April 2024
By Richard Fleming
Photo by Richard Fleming
My younger brother Chris has Down syndrome and dementia, and he is rapidly growing old. Down syndrome individuals age more quickly and have shorter lifespans than other people. The past month has been particularly trying. Since turning 61 in March, Chris has been hospitalized twice with pneumonia. His throat muscles are weakening, making it hard for him to protect his airway. Saliva, food, and stomach contents can easily leak into his lungs and cause pneumonia. Because of these recent infections, his overall strength and stamina have declined significantly. He can no longer walk and he requires 24/7 help.
People with Down syndrome are prone to an array of medical problems. One particularly devastating condition is dementia, which tends to progress more rapidly in those with Down syndrome. My brother’s cognition is steadily declining. Three years ago, he handwrote a letter to President Biden with his ideas on how to stop the covid pandemic. He focused on how Biden should get rid of bats carrying the virus. Now, he can no longer write his own name on a piece of paper. Because of faltering muscle strength, he is at high risk for recurring episodes of pneumonia. Each infection will take more out of him. And they will become harder to treat because of antibiotic resistance and lung damage. Aspiration pneumonia is among the leading causes of death in Down syndrome.
It is very sad to witness my brother’s deteriorating health. Chris has had a remarkable life in many ways and has touched many people’s lives. In his 20s, he was a spokesperson for Special Olympics in San Jose. He worked at McDonald’s for 25 years. He developed a number of deep friendships over the years which continue to this day. Chris loves other people with no hesitation and no restrictions. As recently as six months ago, when our sister took him to a medical appointment, he went around to shake hands with each patient in the waiting room – all of whom were strangers – and said, “It’s nice to see you again.” When my wife and I took him to a fast food restaurant late last year, he wandered back to where people were preparing food to say hi to everyone and ask how they were doing.
His impact on our extended family has been profound.
But Chris is far older than his 61 years and his aging process is accelerating. It has become unavoidably clear over the past few months that he is approaching the end of his life. After much discussion within our family, we have just agreed to enroll him in hospice. No one can say how long he may have. Our primary hope is that his quality of life will be reasonably good, and that he will not suffer much physical discomfort or anxiety.
Fortunately, my brother has received excellent care since his health began faltering. His two recent hospitalizations were complex and challenging. More than 50 people helped him through his hospital stays and his out-of-hospital care: EMTs, hospital nurses, doctors in various specialties (emergency medicine, hospital medicine, radiology, psychiatry, pulmonary medicine, infectious diseases, neurosurgery), transport staff, physical therapists, speech therapists, nursing aides, phlebotomists, lab techs, radiology techs, environmental services staff, discharge planners, case managers, pharmacists, hospital unit clerks, the care home managers, the care home staff, the care home’s medical director, hospice nurses, the hospice music therapist, multiple staff members of the NorthBay Regional Center (which provides care for people with disabilities), staff at the durable medical equipment supply company, and others. These individuals treated Chris with compassion, respect, understanding, and expertise. Each had a specific role to play. And the coordination of their work was complicated, requiring scores of phone calls, emails, text messages, voicemails, and conference calls.
It was this intricate web involving so many people that enabled Chris to survive his pneumonias and return to living comfortably in his care home. My wife and I, while driving to see Chris after his second hospitalization, reflected on the vast number of people involved in providing him assistance and care over the past few weeks. It truly was remarkable.
It was also a bit concerning.
The amount of time, energy, and resources required to take care of this one older individual was, and still is, enormous. I am very glad our society is able to provide this level of support. Certainly my family would not have been able to manage his infections on our own. And it would be impossible for us to provide the 24/7 care he needs now. My brother has both Medicare and Medicaid, which fortunately cover the majority of his medical needs.
But my brother’s experience the past few weeks makes me wonder and worried about how other old people in our country will make out in the years ahead.
* * *
Our society is aging. When I was born in 1951, 8% of the population was over age 65. Today this group makes up more than 17% of the population. By 2040, old folks will be 22% of the population. Providing high quality care for the growing number of old people will require an increasing proportion of social resources, both financial and workforce. There are currently voices in the political sphere advocating reductions in spending and benefits on programs like Medicare and Medicaid, even before the silver tsunami washes ashore. Will these voices prevail? And will there be enough young people in the future willing to work in the organizations and systems which support old people?
Growing old is hard enough already. Having to contemplate whether our society will be willing to help us old folks navigate the vagaries of aging just adds to the stress.
I am grateful my brother’s final chapters will be relatively peaceful. He has all the support he needs, and it includes far more people and resources than a village could provide. His care home manager recently sent me a video of my brother lying in bed as the hospice music director strummed a guitar playing the Beatles classic “Good Day Sunshine.” The weather outside was gray and overcast, but Chris was smiling and singing along:
Good day sunshine
Good day sunshine
Good day sunshine
I need to laugh, and when the sun is out
I’ve got something I can laugh about
I feel good, in a special way
I’m in love and it’s a sunny day
* * *
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Wow. Just Wow. Good luck as Chris nears the end of his days. What a saga.
And it is coming for all of us, sooner or later.
Sobering.
What a sweet (and sad, and scary) story. Wishing Chris and all of you all the best.
Wishing Chris all the best. Thank you for sharing.
Thank you, Richard. I cannot even imagine how hard it must have been for you to write this post.
Ageing populations are a grave concern all over the Western world, where we are lucky enough to have the ability and money to manage–even cure–so many of the diseases that once killed us earlier on. It’s a major issue here in England where I live as well. We need a multi-faceted approach to deal with this growing crisis.
Thank you for bringing this to our attention in such a poignant, beautiful way. I wish Chris as easy a passage as possible.
I simply do not know what to say. This touched my heart in so many ways. Thank you Richard
Richard,
A remarkable story of a brother, who made a life for himself and your story of standing by him. My brother, 6 years younger than me, struggles with leukemia and failing kidneys. My daughter is enough of a match to donate her stem cells. I was a closer match but because of my age and pre-existing condition, I couldn’t donate my stem cells. His procedure will start in a few weeks. There are many aspects of getting old, really sucks. Be well.
best,
Jeff
I was so touched by your post. It comes a day after an article that related the history of the institutionalization that was so commonly practiced in our country in the past. From 1966-1969, when your brother was a young boy, I was conducting my Masters and PhD research on stereotyped behavior at the Lincoln State School for the Retarded (Illinois). 4,000 souls with developmental or other disabilities like blindness or cerebral palsy were institutionalized there for their lifetimes. My research team worked on a ward that housed 120 boys from 11 to 19. We were the first outsiders to enter that ward (including any relative) for 10 years. These beautiful souls were warehoused without any toilet training, not given utensils but taught to lap up their food out of metal trays, with only 3 staff members to watch over them, medications dispersed randomly, doctors who had “lost their papers in the war”, forced sterilization and lobotomies performed to control behavior. I recall having to go outside to vomit on the lawn at the most disturbing moments. We cared for them the best we could in our research trailer, giving them their very first crayons and paper to draw while they waited their turn in our studies. This was the nature of the places where most families were encouraged to abandon their “different” babies including thousands with Down syndrome. It heals my younger heart to know of your family’s blessed lifelong dedication to your brother, and I offer my prayers for peace and comfort during this difficult time.
Such a poignant piece, Richard. Our best to your brother as he continues along this journey, and to you and your family. Thank you for sharing, and for your insights.
My heart goes out to Chris, you Richard, your family and all of Chris’ care givers over the years and especially the last few months. God Bless You All!
Best wishes to you and your family dealing with this situation; he has been fortunate to live this long and so well. As your piece continued, my aging brain somehow wandered to the scenario in the movie “Solyent Green”. Science fiction can sometimes be a portent of the future…
Chris is blessed to have Myrna and you in his life, along with his extended care team. Dave
Richard, this is a beautiful tribute to our beloved Chris. Thank you Richard and Myrna for all you do for him. We love you.
A wonderful narrative of an accelerated aging process in a human being who is surrounded by a loving caring family and currently abundant medical resources to provide state of the art care. With the aging population living longer because of our amazing technologies and understanding of the ingredients for good health I hope the medical system will be able to continue to provide the dignified care we all deserve. If the system does not undergo significant transformational change I question if that will be the case.
Beautifully told story, Richard, my heart is with you!
Thank you for sharing. We were touched by your kindness especially your love for Chris. He is a very good person and he makes us happy. Thank you so much for making Chris a part of our family. ❤️
A belated thanks for this moving piece, Richard. Like others, I imagine that it was very tough for you to write. But you did a marvelous job at capturing so much about Chris’s warmth and specialness on the one hand and it taking much more than a village on the other.