“Your family is very stimulating.” – holding tight and letting go

For Thanksgiving, Tony and I enjoyed a traditional dinner in a basement bar. A short walk from our apartment in Santiago, Chile, the Black Rock Pub was packed with gringos gorging on turkey and stuffing (or in my case, a vegetarian plate overloaded with sides). As we shoveled green bean casserole into our mouths, we took turns expressing gratitudes.

It was mostly the usual stuff. We’re grateful for each other, our families, our friends around the world, our new Roomba robot vacuum … but I’m most thankful for something I had actually hoped to avoid for awhile longer: saying good-bye to my dad.

  • I’m thankful that my school released me to spend a week in Florida.
  • I’m thankful that my siblings were all there. Megan drove six hours; Kate flew down from Michigan; and Mike made the long journey from Abu Dhabi. 
  • I’m thankful for the neighbors and friends who distracted my mother and filled the fridge with food.
  • I’m thankful for the wisdom and kindness of the hospice nurses.
  • I’m thankful that his suffering was relatively short-lived.

Really, there was so, so much to be thankful for.

About two years ago, my dad contracted a debilitating cough, but doctors couldn’t find a cause for it. Inexplicable fluid retention bloated his belly and made him miserable. Angry purple bruises appeared after a minor bump into a door frame or a smack of his shin on a table leg. Blood work, CAT scans, MRIs … tests, tests, and more tests. Finally, a bone marrow biopsy resulted in a diagnosis: MDS. None of us had ever heard of it. 

According to the MDS Foundation

Myelodysplastic Syndromes (MDS) are a group of diverse bone marrow disorders in which the bone marrow does not produce enough healthy blood cells. MDS is often referred to as a “bone marrow failure disorder.” … To help you better understand MDS, it might be helpful to first consider some basics about bone marrow and blood. The bone marrow functions as a factory that manufactures three kinds of blood cells: red blood cells, white blood cells, and platelets. Healthy bone marrow produces immature blood cells — called stem cells, progenitor cells, or blasts — that normally develop into mature, fully functional red blood cells, white blood cells, and platelets. In MDS, these stem cells may not mature and may accumulate in the bone marrow or they may have a shortened life span, resulting in fewer than normal mature blood cells in the circulation.

MDS didn’t account for all his nasty symptoms. Doctors identified Epstein-Barr Virus as the culprit. His cough left him breathless and nearly incapacitated at times. During our family gathering over the Christmas holidays in 2017, he passed out, landing facedown on the floor. So scary. 

In October 2018, I took a week off work to spend time with my dad, whose condition was worsening. I sat with him during his daily chemo infusions at the clinic, a weirdly bonding experience. Normally overshadowed by my extrovert mother, chatty children, and gregarious grandkids, my dad opened up during those clinic visits. The first day, he brought a book to read, and I laughed, “Oh no, you don’t get to read! We’re going to talk!”

We fell into a routine. We’d scope out two adjoining recliners, and while the nurse checked his blood pressure, I would grab some apple juice and peanut butter crackers for him from the snack counter. We talked about his childhood and high school exploits in Bellevue, Washington. He shared stories about his parents. We discussed books we’d been reading, both of us fans of historical fiction and thrillers. We even managed to discuss politics and realized we’re both essentially moderates, just on opposite sides of the aisle. We laughed and laughed about crazy family stories, and we reflected on how fortunate we were to see so much of the world. Maybe we gossiped a bit, as well. 

I returned to Chile feeling a deeper connection to my father and wishing I had taken a chemo selfie with him. “There will be other chances, I’m sure,” he texted me.

It took more than a year to kick the virus out of his body. Virus-free, he felt much better. Not great, but at least he got back on the golf course, albeit with a “disabled” sticker on his golf cart, and he joined his golf buddies for lunch each Friday. 

A text message from him on Jan. 11 says: “Certainly kinda tired right now…and sore. Can’t hit the ball nearly as far as before and my putting kinda sucks.  Loved playing with the guys … they’re so funny!”

Unfortunately, just a few months later, Florida’s steamy summer weather and my dad’s declining condition combined to relegate him to the sofa, where he watched TV, read, and surfed the internet.

In September, doctors admitted his chemo wasn’t doing the trick. They decided to switch gears and put him on Venclexta, which, in his words, “is kicking my ass.” 

For about 30 percent of people with MDS, the syndrome progresses to acute myeloid leukemia (AML). Eventually, that’s what happened. By mid October, he had developed excruciating pain in his left thigh. He thought he had pulled a muscle, but doctors found a blood clot, as well as a lung tumor, indicators that he was entering the end stages of his disease. 

Tony and I had planned to spend Christmas in Florida, but after hearing this news, I decided to take time off work during the week of Thanksgiving. When I told Megan on Nov. 5, she said, “You might want to come sooner.” Within 48 hours, I was on a plane to the States.

I arrived at my parents’ house around noon on Friday, Nov. 8. My sisters were already there. My dad was propped up on a hospital bed, watching TV. I ran to him. “Daddy, I’m here,” I said. His whole face lit up, and he smiled, an unnerving sight as his mouth was full of painful ulcers. Blood coated his teeth. He couldn’t say much, but he reacted to us with single words, phrases, or – in typical fashion that triggered inappropriate giggling – obnoxious facial expressions. Kate took his guitar down off the wall rack and summoned her muscle memory to play “You’ve Got a Friend in Me.” 

My father learned how to play guitar when Mike and I were young, and we all remember many special evenings singing along to his old standards. That’s why it felt particularly poignant when he gestured for his guitar and took a stab at playing “Froggy Went a’Courtin’.” We used to crack up at his alternate ending, which led to Froggie’s gruesome demise as he dejectedly left Molly Mouse’s house and walked in front of a truck. Seeing him strum and sing with us one last time was the greatest gift.

My brother, Mike, arrived around 10 p.m. Dad had quieted down by then, but he still looked thrilled to see that all four kids had arrived. Overall, it was a weirdly uplifting day. 

Hospice wouldn’t send an overnight nurse until dad’s symptoms worsened, so we hired a private nurse, Marlene, to stay with him and give the family some respite. Mike and I checked in to a hotel, and my sisters stayed at the house. 

Saturday, Nov. 9, dad was much less communicative, sleeping most of the day. As a special service provided by Cornerstone Hospice, U.S. Army Col. Dave Johnson came over to honor my father for his 23 years of military service. Col. Johnson deftly posed questions and shared stories to keep him engaged, and he seemed to awaken memories that made my dad smile with pride. Dad was bright-eyed and alert during this short ceremony. Col. Johnson gave dad a veteran’s pin and certificate. For my mom, he presented a lap quilt made by hospice volunteers. At the end, Col Johnson and my dad saluted each other.

We spent much of the day just hanging out next to dad, talking, singing and stroking his arms and legs. A supervisor from hospice, Cindy, gave us a briefing about his condition. She said he probably wouldn’t last much longer. She felt like he was in the end stages of transition. He was starting to struggle to swallow, and his lungs were filling with fluid. However, by evening, he had calmed down a lot and seemed peaceful. We played some songs on Apple TV that we remember dad playing on his guitar. At times he would smile and relax into his pillow. Cindy said it was time to start 24-hour nursing. 

Our first nurse came in the afternoon. She was nice enough, but she mostly sat on the sofa and didn’t really do anything (well, we didn’t let her do anything). At 8 p.m., our night nurse arrived. Her name was Belinda, and she was fantastic. She immediately stepped in and started checking dad, cleaning him up and caring for him very closely. 

My favorite quote from Belinda was, “Your family is very stimulating.” 

We laughed because it was so true. I kept whispering into dad’s ear: “Daddy, You made me who I am today. You made me strong. You made me resilient. You taught me values that have guided my life. Don’t worry, dad, we’re all going to be OK.”

Megan employed her hospital training to roll dad over and give him massages, clean his mouth, put drops in his eyes, get him a drink of water, and whatever else was needed to keep him comfortable.

Kate would pick up the guitar and serenade him repeatedly. Mike was our DJ, finding playlists of classics that dad loved. He also clasped his Apple watch on dad’s wrist and kept up a running commentary on his vital signs. Mom flitted about, providing updates to the endless visitors. She would pop into the living room to say, “Paul! Bill’s here. He wanted to say how much he misses you on the golf course!”

Belinda said we would have to reign it in if we want to give dad an opportunity to pass. She said it was like poking someone who was trying to sleep. Fair enough. but when I was leaving for the night, I said to dad, “I love you,” and he said, “I love you too.” So, he wasn’t quite ready to go.

Belinda had warned us that some dying people experience transitional aggression. They get angry and frustrated and lash out at the people they love. “I hope he doesn’t go through that,” she said. Unfortunately, he did.

When Mike and I arrived at the house Sunday morning, Nov. 10, he was sitting fully upright in his hospital bed, gesticulating wildly and moaning with eyes full of terror. It was a horrible sight. Belinda said he spent the night alternating between holding her hand and trying to hit her. He spent a lot of time trying to get out of bed. She had to sit him up straight because he was coughing so much, but he would flail all around and almost fall over. 

Belinda was like a balm for our aching hearts, but her shift ended at 8 a.m., and Lisa arrived. She was kind and helpful. She seemed to know that her shift would be the last. Lisa started giving dad heavy doses of morphine to help him relax. Eventually he did. All of us kids sat by him and said some goodbyes and shared some memories. We all kept encouraging him to let go. At one point his breathing was very shallow, but then he took a deep, loud breath. “He’s fighting it,” Lisa said.

Mom was pretty manic. Her coping mechanism? She insisted on making bacon. “Don’t you want bacon?” she shrieked at me. “I’m a vegetarian,” I reminded her.

Around 10:15 a.m., I sat by myself with dad, held his hand and whispered to him. Eventually, the rest of the kids came in and joined me. We just sat quietly with him and his breathing got shallower and shallower. Finally, Lisa said, “I think he’s about to pass. You should get your mom.” She was in the kitchen talking to a visitor. But she came in and touched dad’s face and said her good-byes.

After a few minutes, he released a long final exhale. It took about three minutes for his heart to stop. I would have thought I’d freak out about sitting next to a dead person, but I just wanted to kiss him and stroke his head. We loved on him for awhile, and then the nurse called the funeral home. Two men arrived and very respectfully wrapped dad in a white sheet and then draped a flag over the stretcher. I felt a pang of sad realization when they pulled the flag over his face to put him in the hearse. We all did our traditional “binoculars and wave,” like we always do when a loved one pulls away at the end of a visit. 

The rest of the day is a bit of a blur. People visited. People brought food. Mom started calling people. I called a few people for her. Everyone was so kind. Dad was so loved.

The next day, Monday, was surreal. Hospice workers came by to collect the medical equipment and the hospital bed. Cami, a friend from high school who is like another sister, called from Virginia to order lunch for us from Olive Garden. More visitors. Mom and I went to the funeral home to finalize the cremation arrangements. She was very distraught and doesn’t remember that visit at all. On the way home, she suddenly decided that we should all go out to dinner at dad’s favorite Mexican place.

Mike decided to drive the golf cart by himself, while the rest of us took the car to meet him there. Mom got weepy and wasn’t sure she could handle it. We almost turned back. When we arrived at the restaurant, Mike had somehow gotten there first with his pokey golf cart. He had settled in at a table with chips and salsa and a margarita. “What took you so long?” he asked. By the end of the night, we were laughing so hard, tears were pouring down our faces. We all needed that.

We headed over to Aunt Bev’s house. A family friend, Bev has become more like an aunt to all of us. She knew dad even before he met my mom. She was married to one of my dad’s Army buddies, and they were all stationed in Germany together. Don’t you know she has some good stories in her vault? We had a glass of wine and played with her dogs. 

Now, I’m back in Chile. Many times in the last few weeks, I’ve had the urge to call my dad. I want to chat about books, the protests in Santiago, our house in Michigan that’s been on the market since March, our plans for the future, the migratory birds in his backyard, comings and goings of friends and neighbors in The Villages, his medical treatments. Of course, I immediately remember that he won’t be on the other end of the line, and my heart sinks. How can this be real? How can he be gone?

Despite the numbness, the confusion, the sensation that I’m moving in slow motion while the rest of the world has sped up, despite the grief … I can muster deep gratitude in this holiday season. 


Dad …

  • for taking on a single mother with two young children, adding two more kids, and molding us into a tight-knit loving family;
  • for the bike rides, the walks on the beach, the trips to Home Depot, the cups of coffee, the sing-alongs, and the advice;
  • for giving me the opportunity to see the world and learn resilience as an Army Brat; 
  • for modeling integrity, loyalty, hard work, and patience; 
  • for all the laughter and love;
  • for who you were and all that you brought to the world, I will always be thankful.

I’ll always remember you like this. Strong. Healthy. Sipping coffee on an early morning stroll along the beach in Ocean City, NJ.

5 thoughts on ““Your family is very stimulating.” – holding tight and letting go”

  1. Sharon, thank you for sharing this with everyone. All of you are very blessed in the memories he gave you, keep those as they will sustain you and help during these days ahead.
    I am keeping all of you in my prayers.

  2. Sharon, this is beautiful. When I knew you in Champagne, IL so many years ago who knew what a wonderful woman you would turn out to be. You have explained the last days in a beautiful way. I know your Dad was so proud of you and all 4 of you kids. I do hope to visit your Mom in February when I head to Fl.

  3. Sharon, this is so beautifully written and captures everything so memorably. I, of course, cried reading it. So unreal that he is gone. But I know he is watching over all of you and knows how much he was respected and loved. There are None like him. “One of a kind” and his legacy will live on through his wonderful family and friends and coworkers. I know I will never stop missing him. Love you so much.

  4. That was beautiful. Thank you for sharing. It reminded me of my own loved one who passed not too long ago, and there’s something very comforting in knowing that others share this very human experience. I’m sorry for your loss. I hope you and your family are healing.

  5. Your beautiful writing captured an extraordinary father and man. There are too few like him. Thank you for sharing your last months with him.

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