Kids Go to Court for Their Dad
Posted: 06/26/2013 6:00 pm
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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.
We were told to wait a few days before calling Dad. I waited a week, but in the meantime, talked to the staff. Dad's social worker said something I thought strange, something about the family problem. I told her I wasn't aware of any problem; but soon found out that the staff considered my sister's call's to dad a "problem."
From the very first, every conversation we had with Dad, he begged to be released from the VA Home. We would try to change the subject in creative ways, but he would have none of that.
"Not another night in this place," he'd suggest hopefully, and when we would dodge that question, he would ask who wanted him to stay there. "I've already done four weeks in this joint," he said to me on June 1. "I'm ready to go. I went to war with these guys, why do I have to live with them now?" We would explain he had Alzheimer's. He'd say, he knew he had "memory problems" but still couldn't understand why he had been committed to an institution. "Don't I have family that will take care of me?"
It became more and more difficult to dodge that question, and explain his wife's position because by the time I visited at the beginning of June, communication had broken between my siblings, me and our stepmother.
When Scott offered to care for Dad, I questioned his commitment and motives, but after a few lengthy phone calls, was satisfied it would work just fine. Scott and Dad could live on Dad's social security income; Scott's is a first floor apartment, with a fenced backyard. And like before, Sarah could help out.
But Dad's wife replied it was "unacceptable."
I made plans to visit even before Dad went into the VA Home, and managed to get a couple days off at the end of May. The rain, endless construction on the toll roads, vivid greenness and humid air -- I was home. We drove to LaSalle the next day. Dad cried when he realized we were not all there to take him with us. He looked a lot smaller and thinner but he was still Dad -- a confused, lonely version, but no zombie. I was so relieved. We stayed several hours, but Dad didn't want to leave his room, unless it was for good. We were there several hours, and he never let go of the topic of going home although we tried lots of diversions.
The staff was friendly, but when we broached the topic of taking dad home to live with Scott, the smiles faded. Sarah was taking video of Dad when one said, "That's enough. We're not going to have any more of that."
The next day we saw the director. He spent over an hour listening to our concerns about dad, and seemed sympathetic to the idea of Scott living with family, but said "we are bound by the wishes of the POA."
We were about to find out what that meant. We tried to take dad out to dinner. They made a call; permission refused. It struck me that he was wearing an ankle bracelet, and the near-constant beeping that was giving me a headache was caused by the residents straying too near a door. The Alzheimer's ward, behind a locked door, consists of twin dining rooms, a circular nurses' station, a sort of sitting area next to the locked outdoor patio, and twin hallways off in either direction. There is a locked "nourishment room" that Sarah had already found for making coffee. The resident's rooms are hospital-like, with personal touches, except for Dad's. The pictures Sarah had put on the wall were gone, he was packed. Ready to go.
He was happy to see us, and had spruced up for our visit; he'd remembered we were coming back. We cajoled him into the dining room and sang songs. Dad belted out verse and chorus to "Old Man River." The other residents gathered slowly for their dinner, and soon were clapping along. Dad laughed at our dumb jokes and danced a soft-shoe to show us he was fit enough to go home. The next day, he did four pushups. ("See? Nothing wrong with me that hugs won't fix.")
Many Alzheimer's patients want to go home, but the home they long for is long gone. Alzheimer's is a progressive disease. Dad's doctor had explained to Sarah that Dad's progress was consistent, and he had at least a year left of moments of clarity. He said Dad could "possibly benefit" from one more year with family. So we were disappointed on Saturday morning by a letter from dad's wife, stating again that all our proposals for dad to live with us were unacceptable.
We took four dozen donuts as a treat for the entire ward and drove -- in the rain -- again, to La Salle. But Dad wouldn't come out of his room and eat donuts with the rest of the residents. He said he just wanted to talk about why he was there. He said he knew his wife was responsible. "She doesn't love me. If she loved me she'd take care of me."
We siblings agreed. Dad did not need to be in a home, he had a home -- with any of us. We made a plan, assigned tasks. We would call every agency and do whatever we could to help him.
We called the Illinois Advocacy and Guardianship Commission, the Department on Aging, Alternatives, The Alzheimer's Association, The Veteran's Administration, the National Caregivers Hotline; the elder abuse hotline. Adult Protective Services. Equip for Equality. The West Central Illinois Legal Assistance, Naval Legal Services, the Disability Rights Legal Center. The Winnebago Bar Association, Prairie Legal Service, Illinois Legal Aid and the Visiting Nurses Association.
Everyone was sympathetic but most said there was little they could do. One of these agencies told Sarah that Dad could leave anytime he revoked his POA. She drove there and presented the paperwork to the staff. They called the police and she was asked to leave.
After that we were prohibited from calling and visiting. None of us have been allowed to speak to him or see him since.
We read this was a violation of dad's civil rights, but that we are not alone. Family members who complain about nursing home inadequacies face retaliation, sometimes to the point of being banned from the premises. Advocates for the nation's 1.6 million nursing home residents say that the number is rising."
Patricia McGinnis, executive director of the California Advocates for Nursing Home Reform, a San Francisco-based advocacy organization, says, "we're seeing more retaliation than ever before against those who stand up for their rights."
Jaime E. Martinez, General Counsel and Freedom of Information Act Officer for the Illinois Department of Veteran's Affairs said, "If the POA determines to limit or restrict access of third parties to the resident, we respect these wishes, providing they are consistent with the best medical advice."
This therapy of isolation and neglect, to facilitate "adjusting" is common, as are nursing home violations. The Illinois Veteran's Home at La Salle has been cited and there wereresidents fired for abusing patients in 2011. "According to the lawsuit, one employee inserted a suppository into the rectum of an Alzheimer's resident for no other reason than it would seem funny to the next shift of workers who discovered it."
Scott filed for guardianship in the 17th judicial Circuit Court, County of Winnebago; the court date is Friday June 28. We hope that even if my brother and sister have to show up in court without a lawyer that Dad will get to come home for a furlough that the VA offers residents. The judge will have to decide our father's future, whether he lives the rest of his days alone, with strangers, or with his friends and family.
Maybe he will be able to explain the difference between "becoming agitated" and a coherent plea to go home; the difference between "adjusting" and giving up. "Stockholm syndrome is not 'adjusting'," a friend commented on the Friends of Rod MacDonald Facebook page.
"I miss him so much," Sarah said. "If he were with us he'd get the personal attention, his coffee, backrubs, he loves all that."
