Focus on Caregiving: The Last Hug

August 1, 2010 by  
Filed under Caregiving, Emotional Wellbeing

We’d been expecting this for at least twenty years. So why did it still come as a surprise?

The first call for the final call came from my little brother. “He’s stoking,” he said.
“What’s that?” I asked.

The nurses had provided my brother with a list of the signs of approaching death, and he read the clinical description of Dad’s stoking over the phone:

“Patient takes many short breaths and then stops breathing.”

Then some words of comfort for the family reader: “The patient isn’t suffering. He is storing up energy.” For what, I wondered.

I sat listening to my brother in an ill-lit conference room surrounded by videotapes of teens from around the world talking about sex, drugs, rock ’n roll, and their hopes for the future. I was two weeks into a new job. My computer screen glared at me.  Piles of papers representing the five major regions of the world were stacked on the left.   Manila and green hanging folders were strewn to the right. ‘Stoking’ sounded like something a kid in Los Angeles, Buenos Aires, or Bangkok would do on the weekend.

Newly needed tortoise-rim glasses pushed my hair out of eyes that were reddening more with each word coming over the phone. Huddled over the receiver I asked, “Should I come home?” “I don’t want to call you home for another false alarm,” my brother said. “The nurses say he may go anytime, but then, he wasn’t supposed to make it home from the hospital the last time.”

Of course I would go. I had run home when Dad swore an electric current traveled through the telephone and shocked him to the floor. I traveled again to witness a head-to-toe body bruise he swore he suffered when another current traveled through the toilet bowl and unseated him.

“Dad, “ I sad, “that’s the most ridiculous thing I’ve ever heard.  Really, how could that happen?”

“Julie,” he responded, “water conducts electricity.”

That is true.



Cover, On End of Life Care, National Institutes of Health, 2006.






We gathered around his bed in the assisted-living facility, the place he hoped didn’t smell like urine. He had a very sensitive nose. The assisted-living residence didn’t smell, yet.  It was a small facility, less than a year old, that fit quite nicely into the Tudor architecture of its suburban location.

Five children and their assorted spouses, a wife, nurses’ aides and an oxygen tank were hard-pressed to fit into Dad’s bedroom. His furniture was hard-pressed to fit, too.  To seem as much like home as possible, it held as much of his furniture as possible.  There was the burled-walnut executive desk with the taller-than-Dad, palomino-colored leather desk chair, a bureau with a masking-tape label on each drawer describing its contents, a night stand and a green plaid club chair that had to be moved to open either the closet or bureau drawers. The oil painting of two Italian boys fishing hung over his bed. He repeatedly told us, “Make sure you get this out of here before I die. You know all the pictures in the hallways are from dead people’s rooms.”

Mom, stroke-impaired and a resident too, faded in and out of Dad’s room. “He doesn’t want me here,” she would say, or “I don’t want to be in there.” At that, she would go off to her own furniture-packed room next door, decorated in pink and green florals.  Sometimes she stood outside his bedroom in the multi-functional anteroom with the white kitchen cabinets, the dorm-room fridge stocked with dimpled fruit, applesauce, Jell-O and popsicles, and ask, “What’s going on?” We took turns tending to Mom, trying to explain that Dad was sick, very sick. “Oh yes, I knew that,” she would say. And he might die, we would tell her. “Oh that’s awful,” she would reply.

He tried to talk, but first he had to pull the oxygen out of his nose. Then he would need it so badly that twelve hands tried to put it back in. Poor guy, trying to enjoy his family all gathered in one place for the first time in years, and all he got was people moving his covers, staring at his toes (blue from poor circulation), tearing his paper-sheer skin and remarking on the size of his bruises. A minor bump or even a light touch left a visible mark. A grunt and a disgruntled look told us to stop poking and probing so much.

It was frigid outside. Just another typical gray, bleak, January day in Dayton, Ohio. It was so hot in Dad’s room that we’d all stripped to our barest appropriate attire. And someone ate ice cream. Dad noticed, gestured and grumbled towards the treat. He wasn’t allowed to eat or drink, not even suck on an ice cube. His last mini-stroke took away most of his swallowing reflex. Still, since when does “Do Not Resuscitate” mean “Do Not Feed?”

We all took this display of appetite as a sign that he was getting better. To heck with the rules, when the nurses’ aides left, my oldest brother went for the peppermint ice cream, stocked in the nursing home ice cream parlor just for Dad. I tried feeding him small bites, reminding him to swallow and hoping that the correct pipe closed at the right time. “Damnit, Julie,” he said and pulled my spoon-holding hand to his cracked lips, so he could get a mouthful. He was very alive then.

Around his bed we stood. On his bed we sat. Around Dad wrapped in blankets and stuffed with breathing tubes we trod unfamiliar territory making stupid conversation. Dad’s glassy, wet, red-rimmed eyes tried to catch the last person talking. He garbled responses, agreements, disagreements and non sequiturs between naps.

“What did you say, Dad?” I asked leaning so close we were almost touching noses.  “Let me take off the oxygen so you can talk.” His hands reached up as mine reached for the tube. He looked far away but pulled my face in with a hand on either cheek and gave me a kiss.

The next morning, Dad was up and dressed, sitting in his wheelchair. Ha, the doctor had said it wouldn’t happen. They were letting him eat porridge. He wore a University of Dayton Flyers baseball cap to keep his bald head warm, an old button-down sweater with missing buttons, a flannel shirt and a sweater vest, new gray Dockers, a blanket over his lap and no socks. They were bad for his circulation. I blabbered.

“Dad you look great.”  
“Look at you, up and eating.”

“Did you have a good breakfast?”

I explained that I had a new job and since he looked so good I was going back to Chicago and would be back next weekend. He smiled his crooked smile of approval. We kissed. I touched his face, smelled the Brylcreem in his hair, rubbed his hands. I was on my knees trying not to look at his feet. Stared into his eyes and made a connection. I gave him one last hug and felt his bones through all the layers of clothing. We said our “I love you”s.

The next day the phone lines between my siblings hummed: 
“He’s Mr. Nine Lives.”

“He just wanted to say good-bye.”

Then someone confessed, “If he dies it’s my fault because I gave him permission.”  Then the rest echoed, “Me too.” “Me too.” “Me too.” “Me too.”  Seems we had all heard Bernie Siegel say that you have to give loved ones permission to die sometimes, or they would linger for the living. It was the ultimate guilt trip that none of us wanted.

My little brother, the one living in the same town as Mom and Dad and bearing the brunt of their poor health, called and asked, “What should I do?”

“Keep talking to him,” I said. “Go in there and hold his hand. Remember the death-signs pamphlet said the last things to go are touch and hearing. God knows, Dad’s already lost his hearing, so I think he should respond to the touching.”

“I’ve done that, “ John said. The choking back of his tears came softly over the phone, “I sat on his bed, hugged him. I told him he was the best Dad any son could have, that he was always there for me, that I was proud of him and loved him.”

“What did Dad say,” I whispered.

“I’ve been hearing a lot of that lately.”

Dad died one week after our last hug, after hearing me say, “I’ll be back next weekend, feel better, love you.” But I didn’t go. My brother suggested that I delay my visit for another week until he and his wife would be on vacation. I agreed that it made sense to divide and conquer the caretaking.

Dad died in his sleep on Super Bowl Sunday. My brother watched the game in the room next to his. I watched it with friends in a Chicago pub called Charlie’s, not interested in what was happening on the gridiron but not wanting to sit in my condo alone. I wish I had made the trip home, but chances are, I would have been watching the game and not keeping vigil at Dad’s bedside. That is what I tell myself.

Super Bowl and Dad are forever linked in my mind. Super Bowl Sunday is not about high-pressure football, expensive television commercials, or half-time extravaganzas. It’s about me passing time in a place named Charlie’s, when my Dad, named Charles, passed away. It’s about remembering Dad. I think that might make him smile.