Dardee's Forever Home
It was January of 2020 when a man in a white coat told us that my mom was rare amongst those who call this world home. Not because she lovingly inspired kids for forty years in the public school system and lived to tell about it. Or because she had endured unspeakable violence and hardships in a poor Alabama town and never stopped seeing the best in people. No, she was unique because of three letters, P.C.A. A rare form of what is already considered one of the more frightening ways to die, Alzheimers disease.
Dardee is among a small percentage ever diagnosed with Posterior Cortical Atrophy. A strange condition which causes the brain to misinterpret what the eyes see like a shifting psychedelic landscape. Words in a book drift off the page and swirl like a dandelion swept up by a breeze. The faces of family contort and shift as her consciousness struggles to make sense of what her eyes are seeing. A unique kind of blindness that doesn’t make the world go dark, but creates a reality based on its best guess from past experience.
For 39 years Dardee taught in the public school system and was beloved by all. Now when something crosses her path she often mistakes it for a kid. On walks around the neighborhood a fire hydrant can appear as a child holding up its arms wishing to be held. You might’ve experienced a similar phenomenon growing up when a pile of laundry in a chair looks like a monster if you’d been watching a scary movie. Likewise, when Dardee is scared, her world transforms into the darkest moments of her conscious life. A brutal purgatory that requires all our efforts to keep her calm and comforted as she relives childhood atrocities in a waking nightmare.
While some conditions require a wheelchair or a hearing aid, Dardee requires a companion. Someone to help make sense of her surroundings, keep her calm, distract her with stories or music, a guiding hand to walk without running into a wall or tripping over an object she couldn’t see, an assistant to dress and bathe. Even eating and drinking now require coaching. We must describe what objects to chew, what a straw is to drink and when to swallow.
As her primary caretaker for the last four years, I’ve been able to adapt to her changing needs. But suddenly last month, Dardee’s mind and body were ravaged by a severe reaction to an antibiotic that sent her tumbling from a manageable Stage 5 to a horrifying Stage 7. Days before she’d walked three miles and could spit a joke, then suddenly was an infant; muscles shriveled, movements jerked and cries heard throughout the house as she called out for her “Mama”.
Since then I’ve slept beside her, needing to catch her the moment she wakes in order to help guide her to and from the bathroom. Her eyes, so confused by what they see, remain closed, shuffling blindly. Forced to rely on touch and the ability to make sense of the words I use to describe where to go or what to do.
So now we face an impossible choice. There are no “facilities” capable of caring for the unique needs Dardee requires to keep her safe or adequately maintain her quality of life. She requires someone by her side 24 hours a day. Her neurologist warned “Facilities, even those labeled as ‘Memory Care’ are not well suited to handle individual differences. Dardee was so young when she developed symptoms which means her experience will be more atypical. The facts are clear: you can’t treat Alzheimers as this monolithic entity. And PCA can be particularly challenging because it’s 1) an uncommon presentation of the disease 2) we don’t have great experience and knowledge to adjust.” For most people, understanding your mother’s unique difficulties is “a hard thing to comprehend.”
The psychological terrors and real world dangers she is facing are just too horrifying to endure alone and over-drugged at a facility. But the current rate for in-home help range from $20-25 hour, and we, like most families, don’t have the means to take on full-time employees. Pulling all the stops, I’ve been able to secure help at $18 per hour for now. But by my estimation they currently hold THE most important job in the world and want to up that rate as soon as we can afford to do so.
Our goal is to raise enough money to cover 24hr care and attendance to keep Dardee in her home for the next year: 218,400k. Anything over that will go to updating the grounds to be more accessible, safe and stimulating for her.
Before my father died a decade ago, he told me he wanted our house to be “Dardee’s “forever home.” Surrounded by three crosses, he built a rock fountain that their grandchildren would one day be baptized in. These are the peaceful grounds I’d like my mother to spend her last days as she transitions to her heavenly form. Not just surrounded by crosses, but by family and friends regardless of whether she recognizes us or not. God promises a peace that passes understanding and I believe this place will do just that.
So if you’d like to join us on this journey to help ease Dardee into eternity, I hope you’ll consider contributing in whatever way you can. Already we raised the money to buy and install cushioned flooring throughout the house to protect her from her number one threat: falling. A lifesaving measure that was put to the test countless times these last few weeks as her abilities deteriorated. It’s my hope to share these and other ideas I’ve learned with the courageous families beginning their battles with this ruthless reality.
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