Follow an Ohio Woman's Wishes for Medical Treatment Before It's Too Late!
Follow an Ohio Woman's Wishes for Medical Treatment Before It's Too Late!
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September 2021 Update: The legal guardian stated in text messages that he will allow treatments that this woman's neurologist recommends, suggesting he's re-enrolled his ward into neurology care after her family and caretaker negligently "allowed" her to be removed from them in 2018. Doctors can evaluate treatments and clinical trials that patients and legal guardians ASK them about, but it is unlikely any recommendations outside of their organization will be suggested. By signing this petition, you show that you support my mom's wishes for medical treatment for her disease, AND a direct e-mail will be sent to my mother's legal guardian, asking him to take the next step: ASK the neurology doctor to evaluate available treatments for FTD shown to be beneficial (brain stimulators, neuroprotective supplements, drugs that stimulate neuron production, etc.) and to evaluate FDA-regulated clinical trials for FTD in the United States that my mother is eligible for!
In 2014, my mother, a 55-year Youngstown resident and 35+ year local college English teacher, was diagnosed with FTD (frontotemporal dementia). At the time, there were no treatments or cures. My mom stated multiple times in person to me and my fiancé that she wanted "to try anything that might help, as long as it (wasn't) dangerous or harmful." This wish was NOT limited to cures only! No other close friends or family of my mom admit that they heard her treatment wishes, but none have ever denied it. In 2014, my mother enrolled at a Cleveland medical hospital for neurological monitoring and clinical trials, still having all her judgment, memory, etc.
By 2018, my mother, who had touched thousands of lives as a teacher and student progress counselor, had lost most of her life's memories, her judgment, and her ability to drive or care for herself because of her disease. In her degenerate state, she now deferred all her healthcare decisions to her boyfriend and other daughter, "because they're smart." She had tried two treatments through the hospital in Cleveland, salicylate and Aricept, which were discontinued because they didn't help; one caused migraines. She was even considered by her family to enter a stem cell clinical trial. But then, her boyfriend/caretaker, with the rest of the family's blessing, took her out of the neurology department's trials and monitoring and no longer considered ANY treatment for her.
In late 2020, NIH-published research stated that harmless brain stimulation via tDCS (transcranial direct current stimulation) actually improved cognition in FTD patients. I had learned about this treatment possibility years before; I bought my mom a brain stimulator for a Christmas gift in 2017, but her caretaker/boyfriend told me he had lost it a month later. CRISPR gene altering technology is curing genetic-caused diseases from sickle cell anemia to ALS (Lou Gehrig’s Disease). Currently, an FDA-approved clinical trial is recruiting patients for a one-injection treatment in Florida that hopes to stop the progression of FTD, but it is only for patients with certain genetic variants of the disease. My mom was likely tested for genetic variants in Cleveland, but no one in the family, nor her boyfriend/caretaker, will confirm or deny if she has these genetic variants. (9/2021 update: guardian finally looked into it and my mother was NOT tested for these). The research for FTD consistently reads that sooner intervention is better than later, yet inexplicably, her guardian is refusing to allow our mother to receive tDCS to try to improve her cognition.
The boyfriend/caretaker stated three years ago in a text message that my mother was having worsening sleep. The last couple of years, she has been grinding her teeth, and in March when I asked the boyfriend about this symptom and then the quality of her sleep, he stated that it was getting worse! When I asked about considering a harmless, non-habit forming sleep aid like CBD gummies, he said he had not considered giving her anything and referred me to another relative. This same man let her reuse a disposable N-95 mask during COVID for a year, witnessed by me, my partner and children when my mom accidentally wore her mask inside out and it was seen to be black with filth and having worn spots. Even after telling this to my mom's closest friends, other children, and family members, two of whom are nurses, they brushed it off and continue to support her caretaker/boyfriend.
A legal power of attorney was ambiguously named in my mom's 2014 will; the main agent was left blank (which was approved by an attorney!), and then my sister and I were named as alternate agents. This legal document was never enacted by my mom's caretaker/boyfriend and family, who shuffled responsibility for her medical decisions with each other for years. They never took any of my suggestions for harmless treatment possibilities (brain boosting oils and mushrooms, brain stimulators, etc.) into consideration. I had good faith in everyone and didn't want to cause any problems. But I was also not informed by my family of many things. A couple of years ago, I had brought up the need for our mother to have a legal guardian for medical decisions and I texted her decision makers about my applying in late 2020, but I had not yet researched it. In 2021, my brother applied for and was appointed legal guardianship and in charge of all our mother's medical decisions, with recommendation to all by her boyfriend/caretaker. I did not know I also had to apply to be considered, and no one told me.
My brother has stated, "I only want to make (my mother) comfortable.” This statement directly opposes what her wishes were. All our close family and friends knew my mother's wishes were also for her three children to have equal responsibility in her final affairs and all medical decisions. Sadly, these same people do not and have not helped honor her wishes. My brother is in charge of everything now. He cut off communication with me and our young children in 2018 after being angry about a possible clinical trial for our mom that I advocated, showing his hurtfulness and irrationality. And, he has no problem ignoring ALL the final wishes of our mother who, like anyone else, deserves to have such important wishes followed.
My mother was my best friend who I spent 15 mutually happy years of my adult life living with. She was literally a saintly woman who was righteous, moral, and compassionate. She never had a bad word to say about anyone except corrupt politicians and serious wrongdoers. The number of grateful students she taught and helped over the years is many. She cared for the environment, animals, people, and especially her family and friends. Her hobbies and interests included gardens and gardening, geology, state parks, fossils and minerals, social and environmental justice, reading, and more. She, nor I and many others, would EVER have expected to be in the current situation where her own family and boyfriend would deny her medical treatment, especially after giving her treatment! I have saved text messages spanning years that reiterate my mom's express wish for treatment, without any rebuttal. Also in these messages are several suggestions for harmless treatments that were always shrugged off by the people my mother trusted with her life.
My mother wanted to live, especially to be around for her five grandchildren. Please sign this petition to her legal guardian, her son, stating that you support her stated, evidenced wishes for reasonably safe, possible treatments for her disease. Tell him not to WAIT for neurologists to recommend something for her; ASK THEM to evaluate the treatments and clinical trials available right now to this patient!