John Preston Caldwell, Jr.

August 21, 1959 - May 2, 2026

“Don’t grieve for me, for I know where I am going.”

John (aged 66) died on the evening of Saturday, May 2, 2026 after a 19 year battle with blood borne cancer and debilitating paranoid schizophrenia for over 40 years. He was predeceased by his father, John Preston Caldwell (aged 51 in 1989) and mother, Joan Mason Caldwell (aged 75 in 2014). John is survived by his life-time love, Sheila Dowd of Rochester, NY; daughter Emily Malara and grandson, River Perin of Philadelphia, PA; brother, Scott (Vicki) Caldwell of New Milford, CT; sister, Jennifer (Joe) Lonardo of Fairport, NY; neice, Shea (Nico) Cavero of Rochester, NY; neice, Heather (Ray) Ashworth of Greece, NY; nephews Zachary and Malachi Caldwell of New Milford, CT; aunt, Marcia (William) Cook of Norwich, NY; uncle James (Heidi) Mason of Springfield, OR; uncle, Stephen (Cindy) Mason of Gales Creek, OR; great-nephew, Lance Berry of Rochester, NY; great-niece, Gwendolyn Berry of Gilford, CT;  as well as numerous cousins.  

As a youth, John began to play trumpet while at Cobbles Elementary School in Penfield, NY. After moving to Fairport, NY, he continued his passion for trumpet and played in many of the school bands as first chair, including Marching Band, and earned second place for trumpet at All State. During that time John was also actively involved in Boy Scouts, from Cub Scouts all the way to earning his Eagle Scout (one of his proudest achievements) with the difficult project of assessing all the house numbers in the Village of Fairport, determining which homes needed new numbers to bring them to code and then, after ordering all those needed, organizing his Boy Scout troop to install them on every house necessary to make sure each dwelling in the village was compliant for Emergency Services identification. While a member of the Fairport Boy Scout Troop 209, John shared his talent and joy playing the trumpet by becoming the bugler for the troop, playing Reveille, Assembly, To the Colors and Taps frequently.

After graduating from Fairport High School in 1978, John attended Cornell University where in 1982 he earned degrees in both Electrical Engineering and Computer Science, in only three and a half years of study, while his last semester was spent working in a co-op. John was told by his professors that he had landed the highest paying position of his entire Electrical Engineering Class. At IBM, John swiftly rose to a management position, but soon after that he had his first break with Paranoid Schizophrenia. Despite that, he continued to work for IBM in Fishskill, NY, with periodic Paranoid Schizophrenic episodes, until his father’s death in 1989, when he chose to move closer to his mother who lived in Pittsford, NY, at the time.  He moved into an apartment in the city of Rochester and was able to secure a position with Xerox, the same company his father had worked for until his untimely death. As time went on, John’s Paranoid Schizophrenia interfered with his ability to perform well at Xerox and he was given permanent medical leave, for which he received benefits until about 15 years before his death, when Xerox eliminated the position and therefore, no longer needed to continue to pay him disability. Luckily his mother had anticipated that and made sure John was financially secure for whatever care he might need in the future.

John vacillated between independent living, the Strong Memorial Psyche Ward, halfway houses, such as John Romano House of Rochester, NY and independent living again after his release from Xerox. This cycle repeated frequently enough over the years that John was finally placed in the long term facility, Cornerstone, near Monroe Community College, run by the DePaul Group, well known in the Rochester, NY area for excellent psychiatric care. While there, John learned to make friends with the voices in his head and though he could not function independently, he no longer seemed to suffer as badly from the effects of his Paranoid Schizophrenia.  Despite his disease, he was generally happy-go-lucky, making friends wherever he went, eagerly chatting with people and trying to make them smile, or better yet, laugh.  Eventually, when the new DePaul facility, Halstead, located near St. Mary’s hospital in the heart of Rochester, NY, was completed, John was moved there. While the facility and staff were excellent, especially Sandi DiBenedetto, the receptionist who was a Godsend to those in the family caring for John, it was not necessarily placed in the most desirable part of town. There were less restaurants, stores, etc. that John could walk to than in the area surrounding Cornerstone. Despite that, John found a Chinese restaurant, China Star, that he frequented at least weekly, until the walk of a little over half a mile became too hard for him. 

Halstead also offered John the opportunity to be reunited, after many years of separation, with the love of his life, Sheila Dowd, who moved into her own room, during John’s stay there. John and Sheila, who suffers from Manic Depression, originally met during one of his many stays at the Strong Memorial Psyche Ward. They became great friends, had planned to marry and at one point lived together, but both their long term emotional instability made it impossible for either of them to live on their own, outside a facility. In the end, they never legally married, though John was known to call Sheila “his wife” on many occasions throughout the years. On February 6, 1990, they welcomed a daughter, but given their circumstances, were forced to put her up for adoption. Though the adoption was closed, John’s mother added a letter to be given to the child, Emily, when she was 18, feeling the need to explain the medical history as well as why she was put up for adoption. Since Joan Caldwell never moved during that time, Emily was able to contact her. Eventually Emily connected face to face with her biological grandmother, Joan Caldwell, her Aunt Jennifer’s family, as well as her Great-aunt Marcia, Great-uncle Bill and cousin Micaela (Cook) Karlsen’s families. Jennifer managed to arrange for John to meet Emily in person at a meal at Perkins in Fairport many years ago while John was still physically able to leave Halstead for an outing from time to time. After John moved to Wesley Gardens, a full nursing facility, he was delighted to hear the news that Emily had made him a grandfather with her son River, born July 5, 2025, who everyone says looks just like John when he was young.

During the years John was in the Rochester area he was included in as many family events as was feasible, and therefore was a major fixture in the family. Often times, his mother, brother or sister would create outings for John to make sure he was not simply trapped at a facility. This became even more vital when his mobility decreased and he could no longer get himself to places by walking. Sadly he did not like to use the vast bus system that Rochester has, but luckily the family was able to elicit help from ride services to get John to and from his many medical appointment,

Over the past 19 years, John has suffered from a blood-born cancer that required him to have many transfusions. Slowly, he lost more and more weight, despite eating a great deal. During the past few years, the transfusions were becoming more and more frequent and still, he was getting weaker and weaker, falling often and eventually developing sepsis in March 2025. After a 3 month hospital stay, it was clear that John had become too weak to stay at Halstead, so he was moved permanently to a full nursing facility, Wesley Gardens in the heart of Rochester’s art and museum district. There he tried to continue rehabilitation to walk again but found it too exhausting. One week he had to have 7 transfusions to keep his levels high enough to function well, and he decided it was enough.  He was not getting better. The transfusions merely stretched out John’s slow decline and it was clear he would be totally bed ridden before too long. His Oncologist made sure both his sister Jennifer, who was the responsible party in the family for John’s care since their mother’s passing, and John truly understood what this decision meant. John said, “Yep. I will die. It’s OK, because I know I am going to Heaven.” John had lost almost all quality of life, no longer seeing Sheila nor going out to restaurants with his sister Jennifer because he could not walk, even with a walker, very far. Jennifer, instead, had begun to bring food to him weekly, but even that was hard to eat as his spleen enlarged and pressed on his stomach. The Oncologist gave a prognosis of only 4-6 weeks, at the tail end of September 2025, when John decided to forego any more transfusions. Luckily, he was able to last much longer, maintaining his mischievous smile, delightful sense of humor, great pleasure of life and gratitude up until the past few weeks when he was simply too tired to seem enthusiastic when someone came to visit. In the end, he died, as we all hope to do, secure in his profound faith, without any pain, peacefully in his sleep.

One calling hour will be held at Jennings Funeral Home, 1704 Penfield Road, Penfield, NY, at 11 AM on Saturday May 16, 2026. At 12 PM a memorial service for John will take place at Jennings, with a short graveside service immediately following at White Haven at 210 Marsh Road, Pittsford, NY. 

In lieu of flowers, please send donations to the Schizophrenia & Psychosis Action Alliance: www.sczaction.org/donate