a nonexistent concert, or disappeared in the supermarket.

  I’d like to tell you that I’m sorry I couldn’t take care of you 24/7. Sometimes I look at Sang and think, if she can do it, with six residents, why can’t I do it just with you? But I couldn’t physically keep track of you 24/7, and y
ou were always angry, more angry with me than with anyone, I think, though you never smacked me the way you’ve smacked other caregivers. But here’s the other thing, too: I was becoming so worn down and depleted, it seemed that if there weren’t some relief, our kids would be losing not just one but both of their parents. No matter how hard I tried, I couldn’t make things better for you. There is a poem by Mary Oliver, “The Journey,” that tells of the narrator’s struggle to finally leave other demands behind, to move on, and to save the only life he/she had the power to save. I found wisdom and solace in “The Journey.”

  But although I’m no longer with you 24/7, I’d like to tell you that I will always watch out for you. I will always make sure you’re getting good care. I will always visit you, and bring you cookies, and check to see that all is well—as well as it can be, given the circumstances.

  I’m certain that even if you stopped looping long enough for me to say all of these things to you, the words wouldn’t reach you. But I’d like to say them to you anyway. I’d like the illusion of letting you know how I feel, how hard I’ve tried and am trying.

  I don’t think you would understand a word of such talk, but I’d like to say it all to you, anyway. As it is, the letters, another illusion, will have to do.

  Marilyn

  FOOT PROBLEMS

  October through December 2013

  When Sang got Mike dressed in the mornings, she’d always put shoes on him. By mid-morning, though, he was usually barefoot.

  “It okay, honey, no fight with Mr. Mike over shoes.”

  He had several pair of shoes at Sang’s, but the shoes he was wearing the morning we took him to Green Hill were worn-out red sneakers that were not his. I rummaged through the clothing in his “new” room to find another pair of shoes and, with the help of cookies and cajoling, we managed to get him to sit still long enough to take the old shoes off. He took his socks off on his own and resumed his loop.

  The brief glimpse I got of his bare feet was shocking. They had apparently not been washed for some time. Mike always looked clean when I visited him at Sang’s, but how could his feet be so dirty if he was being showered daily? Worse than that, his toenails were grossly overgrown and ringed by dried blood.

  “Not good,” Livia said. “We’ll work on his feet this evening, when Dorin can help.”

  Livia was quite attentive to Mike and turned out to be good at figuring out what worked best for him and what didn’t. Her husband showered Mike in the mornings. She said Mike loved Dorin. There was no telling whether or not he missed Sang and Daniel. The secure yard at Green Hill was much smaller than Sang’s, and although Mike’s loop was shorter than before, he seemed to have adapted to the new space. By the end of the first week, Mike was sleeping in his bed, usually from around 10 at night until 4 in the morning, when he got up and started walking. At Sang’s Mike only wanted to sleep on the couch, and even then his sleep was more sporadic. So far, things were better than I had expected.

  Shortly after the move, I stopped by Sang’s to pick up some papers I’d forgotten on moving day. Sang gave a lengthy monologue justifying/explaining why Mike needed to move and why the new place was a good choice. I still felt that I was not getting the whole picture. I am not likely ever to fully understand the sudden need to move Mike, but it was senseless to stew about that. They took Mike on when he was in an extremely difficult phase and managed him with respect, grace, and humor. I needed to appreciate that, even though I would continue to be confused by the sudden eviction.

  The feel of the two places was quite different. Sister Sarah’s was always clean enough. Green Hill was consistently spotless. At Sister Sarah’s, Mike could wander through the kitchen whenever he wanted. The refrigerator was secured shut with a latch, as were many of the cupboards. But the ones that were not Mike-proofed he could open and rummage around in, sometimes grabbing a handful of crackers, taking a few bites, depositing them here and there along the way.

  At Green Hill, Elena didn’t want Mike in the kitchen and, shortly after he moved in, she blocked both entrances to the kitchen with something akin to child gates, but harder to open.

  At Sister Sarah’s, Sang handed food to Mike as he walked through on his loop, or sometimes left food on one of the shelves where he himself often deposited food. He ate continuously at Sang’s. At Green Hill, Elena wanted Mike to eat at the table with the rest of them, at regular mealtimes. She might put a bowl of Cheerios within reach, or a stack of crackers on a plate, but “real” food was offered at set mealtimes, at the table.

  When Elena led Mike to the table, he would sit long enough to take a huge bite of whatever was there, then get back to his loop. He would, though, walk past the table for more food until it was gone. He would also, fairly often, grab food from someone else’s plate. It seemed he was ravenous, even though at both places his food intake was prodigious.

  He weighed 190 when he left The Guiding Star. He was around 160 when he entered Green Hill.

  Two weeks after Mike moved in, he hit Sandy, the live-in caregiver. She told Livia she couldn’t work with Mike and quit on the spot. She gave no notice, just walked away. As difficult as the immediate loss of help was, Livia took it in stride. Within days she’d hired another live-in caregiver, though it would be two weeks before that person could start. Livia had worked with this person before, and thought she’d do well with Mike.

  Every move required a new doctor’s report, so before the 30-day time period passed, Livia and Dorin took Mike to a 7:30 doctor’s appointment with Dr. Weston, his new doc. Livia had worked with Dr. Weston with other residents and felt that he was responsive. We had no real connection with the Medi-Cal doctor Mike had been seeing for the past year or so, so the shift was easy. Dr. W. was closer, seemed thorough, and understood that we would not be treating anything except for comfort and pain relief, so he was an okay match.

  When they saw the doctor, Livia asked to try Mike on Paxil. They’d had good responses with that drug with other residents and were hoping to find something that would have a calming effect on Mike. He had recently been slightly more agitated than usual, shoving Elena when she was trying to clean him up, sometimes purposefully banging his arm against a doorjamb as he went through. He continued smacking anyone who got in his way or who tried to get him to do anything. Apparently increased agitation is sometimes the case during the first few weeks adjusting to Paxil, before the more desired result kicks in. I didn’t have much faith in anything helping to calm Mike, since we’d tried so many things in the past, including Paxil, to no avail. But, of course, I was willing to give it a try if Livia/Elena thought it could help.

  Sharon came for a quick overnight to visit Mike in the new place. He was, very briefly, overjoyed to see her.

  In the fall of 2011, in my other life, I had signed on as a volunteer with 916 Ink, a fledgling nonprofit dedicated to increasing Sacramento youth literacy through creative writing. My first and second semesters of volunteering consisted of 12 weeks of three-hour stints, on Fridays, at a local charter school. The official teacher with whom I was volunteering was one of those bright, caring, energetic, creative teachers that, if cloned, could fix all of the nation’s shortcomings in education. Having taught high school English for 22 years, I had my own bag of tricks. But I learned a whole lot from Teacher B, especially in the realm of how to prime the creative juices of unconfident writers. Not only that, it was great fun.

  During the course of the 12 weeks, students wrote poetry, fiction and creative nonfiction. They then chose a few of their favorite pieces and, with the help of an official editor, they worked on revision. Their works were then published in a professionally produced anthology. There followed a book release party, with readings, sales, and autographs. It was amazing to watch the transformation of mostly shy, doubtful writers into confident published authors.

  Because my heart is with the underserved, and because I’d done some work with Sacramento Juvenile Hall residents some time back, I w
as able to start a 916 Ink program at that facility. For that work I would receive a stipend from the county office of education. It was not enough to bridge the negative gap between income and outgo, but it could add a few extra months to the hit-rock-bottom timeline.

  In mid-October, shortly after Mike’s move to Green Hill, I’d written in my journal:

  I’m feeling good about the recent work I’ve done with the Juvenile Hall girls. Their writing is not sophisticated, but it’s honest and raw, and I think the book will turn out well. After a break of a month or so I’ll start with a group of boys.

  It’s good to expand my horizons and to have more on my mind than Mike, Mike, Mike. Not that I want to ignore him, but to think about him only 12,573 times a day, rather than 16,840, doesn’t really lessen my concern. And to focus 4,267 daily thought-times on incarcerated girls offers a break in the thought-streaming. Also, they like knowing that I think about them even when not in their presence. It can’t hurt.

  That first book, Caught Up, offered a real boost to the writers. For some, it was the first time their voices had ever been valued. For others, seeing their work in print was a vote of confidence. I’ve since been a part of the publication of three more books from Juvenile Hall, and one from students, mostly on probation, in a group home.

  As heartbreaking as it is to witness young lives in such disarray, I love seeing these writers grow in skill and confidence.

  In late October, Elena returned from her extended family visit in Romania. Her English skills were more limited than Livia’s, and her accent more pronounced, making communication with her more of a challenge. But, as was true of Livia, it was obvious that Elena was also strongly committed to making things work with Mike.