On September 30th, 2015, I sat alone next to my elderly mother’s hospital bed during a long night, sadly realizing that she seemed to have lost her will to live and might be deciding to die. Even though the treatment for her congestive heart failure was working well, she had suddenly started sleeping most of the time – and had almost stopped eating.
“I want you to live!” I told my 87-year-old mother, whose name is Lily Regelson.
“Why?” Lily asked. “I am ready to die.”
“Well, I am NOT ready for you to die!” I announced, thinking, not like THIS, in despair at how their life had fallen apart.
Over the previous few months, Lily and my 92-year-old father, Raim, had plummeted though holes in how our social system works for very elderly people, with the result that her medical care had not been handled properly and both of them had become very stressed and isolated. Their fierce independence had made it impossible for their worried family and friends to do anything to help. Eventually, their overwhelm had led to a medical crisis for Lily and had caused their house to become a disaster.
It is one thing to die because your body cannot sustain any kind of quality of life. It is another thing to die of hopelessness.
NOT like THIS, I thought again.
So, I took my mother’s hand, reaching in between the tubes going into the IV in her arm and the sensors attached to her body, and asked, “Would you please do me a favor?”
Lily looked at me somewhat wryly and wondered aloud, “What kind of favor can I do for you?”
“You and Raim will have your 70th anniversary next June. Would you please try to get well and enjoy life at least until then?”
Lily squeezed my hand and whispered, “Okay. I’ll try!” And went back to sleep.
A few hours later, she ate her breakfast and then sat up, head bent, staring into space.
“What are you thinking?” I asked.
“I am wondering how this can work,” Lily said wistfully.
“If you will do your best to get better, I will do everything in my power to get you home, ” I promised, “with enough care and safeguards in place that you and Raim can be safe and happy.”
“But HOW?” asked my analytical mother, looking at me pessimistically.
To tell the truth, I was not at all sure HOW, with so many obstacles in the way.
With determination, powered by enormous love, I said firmly, “Lily, YOU are the one who taught me to plan, to figure things out and to think things through in order to get things DONE.”
“And Raim, ” I went on, “is the one who taught me how to climb mountains, taking one step at a time, crossing ravines or rivers in the way, going around places that are too steep, pushing past tiredness. Sometimes it is not possible to get to the top, but most of the time we can, if we just keep putting one foot in front of the other and decide not to give up.”
My mother suddenly laughed. “You’re a good kid,” she said.
Very quickly, our family united into a strong team, working harder together than we’ve ever done to get Lily home. My brother Ken left his vacation in Italy to fly to California, not just climbing mountains but moving them to fix the huge problems in our parents’ house. His wife Judy spent hundreds of hours visiting with Lily, gently helping her to reconnect with the world and ensuring that she got the best care possible, as well as helping with the countless logistics needed for her care.
Our parents’ oldest, dearest, and most trusted friend Dolores showed up to help Raim face all the changes in his house that needed to happen so quickly and to help Lily understand what we needed to do to get her home.. My dear husband Ed held the fort at home so I could be where I needed to be. My sister Elaine came with her son David to provide respite and support. All the rest of our family provided encouragement and as much help as they could.
Many people in our wonderful Kidpower community took leadership so that our organization stayed well and strong even though I could not be available – many also providing enormous personal support – especially Ellen and her family, who welcomed our family into their beautiful home in Berkeley, so that we had a sanctuary, near our parents, in which to stay.
Along the way, countless others, whether we met them or not – a cast of thousands – also become part of our team. All the people who make hospitals and nursing homes places of healing and hope; all the contractors who did their work so quickly and so well; and all of the people who provided knowledge and caregiving resources for our parents.
Lily’s journey went from the hospital, to a skilled nursing home for rehabilitation and recovery, back to another hospital after she had a stroke, back to the nursing home where her friends came in to celebrate her 88th birthday, and finally, a triumphant return to her home.
At Kidpower, we teach that Heart Power can be used to take kindness into your heart, protect your heart from harmful messages, and use your heart to connect with and be compassionate towards others.
Lily’s Homecoming Day was filled with Heart Power. Her physical heart will probably never get back to what it was – but her emotional heart had been healed by the determined effort of so many people letting her know how very important she is to each of us.
Lily was wearing what she called her “escape shoes”, the green and yellow athletic shoes she had used in physical and occupational therapy to do the work necessary so she could be ready to “escape” from the nursing home. She was wearing a huge smile.
As Lily stepped into her home, she looked out the windows at the beautiful view of the trees and hills that she had fallen in love with when they bought the house 30 years ago and said quietly, “Well, I made it. Thank you!”
And then she kissed her husband of 69 years and held his hand.
On that beautiful day, we didn’t know what the future would bring. But we did know that, as Lily sat in the home she had feared she had lost, despite all that still needed to be done and the many bumps that lay on the path ahead, the view was great and life was pretty much perfect.
Update on October 24, 2016. The above post was written almost a year ago. The past year has indeed had some interesting challenges that, with lots of support, our family team has weathered well. Every skill that we have learned and taught in Kidpower has proven to be tremendously useful. Thankfully, as we all had hoped, my mother Lily and father Raim celebrated their 70th anniversary in June 2016 with all of our family and are still living at home with enough care and support to stay safe, happy, and together. Lily will be celebrating her 89th birthday next Wednesday on October 26.
Update on October 31, 2017. Last Saturday, we celebrated Lily’s 90th birthday with our father Raim, who is 94, their three children and our families, their long time neighbors, and their team of caregivers. Lily is happy and feeling well, living at home with her husband and still enjoying the beautiful view, as was her heart’s desire.
Update on January 23, 2018. Alas, Raim’s worn-out heart finally could no longer keep beating, and he died on January 15, which is Martin Luther King’s real birthday. This Ahead of His Time tribute shares stories from his life and last days. Although this is a sad time for our family, Lily will continue to live in their home with the beautiful view, surrounded by the HeartPower of her family, friends, and the 24-7caregivers who have come to love both my parents.
Published: October 30, 2015 | Last Updated: October 31, 2017