The Life and Death of a Gentle Soul: My Cousin Alan George Goldstein
11/11/1944 to 02/14/2022
This is a story of survival against all odds.
It is the story of a man, with a diagnosis since early childhood of “Profound Intellectual Disability. Non-Verbal; Impulse Control Disorder” institutionalized and abandoned but with an amazingly strong will to live.
It is the story of my cousin Alan, about whom his very caring group-home staff wrote in Nov. 2009, Alan is:
“A well -liked middle-aged man whose quiet and gentle disposition is appreciated by those who know him. He is usually calm and friendly….” although he doesn’t speak, “he is able to make simple decisions.”
“Alan participates in social activities when prompted and responds well to staff interaction….Alan is very adamant about certain things…” He doesn’t like the dentist or getting is nails cut but enjoys messages. “Alan responds to verbal commands….
“Alan enjoys community outings, music, television, magazine pictures, walks, car/van rides, bowling, and ball play. He particularly likes the put-of-doors and nature, specifically wind, birds and flowers.
“He is aware of how objects are arranged in his environment and will rearrange a picture on his wall. Alan likes train rides and watching trains. Alan is Jewish and attends the synagogue sponsored holiday activities. He does not like boat rides.”
Until today, the two most difficult, torturous decisions in my life were losing my firstborn and putting my beloved Mama cat down. Mama was a love-cat who slept with me every night and caused not an ounce of trouble. She had been a feral cat and pregnant when we found her. When the time was right, we found homes for all of her kittens, but no one wanted her, so she became ours.
She grew old and developed a large tumor on her side and the doctors kept telling me, “You’ll know when the time was right.” But I was also told that animals that are very sick don’t eat and she had a ferocious appetite! The more she ate, the larger the tumor grew. She was incontinent and messed all over the house and that added to the difficulty of making a life-and-death decision. Was I wanting to end it to end the mess or was it really in her best interest? I agonized back and forth wanting a sign, wanting to doctor to make the decision I couldn’t. Wondering if I was being selfish and letting her suffer needlessly. I kept second-guessing if I had waited longer than was humane to make that decision.
In the end, I cradled her in her my arms as the sedative and final injection was administered. I wept and rocked her and told her what a good, loving friend she had been to me . . . And then I brought her home still wrapped in the blanket and dug a resting place for her in my backyard.
And now this sweet man has died. All alone. Not the only one to die alone in the midst of this pandemic.
His name is Alan and he is my first cousin. Son of my mother’s brother, Joseph, and wife, Millie. Their second child. He was born in Brooklyn on Nov. 11, 1944, less than three months before I was born in the same hospital.
In those days we all lived in Brooklyn and all gathered many a weekend at my maternal grandma’s house in East Flatbush or at Aunt Sunny and Uncle Dave’s house off Kings Highway, in I think what is called the Midwood section of Brooklyn. There were two groups of cousins close in age. My sister, three years older, and three cousins: Joann, Marion and Carole were all very close in age and Alan, cousin Martin and I comprised the younger peer group.
One of my earliest memories of my Cousin Alan stands out as clearly — and as painfully — as if it was yesterday. Alan is pointing to a bottle of milk on our Grandma’s kitchen table. Pointing and grunting. “Say milk,” his mother, my aunt Millie said. “Say milk,” my grandma said. Over and over he grunted wanting some milk and over and over they refused trying futilely to get him to speak. With tears in my eyes and pain in my heart at their stubborn meanness, I cried: “Just give him a glass of milk. He wants milk.” But they kept repeating their demand that he speak, which he couldn’t.
When Alan and I were both five and ready to start kindergarten, tests determined that Alan was not deaf, which was thought to have caused him to be mute. The year was 1950 and he was diagnosed “severely retarded” and sent away to a facility in Bear Mountain, NY. Today, of course, I have no doubt his diagnosis would be autistic and institutionalization would be unlikely.
I visited him many times with my aunt, uncle and his sister. We brought him toys and took him out on the lawn or for a ride to a nearby park to play and have a picnic lunch. The visits left me with nightmares of the snake-pit he was in. People of all ages, young and old in a dayroom. Rocking and drooling shouting, self-harming. I saw no humanity, except for our brief outings with Alan. And then his grabbing onto to us not to leave and crying as he was taken back to that awful place.
I went on with my life, barely thinking of my cousin, Alan, except in tormented nightmare flashbacks of the sights and sounds of that dayroom, reminiscent of a cuckoo’s nest. I married and had a family and remained too pre-occupied to think of him. In 1993 Alan’s mother, my aunt Millie passed away. Four years later his father, my uncle Joe, died in 1997. In between I lost my mother, my father and my eldest daughter within nine months in 1995.
I contacted the group home he was now in. I learned that Alan had hypertension, hypercholesterol; Left eye cataract-lens implant; had had basal cell carcinoma in 2003 and multiple tooth extractions in 2005; gerd and an esophgeal mass resected in 2002 and gallstones. Later he suffered multiple upper respiratory infections that left scarring of right lung, 7/8/11, 10/10/11, 10/12-bronchitis and on 05/24/19 was diagnosed with COPD.
I visited. It was a far cry from the institution he was in as a child. It was small and very homey. From the outside you’d never know it was anything other than just another private house on a tree-lined street. No signage. The staff to adult patient ratio was very high and they were very caring. Alan was taken on group outings to parks, which he enjoyed.
I contacted Alan’s sister, Carole, and learned that they had all long since stopped visiting him and neither she, nor her psychologist husband Gerald Melnick, had any interest in him whatsoever. The caring staff encouraged me to become his guardian. I wrote a certified letter to his sister which was refused. I then had her subpoenaed. The process server told me they saw people peering out the windows, refusing to open the door. And so, on Feb 28, 2005 I appeared in court and became Alan’s legal guardian; able to advocate for him.
On 07/18/19, when Alan was 74, I received the following email:
“Alan went to Nyack Hospital @ 4pm for Tachycardia, High Blood pressure, Running Nose. Weakness. & difficulty in walking . Admitted in Nyack Hospital as a dx of Pneumonia Getting IVF & I/v a/b therapy . Staff [from his group home] with Alan 24/ hours.”
His health continued downhill from there on. He had had COPD for years but now began having repeated bouts of pneumonia. In and out of the hospital and back to the group home.
“Jul 26, 2019 at 3:43 PM: Remains in Nyack Hospital for Pneumonia. continue on I/V antibiotics as per Nyack Hospital, when condition stabilize will transfer to Toll’s Toy [Tolstoy] Nursing Home for REHAB.”
“August 12, 2019 9:13 AM: Alan currently in Tol’s Toy [Tolstoy] Nursing Home For Rehab. He need Physical Therapy for Ambulation & Pneumonia is resolving slowly. Still on 02 as per Nurse in Nursing Home, Alan progressing gradually. As soon 02 off & start to walk good he will back to us in North Brook. Myself & House Staff Visiting him regularly . If you want to contact Nursing Home, This is the. Day shift charge Nurse. Thanks”
He grew increasingly weak. He had difficulty eating and was put on a soft diet and had to be moved to a new group home — one without stairs. I knew how difficult change was for him. Then his last bout with pneumonia left him too weak to walk at all and he was sent to a rehab. I drove the two hours each way to see him there in Nov. of 2019 and he seemed hearty, under the circumstances. He refused to feed himself but ate when I fed him.
In April, 2020 I became increasingly concerned about news reports of high levels of COVID-19 in nursing homes. At 10:30 pm on April 28, I was called and told Alan had tested positive for Coronavirus and was being transferred back to Nyack Hospital again.
After a sleepless night, I phoned the hospital in the morning. I thought of them trying to put oxygen tubes in this nose and him pulling them out and wondered if they’d have to put him in a comma. He always needed to be sedated for every dental procedure including cleanings.
I fought some bureaucracy to get him the equivalent of a DNR. It’s called MOLST form for Individuals with Development Disabilities and states that LST (Life Sustaining Treatments) will be withdrawn or withheld. I had far less hesitation about that decision than putting my cat down. My cat was mobile and ate well. Aland could do neither. I believe in my heart it is the merciful thing to do and the staff who knew him best supported my decision though it was complicated because he’s a ward of the state.
Next morning, Alan was not in ICU, nor had he been intubated. I was assured they will keep him comfortable and pain-free
Of course, like all others with COVID, I could not visit him.
On May 12, 2020 Alan was given Plasma Therapy for the COVID and miraculously — after all he had been through — returned to the Rehab/Nursing home on IV fluids and nasal oxygen, bed-ridden and has developed bed sores that require abrading.
“Life goes on, long after the thrill of living is gone” (John Mellencamp, Jack & Diane).
January, 2022: Alan never returned to his group home. He went from rehab to a nursing home where he remained still bed-ridden. On Jan 26 he had fever and seizure and was admitted to the hospital with sepsis and damaged kidneys. I spoke to the doctors and made sure, once again, they knew he has a DNR. On Feb. 1, 2022 his sepsis was successfully treated and he was discharged from the hospital.
Two weeks later, after talk of palliative care. On Feb 14 he was rushed back to the hospital with difficulty breathing. He didn’t make it.
Alan is survived by his sister Carole Melnick, her husband Murray Melnick, psychologist of Freeport, NY; his cousins: Martin Goldstein of Hollis, NY; his cousin Joanna; and was predeceased by his cousin Marion Goldstein West, married to Cy West, of Florida…none of whom offered any help even for his burial. He is also survived by his cousin Anita Seltzer of Monroe NJ, and his nephew Gerald Melnick of Woodbridge, CT.
I have never liked the expression: “They are in a better place.” But Alan had less than no quality of life. This is a story of a gentle soul who survived despite all odds and managed to enjoy outings to parks and boat rides.
Alan was laid to rest in peace and with dignity at Mt. Richmond Cemetery, Stateb Island, NY
With tremendous gratitude to all who so lovingly cared for Alan.
Donations in Alan’s memory to the Hebrew Free Burial Association would be greatly appreciated.
