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Tag: end of life

Sound Words

My parents called a family meeting to order. They had hired an attorney to help with those end-of-life documents that are awkward, with potential for conflict, yet essential and dreadfully serious.

Mom said, “Your dad and I wanted to do this while we are of sound mind. . .”

My two sisters, my brother, and me chimed in unison, “Too late.”

The meeting was off to a fine start. One of us asked if a secret family fortune was about to be revealed. My older sister asked mom who was going to have to accept “custody” of her ugly orange dishes. My younger sister asked who would be responsible for cleaning out the back bedroom in the basement. We all laughed, and it wasn’t a nervous laugh. It was genuine; all around the room. Mom and Dad had been great parents.

Then Dad, who was in the earlier stages of Alzheimer’s at the time, said something both funny in the way he said it and eerily sad in its reality. “I don’t want anyone to pull the plug on me. I don’t ever want to get plugged in.”

I felt five sets of eyes turn in my direction, even before being told I was to have power of attorney over healthcare for my parents.

I loved Dad as much as any of my three siblings, but Dad and I were often the source of uncomfortable conflict during family gatherings. Among his four children, I was the one he could count on to feed drama into a discussion of politics, religion, or the weather—if that was the only topic left on the table.

The two of us had the perspective that what was taking place was a debate. We thought the weaker, less competitive, and less interested family members had dropped out. But to the casual observer, Dad and I were arguing, and the battle for who could support their stated facts or which one of us could say it best or loudest was about to close out a holiday or otherwise happy family occasion.

There was never a concern that my father didn’t love me or that he wasn’t proud of me. Over the years he’d kept friends and coworkers apprised of my accomplishments, and plenty of the stories he’d told found a way back to me. I’ve heard a dozen times (or more) about the time he was in the emergency room and wanted his daughter, the nurse, to come down from the 7th floor cardiac unit to see how badly his groin was burned. The guys at the factory where he was injured got a kick out of that one.

Dad’s physical health had been excellent, but once in a while he would mention a pain or anomaly. I’d do a nursing assessment, maybe grab my stethoscope and give his heart and lungs a listen, but then my usual recommendation would be to have his doctor check it out. He’d grumble and say, “If that guy can’t see it on an x-ray or charge me a bunch of money for my blood, he won’t be able to fix it.”

The first time I exercised my power of attorney over Dad’s healthcare was at the office of that same physician. “Oh. So you’re the daughter. The nurse. Your dad never wants to take my advice until he runs it by you first.”

There was no lack of love between my dad and me. We just hadn’t used words to express it.

The signs and symptoms of Alzheimer’s complicated life for our elderly mother long before the rest of us realized this wasn’t Dad being his difficult and usual self. The four of us kids eventually came to the conclusion that Mom wasn’t safe at home alone with Dad and that Dad needed care outside the home. There was a minor crisis and, soon after, we placed Dad in an assisted living facility.

Mom visited him as often as she could and stayed for as long as she could stand his constant questioning, “Why do I have to stay here? When can I go home?”

I visited often, but my visits were short. Alzheimer’s hadn’t taken Dad’s ability to stir up an argument. Sure, it was “the disease” doing most of his talking, but the accusations were coming out of my father’s mouth and they cut through my heart.

“You finally got your wish!” “You never took me at my word. I’ve always had to prove myself to you!” “Don’t you worry! I’m fine without you!”

He used curse words that I’d never heard pass through his lips. He called me names.

I could have gone for weeks without seeing the man whose brain had been attacked by this disease, except I was the one to manage his healthcare, including setting up his daily medication.

“Just shoot me now,” he mumbled as I walked out of his room one afternoon.

It angered me that he would stoop to that sort of emotional manipulation. But my gut wouldn’t allow me to digest those words. This was the moment Mom had prepared for when she made that appointment with an attorney. I was not so prepared.

I turned around, stepped back into his room and said, “If I didn’t love you, I would.”

“You would do what?”

“Shoot you,” I said. No emotion.

He smiled—one of those questioning, hesitant smiles that you’d recognize if you knew my dad.

“I love you too, Rita.”

I sat on the side of his bed and took his hand, pale and wrinkled, but his grip was still strong. The hint of calluses from his guitar-playing days helped me to know this was my dad. If his heart and lungs had been transplanted, if some body parts had been amputated, or if his face was unrecognizable, he would still be my dad.

After that, I made a point to tell him I loved him at least once during each of my visits. It hadn’t been something either of us had said often. He started responding with “I love you too, Baby.” But sometimes he’d say my name, and sometimes he’d say it first. If I was there late at night, or if he was snoozing in the afternoons when I went to set up his medications, I would be quiet while I did what I needed to do and then whisper the words on my way out the door.

The lights were dim one night, and I had some trouble opening the lock on his pill box. I dropped the key and had to move a chair to retrieve it. I grunted in frustration, but Dad seemed undisturbed. I stubbed my toe on his over-bed table and created a chain reaction of clumsy noises.

“Who is that?” he asked.

“It’s me. Rita.”

“Did you come to tell me you love me?”

I stated a partial truth, having had some practice answering his questions in my teen-aged years. “I did.”

“I hope you don’t go around saying that to just any man.”

“You know I don’t. You taught me better than that.”

I pulled his blanket up to cover his shoulders, although he was still capable of doing that for himself. And I made sure to place his insulated water mug within an arm’s reach before I stepped away.

“Thank you,” he said. “You know I’ve always loved you.”

Genuine words, I thought, and sound words coming from a man who hadn’t been of sound mind in years. He reached a hand out from under the blanket I’d just straightened, and I accepted it.

“You’ve always been the prettiest and strongest woman in any room,” he said.

Sound words, but they weren’t intended for me.

I couldn’t say my usual “I love you, Dad.” It didn’t seem the right time to re-orient him. It was clear he thought I was my mother. Anyone who knew my dad knew he thought she was the prettiest and strongest woman alive. He’d said those very words many times.

I’d had a long day at work. The hour was late, and I hadn’t the energy to settle him down after reminding him that Mom had passed away weeks earlier. The other residents were quiet, and the staff was busy doing their nighttime tasks. I thought, let the old man see and believe what he wants.

When I’m in my old age and enjoying a moment with the love of my life, real or imagined, please don’t take that away from me.

But when Dad reached out with his other hand, pulled me close, and puckered his lips I knew what I couldn’t let happen. I turned my face so that a wet kiss, that lasted a little too long, landed on my right cheek.

A streak of meanness came through my sound mind and caused me to say, “I love you, Dad.”

The look on his face! He’d had a moment of sound mind. Maybe his last. I’d “plug” my dad in long enough for one more exchange of sound words if that were possible, but before another one of those kisses, I’d pull the plug.

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