May 2024
By Richard Fleming
Photo courtesy of Gilberto Parada
My wife and I were awakened by a phone call at 6:03 am on Sunday, April 28. It was Cora, the manager of the care home where my younger brother lived. “I’m sorry to call so early, but Chris is not doing well,” she said. His oxygen level was dropping despite supplemental oxygen. He was not responding to people’s voices. His breathing had become a bit labored and he had been given a small dose of morphine a couple of hours earlier. We had enrolled Chris in hospice in early April because of recurrent aspiration pneumonia, dementia, and Down syndrome. While we knew his time was limited, we were not expecting this particular call at this particular time.
We should not have been surprised, since an omen appeared several hours before the phone rang. My wife’s bedside light turned on spontaneously in the middle of the night. That happened once before, 16 months ago, when another family member experienced a significant health problem. We should have known the light was turning on for Chris.
After the call, my wife and I got out of bed, braced ourselves for whatever may lie ahead, brewed coffee in to-go cups, and drove to the care home. Along the road, I called my sister, who lives in the area, to come as soon as she could.
When we arrived at Chris’ bedside, the sun was an hour above the horizon, the sky was cloudless, and the air was cool. Cora, her face grim, quickly ushered us in to Chris’ room. A hospice nurse sat at his bedside. She gave us a report on his status. He had another lung infection and it was clear his time on earth was drawing to a close. I texted our older brother in Colorado, who quickly responded he would fly out that afternoon.
Chris appeared serene. His eyes were closed and he was breathing slowly. We tried rousing him, but he made no movement. We spoke to him, telling him we were there, letting him know we loved him and that things would be OK. While he did not respond, we hoped our words would breach the barriers to the outside world which were quickly rising in his brain and provide him some sense of solace and security.
His breaths became raspy again and the hospice nurse gave another dose of morphine. His coarse breathing improved and his respirations slowed further, down to six breaths a minute for a while, then to four.
The nurse excused herself, since she had other patients to see that morning. The people left in the room with Chris were our sister, my wife, and myself. We sat surrounding him, hands resting on his shoulders and feet, periodically letting him know we were there. His breathing slowed to three breaths a minute. Then two. Then Chris took one last breath. It was deep and calm. Full but final. We waited. But he had no more breaths to take. After 61 years of a vibrant, challenging, and joyful life, Chris died.
We told him we loved him and to take care, and we asked him to say hello to mom and dad. Did Chris hear our words? Impossible to know, but they issued from our hearts more than from our minds, and had to be spoken aloud.
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A commonly-held notion is that a person does not truly become an adult until both parents die. This concept makes sense. It is only after the protective parent figures in our lives are gone that we are fully on our own.
There is a corollary idea I’m beginning to embrace: a person does not fully enter old age until they lose a sibling. It is then that we truly appreciate what old means and what old feels like. (This corollary applies to people who are at least in their 60’s, since young people can tragically lose a sibling.) I’m in my early 70s, and I know that many people in my age range have lost a sibling. But it is the first time for me. And the impact has been profound.
Losing anyone – a parent, a spouse, a close friend – is incredibly painful. Losing a child is a pain beyond any possible measure.
Losing a sibling is different. It is painful, but in a unique way. The loss of a sibling makes a forceful statement about the brevity of life. When you lose a brother or sister, it transforms you. You had the same parents. You shared countless childhood experiences known only within your family. As you grew up together, you jointly wove a tapestry of life so rich and complex it is impossible to explain fully to anyone else, including your spouse and close friends. When you lose a sibling, you lose someone who played one or more important roles in your life – colleague, comrade-in-arms, crew member, peer, competitor, confidante, friend.
Chris’ death has precipitated much reflection. He was a brother, but having Down syndrome, he was much more than a sibling. It is hard to explain, but he was always present, always there, every day of my life, even though he mostly lived with other people. In the days after Chris died, my two remaining siblings and I, along with my wife, spent hours around the lunch and dinner tables, talking, ruminating, and deconstructing our family’s ups and downs over the six decades of Chris’ life, and even the years before he was born. Many things became clearer, though there is still much to sort out. Chris’ influence on our family was profound. His life largely governed where we lived. His life impacted what we thought and felt about our family and each other. It significantly influenced the way our parents treated us. Though small of stature, his presence in our lives was massive.
Chris’ death has closed the door on some important parts of my family’s evolution. It has impelled me to reconsider parts of my past and my future. I will continue living, hopefully for many more years, but it will be without my younger brother.
I feel more like a senior now than I did before Chris died.
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All of Chris’ belongings are now sitting in our garage, in random sacks and boxes. Someday we will need to sort through them, but not today and not next week. One thing I retrieved was his eyeglasses, which I placed on top of the piano in our entryway. I see his glasses every time I walk by. Sometimes I touch them. They provide a small measure of comfort and remind me of times past, before the door closed, when Chris graced our home and our lives, smiling, and arguing, and joking, and crying, and walking, and breathing, and frequently saying, “I love you” for no apparent reason. Seeing his glasses makes me feel happy and sad. And they make me feel older, but not in a depressing way. It is hard to explain, but they help me feel more at peace with my place on the path as I navigate hesitantly into the future.
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Richard, I am so very sorry for your family’s loss! I sit here with tears welling up in my eyes. I never knew Chris, but your post describes the love your family had for him and the love you have for each other.
It also brings forth the feelings I have for my own family, and the constant sense of my own aging. I have not lost a sibling, but my only sister is five years my senior and I am slowly watching as we both slowly age together, yet separately. Her rate is accelerating faster than mine at the moment, but I fully realize that could change.
Again, my sincere condolences for your loss, and my thought are with you and your family completely at this time.
Thank you for sharing your touching story about Chris. I have always been amazed by the love and innocence that people with Down syndrome possess. God bless you and your remaining siblings as you continue on without your beloved brother.
Yes I love this. We are walking the same path right now with my husbands sister. Her husband died in the recliner next to her as he was her caregiver ( she’s very ill) she was supposed to go first, but life has a way of throwing those curve balls. So she’s the one left alone 2000 miles away alone. It’s heartbreaking and very hard on my husband. He and his brother have flown twice in the past month to a small town in Michigan. Once to bury her husband and then to enter her into hospice. We are all here to walk each home so to speak. It is our place to be. As someday someone will help walk us home to our true nature. It is a profound and honored place to be. Thank You you have no idea how grateful I am for your writing.
Richard,
I am sorry for your loss and can share many of what you have beautifully expressed. Both of my parents left, 13 years apart. Mom died while I was visiting her in her board and care of dementia on November 6th 2016 about one hour before Trump was declared our next president and to this moment I believe she checked out because she could not tolerate this change.
And, as you pointed out, when a sibling leaves it is a different sense of certainty that we all have our days in the not too distant furture, which occured about 2 years ago when my sister passed. She was 3 years my senior and like a second mom in my early years as she took me everywhere and taught me from crossing a busy street to how to address different people of different ages.
May the sweet memories bury brightly.
Craig Hoffman
I’m sorry you lost your brother. Thank you for having the courage to share your grief with us. Down’s syndrome people are the most wonderful creatures, they are happy and full of love. What joy they bring to those lucky enough to experience life together with them. God bless you through your time of great loss of your wonderful brother.
I am so very sorry for your loss. May you and your family find peace in the joyful memories of Chris’ s life. I was at my mother’s side when she passed peacefully, too, and there was comfort even in that. My husband just remined me yesterday that his last words to my mon were: “See you later, alligator” — I so hope that when I take my last breath, somone will know that memory so they can repeat it for me. I’m sure that you have many memories that have a place in your heart like that. Take care.
I was so touched to read the story of your brother’s passing. And so glad that you had shared your story of your life together just recently. I felt I knew him and cried as I read about his final moments with his loving family. I have had my own shift in feeling “senior” with the other grandmother in our family, just 12 days younger, surviving septic shock 2 weeks ago. Life is fragile.
Thank you for sharing your touching story. As always, it is full of wisdom and love. I am sorry for your loss.
Lou and I are so sorry for your loss. Your words about losing a sibling were so very true. Thank you for putting into words for me. You were a wonderful brother to Chris, I know, and I hope your memories of him sustain you for a very long time. I still sometimes forget that my brother died and I think of calling him. Our siblings will always be a part of us.
Thank you again for your wonderful blog.
Richard, sorry for your loss. You are right the loss of a sibling is not like other deaths. A loss of a sibling is a loss of our childhood. I have loss my parents, all of my siblings and my spouse. Each loss have their own unique set of feelings. Take care and may the Creator of us all be with you.
Deeply sorry for the loss of your brother, Richard. Your words and reflections hit home as we all age and experience this senior portion of our lives. Doug
Thank you for sharing this story. Yes, when we lose someone close, we are changed. I notice “Fur Elise” by Beethoven on the piano–a composition with so much of the same emotion as your writing–some sadness and reflection and beauty.
Profound and heartfelt condolences, Richard….
Deepest condolences. Thank you for sharing. You write beautifully what many of us cannot put into words as we lose family and friends as we age.
Hi Richard,
My condolences on your loss. I think you hit the nail on the head regarding the significance of the loss of a sibling. My brother’s time is also likely to end before mine, and we both realize that we’re the only two who have the most similar life experience, despite the passage of time and distance separation.
May your brother’s memory be a blessing to you.
Richard,
Kathy and I both send our love and condolences for the devastating loss of your brother – no doubt you were one of his biggest heroes! I hope that you find peace in the midst of this awful time.
Oh Richard…. tears in my eyes! You describe so eloquently his final moments and your thoughts and feelings. I am very fortunate to have all four of my younger siblings still with us… hugs of comfort to you.