NIGHTMARE: OLD, SICK AND INSTITUTIONALIZED, Pt. 3

Danger and deceit

The next day I met with the chief administrator, Rochelle, an overly friendly woman who appeared to bend over backwards to please, and Christine, the young admissions clerk, who thrust paper after paper in front of me to sign. A meeting with the social worker, not presently available, was imperative. Hoping that here too this would be a dependable friend, I eagerly arranged an appointment for the next day.

A smallish woman with a Russian accent, Ella was friendly enough but, when told of my plans to move my aunt became defensive, telling me that Gertrude would lose all benefits if I removed her without their permission, a fact I knew to be untrue. It was all too apparent that our goals were not compatible.

The system dictates that Medicare pay for the first twenty days of “rehabilitation”. Beyond that, a copayment of $96 is required for the next eighty days, covered by Gertrude’s supplemental insurance policy. The patient then pays all expenses, here billed at $220 per day, until resources are exhausted and Medicaid takes over. With Medicaid payments substantially lower, a patient with resources is an asset to the facility; my aunt a coveted commodity.

A profitable enterprise, new investors had recently taken over and major expansion was underway. Originally established to serve a sectarian community, with the advent of government subsidies, it had become multicultural with a patient population representing virtually every ethnicity in Brooklyn, many remanded from hospitals as indigents. Most appeared to be in poor condition; barely cognizant, some docile, others acting out childishly. Striking me immediately was that almost all were in wheelchairs, others using walkers; none walking unaided.

The rehabilitation program consisted of a brief period each day in the “gym” on the sixth floor, a freshly painted room with a few exercise machines, presented as “our Jack LaLanne”. During the day, there were people in white coats milling about, some pushing wheelchairs. Like all others on the staff, they were extremely eager to describe the wonderful facilities and treatment. Incomprehensible was how those few meager minutes a day constituted rehabilitation when patients were otherwise confined to wheelchairs. When questioned, I was told it was for their own safety.

Drugged existence

Without examining her, the hospital’s policy of containment was simply carried forth. Gertrude was dosed with Haldol, remanded to a wheelchair and put in a diaper. Refusing to believe that her physical condition had deteriorated so rapidly, I didn’t hesitate to see for myself. Together in her room, alone except for her semiconscious, moaning roommate, she made an effort to rise. Asked whether she had to use the bathroom, she nodded affirmatively so I helped her out of the chair. But instead of heading there, she started squatting over the nearby trashcan. Grasping her to rush toward the bathroom, she had already begun to urinate, dribbling through her diaper, leaving a path across the floor. Once in, she was unable to straighten up or turn around to sit; her sense of balance gone. I called for help. It wasn’t difficult to recognize the degree of disorientation and lack of equilibrium as drug induced.

A bit of research revealed how dangerous Haldol could be, especially for geriatrics. I demanded the drug be immediately discontinued and she be examined by a psychiatrist and a physician. A change of room was also requested, away from the moaner to a more tranquil environment. Since the psychiatrist was only there for a few hours two days a week, it would be a couple of more days before they would arrange a visit. A physician too was only there on a limited basis.

On January 28, the psychiatrist finally made a brief call. Several attempts to reach her the next day and assured that Gertrude had been taken off the drug was all I was told. The physician found a slight urinary tract infection but, beyond that, was also not very enlightening. It was a few more days and a bit of hesitation before her room was changed, after which they complimented themselves on the effort.

Does anyone here tell the truth?

It seemed as if the more I questioned, the more the staff, from the lowliest attendant to the chief administrator, attempted to impress upon me what a wonderful job was being done. And every time the doctor saw me, he’d assure me that this was not a prison, I could check my aunt out at any time. But these performances were extremely transparent. Gertrude did not look good. This once feisty woman, forced to spend her days in a wheelchair, wearing a diaper, seemed  defeated, her spirit broken. A person of her age and condition, if not allowed to function, tends to forget. It had been some time since I’d seen her on her feet and was receiving disparate reports from staff members; none positive.

Fearing for my aunt’s well being, I visited as often as possible but there was no way of knowing what was occurring otherwise. Patients were generally found in one of the day rooms: a spacious one on the lobby floor, where the wheelchairs were lined up in rows, or a cramped, dingy one on their own level where they were confined behind long tables so that once placed it was only with extreme difficulty they could be moved. Both had TV’s and, occasionally, simple activities were conducted to which few, if any, paid attention.

On one occasion, I observed a woman rise from her wheelchair. An attendant demanded harshly that she sit and continued, louder and more intimidating, until the poor woman obeyed. If she had to go to the toilet, she would surely have been determined incontinent, a judgment recorded as gospel; victimized as Gertrude had been at the hospital.

Often, as I entered or left through the lobby I’d observe Rochelle taking prospective clients on guided tours, extolling the wonders of their facilities and the virtues of their programs; the virtual paradise awaiting their loved ones, blind to the reality that they would be condemning them to spend their final years in a living hell.

Almost two weeks after admission, with the coverage period lapsing, I was told there would be a formal evaluation. All professionals responsible for Gertrude would report. The greatest concerns were her ability to walk and her continence, the primary factors determining whether she could function with only partial care. Yet again, no straight answers were provided. She could walk but still had problems; she was somewhat continent but still having accidents. I left with no more information than before. But for Gertrude’s wellbeing, as well as my sanity, a permanent placement had to be made soon.

Prying her from their grasp

Still determined to place her in the less intrusive assisted living facility, I requested that Ella call the facility in New Jersey. Hoping to reverse their previous decision, I took the phone and pleaded with Barbara, the chief administrator, to reconsider, insisting that the existing reports were biased. She agreed to grant an interview the following week, stating however that, if accepted, it would be on the highest level of care (the most extreme cases, needing constant care, being regularly evaluated for transfer to a more comprehensive facility and, of course, much more costly).

Arrangements were made to have Gertrude ready immediately after lunch on the day of the interview. Upon my arrival, an aide was almost finished helping her dress, diaper and all. Wheeled to the lobby and signed out for the day, she waited as I brought the car around. Refusing help, Gertrude practically leaped out of the wheelchair, down the steps to the car, the first time I had seen her on her feet in about a month. Although her gait was a bit stiff, considering what she had been forced to endure, it was a wonder to behold. There was hope.       

Like a newly released prisoner, Gertrude was in high spirits, reading aloud every sign and commenting non‑stop on the scenery. Whereas her constant chatter would normally be an unwelcome distraction, nothing could dampen my mood on that bright, sunny February day. We picked up my sister and arrived shortly before the appointed time to a warm greeting from staff members who took us on a brief tour.

Here residents are indulged and pampered; the facility arranged like a hotel, each with a private room; everything freshly painted in bright, tasteful colors with public areas throughout. Residents are monitored and prevented from leaving the facility alone but are otherwise free to do as they please. In addition to the many small lounges, most with TV’s, there is a large public area with refreshments available twenty‑four hours, a library, salon and plenty of outdoor space.

The interview was conducted by Darlene, the head nurse, extremely personable with obvious geriatric experience. Held in a small lounge with us present, it was informal and friendly. Gertrude, on her best behavior, to the astonishment of Darlene and Barbara, other than a little stiffness, displayed no ill effects of her ordeal. Arrangements could be made for admission…and on the base level of care!

Free at last

On the ride back, Gertrude was excited and full of questions, the euphoria ending upon our return to the home. Knowing that this would be temporary helped to ease the pain but when forced back into the wheelchair and rolled through the gloomy corridor to her room, it served to demean the feeling of elation. Relating how well she was doing on her feet only evoked the usual admonition, “This is for her own safety“.  But for the first time, on my short drive home I was able to smile.

Preparation for the move took a little over a week. As requested, my sister and I gathered enough furniture and clothes to get started and arranged for a physical examination upon our arrival. Her former care givers were not trusted, their records useless. On February 21 I removed Gertrude from the institution. Upon entering the car for our trip to the promised land, I returned her pocketbook and welcomed her back to the world. Maybe not the person she once was, she still had the capacity to live life; something denied her for almost six weeks. It had seemed an eternity but the institutional nightmare was over.

This did not end the ordeal; it never does. As anyone who has experienced the mental degradation of a loved one is aware, it is ongoing; over only when the inevitable occurs. Meanwhile, Gertrude’s possessions and finances had to be dealt with and her bills regularly paid. As a final farewell from the nursing home, I received a call a couple of weeks later to inform me that my aunt’s social security check had been diverted to them. Apparently, anticipating that despite my repeated insistence otherwise she would be remaining there, they had submitted the forms. Once done, it couldn’t be reversed through the Social Security Administration without a huge hassle; a fitting good‑bye.

Now settled in her new home, Gertrude is alive again; as feisty as ever. The dementia slowly progresses but the fears diminished. She even learned to dial my number, with the additional long distance digits! I can now be at ease, knowing that she is under proper care. It may not really be paradise but it’s surely a long way from the hellish abyss in which she had been immersed.  

Tormented in a living nightmare

Gertrude is fortunate, having a caring family and ample assets, for so many who have spent their lives struggling to work and raise families, impaired but still able, find themselves trapped. The most atrocious of crimes in dealing with memory impaired elderly is that few are willing to acknowledge their emotional existence, fewer still their emotional wellbeing. Without the ability to express their feelings, it is far too simple to ignore them altogether and neglect the abuse so casually meted out. When overwhelmed in dealing with a loved one, it is easy for many to believe that the institutions are doing the right thing, alleviating their burdens of guilt and care. Accordingly, it is easy to believe that the old and infirm are being done the ultimate service by maintaining their lives while disregarding their capacity to live them.

Many of the methods practiced by these institutions in dealing with mentally impaired seniors are standard procedure throughout much of the health care industry. Responsibilities to stockholders too often supplant those to patients. Cost effectiveness takes precedence over the crying needs for expansion of facilities and personnel.

So, as we march forward into the new millennium, ever growing legions of elderly souls; our parents, our grandparents; are being condemned to spend their waning years tormented within a living nightmare.

1999