Every Day was a Great Day: The Magical Garden of Dying Well
“There are two sacred breaths in this life. The first breath that welcomes life into the body. And what they call the everlasting life, the last breath. What a gift it was to be with my father for his last breath.”
Kristen Betts, daughter of Paul Epperly, shines through tears of wonder and gratitude as she credits hospice and palliative care (“two things you don’t know about until you need to know about them”) for not only once, but twice, helping her family to co-create a rather unprecedented last chapter for her father. While her close observation of the alchemical operatives of hospice do bear out, it was also, irrefutably, Kristen’s own devotion and particular expertise, which ushered forth a truly remarkable experience for her dad. And for her.
Paul Epperly, who had been in excellent health well into his late 70s, loved what he did and loved his family. Prior to a surgery for a recurrent skin cancer, it was discovered that her father, who she describes as resilient and strong in faith, needed a heart bypass first. Kristen, a professor who teaches courses on neuroeducation, noted afterward that the heart surgery, while successful, impacted Paul’s emotional regulation. Kristen explained to her dad that anxiety and depression are commonly experienced emotions after heart surgery so they sought treatment.
He bounced back.
Paul then found out that the skin cancer he had been diagnosed with was atypical and aggressive. Kristen helped her dad find a national clinical trial that was part of Shands Hospital in Florida. Paul stayed at Hope Lodge and went through 84 rounds of radiation. He was told that swallowing could be problematic following radiation and so as part of the clinical trial he had exercises he would do to practice swallowing. Kristen explained to her dad he needed to really focus on doing the exercises correctly since swallowing is something that we do not think about doing. So, Paul engaged the mechanics of swallowing and was all throughout “a beacon of light.” Kristen also talked to Paul about the power of positive thinking and mindfulness, which he practiced every day.
Once Paul was feeling better, Kristen invited him and her mom up to New York for a surprise 51st wedding anniversary, They had a suite in Times Square and tickets to the Lion King with the grandchildren. After watching the show, Paul and the entire family were headed to Amorino for his favorite gelato when he had a massive stroke. He lost all speech, the ability to swallow, and movement in his left side. He was rushed to Mt Sinai where he spent one month. The plan was to get him strong enough to return home to Florida.
His recovery was miraculous. In one short week he regained his ability to swallow and slowing regained speech. Kristen shared with the doctors how the clinical trial had Paul preparing for his radiation by doing swallowing exercises daily. Movement to his hand and left side was much slower in terms of recovery. Kristen talked with Paul about neuroplasticity, which she teaches in her classes, and how the brain continues to change and re-wire itself. She explained how important the rehabilitation was to his recovery since change was happening on a cellular level first and his brain was making new connections. With the incredible medical support, practice, and imagery, Paul regained the ability to fully swallow, talk, and walk. After a month, he returned to Florida and eventually got back to walking, driving, and playing golf.
About a year later, 2018, four hours away at a wedding, Kristen’s daughter called her to say, “Grandpa fell.” Her teenage daughters brought him to the emergency room where he got some stitches, and was back home when Kristen and her husband arrived. When Paul stood up to give Kristen a hug and welcome her back home, he showed signs of another stroke. They went back to Danbury Hospital, where he had made many friends earlier that day with his big smile and hugs. He “lit up every room he entered” so the staff of course greeted him with big smiles and “Paul what are you doing back?”
He was indeed having another major stroke, even though all of his scans were fine when he had gone home earlier in the day. This was Paul’s eight stroke and the most challenging. His recovery this time was much slower. He said to Kristen that he didn’t want to go through another stretch of rehab. When Kristen asked him what was happening, he replied, “I’m not getting better.”
“But you are,” she replied. “It’s just going to take some time. Remember, it’s on the cellular level first. You just can’t see all of the amazing changes that are taking place in your brain yet.”
“I’m tired. It’s time,” Paul said.
This was hard to hear. But in keeping with her approach to life and their relationship, Kristen answered, “Okay, then we need to learn what our options are.”
So, they called hospice who came straight away. They explained the difference between hospice and palliative care. “All we knew at that time was that hospice was where you went when you were ready to die.”
They told Paul and his family everything they needed to know about hospice and encouraged them to discuss his wishes as a family. They said, “It is time to start planning how you see things going forward such as services and anything else at the end of life that maybe you’ve never talked about.”
What transpired in that meeting launched a remarkable three-year final tour of a beautiful life.
Thankfully, Paul’s speech and cognition were strong, and he was able to determine for himself what would come next.
Sadly, but respecting her dad’s wishes, Kristen said to Paul, “Why don’t we start talking about your Celebration of Life parties?”
“Parties? I thought we were planning my funeral,” Paul said.
“Oh no!” answered Kristen. “You have had a great life. We’re celebrating.”
And so they began dreaming up the plan for parties in Iowa, Florida, Virginia, and Connecticut.
“So wait,” Paul said, “ … all these wonderful events to celebrate my life and the only one not there is me? How about we call hospice so I can go to all these Celebration of Life events, and then when we come back, I can tell them that I’m ready.”
And that is what they did. There were calls to be made, care to be promised, and waivers to be signed, but in no short order, they were on their first flight to a gathering with the Atlantic High School graduating class of 1955.
Paul announced at the Celebration of Life luncheon with all of his high school classmates, “This is the celebration of my life. I am here to tell each of you how much I love you and appreciate you. I do not know how much time I will have when I get home. So, I want to tell you now.”
Following the luncheon Paul spent several days attending a golfing event, enjoying rhubarb pie, driving by his childhood home, visiting his parents’ graves, and spending time with his best friend Nancy who he met when he was two years old.
The second Celebration of Life event was in Florida. There was a family style dinner at his favorite Italian restaurant with his family and 75 of his close friends. Paul danced with his wife to live musicians, made toasts, and received a special blessing from his friend, a pastor.
The third Celebration of Life event was in Virginia Beach. Paul went to his favorite restaurant, the Beach Pub, with people he worked with during his second career leading up to his retirement and neighbors from where he had lived.
The fourth Celebration of Life event was in Connecticut. All of Paul’s family flew in. He invited his pastor to attend for his own re-baptism along with his new great-grand daughter’s christening. This celebration lasted several days.
About two weeks after all of the events, Paul moved into Maplewood Senior Living in Newtown for 24 hour care.
They called hospice, who again asked, “Paul what would you like to do?”
Paul’s reply, “After all of these Celebration of Life events, I have realized that I’ve got more living to do.”
A few days after Paul had moved into Maplewood, he shared with Kristen that God came to visit him during the night. Paul said that God wanted him to be exactly where he was and his new job was to bring joy to those around him and to create special moments for people. Paul took this calling seriously and soon enchanted the entire community at Maplewood. He asked Kristen to get buttons made with an angel on them that read, “I am a Listener.” He would sit in the lobby at Maplewood and would spend hours listening to others share with him how their day was or their favorite memories. Soon most everyone took him up on it.
In the fall, Paul would bring in hot cider and doughnuts for all of the residents from local apple orchards. For Valentine’s Day, he brought in long stemmed roses for all of the women and white carnations for the men – all with individual notes for his 100+ friends. For Mother’s Day, Fourth of July, and Halloween he would bring in balloons and cheer with messages of celebration and belonging. And, he would always find time to tell everyone about the importance of understanding the power of neuroplasticity and the positive thinking. In fact, Paul inspired Kristen to develop workshops for him and his friends at Maplewood on “The Science & Art of Changing the Brain,” “The Power of Positivity,” and other topics to increase awareness about importance of neuroplasticity, debunking neuromyths, social engagement, and emotional contagion. Paul even received award for his kindness from Maplewood.
Following COVID and the lock down, Paul was in and out of the hospital for pneumonia in the spring. One night Kristen got a call that Paul had a high fever and needed to go back to the hospital. When she spoke to him on the phone, he said he did not want to go back to the hospital. Kristen went and spent the night with him, holding his hand and telling him she would not leave his side.
In the morning, Paul’s fever was still high. “What do you want to do?” Kristen asked.
“I think we need to call hospice,” Paul said. He remembered hospice from the first call several years before.
“I know you’re not ready,” Paul told Kristen. “But I want you to know, you’ve done everything. I have had three years I never planned for. I need you to call hospice since I am ready. And I want to start calling my friends.”
By 9 am, Kristen had called her brother, her mother, and hospice. Hospice knocked on the door by 11 am. They walked Paul through everything and talked with the family. He was ready to plan for the end of his life.
Some of his plans included visits with his pastor, lavender oil massage, being clean shaven and dressed in his favorite clothes each day. Hospice took care of everything. “You don’t have to ever leave Paul’s side,” they said. The whole family encircled Paul and spent every day with him.
For two days, Paul called all of his family members and friends. “I am calling to say, hospice has come, and that I love you and I will forever be with you.” All of Paul’s friends at Maplewood came to visit him. Each day Maplewood associates and caregivers would come by to see him. As the days went on and Paul grew weak, he would reach out to his visitors and squeeze their hand gently, letting them know that he knew they were there and how much he loved them all.
During this time through the support of hospice, the family was able to talk with Paul about all of special memories they had made together over a lifetime: road trips, fishing, golfing, shows in NYC, movie nights, and even creating his “magical garden” at Maplewood that he could see outside his window with flower boxes, a vegetable garden, and fairy lights going up the wall that lit up at night. Kristen and her husband Keith reflected with Paul on all of the medical appointments that always ended with a trip to Starbucks with lattes, croissants, and Pavarotti blasting out the open car windows. The power of positivity truly emanated from Paul bringing joy to all those around him.
“We couldn’t have done this, had all of this, without hospice” Kristen shared. “I don’t know how you can do something so challenging without this support.”
But they didn’t have to.
Paul had everything he wanted. He never worried. And, Paul was surround by his family each day just as he had wanted. “You all did everything and more,” he told Kristen. Her dad had a divine path – where the challenges he had become life-changing for him and so many other people.
“What a blessing to have had this special time together with my dad and our family through the support of hospice,” Kristen shared with a smile and tears of love reflecting on a life so well lived and full of joy.