The verdict is in - after seeing a specialist up here yesterday (after a three-month wait), it turns out that Mom most likely does have PSP (progressive supranuclear palsy), and not frontal lobe dementia. We were hoping for straight Parkinson's -- Can you believe anyone has ever hoped for Parkinson's? -- because the symptoms are much more treatable. I had hopes of an Awakenings-like miracle with her on levodopa. Suddenly, Mom again! Laughing, talkative, capable. There she'd be, serving the kids breakfast when I came downstairs. Instead, this morning she tried to make the bed with me still in it.
But PSP it is. It is still primarily a movement disorder, and big risks down the road are the inability to walk or to swallow. Still, Mom has a better chance of retaining more of her mental faculties than if she had FLD. So we'll take what comes.
It occurs to me that perhaps I should change the name of this blog.
Tuesday, February 23, 2010
Sunday, February 21, 2010
Time in a bottle
Mom's been here for two full days so far, and one thing among many I've learned that jumps out at me: Time loses all meaning when you're caring for a dementia/Parkinson's patient. Wait, strike that -- it has greater meaning, because you seem to need so much more of it.
I'm one of those prepare-hours-before kinds of people, the woman who makes her kids' lunches the night before and is at the airport exactly two hours ahead. Given a deadline, I'll mentally put it at days before.
I've had to rethink my habits. Mom needs twice as much time and dozens of steps more to even get out the door, and you can't rush. A shirt simply has to be drawn slowly over her arms, one of which can't lift past 65 degrees, thanks to last year's bone-breaking fall; rush it, and she'll get tangled. If she eats too quickly and she'll choke, and she almost always eats too quickly, so one needs to force her to slow down, which requires parceling out tiny portions. Toileting requires at least ten minutes simply for her to fold five squares into a neat rectangular shape, and she will not -- will not -- use it bunched. Going down the stairs is a delicate balancing/strength move for both of us, and walking quickly is an invitation to disaster.
I'd like to think that all this extra time between actions gives me the chance to achieve a Zen-like perfection in each one. Wax on, wax off. Breathe. Regrettably, I'm not that enlightened, but I will say that magnifying each little chore we go through makes you appreciate just how much each of us do each day.
I'm one of those prepare-hours-before kinds of people, the woman who makes her kids' lunches the night before and is at the airport exactly two hours ahead. Given a deadline, I'll mentally put it at days before.
I've had to rethink my habits. Mom needs twice as much time and dozens of steps more to even get out the door, and you can't rush. A shirt simply has to be drawn slowly over her arms, one of which can't lift past 65 degrees, thanks to last year's bone-breaking fall; rush it, and she'll get tangled. If she eats too quickly and she'll choke, and she almost always eats too quickly, so one needs to force her to slow down, which requires parceling out tiny portions. Toileting requires at least ten minutes simply for her to fold five squares into a neat rectangular shape, and she will not -- will not -- use it bunched. Going down the stairs is a delicate balancing/strength move for both of us, and walking quickly is an invitation to disaster.
I'd like to think that all this extra time between actions gives me the chance to achieve a Zen-like perfection in each one. Wax on, wax off. Breathe. Regrettably, I'm not that enlightened, but I will say that magnifying each little chore we go through makes you appreciate just how much each of us do each day.
Tuesday, February 9, 2010
"It's just like having a baby!"
It's nine days until Mom comes to stay with me for a month -- three until I fly down to pick her up. Am I ready? Not in the slightest. Logistics-wise, I still haven't figured out where Mom will sleep. Downstairs in our chilly renovated basement (with me of course), far away from where my children sleep, upstairs? Husband is still working out of state during the week, so I see potential for midnight freakouts. Upstairs, where I will have to lock us in the bedroom to prevent nocturnal wanderings, and potentially a fall down the stairs? Yes, I considered a gate, but she's tall enough to fall right over it; her balance continues to grow worse, something we are hoping future meds might help as soon as she gets a firm diagnosis one way or the other.
It's a little like having another kid. I have even hired my ex-nanny, a capable and serene person, to help me out twice a week, or now and then when I need to take a break or buy groceries. I bought diapers. I hid bleaches and potential poisons and stashed throw rugs to prevent tripping. But I will need to rethink my schedule to accommodate Mom having to accompany us everywhere. My kids are at the age where they have a modicum of independence, so showers, errands and so forth are much easier; I've been spoiled.
Now, I'll have to regress and behave as if, say, I have a three-year-old again, plus two primary school kids. Lots of women do it, I encourage myself -- have three or even four kids that they manage not to kill, and even to feed and care for. Our town's librarian, with whom I am chummy, was telling me that people said to her about her 80-year-old dad, an Alzheimer's patient, "Now you know what it's like to have a baby!" (She has no children.)
We both had to hoot at that. Thing is, it's not like having a kid. Your kid will someday stop wetting itself, and will be able to verbalize its wants and needs, and stop having tantrums. Your parent won't. That element of temporary stress, of hope for the future, and unconditional love, keeps a mother going through the tough times. What's there for a daughter? Love, yes. And gratitude, and lots of duty.
Emotionally, I feel more secure about dealing. I'm getting better at realizing the best way to achieve goals is to, above all, remain calm, thanks in goodly part to yoga, and to just not giving a damn about most things anymore, which isn't making me a better person, but sure does help keep me sane. I'm not reading much news other than health; I forbade myself to think about trash and climate change and environmental toxins and taxes; I smile when someone cuts me off at school pickup. Surely this is the path to serenity.
It's a little like having another kid. I have even hired my ex-nanny, a capable and serene person, to help me out twice a week, or now and then when I need to take a break or buy groceries. I bought diapers. I hid bleaches and potential poisons and stashed throw rugs to prevent tripping. But I will need to rethink my schedule to accommodate Mom having to accompany us everywhere. My kids are at the age where they have a modicum of independence, so showers, errands and so forth are much easier; I've been spoiled.
Now, I'll have to regress and behave as if, say, I have a three-year-old again, plus two primary school kids. Lots of women do it, I encourage myself -- have three or even four kids that they manage not to kill, and even to feed and care for. Our town's librarian, with whom I am chummy, was telling me that people said to her about her 80-year-old dad, an Alzheimer's patient, "Now you know what it's like to have a baby!" (She has no children.)
We both had to hoot at that. Thing is, it's not like having a kid. Your kid will someday stop wetting itself, and will be able to verbalize its wants and needs, and stop having tantrums. Your parent won't. That element of temporary stress, of hope for the future, and unconditional love, keeps a mother going through the tough times. What's there for a daughter? Love, yes. And gratitude, and lots of duty.
Emotionally, I feel more secure about dealing. I'm getting better at realizing the best way to achieve goals is to, above all, remain calm, thanks in goodly part to yoga, and to just not giving a damn about most things anymore, which isn't making me a better person, but sure does help keep me sane. I'm not reading much news other than health; I forbade myself to think about trash and climate change and environmental toxins and taxes; I smile when someone cuts me off at school pickup. Surely this is the path to serenity.
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