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22 September 2009 @ 11:33 am
whichever way the wind blows  
My dad has once again changed his mind on just where he might want to live, should his Parkinson's disease require more assistance with his ADLs (a medical term for Activities of Daily Living...things like dressing, bathing, fixing a sandwich, etc.) than my step-mom already provides for him. Essentially, he's been mentally adjusting to the idea of living in a so-called  Assisted Living facility. Up until yesterday, he was most interested in facilities in the Midwest. That's where he grew up, spent his working life and raised a family, and that's where his wife wants to return someday, when she, too, is older and more ill, so that she can be near her Iowa relatives. Currently they live in her home in Arizona.

Right now he and she are visiting here in Iowa for several weeks. While his wife takes a side trip to see her ailing brother in Kentucky, Dad has asked that  my sister Carol and I accompany him to at least two Iowa AL facilities. So we have two appointments next week, over 2 days. ( I found both places after a rather exhaustive search. I first focused on the Phoenix area and also on the six cities near where each of Dad's six kids lived, then looked for comprehensive care places in those areas; he had said he wanted to be near family. Comprehensive care means a place that can handle just about any living arrangement senior citizens might require, from independent living arrangements  to full-fledged nursing homes, and everything in between, so they can theoretically accommodate your changing needs. While Parkinson's disease slowly debilitates and is incurable, drugs can control the symptoms--increasing rigidity, motor and balance issues, dementia--and patients can live for decades, slowly declining.)  I am more-or-less Dad's financial adviser, and Carol is a medical technician who has dealt a lot with elderly in-laws and nursing homes and such. So Dad wanted us both on hand for these visits. Carol has to drive some 8 hours from her Wisconsin home to be on hand for this. I'm much closer, though still 2 hours away. She and I had already nixed the idea of a facility in her area, although she and her husband have generously offered to temporarily house Dad at their home. He husband is a physician.

Then yesterday I get a call from Dad, who's in Iowa. He puts me on speaker phone so Joy can also participate in the conversation. I find out that his meds were adjusted five days ago, and he says his brain has been foggy ever since. He and she have canceled some of their social outings because he's afraid he won't be able to remember people's names. They're on the verge of canceling a big birthday dinner party 2 weeks hence. Joy still plans to make her Kentucky trip, but she insists that Dad not be allowed to drive without her also being in the car, in the passenger's seat.

Fine. I'll drive us to the appointments.

Yes, keep the appointments, says Joy. But "your Dad now has no real intention of returning to the Midwest. The appointments will only be to gather financial info so that comparisons may be made with the costs of AL facilities in the Phoenix area. And before we do that, we'll look into hiring this woman I know who works in people's homes as a sort of nurse assistant. That way your dad can stay at my house, in familiar surroundings, until he really has to go somewhere else. I can't do this without help."  None of Dad's kids live in Arizona.

(This from the woman who insisted that she'd never allow anyone to come into her home for such a purpose. So I guess Dad isn't the only one who's had a change of heart.)

I have all the financial info already. Why keep the appointments if he has no intention of ever living in those places?

"Well, that way your dad can't say--once we're back in Arizona--that he wishes he HAD looked at those places because maybe the Midwest isn't so bad after all."

Um, okay. I'm starting to see the pattern here. This is, after all, the same guy who was set up to have an MRI four different times and never did go through with the procedure, even while under mild sedation. He totally freaked out each time. He appears to have a sort of undiagnosed claustrophobia, along with everything else. And like plenty of older people, he is hyper-sensitive to being railroaded into decisions. That's okay. I always knew this had to be HIS idea.

"I just don't want to be a burden to anyone, Hon," he says. "But I am so damn confused right now. I need to be in familiar surroundings. And Phoenix is where my doctor is. So as long as Joy lets me stay at her house, I think that's where I'll be best off."

Okay. I'd been looking forward to having him live closer to me, but I see his point.  Only thing is, I'm almost certain he'll change his mind again. It's like his way of maintaining a modicum of control over his life, even while the disease slowly robs him of motility and neural function. At least if I look at it this way, it's more understandable.

I just hope he doesn't change his mind about even visiting the facilities, or at least that if he DOES change his mind about it, he does it BEFORE Carol makes that 8-hour drive.

And I guess it's probably time to open the envelopes from the Phoenix facilities I'd contacted months ago, but failed to open, because by the time I'd received them, Dad had said he was only interested in Midwest places.
Lindsey Kuperlindseykuper on September 23rd, 2009 04:56 pm (UTC)

I can understand Grandpa Joe's indecisiveness and Joy's change of heart. I'd be indecisive too. I think these kinds of decisions would be damn hard to make even if one of the parties involved didn't have a degenerative brain disorder.

I think Grandpa Joe will be happy to spend time with you and Carol even if nothing productive is accomplished at all on the trip, just because you're his daughters.

I'll email you about Grandpa Joe's birthay party in Mt. Vernon.

deepdistractiondeepdistraction on September 23rd, 2009 08:16 pm (UTC)
Yep. Sara commented to Joe that this might be one of those deals where it wasn't really possible to make "the correct" decision, because there are so many unknowns: what if Joy (who is healthy now) gets sick or injured or dies? What if the Phoenix area AL facilities are prohibitively expensive? And so on.

Dad is usually happy around any of his kids no matter what we're all doing. Our visits to the AL places may have a serious undertone, but there's no reason we can't remain lighthearted.