With guidance from Marg, I managed to get Mike connected with hospice care. He didn’t meet the hospice “six months to live” criteria, but, because of his steady weight loss, he did fit the “failure to thrive” category. On that basis, Mike’s doctor was willing to make a referral. Hospice took his case for 90 days, after which they would re-evaluate. The advantage of hospice care was that they provided added support—a weekly visit from a hospice nurse, visits with a social worker, and plenty of expert guidance. They would send a home health care worker to Green Hill three times a week. With Livia being less available because of the baby, and given their frustrating, fruitless search for a live-in caregiver, Elena needed all the help she could get. (Hospice also provided incontinence supplies, a savings to me of around $100 per month.)
While Mike was officially under the care of hospice, if there was an emergency, the folks at Green Hill would first call hospice rather than 911. Hospice would then make the decision about the next call. I knew they would avoid heroic measures. Without hospice, Green Hill would be required to call 911 given any emergency such as a fall or signs of a stroke. My biggest concern over that regulation was that, with the 911 rush to a hospital, in the heat of the moment, Mike’s Physician Orders for Life-Sustaining Treatment that called for no heroic life-saving treatments might not be honored. The completed order was in his file at Elena’s, ready to be handed off to any 911 responders. But I had heard too many horror stories of someone mistakenly being hooked up to a breathing device, or feeding tube, and the family then being unable to remove the devices. I didn’t think any of that would be willful, but once the deed was done, it was not always possible to undo it. We could avoid such a dilemma with hospice on the job. They would assure that Mike be kept pain free, without any “heroic” measures. I didn’t expect Mike to qualify for that program beyond the 90-day period, but it was good to have hospice on board for however long that could last.
At San Gabriel High School, the school where Mike taught music for 15 or so years before he retired in 1995, a ninth-grade “English Learner” teacher uses my books in his classroom. He’s working to help his students develop a reading habit, and it turns out they’re captivated by the stories in my Hamilton High Series. I heard about this from a district curriculum director who’d been at the conference I’d attended in February. Through her efforts, an author visit was arranged, and in May I made a quick trip to Southern California to talk with Mr. D’s students. Though only a very few teachers remained from the days when Mike was there and when I was a frequent visitor, the campus still had a familiar feel to it.
I love talking with young readers about my books, the life of a writer, what they’d like to read about next, or anything else that comes up. All of the students in this group of ninth-graders, mostly Vietnamese, though a few Latino/a and Hmong, had read at least one of my books and several had read three or more. Two girls were adamant that I should have ended the novel If You Loved Me differently. We batted around other possible endings, I made a case for the ending as written, and all in all it was a lively, thought-provoking conversation.
During a break between presentations, the principal came in carrying three bulging albums he’d pulled from the archives, saying he thought I might like to have them. They chronicled choral events from 1987 to 1990. This principal had only been at SGHS for four years, so obviously he hadn’t known Mike. Still, he somehow made the connection. I appreciated the gesture, though in reality I’d not been longing for more pictures. Nevertheless, a quick perusal of the albums reminded me of Mike’s amazing accomplishments with young singers. After so many years of the diminished Mike, it’s good to occasionally come across such reminders.
After I returned from Southern California, at the urging of the hospice nurse, Elena and I agreed to try Mike on an anti-anxiety medication. This was an effort to calm Mike so that he wouldn’t be up and down all night long, and so he might be more manageable with showers and other basic hygiene needs. The results were what those of us who knew Mike expected. He became even more agitated than usual. After three days we went back to no meds.
As had been the case to one degree or another over the past four years, Mike continued to smack caregivers as they tried to shower him, dress him, or sometimes just be within reach. He continued to yell, “Fuck you!” whenever he was irritated, and he was often irritated. Until this time, Mike’s physical and verbal aggression had been limited to caregivers. Then, sometime in March, that changed.
On one of Marg’s weekly visits, she caught up to the looping Mike on the patio. As always, he gave her a broad smile. He was carrying a CD, which he handed to her. When she took the offered CD, he smacked her hard on the hand. It was a quick smack, a sting that left no bruise or physical discomfort. But it took its toll. Marg, Mike’s ongoing, stalwart supporter—although she continued visiting regularly—was left feeling less connected to Mike.
Mike had never before lashed out physically at any family member. The old Mike would have been appalled by the very idea of hitting Marg. What a cruel ending for such a bright, funny, talented, warm-hearted man.
On May 25, Mike’s 74th birthday, I stopped at the market for more cookies and picked up a generic card for him. At Elena’s, after Mike’s first two cookie-grabbing rounds, I held the card out for him. He smiled, tore open the envelope, then set the card on one of the shelves where he often left things.
Subei had posted on Facebook a picture of the two of them, probably taken 12 or so years back when she was around 5. Mike was leaning against the kitchen island, on which sat flour, sugar, a big mixing bowl and other ingredients. He was beaming down at Subei, who was standing on a stool that put her in reach of the island top. She was holding a large spoon, her face smeared with what appeared to be chocolate, beaming back. Below the picture she’d written:
A happy, happy birthday to my dearest grandfather! Thank you for making me always feel like royalty, even when I wasn’t really acting like it. Now let them eat cake!
I’d taken my iPad to show him Subei’s picture and message. He gave it a quick glance and was on his way.
By early June Mike was down from 124 pounds to 120 pounds.
Toward the end of July, Mike’s Florida niece, Beth, was with us for a week. She’d visited every summer since Mike’s 2009 diagnosis. She and Mike had had a long, close connection. The changes she saw in him annually were much more dramatic than the changes the rest of us noticed on a more regular basis. For the first time Mike hadn’t recognized Beth when she greeted him. It was no longer obvious to me that he recognized me either—the signs of recognition had become less and less obvious.
Cindi came in from Reno for a few days while Beth was in town. Once again, the Dodsons’ place was party central, with dinners on their deck and plenty of levity in the midst of a shared awareness of loss and sorrow.
The day after Cindi’s arrival, she, Beth, and I, went to see Mike at Green Hill. We found him standing on the patio, peering in through the glass door that led from the patio/yard into the house. I rushed to the door, unlocked it, and let him in. Usually slow to anger, I was enraged. Why was the door locked? It was 90-plus degrees outside! How long would he have been locked out in the heat of the day had we not arrived when we did?
The person to whom I was ranting, a new caregiver, spoke very little English, though she did understand tone and body language.
We led Mike to his room where we tried in vain to engage him with talk of pictures on the wall, albums on the chest, a stack of cards in a basket. In the midst of this, the caregiver came in and handed me a cell phone with Elena on the other end. Elena was talking about an emergency, but, just as I’d experienced with Sang, when Elena was anxious or stressed she talked so rapidly I could only catch a word here and there. I couldn’t make sense of anything she was saying, but she definitely knew what I was saying. It was totally unacceptable to lock Mike outside at any time, even more so in the heat of a more than 90-degree day.
In truth, Mike didn’t seem distraught and was none the worse for wear. Nevertheless, to find him locked out on a Sacramento summer day was alarming. Although no place was perfect, and there were times I might have wished that Elena was a little less rigid, I had never before doubted that Mike was being well cared for at Green Hill. Besides keeping Mike locked outside, what else had been going on that I’d been unaware of?
An hour or so after we returned from that disturbing visit, Livia called to explain the circumstances. She apologized over and over. She knew that was unacceptable, it was the only time it had ever happened, and it would never happen again. What I sensed in both Livia and Elena was the fear that I would file a complaint. Such a situation could lead to the loss of their license, something that would turn their lives and the lives of their families upside down.
What had happened was that while Livia and her family were on vacation in Southern California, their house had been broken into and robbed. Since Elena was the contact person, the police had called her and asked that she come immediately to Livia’s house. Elena first said she couldn’t do that right then, but the police insisted. Although neither Elena nor Livia said anything about this aspect of the experience, I knew that insistence of police with an immigrant from Romania carried an implicit threat beyond anything many American citizens would have experienced.
Elena told the caregiver that she had to leave, but she’d be back as soon as possible. The caregiver told Elena, “If you leave, I leave. I’m not staying here with him [Mike] on my own.” I understood the dilemma and, to be honest, there had been times under my watch when, out of desperation, I’d traded safe practices for a few minutes of solitude, like sending Mike on errands when, in my heart of hearts, I’d known he shouldn’t be driving.
In following conversations, both Elena and Livia assured me that they could handle Mike and that they wanted to continue to work with him. However, they also often reminded me of how difficult he was and that his behavior had made it difficult to keep any help. The most recent caregiver, the recipient of my rant, walked out as soon as Elena returned from her meeting with the police. Three others before her had quit. I could see that the demands of caring for Mike were wearing them down. I didn’t know what would be next for him, but I needed to be considering other possibilities, just in case.
As a result of Leesa’s urging, combined with her organizational skills, early July found us frolicking in Sunriver, Oregon, on an extended family vacation. Sharon, Doug, Lena, Subei, Dale, Marg, Corry, Matt and Leesa, cousin Linda and her partner Barb, Cindi and I, hiked, lolled about, went to the river, kayaked, white river rafted, swam, ate, drank, told stories, played Scrabble, watched soccer and generally carried on. It was a weeklong, wonderful combination of people and activities, thankfully free of Mike-related emergency calls. I returned home, refreshed and renewed, ready to tackle whatever compelling tasks needed to be tackled. I wasn’t sure what those next tasks would be, but I was sure they would be.
As was expected, Mike was dropped from hospice care after 90 days. All of the people connected with hospice had been attentive and helpful, and I had particularly appreciated long conversations with Betty, the social worker, as she delved more deeply into possibilities of Assisted Living Waiver programs and other facilities that could offer some financial relief. Unfortunately, every place she suggested was closed to Mike because of his volatile behavior. If he had been wheelchair-bound, such places could deal with him, but because he was so mobile and strong, none of them would take him on. On her last visit to Mike, as his case was being closed out, she brought information on Priority Care, a behavioral health program that was connected with a local hospital.
“They sometimes have success with difficult patients,” she said.
“I don’t have much hope for that,” I said.
“Honestly, I don’t either,” she said. But there’s an outside chance, and it can’t hurt. Medi-Cal will cover it.”
I called the number on the card Betty left with me and set up a time for visits from the Priority Care psychiatric nurse and social worker. They completed an evaluation and the nurse recommended a new combination of drugs. That was tricky, though, because of Elena’s resistance to having Mike on meds of any kind. I could have insisted, but I didn’t want to go to war with Elena. She continued to assure me that they—mostly she—could manage Mike, but each time she reported that he’d smacked her or someone else, I saw that she was increasingly worn thin by his behaviors.
After a few weeks of visits and recommendations from Priority Care staff, we all realized that their attentions were exercises in futility, since, barring an out-and-out battle with Elena, there could be no follow through on Priority Care’s recommendations.
Mike continued walking, walking, walking. He’d walk outside, then immediately come back inside. He went from one room to the next, picking things up, putting them down, sometimes moving them into another room. Kate, the one who’d had a dog back when she was a human, had been quite upset that her precious family picture album had gone missing. Then one day, weeks after its disappearance, I found it tucked away in the bottom drawer of Mike’s chest.
Later in the summer of our Sunriver family vacation, Matt and Mika flew down for a short visit. Mike recognized Matt with a big smile and a quick hug, and walked on.
Between the two of us, Matt and I managed to get Mike to stand on the scale long enough to get a reading—115 pounds. Down five pounds from mid-June. He was apparently getting no benefit from the copious amounts of food he ate. He looked as if he were starving to death, and he ate as if he were starving, even going so far as to eat a hunk of foam rubber from a new patient’s helmet.
In addition to calling the doctor, who was not immediately available—“if this is a life threatening situation, hang up and dial 911”—I Googled “eating foam rubber.” It turned out there are people who crave foam rubber. Some went as far as to eat huge amounts of foam rubber from couch cushions. One woman confessed she was no longer welcome in a friend’s house because she “ate her couch.” I decided not to worry about the now seemingly small hunk of foam rubber Mike had ingested.
In my other life, before Subei returned to Kenyon College in Ohio as a sophomore, she came to my place for an overnight. We talked about anything and everything, ate Mexican food, went to Planet Earth Rising for a “spiritual adjustment”—an interesting experience neither of us expected to ever repeat. As part of an ongoing family tradition, we met Dale for breakfast at the Pancake Circus, a place with delicious waffles, vintage clown decor, and bad coffee. A perfect combination of send-off activities for my college sophomore granddaughter.
It was just after Labor Day when Mike, reaching for a cup of water, lost his balance and fell. He hit his head on the floor, gashed his head open, got up and kept walking. Livia called me immediately but my phone wasn’t turned on. Because of Mike’s situation I was diligent about keeping my phone on, charged and handy, but this one time …
Mike’s head was bleeding. He wouldn’t stop to let Livia see the extent of the damage. Livia called 911, EMTs came, and Mike was taken to the nearby emergency hospital. In the meantime, since she couldn’t reach me, Livia called Dale and Marg. By the time I thought to check my phone and checked my messages (about 20 minutes after Livia called), Dale and Marg were at the hospital with Mike. He was already in a small room, in a hospital gown, propped up in a hospital bed.
The wound on Mike’s head was not of a size or depth to warrant emergency treatment, but Livia and Elena didn’t know that when they called 911. By the time I arrived on the scene, Mike had been seen by a doctor and was scheduled for a CT scan. About half an hour after I got there, an orderly came to wheel Mike down to the wing where he would get the scan. I walked along with them and waited with Mike. He was loosely confined but could still swing his legs over the side of the gurney. “Not yet,” I kept telling him as I repositioned his legs onto the gurney. The CT showed no broken bones. The doctor said the gash would heal faster with two butterfly stitches, unless Mike was likely to pull them out. We skipped the butterflies.
The emergency wing of the hospital was extremely busy, a place definitely in need of more staff and more rooms. But the RNs, LVNs, doctors and orderlies, were all quick, competent, pleasant and friendly.
The examining doctor strongly recommended that Mike spend the night in the hospital for observation. But why? It was miserable for Mike to be confined in a hospital bed, unable to walk around freely, and it was also miserable and difficult for us to keep him in the bed. When the admitting doctor came to complete the paperwork for Mike’s overnight stay, I told him we weren’t going to do that. After trying to talk with Mike a bit, and watching us trying to get him to stay in the bed, the doctor agreed with our decision. I signed the release papers, which he approved. Dale and I took Mike back to Green Hill, while Marg returned home to get back to whatever she’d been doing when they got the call.
Livia and Elena did what they needed to do in calling 911, but life would have been easier for everyone had that call not been made.
Immediately after the hospital escapade, I requested that hospice reassess Mike in the hopes that, as before, he would qualify on the basis of his ongoing weight loss. Again Mike was approved because of his “failure to thrive.” Next time, if there was a next time, hospice would make the 911 call decision.
By the end of that September, Mike’s nails again needed major attention. Although the previous clipping had gone fairly smoothly, he’d been more agitated than usual during the following day. Elena and Livia were reluctant to use the vodka helper again. But when I mentioned the nail dilemma during a routine doctor’s visit, the nurse practitioner said, “We can cut his nails. It won’t be pretty, but we can do it.” I made an appointment for the following week.
Marg and I met Livia and Mike at the office. As requested, I brought my own nail clippers. Mike sat in a chair. I sat on his lap, gripping the back of the chair in an attempt to keep him from bolting. Livia sat at Mike’s left, hanging onto his left arm and hand to keep him from batting the clippers away. Marg worked at holding Mike’s right arm and wrist secure, and the nurse practitioner struggled to clip his nails. She was right. It wasn’t pretty. There was a lot of struggling—a lot of bucking and jerking around. Finally, though, the deed was done.
As frantic as Mike was during the process, as soon as he was released from our bondage, he seemed as fine as he ever seemed those days.
“That’s a job well done,” I told him, smiling. He nodded and smiled back as he opened the door to wherever his feet would take him next. The experience of fighting him and holding him down stayed with the rest of us for far too long, but I didn’t think that was the case for Mike. We were all relieved to have the nails taken care of for a while, but the ones who dealt with Mike daily, physically, were particularly relieved to be free of scratches for a while.
By mid-October, Elena and Livia’s desire to see Mike on his way had become a frequent topic of conversation. Green Hill had three new residents, two of them mobile with walkers. With those additions Mike had to be watched even more carefully. He’d already hit one of the new people as she made her way from her chair to the dining room.
“Too much,” Elena said.
I couldn’t blame her, and I appreciated not getting a 30-day ultimatum, but finding another place became even more urgent than when the main issue was “only” the ongoing money drain. With Janell, the new hospice social worker on the job, our search for a Medi-Cal facility was re-energized.
In my other life, I was thrilled that New Wind Publishing had reissued all 10 of my “True-to-Life Series from Hamilton High” books with fresh new covers and a new dedication to getting the books into the hands of high school students. Between the recession, the diminished promotional efforts of my previous publisher, and the responsibilities for Mike’s care, my recent involvement in conferences for educators was negligible. That fall I was invited to speak to a group of school librarians. These librarians are mostly unsung heroes in the fight for literacy. They maintain and add to collections that appeal to readers of all levels and interests. They deal with efforts at censorship with courage and integrity, and with high rates of success. I jumped at the chance to be part of their upcoming conference.
Just moments after I’d agreed to their offer, I wished I hadn’t. I was rusty. I was old. I was dull. But, except for divorcing my first husband, I never break an agreement, so I plunged forward.
It was gratifying to reconnect with librarians I’d known in the past, and to meet new ones. To hear what new books teens were gravitating toward (still a lot of vampires), and to learn that the Hamilton High books continued to draw readers. Since the very first book, it has never ceased to thrill me to hear a story of how one of my books was the first one a student had ever read, and how he/she came begging for more, and I heard that more than once on that occasion. For a few hours my mind and heart were lifted beyond the heartbreak of FTD, and the emptiness of my once full-of -life husband. For a few hours I didn’t worry about money or the uncertain and necessary move from Green Hill. I wanted more such times.
In person, Janell visited numerous local facilities and a few that were not so local. The ones she didn’t visit in person she contacted by phone. When I told her how much I appreciated her perseverance, she brushed it off, saying that because she was new to the area she needed to familiarize herself with as many memory care facilities as possible. It turned out that the only place in Sacramento that would consider taking an ambulatory patient with Mike’s behaviors was North Point, the place we had considered before placing Mike at Sister Sarah’s. North Point was large and institutional, housing about 170 patients. It served not only those with dementia and/or physical disabilities—it had a number of younger patients suffering from PTSD, and others with mental illnesses that made it impossible for them to live in more open settings. Through a combination of therapy, behavioral modification and drugs, they managed a wide range of behavioral difficulties. I was hopeful that something might finally be done to alleviate my poor husband’s ongoing, severe anxiety.
Mike would be in a room with two to four others. His caregivers would be on a rotation system—very different than dealing with the same two people every day, as he did at Green Hill. On the other hand, North Point had two doctors and a psychiatrist who visited regularly. And although they tried to keep drugs to a minimum, they were experienced at prescribing and adjusting meds to deal with behavioral issues.
I’d been reluctant all along to have Mike in a less personal setting, dealing with a wide variety of caregivers rather than the same one or two he saw daily. But he now seemed less and less aware of his surroundings. I wondered if, at this stage, such a change would make much difference to him. I knew it would make a difference to me, going to visit Mike, walking down a wide hall lined with people strapped into wheelchairs, some slumped, heads as low as they could go, asleep or nodding off. Others, also strapped into wheelchairs, were calling out for help, or for Mommy, or for some other person known only to them. A few walked the halls. Some were quite pleasant. Many were distraught.
North Point’s saving grace was the gently affectionate way that staff interacted with residents. The director seemed to know everyone by name, and he exchanged greetings with each person as he led the way down the hall to his office.
I was slowly coming to terms with the likelihood that Mike’s next placement would be in a highly institutionalized setting. Within a few days of my North Point visit, Dale, Marg, and Sharon, all at different times, took the tour. Matt flew down from Walla Walla so he, too, could weigh in on the place again.
It was during another two martini cocktail hour that we accepted what seemed to be inevitable. None of us wanted to move Mike into North Point, but the only other places that might possibly take him were of the $10,000-a-month luxury memory care ilk. As it was, at $3,200 a month, I figured I had less than a year to go before every last penny of the remaining retirement account was used up. Then what? Even though I was an active, healthy 79, a return to full-time teaching didn’t seem feasible. Three hours a week for 12 weeks at a time with a juvenile hall unit, plus preparing that unit’s writing for publication, was one thing. Preparing for and teaching five high school English classes five days a week, plus reading and commenting on somewhere around 175 essays each week, was another. That task was tough enough at the age of 30. Besides, what principal in his/her right mind would hire a 79-year-old with so many teachers in their 20s and 30s looking for work?
We comforted one another that the North Point staff was warm and friendly, and it didn’t smell too bad. From the comfortable, well-appointed Guiding Star, with private rooms and baths, with tasty food served in a spacious dining room, through the funkily but cheerfully decorated Sister Sarah’s, to the more sparse but squeaky clean Green Hill, to North Point’s drab, institutionalized hallways with rooms shared by up to six patients, our requirements and expectations had, out of necessity, changed. North Point was a no-aquarium, not-even-a-fishbowl place, and we would be lucky to have Mike there.
As I drifted off to sleep after martinis, and dinner, after shared sadness and loss and resignation, the thought crossed my mind that the money drain might be checked, that the red figures at the end of each month might possibly turn to black. It was just a fleeting thought. Given my recent failed experiences with the waiver program and subsidized housing, I knew better than to court dreams of eased finances. Good thing.
In theory, North Point would accept Mike, but in practice there was roadblock after roadblock. For one thing, Mike would be entering under a hospice plan. North Point had only eight hospice beds, and they were all taken.
Janell, the hospice social-worker gem, called North Point regularly to check on availability and to remind them of Mike’s needs. She, the hospice nurse, and one of the hospice directors, met with the admissions director. Hospice even offered to provide on-site in-service training, with a focus on caring for Mike. The admissions director was impressed.
When a hospice bed opened, we expected it to be Mike’s. But the North Point executive director was concerned that hospice would decertify Mike, leaving him unfunded. The hospice nurse, doctor, and social worker visited Mike and recertified him. Now at 112 pounds, he continued to meet the “failure to thrive” category.
With the threat of decertification removed, we assumed that the newly available hospice bed to be Mike’s, but oops—North Point needed a lab test to show that Mike’s diarrhea was not the result of a C. diff (Clostridium difficile) infection. The hospice doctor was sure that Mike did not have C. diff, but was nonetheless obtaining the test.
Then I got word that, based on Mike’s behavior, the North Point staff had decided that they couldn’t manage him. His unpredictable lashing out, his practice of taking food from others, his consistent, angry, physical resistance to showers, nail clipping, shaving, or any other physical hygiene efforts, all combined to bar him from the place that had seemed to take everyone. The director claimed that his hands were tied. It was a staff decision that included the director of nursing and caregiver representatives.
Hospice again met with the director of admissions, but North Point wouldn’t budge. It seemed there was no facility in the greater Sacramento area willing to take Mike given his present behavior, and, because of Green Hill’s concern about Mike’s possible falling, we couldn’t try him on any anti-anxiety drugs while he was there unless I hired someone 24/7 to be sure he didn’t fall. It was financially impossible for me to provide 24-hour care for Mike. So we couldn’t try to get Mike on an effective anti-anxiety drug while he was there. And facilities that can manage drug treatment wouldn’t take him as long as his anxiety had him acting out. And although the Green Hill folks hadn’t given us an eviction notice, it felt as if it were just around the corner.
It was inevitable that Mike would continue to lash out at other residents and caregivers. Also inevitable that sometime during such an incident, Elena or Livia, whomever was on the job, would realize she absolutely could no longer deal with Mike. Janell pointed out that the next desperate step would be for Elena/Livia to call 911 and tell them that Mike was beyond their capacity to control. He would be hospitalized. He would be frantic in the hospital. It would be impossible to reassure and calm him. He would have to be restrained. With both Green Hill and North Point closed to Mike, we would have no options for placement. The hospital would have to find the next place for him. It was sure to be a step down even from what North Point had to offer, and it would likely be in another county.
What a long, terrible, humiliating leave-taking Mike was suffering through.