The minds of memory-impaired seniors may not be clear any longer but they are still capable of feeling.

NIGHTMARE: OLD, SICK AND INSTITUTIONALIZED, Pt. 1

Often nowadays, we experience or hear of the heartbreak dealing with a loved one afflicted with Alzheimer’s or other dementia related condition. More and more common today when people are living ever longer lives; formerly considered old age senility, a mark of advanced years, and left to run its fatal course. Now a constantly growing concern as modern medicine overcomes those demons that, not long ago, killed most people before this debilitating disease could strike. Accounts tell of those once strong and vital, friends and family watching helplessly as they degenerate into hollow shells of the people they were. But compounding the horror is the attitude of so many we rely on and the callous treatment of those we hold so dear. This is my experience dealing with a loved one and our journey through the system established to care for those unable to so for themselves.

A life lived

A few years ago, my parents moved to a retirement community in New Jersey leaving me and my Aunt Gertrude the last of the family in Brooklyn where once the entire clan had thrived. Despite our efforts to convince her, she adamantly refused to leave her home in the Bensonhurst neighborhood where her entire life had been centered, thus leaving it to me to look after her.

For her generation, Gertrude had led a somewhat nontraditional life. Marrying late, the union was brief, ending in divorce, after which she moved back into her mother’s house with her infant son. But she had a profession. Having trained to enter one of the few areas commonly open to women, she became a teacher during the mean years of the Great Depression and struggled to work her way into a regular classroom position.

In the 1970’s her son died unexpectedly in his early twenties, followed shortly by her mother. The house was sold and a move made to an apartment just blocks away. A few years later, after many years of service, she retired, having earned an adequate pension. Gertrude had led a very full life, traveling extensively as well as taking advantage of the cultural opportunities so abundant in New York. Age however had slowed her down and her once large number of friends had dwindled, limiting activities to the area immediately surrounding her home and the occasional family event for which she would accompany me to New Jersey.

Dementia sets in

Now well into her eighties, she was becoming forgetful. With my father already afflicted and their mother having suffered from the disease, it was evident that this was the beginning of a sad, unpredictable regression. A fiercely proud and independent woman, assistance was accepted only at her choosing, becoming more defensive as her memory and abilities continued to deteriorate.

Denying her infirmities, she avoided things beyond her capabilities, never asking for help except in matters of importance and later disclaiming the need (“She [a friend] wanted to help so, to make her happy, I let her.”). Any suggestion of her incapacity would often provoke a temper tantrum; you never forgot who was in control. It took all the patience I could muster when she refused to cooperate on matters concerning her wellbeing, particular phrases sending me to the brink: “I’ve been doing that all my life” (at any hint she couldn’t perform a simple task) and “You don’t understand” (virtually any time we weren’t in agreement). It was like dealing with an obstinate three year old.

The hospital

In December 1997 Gertrude fell in her apartment. Her close friend and neighbor, Ruth, receiving no response, used her key to find her laying on the floor, awake but confused. Refusing aid, I was summoned, called 911 and had her taken to the emergency room at a major hospital, considered the best facility available. After several hours waiting for testing and assessment, it was a relief to find nothing broken but, noting her dementia, she was admitted for evaluation.

A few days later, despite the hospital’s wishes to hold her for further diagnosis, her insurance plan refused and she was released, but not before it was determined that full time supervision, at home or in a facility, was essential; a judgment made on the basis of an incredibly brief, extremely superficial examination. Present for the scant few minutes he spent with her, it was obvious that the psychologist completely misinterpreted her ability to comprehend. Yet I welcomed the opportunity to get the help that was becoming ever more urgent as the debilitating disease continued to eat at her senses.

The only real assistance at the hospital came from Barbara, the social worker assigned to the case; the only one who could be relied upon; the only one who seemed to care. It was she who contacted the agency to obtain the services of a woman to move in and provide care. This did not sit too well with Gertrude but, despite her resistance, we convinced her that she would not be allowed to go home alone. Jenny met us at the hospital and, driving them home, I could feel the weight lifted from my shoulders. Despite herself, Gertrude would have the help so vital to her wellbeing.

Back home the storm brews

Jenny was wonderful, creating order in the apartment and providing diligent care. Gertrude though, had interpreted the arrangement as temporary and resented it as an invasion of her privacy. After about a week she began insisting Jenny leave. The anger mounted, temper tantrums growing more frequent and violent. About three weeks and she lost it altogether, becoming physically abusive. At that, despite my efforts to convince her otherwise, the besieged woman could do nothing but comply with my aunt’s wishes. It had been nothing more than a temporary reprieve. 

Completely lost, I contacted everyone who might provide a solution: lawyers, doctors, social workers; the answers were the same: have a judge certify her incompetent or await a major crisis. Despite my concerns that she wasn’t caring for herself or eating properly, she still seemed to manage on a minimal level. And although never admitting her diminished capacity, she seemed aware not to go beyond her limitations. Forcing the issue appearing more harmful, the only option was to help where possible while anticipating the inevitable, hoping it wouldn’t involve harm to herself or others.

As her downhill spiral continued, paranoia began to dominate her thoughts and actions. A common symptom, enhanced by a lifetime alone and general lack of trust, she began obsessing about her neighbors. They were conspiring against her; first on one side, then the other. Now she was surrounded by enemies entering her apartment to rob her and plotting to kill her. Constantly misplacing things confirmed her fears. Any attempt to persuade her otherwise met with a harsh, “You don’t understand!”

Despite Gertrude’s obstinacy, viable options had to be determined, hoping one could be implemented. In New Jersey, my mother had discovered supervised assisted living facilities that accepted seniors suffering mental impairment. The best suited for us was close to my parents and sister; Gertrude would never be isolated from loved ones. But she would have to be accepted and agree to the move.

Race against time

It was a race with time the enemy. Gertrude’s behavior had become psychotic, fear increasingly governing her actions. Losing track of time and rarely sleeping through the night, Ruth was receiving phone calls at all hours, as was I. Terrified by her conjured illusions, she was alternately barricading herself inside with furniture or roaming through the halls ringing doorbells of the few she felt she could trust; all elderly, frightened by her late night escapades and concerned about her rapidly degenerating condition. Ruth was now calling me regularly, more frantically each time.

Existing largely within her paranoid universe, there were occasional moments of lucidity. One day I mentioned, as I often had, that I was investigating a nice place for her to live near the family. Whereas the mere hint of moving had always provoked a hostile response, to my astonishment she actually seemed touched by the thought. But could the rapidly encompassing psychosis be controlled long enough to avoid being institutionalized before arrangements made?

Sadly, this was a race that could not be won. Her mental state had declined too far, her outbursts increasingly more turbulent; with fewer rational moments she was almost completely out of control. On Thursday, January 14, 1999 the situation reached critical. When the call came from Ruth on that fateful morning, I knew the time had come; the dreaded crisis, the time to act.

Gertrude had already called at 2 A.M. crying that the neighbors were gathering to kill her. Calming her down a bit, I tried to persuade her to go to bed, aware that this couldn’t last. Not having heard from her though, the faint hope remained that we could still buy more time; wishful thinking. Apparently, I had only convinced her that I didn’t believe her wild machinations so, at some point during the wee hours, she started wandering through the building, Ruth finding her standing by her door around breakfast time in an extremely disoriented state. Instead of keys, she carried a spoon. She could remain alone no longer.