When my father was diagnosed with dementia a few years ago I thought it was nothing more than a clinical term for his repetition of stories and forgetfulness. Little did I know how quickly the illness would progress and how destructive it would become to those of us that have taken care of him.
Nearly a year ago my father’s situation began to spiral out of control. Daily care for him was a grind. Cleaning up after him, picking him up after he would consistently fall out bed, waking up at all hours of the night became the norm for my stepmom who has steadfastly been there by his side the entire time.
It became apparent that my stepmom was not going to be able to care for my father at home anymore. At first she was reluctant: “This is what a wife should do for her husband, till death do us part,” she would remind me.
But then, almost as a sign, another one of my father’s “episodes” would happen. I vividly remember the night I received a call from my stepmom at 11:30 at night explaining that my father had gotten dressed and walked out of their apartment dead set on taking a spin in the car he had not had or driven for six years.
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My drive to Hialeah from Kendall was not a pleasant one. I had to half awaken my 8-year-old, put her in the back seat and head north to my father’s house to try to find him. I am not proud of the fact that I cursed my father and stepmom every mile on the way there. I was frustrated, angry, sad and perhaps, more than anything else, afraid. Quickly enough, I gathered myself and realized that this was not something that was being done to inconvenience me, it was part of my dad’s illness, and my stepmom had nowhere else to turn.
I desperately drove around Hialeah that night, which seemed darker than usual. I grew up in the city, which made driving around to look for my father that much more difficult. I passed many places from my childhood where I had shared moments with my parents. Thankfully, a security guard spotted him sitting on a bus bench and called the police because he noted that the viejito, my dad, seemed out of place. The police checked his identification and delivered him home safely.
That incident was our wake-up call. We had to find a place for my father to get permanent care, a nursing home that specialized in patients with dementia. That’s when my stepmother and I began perhaps the most frustrating and nerve-wracking phase of our anguished odyssey.
I know that many have said this in the past. However, it merits repeating: When you mix commerce and healthcare, the result is not very good for most patients. For the last 50 years or so, such comments have drawn politically loaded responses, the most common one being, “That’s socialism, and that system simply doesn’t work.”
Well I’m here to tell you that the system that doesn’t work is the greed-inspired structure that exists in this country where the patient’s wellbeing is the last concern.
“Does he have Medicare? Medicaid? Is he a member of an HMO?” These are all the primary questions asked before inquires about my father’s condition. As we speak, my father lies in a temporary hospice bed waiting to see if he can get into a nursing home that can care for patients with dementia. The process of caring for an elderly loved one with this horrible disease is difficult enough.
Perhaps someone in our greedy privatized system should take note and make patient care, and not the lining of their pockets, the priority.