Imagine waking to an unfamiliar hospital-looking room. You recognize no one; you can't remember how you got there. Everyone you ask lies. No matter how logically you ask, they will not tell you why you've been imprisoned; but from the looks on their faces, you begin to fear you will never get out. You will die here.
This is not a Kafkaesque torture scene. It is happening here in America, to my 87-year old father. He, and five and a half million other Americans, has Alzheimer's.
Growing up in Rockford, in the '50s and early '60s, my Dad, Rod MacDonald, was well known in his trademark red beret as TV personality "Roddy Mac." The popular kid's show was just a side-line for Dad, as he also wrote, produced, and sold television and radio ads at WREX Channel 13; he was also an actor, a musician, a WW2 veteran, and typical Dad who did lots of chauffeuring and dispensing petty cash. He worked a lot, as all Dads did then, and he and our mother Virginia MacDonald were for decades, until Ginny's death of cancer in 1987, a driving force behind the inception and success of the Rockford theatre scene.
After Ginny died, Dad remarried and seemed happy. He and his wife continued to act, and travel occasionally to New York and Chicago to visit theatre friends and see shows. But his memory problems began to become apparent; he was diagnosed with Alzheimer's.
For a few years the disease did not seem to make that much of an impact on his daily life, although he did quit driving and later, going to the gym. Then a year ago, my sister began getting paid to stay with him during the day, while Dad's wife worked. Sarah and Dad did crosswords, drank coffee, sang songs, and took naps.
Then I heard Dad's wife was talking about putting him in a nursing home. My sister and I both offered to take dad home with us and care for him, but were told that wasn't feasible.
Within weeks, Dad was on the waiting list of the Illinois Veteran's Home in La Salle, Illinois, about two hours from Rockford. Sarah initiated a tour of the facility, which was not the awful B movie nightmare they'd imagined; the staff seemed caring and the facility modern and adequate. We were told Dad would adjust. We were told there were no restrictions on visiting: we would be able to take Dad out for a walk, a sandwich on a park bench, even on vacation if his doctor agreed.
But he was adamant he didn't want to go, he wanted to be with his family.
They all said leaving him there was awful. "It was the hardest thing I ever did," said his wife. "Don't leave me here, please," Dad cried.
Scott was shaken to the core by this scene. He thought back to helping to care for dad's own parents, in Madison in the 1970s. And Ginny, during her eight-year battle with cancer. Scott decided to step up.
My brother offered to quit his job and take Dad. We phoned and emailed with detailed plans for Dad's care. This is when I first heard that Dad had signed a POA -- or, Power of Attorney, giving the power of healthcare decisions to his wife.
What sounds like a perfectly reasonable idea has turned our dad into a virtual prisoner, a man with an ankle bracelet, a "resident," who is not allowed to talk to his own kids; a disenfranchised, income-producing ex-person, a man with no room of his own, who wonders what has become of his family; whose identity is gradually wiped away along with his civil rights.
In theory, a POA entrusts someone with one's healthcare decisions if you become incapacitated. In theory, your POA has your best interests at heart, and is bound to act in your behalf. But in our reality, we have found out that a POA can be a concrete wall,isolating patients
from all contact with friends and family.
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