Looking Back, Moving Forward - Bittersweet: Essays

By Candace Wayne

When lawyer, wife and mother Candace Wayne’s beloved husband John is diagnosed with Lewy Bodies Dementia, she finally has a name for the small changes she’s born witness to for years. 

In this essay collection, Candace offers snapshots of the years leading up to John’s death, and those that unfold afterward.

Task-oriented and responsible, Candace is efficient in her role as caretaker, learning how to best support a husband who must come to terms with his slow-creeping loss of self-sufficiency. Meanwhile, Candace’s daughters have their own experience with their father’s changes, and the whole family must bend without breaking to accommodate his loss. 

By turns raw and contemplative, Candace’s essays depict family road trips, restaurant outings, and doctors appointments, and finally John’s last breaths. 

Much like Joan Didion’s The Year of Magical Thinking, this collection is true to the experience of mourning, taking the reader through the author’s real-time experiences before revisiting episodes through the lens of retrospect. 

Ultimately, the author’s sadness makes way for reluctant optimism as Candace awakens to the bittersweet realization that the person her husband’s death caused her to become is a woman she’s grateful to know. 

• Language: English
• Publisher: Outskirts Press
• Release date: Apr 16, 2024
• ISBN: 9781977274250

Book preview

Breathing

2019 November 8 through November 15

On November 8, 2019, I arose quietly at about 4:00 a.m. and tiptoed out of the area in the back of the kitchen where we had been sleeping for three years. After a few hours of light sleep, I felt antsy; too much cinema was playing in my head. I put a shawl over my flannel gown and walked out on the front porch. It was chilly and dark except for the streetlights and the moon peeking out from behind the clouds. I stood there for a few minutes, and the cool air and natural views stopped the movies playing in my head. The deep breaths I took gave me a much-needed dose of calm. The thoughts I had the previous night about John saying a few days before that he hoped he could run again lured me back into the dining room to the picture of John sitting on the wall-to-wall bookshelves for over thirty-five years, removed only when dusted. It should have been on the cover of Runner’s World: a perfect specimen of a runner in his white sleeveless tee shirt, blue shorts, long, muscular legs—quadriceps the envy of anyone who saw him—their definition created over years of exercise and running. His arms were in sync with his legs, the biceps a testament to all the weights he’d picked up since he was a young boy. He was truly poetry in motion. John’s face was turned to the left slightly to see the clock just as he was about to cross the bright yellow finish line. For John, timing was key.

Last night, John said something that was one of the reasons I could not sleep. He was ready for sleep. I washed his face and hands and checked that he was dry. He was propped up in his bed and was calm. His face was smooth, and his eyes were wide open as he looked directly at me and took my hand.

Can you write this down for me? John asked.

Now? I asked.

Yes, please, now, he said.

Let me get my phone. I was on the beige armchair beside his bed, which I had brought back here when I set up this bedroom in the back of the kitchen cooking area where our oak table and chairs had sat for all the years we had lived here.

I pulled my phone from my pocket. I’m ready, I said.

I am asking the Lord to give me whatever years I have in retirement to end up with a good wife, kids, relatives, friends, and a good relationship with the Lord. I feel that I will be given decent marks overall, especially since I really tried to do the right thing. John Jemilo.

John’s use of the word retirement struck me. I almost asked him what he meant, but I was entering what he said quickly and could not, at that moment, understand the gravity of what he was saying.

I will read this back to you and tell me if I missed anything, I said.

He rarely used the word Lord except in a Catholic prayer. As I read his words, I realized he was talking about looking over his life and then his death. My eyes were moist. I rested my chest on John’s chest. John knew, more than I did, that his death was close.

You got it right, he said.

That was beautiful, John. You sure did your best, my sweet, and the Lord knows it.

I never used the word Lord, but it was the appropriate word this time.

Do you think you are leaving us soon, John? You can tell me what you are feeling.

I could see the blue in John’s eyes as the bright lights in the kitchen were still on. He looked at me, his facial skin smooth with only a hint of a few wrinkles, his lips relaxed. He reached out for my hand.

I’m just tired, that’s all. Just tired. But I love you. I’m sorry if I have been a lot of work for you.

John, we are a team. We have taken care of each other for a long time. I wouldn’t choose to be anywhere else, doing anything other than what I am doing. I just want you to be comfortable. You are my love.

I’m going to sleep now. Are you? he asked.

No. I’ll clean up, get into bed near you, and read. I’m here with you all night. I’ll put on classical music for about ten minutes.

Okay. Make it fifteen minutes, John said quietly as he closed his eyes. I kissed him and held my cheek next to his warm cheek. He was off to sleep, and I was wide awake, mulling over what he dictated to me as I sat and held his hand just as I did with my daughters when they were little and not feeling well.

John was lucid, articulate, and knew exactly what he wanted to say. Did those words just come to him? Had he thought it over? Was he at peace? Did he think he was dying soon? I lay in bed, and that feeling I have occasionally had during the last few years came to the front, demanding my attention. This time, it had a voice: John is leaving, and I will be without him. But I told myself he still had time left. I was hoping for a few months, at least. There was time ahead, I assured myself. The hospice nurse told me she thought John could be here a few more months. How could she really know? But why did he say what he said? Was he telling me he feels death coming now? I cried softly.

John slept all night. That was unusual. He did not wake, asking for Biofreeze on his feet, shouting that he was under a car, or asking if I was there. He just slept calmly.

Virgie arrived before John awoke. I felt uneasy about leaving, but John said he wanted a hamburger and some ice cream for dinner. I was delighted as he was not eating much the last week. I planned to get some ground round, make the burger, mush it up, and give John a little, along with some mashed potatoes and the ice cream. I was excited that he wanted a specific food to eat, even if only a few small pieces. I had to go to the store anyway, so I told Carol and Susie I would meet them for a short get-together for coffee and then go to the grocery store and would be back soon.

John, I’ll be out just for a short time to get some groceries and see my pals for coffee, and we’ll have a date tonight, OK? I said.

John looked at me and took my right hand in his left hand. He gently squeezed it.

Say hello to your friends and come back soon, he said.

I drove to The Southern to meet the girls, feeling anxious, and as soon as I arrived at the restaurant, I texted Virgie, and she texted back, sharing that John was falling asleep despite her trying to keep him awake. I told her I would be back soon. Once the girls arrived, I had a cup of coffee, shared what John had told me the night before, and said I felt uncomfortable being away. They understood. I left.

I quickly went to the store, still planning on dinner and a date with John. When I returned, John was awake, lying in bed, watching a nature program. Virgie said that once John woke up, he was unusually quiet and had been asking when I would be back, and she told him soon.

Hello, my sweet. I’m back and have our dinner for tonight, I said. I kissed John, and he kissed me back.

I’m glad you’re back. I missed you, he said.

Virgie and I briefly talked as John closed his eyes on and off. We discussed the schedule for the coming week as though nothing had changed, but we both knew that John’s condition was changing more rapidly than we acknowledged. As Virgie was getting ready to leave, packing the bag she always brought, John opened his eyes and seemed wide awake.

Sir John, I am leaving you to your wife for now and will see you on Monday, Virgie said, smiling. John smiled back, waved to her, and threw her a kiss with his left hand. It was about 3:00 p.m. I planned to make dinner at about 6:00. I found another nature program, got some coffee, and sat beside John. I periodically touched his hand, which was warm. The house felt cool despite the temperature being set at its usual degree for this fall weather. I set the thermostat a degree higher but wondered about the cool feeling I was having. John was warm. I settled into the chair next to him as he was propped up in bed and seemed to be watching the television until I noticed his eyes closing.

John, do you want to take a nap before dinner?

Yes, just for a little while, and then you can wake me up.

Okay. I’ll turn off the TV, and you can sleep for a while. I will be here with you until we have our date. I love you, I said. We kissed.

I love you, Candace, John said in a voice that was close to a whisper.

And I love you, I replied.

At six thirty, I tried to rouse John, hoping he would eat a few bites. I could not get him up. He was calm and warm, and his breathing seemed normal. I kissed his forehead, called his name again, stood, and looked over him for a few minutes. His lips were smooth, not pursed, his cheeks were light pink, and his facial muscles were relaxed. He was so handsome. He was warm from his feet to his hands. He seemed to be sleeping, but I had a sense bordering on fear that he would not wake up. I felt a heaviness in my chest that came from the fear. I told myself that John would wake up, we had a date, he just told me he loved me, and this could not be the end. But that fear was lingering.

I texted Leahruth, suggesting she come here soon. Then I texted Stephanie, who was living in California, and told her to call me when she could. About ten minutes later, she called.

Mom, is something wrong?

Dad is sleeping peacefully, but I … I just think you need to come home as soon as you can. I cannot wake him up now. I’m unsure what that means, but I know you should come home. I’m so sorry.

Okay, Mom. I’ll get out of here as quickly as I can. I’ll let you know when I’m coming in. Tell Dad I love him, and he is to wait for me.

I will.

I called the hospice service after I called Stephanie. I asked for our nurse to inform her of what was happening. I was told Nancy would not be available until Monday, which bothered me as I had expected that I could reach her if the end of life were near, and I thought it could be. This was the only time I truly needed our hospice nurse, who had started in June, and she did not come through. The person answering asked if John was calm and breathing normally, and I told her he was. She said if that changed or if I wanted someone other than our regular nurse to visit, call her back. I felt calm about monitoring John on my own and did not want a new person here. I knew how to give him the morphine if he became agitated. I called my sister, and she was calm and reassuring. She said she would let the family know what was happening.

Virgie came on Sunday for just a few hours. John stayed the same: no agitation, warm, clean, and sleeping. Virgie washed John, changed his pillowcases and oversheet, sat with me, and talked. She was sad as she had developed a deep love for John and our family. I told Virgie it was OK to leave midafternoon and I would update her. Knowing Virgie was available was more comforting to me than hospice at this point. I kept family and friends informed of what was happening. Leahruth and I sat next to John and checked to be sure he was dry, and we started putting moist mouth sponges around his lips and the inside of his mouth.

Stephanie was arriving early in the afternoon.

Mom, will you be OK if I pick up Stephanie? Leahruth asked.

Yes, Dad is calm, and I’m fine for now. This will give you time to tell Stephanie what’s going on, I responded.

After Leahruth left to get Stephanie, I wondered about their conversation once Stephanie got into the car. Leahruth would have to tell Stephanie that her dad is dying. I told myself that their discussion would be only for them. It would inform their relationship from now on. I didn’t ask about it.

Leahruth picked up Stephanie from O’Hare late that Sunday afternoon. Stephenie ran into the house, hugged me as I walked to the front door to greet her, and raced to the back of the house to see her dad.

Dad, your Stepharoo is here. Mom, Leahruth, and I are with you now. We are family, Dad, Steph said quietly as the well-formed tears dropped from her eyes. I love you, Dad. I’m thinking about all the races that you came to and ran with me. How could I have become who I am today without you? I’m here now to help you finish this great race you have been on, and we will cheer for you all the way, she said as she turned to me. Mom, what’s going on?

All I know is what you see. Dad is not waking up. The hospice nurse is coming tomorrow. I called hospice, and they said just to monitor him, which I am. I think he hears us or at least knows we are here. I can give him morphine if he needs it, but he seems calm. If we note any agitation, I’ll administer the proper dosage.

I thought Dad would be here until Christmas. I should have come sooner, Steph said.

Steph, we are all doing what we can, groping at times. It’s nothing for you to feel bad about. You are here now. You have been home a lot, and you always talk to Dad.

Dad knows that we’re here, Mom. I think he is up to something, Leahruth said.

What do you mean, ‘up to something’? Steph asked.

Remember how, whenever we had our races, Dad would say, ‘Have a plan’?

Yes, he always told us to plan for the unexpected and to know what to do, Stephanie responded.

Dad, what are you up to? Leahruth said to John as she touched his cheek with her cheek.

We spent the rest of that night touching John gently up and down his legs and arms, around his face, and talking. After much prodding from me, the girls finally went to bed, and I promised to call them down if anything changed. I lay down in bed and rested as I could not sleep. I wanted to be ready if John became agitated or something changed. It felt like I was going downstream in a boat on whitewater rapids and was fatigued, but I could not rest because if I did, the stream would overtake me, so I had to keep maneuvering around the rocks and water. I thought about the whitewater rapids on our drives from Boise to Sun Valley years back, and that memory calmed me down. There was no time for me to fall asleep. All I could do was enter the top layer of sleep, still aware of what was happening.

When the girls came down at about six a.m., I made coffee, and John was sleeping. I had tried to wake him and could not.

Has Dad been sleeping all night, Mama? asked Stephanie.

Yes, he has, and he seems calm, I responded.

Should we call hospice? Leahruth asked.

Nancy is coming this afternoon for her check-in, so I don’t see any need to call unless Dad gets agitated. I’ll give him a dose of the morphine as I was instructed, only if he’s agitated. For now, I suggest we use the sponge on Dad’s lips, a warm cloth on his face and hands, and then have our coffee.

I’ll get the sponge and cloth, Leahruth said.

OK, I’ll get us all coffee, said Stephanie.

Stephanie leaned over John and kissed him.

Dad, I hope you can hear us. We are here with you, and we are not going anywhere, she said as tears welled up in her eyes.

And you are getting some coffee on your lips, Dad, unless you wake up and can drink it, okay? said Leahruth. She brought over a cloth, a sponge, and coffee.

Leahruth took the sponge out of the glass, wiped John’s lips gently, reminding me of what she did with her favorite doll, Big Baby, and dipped the other sponge in the coffee. She wiped it to squeeze out the excess and rubbed it over his lips. She stood there looking at her dad and holding his hand.

Mom, Dad will wake up, won’t he? asked Leahruth. Her eyes were welling up with tears.

Honey, I don’t know, but I think he’s getting ready to leave us, and he is hearing us. I know he tasted that coffee.

We sat and drank our coffee and tried to remain calm. I called my siblings to give them an update, and they said they would pass the word on to the rest of the family. I texted a few friends to provide updates as well. The kids were on their phones doing the same. We put on classical music, and we all used our quiet voices, unusual for this group, as we sat with John.

Virgie came at about 8:00 a.m. We filled her in on what was happening since she left on Saturday afternoon when John was awake but sleepy. We had coffee together, and then Virgie wanted to check John to determine if he was dry and clean. The kids suggested that I take a shower while Virgie did her work. I agreed and left the room with the kids, who went with me upstairs. Looking back, I wonder how we were able to converse and drink coffee as if this were just a lovely get-together when what we were doing was being with John as he was dying. Maybe that was the key. We knew what was happening and didn’t want to make it a grueling waiting game. Instead, without knowing it, we fashioned a way to make the end of John’s life calm and respectful.

Once I came back down, I sat with Virgie and John. He continued to be calm but did not wake up. The hospice nurse was coming at about 4:00 p.m., and I suggested Virgie leave at 3:30 and return in the morning. Virgie offered to stay all night, but I assured her that the girls and I would be fine and that I would call her if anything changed.

The hospice nurse came. We filled her in on what had been happening, and she took John’s vitals, checked for mottling, and paid particular attention to his breathing, which she told us sounded normal. She said she saw no signs of mottling, an end-of-life condition when purple or reddish spots appear under the skin from the toes to the upper legs and arms caused by the heart’s inability to pump blood as it should. She went over the morphine routine once again, showing the girls and me how to administer it in John’s mouth on the side of his gum. I asked her how long John could be without food or water, and she said she thought John had only a few days left. She never offered to have a hospice nurse here all day, and we didn’t want them here anyway because we were confident we could manage and would use the morphine as necessary. However, I would have appreciated her offering. I told her we would call if necessary. Her next scheduled visit was on Wednesday, and when she left, I did not know if I would see her again.

Monday night, John continued breathing normally.