- 請往下讀中文
We shared a life with mom for the past 18 years in a household of three generations of women, 2 cats and 1 dog. Mom enjoyed an active retirement for 10 of these years before she was diagnosed with stomach cancer. She was a passionate advocate for the Chinese elderly during her last professional years as the director of Visiting Nurse Services Chinatown Center, and after retirement, she continued her advocacy work volunteering as the president of Greenburgh Evergreen Club in White Plains. To her family, she was an exemplary filial daughter, a steadfast pillar for the 7 siblings (there was an 8th but not with the family) and their off-springs, a worry too much mom, and an amateur art critic who believes her grand daughter’s 4 year old scribble can rival Picasso’s. And everyone’s go-to person for medical advises. In her private time, mom loved arts, museums, classical music, ballet, Rockefeller’s Christmas Tree and the festive 5th Ave window display, the orchid and train shows at the Bronx Botanical Garden, fireworks on the 4th of July, biking or walking around Rockland Lake, swimming at the YMCA, daily walks with our dog, Athena, and counting all the dogs she meets on the walk; the old maple tree that was in the backyard and the reason why mom bought the house we live in. She was so attached to the tree we had a farewell ceremony before the tree had to be cut down due to decay. She had a vegetable garden for some years, took up pottery for one season, piano lesson for another. She kept herself busy trying all the things she had wanted to do but couldn’t, due to a lifetime of dedicated nursing career.
Since her diagnosis of stomach cancer, her health began the imperceptible yet steady decline, little by little she had to quit all the activities she loved, and eventually, leaving the house became a difficult task. From 2019 to the first half of 2023, she was believed to be suffering from a serious anxiety disorder without known cause, and it wasn’t until August she was finally diagnosed to have advance Parkinson’s disease. It was baffling to everyone and especially challenging for us, to witness and care for a woman known to be strong, independent, wise, physically active, to gradually shrink her world, her mind, and her body to a singular existence. I can’t help but wonder, had there not been the pandemic years when most of her doctor’s visits were conducted through telemedicine call, had our healthcare system been more about the whole person care rather than multiple specialists each for one part of the human body, will someone noticed the early onset of symptoms, now in hind-sight, that could be attributed to Parkinson’s Disease?
I want to thank the following people who helped care for mom from 2020 through 2023. My brother Lei Chou came and stay with us until the end of 2021, besides taking turns with me to tend to mom, he turned our barren backyard into a botanical garden because mom can no longer go to the one in Bronx. Her private aide Daniela Cortez joined our care team for 7 months from the end of 2020 to mid 2021 and helped restore her ability to use the walker again, and returned to help during her final months from the end of October to the day after Christmas. Her grand daughter Lei Frances was her aide in 2023 took turns with me to tend to her care and has been her over night safe-guard since she needed one. My aunt Sui Fang Min who came to help every month since 2020. She was the steadfast cheer leader/life coach that ensures mom drinks enough fluids, eats all her food, and daily exercises; her presence brought a sense of normalcy to our household where we can laugh and enjoy life a little. Her in-home PT/OT from Fox Rehabilitation. Her various NPs provided monthly in-home primary care through Vytalize. And United Hospice of Rockland Country who supported me 24/7 to ensure her last days were comfortable. I don’t think mom can dream up a better home care team than the one she got.
When my grandmother passed away mom was depressed for a long time. She said that loosing of one’s mother will create a void so immense, it’s completely unfathomable without experience it first hand; harder even when she didn’t get a chance to say goodbye. Her words kept playing in my head in the final month as I prepare myself for what was beginning to look like the inevitable. In the last hours by her bedside, surrounding ourselves with the soundscape of the ocean, rain, birdsongs, and Tibetan Buddhist’s melodic chant, I realized she was imparting the final lesson to me about dying and death. It was a long good bye til her last breath, yet, the most profound lesson about life.
Hug your mom today and tell her you love her, do this every day. I wished I had.
在過去的18年中,我們與媽媽分享了三代女性同堂,兩隻貓和一隻狗的有趣日子。媽媽在被診斷出患有胃癌之前,積極的享受了10年的退休生活。 在她擔任唐人街訪問護士中心主任的時候,她一直熱心的為中國老人做健康上的種種服務,退休後, 她馬不停蹄的繼續從事White Plain 常綠俱樂部主席的志願工作。 對於她的家人來說,她不僅是個孝順女兒,也是7個兄弟姐妹及其後代的堅定支柱。 對於我們,她是個愛擔心的媽媽,認為外孫女4歲的塗鴉可以與畢加索媲美的業餘藝術評論家,以及大家的醫學顧問。私底下,媽媽喜歡藝術,博物館,古典音樂,芭蕾舞,洛克菲勒的聖誕樹和第五大道的假日櫥窗展示,布朗克斯植物園的蘭花和火車展, July 4 的煙火,在Rockland湖邊騎自行車或散步,到YMCA游泳,每天與我們的狗雅典娜一起散步,併紀錄她在步行中遇到的所有狗狗,後院裡的老楓樹,也是媽媽買我們住的房子的原因。她對這棵樹有很深的依戀,當樹生病要砍掉之前,我們還特別舉行了告別儀式。她有幾年忙著種菜,上過幾個月的陶器課,幾個月的鋼琴課。由於一生致力於護理事業,這些都是她一直想做但沒時間做的事情。
自從診斷出胃癌以來,她的健康狀況開始隱隱惡化,也不得不一點一點地放棄自己喜歡的所有活動。最終, 步出家門都成了艱鉅的任務。從2019年到2023年上半,她的診斷是患有嚴重的焦慮症, 直到今年八月才被診斷出患有帕金森氏病。所有見到或是照顧過這個一向堅強,獨立,睿智,身心活躍的女人,逐漸縮小她的世界,思想,和體能,都感到困。我想問,如果不是因為新冠,大部分的醫生都是用電話會診, 如果我們的醫療系統是針對整體,而不是分門別類的掌控於多個專家,會不會有人會注意到她早期的症狀可能歸因於帕金森氏病?
我要感謝以下從2020年到2023年幫助照顧媽媽的人。我的弟弟周磊(Lei Chou)回來和我們住在一起直到2021年底,除了輪流跟我照顧媽媽, 他把我們的後院變成了植物園,因為媽媽不能再去布朗克斯了。從2020年底到2021年中,Daniela Cortez加入了我們的護理團隊7個月,並幫媽媽恢復使用助行器的能力。 從10月底到聖誕節後的第二天,Daniela 也陪在她的身邊。她的外孫女雷·弗朗西斯(Lei Frances)於2023年輪流替我照顧媽,尤其最後幾個月,媽媽的一切都無法自理。她也一直是媽的夜間保安。自2020年以來,我的三阿姨閔穗芳每個月都會來陪媽媽。她是媽的忠實啦啦隊長/生活教練,使盡全身招數的鼓勵媽媽喝足水,吃完飯,和簡單的運動; 她的造訪每每也帶來一點正常感,讓我們可以笑笑的過生活。要感謝來自Fox Rehabilation的家庭PT / OT。Vytalize的每個NP每月提供家庭醫療訪問。Rockland聯合臨終關懷醫院以24/7全天候支持我,以確保她的最後日子過得舒適。這應該是媽媽自己也無法想像的家庭護理團隊。
我祖母去世時媽媽悲傷了很久。她當時告訴我,失去母親的巨大的虛無感是沒有經驗過不能想像理解的。尤其祖母走得突然,她連道別的機會都沒有。她的話在最後這個月裡一直在我的腦中迴轉。我陪在她床邊的最後時刻裡,小小的空間裡充滿了她還能聽到的聲音:最愛的海洋,森林,鳥鳴,和西藏的音樂般的佛經 。這時我才意識到她正在向我傳授有關死亡的最後一課。直到她的最後一口氣,這不僅是很長的道別,也是關於生命的最重要的課。
今天就去擁抱你媽媽,告訴她你愛她,每天都要。我希望我有。