'til Death or Dementia Do Us Part

by Marilyn Reynolds

  Still, Mike’s present state of being was absolutely heartbreaking, and things could only get worse. But he was in a clean, well-managed, stable environment, and although I was thinking of him, sad for him, worried about him every hour of every day, I no longer felt the burden of the day-in, day-out physical care that his condition had required. My financial situation was dismal, but at least the ordeal of bankruptcy was over.

  Jerry and Mike had always exchanged cards, sometimes letters, for birthdays and Christmas, and occasionally spoke on the phone. Jerry continued the practice of cards and letters, even after those communications no longer seemed meaningful to Mike. Although Jerry had reached a stage where he hated travel, he made the trip from Florida to visit Mike shortly after the move to The Guiding Star. He was distraught over Mike’s worsening condition and, in letters, emails and phone calls, he often expressed his frustration over not being on hand to help out. “If there’s ever anything I can do … ” was how he ended every communication. After years of expressing his frustration at not being able to help, of expressing his sincere desire to help, I wrote a letter to Jerry and Jackie, saying that what I most needed at that time was financial help. I said that Jerry had been an amazingly loyal and steadfast brother, and that would remain true whether or not he could offer any kind of financial aid. I said I was writing rather than calling so he and Jackie could talk things over. I didn’t want to put him on the spot. The day he received the letter, he called, asking if $400 a month would help. Of course, it would. Perhaps this is just a rationalization on my part, but I think the contribution of $400 a month was also helpful to Jerry, in that he was providing specific, ongoing help for his brother.

  A few weeks into my time at the Cadillac Reserve, having taken Sunny for her morning walk along the levee, put the breakfast dishes into the dishwasher, perused and answered email, I sat at my desk, mindlessly gazing out the window, barely noticing the grass-lined, winding pathway that separated my group of apartments from the apartments across from mine. I turned to the tasks at hand—a blog entry that needed editing, a letter of response regarding an inquiry for a school visit, a phone call to Medi-Cal. In the afternoon I would join two friends for a $20 reflexology session. I was slowly finding a life.

  ON THE VERGE OF EVICTION

  July 2011 through February 2012

  It was a year of ups and downs. Mike wore that now familiar blankness with some random spark occasionally pushing through. He was gradually needing more help with things. He was more frequently incontinent. He sometimes needed help getting dressed. He needed more supervision for showers. Each of these changes added points to the standard residential care assessment chart. More points meant higher fees. If Mike were at any other comparable facility, we would be paying at least $1,000 more. Rachel sometimes mentioned that the administrator had talked with her about bringing our monthly payment in line with the Porto Sicuro fee assessment practices. I was already in the red every month as it was, gradually draining the last of our IRAs. Rachel knew of my financial challenges and, although the possibility of a fee increase was sometimes mentioned, it didn’t happen.

  Would long-term care insurance have helped? Some. Would veteran’s benefits have helped? A lot, but neither of us were veterans. Would money have been easier if we’d not both opted for early retirements? Yes. How about if the economy had not tanked? How about if we’d never used credit cards? These and a truckload of other questions occasionally flitted through my mind, but they didn’t linger. The task at hand gave more than enough fuel for thought—to accept the things I could not change, etc., etc.

  Even though Mike needed more assistance than he had when he first moved into The Guiding Star, he had calmed down considerably. There were still occasional outbursts, but they were short-lived and less frequent than earlier on. A few of the caregivers took a special interest in him and seemed to genuinely like him. One in particular, Scott, went out of his way to learn about Mike’s earlier life. He asked about Mike’s previous interests and brought in specific pictures, books and DVDs in hopes of engaging him.

  Scott once asked me if Mike liked birds. I told him of the two parakeets, Bass and Treble, he’d kept in the choir room at SGHS. They’d been a gift from a parent and became choir mascots. Mike was good at delegating work, so along with having a student in charge of taking role, organizing music, and keeping track of robes, someone was always in charge of feeding and cleaning up after the parakeets.

  “I could bring in a parakeet!” Scott said. “Would it be okay with you if I brought a parakeet in for him? I’ve got a cage and everything.”

  I allowed as how Mike might like that and encouraged Scott to give it a try. He seemed very pleased with the possibility, but after Mike’s room had remained birdless for several weeks, I asked Scott if he still planned on bringing one in.

  He shrugged. “Regulations,” he said.

  “Well, nice try. I appreciate that you care, and that you’re paying attention.”

  “I love Mike,” he said. He turned to Mike. “We’re buddies, right, Mike?”

  Mike nodded his head and gave Scott a big smile.

  There were other caregivers who connected easily with Mike, one in particular who was pregnant. Mike loved babies. If a friend or fellow singer was pregnant, Mike always wanted to know how she was feeling, when she was due, if she knew whether the baby was a boy or girl. Such questions were beyond him by the time he got to The Guiding Star, but I thought his cooperation with that one caregiver may have had to do with her pregnancy.

  Over time I saw a little less of Rachel. That was as it should be. Early on in her role as memory care director, Rachel stayed in one of the Porto Sicuro apartments just a block or so across the driveway from The Guiding Star section. She slept with a walkie-talkie on a table beside her bed, making herself available 24/7.

  “I can’t rest until I’ve totally reinvented this place,” she once told me.

  There was that, being new on the job and wanting to make big changes. The other reason for her apartment stay was that she’d been in a nasty accident with her Sterling convertible, and the car not only needed body work, it needed a new engine. She was waiting for a friend to find and install a rebuilt engine. She and the wrecked car were ensconced at Porto Sicuro for months, but finally the car was fixed, the staff had all been hired and trained by Rachel, and she moved back to her own place in Sacramento. Although I no longer saw Rachel every time I visited, we remained in close email contact.

  It was my custom to check Mike’s room whenever I visited, see that he had clean clothes, switch from summer shirts and pants according to seasons, and to return whatever purloined books, cards and pictures he’d added to the stack of things he routinely schlepped around.

  On one visit, probably in the spring of 2012, Mike’s bathroom was filthy. Ten or more dirty cups were on the sink, the basin was grungy, and the floor was sticky with urine. Rachel was not in her office, so I complained to the housekeeping supervisor. She was apologetic but said Mike sometimes lashed out at the housekeepers. They were afraid of Mike and didn’t like to go into his room.

  “He’s not always in his room.”

  “Well, no, but he’s often in there in the mornings when they clean,” she said.

  “The condition of his room is downright nasty. It certainly wouldn’t pass any kind of official inspection,” I pointed out.

  “I’ll get someone down there.”

  I emailed Rachel about the situation.

  “Not acceptable,” she wrote back. “I’m on it.”

  The next time I visited, Mike’s bathroom was spotless.

  It was around the first of the year that I registered that it had been longer than usual since I’d seen Rachel. Scott paused a moment, then said, “She has a lot on her plate right now.”

  The following week I sent an email to tell Rachel of an upcoming doctor’s appointment for Mike. It was returned as undeliverable. When her work email came back, I tried
the home email address she’d given me shortly after Mike moved in. That also came back.

  By mid-January 2012, The Guiding Star had a new director, Kyle, who was friendly and nice. I never learned what happened with Rachel, though my guess was that it had to do with not managing the administrative side of things very well. She was great with patients, but her desk was always piled high with undone paperwork. Or maybe it was simply that Rachel was a rolling stone. Whatever it was, I was sorry to see her go. No matter what her administrative faults may have been, she had been totally dedicated to making things work with Mike.

  In a journal entry dated January 31, 2012, I’d written:

  Mike was in bed when I arrived yesterday morning. One of the caregivers said they’d tried to get him to have breakfast, but he wanted to stay in his room. He was awake, dressed, and lying in bed. There are two comfortable chairs in Mike’s room, but I’ve never seen him sitting in either of them. When I turn the TV on for him, I sometimes suggest that he might be more comfortable sitting in his chair to watch TV. He always remains in bed.

  “Did you have breakfast?” I asked, knowing he hadn’t.

  “Pancakes,” he answered.

  Matt had sent a postcard of the Getty Museum, telling of his recent trip to LA. I read it to Mike and showed him the picture. Following Rachel’s advice, I’m careful not to ask, “Do you know where that is?” or “Do you remember?” I pointed to the picture on the card. “That looks familiar,” I said.

  “The Getty,” Mike replied.

  I happened onto an arts channel with a wide range of presentations and chose a symphonic orchestra performance. I was distracted by checking Mike’s bathroom for cleanliness, looking through the closet to be sure he had clean clothes, adjusting the thermostat. When I took my place in the chair beside his bed, the symphony had shifted to a ballet, which was holding Mike’s attention. “I wonder what ballet that is?” I asked.

  “Swan Lake.”

  Maybe so, maybe not. Next up was Peggy Lee singing “Why Don’t You Do Right?” “I always get her mixed up with Kay Starr,” I said.

  It’s amazing how many tricky but non-threatening ways there are to ask a simple question.

  “Peggy Lee,” Mike said.

  “Oh, yeah. We saw her at The Pasadena Playhouse. They brought her out in a wheelchair, but she could still belt out a song.” Mike smiled at that.

  He dozed. I took some paperwork—always there’s paperwork—to a table in the living room and set about filling in the blanks. After a while, probably not more than five minutes, I saw Mike near the entrance. He’d put his shoes on and was carrying Matt’s postcard. He looked in my direction and I waved at him. “Shall we go now, hon?” he asked.

  “Sure. Let’s have lunch first.”

  I led Mike to the dining room where they’d started serving lunch. I had a cup of soup with him. Once he’d started on his salad and seemed intent on eating, I assured him I’d see him soon and gave him a quick goodbye kiss. He barely looked up from his food, but by the time I was pulling away from my parking space at the curb, he was punching the key pad at the entrance, trying to get out. He looked up. I waved. He waved back then watched me leave. He was so dejected. Such a sad sight. He vacillates from knowing almost nothing to being fairly aware. Neither state is easy.

  The day after this journal entry, Kyle, the new director, sent an email telling me that Mike had been extremely agitated, violent and aggressive after I’d left. He’d sworn at Kyle, then punched him in the arm several times.

  He set a meeting time to “discuss how we move forward in Mike’s best interest.” Stanley, the facility administrator, would be joining us. I was relieved that Marg was available to go with me to the dreaded meeting. Both her personal and “nursely” insights are invaluable, and her own brand of backup eases the way. I was afraid we were going to hear that they could no longer manage Mike and that we’d have to find another place for him. I dreaded the prospect of moving him, though I knew it might be just around the corner.

  Marg and I sat in the office listening to Kyle and Stanley’s account of Mike’s most recent behavior. They expanded on what I already knew from Kyle’s previous email. Tuesday afternoon (the day of my most recent visit) Mike had punched Kyle in the arm several times, fought with a resident, and kicked Mrs. Fitzgerald’s dog. All these actions were accompanied by shouts of “No!” and “Fuck!” and “Fuck you!”

  They reviewed Mike’s care needs. When he entered The Guiding Star just slightly over a year ago, he was at their designated Level 2, which even then was giving him the benefit of the doubt regarding how much he could/would do for himself. He now needed help bathing and dressing. His increased incontinence, coupled with occasional bouts of diarrhea required more housekeeping and hygiene services.

  I couldn’t quarrel with their assessment, but an increase in fees added urgency to completing the Medi-Cal application process. On the advice of the elder attorney, I’d been working toward getting Mike approved for Medi-Cal coverage, spending hours on multiple phone calls trying to reach the appropriate case worker, getting an “original” Social Security card for Mike to include with the application, getting official notices of yearly benefits from CalSTRS and from Social Security, making copies of last year’s state and federal income tax returns, etc., etc. Medi-Cal offered no advantage over our regular Blue Shield insurance plan except that, under some rare circumstances, it would pay for residential memory care—another slim thread of hope.

  After meeting with Kyle and Stanley, Marg and I went to Mike’s room. He was in bed but got up and followed us to “his” table in the dining room. I showed him the valentines I’d brought for him to sign for the grandkids. Until two years ago, Mike never missed sending them all valentines. One at a time I told him who each card was for and gave it to him to sign. He smiled at the mention of each name and wrote something, sort of, on each card. Mostly what he wrote was illegible. But it was a pleasant activity, and I thought that maybe I should always bring cards for him to sign. I later added my own notes to the valentines and sent the cards on their way.

  We took Mike to the patio where Marg managed to help him clip his fingernails. When that task was finished, we followed Mike back inside. He took a seat in the living room where other residents were involved with Wii golfing. We each kissed him and told him goodbye, but he didn’t take notice of our leaving. Although that indicated less alertness, it was easier than having him trying to leave with us, or standing sadly at the door as we drove away.

  February 2016

  Dear Mike,

  When was it? Late 2008? Early 2009? It was before your FTD diagnosis, but well into your growing loss of executive function. I was still hoping that a change in meds might bring some improvement, and I suspected that Dr. Carlson was taking a scattershot approach to prescribing various drugs. Not that she was negligent or uncaring, but psychotropic drugs were not her area of expertise. Dr. Bertoli helped me get you set up with Dr. Hess, a psychiatrist whom she held in high esteem. He was officially not taking on any new patients, but as a favor to Dr. Bertoli, agreed to see you three or four times—however long it took to evaluate your meds. I drove you to the first visit and spent the hour reading in the waiting room. You came out with a new prescription and careful written instructions on how to start the new med gradually while also gradually cutting back on the old.

  You saw Dr. Hess every two weeks or so during this period. Unlike the reputed practices of many psychiatrists, Dr. Hess was not simply a pill dispenser. On our way home from those visits you would tell me of your talks with him. It sounded as if you were telling him the same stories you’d taken to telling everyone, repeatedly, over the past few years—details of your baptism, your mother’s craziness, your molestation by an older man who ran a dance school, etc., etc.

  At one point, a month or so into your connection with Dr. Hess, you interpreted instructions for a new med to mean you were to take it twice daily. I was sure the instr
uctions indicated a dose of only once a day. A call to Dr. Hess’s office clarified that the dosage was indeed meant to be taken once a day. I asked to sit in with you at the next session, to which both you and Dr. Hess agreed. I began seeing Dr. Hess regularly with you, asking the questions I knew you were unlikely to ask, or, if you did ask, to remember the answers.

  Eventually, as you became less and less able to follow a conversation, or to provide any accurate information, or to stay in one place for any length of time, I stopped taking you to Dr. Hess and began seeing him on my own. Our conversations centered on you and your condition, and also on how I was managing both practically and emotionally. Now, six years later, I continue seeing Dr. Hess. During the worst of our times, I saw him every week or two. The intent listening he offered, coupled with questions that led me to a deeper reflection, somehow strengthened me for whatever next step I was facing. It was good to talk with someone who could be an objective listener.

  These days I only see Dr. Hess every four to six weeks, but even though my life is much more stable now than it was a few years back, I still find our sessions to be beneficial to my overall emotional health. Other than Dale, for whom I am ever grateful, there are no men in my life that I can share any in-depth, soul-bearing conversation with. Although as a professional, Dr. Hess doesn’t exactly qualify as a friend, our conversations get beyond the level of chit-chat. I appreciate that.

  All of this was a too-long introduction to what I really wanted to tell you, which is of a recent experience in Dr. Hess’s waiting room. The music was calm and melodic, offering a nearly unnoticed backdrop to my attempts to recall details of a puzzling dream I wanted to relate to the doctor. Then came a burst of choral music, the tenor voices so powerful and clean, that I was struck by an image of you, in your tuxedo, on the risers, singing with the Master Chorale. I thought I had put to rest the longing for the you that used to be, but I was suddenly filled with such a great emptiness—so immediate and piercing that it nearly took my breath away. What is it the British say? Gobsmacked?