“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 Hamil
ton 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 whil
e 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.
THE OAK TREE POST-ACUTE CARE CENTER
2014
November. The Monday after the family Thanksgiving gathering at Dale and Marg’s, Janell called to suggest that I visit the Oak Tree Post-Acute Care Center in Sacramento. She’d talked with the director who expressed a willingness to accept Mike. They had Medi-Cal beds available. Months earlier, having looked online at the Oak Tree’s ratings, I’d crossed them off the list. Depending on who was doing the rating, CalGov, Yelp, or U. S. News & World Report, Oak Tree got either one or two stars out of a possible five. According to CalGov, the average time each patient got with nurses was well below the state average; the number of complaints was well above.
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