Month: April 2024

April 2024

By Richard Fleming

I want to open with warm thanks for all the well wishes for my brother Chris, who recently entered hospice, and for our family. Your words are very meaningful.

I also want to acknowledge the many insightful comments you have made to my posts since I started this blog in August 2022. I have not been responding in the comments section, but I appreciate your thoughts and feedback and have learned much from your perspectives. I am inspired to see how we support each other on this journey into the ages. And it is helpful to learn the strategies people are using to chart their paths forward. Please continue sharing your ideas and experiences.

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Photo courtesy of Aaron Burden

Reminiscence is a common pastime for older folks. When we look back, it is gratifying when our memories yield more smiles than frowns. But it is common to see decisions we made in our youth that we would approach differently, if do-overs were an option. Some people see many things they would change. Others – the fortunate ones – see only a few. Of course, there is little point in dwelling on such matters. The past has passed. Not much can be accomplished by speculating on how we coulda, shoulda, woulda lived our lives differently.

At the same time, it can be an interesting exercise to reflect on decisions made earlier in life and how they impact us today. Doing so might help us understand ourselves better and inform the choices we are confronting today. After all, we old folks are still making decisions in the here and now that will impact who we become in the future. We may be old, cranky, and stiff, but we are still growing and developing. I expect I will be a different person when and if I reach my 80s. And I think that is true for many seniors.

In the spirit of learning and reflecting, I’ve recently been thinking what I would say in a letter to my 16-year-old self. What would I advise that young guy, standing on the threshold of adulthood? While some elements of my letter may be similar to what others would write to their younger selves, much of it is different. When I was young, my situation and my choices were unique to my situation, growing up in the 1950s and 60s in Topeka. For other seniors, their youthful years unfolded in very different situations with very different choices. Their letters sent back in time would reflect their upbringing and their reality.

So, here is what I’ve come up with.

*    *    *

Dear Richard,

I know you’re getting close to wrapping up your junior year at Topeka High, and you’ve got tests and papers to prepare for. But I hope you can take a few minutes to read this letter from your future. It is impossible for you to know what your life will be like five and a half decades from now. But I want to mention a few things to consider as your childhood wraps up.

Overall, you’re a good person. You’re doing well in school. You have a fair number of friends. You have close connections with some whom you will still be talking with regularly when you’re in your 70s. Be grateful for these friendships. Nurture them. Do not take them for granted.

An area you might want to work on is family connections. While your relationship with mom and dad is good, consider spending more time talking with them about their childhoods and early adult years. You know mom grew up in Baton Rouge and was the first in her family to go to college. But you’ve never talked with her about what it was like growing up in the South, how she decided to go to college, what her two siblings thought of this decision, and why she joined the Army during World War II.

Ditto with dad. His upbringing in New York City during the Great Depression was eventful, but you’ve never asked him much about it. You know he was a paratrooper during WW II and was in active combat zones in the Philippines. He parachuted onto Corregidor and brought back his parachute with a bullet hole in it. But you’ve never sat down with him on a cold Kansas winter night in front of a warm fireplace to ask him how he felt about his wartime experiences.

You should also spend time getting to know your grandparents, uncles, aunts, and cousins. You’ve had little contact with them. Write them letters. Call them on the phone.  As your 72-year-old future self, let me tell you I miss knowing more about our family. It is a sizable hole which can no longer be filled in.

Three last pieces of advice: (1) You should exercise more. You’ll feel better and be healthier 50 years from now. Plus it can be fun. (2) Please eat better. Less fast food. Bobo’s burgers are delicious, but they will linger on your frame for decades to come. You will feel better and look better 50 years from now with a healthier diet. (3) It’s probably too late for this last one, but I wish you had signed up for shop class at Roosevelt Junior High. Your life will be so much easier in the years ahead if you know what torx and hex screwdrivers are and understand how to use socket wrenches, ballpeen hammers, and other basic tools.

These suggestions might seem unnecessary or inappropriate. But please consider that your decisions in the next few years will reverberate and echo long into your future. Trust me on this, they will in large measure determine who you will be at age 72. No pressure, young man. Just choose wisely. I’ll be here waiting for you.

*    *    *

Well, writing this letter was mildly therapeutic. There are so many other things I should have done differently as a youth, but I’m not going to spend a lot of time thinking about them. If I’d lived a perfect life as a teenager, I would likely have become an incredibly boring adult. And, who knows, maybe I would not have ended up living in California and would have had a very different family. I must have made enough good choices as a young fella, since I am happy living in the Bay Area and have a wonderful family.

So, maybe there is little to be gained from writing a letter to my younger self. Perhaps in the spirit of sharing wisdom I should write a letter to my 85-year-old self? Naw, for a couple of reasons that would not be a useful way to spend my time. First of all, the garage still needs to be decluttered. And secondly, if I make it to 85, I’ll likely be even more crotchety and less willing to listen to advice from a young guy who’s only 72 years old. What could he possibly know?

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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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