Planning In Advance: A Story With A Moral By Alice Herb
The story I want to tell you is real. I’ve lived it and it has now come to an end. It is perhaps bittersweet but I prefer to think that it is a “feel good” story that has a lesson to heed: the best-laid plans are often the best.
It all started when I was a little girl, still living in Vienna. We had a large family but my father, the 10th child in his family, had a special bond with his younger sister, #11. We visited often and for me, it was always an adventure. My uncle, a musician, would entertain me with music and wonderful tales of the world of music. My aunt, a French teacher, was well versed in what children loved. And the toys were wondrous. But the sadness in their life was their only child, Fritzi, two years younger than me, who was both mentally and physically disabled. Though outwardly cheerful and full of fun, my aunt was obsessed with what would happen to Fritzi if she and her husband were ever unable to care for her. It was before we left for the States when I was either 4 or 5 years old when my aunt told me that she expected me to take care of Fritzi when they no longer could and, if I did not do that, she would haunt me for the rest of my life. I don’t know if she meant that but a little kid is likely to take talk like that seriously- and I did. Moreover, as I turned 5, the Germans were already taking over Austria, a warning signal for Jews to take flight. And the family dispersed to other parts of Europe, Palestine, the United States, South Africa, Shanghai, or wherever.
Happily, Fritzi and her parents ended up in New York as well and our two families remained very close. Over the years, however, Fritzi became increasingly disabled, hampered by both her severe mental and physical limitations. She was never able to manage any part of her life. She needed total care. Her parents made life as pleasant as they could, living in a neighborhood where neighbors became friends and caregivers. But as the years went by, it became clear my aunt had every intention of pressing me into service as the ultimate caregiver. Most of the family died in the Holocaust and those that survived never came to New York. Her focus on me seemed prescient. My uncle was always realistic about Fritzi’s situation. My aunt could never accept what had happened and only worried about the future.
Once I became an attorney, my own life grew complicated and I feared for my own future and that of my children. I was not rich and I would not be able to have Fritzi live in my home. Fortunately, with my legal training and friends who were professionals in special education and disabilities, PLANNING started in earnest. On the recommendation of a social worker friend, I managed to bring both my aunt and uncle for a consultation with a geriatric social worker who convinced them that finding a place for Fritzi to live was imperative and that all children leave home for one reason or another. United Cerebral Palsy (UCP) was just then constructing a new residence and we were to concentrate on getting an apartment there. My aunt, who was active in the organization, managed to get a spot on the list of future tenants. Shortly after the building was completed, my aunt died and my uncle, though expert in taking care of Fritzi, was totally impractical in the ways of the real world and could not navigate everyday life. I needed to take the next step – convincing my uncle that living independently was no longer feasible and the new residence would present much-needed help. He ultimately agreed.
Planning for this eventuality paid off handsomely. To my great surprise, they were assigned an apartment in the new building. Services included an aide who came each morning and evening to help with personal hygiene, dressing, food preparation, and bedtime. Across the street was the main building where classes were held to help residents learn whatever they could to become more self-sufficient as well as providing exercise time and leisure activities. One additional benefit was that my uncle had time during the day to attend to his own life, limited though it had become. Once they had settled in, I was determined to plan for the next step – the possibility that my uncle might not be there forever and that he needed budget management help since there weren’t enough personal funds to assure future maintenance for Fritzi.
With the consent of my uncle, I drafted a will while a colleague of mine drafted a trust agreement both of which my uncle agreed to and executed. Within a few years, my uncle showed clear signs of dementia and required transfer to a full-service nursing facility. Fritzi could not live in the apartment by herself. I had to find a good home for her. I was fortunate to have a close friend who was able to advise me to keep her within the UCP network and hire aides until a placement could be made. The excellent social worker at UCP assisted me and we were able to keep Fritzi in the apartment until a suitable placement was available. That took nearly a year but the aides I engaged were highly recommended by another cousin and so the transition moved along without much upset to Fritzi.
Fritzi moved into the group home 35 years ago and managed to adjust well enough to enjoy life as much as she could. She was transported and attended “program” during the week at the place that she knew until she was old enough to be enrolled in a senior citizens’ program. Fritzi would not have lived as long as she did if this facility had not provided outstanding care. I remained the person they turned to for approval and consent. On a personal level, I would bring items that she enjoyed and wanted such as new clothes, CDs (she loved music), and news about whatever family we still had. My mother, a favorite of hers, would accompany me from time to time when I visited. And sometimes, my son, brother, or grandchildren would come with me. I always made sure to visit on her birthday and bring a big cake, cookies, candy, and soda, enough to share with all the others in the home. But the focus of her life was her daily activities including yearly vacations scheduled at the home. My visits and talks with the staff assured me that Fritzi was content.
Several years ago, I began to worry about her aging and the slow diminution of her physical and mental acuity and so I began planning for the final phase of her life. I tried my best to consider what her parents would have wanted and concluded that in the end they would not want extraordinary care but would want her to be kept comfortable and without pain. And so I left such instructions at the facility. As for her demise, I wanted to honor not just her but also each of her parents. My uncle was an atheist, wanted to be cremated and have his ashes thrown in the Pacific Ocean. My aunt wanted a Jewish funeral and to be interred wherever my parents would be. I, therefore, entered into a Pre-Plan with an appropriate funeral director and gave instruction that in the event she died, she would be cremated and her ashes buried with her mother and where all of our family is buried. I was never certain that this plan would work but just a few weeks ago, yes, in the middle of the pandemic, Fritzi was hospitalized with life-threatening issues. I reiterated my order of palliative care and she died peacefully a few days later. Because of COVID, I was unable to be with her during her hospitalization, but even then, a staff member visited every day to let her know that she was not alone. The funeral director followed my instructions and her ashes were interred as I had directed. Her death was sad but merciful. Her physical condition had visibly deteriorated in the last year but she did live to be almost 86. My son attended the interment while my grandson recited prayers. Her end was dignified, calm, and appropriate. I am gratified that I was able to fulfill the promise made to my aunt so many decades ago. But none of this would have been accomplished without forward planning when each step could be considered without the emotional stress usually associated with these difficult decisions. Her life and the care and the pleasures she was able to enjoy should serve as a model for all persons in need. We need to be thoughtful and plan in advance. And not just family should take note but as well, our social services and community resources need to come up to the level I was able to find for her.
To sum up, I’ve learned a few simple tips that may help in the planning stage:
-Do not judge the quality of life of a person with a developmental and/or physical disability by your standards. A facility dedicated to people of similar needs can provide excellent care, therapy, and perhaps the most important, company. Research the best match.
-For persons losing their mental or physical capacity, start thinking about what may be the near future and where that person would best fit in. People who are by nature gregarious may benefit from living in an assisted facility that also has step-up resources as capacity deteriorates. Visit and discuss and, if agreeable, make future plans.
-Think about the people you know who may be experts. It was friends and family who gave me the best advice and help. Don’t be shy about asking.
-Think ahead with the person if (s)he can about the inevitable end – death. And pre-plan. Don’t wait until your emotions interfere with making clear decisions.