I just returned from my mother’s grave today. I cleaned the winter debris from her grave and honored her with a single red rose laid at her headstone. It was her favorite flower. I now have to wonder now if she knows? Do you have a mother, father, sister, brother, aunt, uncle or grandparent in a US nursing home ? Are you a committed caregiver and advocate for your infirm, frail, sick, elderly or disabled relative?  Are you aware of what they are experiencing on a day to day basis? Then read on.

As many of you may know this also National Nursing Home Week. While I find that these two occasions of special observance contradict one another in the most ironic way, it is the most appropriate time to share the story of my mother’s suffering and death, in a rogue Michigan nursing home and hospice. My mother’s death may have been inevitable, but her suffering was barbaric. The nursing home care was tolerable and on occasion “acceptable” until it was purchased by new owners late spring-summer 2000. The quality of care plummeted from both the nursing home and hospice about the same time. I was so busy feeding , bathing, changing, laundering, housekeeping, monitoring medical needs and grooming my mother that I failed to see all of the warning signs. Nursing homes and hospices, as I found out much later, have a type of “joint operating” agreement. And some hospices, according to a report by the General Accounting Office of the US Government, make their profits from withholding services from terminal patients in nursing homes.

My mother emigrated to the United States from Central Europe in the late 1950’s, with a young daughter. She later became a US citizen. My mother was to serve as primary caregiver for a crippled brother. She did this for 16 years and raised the daughter without the luxury of the English language or a vehicle. She cooked, cleaned, gardened and shopped. She provided 24 hour nursing care, in the home, when her brother became terminal and comatose following a major stroke. He died peacefully in his own bed without a single bruise, malnutrition, dehydration nor bedsores.

My 89-year-old mother died on Thanksgiving Day, November 2000. In my opinion, experiences, and observations, she died as a combination result of advanced age, suspected but undiagnosed diagnosed cancer, dementia, severe depression, malnutrition, dehydration, general neglect and abuse.  Nurses notes document that my mother, 4 days before death, semi-comatose, moaning in pain had no ROXANOL pain medication. 7 days before death, a hospice CENA ripped her right calf open transferring her from bed to wheelchair, while semi-comatose. On the day of death, my mother had a necrotic hip-sacrum bedsore, stage 3, approximately 7 inches diameter, among several others.  In the last 8 months of her life, on most visits I found her saturated in either urine, feces or both.

My mother was a robust, feisty, independent, strong-willed and determined woman. This all changed in an instant following a fall at the nursing home, where 2 days later it was determined that she suffered a broken hip and required hip-replacement surgery. She was mad as “Hell”, but recovered to the point of being able to walk very short distances. But her appetite did not recover.  I was then given a choice of traditional cancer therapy or hospice. In shock and disbelief, I reached out to Citizen’s for Better Care, a Michigan advocacy group. They declined citing assisting with hospice is not part of their mandate. I subsequently chose a hospice with wide name recognition. It is the most regrettable decision I have ever made. My mother suffered tremendously with the hip fracture, surgery and struggle to walk again. I wanted her final months, weeks, days and hours to be as comfortable as humanly possible.  Quite to the contrary, her “caregivers” failed to spend the extended time required by a very ill individual to feed and drink, they failed to change bedsore dressings as required, they failed to provide adequate pain medication to a terminal patient, they failed to keep patient clean and dry to not exacerbate hip-sacrum bedsores, and failed to provide and apply other medical supplies.  As a legal guardian, primary caregiver and daughter, I attended care conferences, every 3 months, in an attempt to ensure proper medical and overall care. When care was appropriate, I responded by an appropriate letter of thanks, but I wrote several letters of complaint to the nursing home administrator and hospice regarding inadequate, substandard care. Not a single letter was ever responded to. These formal letters of complaint were always follow-ups to personal verbal ones. I was overwhelmed between the stress, anxiety and worry about my mother’s well-being and dealing with  the nursing home and hospice. I struggled with the mental anguish of should I move my mother to another facility and deal with the devils I did not know versus the devils I knew. Consequently, both the nursing home and hospice had ample opportunity to do as they wished, since I reside out-side US. This did not compromise my visits, which were at least weekly or more. So where did I go wrong?  I still had faith in the human spirit of 2 institutions, where profit, deceit and greed prevails.

I now know the hospice choice should never have been like what my mother experienced. Hospice is intended to be the compassionate medical and spiritual care for the terminally ill. The patient’s terminal disease is not treated, but it is my understanding that every human effort is to be made to ensure a pain free quality of life. In my opinion, with photographs to support this, the nursing home  failed to provide even the most basic humane care and the hospice was not far behind. Hospice RN failed to attend my dying mother. (Hospice does not provide on site support on National Holidays.)

After my mother’s death, I dealt with the shock, sorrow and grief. But, I soon realized that the circumstances of my mother’s suffering and death were not normal, as hospice explained. I then began my quest to find answers. Sadly, my efforts to find justice for my mother, over the past 2 years have proved to be a nightmare. I learned elder neglect and abuse is a disgraceful reality in the United States. Many of the agencies entrusted to monitor and regulate the care of the elderly and infirm, more oft than not, turn a blind eye. It is a fact that 1/3 of all US nursing homes have been cited for substandard care, neglect and/or abuse.

I have sent letters of complaint to 5 US Senators, 16 Mich. Congressman, 1 State Senator, 2 State Representatives, HCFA, US-GAO, US Attorney, Medicare Trust Solutions, Mich. Attorney General, Mich. Fraud Control Unit, Mich. Dept. of Health, (Nursing Homes, Nursing Home Administrator, Hospice &, Nursing Board divisions), Office of Inspector General, Centers for Medicare & Medicaid, Wayne County Sheriff’s Office, JCAHO, Mich. Peer Review Org., local and national hospice organizations. I have also sent letters of complaint to advocacy groups including Mich. LTC Ombudsman, Mich. Campaign for Quality Care, Citizens for Better Care, Elder Justice Coalition, Judicial Watch, and AARP. Thus, 2 years and approximately 150 letters later, what have I accomplished?  1 US Senator and 1 Mich. State Representative has responded in a sympathetic manner. The vast majority of offices, agencies (some of whom are former nursing home employees) and individuals listed above have ignored, declined or denied my complaints.

The State of Michigan has substantiated: 1) Hospice CENA negligence resulting in patient injury, 2) Inadequate Hospice CENA support and 3) No Volunteer Hospice to aid patient required by law.  The State of Michigan refused to investigate the nursing home, inaccurately citing statue of limitations. The State and Centers for Medicare & Medicaid has refused to accept any family proof of elder neglect, regarding allegations made. So, what does this mean? The nursing home has not been held accountable and the hospice needs only to provide a revised patient care plan.

It is my hope that this will encourage many of you to speak out for humane elder care. Even in difficult times, when you fight back, you assert your independence, win the occasional fight, and slow down the other side. Resistance represents a crucial step in keeping certain ideals alive.What we do or fail to do now will create the future standard of elder care that we will ultimately experience. Finally, we are building monuments to our mothers every day. The way we live determines how tall they will be.