Tag Archives: hospice

Truth. Lies. Priceless Memories.

When I was young, I never dreamed that one day, fibbing to my mom would be better than telling her the truth. Instead, I strived to dodge that age-old, childhood taunt: Liar liar pants on fire.

I’d be lying now though if I said that fibs never crossed my lips. In fact, before I aged into double digits, I would silently breathe that insult to myself whenever a Catholic priest slid open the panel that separated us inside a confessional. Gazing through the shrouded window at the shadowy figure opposite me, I always spoke in a hushed tone, praying that whoever sat on the far side of the confessional could not hear my litany of sins, including my lies.

Karen Antonietti First Communion 1963
First Communion 1963

I recited the same list and assigned a corresponding number at every telling. I fought with my brothers and sisters nine times. I disobeyed my parents seven times. I lied eight times…Though I did not keep a tally, I was certain some of my infractions numbered ten or more. Hence, liar liar.

Fast forward fifty-some years.

I hunkered in assisted living with my eighty-nine-year-old mother after she broke her pelvis in October 2020. Her senior living community was on lockdown due to the COVID-19 pandemic, but I was allowed to be her essential caregiver during her rehabilitation period. Throughout my fourteen-plus week stay, her bones healed. Sadly, her dementia progressed.

Mom’s grasp of reality fluctuated. Sometimes she knew who I was. Other times, she thought I was her friend Shirley. One afternoon, my sister Laurie called while Mom and I were eating lunch. During their conversation, Mom said, “No, Karen’s not here.” She listened to Laurie for a moment, then turned to me with a quizzical look and asked, “What’s your name?”

“Karen,” I said.

Her face softened into a smile. “Oh, you little pup!” she replied, and her words and mirth made me laugh. 

"Shirley" Karen Buley and mom, Kay Antonietti in assisted living, January 2021.
“Shirley” and Kay January 2021

Most days, Mom remembered that our Papa had died. The large, foam-backed banner that sported his picture, birth and death dates, and the words, “Forever In Our Hearts,” was propped atop her dresser. When she made loops with her walker, she’d often smile and say, “Hi, Pops,” throwing in an occasional, “Pray for us.”

After she regained her strength, we made weekly outings to a coffee shop drive through on our way to visit Papa’s grave. On the fourth anniversary of his death, we were parked in our usual spot at the cemetery. “I haven’t seen your dad in a long time,” she said. Sorrow laced her voice.

I replied with the gentle words that had softened her sadness when I’d needed them before. “Papa’s in heaven.”

“He died?” she wailed. “Oh, Dan. What did I do to you? I’m so sorry…”

I longed to dial back my words.

@kmbuley

Therapeutic Fibbing softens the ache when your heart is breaking into a million tiny bits. #memoryloss #dementia #alzheimers #familycaregiver #dementiaawareness #motheranddaughter #fyp #dementiaadvocate #memorycare #livingwithdementia #caregiverlife #vasculardementia

♬ Classical piano performance “letter to parents” – Popolony

I had recently learned about “therapeutic fibbing”—bending the truth to match her reality—and “redirection”—shifting her focus. In hindsight, I desperately wished I had used one of those techniques that day and struggled to give myself grace.

Two-and-a-half weeks later, the senior living community hosted a reading and author’s chat for my novel Perimenopausal Women With Power Tools. Mom sat in the front row, alternately beaming and dozing. Guilt haunted me, knowing that, like my protagonist, Beth, I too was harboring a lie of omission—“the worst [kind],” according to my eighteen-year-old character, Kate.

Unbeknownst to my mom, she would be moving into memory care the following week. I’d stay with her for two days, then return home. My heart was breaking.

I spent several fitful nights lying beside her in her queen-size bed, agonizing about leaving and wishing for clairvoyance. If I knew Mom’s days were numbered, I would power alongside her until the end.

But then moving day arrived. I chased sleep for two nights in memory care, tucked into a rollaway at the foot of her twin bed. Every cell in my body ached at the thoughts of saying goodbye.

I waited until the last minute to tell Mom I was leaving. She was in the living room, watching a musical with several of the ladies. I said quiet goodbyes to staff and some of the residents, then squatted in front of her chair. I still had vacation time, plus hadn’t dipped into the Family and Medical Leave Act, but I couldn’t admit that staying and watching her decline was so damn hard. Instead, I lied and said, “I have to go back to work.”

“You do?” Anguish filled her face, and her eyes puddled as she grabbed my hands.

“I do.” I straightened, then added “I’ll be back,” and kissed the top of her head through my mask. “I’ll call you when I get home,” I said, knowing my standard words were a fib now too. “I love you,” I managed, unable to stop the quiver, but turning before tears streaked my cheeks.

I did go back, including for a weeklong stay and some other overnights throughout the next twenty-six months. During that time, Mom graduated from hospice care twice, then was referred a third time the day before she died. I was blessed to be at her bedside when she exhaled a final, peaceful sigh.

In truth, I’m grateful for more than sixty years of memories.

Kay & Dan Antonietti 1995.
Kay & Dan Antonietti 1995

I’m also grateful that, whether my mom is somewhere over the rainbow or on the other side of the veil, her journey through dementia is over and she’s living her new, best life.

Two-and-a-Half Years and Counting

I have written snippets about my mother’s journey through dementia and am proud to share “I Was Really Scared Last Night” which was recently published in Please See Me. An online literary journal, Please See Me’s mission is “to elevate the voices and stories of vulnerable populations, and those who care for them.”

When I visited my mom a couple of weeks ago, she greeted me with an “Oh my God,” as I bent to kiss her cheek.

My mother, Kay Antonietti.
Kay Antonietti, cuddled under an afghan from a hospice volunteer December 17, 2022

And this week, after demonstrating an upswing, she graduated from hospice care. Her heartrate has normalized, she is more awake, her appetite and ability to feed herself have improved, and she has more frequent episodes of coherent speech.

Her eyes still hold their sparkle, and every day with her is a gift.

I grieve my father. I grieve his beloved country more.

My eighty-nine-year-old father died on January 5, five days after breaking his hip. He was scheduled for surgery January 3–delayed until his body cleared blood thinners—but worsening congestive heart failure declared itself early that morning. “I’ve had a good life,” Dad said, voice breaking after hearing that his body couldn’t tolerate surgery, that we’d keep him comfortable until his reunion with an army of family and friends in heaven.

My mom and I ordered his breakfast, our thoughts shifted from hoping he would make it through surgery without complications to anticipating the logistics of in-home hospice care. When the first of my siblings arrived, Dad told her, “When the going gets tough, the tough get going.”

Inducted into the Butte Sports Hall of Fame in 2009 for his teenaged boxing prowess, we didn’t know whether those were fighting words or a reference to heaven. Fighting words, it turned out, when he mentioned his caregiver soon after: “Maria’s going to have a job.”

Dan Antonietti. A fighter until the end.
My dad, Dan Antonietti, wearing his favorite WW II Veteran cap.

The hospitalist switched him to oral morphine, which relieved Dad’s pain without the sedation of IV Dialudid. He had a glorious day: visiting with Mom and six of their eight children, talking and singing on the phone to grandchildren, and visiting with Maria.

A champion of veterans’ rights, he had planned to testify on their behalf twenty-three times at the Montana legislature this session. Now, instead of Mom being chauffeur and copilot as he navigated the Capitol halls with his walker, Dad dictated testimony from his hospital bed for her pinch-hitter appearance. He talked so fast, it took two of us to take notes.

“Madam Chair and all members of the State Senate Veterans’ Affairs Committee:

For the record, my name is Catherine Antonietti, wife of Dan Antonietti, who is in the hospital and unable to attend this legislative session. He is a member of Post 1448 in Butte, Montana, which is a mile high and a mile deep and all the people are on the level.”

He grinned, then continued in his own words.

“I was the Legislative Chairman of the Veterans of Foreign Wars at the state and national levels.  I voted yes for all legislative bills for the last sixteen years and I continue to cast my vote for every veteran’s bill held in this legislature. I’m glad to see you all back. Thank you, Madam Chair. You’ve all been a big help and I am proud of all of you.”

I fought back tears at his tender words, thinking how proud I was of him. Laughter followed when he said he wanted a beer, then asked for ice cream instead. We told him he could have both. “Just ice cream,” he said. “The kind I like.”

Two sisters went on a grocery run, returning with a half-gallon of ‘Mocha Me Hoppy’ and beer—just in case. Dad had three servings of ice cream that afternoon and evening. He had a couple of bites the next morning, which turned out to be his final meal. He began a steady decline, transitioning from oral morphine to a continuous IV infusion by the time the hospice nurse and social worker arrived for a family consult the following morning.

They asked if we wanted to go to a conference room. Dad hadn’t talked or opened his eyes since the previous evening, but they reminded us hearing was the last to go. We said we wanted to stay.

The nurse listened to his heart and lungs, then said it might only be hours before he passed. She talked about end-of-life care and offered condolences. The social worker did too, lingering to take contact information for bereavement follow-up—offering thirteen months for any or all.

She suggested one-on-one goodbyes with Dad and, after she left, we exited the room so Mom could go first. All eight of us and one brother-in-law followed. Dad’s brow wrinkled in concentration. He didn’t open his eyes, but he moaned and moved his lips. I felt his words in my heart. He died peacefully eleven hours later.

As we reconvened the following morning to discuss funeral plans, Vice President Biden and Congress met to formally count electoral votes. That morning I read factual news, not fake, about fifty-plus ineligible Republican electors—ineligible because they didn’t live in their Congressional Districts, or because as elected officials, they were barred from being “dual office-holders.”

Days earlier, I had contacted numerous senators and representatives, urging them to object to electoral votes because of voter suppression, Russian interference, and because electors’ requests for a briefing on foreign interference had been denied. That morning, I called Montana’s three Members of Congress again, pressing for objections based on this new information.

I felt joyful driving to the mortuary. I imagined Dad and his fellow warriors working the Democratic Caucuses from above, particularly Senator Tester who had known and respected him for his veterans’ advocacy. I sang en route:

Papa Dan, you are the man, you’re up in heaven to take a stand to help change the history of our country. The country you loved and fought hard for, Donald Trump will be no more president-elect of this, our great country. Hallelujah, Hallelujah. Hallelujah, Hallelujah.

I knew my chorus of angels might be hypothetical, but I believed the Democrats would fight for justice. Constituents had urged objections for weeks. President Obama had imposed Russian sanctions. Fifty ineligible electors tipped the scale.

I checked my phone when we broke to look at caskets, certain that Colin Powell’s three electoral votes would multiply and he would be elected President. Premature I knew, because objections, debates, and subsequent votes would take time, but I checked again before we segued to our meeting at the cathedral.

An hour later, I read the devastating truth in a grocery store parking lot: not a single senator objected to the votes.

Dad emboldened me with the motto: “You can’t win if you don’t try.” Numbed by the Senate’s inertia, I didn’t cry until driving one hundred twenty miles the next day to pack for his funeral. Angry tears spilled down my cheeks. I cursed Democratic senators and told them about my dad.

He was a fighter. Not a quitter. His dad died when he was ten. Butte-tough, he was a fourteen-year-old featherweight champion. He would have excelled at other sports, too, but he had to work to help support his family.

He was a WW II Veteran. He enlisted in the U.S. Navy in 1945, but was honorably discharged after breaking his back in a car accident. Determined to serve his country, he enlisted in the U.S. Army in 1946 and served in the post-war occupation in Japan.

He was a Blackfeet Nation Indian Chief. Honored for his role in securing programs and funding for the Blackfeet people, he was adopted into the tribe in 1972 and given the name A-pi-na-ko Si–pis-to: “Morning Owl.”

He liked Bernie Sanders. Days before he died, he said to me, “I wanted to vote for Bernie but you said that would be a vote for Trump so I voted for Hillary.” He was heartsick that Hillary won the popular vote but lost the Electoral College.

He loved his country, and was proud of his legacy. Seventeen grandchildren. Five great-grandchildren. He wanted to make their world a better place.

But not one of you Senators put up a fight.

That morning, I talked with a lifelong friend. She said one good thing about Dad’s death was that he would not have to see Trump get inaugurated. We shared our hope that her eighty-six-year-old dad wouldn’t either. After nine months of hospice care, he died peacefully four days later.

On January 21, she, her daughter, and I marched in the Women’s March on Montana, carrying our special angels in our hearts. We toasted them afterward with my mom and sister—reveling in memories of two proud Americans and their lives well lived.

Weeks since we said goodbye to my dad, I miss him. I am grateful, too. Grateful that during his graveside military honors when Mom was presented a medal and the words, “On behalf of the President of the United States . . . ,” Barack Obama was President. I am grateful Dad is not here to watch Trump unravel the country he loved, the country he fought for. Most of all, I am grateful he is pain free and resting in peace. Continue reading I grieve my father. I grieve his beloved country more.