Allan Ament

Aug 012016

I understood being the perfect caregiver was not necessary, or even possible. Nor was it a role I had ever come close to fulfilling. I accepted that being caring, alert, and considerate was more than sufficient. I had also begun to accept the long-term reality that Deloris would probably never return to her pre-stroke self. In order to care for her over this long and indeterminate time, I had to take care of myself. She and I were striving to develop a new normal, a life we could share and enjoy given the limitations imposed by her condition and my responsibilities.

As months became years, Deloris’s condition progressed, plateaued, at times regressed, and progressed some more. As the Ritalin took effect, she became increasingly more capable of independent action. This allowed me to suggest outings—dinners with friends, a day trip to the mountains, plays at our community theater, walks in the neighborhood. Accepting reality, developing a new normal, feeling grateful for my life even with all its challenges, and, above all, being able to laugh at this life’s absurdities gave me strength to keep on keeping on.

When I felt centered, I found caregiving to be a spiritual practice. One of my Buddhist teachers described a person’s being mindful of whatever she or he was doing and feeling gratitude for the opportunity it presented—even in so mundane a task as washing dishes—as a spiritual practice. He called it Kitchen Yoga. When I could care for Deloris with this consciousness and a feeling of gratitude, I felt engaged in the practice of Kitchen Yoga, although, given Deloris’s bladder condition, I renamed it Bathroom Yoga. With this mindset, I was nourished by the depth developing in my own compassion and spirituality. I realized how incredibly blessed our lives were and was grateful for it.

In a workshop entitled “Intentional Spirituality,” Rabbi Ted Falcon, our spiritual and religious teacher, said the only way to remove obstacles in one’s personal and spiritual evolution is to acknowledge, accept, and feel gratitude for them. Slowly, I was finding the inherent truth in this statement.

I have to admit, however, that as much I valued such moments of mindfulness, they were most often recognized after-the-fact, when I was journaling. In the moment, I was too exhausted by the seemingly endless chores—the necessities that kept the house running—to engage in any metaphysical musings on my life.

One morning, Deloris asked me, “What would make you happy?”

Something in her tone of voice and the way she looked at me when she asked the question brought me up short. When I was engaged in household work, she would often ask if she could help. This was the first time I could remember her posing her inquiry in this more general form. I knew it was a serious question, one grounded in her love. I wanted to respond at the same level of seriousness, but I was caught off guard. I said, “I don’t know. Let me think about it. I want to give you the answer the question deserves.” She nodded.

The question triggered a cascade of thought. I had no need and no real desire for material objects. New toys were not the answer. The happiness such objects engender is short-lived and superficial. Of course, Deloris’s getting back to her former self would bring me a lot of joy, but that would not have been a useful response, as its actualization was out of our control. The question was what would bring me happiness in our life now? Deloris deserved an answer to her question, and I wanted to give one to her.

That I couldn’t immediately articulate what made me happy didn’t mean I was never happy or was always sad. I wasn’t. I usually felt less than whole, but this was more often a passive and reactive experience. Happiness was not a place I had recently dwelt except for very short periods of time—visits, really. Trying to answer Deloris’s question triggered an introspection that allowed feelings of loss and the permanent change in my life to surface. Finally, it occurred to me that what mattered most to me were interactions with my wife on a day-by-day basis. The small things.

A few days later, while we were eating breakfast, I said, “Hon, do you remember asking me what would make me happy?”

“Sure,” she answered.

“Well, I know the answer. What would make me really happy is for you to cook me a meal, any meal, by yourself. I would be willing to shop for ingredients and help you in the prep, but you would do all the planning and cooking. Seeing you back in the kitchen, and then having the joy of eating what you cooked, would make me happy.”

Deloris smiled the crooked, imperfect smile she had since the stroke had altered her ability to control facial muscles. “Me, too.”

As she spoke, I glanced out the window and saw the sun breaking through the clouds for the first time in more than a week. That also made me happy.

Once again, I realized how grateful I was for Deloris and for our life together. The key to caring for her brain-injured husband, Alix Kate Shulman writes in her memoir, is amor fati, to love one’s fate. My fate with Deloris, our fate together, was pretty damned good. We were blessed in ways we had barely begun to appreciate.

Aug 012016

Deloris and I live beside the Salish Sea, which like all bodies of salt water, has daily tides. The time and size of each high and low tide varies in a regular rhythm throughout a monthly cycle. Deloris’s and my life seemed to be in a similar ebb and flow but in a substantially more erratic pattern. Certain events, however, were almost certain to take place daily; some of these were more likely to happen in the daylight hours, others were nocturnal. In many ways, especially in the years immediately after Deloris’s return home from the hospital, the nights were the hardest, if for no other reason than that the nighttime events were interruptions to my sleep. I always seemed to be tired.

Many nights, I dreaded going to bed. No matter how soundly Deloris was sleeping, as soon as I approached the bed, she was wide-awake, thinking it was time to get up. And she wanted to go to the bathroom, regardless of any identifiable physical or biological need. Her need postponed my bedtime by at least a half hour and often longer, as it took time for me to help her to get out of bed and over to the potty seat next to the bed. While not the most handsome piece of living room furniture, the potty seat (Deloris informed me commode is the proper term) seemed to fit in with the décor of a queen-sized bed (ours) and a single hospital bed (Deloris’s daybed) in the same room. And it was easier for Deloris to use than going to the powder room down the hall.

I don’t know why, but late night potty trips always took longer than daytime bathroom visits. I became easily frustrated when I was tired and wanted to go to sleep. While Deloris sat on the potty chair, however, all I could do was wait until she was finished so I could help her back to bed. I couldn’t go to sleep, even though she encouraged me to do so. If I did, she might well sit on the potty seat for hours, as she did one night, when she awoke at 2:30 a.m. to go to the bathroom.

“Do you need help?” I asked one night, while still mostly asleep. Deloris was sitting on the side of the bed, gazing at the potty seat.

“No. I can do it.”

I knew she was often capable of standing up and moving the foot or so to the potty seat, so I rolled over and went back to sleep. Several hours later I awoke to find her still sitting on the side of the bed, in the same position as I had left her earlier.

“Why are you still sitting there? Did you use the potty chair yet?”

“No. I was just sitting here, waiting to get up.”

“Hunh!” I grunted, tossing the covers off my body. I struggled to my feet, walked around to where she sat, and helped her up and to the potty chair. I then went back to bed. Within minutes, she was finished, had gotten up, and joined me in bed. She, of course, fell right back to sleep. I remained awake for nearly an hour.

Then there were nights when, after sitting on the potty chair for thirty minutes or so, she wanted to talk. I love talking with Deloris; I just didn’t want to do it at 1:00 a.m. when I needed sleep. I finally decided that if I programmed my mind to include a half-hour interlude between the time I got to bed until I was actually able to sleep, helping Deloris to make a middle-of-the-night potty run might be less frustrating. It would be part of my nightly routine, and talk might even be acceptable.

One night, I came to bed shortly after 1:00 a.m. As I approached the bed, Deloris said, “I can’t believe I woke up to the sounds of grand opera coming from your office.” She knew opera was not a musical form I enjoyed.

“It was actually Gilbert and Sullivan on TV. I was watching Linda Ronstadt and Kevin Kline in The Pirates of Penzance.”

“That’s one of my favorites. I was in it years ago with the Seattle Gilbert and Sullivan Society. How was it?”

“It was good. I liked it. Of course, I’m a Linda Ronstadt fan and I haven’t seen any other production, so I am probably not a good critic.”

Our conversation continued for ten or fifteen minutes while Deloris got up, used the potty chair, and returned to bed. It was fun, despite the time. Deloris was alert, aware of her surroundings and the topic of conversation, present in the moment. It was like the conversations we used to have. And she didn’t dawdle on the potty chair. Maybe the key was to engage her in stimulating conversations so bodily functions happened automatically without her attention focused on them.

My patience was again tested several days later when I awoke about 3:30 a.m. and saw Deloris walking (I use that term in the most generic sense) to the bathroom. Sometimes, even though the potty seat was close by, she decided to walk the twenty-five feet or so to the bathroom. Surprised she had gotten as far as she had on her own, I saw she was not stable enough to make it all the way without assistance. I sprang out of bed to help her and my presence triggered a common middle-of-the-night discussion about how it was too early to get dressed or eat breakfast. She was considerably more awake than I was and voiced a desire to stay that way.

“It’s the middle of the night. You need to go back to bed.”

“I’m awake. I need to get dressed.”

After several rounds of this exchange, with my voice increasing in volume along with my frustration level, I reached my limit. I yelled, “Go to bed. I am really damned tired of going through this every night. You wake up in the middle of night and want to stay up. That’s not going to happen. You need to go back to bed!”

“No, I don’t.”

“Yes, you do. We’re both going back to bed.”

My anger began to ebb and I saw how controlling I was being. This was partly due to my exhaustion and partially out of concern for Deloris’s safety. I didn’t want to stay up, and I didn’t think she could be up alone safely. I took a deep breath, centered myself, and took a different approach.

“Look. I am exhausted and I have to get some sleep.”

“So, go back to bed,” she said.

“I’m not comfortable with you being up and about if I am in bed. I’m worried something might happen and you’ll hurt yourself. So, if you’re up, I have to be. And I really don’t want to be. So, come to bed.”

“I understand. But I’m okay being up by myself. Nothing is going to happen. Go back to bed. I’ll be there shortly.”

I gave up, too tired to argue, and went back to bed.

Twenty minutes later, I was still alone in bed. I got up and returned to the bathroom. I found Deloris sitting on the toilet, reading a magazine, comfortable in her “library,” the water running in the sink as she waited for it to warm up so she could wash her face. She was preparing to dress and have breakfast.

Tired, frustrated, and upset, I said, “Get up and go back to bed,” and then walked away, attempting to control my emotions. A few minutes later, I returned and helped her to her feet. She stood, hunched over, her hands grasping the grab bar, her head touching the wall, unable or unwilling to move.

“Stand up.” I tried to be encouraging.


“Hold your head up. Straighten your back.”

“Okay.” She was mumbling now.

My coaching triggered no movement. It seldom did when she got stuck like this. It was as if no connection existed between her brain and her legs. As I realized the futility of my words, I had the image of the two of us standing in this position night after night after night after night after night . . . with no end or progress in sight. I lost it.

“Stand up straight, dammit!” My voice hit a totally inappropriate volume. I figured the louder I spoke and more insistent I was, the more likely Deloris’s brain would hear and transmit the appropriate message to her legs, which would then move. The reality, of course, was something else. Deloris heard my raised voice and resented my yelling at her. I walked away again, this time to hide my tears. I was exhausted, frustrated, and upset with myself for yelling.

When I finally got her back to bed, almost an hour after this episode began, I lay in the darkness, holding her in my arms, hoping I was able to hide from her my tears and quiet sobs. I may have succeeded in protecting Deloris, but I couldn’t shield myself from the painful sense of futility. I was overwhelmed by the thought that this was as good as our life together was going to be for the foreseeable future. I finally fell asleep, some time after she did.

I was beginning to understand the foundations of verbal and psychological abuse and the realization scared the hell out of me. I did not perceive of myself as an abuser. Was there another explanation for my actions? Was there a label less emotionally loaded I could apply? While there is no justification for abuse, no matter the nature, there were triggers which could be identified. Perhaps being sleep deprived was one reason I found myself losing patience almost daily. Some of my reactions were motived by fear. Deloris’s falls almost always put me over the edge. I visualized her unable to get up, having broken a hip or with blood streaming from a crack in her head. The memory of her sitting in the entryway that dark January morning several years before, her face covered with blood, was never far from my mind’s eye. Yet that midwinter excursion to the mailbox was the only time she had really hurt herself when she fell. So, looking back now, I have to acknowledge that my fear that Deloris would be hurt was only a part of my response. I had other fears as well, and staying free of these had long required me to be alert, to have my rational mind as well as all my senses operating efficiently.

For over twenty years I was a criminal defense attorney. Throughout that time people’s lives, or at least their freedom for years to come, might depend on my being alert and awake, able to respond quickly to what was happening in the courtroom. I had to be able to discern meaning in a person’s tone of voice, body language, the words being used, whether by the judge, the prosecutor, a witness, or my client. My mental acuity was a tool I saw as vital. It was something I’d needed once to succeed professionally, something I needed now to protect my wife, something that was basic to my being me—and it was being seriously compromised by my inability to sleep. At some subconscious level I knew this and I blamed Deloris, or at least her condition, for the loss of something I found to be essential.

Daytime brought its own rhythm and concerns. Some were variations on the same themes that played out at night; others were unique to the day.

Aug 012016

Noise filtered into my consciousness, rousing me from sleep. It was the middle of January. The dark room gave little clue to the hour, since there are not many hours of daylight during a Pacific Northwest winter. I eventually realized the noise I heard was the front doorbell. In the middle of the night, someone at the door is never the bearer of good news.

When I turned on the entry light and peered through the glass, I was stunned. Deloris sat on the bench outside the front door, her face covered with blood! I opened the door, and the stranger ringing my doorbell wordlessly turned, walked back to his pickup truck, and drove away.

“My God. What happened?” Panic mixed with concern as I moved to where Deloris was sitting.

“I fell,” she said. “When I woke up, I wanted to work the crossword puzzle, so I went out to the mailbox to get the newspaper. It was really dark, and I couldn’t see very well. I was worried that I would fall off the side of the driveway.” I didn’t remind her that the driveway is flat. “I got out to the street and the paper wasn’t there.”

“That’s ‘cause it usually doesn’t come until around seven. You were out there hours too early.”

“I didn’t know,” she said. “Somehow I tripped and fell on my face. I couldn’t get up. I sat there in the middle of the street for hours. It was really cold, wet, and dark. I was scared. When I heard a car coming up the hill, I waved my hands. This man saw me and stopped. I told him I was trying to get to my husband who lived in the house over here. He put me in his truck and drove here. I was scared And cold.”

I shuddered, thinking of Deloris sitting in the middle of a darkened road, dressed in a dark coat, dark pants, hat, and gloves, appropriate clothes given the weather. No one driving up the hill quickly would have seen her. The truck must have been slow, because, as Deloris told me later, the driver didn’t have his lights on.

I helped my wife to her feet and into the house. In the bathroom, I began to wash off the blood and inspected the damage. It was obvious her condition warranted a trip to the emergency room. I felt relieved she was lucid enough to explain what happened since she looked like a domestic violence victim. Funny, the thoughts that go through your mind in times of stress.

“Why did you do that? You could have been seriously hurt or even killed.” I knew this was not a useful line of discussion, but I couldn’t help myself. I kept thinking of the what if’s and was annoyed and terrified.

“I couldn’t sleep and wanted to work the puzzle. I was so cold sitting in the road. I tried to stand up, but I couldn’t. I sat there, hoping you would help me up and back into the house. It was so cold; I was really scared.”

“I can imagine—well, no. I really can’t imagine. I need to take you to the ER. The cuts are too deep for me to deal with. Do you want anything to eat or drink before we go?”

“No. I’m okay. Just let me get a bit warm first.”

We drove twenty minutes to the hospital as the sun was beginning to make its presence known.

“That was pretty stupid what I did,” Deloris acknowledged.


Conflicting emotions swirled around in my head. Concern about whether Deloris had suffered any lasting damage fought for space with wondering if I could have done anything to prevent the accident. My main reaction was one of disbelief; I couldn’t comprehend what had made Deloris decide to go outside in the middle of the night without a flashlight. She’d said she was scared sitting in the middle of a cold, dark road, unable to stand up. She must have been scared. I know I would have been.

“I should have taken a flashlight. Then I could have seen the way better. Of course, if I had my car keys, I would have driven, very slowly, to my 7:00 a.m. meeting.”

“What meeting?” I asked, knowing there wasn’t one.

“I can’t remember,” Deloris said. A few minutes later, she added, “Driving would have been pretty foolish, wouldn’t it?”

“Yep. Sure would’ve.” It was hard to consider Deloris driving.

An exam and a CAT scan in the ER indicated she had a broken nose as well as lacerations on her forehead, eye, and the inside of her lower lip. No other damage, physical or neurological, was noted.

The doctor told Deloris, “Your forehead looks shredded. I’m going to give you some local anesthesia to deaden the pain and then clean out the cuts and stitch you up.” He told her the injections might hurt a little because they would be made directly into the cuts, and that turned out to be an understatement.

Deloris howled as the needle was inserted into her forehead. Writhing on the exam table, she repeatedly pleaded, “STOP! THAT HURTS! OW! STOP.”

“Easy, hon. Take deep breaths. I’m here. Hold onto my hand and squeeze it when you hurt.” I attempted to calm her as the nurse and I held her steady and the doctor completed the injections. As the anesthesia took effect, Deloris calmed down and relaxed enough to allow herself to be cleaned and sutured. Her face black and blue, she was given prescriptions for some oral antibiotics. We returned home. She went to bed. A cup of coffee in hand, I sat pondering the morning’s events and wondering how to keep something like that from happening ever again.

After examining her the next day, Dr. Gehrke confirmed that Deloris had not suffered any new seizures, strokes, or other neurological damage. Aside from some contusions and lacerations, her only injury was a broken nose. The trauma probably slowed the progress of her neurological recovery.

Hallucinations followed the incident as well as a noticeable increase in confabulations. Deloris was sure other people were living in the house. In fact, she was convinced we were actually living in someone else’s house, although it looked very much like ours. “I can’t believe you were able to move all our stuff to this house and set it up like it was at home,” she said. “I’m really impressed. But whose house is it? How did you get them to let us live here?”

“It’s our house, hon. We live here.”

Deloris refused to believe my assurances. Since it didn’t seem to bother her to be living in what she thought was a “cloned house,” I let it go.

Along with increased mobility, as she recovered from her fall, Deloris experienced a shift in her sleeping habits. One night I was sitting at my computer about 1:30 a.m., doing some writing, when Deloris came down the stairs. She seemed confused. “Why is it so dark?” she asked. “It’s 1:30 in the afternoon.”

“Actually, hon, it’s 1:30 in the morning. That’s why it’s dark. You should probably be in bed. So should I, truth be told.”

“I’m hungry. And I want to watch some TV.”

I got her some cookies and a cup of tea, helped her get situated in front of the TV, locked up the house, and went to bed. Several hours later, glaring lights in the bedroom woke me up; Deloris had apparently turned on the overhead lights in the bedroom and was saying something about Queen Nefertiti’s mummy that, in my more-asleep-than-awake state, I did not understand. She got back into bed then and promptly fell asleep, leaving me wide awake and wondering how to get our sleep patterns back in sync, and what Queen Nefertiti had to do with anything.

When her nose was set and her face began to heal, she no longer looked like the victim of vicious domestic abuse. Rather, her face looked like a cross between a Japanese Kabuki mask and a raccoon. Having the stitches removed improved her spirits. Her pain was manageable with Tylenol, which allowed her to return to writing and a desire to do more around the house. Although I had to keep her focused in both activities, as she tended to become distracted, I was relieved that she was once again progressing.

Aug 012016

It was difficult to maintain the calm, accepting demeanor with which I attempted to go through my days once I got to the still of late night, when the house was dark and silent. Faced with yet another night alone in bed, my mind replayed the day’s events and my conversations and interactions with Deloris. I didn’t focus on what I’d seen and felt or even what we’d talked about. At night I thought about what I’d lost.

I visualized Deloris sitting in a wheelchair in front of the nurses’ station outside her room, obsessively reading and rereading words that did not penetrate her mind. I saw her failure to realize she didn’t understand what she was reading. I heard her start sentences, but unable to remember what she wanted to say, let them trail off. I felt the emptiness beneath her exterior, the absence of energy, the void where there used to be ideas and passions, a sense of the absurd and of the divine. Her voice was similar, her touch somewhat the same, her joking an indistinct echo of what it once had been.

While I encountered these mental images, Deloris lay in a hospital bed thirty-five miles away, locked in neurological isolation where, blessedly, she seemed to feel little pain and only occasional anxiety. At mealtime, she ate with compulsion, licking every drop of artificially flavored ice cream, drinking pedestrian decaf coffee with non-dairy creamer, relishing canned vegetables and unidentifiable meat dishes. She enthusiastically devoured food that in times past would not have entered her journalistic food-critic mouth. This alone indicated to me how sick she was. She wrote, but the sentences made little sense. Her words and questions might have had surface meaning, but in context they were gibberish. She often did not know where she was, or why.

One day she was upset because she couldn’t remember the name of Lydia’s sister. Lydia, you may recall, is our cat. “Lydia doesn’t have a sister,” I said, “only a brother, Carlyle, who is no longer with us.”

“Yes, she does,” Deloris said. “We have three cats, Carlyle, Lydia, and one other, who is their sister. I just can’t remember the other cat’s name.”

As we talked, I remembered that years ago we’d had a white cat living with us for about four days. This was a stray our neighbor in Seattle had asked us to care for. “Are you thinking about Bullion?” I asked. Neither Lydia nor Carlyle had liked Bullion. I’m not sure we did either. Several days after we spent about two hundred dollars in vet bills on this cat (yes, the cat was named for the cost of the vet bill, not his silver color.) Bullion had peed on the carpet one time too many, and we gave him (her? I don’t remember) back to the neighbor.

“That’s her name. I remember now.” This conversation seemed to have been triggered by Deloris’s flannel pajama pants, patterned with pictures of white cats. She associated these with the cat in history whose name she could not recall.

It wasn’t my idea of a fruitful mental pursuit.

At other times Deloris wasn’t sure where she was. She couldn’t understand, for instance, why the cat wouldn’t come when called, a concern I thought was especially odd since Lydia had never responded when beckoned. But I didn’t mention that. I focused on the more obvious reason. “I think it’s because Lydia is at home on Spyglass Drive, and you are in the hospital in Everett.”

“I don’t think so.” Deloris was insistent.

“Sorry, it’s true. Look around. Does this look like our house?”

“No. I guess you’re right.” At this Deloris became contrite and gave me a little window into her experience. “It’s so hard to remember all this. I forget sometimes. I don’t think my brain is functioning that well.”

She was trying to make sense of her surroundings, a puzzle that confused her again and again.

One day, our friend Fredericka asked Deloris to describe what she felt like being sick.

“It reminds me of being in Nepal,” she said. “There’s a grayness to life. People all around me are sick and dying.”

That certainly had been true of the areas near the temples in Nepal where we encountered lepers and other desperately ill beggars. It had also been true near the funeral pyres. Mostly, however, the Nepalese we met when we visited there were healthy, smiling, seemingly happy people.

I found the image fascinating. In the hospital and the rehab facility, Deloris was around very sick people, although they weren’t necessarily dying. Perhaps this was how her subconscious was learning to deal with physical or mental deficits. I didn’t totally agree with Deloris’s description of Nepal. We both loved the country and the people we met there. I felt the analogy to her present condition was a stretch, but it was not my description that mattered. Deloris was describing her feelings, and the creativity of the analogy, however accurate, was undeniable. It was very Deloris-like, even in its being somewhat of a non sequitur. I was attracted to both aspects.

Unfortunately, my wife was not always able to be creative in her difficulties. One day when I got to Deloris’s room, she had an Everett phone book open on her table. She was frustrated not to find my number in it. I tried to explain that we didn’t live in Everett so the number wouldn’t be there. I wrote my cell number and our home phone number in black numbers and pinned it on the bulletin board across from her bed. This relieved her anxiety. Knowing where to find it and feeling she could connect with me whenever she wished to made her feel better.

I, however, became even more concerned. Deloris’s inability to negotiate even this simple task on her own left me with a sense of profound unease. I knew she had made incredible progress since being hospitalized. I understood we were poised at the beginning of a long process in which she would continue to improve, would plateau a number of times, and even regress at times. Hopefully, her arc would continue heading upward. Though I was prepared for this journey intellectually, I doubted I would ever feel ready emotionally. At night, alone in bed, I cried for my loss. Tears bathed my mental images of Deloris’s complacent, irrational self; they washed visions of her struggling to stand up, attempting—and failing—to exert independence. Even in the bathroom she needed help.

In these melancholy hours, the thought of our walking on the beach, going to movies, traveling, even sharing an evening with friends, seemed so remote it was mental self-flagellation to consider them. When I thought how those simple actions were beyond her present ability, the sadness generated by that perception of loss was excruciating.

The loss of words, her inability to complete thoughts, was especially worrying. This was not a language deficiency, since Deloris had a large and varied vocabulary. Rather it was the result of aphasia, a cognitive condition in which one cannot access, or does not remember, the desired word. Deloris had the language; she could not reach the place where it was stored. If the mind was a perfect library, as a friend had once described it, then some of Deloris’s stacks were presently inaccessible because of obstacles. The pathways needed to be reformed.

That reformation was a major objective of her therapy. It was similar to teaching a young child to think and solve problems. Except Deloris was an adult, not a small child. I couldn’t shake the feeling that adults were not supposed to have to go through this process. Again.

I had always gone to bed late at night. I knew being awake at 1:30 or 2:00 a.m. was not the healthiest idea. However, it was one way I coped with the situation I found myself in. Crying was another. Allowing my pain to surface however it chose felt therapeutic. The anguish was certainly real. I felt it more often and in greater intensity than I allowed myself to admit.

I knew it did no good to stay in that dark place. I helped neither Deloris nor myself by living in a painful fantasy of future incompetence, especially since there was no reason to believe it was the only, or even the most expected, probability. The present reality was hard enough, despite being in many ways positive.

Deloris had improved, and more progress was expected. She was happy, or at least peaceful. She lived in the present, something I strived to achieve in my spiritual practice. Of course, her present reality was not always the shared one. That was a problem, but only to me, not to her.

Many nights, I had to wipe away the tears before I could try to sleep.

Aug 012016

“What would you like for lunch?”

Deloris didn’t hesitate. “Pie.”

“Just pie? Nothing else? A sandwich or salad?”

“Nope. Just pie. A piece of peanut butter cream and a piece of raspberry cream.”

Deloris and I were at a sandwich shop on the Everett waterfront, accompanied by her recreational therapist. The excursion was part of a program to help my wife become socialized and reintegrated into the community in preparation for discharge from the hospital. It was the recreational therapist’s job to facilitate the process, and this luncheon excursion was a first step. Deloris was able to walk from the car to the restaurant, read the menu, determine what she wanted, and give the waitress her order. Her ability to handle these seemingly mundane, but important daily activities with confidence and ability was encouraging. It demonstrated how much she had recovered in the six weeks since her initial hospitalization.

Deloris devoured both pieces of pie. They did look good. I rationalized that Deloris’s lunch was nutritious since it contained protein (peanut butter), fiber (also from the peanut butter), vitamins (raspberries), and calcium (cream filling). Equally important was the pleasure of being away from the hospital and free to order and eat whatever she wanted, a freedom she found especially delicious.

When we returned to the rehab center, Deloris’s first request was for me to escort her to the gift shop. She had chocolate in mind.

The day before this excursion, some friends had gotten married. When I received my invitation I had called them to ask if it included my wife. With obvious discomfort and more than a little embarrassment, they voiced a preference that Deloris not attend. They noted concern that their living room, the celebration’s location, was neither wheelchair accessible nor handicap friendly. The crowd of people might make it difficult for Deloris to concentrate, which, in turn, might make her uncomfortable. While they didn’t say this, I thought they also might not want the focus of guests, many of whom were good friends of ours, shifted from them as the wedding couple to Deloris. I assured them their decision was not a problem.

“Andi and Norman are getting married,” I told Deloris. “The wedding is at their house.”

“That’s great!” she said. “I want to go.”

“Of course,” I said. “You need to know, however, there are steps leading into the house. The bathroom has no grab bars. And lots of people will be crowded into what you know is a small room. Are you sure you are going to be comfortable?”

“Oh.” She thought about it. “Maybe not.”

“After they return from their honeymoon and you’re back home, let’s invite them for dinner and some island time. That way we can spend some quality time with them. I’ll explain you didn’t feel comfortable attending, give them a hug from you. And do the same to everyone else who asks about you.”

“Good idea.”

So, a possibly awkward situation was avoided.

On my way to the wedding, I stopped at the hospital, carrying the couple’s present. It was wrapped but needed a ribbon. My plan was for Deloris, our household’s designated gift wrapper, to finish the job, making her feel more connected to the wedding.

“Find me some long leaves,” she said.

“Why? What are you going to do with them?”

“I’m going to braid them into a ribbon and paint them.” Apparently, once Martha Stewart has taken up residence in a mind, she doesn’t leave—no matter what the circumstance. I struggled with how to get Deloris to simplify her approach and focus on the materials I’d brought and the short time frame we had. A few minutes later, she picked up a crossword puzzle and announced, “I’ll wrap the present later.” My observation that I was under some time pressure and didn’t have time for her to do it later had made no impression; however, the crossword puzzles had caught her attention and the half-wrapped wedding present was no longer an issue for Deloris—another potentially awkward moment avoided.

I wondered how the shift of focus had come about. Was the puzzle merely a mental distraction? Had the crossword puzzle crossed her field of vision, causing her to focus on it rather than the task she had been working on? This was a common enough occurrence. Or was this change in activity a way of asserting a bit of independence, a bit of control over her now diminished life and how she spent her largely prescribed time?

Whatever the answer, I finished wrapping the present myself. The mental image of Deloris’s concept of painted, braided leaves brought a smile to my face as I worked.

Driving back to the hospital after the wedding, I received a voicemail message from Deloris. This was the first time since her stroke she had called me. “Hello, this is Deloris. I want to talk with you. Please call me.” Her voice was a bit hesitant as if she was uncomfortable speaking into the void that is voicemail. Almost as amazing to me as getting this message was the fact that she answered the phone when I called her back, also a first. “Please pick up some chocolate covered pecans and bring them to me at home,” she said.

“I’m almost at the hospital and really don’t have time to go looking for candy,” I said. “I do have a surprise for you.”

“Can I eat it? Is it chocolate?”

“You’ll just have to wait and see,” I said. “I’ll be there in ten minutes.”

When I arrived, she was in bed, reading her journal. “I’m tired,” she told me. “I need to have ‘lie downs’ whenever I can. The therapists work me too hard!”

I laughed. After showing her pictures of the wedding I had taken on my digital camera and relaying messages of love and support from friends, I gave her the surprise—two pieces of chocolate wedding cake.

The cake quickly disappeared and Deloris went back to reading her journal. She ignored her dinner when it arrived.

“I’ve already eaten. I had wedding cake for dinner,” she said when I asked if she was going to eat. Who could blame her for choosing chocolate wedding cake over hospital food? Eat dessert first; life is uncertain has always been her guiding culinary principle. And as her life was becoming increasingly uncertain, perhaps eating wedding cake for dinner meant her decision-making abilities were returning.

The week after the wedding brought another excursion and another culinary adventure. For weeks, whenever the nutritionist asked Deloris what she wanted to drink with dinner, her response was either a martini or a glass of red wine. Neither, of course, was available through the hospital’s kitchen; nor did I think Deloris was totally serious. The exchange became a running joke. Now, Deloris was finally able to have a glass of wine with dinner.

We were at a waterfront restaurant having dinner with Ben and Fredericka, who were back in Seattle for a while. What made the evening memorable was not the conversation with old friends, or even serendipitously running into other friends at the restaurant. Rather, it was watching Deloris engage in previously normal activities, including ordering and drinking a glass of wine with dinner. Little variations can often result in more substantial changes. I was overjoyed by watching Deloris manage these rather routine activities with ease, something impossible for her to do even a week before.

At the same time, I was exhausted by the emotional ups and downs I was experiencing as I attempted to navigate the roiling currents of Deloris’s recovery. It was similar to what I’d experienced the few times I rode a roller coaster. There is the initial excitement when settling into the car. As the coaster slowly climbs the first incline, there is the feeling, the hope really, that this isn’t going to be bad. As I crest the initial rise and plummet down a steep incline, screaming in panic, I hope against hope the ride will be over quickly. Of course, it never is. There are more hills to climb, more descents and hairpin turns to careen through, more rapids around the next bend in the river to disrupt the calm enjoyment of life and scenery.

No matter how much I might wish the ride over, no matter how much I prayed Deloris would miraculously be returned to her pre-stroke self, I knew I would have to stay with this to the end, whatever and whenever that might be. I was here voluntarily, if not entirely of my own volition.