It was December 28, 1998, when I first met Bernie. I received a call December 17,1998, from a young woman named Bonnie who seemed very distressed. She had received my name from the bank her dad, Bernie, patronized. Bonnie was wondering if I could help her father. As Bonnie began telling me her father’s story, I could hear the pain and concern in her voice. Her father had been hospitalized in October for a collapsed lung and then was sent to recuperate at a local nursing home.
Medicare benefits soon ran out and would no longer cover her father’s stay at the nursing home. Bernie and his family were informed he would be required to pay a daily rate of $100 or leave. Bernie and his family knew he was not in a position to pay for the services in the nursing home. He had only a matter of days to make other arrangements.
Bernie had six children who lived at least hundreds of miles away. Since it was around Thanksgiving, they were having a hard time making arrangements to get home to help. Bonnie had contacted the Department of Social Services, but according to their assessment, Bernie made too much money to receive assistance through the Medicaid program. Bernie’s income was between $1100 to $1200 a month, barely enough to live in his home, much less an alternative care setting. The family was fortunate to meet a county social worker who truly wanted to help, even if it could not be financially. She assisted the family in locating a number of alternative care homes in other counties that Bernie could afford. The family called the approximately 35 homes on the list the social worker gave them. The family located a group home in another county that had an opening and the admission to the home was under way.
The group home stay proved to be a deadly one. Bernie was discharged from the nursing home with a five-day supply of medication. The family was to obtain refills of Bernie’s medications from the Veteran’s Administration Medical Center in Madison. Bernie’s son from southern Wisconsin made the long trip to the group home to take his father to an upcoming appointment at the VAMC. The medications were reordered and taken to the pharmacy to be set up so that the staff in the group home could administer the medications to Bernie. Bernie’s son then had to return home to his family and his business.
Within a week of Bernie’s admission to the group home, he started to grow weaker and his lungs began to fill with fluid. Bernie brought it to the attention of the staff at the group home and even questioned whether he was getting his Lasix (water pill). The staff assured him he was, but he continued to wonder. A few more days passed and Bernie was feeling worse. He was barely able to walk, so the staff provided him a wheelchair to use until he was feeling better. Bernie continued to question if his Lasix was being given to him. The staff and manager of the home then reviewed his medications closer this time. They found that in fact he was not on a water pill.
When informed of this, Bernie was frightened and explained he had been on the water pill since his heart surgery in 1976. The certified nursing assistant working at the group home did an assessment, but other than the weakness noted no other symptoms. There appeared to be no edema palpated, no shortness of breath and his vital signs appeared normal. After much insistence from Bernie, the staff finally called the VAMC to report their findings and to ask for an appointment, which was made for December 17, 1998. With the assessment by the nursing home staff, the VAMC staff believed he would be fine until then. Bernie continued to decline over the next few days.
Following the appointment at the VAMC, Bernie was given a larger dose of Lasix to help pull off the extra fluid he was unable to metabolize out of his system. Because of the late hour, the medication was not picked up at the pharmacy in the VA. Bernie was returned to the group home. The group home was to receive the medication via next day mail.
Over the next two to three days, Bernie continued to grow weaker. He became very concerned that the Lasix was not working. He reported it to the staff but the staff did nothing. Christmas came and went and still Bernie’s condition did not improve. The evening of December 25, 1998, Bernie began to request that the staff take him to the hospital, but they did not.
The next day, Bernie continued to beg the staff to take him to the hospital and by 4 p.m. the staff did arrange for his transport to the hospital. He was admitted for fluid overload, a condition where the body becomes filled with fluid that the body cannot get rid of on its own. It was determined that Bernie had an extra 30 to 50 pounds of fluid circulating in his system, taxing his heart, lungs, kidneys and liver. Bernie remained hospitalized for two days and then because of Medicare guidelines, he was discharged. The group home refused to readmit him because of his decline in status, so he was sent home.
This is where I entered the picture. Bernie was discharged home on December 28, 1998, into a setting that, without my assistance, he would have surely died. Bernie received visits from me, a registered nurse certified in gerontology, twice a week and more as needed. I assisted with medication management and physical assessment and offered companionship. We also had a personal care aide visit weekly to assist with bathing and lunches from Meals on Wheels were delivered daily. Volunteers and a good friend did what they could to help him function.
Why did Bernie have so little in his time of need? Because he was in a situation that many older adults fall into: They have lower to middle incomes that do not qualify them for aid and have family members that are not readily available. A system that is aimed at helping the elderly and disabled failed Bernie, like so many others.
With permission of Bernie and his family, we filed a report with the Department of Health and Family Services, which began an immediate investigation. Though the investigation continues, preliminary reports find Bernie fell victim to a Veterans Administration doctor who made a bad decision to not continue his Lasix and a group home that admitted him inappropriately. The facility was not licensed to provide him the amount of care he required and the staff there was not trained to handle his medical condition.
Bernie died May 27, 1999, only a few short months after his ordeal began. The doctors say the incidence of fluid overload most likely caused Bernie’s heart to be overworked, causing permanent damage not only to his heart but to his lungs, liver and kidneys. This also is known as stage four congestive heart failure. Months were probably taken off Bernie’s life, as one physician informed us. Bernie was afraid and did not want to die alone, so he requested I stay with him. As he took his final breaths, I reflected on his story. As Bernie requested, I am sharing his story with you in an attempt to put a face to a story that is all too common to our elderly and their families.
When Bernie died, he was 79 years old, just 34 days short of his 80th birthday. He was a veteran who served in active duty as a Major in the U.S. Air Force during World War II. He served in the reserves for 30 years following the war. He was a father of six children, a grandfather of 13 children, a brother and a good friend to many people.
This is a true story, not unique to our elderly. Many more stories go untold and perhaps hidden from our society every day. Families struggle to find a way to tell their stories and to get help for their loved ones. Our systems that are in place to help our senior citizens and their families are not perfected and need further work to make them work in favor of our aging society. We can no longer afford to ignore these problems. We need to address the elder issues of abuse and neglect in all care settings. We, as a society can make a difference if we join together as one voice for a common cause,
QUALITY CARE FOR OUR ELDERLY AND DISABLED IN ALL SETTINGS.
Copyrighted by Sheri D. Fanning, RN,C
