The horror of terrorist attacks on September ll, 2001, rings fresh in the minds of the citizens of our nation. The term "axis of evil" has been used to characterize this vicious attack coming from without our borders and victimizing the innocent within our nation. There is an "axis of evil" that operates within our borders and victimizes truly innocent and helpless individuals. This internal "axis of evil" operates without restraint largely because of the lack of concern on the part of those who have not as yet become victims. 

Our mothers, Lilah Barnhart, age 101, and Helen Adams, age 99, were victims along with thousands of others of the "axis of evil" operating today in a system that we call "Long Term Healthcare". To our credit as a nation, we have recognized that the ravages of age, disease or accident can render people incapable of caring for themselves. As a nation, through our laws, we have recognized the moral obligation of caring for those who cannot care for themselves. In spite of the fact that scores of individuals have dedicated themselves, both in and out of government, to providing care for these victims, the system that has developed has become corrupted. 

When our mothers could no longer care for themselves, we moved them into our home and cared for them for five years. When the ravages of Alzheimer's and physical deterioration made it impossible for us to continue caring for them, it became necessary to place them in Nursing Homes. 

In short order, circumstances in both nursing homes proved the term "nursing home" to be an oxymoron.  During the five years that Lilah was at Brownsburg Health Care Center and Helen was at Danville Regional Rehabilitation Center, an Extendicare facility, they suffered from the failure to provide adequate nutrition and fluids, inadequate supervision to prevent falls, failure to provide prescribed ostomy care, falsification of records, and inadequate staffing to provide for basic needs. 

On two occasions when neglect or abuse resulted in bodily injury, Adult Protective Services refused to investigate when we requested their help. One of these cases was turned over to the Board of Health and eventually resulted in citations, but produced no improvement in care. In the second case, we filed a formal complaint including pictures of the injuries and other documentation. The Board of Health stated that the complaint was partially verified, but unsubstantiated.  We were chastised by the Board of Health inspector for taking pictures of the injuries. Under the Freedom of Information Act we obtained copies of the inspector's original notes.  From those notes it is very obvious that the whole inspection was in error and a farce. There was no interview with the principals involved. Statements provided by the Director of Nursing contained contradictions. The inspector either ignored the contradictions or failed to read these documents. From our own investigation and information confidentially volunteered by nursing home personnel, we determined that another resident probably inflicted the injuries after Lilah and her roommate were placed in the wrong beds. In addition, Lilah's physical symptoms suggested that improper medication had been given. There is no record that this complaint was ever investigated. 

Our inquiry with law enforcement agencies indicates that this kind of neglect or abuse would be readily investigated by Adult Protective Services and prosecuted if it took place in an individual's home.

The abuse or neglect of children and/or failure to report the same is considered to be a felony. The neglect or abuse of a nursing home resident in many cases is ignored or treated as a misdemeanor and not prosecuted. It is a disgrace that these cases are widespread. 

During Lilah's first nine months at the Brownsburg facility, she suffered many falls resulting in bruising and lacerations. Four of these falls resulted in serious fractures.  Following a compression fracture of the spine, Lilah was no longer ambulatory as she could only support 50% of her weight. Our pleas to the Nursing Home Administrator and the Director of Nursing to provide either adequate supervision or use of a lap-belt restraint were ignored until another fall produced a broken wrist. This period of time was one of great physical pain and suffering for Lilah, and great emotional pain and feelings of helplessness and frustration for us that almost defies description. 

Our concept that government regulatory agencies would hold Long Term Care Corporations responsible for providing reasonable and prudent care for their residents was shattered by Lilah's fourth serious fracture, a fracture of the pelvis. 

This occurred at 2:00 a.m. on August 19, 1997, when Lilah was placed on the commode in the bathroom and left unattended while the aide went to check on a disturbance down the hall. There was 1 nurse and 1 aide on duty to care for 43 patients. This was the usual staff-to-patient ratio on the night shift. Existing facility documentation verified that Lilah's Alzheimer's disease had progressed to the stage that she did not realize that she could not stand alone. Only after great difficulty were we permitted to see the written record concerning this injury. We found that the written record and what we had been told verbally were contradictory. Having exhausted appeals to the nursing home administration, we appealed to Adult Protective Services.  They refused to investigate and referred our complaint to the Board of Health. The Board of Health eventually investigated and placed total responsibility for the fall on the aide. Thus the Corporation was free of responsibility for providing necessary and prudent care. 

On February 3, 2001, failure to give reasonable and prudent care manifested itself again by serious, unexplained injuries to Lilah. Specifically, we noted a severely bruised left eye, a swollen and enflamed right cheek, and her breathing was irregular, which was not normal for her. And she was totally unresponsive to touch, sound and light. A CNA found this condition when she came on duty at 7:00 a.m. We discovered these injuries on a routine visit at 9:45 a.m. that morning, but had not been notified by the nursing home. These injuries were disturbing, as Lilah was totally dependent for all care. The nature of these injuries suggested abuse. Once again we reported this to Adult Protective Services and once again they refused to investigate. As a result, we filed a detailed complaint with the Board of Health. The investigation was a farce. Information given to us later by two CNAs, and our own observation, leaves little doubt that Lilah's roommate inflicted the injuries, having been agitated by being placed in Lilah's bed. The roommate also suffered from dementia and displayed periods of extreme agitation. 

Upon being notified on June 14, 2001 by the Medical Practitioner that Lilah's condition was becoming critical due to dehydration, we began to monitor the situation several times a day. We discovered that fluids and food were not being given regularly even though we found that she would take them when offered.  Following our verbal and written complaint to the Director of Nursing, procedures were changed to insure that Lilah would be offered fluids and food on a regular basis. Her condition improved. Eight months later, Lilah lost the ability to swallow and died shortly after reaching the age of 101. 

With the exception of a few, there were some excellent nurses and aides at both facilities, often working under impossible conditions imposed by the corporate and/or administrative structure. 

Helen Adams at age 95 was ambulatory with a walker and very alert mentally, but had many physical problems. These included severe osteoporosis of the spine, congestive heart failure, a urostomy of twenty years due to cancer of the bladder, mild hypoglycemia, and digestive problems with a history of blockage of the intestines resulting from adhesions. While Helen had many physical problems, we had controlled these by diet, medication and proper care of the urostomy. Her stamina varied from day to day and needed to be monitored closely. She was able to care for some of her physical needs, but often required assistance. 

Helen's medical history and care requirements were submitted in writing to the Nursing Home administration prior to and upon her being admitted to Danville Regional Rehabilitation Center. Administrative personnel assured us that there would be no problem in meeting the requirements as stated in the document submitted. 

Within days after Helen was admitted, there was a multitude of problems with diet, care of the urostomy, administration of medication, and assistance with personal care when needed. There were repeated failures to meet dietary requirements as to the kinds of food offered, length of time between meals, and maintaining proper food temperatures. On several occasions we observed that there was nothing on her tray that was approved for her diet, and we went to a restaurant and purchased a meal for her. Conferences with administrative personnel and citations by the Board of Health produced only transient results. 

Proper care of the urostomy was a continual problem. There was often failure to observe proper protocols in this care. Repeatedly we found appliances to be improperly secured and not changed according to the specified schedule. In spite of many conferences with administrative personnel and formal complaints to the Board of Health resulting in subsequent citations for violations, the problems continued. On numerous occasions over an extended period of time, documentation of the urostomy care was erroneous. Board of Health complaint survey records confirmed that other residents were also receiving deficient care in this area. 

Understaffing caused many of the serious deficiencies that we noted in Helen's care. On several occasions, particularly on weekends, a day nurse would come on duty to find that she had 68 patients with only 2 aides. This excellent nurse became obviously stressed in trying to administer medications to her patients within an acceptable time limit. Near the end of March, 2002, we realized that Helen's condition was deteriorating and suggested to the nurse that she needed a chest x-ray. The x-ray revealed that fluid was accumulating on the lungs, which developed into a serious case of pneumonia. Shortly after this, we received calls from the night nurse asking us to come to the nursing home because she did not have time to care for Helen's needs. During 2 weeks of 24-hour vigils, we found that the usual staffing at night was 1 nurse and 2 aides for 68 patients. During this time there were 3 patients in critical condition and at least 2 others who were in serious condition. 

By insinuation, the Medical Director gave the strongest possible condemnation of the staffing condition during a consultation. After Helen had nearly completed the first round of antibiotics and was not responding, we requested a consultation with the Medical Director. His first statement in that consultation was, "Your mother would not be alive today if the family had not been here to give her the necessary fluids". She lived 18 days after this. 

We would be remiss if we were to leave the impression that all of our problems resulted from inferior work on the part of the nurses and the aides. To be sure, there were a few whose quality of work left a great deal to be desired, but through the years we grew to appreciate the dedication, compassion, and professionalism of many of the personnel. Our complaint over and over has been with corporate structures and administrations that place their personnel in impossible situations. 

If our government, both State and Federal, accepts the responsibility of financing long term health care for those who cannot provide for themselves, then it has a responsibility of demanding quality care for the finances it provides. The "axis of evil" in health care is given free reign when the government chooses to be oblivious to the slight-of-hand tricks that divert tax dollars from the care of patients to corporate coffers and corporate personnel. Our system of inspections at times identifies abuse and neglect then assesses fines and rescinds the same. This is a license to neglect and abuse the helpless.