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.
“Just take a look,” Janell said. “They’re under new management, with a new director. It might not be as bad as you think. It’s probably better than wherever Mr. Reynolds would be placed in the event of a 911 call.”
At Oak Tree I saw staff interacting with patients in a friendly and cheerful way. The halls were clean. It didn’t smell bad. If I ignored the previous reviews, the Oak Tree met my now-minimal standards.
I described Mike’s condition to the director, including his difficult behaviors and constant wandering. She glanced at an occupancy chart, said they had an open Medi-Cal bed, and we could move Mike in as soon as they received the necessary papers. Because we’d recently provided all of that information—recent medical evaluation, hospice records, notarized medical power of attorney, Physician Orders for Life-Sustaining Treatment, clear TB test results, etc., etc.—Janell had the completed packet at her fingertips. She faxed it in that afternoon, and we moved Mike to the Oak Tree the next day, December 9, 2014.
The first move to The Guiding Star at Porto Sicuro had included two boxes of framed pictures that the move organizers had hung on the wall before Mike arrived there. There was another box of picture albums, a single-sized extra long bed, a TV, a bedside table from our personal bedroom set, a favorite antique lamp, a full wardrobe of shirts, pants, pajamas, jackets, sweatshirts, shoes for all occasions, writing materials and a shelf of favorite books. With each following move, Mike’s possessions had diminished, in keeping with his ongoing diminishing capacity to notice or make use of things. Where it had once taken two cars and a small truck to move Mike’s possessions, the things we needed to take to the Oak Tree fit easily into the small trunk of the Prius. The list of items on the Oak Tree move-in form included five pair of pajamas, five shirts, and five pair of elastic waist sweat pants. The request for five each of those basic items was to allow for laundry turnaround. We also brought two pair of shoes and two framed family pictures. The pictures we hung on the wall at the foot of Mike’s bed where, if he looked, he would see them upon awakening in the mornings. Everything fit into a narrow closet and the two drawers below the closet. There was a hospital-style curtain that divided Mike’s space near the windows from his roommate’s space near the door.
There was a large, secure, grassy area off the hall near where Mike’s room was situated. Marg and I led him out there and watched as he looped around. It was much more spacious than the enclosed yard at Elena’s, and Mike could make a complete loop there without backtracking. Maybe he could find a few anxiety-free moments circling the perimeter of the yard.
As far as Mike’s adjustment to the new place, it hadn’t seemed to make much difference to him one way or another. He walked the halls, looped through the outdoor space, took food from other patients’ trays, picked up objects from other rooms and set them down elsewhere. He lashed out if anyone, staff or patient got in his way. After only a few hours there, the director called to say they found it necessary to bring in an extra caregiver exclusively for Mike.
The day after we moved Mike to Oak Tree, the director called and asked if I and a hospice representative could meet with her and the Oak Tree director of nursing the next afternoon. Once again, I relied on Marg’s expertise to ease communications with the officials. In addition to Janell from hospice, the hospice doctor and director of nursing joined us. First on the agenda was the necessity of having individual 24-hour care for Mike until they could come up with a drug regimen that would calm him. They would bring in someone from their staff, but it would be at a fee of $20 an hour. This was certainly not an unreasonable cost. It probably meant that the caregiver would see $15 an hour of that at the most. The director of nursing said it could take a week or two, certainly not more than a month, to find the right balance of anti-anxiety, calming drugs. As soon as they found that balance, we could forgo the 24/7 extra care. While the hospice doctor and nurse, as well as the Oak Tree nurse, talked about possible drug regimens, I did the math. At $20 an hour, a day’s care would cost $480. If it took a month to get Mike stabilized, that would be $14,480. Two weeks—$7,240. One week—$3,620. Even a week of such personalized care would cost more than a month at Elena’s. So yes, Medi-Cal was covering the Oak Tree cost, but Medi-Cal would not cover the private 24/7 care.
“I can’t do that,” I said, interrupting the “which drug or combination of drugs might be most effective” conversation.
The Oak Tree director of nursing turned to me. “We can’t manage Mr. Reynolds without that added care,” she said.
At this point, Janell and the other hospice people began talking about possible ways to fund the added care. Janell spoke clearly and fervently on my behalf. Frankly, my head was spinning, and I don’t remember the details, but ultimately, between some help from hospice and a hard-won agreement that the Oak Tree folks would provide the necessary added care for the next two weeks, I had dodged the $480-a-day bullet, at least for the moment.
After the rather grueling meeting, I went out into the hall to find Mike. He was making the rounds, his assigned caregiver right at his side. But before the caregiver could redirect him, Mike took a quick turn into a nearby room where an ancient-looking woman was propped up in her bed, eating lunch from a tray. Mike grabbed a glass of juice from the tray, and downed it before the caregiver could stop him.
“Help!” the woman screamed.
“Don’t worry, sweetie, we’ll get you another glass of juice,” the caregiver reassured her.
“C’mon, Mike, let’s see what the weather’s like outside.”
I led him to the outdoor area and walked with him, steering him away from the entrance back into the building each time he passed. It was a day of clear skies and weather in the high 60s. I breathed deeply of the crisp, clear air, relieved that, at least for now, things were okay for Mike at the Oak Tree.
We’d only been outside for a few minutes when the caregiver came out and stood next to me. He watched as Mike walked the perimeter. Smiling, he nodded toward Mike and said to me, “Too fast. Hard to keep up with.”
“I know,” I said. “He’s especially fast when food is within reach.”
This time when Mike reached the door to the hallway I didn’t interfere.
“I’ll be back tomorrow,” I told the caregiver, who rushed to catch up with Mike.
I stopped for a minute to talk with the nurse for Mike’s unit, telling her how much I appreciated their help.
“He’s a tough one,” she said. Then, smiling, she assured me, “Don’t worry. We’ll get him figured out.”
I was again impressed with the gentle, good cheer the Oak Tree staff brought to their tasks.
We were in the middle of the Christmas season, a particularly poignant time, given the still fresh memories of Christmases with Mike—parties at our decorated-to-the-hilt Gold River house. Overnight visits from our kids and grandkids after our Christmas Eve dinners and opening of gifts, music, Christmas lasagna, eggnog, and Mike in the middle of it all, full of laughter and love. And although it had been a good, or not so good, six years since the Mike of laughter and love had been the instigator and energizer of our Christmas folderols, I still at times felt a fresh, fleeting stab of grief at the sound of a particular carol or the sight of an over-decorated tree. But Matt, Leesa, and Mika would soon be down from Walla Walla for our family celebration. We would gather at Sharon and Doug’s, Lena and Subei’s, in Woodacre. Dale, Marg, and Corry would join us, as would Cindi and family. It would be a happy time as new traditions gained purchase in our lives—heavier on happy than on sorrow.
After 10 days at the Oak Tree, Mike still needed his own individual caregiver 24/7, but it seemed things were going a little better. With each visit I was relieved to see that the staff seemed genuinely to like Mike. His roommate’s wife found Mike to be troublesome because he often went after her husband’s food, but she was not totally without empathy. Marg and I, along with Janell and other hospice staff, were scheduled to meet with the director again at the two-week point. I was sure we would be revisiting the issue of who was to pay for Mike’s extra care, but the meeting was four days away, and I was in the “one day at a time” mode, enjoying pre-Christmas festivities.
On Friday evening, shortly after 9 o’clock, I’d been to dinner and a play with Dale and Marg and two other longtime friends. Driving home, still feeling buoyed by shared stories, laughter, and the ease of conversation that comes with longtime friends, my thoughts were interrupted by the jarring ring of my cell phone.
It was Robert, the night nurse on Mike’s ward. He said Mike had started breathing heavily around 9 o’clock. He’d had his usual day, constantly walking the halls, taking food from other residents’ trays, keeping the attendant assigned solely to him on his toes. He’d eaten three big meals along with whatever food he could find in between. Now his breathing pattern had changed. At first I didn’t understand the significance of “breathing heavily.”
“Should I come in the morning? Or now?”
“Now,” Robert said, and I wondered about what could not be stated.
At the intersection I turned right toward the care center, rather than left toward home. I pulled to the side of the road long enough to select Dale’s number on my cell phone, then continued on when the Bluetooth connection kicked in. Dale asked that I call back after I’d had chance to see what was going on.
I was parked in the Oak Tree lot by 9:30. The halls were dimly lit and, in contrast to the daytime bustle of attendants and nurses, visitors and patients, the place was eerily quiet. As I entered Mike’s room, the LVN rose from her chair beside his bed and motioned for me to sit. Mike’s eyes were open, but he didn’t look my way when I entered the room nor did he show any recognition.
“Hi, Mike. I’m here,” I said, leaning in close in front of his gaze.
It was obvious that his task was simply to breath— deep breath in, slight pause, breathe out, deep breath in, slight pause, breathe out. Although his breathing was labored, he did not seem distraught. I pulled the chair close to his bedside and stroked his thin-skinned, bony arm. Was he dying?
There had been several times over the past three, maybe four, years when one or another of the people who loved Mike would say they didn’t think his body could keep going much longer, but keep going it did. Walking day and night. Eating day and night. Staying strong in spite of weight loss, chronic diarrhea, and eating nonfood items. For Mike’s sake, and mine, for the sake of everyone who loved him, I’d long been wishing for Mike’s body to give up—for Mike to be released from the horrible prison of extreme dementia. Now, paying attention to his every breath, I wondered if death might be imminent.
I told him I loved him. I thanked him for so many good times together, for our partnership in being mom and dad to Sharon, Cindi and Matt, our partnership in life. I thanked him for loving me.
How long had it been, I wondered, since Mike stayed in one place long enough for me to sit beside him and express any of my thoughts or feelings? But now, here he was, staying in one place, breathing in, breathing out. I felt his cool, skeletal forehead. I stroked his sunken cheek. I watched him breathe. I watched the steady pulse of a large vein in the crook of his left elbow. I remembered from the old days, the comfort of falling asleep with my head resting on his chest, lulled by the strong, unvarying beat of his heart.
After 15 minutes or so, I went out into the hall and called Matt, then Sharon, then Dale, to tell them of the changes. Sharon and Matt were often not immediately available by phone, but this time they were, and I was glad for that, though there was not much I could say, nothing they could do. I returned to Mike’s room.
The room was an institutional grey, clean, smelling not of filth, but not of home. The over-bed rolling tray table sat against the wall next to the privacy curtain. There were several large plastic cups with tops, straws still inserted in some. A number of empty bowls and small plates took up the rest of the tray space. To a casual observer the contents of the tray would indicate dishes accumulated since breakfast or before, but I knew better. Mike, with his voracious appetite, his animal hunger, had emptied the contents of the plates, bowls and cups three or so hours earlier, at dinnertime.
I watched his breath, his pulse, and repositioned the light sheet over his pajama-clad emaciated body. I stood and leaned in, putting my face in front of what appeared to be his pathway of vision. The focus of his eyes did not change. His breathing had become slightly more labored.
The LVN came in to ask if I’d like water, or tea. I told her no, thank you, but that I appreciated the offer. She smiled, then quietly rolled the over-bed tray out and down the hall. Robert came in to check on Mike, stood and watched, took his pulse. I followed him out of the room and asked what he thought. He repeated what he’d told me over the phone. Mike ate a lot during the day. He walked the halls continuously. After dinner, Mike got into bed of his own accord—a first. Something had changed. Robert didn’t know what. The pattern of Mike’s breathing had changed. Robert didn’t think Mike was in pain. I hoped that was true. It seemed as if it were true.
I went back to the chair by Mike’s bedside. He was breathing harder. I wondered if his body was giving up. For so many years I’d wondered how much longer he could go on, and he’d kept going on. Now I watched his pulse. I listened to him breathe. I told him again that I loved him. I thanked him again for all of the good times. I rested my hand against his dry bony cheek.
“I’m okay,” I said. “These have been some hard, hard years, but I’m okay. It’s okay for you to let go.”
I told him this just in case there remained within him a sliver of understanding.
I watched each breath. I listened as his struggle grew stronger. I watched his pulse.
Sometime after 10 his breathing became less regular, with occasional pauses between breaths. A while later a soft rattle came with intermittent breaths. The pulse in his arm beat on. His work was harder now, the pauses longer. By 10:30 some of the pauses were so long I wondered if he’d taken his final breath. I repeated what had now become a mantra: I love you. Thank you for so many good times. Thank you for loving me. Thank you for being a good dad. It’s okay to let go.
Around 10:45 there was a very long pause in Mike’s breath. The pulse in his arm was no longer visible. I pressed my fingers to that place in the crook of his arm. Nothing. The pulse place in his neck. Nothing. He made a deep gasp, then quiet. I sat watching. Waiting. It was as if I were looking down on the scene from a great distance. I saw Mike stretched out and silent. I saw me sitting close beside him. All at a distance.
It was close to 11 when Dale and Marg came into the room. I stood to greet them. “He’s gone,” I said.
Mike gasped another inhale.
Marg went to his side, touched him. Kissed his forehead. Felt for a pulse. We watched and waited. Was there one more gasp? I thought so, though I wasn’t sure. Did Marg close Mike’s eyes? I’m not sure of that either. The LVN came in and offered to clean Mike up. Marg said that would be nice and we left the room. After a while the nurse came out with a bundle of dirty laundry, and we went back to Mike’s bed. His face looked more relaxed and peaceful than I’d seen it in years.
“Do you want some time alone with him?” Marg asked.
“I had that before you got here,” I said, and went back out into the hallway.
For the past few years, ever since Mike was no longer Mike, I’d been wishing for his body to let him go. My wish finally fulfilled, it seemed almost too much to take in. As I went through the motions of dealing with details, I felt as if I were seeing everything, myself included, from a distance—functioning while floating suspended in limbo.
I called Matt, then Sharon. We said what people say: It’s sad. It was time. He’s finally free. They wished they could have been here. I wished so, too, and reminded them that they had been constant supports despite geographical distances.
I called Cindi. She, too, expressed a mix of sadness and relief. There were more phone calls to be made, but there was no need to interrupt people’s sleep. This news could wait until morning.
I called the University of California, San Francisco, Memory and Aging Center to confirm the prearranged plan for the donation of Mike’s brain. But because Mike died on a Friday, things were more complicated than they would have been on a weekday. There would be no one at UCSF to receive his body until Monday. Nautilus would have to transport his body to a local mortuary, where it would be stored until Monday. Then Nautilus would again have to transport Mike’s body to UCSF. The Nautilus contract covered transportation from the place of death to a place of cremation. They would cover transport to the local mortuary, but the trip to UCSF, then the trip from UCSF to a crematorium would be extra. There would, of course, be a daily fee for mortuary storage. I chose to forgo the brain donation.
In hindsight, I wish I’d stayed with the donation plan because FTD research is so needed. I wish I’d figured out that I could manage the $500 or so added costs. But I had to make a quick decision one way or the other. And I was so used to having absolutely no discretionary funds that I couldn’t see my way clear to say yes to another big expense. So Nautilus transported Mike’s body straight to the local crematorium.
A week later UPS delivered the cremains, the outside of the package clearly labeled, in red, “Contains Human Cremains.” Inside the package was a heavy bag that contained a securely fastened, sturdy plastic box, again with the “Human Cremains” label, plus Mike’s full name, Social Security number, and dates of birth and death.
I placed the package on a high shelf in the garage. Sometime later, I and the rest of the family would come up with a plan for dispersal. In the meantime, there were many other things to attend to—sending death notices to the California State Teachers’ Retirement System, to Social Security, and to an insurance company where Mike had maintained a small, paid-up policy. Getting multiple copies of our marriage certificate to include with the death certificates. Providing proper documents to the credit union that would allow them to remove his name from a joint account. Cancel Mike’s health insurance policy. Etc., etc., etc.
We gathered for Christmas only six days after Mike’s death. Scattered throughout the frivolity of that year’s celebration, and the extreme levity that Dale’s 70th birthday prompted, were remembrances of Mike, expressions of our collective and individual grief, and a recognition of our shared relief that his long and torturous ordeal was over.
February 2016
Dear Mike,
Awake at 4 this morning, I took my iPad from the bedside table and tapped it on. Up came Our Souls at Night by Kent Haruf, published posthumously. I’d pre-ordered the e-book in January and have been waiting for it with a combination of eager impatience and foreboding. Books published after an author’s death always worry me. What if the book wasn’t ready yet? What if putting it out into the world was simply a business decision made by the author’s publisher and family?
I may not even read Go Set a Watchman, the novel Harper Lee wrote in the ’50s, before she wrote To Kill A Mockingbird, and which is just now being published. Ms. Lee has been adamant over the years that she would not write or release another novel. Now that she’s 89, in assisted living, without oversight by her recently deceased sister and caregiver, the old manuscript has suddenly been rediscovered. Of course, it will be a huge moneymaker, but Ms. Lee is in no need of money. Someone else may be, though. I’m afraid to read it. On the other hand, if it’s only half as good as To Kill a Mockingbird, it will be well worth the read.
But the impetus for this letter is Our Souls at Night, Kent Haruf’s recently released novel and my early morning reading and ruminations, not the pitfalls of posthumous publishing. Although I’m determined to live in the present, plan for the near future, and trust the farther future to the forces of the universe, I’m often drawn back to our lives together, especially those last most difficult years, especially in the silence of the very early morning hours.
This early morning, I read Kent Haruf’s depiction of two old people—a man and a woman—who had recently become close companions, and were sharing stories of their earlier lives. The man, Louis, is telling Addie about the moment of his wife’s death. He and his daughter, Holly, were in the room with her:
“She stared at us with those big dark eyes like she was saying, ‘Help me. Help me. Why won’t you help me?’ Then she quit breathing and was gone. People say the spirit stays around for a while floating over the body and maybe hers did. Holly said she had the sense of her mother being in the room and maybe I did too. I couldn’t be sure. I felt something. Some kind of emanation. But it was very slight, maybe just a breath. I don’t know. At least she’s at peace now in some other place or higher realm. I think I believe that. I hope she is.”
The passage caused me to wonder if I’d left your bedside too soon after your final breath, if your spirit had hovered, seeking me while I, ever practical, was at the nurses’ station calling Nautilus. If so, I’m sorry. I’m sorry for that, and for so much more, though I do at least take comfort in having been with you during your last hours, and telling you things which, because of your constant movement, I’d not been able to tell you for years. And I take comfort that I was by your side, my hand on your arm, as you breathed your last.
Now, more than a year later, Kent Haruf’s character has raised the possibility that the spirit stays around for a while floating over the body, and I wonder if that was the case for you, if you were looking for me, and I wasn’t there. I’m reminded of how, in the early stages of FTD, before I had any idea of what was going on with your brain, you would call me on my cell phone, sounding angry, saying, “I don’t know where you are!” And I would tell you, the store, the gym, the writing group, and then, just minutes later you would call again: “I don’t know where you are!”
Once I came home from the market to find you pacing in front of the garage. “I couldn’t find you!”
I was always careful to tell you where I was going and when I would be back, and your rude, angry phone calls when I was away angered me. Now I know that no matter what I’d told you, or what notes I’d left on the refrigerator, you had lost the capacity to know where I was. Now I think your anger must have been based in fear. And now I wish I had stayed by your hospital bed longer, in case your spirit was trying to find me.
Marilyn