The Long Goodbye: Dad Has Alzheimer’s
Mon Feb 04, 2008 at 11:02:31 AM PDT
It is primal scream time in the Irishwitch/Packhorse household. Either that or I am gonna run away form home.
On Friday, I learned, quite by accident, that my 87-year-old father, who now lives with us as diaried [ here] has Alzheimer’s. My husband mentioned it to me.—his mother, with whom we live temporarily until Dad’s house sells and he buys one here (or he gets a home equity loan and buys one) told him.
How did she find out? Well, the State of Florida is probably gonna jerk his driver’s license (and quite rightly) and he had to mail in a form filled out by his neurologist, of which MiL made a copy for him. In doing so, she skimed over it. Right up there on the first line it said "Parkinson’s Disease and early stage Alzheimer’s." I knew about the Parkinson’s—it’s been ten years since he was diagnosed, and he’d had symptoms for about five years before –but the Alzheimer’s was news to me. Dad didn’t tell me, either because he forgot or is denial or because he thinks it’s none of my business.
Well, this changes everything over night. Cognitive impairment is tricky—Alzheimer’s patients can go downhill rapidly. And I suspected that he might be suffering some cognitive impairment form Parkinson’s, but this diagnosis explains a lot. He has short term memory issues which have been increasingly apparent over the last three weeks. He obsesses over things, and anything he wants done must be done this second immediately. He will be fine, in a good mood, and then suddenly lash out for no reason with anger at someone (usually me; it seems to be okay to treat me rudely, since he’d one this most of my life). In the past, when he discussed getting him to move up here and explained what was required for us to inhabit the same house in some sort of peace, he accused us of trying to spendhis money to buy ourselves a big house he didn’t need. Much of the time, he’s just fine, and pretty good company. His mind is mostly pretty damned good. and when we discuss CNN and the primaries, and he’s sharp as a katana. But then he’ll suddenly decide he’s misplaced something that wasn’t misplaced and I have to stop whatever I am doing—making dinner, writing, doing laundry—and find it for him instantly (if I don’t, he nags till it’s done).
Dad is highly unlikely to give his doctors permission to talk to me, so I can find out what to expect? Why? Family dynamics. Dad is Irish-American, and it seems to be a cultural trait that you don’t let anyone know your business—especially financial and health business. Which means, of course, I feel like a mushroom: kept in the dark and fed bullshit. But this time we can’t go with the flow. We need to discuss some things now, like financial planning and powers of attorney and what to do if he can no longer be cared for at home. The problem is, he seems to think I am an idiot, and he has a crush on MiL, who enables and babies him, and is part of the problem. I attempted to discuss this with her Saturday, and pointed out that Alzheimer’s patients can go downhill fast, especially when they also have Parkinson’s, and we can’t wait forever. Her response was typical MiL, discounting my concerns and acting as if I haven’t a brain in my head, "He’s fine. Nothing has to be done that soon."
I told her politely I disagreed, that I actually do know something about both his illnesses, and that you cannot predict when he’ll hit the next stage of Alzheimer’s, and any legal arrangements must be made while he is still high-functioning.
She looked at me with that sweet Southern hypocritical smile, and said, " I think you’re wrong, but I acknowledge that you feel this way." Translated from her native tongue of Passive Aggressive Condescension, that means "You are a blithering idiot who knows nothing about anything, but I can see you actually feel this way, stupid and incorrect though you are." This is her usual manner with me whenever I dare to not agree 110% with her.
I looked across the table at her and replied, "I hope you didn’t mean to sound as condescending to me as you did just then." It’s scary. I am beginning to speak what Ben calls High Southern Matronese. I hope I can lose it once we’re outta GA finally, because I hate playing this sort of game.
She apologized. Sorta. As much as she is capable of. WIthotu ever acknowledging that Imight actually know what I am talking about.
I pointed out that I am a paralegal, and Ben has been a CAN and is now a nursing student. IU know far more about the legalities of this than she does, and he knows more about the medical aspects, having cared for Alzheimer’s patients as a CAN at a nursing home. She then went silent and changed the subject. Goddess, how I LOATHE passive aggression. She could be such a huge help, but she makes things twice as hard. When she flew down to Florida to bring him back, she did so without consulting us or discussing how things would be handled. She made promises on our behalf that we can’t keep. She told him he wouldn’t have to pay dime while he’s under her roof, and he hasn’t. We’ve taken him out to dinner when we grabbed fast food—he’s never offered to spend a penny (except when he goes out with her, he’ll spring for ice cream or fast food). He eats as much as my husband and I combined, so the food budget is doubled, and he’s gonna have to kick in something. He complains we eat so much chicken and rice. Sorry, but we don’t eat steak twice a week, and we can’t afford the stuff he expects to dine on. He wanted to know when we’d have prime rib, like we did at Christmas, and I told him flat-out, "Not till next Christmas. We can’t afford it. It’s our big treat to ourselves once a year." He actually has $300 more a month in income than we do, and he isn’t paying for gas to get to school every day, as The Packhorse is (and it is a long commute from the burbs to NE Atlanta where his college is located)
So we have to sit down and have the Big Discussion with him. But before that we have to sit down with MiL and explain reality to her. She made promises to him we cannot keep. And she doesn’t recognize the seriousness of an Alzheimer’s diagnosis, and how quickly his condition can change. Things must be settled before he deteriorates, because, judging by his behavior now, he’s not gonna be one of those sweetly confused old souls. No, he’s gonna be like the old gentleman my husband cared for who hit nurses with his cane and shouted obscenities. He’s also likely to become more suspicious and paranoid, not less, over time, since his natural bent is to keep secrets and assume everyone’s after his money, which will make everything even harder than it is now. We have to make her understand that, and win her tour side, because she is the only one he’s currently listening to. And that’s gonna be as much fun as talking to him will be.
And I would give anything for some quiet. Volume Wars are still on-going, and we can’t afford to shell out money for a wireless headset—they cost between 40-60 bucks, and we just don’t have it. I spent that money on getting my ears re-pierced (they’d closed up on me), and I guess I shouldn’t have wasted it on myself. I don’t think he’d be willing to spend any of his money because MiL told him he doesn’t need to part with it. I’d give anything to be able to watch one of the three TV shows I watch currently (Torchwood, Lost and, soon, Jericho) without asking permission to do so (we are paying for the cable, natch) because Dad doesn’t share well (never had to).
Despite all this, I am glad he’s here where I can keep an eye on him and see he’s eating properly. I enjoy talking politics with him. I enjoy taking him to the library where he has discovered large print books and is reading again (using your mind helps stave off the worst symptoms of Alzheimer’s a bit). I am happy I can help him. He’s regaining some of the weight he’s lost (I am a damned good cook and so is Ben), and he’s only fallen twice in there weeks (and the last time, he caught himself before he actually fell to the ground).
But it means we have no time alone together (MiL is sleeping in the next room, which means it’s hard to talk, let alone make love without worrying you’re disturbing her)—we’ve managed three hours when she offered to take him to church and we had a luxury we seldom indulge in: dinner at a Chinese restaurant and an hour to run errands for us (like go to the bookstore, where I spent all of 25 bucks on books). It’s not like we had tons of time anyway—the nursing clinicals my husband is in are all day classes followed by hitting the books immediately after dinner. It also means we have to give up small luxuries because we can no longer afford them because MiL told him he doesn’t have to contribute a cent. And I worry because even when Ben graduates and is working, we aren’t gonna be rolling in bucks—he’ll likely make around 45 K a year as an A.S. R,N.—and there’s no way we’ll be able to afford a nursing home when/if he needs fulltime care I can’t give (I can’t lift because of back issues). I need to ask him about his insurance and whether he has a long term care policy which will help if he stays at home.
Many of you have dealt with this, and some of you will be facing it in the next few years. Lots of boomers here, and we all have again parents. Folks, this is what it looks like. The challenges will likely be different—most people aren’t as difficult to deal with on a good day as Dad always has been—but some will be very similar. So share your frustrations, and please, if you have ideas on how to approach Mil and, afterwards, Dad on the finances and legal issues, please offer them. I have absolutely no idea what to do. I’ve done some research, and I need to look into respite care so I can manage a few hours alone for us now and then.
So, please share your experience, advice, wisdom and concerns
