'til Death or Dementia Do Us Part

by Marilyn Reynolds

  He shakes his head no.

  It’s impossible to know how much or how little Mike understands, but I must at least try to let him know what’s happening.

  Marg calls Dale to say we’re about 15 minutes away from Sister Sarah’s. They want another 45 minutes.

  Sharon suggests we stop for a latte. As soon as she says it, we all know how ridiculous that would be. Mike can’t stay in one place for more than a minute or two. We’re going to take him into a Starbucks?

  Maybe a drive-through? But as soon as the car stops, he’ll get out. We decide to see more of the sights of Orangevale. When we get to Sang’s street, we turn in the opposite direction of the facility. We drive slowly past a small park where some moms are pushing little kids in the swings. We drive slowly past a high school. Slowly around another block. We drive slowly toward Sister Sarah’s Care Home. Marg calls Dale to ask that someone be watching for us to buzz us in so we won’t have to sit waiting at the gate. That works.

  Sang meets us at the front door. “Michael!” She extends her hand to him. “I’m Sang. I’m your new friend.”

  Mike shakes hands with Sang. “Oh, very good handshake! You very handsome man.”

  Mike stands smiling, watching Sang.

  “Come see your room. Very beautiful!”

  Dale and Matt meet us in the entry way. They greet Mike with hugs. Mike follows Sang down the hall to the last door on the right. We follow Mike. The room has a familiar look—same bedspread, family pictures on the wall, Mike’s Aunt Ursie’s antique lamp. There are still more pictures to hang, but we can do that later. The room already looks like it’s Mike’s.

  After 15 minutes or so, seeing that all is relatively well, Dale and Marg go home. Matt, Sharon and I stay for another couple of hours. We walk outside with Mike; we talk with Sang and Daniel. Ethel, one of the women residents, seems taken with Matt and follows him around for a while. I sit with Mike at the table while he eats a piece of cake.

  “Little bit chocolate. Little bit sugar. Lots carrots and zucchini.”

  Across the table from Mike, Ron is also eating cake.

  When he’s finished with his cake, Ron turns his attention to me.

  “When are you going to kiss me?” he demands to know.

  I laugh. “Never,” I tell him.

  “But I thought we were engaged,” he says.

  “Nope. See this guy over here?” I say, putting my hand on Mike’s shoulder. “He’s my husband.”

  “He’s big,” Ron says, then leaves the table.

  The man who I now know is “John” is asleep on the couch.

  “He sleep a lot,” Sang says. “Very tired.”

  Sang says to Mike, “You my friend? We friends, right?”

  Mike smiles and nods.

  “You handsome guy! You know?” He smiles and nods again.

  Matt, Sharon and I leave around 4 in the afternoon. Later we have dinner at the Dodsons’. We start with our traditional pre-dinner martinis, just one apiece tonight. Marg has again done her kitchen magic—baked salmon, tasty garden fare, garlicky mashed potatoes. Dale’s made a lemon-blueberry tart, from scratch. The move went more smoothly than any of us dared imagine. We are celebratory. And worried.

  After dinner I take a deep breath and call Sang. Mike had eaten dinner and was now in the living room with the others, watching TV. Whew!

  The morning after the move, about 5 o’clock, I drive Matt to the airport. Once back home I sit on my hands to keep from calling Sang too early. She’d said mornings were very busy. Best not to call before 10. I walk Sunny, do a little cleaning, and pay a few bills until, finally, the clock says 10.

  Sang answers and I, with some apprehension, ask how Mike’s doing.

  “I give two thumbs up!” she says.

  “Really?”

  “Yes! He very happy with me! When I help him in shower, I sing ‘You Are My Sunshine.’ He not sing a single word then, but after he sing with me and Daniel.”

  “Really?” I ask again, having apparently minimized my vocabulary to one word.

  “He have good voice! We record DVD for you.”

  Sang tells me Mike went to bed around 11 when she and Daniel did, slept all night, got up for breakfast, then went back to bed.

  “He know where everything is—his room, the bathroom, everything. He fine, honey! You go get something you like eat. Put your feet up. Read book.”

  On the afternoon of my next visit, Mike is at the table eating what appears to be a jelly sandwich and drinking a glass of milk.

  “Hi, Mike,” I say, pulling a chair up next to him.

  “Hi, Marilyn,” he says, smiling broadly.

  At our most recent visit to the doctor, when Dr. O’Connor asked Mike if he knew who those two ladies were who were with him, Mike said, “Marilyn and Marg.” But today is the first time he’s actually spontaneously said my name during this past year.

  Sang joins us at the table and tells me that Mike has had a bit of diarrhea this morning. The jelly slathered on bread is masking something to combat this tendency.

  Earlier at breakfast, Ethel tried to talk to Mike. Sang could see that Mike was getting irritated, so she found something on the other side of the room to interest Ethel. “I read body language,” she says.

  Daniel shows me the video he took yesterday evening—Mike and Sang singing “You Are My Sunshine,” and another bit of Mike and Sang dancing. Mostly Sang was the one dancing, but Mike was smiling.

  As I pull into Sister Sarah’s driveway one day the following week, I’m surprised to find Mike sitting behind the wheel of Daniel’s truck, parked in the driveway. I open the door on the driver’s side.

  “Going somewhere?” I ask.

  “No.” Mike says, keeping his hands on the steering wheel and gazing out the windshield as if watching for traffic. I leave Mike in the truck and go inside to talk with Sang.

  “Mike’s in the driver’s seat of Daniel’s truck,” I tell her.

  “That okay. No keys.”

  She catches me up on how things have been going. She says that instead of trying to get residents to conform to any particular schedule, she watches to see what develops naturally. She says Mike’s developing a pattern. He generally gets up around 7, has a cup of tea or something light, then goes back to bed until 10 or 11. Then he has more to eat and is up for the rest of the day. In the afternoon Sang may keep Mike’s door locked for a while to encourage him to be out and about with the rest of the them.

  I’ve brought another pair of pajamas for Mike, and as I carry them toward his room, Sang follows.

  “Don’t worry—his bed not made,” she says, then tells me that if things seem to be becoming tense between Mike and another resident, she asks him to come help her, leads him into his room and they make the bed together. By the time they go back to the living room, the mood has changed. Later, she rumples his bed again so it will be ready for the next distraction.

  I’m amazed at how well things are going with Mike at Sister Sarah’s. Do I think there’s going to be trouble ahead? Yes. The very nature of FTD means there is always trouble ahead. But what a sweet respite we’re having.

  UPS AND DOWNS AT SISTER SARAH’S

  February 2012 through September 2013

  Sang and Daniel, along with Sang’s 17-year-old son, Ronnie, live on the premises. Ronnie has his own basement “apartment,” but he takes meals upstairs and in the afternoons is often at the dining room table doing homework. On rare occasions Sang and Daniel hire another caregiver, usually one of Sang’s sisters, for a short night out, but that’s a rare occurrence. Daniel maintains the building and grounds and is around for backup in the early mornings and evenings. But because he has his own contracting business that specializes in remodeling jobs, some small and some more extensive, he’s often on a job during the day. Sang is on the job 24/7. I don’t know how she does it. I couldn’t, but I’m glad she can.

  Daniel laughs when he tells
me it’s thanks to the recession that he’s got a lot more time to help at home. But he says when he’s out on a job and it gets close to 5, he’s eager to get back. “I want to see what the kids have been up to,” he says.

  Both Daniel and Sang seem to genuinely like Mike. “We’re buddies, aren’t we Michael?” Daniel often says, to which Mike usually gives a faint smile and nods his head. Sang says, “Today you a 10, Mr. Mike! I give you two thumbs up!” When one or the other of them put their arms out and ask for a hug, Mike opens his arms to them.

  Mike has developed a pattern of walking in a loop, out the front door, around the side of the house, into the back door, through the living room, down the hall, out the front door, etc. etc. I’m glad he’s got room to roam here. I no longer have to deal with the pacing caged tiger vision of him that haunted me for so long.

  Although the larger, upscale facilities such as The Guiding Star are more appealing to the eye, and tout programs for socialization, physical stimulation, music therapy, a caring specially trained staff, etc., etc., the care Mike received at Guiding Star was not nearly as personal and individualized as at Sister Sarah’s. One of the problems at the Guiding Star was that Mike had to deal with different caregivers every day—changing shifts, staff turnover, vacation times, etc. Some of the Guiding Star caregivers knew and liked Mike, and could generally manage him. Others, though, didn’t like Mike, were afraid of him, and inept when it came to managing his behavior. At Sister Sarah’s it was Sang and Daniel, mostly Sang, all day, every day. It turned out that the smaller setting was a much better set-up for Mike. Really, it was a better set-up for me, too. Unlike the larger place, whenever I called Sister Sarah’s to ask about Mike, whoever picked up the phone knew exactly what was going on with him and could give a full report without trying to find his chart.

  During his first month at Sang’s, Mike didn’t hit anyone. Not once. Then one month to the day, he suddenly starts lashing out again. He hits Sang when she’s showering him. But, ever cheerful, she tells me, “That okay! No problem, honey! He not hurt me! Just bam, bam, bam, but not hard!”

  He hits residents if one or another gets too close to him. That is a problem. Being totally incontinent now, Mike’s farther along the assessment scale than when we first moved him in. The new monthly fee is $3,200 plus another $100 for incontinence supplies.

  After many months of filling out form after form, and providing copies of last year’s income tax return, and waiting for an hour and a half at the Sacramento County Department of Human Assistance to be interviewed by a social worker, and then providing the W-2 forms and income statements from Social Security that had not been requested earlier, and signing an “I Am Not a Liar” paper in the presence of a notary public, finally, Mike is officially approved for Medi-Cal with no share of costs. I’m not sure if that will offer any financial relief or not. It would have had we chosen North Point, but Medi-Cal doesn’t typically cover care provided by six-bed residential facilities. I’ve heard of a pilot waiver program that may cover a few such facilities, but Sister Sarah’s Care Home is not part of that program.

  A side note here about the Department of Human Assistance. The people who work there are doing a tough job, seeing a steady stream of needy folks all day long, day after day, many of them who’ve not brought in the right paperwork or haven’t understood the forms. One of the Human Assistance workers was polite and treated me with respect, but my general experience was one of being treated with grumpy condescension, as if I were nothing more than a brainless number. If dealing with Human Assistance is a humiliating experience for me, a well-educated native English speaker, how much worse it must be for the Colombians, the Vietnamese, the Mexicans, the Ukrainians.

  Given my income after paying for Mike’s care, I fell into the poverty category. Maneuvering the Medi-Cal maze I was in gave me added insight and empathy into the lives of the truly impoverished.

  Basic lab tests, blood panel and stool sample had not revealed the cause of Mike’s ongoing bouts of diarrhea. No matter how Sang worked with Mike’s diet, diarrhea had become a near daily occurrence. The ongoing incontinence and chronic diarrhea required a higher level of care than at first anticipated. Sang and Daniel arranged a time to meet with me and talk about about Mike’s increased needs. Following the standard assessment criteria, they said, the fee for someone with Mike’s needs was around $4,200. They needed to raise their fee to stay in line with that assessment. The new payment would start in six weeks.

  “That’s a big, sudden jump,” I said.

  I told them I had absolutely no doubt that their care was worth every penny of that, but I didn’t see how I could manage it.

  The next time Marg visited, Sang went over the fee assessment with her, how they hadn’t factored in Mike’s consistent incontinence or chronic diarrhea when we came in at the base rate. Sang showed Marg a picture of a shit-smeared floor where Mike’s mess had leaked from his Depends.

  “You see? I clean! Every day I clean! It okay! My job! No place else do this for what Marilyn pay.”

  As a hospice nurse, Marg was familiar with the assessment charts. What Sang was asking was not unreasonable, given the circumstances. Marg told Sang the same thing I had. Their care was certainly worth $4,200 a month, but she knew my financial situation, and I simply would not be able come up with that amount on a monthly basis.

  I called Carol Kinsel to get contact information for the Fairfield place. She thought that would probably be the best match for Mike if he couldn’t stay at Sang’s. She also suggested we check out St. Anthony’s, which was a waiver program facility closer to home than Fairfield. I made appointments at both places and, because the world of memory care and assisted living was a small world, I called Sang to tell her I’d be looking at other places. I wanted that information to come from me, not through the local residential caregivers gossip network. I told her my all-time first choice of a place for Mike was with her, but I couldn’t manage $4,200 a month.

  Sang was upset. “Nobody take care of Mike like I do!”

  “Right. I wish he could stay with you for the duration, but it’s just not possible at $4,200 a month.”

  “I thought you happy with me!”

  “I am happy with you. It’s been so nice to have Mike in a place where people actually like him. I hate the thought of moving him again.”

  On my next visit Sang asks, “You find better place than here?”

  “There is no better place than here! This is the place I want Mike to be, but look, this is how things are for me.”

  I take the tablet and pencil from the counter. I write down Mike’s take-home pay from his CalSTRS retirement, then mine. Mike’s net Social Security, then mine. The total comes to $4,370. “At $4,200 I’d be left with $170 a month to live on. How could I manage that?”

  “Ron’s family pay $4,200 and he not even incontinent!”

  Now I want to hit her bam, bam, bam!

  As Mike walks past the kitchen on his loop Sang says, “You very handsome today! Gimme a thumbs up!”

  Mike smiles and sticks up his right thumb. She hands him a quarter of a sandwich from a waiting plate. He takes a bite as he walks out the door.

  “He don’t sit very long, honey, but no problem. He get plenty food this way.”

  In truth, except for breakfast when Mike might sit briefly to slurp cereal from a bowl, nearly all of his food intake occurs on the run. That, and whatever he can glean from the two kitchen cupboards that are accessible to him.

  By the time I am ready to leave, Mike has had six of those pieces of sandwich. He’s eaten two or three. The others he’s taken a bite from, then put down on the bookcase, or the table in the entry, or maybe somewhere out in the patio.

  “He remember,” Sang says. “He come back for it.”

  As if on cue, Mike picks up the sandwich piece as he passes the bookshelf and pops it into his mouth. He is so much better off here, where Sang has adapted to his preferences, than he w
ould be at a place with set mealtimes and table arrangements. I don’t even want to think about moving him, but what can I do?

  St. Anthony’s was big, with set mealtimes, and they couldn’t deal with volatile behavior. The Fairfield place was a possibility, though. Cheerful. Plenty of secure outdoor space. The director, James Franklin, was confident they could work with Mike. They were not on the waiver program, but he said they worked with people according to their budgets.

  “He doesn’t do well with set mealtimes.”

  “I don’t either,” James said, laughing. “We have windows of time for meals, but if someone misses that window, they can always go to the kitchen and get whatever it is they missed.”

  I liked James. I liked the place. The hour drive each way didn’t appeal to me, but I thought Mike might do okay there. I made another appointment with the director for the following week, so Sharon and I could visit together. She, too, liked the director and the facility. There was a vacancy in the memory care unit. The monthly fee would be $2,200. “How high might that rate go if Mike turns out to need more care than he does right now?” I asked.

  “That rate will stay the same for the duration of his care,” James said. “It will be secured in your contract.”

  Sharon and I stood talking in the parking lot. We agreed that this could be an option. It would be a hellacious drive during peak traffic hours, but not bad if the timing were right. The monthly fee was much more realistic for me than I was currently paying at Sang’s, and a huge contrast to what their increase would be.

  Sharon left to pick Subei up from a soccer game. I went back inside and asked James if he could hold the spot for Mike for a few days.

  “Sure,” he said. “We’ll hold it for a week.”

  I thanked him and drove back home, wondering how it would feel to make this same drive once or twice a week—more often when the inevitable other problems arose.