I am the child of older parents and in young adulthood, I became their primary caregiver. My parents were kind, caring and wonderful people who always did their best.
My dad was diagnosed with cancer the year that I graduated from college. The doctors gave him a few months to live, but my always feisty mother told the doctors, “He will not die. I simply will not allow it!” Through the hands of G-d, medical science and the love and care of my mom, my dad lived eight more years.
Sadly, in her 80’s, my mother developed dementia which caused memory loss and macular degeneration that rendered her legally blind. She truly was a woman who “marched to the beat of her own drummer” her entire life. Mom was strong, kind and a leader in every respect of the word.She was a woman before her time and believed that women could do anything! She fought the best that she could, but her fleeting eyesight and memory took its toll on her body, but never on her untiring spirit. After much thought and many tears we placed mom in a nursing home. It was bittersweet since at first she did so well; entertaining the other residents and becoming a legend due to her wit and wisdom…her singing and dancing.. Always, spiritual, my Jewish mom sat in the Catholic Chapel of the nursing home praying to G-d in Yiddish. She said that “G-d hears all prayers of the heart.”
Mom developed an unusual rash that was difficult to diagnose at the facility. She was seen by a dermatologist.who ruled out much else and believed that the skin irritation may have been related to an allergy to one or more of her prescriptions. The doctor recommended “a gradual and conservative review of her medication” to see which one(s) may have been the cause. While we were unable to prove it; its our belief that soon after, the nursing home stopped all of her medicine “cold turkey” and she had a massive stroke.
My mom was in a coma for several days and when she awoke, she was paralyzed on one side. lost much of her speech and was unable to swallow. Again, faced with a life and death decision, we opted to have a feeding tube inserted in her stomach for nourishment . We moved her to a different nursing home hoping that she would receive compassionate care. Little did we know that our nightmare was just beginning.
Sadly, the second nursing home’s care was inhumane and brutal. The nurses and aides ignored her and I believe that she was physically abused. They disdained me because I visited every day and I asked too many questions. But instead of questioning them, I should have been screaming at the top of my lungs, “This is not right.” However, I like many others was intimidated by the medical system…a system who assured me that I was overreacting.
I visited her one evening a few weeks after her arrival there to find my mother weeping and her paralyzed foot swollen and black. A nurse looked at it and she said, “it was not serious and these things happen in people with strokes.” They refused to do much more. But, I did not feel comfortable and called an ambulance and had her taken to the hospital. We were told that she had a broken foot and the blood supply was limited. How does a paralyzed woman who cannot walk and barely move, break her foot? The hospital put a cast on her foot from her ankle to her calf and sent her back to the nursing home . Over the next few weeks she developed a cold and that soon became pneumonia. During this time, I asked if they were checking on her foot and was assured that they were. I asked every day and was assured every day that she was being monitored.
Several weeks later, I visited and saw her gasping for breath, her oxygen mask askew and she was running a fever of 104 degrees. I said she needed to be hospitalized and they again said it was not necessary. But, it did not seem right and I called 911 and had her taken to the hospital where they diagnosed her with aspiration pneumonia. While she was there, I asked about her foot and cast and told them that it had been on for eight weeks. They were shocked that it was on that long and when it was removed, I cannot begin to tell you the condition of her leg and foot. She had gangrene. Her feeding tube gave her sepsis and she went downhill from there and passed away after I signed the paperwork for only “humane care.” No more procedures, no more tests, no more hurt and no more pain.
After the mourning period, I sought answers from both nursing homes and received few. I later learned that the physician that had allegedly ordered all medications stopped (that led to her stroke) had either resigned or was asked to leave. I also learned that the second nursing home had no paperwork that my mother’s leg was even broken and thus it was never looked at for weeks, despite daily assurances that it was. And the medical director at one of the nursing home’s actually asked me, “Why are you coming to us now? I told him, “I tried my best and no one listened while my mother was alive!”
I consulted with several attorneys who told me that a case would be protracted and difficult to prove. She was after all a woman in her early 90s and had other health issues. They said it was not worth the effort.
Respecting my families wishes I dropped any further legal action since it was just too painful for us all. However, I filed a complaint with the State Department of Health, Division of Nursing Homes. After their review, they were only able to violate the second nursing home for a lack of adequate paperwork and for moving her from one room to another without prior notice. The real charges and allegations of neglect and abuse could not be proven. The paperwork had been modified and some of it disappeared. The case was closed and the statute of limitations under law has passed.
But, the guilt that I feel has not passed. I ask myself even today why I did not do more at that time? I did try…In fact, I tried my best and my questions and observations were ignored. I am a quiet person by nature and abhor confrontations. As such, perhaps I did not scream as loud as I should. Would it have saved my mother’s life? No one can say. But, I do believe that it would have perhaps saved her from some of the pain she endured at the end of her life.
I cannot bring my mother back. But, I can save others from experiencing what I have. If something does not seem right; its not! Our own “gut instinct” is often the best indicator. I am still not an outspoken person, but I have learned that I need to use my voice to speak up more often. Its not easy for me; in fact its very difficult. I am a work in progress.
And, I have tried to use my sensitive and caring personality to benefit others, I have worked for the Assembly for the past twenty-eight years. Helping people is what I find the most satisfying. Its not the most glamorous job, there are no titles and I often work behind the scenes. Some may say that is a “burn out job”, but I believe its so important….To be able to help seniors secure food stamps, to assist a mother find services for her special needs child, to help a family receive the benefits they so need, to lower tax bills, and to ensure that those who need long term care are treated with care, dignity and respect is what its all about for me. I have also always loved politics, but what I love even more is what good and caring elected officials can do for their constituents.
By helping others – I in turn help myself. It has been said that everyone suffers some injustice in life,and what better motivation do we have than to help others.
If something does not seem right – its usually isn’t. We all need to find that inner voice and be heard. That takes courage..and I have learned that courage is not the absence of fear, but its what we can do to triumph over it.