A JOURNEY WITH ALZHEIMER’S: ONE OF MILLIONS OF STORIES
By Amy Thompson West
Amy Thompson West’s father led a rich and fascinating life that was ultimately brought to an end by Alzheimer’s. Read Amy’s touching tribute and learn what motivates her in the fight to #ENDALZ.
THE FATHER I LOST TO ALZHEIMER’S
Amy's father, John R. Thompson
My dad, probably like any Alzheimer’s victim, was both ordinary and extraordinary. There wasn’t any particular reason for Alzheimer’s seeking him out. Except for a marked preference for folks over 65 and a slight predilection for women, the disease isn’t discriminatory. It has no bias. It is going to visit one in three of us who reaches the age of 65 and has already made caregivers of over 11 million of us.
John R. Thompson, Jr., known as Jack, was born in 1920 to a middle-class, Brooklyn, NY, family. His crusty, outspoken father operated a commercial bus line in Queens, NY. His chic, beautiful mother was a homemaker with artistic talent and bookkeeping skill. At an early age, my father displayed a keen interest in and understanding of automotive and aeronautical engineering. Music, however, was his passion. He mastered the clarinet and, his favorite, the saxophone. In the late 30s, he formed a swing band which opened for big talents in New York City and the Catskills. His parents, however, believing the music business was a risky business, urged him to choose a more secure career.
The John R. Thompson Band.
In 1941 my dad enrolled at Rensselaer Polytechnic Institute (RPI) in Troy, NY. He completed his freshman year studying toward a BS in Aeronautical Engineering. In 1942, with U.S. involvement in World War II intensifying, he left RPI and enlisted in the military. He spent four years in the US Army Air Force. He served in the Pacific Theater, as an airplane mechanic, and reached the rank of Technical Sergeant. In 1946, he was honorably discharged from the 614th Air Engineering Squadron, 363rd Air Service Group. My father didn’t share war stories, per se. He shared stories about the men he served with and the “downtime” they shared. Some of his service buddies became lifelong friends. My father was a loyal, charming, and engaging man.
John R. Thompson, architect, in his office.
My father re-matriculated to RPI, under the GI Bill, in 1947. He changed his major and graduated with a BS in Architecture in 1951. He then pursued and met the requirements for licensure to practice architecture in New York. During his life he expanded on his credentials and became a Registered Architect in several Northeast and Mid-Atlantic states. Among my father’s first employers were the prestigious New York City firms: Eggers & Higgins and Perkins + Will. One of his first responsibilities, as a junior architect, was reviewing plans by the famed designer I. M. Pei! He also directed renovations to the Chrysler Building in NYC and designed improvements to high end apartments owned by the city’s elite. In 1958, my dad accepted a partnership offer from a college colleague to establish a PA-based commercial and institutional architectural practice. The practice flourished during the ten years that my father continued in the partnership. There are buildings my dad designed during this time that remain in use today—a testament to his commitment to sound and enduring design. In 1968, he left the partnership and accepted a senior-level position with a large Albany NY firm. In the final years of his career, he worked as a Senior Architect with the New York State Education Department, Division of Educational Facilities Planning. There he tapped his extensive experience in academic design to review, approve and inspect public school renovation, asbestos removal and code upgrade programs.
My father retired in 1987. At his “goodbye” party, his colleagues gifted him with a 2-inch-thick binder of heartfelt letters from the many people he worked with that attested to his talent, professionalism, valued service, ability to keep ruffled feathers at bay and wonderfully dry sense of humor. My father was an accomplished architect and an admired and inspirational colleague.
John R. Thompson, American Concert Wind Band, Madrid, Spain.
After retiring, my father re-engaged with his first passions, music, and the saxophone. He joined the local musician’s guild and began playing event and summer concert gigs with area bands. He became a member of the American Wind Concert Band, itself a participant in the Community Band of America (CBA). He took part in several CBA U.S. and European music programs. He played aboard a Norwegian Cruise Line trip through Alaska’s Inland Passage and in “Town Square” concerts during the summer in Germany, Austria, Denmark, Spain, and Italy. One of his favorite life moments, one of the honors of his Catholic life, was playing in concert at the Vatican with Pope John Paul II in audience. My father was a gifted musician.
Amy's mother, Agnes Thompson.
My father met Agnes Moore, the woman who was to become his wife, on her eighteenth birthday. Agnes, an RPI freshman, was heading up the steep campus staircase, "The Approach", as my father, now re-enrolled at RPI, was heading down. An upcoming dance was on my father’s mind. My father decided to ask my mom out. In my dad’s version of the “meeting” story, while he found my mother attractive, he assumed, as a woman in college in 1947, she would be quite serious. He thought she would be a one or two-time date and no threat to his academic concentration. He was, after all, in his late twenties, and buckling down on his BS in Architecture was a number one priority. I continue to get a kick out of this story. I often ribbed my dad, “hey dad, good miscalculation!”
My father and mother married on February 3, 1951, weeks after their January graduation from RPI. They went on, as a devoted couple, to enjoy 62 years of marriage. They based their enduring partnership on shared interests, including music, gardening, current events, boating, raising a series of dogs, most of them named Andre, and in later years travel, camping and cycling. They had three daughters and took mutual care to raise us in an enlightened atmosphere of learning, reading, idea-exchange, art, and music. My father, along with my mother, treasured life and shared the gift of knowing how to embrace it with their progeny.
Young Thompson Family.
My family viewed breakfast, lunch, and dinner as an excuse to have lively conversation. This was a pattern before and after I left home to create my own life. When visiting my parents, we remained at the table, long after a meal was finished chattering away. That’s why, in 2006 or 7, when it became noticeable that my dad wasn’t always fully taking part in our dinner chat, his pointed Irish wit muted and ironic comments absent, I became worried. Did he feel well? My mom said he was fine, just slowing down. It would be a few years before the truth was revealed.
This is the man Alzheimer’s already had a grip on.
MY DAD’S ALZHEIMER’S SPINS MY MOM OUT
There is a plethora of published literature about Alzheimer’s, and its impact on victims. You can find many writings on the various stages of the disease. You can memorize those stages and gage when a patient slips from normal behavior to mild personality changes and then to mild and ever-increasing decline in mental functionality. Watching a loved one transit through the debilitating stages of Alzheimer’s is a somber vigil. The accounts of that vigil and its impact on caregivers, other than statistical guesses on the millions of hours and billions of dollars lost to uncompensated care, are in much shorter supply than articles and papers on medical analysis.
Amy's father and mother on a cycling tour in Vermont.
My mom was an extremely intelligent woman. She was one of the first females to matriculate into an engineering program at Rensselaer Polytechnic Institute (RPI), Troy, NY, in 1947. When she graduated with a BS in Chemical Engineering, she was among its first female graduates. She went on to practice chemical engineering until she left the workforce two weeks before my birth. When my youngest sister neared the age of five, my mom returned to college. She earned an MA in Education and began a long and successful career as a high school math teacher. She was so liked and respected by her students, even after her retirement many kept in touch with her.
My mom was an introvert. She was extremely proud of being a self-reliant woman who sought her entertainment in quiet pursuits. One of her favorite pastimes was reading. She devoured non-fiction works and could discuss many complex subjects with ease. My father, her best friend, however, was her near-only companion for discussions on current events, society, culture, and politics. When my father was officially diagnosed with Alzheimer’s, even though his cognitive decline had been apparent for some time, it was easy for my mom to don the caregiver role whole heartedly and further slip away from anything social. She shut down her own life, and that proved extremely unhealthy.
Amy's mother and father in the nursing home.
My mother became hobbled by all sorts of “what ifs” regarding my father’s state. What if he got lost? What if he did something embarrassing? What if she got sick and couldn’t look after him? What if? What if? What if? She instituted isolating restrictions for herself and my dad as if to build a wall against the “what ifs”. She canceled family visits, doctor appointments, and social engagements with increasing regularity. She stopped grocery shopping, something she loved to do, and asked my sister to shop for her. She started sending rambling e-mails to me about my father and “his future” that were time stamped 2:00 am or 3:00 am. When I questioned the emails, in alarm, she laughed them off as “just thinking out loud” notes. She refused to talk about her withdrawal from the world or the pain she was clearly feeling. She flatly denied that she was living in a constant state of anxiety. She rebuffed all suggestions of help or joining a support group. She declined to see her own doctor regarding her mental well-being or seek therapy. She refused to consider asking for anxiety-reducing medications. She was taught, as many in her generation were, not to expose problems, even to those closest to her. All attempts to intervene were taken as an attack on her intelligence and ability to care for my dad. She began to mistrust me. I wanted her to trust me. I thought that would be important in the future. I backed off but didn’t know if I was helping her by honoring her dignity or hurting her by failing to step in.
One day in 2011, my mother literally sat down, called my youngest sister who lived nearby, and said she wanted to go to the hospital. She didn’t feel right. When my sister arrived at my parent’s home, she found my mother had packed a suitcase and was ready to go. My sister, unable to take time off from work, called me, even though I worked and lived 120 miles away, to take care of my father. My mother was hospitalized, but her symptoms, which varied with each day and telling, were never definitively tied to any physical cause. Her primary care doctor came to believe she had suffered a brief psychotic break caused by extreme stress. I think, too, she just wanted to take a break but was too proud to ask her daughters, or anyone, for help. I believe she thought hospitalization was a good justification to take a needed rest that no one would question.
I took an emergency one-week leave from work to tend to my father while my mother remained hospitalized. My middle sister flew in from her distant home so that we could decide about my mother and father’s care together. My sisters and I, now more focused on my mother’s well-being than my father’s, discussed the situation with the elder care professionals at the life care retirement community where my parents lived. We decided it would be best if my father moved to the community memory care unit.
Fortunately, worn down, my mother agreed to that plan. I think that decision saved her life, although it was too late to fully restore her spirit. Agoraphobia, paranoia and battling “what ifs” dogged her throughout her remaining years. She passed away of COVID-19 in 2020, still very marked by the impact my father’s Alzheimer’s had on her. She tried to protect and save the man who was the love of her life, a companion and soul mate for six decades, and lost. She never really got over it.
What she never took to heart was the fact that she was the only person my dad recognized right until his death. She was the enormous smile he had when she visited him in the memory care unit and later a nursing home every single day in his last years. He knew in his heart, maybe the one organ Alzheimer’s can’t touch, that she was his true love and appreciated her devotion. That was his happiness. I wish it could have been a bigger part of hers.
MY DAD’S JOURNEY THROUGH ALZHEIMER’S
My father was diagnosed with Alzheimer’s around 2010. I was fairly certain that my father was in dementia decline long before this. I think my mother and sisters were too. Even my father knew. In the early years of his disease, before it was confirmed, he commented on his confusion and on not understanding or remembering things anymore. But it wasn’t something I recall anyone in my family openly and definitively discussing until it was “real.” Denial may be the first stage of Alzheimer’s. Oh, it's old age, not Alzheimer’s.
During the first year and a half of my father’s “diagnosed” journey through Alzheimer’s, he lived with my mother in their independent living apartment in a continuing care community. My mother restricted his activity while under her care. There were many things she didn’t think were good for him or didn’t think she could manage if there weren’t rules governing their life. Accompanying her to the grocery store was out; he might wander off. Playing his music was discouraged; it might confuse or frustrate him. She tried to curtail him leaving the apartment on his favorite “in-house” missions, such as getting the mail or emptying the trash; he might… who knows what. When he moved to the memory care unit, however, his world, unlike what you might think, opened up again. The point of memory care is to keep dementia patients active under watch of dementia care professionals in a secure environment.
Amy with her father in the nursing home.
My father’s memory care experience was overall positive. My mother visited him daily. They enjoyed chatting, playing cards and working on puzzles. Saturday night was movie night. Sunday was Bingo Day. Bands were often booked for musical events, storytellers for story hours. And holiday events, national or not, were celebrated with fanfare and cake. My mother and father enjoyed many of these events together. It was a happy, stress-free time for both of them.
My dad was fortunate that, after a time, he was given a private room where he could set up his saxophone and did. He played almost daily to the delight of his fellow residents and the staff. As his disease progressed, he forgot or confused the details of his life, but never forgot how to play his favorite jazz and swing-era tunes or how to read music. Researchers who have noted that music may hold the key to easing the pain of Alzheimer’s sufferers are on to something. I have witnessed its upbeat effect on my father.
In the memory care unit, my father was given the opportunity to take field trips. He visited a historic farm one Easter season and returned ecstatic with tales of newborn lambs and baby chicks. He went horseback riding. He loved that adventure, although he returned wearing a light blue woman’s jacket, overly snug on his frame, instead of his own tweed coat. We laughed. He laughed with us, his eyes alight and crinkled. And it didn’t matter that he didn’t know why. He insisted the light blue coat was his. I don’t think we ever found his own coat.
He read and reread and reread an old issue of the Magnificat, a spiritual periodical. Or maybe he just held on to it. He maintained his faith, cheer and sense of humor. We were grateful for that. Many of the memory-impaired are despondent or despairing.
In his last year of life, my dad was transferred to a nursing home. He required more care than the memory care unit could provide. Contributing to the decision was a swallowing impairment, common in Alzheimer's patients and which, ultimately, was a factor in his death, and emergency room visits and hospitalizations for low blood pressure and fainting related falls. On one of his hospital stays, he was given morphine in the emergency room prior to being admitted for observation. Apparently, the doctor assigned to his overnight care did not know about the morphine. Finding my father delusional and with low responsiveness, he informed us he was in the very last stage of Alzheimer’s. My mother and I accepted the diagnosis, but my youngest sister refused to believe It. She was very upset that we were going along with the doctor’s prediction of death sooner than we expected. This caused family tension for some time. My little sister was right, though. As soon as the morphine wore off, he returned to a mid-stage of Alzheimer’s.
In another hospital stay, the hospital staff wanted my father to sit occasionally instead of remaining in bed. The chair they provided was wired with a personalized exit alarm. My father’s name was entered into the alarm system so, should he try to stand up, the system said “Jack, sit down!” Unfortunately, the warning didn’t register with my dad. He’d get up and amble away as the system continued bellowing, “Jack, sit down! Jack, sit down!” Not funny, but funny.
During the nursing home year, he didn’t always know who I was when I visited. He enjoyed seeing me, though. His beautiful, room-brightening smile always greeted me. We had delightful, if limited, conversations, even when he thought I was just someone who stopped by. What he lost, and what I missed, though, were the life stories he had loved to share. Stories he had told often, but ones I wanted to hear again. I could no longer ask him to clarify or expound on the details of his or his parent’s lives for my ancestry records. He couldn’t remember them, although I know they remained in his mind—somewhere. I glimpsed them once in a while. A few months before he died, I visited a small summer farm his family once owned. I took digital pictures. I showed him the pictures through the camera’s tiny playback frame. He lit up. He knew what he was looking at, even though he could only illustrate his recognition by grinning broadly as I shuffled through the shots.
A few weeks before my dad’s death, his roommate passed away. The morning of his passing, my father saddled up to his friend’s bed and began singing to him. He chose that old time tune, “I’ve Been Working on the Railroad”, as if offering a goodbye song to the work of living. He didn’t know the man was dying specifically, but he somehow sensed the need to provide a send-off. My heart swells every time I think of that story. It is sad, sometimes unbearably so, to witness what someone with Alzheimer’s loses–it seems their very core. It is a glorious miracle to witness, or hear about as I did, that Alzheimer’s may not be capable of stripping a victim completely bare of their capacity to give and feel love.
Two weeks before my father died and just after his birthday, my sister, an accomplished pianist, played a private concert for him on the nursing home’s piano. As he listened to her play, tears ran down his face and trickled through his beard. He couldn’t find grateful words but touched his chest with one hand, a gesture of rapture, as I reached out to hold the other. The beautiful music overwhelmed him. I think my sister gave him the last best day of his life. Maybe one of the best days in his whole life, only outshone by March 18, 1947, the day he met my mom, and the births of his daughters.
The night my father died, as he released his last breath, his hospice care nurse cracked open the window near his bed. I asked why. I was told it provides an opening for the soul or spirit of the departed to journey away from earthly life, walls notwithstanding. Long before my dad officially left me on October 2, 2014, behind the impenetrable wall of Alzheimer’s, I had lost an opportunity to tell him deeply why I was beholden to him. I could only tell him, really thank him for being my dad, through the eulogy I gave on the day of his funeral.
My father, like others who succumb to Alzheimer’s, made my world habitable and left good, strong footprints behind for me to follow. He was an accomplished musician. When I hear a saxophone, I remember the sound of my father’s own and his love of music. He exampled passion for me. He was a talented architect. Many of the buildings my dad designed remain in use today, including an elementary school I went to from age 7 to 12. That school featured a fun and much touched fossil wall for children to explore. My father taught me to be thoughtful and detailed in my work. My father served his country during World War II. His service taught him to seek a meeting of the minds before engaging in a meeting of the fists. My father taught me to be empathetic and generous. The part of my father’s DNA that was Irish shone in his wisdom and wit. Some of his strikingly observant comments, always wryly expressed, should have been published for the good of mankind. My family dubbed them Jack’s Points. He taught me to think and see deep. My father was a dapper dresser. He owned hundreds of ties, jackets, and shirts. Unfortunately, that resulted in my expensive taste and commitment to shopping. My father was my mother’s best friend. He adored my mother. He taught me what love is. My father loved me. He let me formulate my own wishes and pursue my own dreams. He believed I was the best. He didn’t always like the boyfriends I brought home. He said I deserved better.
My dad deserved better than Alzheimer’s.
Walk Poster, Worcester, Massachusetts.
WHY I SUPPORT THE WORK OF THE ALZHEIMER’S ASSOCIATION
My father’s specific Alzheimer’s journey, its impact on my family, and his death were unique. Unfortunately, on a national scale, succumbing to Alzheimer’s is not unique, especially among seniors. Each year it gets less and less unique. By the year 2050, barring a breakthrough in prevention or cure, the number of people age 65 and older with this fatal disease is projected to reach 12.7 million.
While the mortality rate from other leading causes of death, such as cancer, strokes, and heart disease, has been decreasing, the opposite, and at an alarming rate, is true of Alzheimer’s. Why? Interest in and funding for Alzheimer’s research is far less than four other major causes of illness and death in the U.S.
Amy Thompson at the Walk to End Alzheimer's in Las Cruces.
I chose to support the work of the Alzheimer’s Association as my means of fighting Alzheimer’s. Their comprehensive mission addresses many sides of the disease—living with it and fighting against it. They provide critical guidance to sufferers and caregivers that enables them to manage, with as much knowledge, love, and positivity as possible, the impacts of a progressive disease and death sentence. At the same time, they aggressively support and fund Alzheimer’s treatment and cure research. And, on behalf of folks like me who want to have a hand in eradicating Alzheimer’s, they host easy to take part in programs that raise funds for medical research.
I have taken part in the Alzheimer’s Association “Walk to End Alzheimer’s” as a donor, walker and/or fundraiser since 2014. The funds raised though the walk have contributed to many important milestone accomplishments in the fight against Alzheimer’s. This fundraising, research and work will continue until Alzheimer’s is a footnote in medical history.
Mention of Alzheimer’s always brings my father’s face, his life and his Alzheimer’s journey to mind. His loss to Alzheimer’s, which wiped out his ability to remember his own life, saddens me. If we could stitch the millions of Alzheimer’s faces together, share their beautiful life and tragic end stories, we would have a powerful call to action—a call to make the face of Alzheimer’s that each of us see, one of the last faces of Alzheimer’s anyone sees. Won’t you add your story? And, this coming fall, support the Walk to End Alzheimer’s.
The Walk to End Alzheimer’s (the Walk) is an annual event held in over 600 U.S. cities. Locations typically choose a date between August and October. You can support the walk by making a general donation; donating to a walker or team; or by becoming an individual or team walker, committed to fundraising. Here’s where to go:
SW Regional Walk in Las Cruces: act.alz.org/walklascruces
New Mexico Statewide: act.alz.org/nmwalk
Thank you for reading my story. And if you decide to help, thank you from the bottom of my heart for supporting the efforts of the Alzheimer’s Association!
Why I Walk
This video, produced by the Las Cruces Walk Committee, reveals what motivates Amy Thompson West in the fight to #ENDALZ.
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