On a visit shortly after the nail-clipping caper, I managed to get Mike to stand still on Green Hill’s scale long enough to get a reading: 130 pounds. Mike’s weight loss was a mystery. He ate a lot, hour after hour, day after day. Perhaps it was the persistent diarrhea, or continually being in motion, or something else. All the basic tests—blood, urine and stool—had been given more than once, and nothing showed up to answer either the question of why weight loss or why diarrhea.
Mike remained amazingly strong given his low weight. He also showed no signs of being in pain. My main concern was that he not be in pain. An earlier major concern was that he not be fearful, or agitated, or anxious, but there’d been no solutions to those problems and at this stage, I doubted there would be.
By mid-April, Mike’s weight was down to 124 pounds. Elena insisted that the scale was inaccurate. That was possible, maybe even likely, but it showed a trend. Elena told me, “He’s gaining weight. He’s getting fat around the middle.”
“Really?”
“Yes. I shower him every day. Sometimes two or three times a day. He is gaining weight around the middle.”
On the next round I caught Mike and rubbed his belly. There was a slight pooch at his waist, sort of like the very early stages of pregnancy.
“Getting a beer belly?” I asked.
Mike smiled and walked on.
His pooch was not high enough for a distended liver. At least I didn’t think so. But I wondered, wouldn’t he someday experience the sort of organ shutdown that got Karen Carpenter? How much more weight could he lose and still carry on?
On the lighter side, Elena called to Mike, “Come here. Show Marilyn” (pronounced Mary Lin) “your nails.”
I followed as he walked past.
“Let’s see your hand,” I said, catching up and walking beside him. I held my hand out to him. He didn’t take it. Gently, carefully, I reached for his hand. Before he yanked it back, I got of glimpse of nicely trimmed nails.
“How did you manage that?” I asked Elena.
“Livia and Dorin helped. Easy. It was bedtime. He was very relaxed.”
I waited for her to say more. When she didn’t, I asked, “Did you give him trazodone?”
“No.”
“Valium?”
“No. No drugs. It was easy.”
Recalling the wrestling match four of us had the last time Mike’s nails had reached the length of Cruella De Vil’s, it was hard for me to consider “easy.” I pressed on.
“So how did you manage?”
“Just a little bit,” she said, holding thumb and index finger less than an inch apart.
She watched intently for my reaction. “In 7-UP. Just a little.”
It was then that I remembered the conversation she, Livia, and I had after the very difficult nail-cutting escapade back in February.
“Vodka?”
She nodded.
“Whatever it takes,” I said.
She held a finger to her lips. “Shhhhh.”
It was not only against regulations for caregivers to clip nails. It was definitely against regulations to dispense vodka. Elena was careful to follow the letter of the law, her livelihood held in the hands of licensing agency personnel. I did appreciate that, in times of desperation, she was willing to act beyond the proverbial box.
I was ever grateful for people like Elena and Sang. Even though our parting from Sang and Daniel was uneasy and strange, the care they gave Mike for more than a year was invaluable. Elena’s style of caregiving was very different from Sang’s, but she, too, was always on the job, practical, efficient, and affectionate.
Whenever I thought of Elena at work, I wondered how she could manage to do everything for three needy people when I had been unable to manage even for one. But after a walk, or music, or a glass of wine, I am comforted by the reminder that, given our own particular strengths and weaknesses, we all do what we can do.
ANOTHER LOSS
April 30, 2014
Sunny had been diagnosed with congestive heart failure back in January. Unlike her earlier self, she was ready to return from walks after just a few blocks, but she’d been doing well with the help of meds.
Then around 3 o’clock in the morning, Monday, April 30, I was awakened by her coughing, gagging and gasping for air. She scratched at the door to go outside, but balked at the two steps that led down from my kitchen into the patio. I carried her outside and set her down on the grass, thinking she needed to pee. But she just stood there, struggling to breathe. I took her back inside, put her on my bed, and lay down beside her. This was usually a place of comfort for her, but she struggled to get down and go back outside. Perhaps it was the cool air she wanted, or the slight breeze. Whatever it was, she stood gasping and heaving for breath. Nothing I could do relieved her distress.
I called the emergency vet. They recommended that I bring her in so they could give her an intravenous dose of Lasix, and oxygen for short-term relief. They confirmed, though, that the results of such treatment would be short-lived. The question was not only why would I put her through that, the long drive, the lonely medical procedures, but how could I afford such treatment?
I comforted her as best I could. I got her to our nearby regular vet as soon as they opened. By that time she was unable to walk and her struggle for every breath was even more severe. At that point the kind thing seemed to be to help her on her way. I held her close as the vet injected her with the drug that would ease her ending. Her body slowly relaxed, the struggle for breath ended, and she was gone. By the time I left the parking lot, I was missing her terribly. But I had no doubt that I’d made the right decision. Although her last few hours had been extremely difficult, she’d had a long, happy life, and was amazingly healthy until her last few months. Not bad for an old girl of 93 dog years.
She had been my alarm clock, regularly rousing me within 15 minutes on either side of 6:30. The Tuesday morning after that fateful Monday, about 6:15, still mostly asleep, I heard Sunny stirring, shaking her head and rattling her tags, just as I’d been hearing over the past 13 years, ever since we bought her first puppy collar, and secured her first license and identity tags. It took a moment to realize that the sounds I’d heard were only ghosts of the familiar—that Sunny now only lived in the realm of dreams and memory.
Would that I had been able to do for Mike what I’d done for Sunny. But Mike was destined to walk his anxiety-ridden loop, day in and day out, until something less certain and comfortable than the vet’s potion relieved him of his tortured life.
HOSPICE CARE
April through July 2014
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.
&nbs
p; 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.
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