Friday, March 19, 2010

Life and Alzheimer's, Part 2, and yellow houses trimmed in purple

Recently over at Just Eat It, some housecleaning was going on, and some pictures were posted of the beautiful yellow-painted, purple-trimmed house were posted. These pictures moved me strangely, because although this house is far away from us in the northern U.S., our friend Lulumarie's house, nestled into a lovely old neighborhood in St. Augustine, is has an almost identical, and clearly not completely unique, color scheme. I had to share some pictures of Lulumarie's house with Just Eat It and was too much fun not to share it here. I mentioned the unexpected coincidence of color to Lulumarie and we talked about the surprising colors in her quiet neighborhood of white and cream and pale-green houses.

"When I told the guy at the paint store what I had in mind," she told me, " I said that I was a little worried about the reaction of my neighbors." Her neighborhood is an old, diverse one, but not one where people paint their houses in the colors of the Caribbean. But the paint store guy looked at our dear Lulumarie and said, "Are you painting your house for you, or for your neighbors?" She pauses for a moment, recalling, and then finishes the story: "So I said, I'll take the yellow and the purple." We love Lulumarie for many reasons: she is both generous and kind, she has very high expectations and always delivers on them, and she loves with her whole heart. This story shows you a glimpse of the inner certainty we love, too, not to mention that unerring sense of artistry and color. Before we move on to the difficult topic of Alzheimer's in earnest, it's worth mentioning that Rodney's Uncle Sam (different family branch, but also afflicted with the disease) was a neighbor of Lulumarie's, and used to stroll through her neighborhood, seeing it through eyes fixed on a view of 20 or 30 years earlier. It's a funny old town.

Today I was asked, by a friend at work, about nursing home care and Alzheimer's and thought I needed to write more about this. Alzheimer's is far less fun to write about than yellow houses, but it has informational value that might change someone's experience, so I'm going to face it. Maybe you don't have to read it. Maybe you can come back to it when you think you do need it, or pass it along to a friend who may need to know. For what it's worth, here is Life and Alzheimer's, Part 2.

When Pop came to us, he had been hospitalized in the town where he lived, more than 300 miles from his family (the topic of another post, for another day). The hospital released him to Rodney's brother Rick, on condition that he be placed in a nursing facility for a 30 day evaluation. The hospital staff was concerned that he might not be able to care for himself. Rodney and his dad had been estranged before all this happened; Pop had also been estranged from his oldest son because generally speaking, Alzheimer's or no, he was difficult to get along with, stubborn and unyielding. Rick brought Pop to St. Augustine. We talked about it, and agreed the best plan was to get Pop admitted to a local nursing home, mostly because Bernice lived there.

Bernice was the Nicest Person in the World, Ever. I am not making this up. She was Pop's wife, the step-mother of Rick and Rodney, the mother of six of her own lovely kids and as sweet a person as I've ever known. After she retired, she wanted to live near her children and came to St. Augustine; Pop refused to move with her. When she agreed with her kids that a nursing home would be best for her (she was diabetic and needed dialysis several times a week) she moved into a comfortable, homey local facility. Pop divorced her about that time, because he didn't want to be liable for her medical expenses. (I know, I know.) But as his dementia progressed, he lost any memory that they'd been divorced. He only knew that he missed her, and woke up in the middle of the night looking for her. Before Rick brought him to St. Augustine, Pop would call us or Rick or anyone else he could think of, sometimes at 3 or 4 in the morning, out of his mind with worry: he didn't know where she was. He thought she was out on the town, cheating on him. It was so absurd it migh have been funny if it hadn't been impossible to imagine her doing any such thing.

So: we thought we could get him to stay in the same nursing home. Bernice was there; he wanted nothing more than to be with her; we had at least the 30 days Medicare would pay for to get him cared for and figure out our next steps. We filled out all the paperwork and checked him in, and went home to try and recover from the stresses we had never expected. At about sundown, the nursing home called to tell us Pop was standing alongside the busy highway, refusing to come back in, waiting for someone to pick him up and take him home. He absolutely would not stay.

I'll skip some of the details and compress the timeline, but it came down to this: how do you make someone submit to medical care for a medically-requested assessment? In the state of Florida, the answer is, you can't. There is no control short of a plenary guardianship in Florida by which you can compel someone to get medical treatment they don't want. We went to our family attorney for help; we needed to control Pop's location and care, we needed to figure out the maze of Medicaid (his retirement was far too small to cover the costs of private care), and we needed to get some kind of mental health relief. We were all pushed beyond the limits of daily stress, into some state of panic I can hardly put into words. To our horror, we realized that our very competent family lawyer had no idea how to deal with the details of geriatric law. While we waded through this, Rick and his family faced eldercare health issues with his wife's family. I agreed to serve as guardian, thinking (naively), How hard can this be? I thought the same thing about applying for institutional Medicaid to pay for nursing care for Pop. Are you kidding? How hard can it be? I'm a smart person. I can do this. It's painful to even think back on it. I was so wrong.

The best advice I can give to anyone dealing with eldercare issues is this: find a lawyer in your area who specializes in this area. Trust him or her with everything. Pay the money. It might cost you as much as 2 or 3 thousand dollars or more out of your own pocket. For us, it did; it cost more than I can tell you and much more than Pop had. Pay the money. If you have to hock something, pay the money. This may vary in your state, but I still believe in paying for the initial consultation to be sure. And no matter what you do, there may be another price to pay in the currency of your own family. For us, there came a breaking point for Rick that took Rodney and me completely by surprise.

We'd placed Pop in a nursing home where they could control his ability to leave, and I'd been appointed guardian, pending the final decision of the court. We'd passed through about a year of unbelievable stress on ourselves, our children, our friends. But there was breathing room, it seemed, until Rodney happened to run into a mutual friend of his and his brother's. The guy said, "Wow, how about Rick selling everything and moving to another state; freaky, huh?" Rodney mumbled some response and came home to tell me that without a word, Rick had sold his business, his trucks and other business assets, his house... and had moved hundreds of miles away, to another state. We haven't talked to him since.

Alzheimer's is a terrible affliction for the sufferer. It takes memory and personality, and it is ruthless and always ends badly. But while victims of the disease go slowly away from their loved ones, those same loved ones suffer the torments of another hell. If you're one of these people, or in line to become one, be strong and brave. Get a lawyer, and get one who knows about elder law in your state. And you can always talk to me. It has changed us forever.

A final, much more positive note, of spring in the air: I've noticed the tightly closed azalea buds in our neighborhood finally beginning to open their petals to the warming air. As I noted the other day, the violets are in bloom, and we've seen the catbirds; this year there seem to be a small family group. There is a hermit thrush nesting nearby, a red-throated woodpecker and we've even seen a pileated woodpecker family. These guys are elusive and careful, but stay tuned for photos. For tonight, one of our tiny wild violets will have to serve to take us back to Lulumarie's tranquil house and connect us to the lovely house of our friends at Just Eat It.

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