Wednesday, June 28, 2006
3 a.m.
She say it's cold outside and she hands me my raincoat
She's always worried about things like that
She says it's all gonna end and it might as well be my fault
And she only sleeps when it's raining
And she screams and her voice is straining
---Matchbox Twenty
Pacing across the porch at 3 a.m., life seems a lot less complicated. Quiet and serene, the scenery's a perfect match for late night (early morning?) contemplation. At 3 a.m., nobody can hear you scream. Or something like that.
They say the only way to identify Alzheimer's Disease with certainty is in autopsy. Cerebral shrinkage, destruction of brain cells, and the singularly definitive factor: amyloid-derived diffusible ligands (ADDLs), a minuscule toxic protein suspected of triggering the disease, in levels up to 70 times greater than found in non-Alzheimer affected brains - these are the disease's physical calling cards.
Helpful and detailed though it is, science doesn't need to tell me much about someone I've known 40 years. At 3 a.m., even my bones tell me what it cannot, as yet.
Despite all protestation to the contrary, despite knowing where the tea bags are located in the cupboard, and remembering what she ate for breakfast, the mother I know is rapidly becoming someone else.
Worse, it appears on some level she knows this. We all do. I'm just the only one willing to talk about it.
She panicked when I was at the library for twenty minutes, earlier that night. "I was just scared. You were gone so long," she says, her arms reaching upwards to grasp my shoulders. Her voice has an unfamiliar quality - quavering, uncertain, childlike. My absence, along with a popped fuse, my dad's vocal anger over same and her own unreliable bladder had short-circuited her wiring. Here she stood, semi-naked, shivering, in tears and unable to articulate exactly why.
This is the woman who prided herself on driving hundreds of miles in 1987, first to visit us in Virginia, then up the coast to her sister's in New Jersey. She balanced checkbooks to the penny, knew the best interest rates at any bank within 20 miles, changed her own flat tires. Her searching eyes and guileless face no longer fit a person who was once so frustratingly guarded even her husband didn't know what she was thinking.
Now she cannot remember simple words, or that it's dangerous to walk down the hall in the middle of the night by herself. Or that I actually live somewhere else.
"Now that Anne's home, I'm okay. Paul, isn't it great that Anne's come home?" This she offered after things calmed down that night.
But it's not so great. And I'm not really home. For two weeks, at 3 a.m. I'm on their porch, at their house full-time when not at work, but nowhere near home. After the two weeks, it's anyone's guess.
Home for me is a mile away, with the pets and daughters whose resentment at my absence grows daily, and who need me every bit as much, if not more. I could tell her this, but she won't remember in two weeks, anyway. And it'll be ugly enough without a few replays.
I suspect mother and I are now not really that different: imprisoned, entombed, damned to futures not of our own design.
At 3 a.m, I can think about all of this stuff and ponder the next move, and why my father and brother refuse to discuss what we'll do next, or what's happened to the wife and mother we used to know.
I can wonder whether or not the speech therapist and social worker were right when they said she probably can't ever be left alone again. That she might turn on the gas burner and forget it's running, or get in the car, drive away and forget where she's at.
At 3 a.m., when it's quiet and serene, I can look deep inside and wonder if I have what it takes to really give what I know they're going to ask from me, if I'm even capable of abandoning my own little life for them, and what it might cost, in all senses of the word, to see this nightmare through to its inevitable conclusion.
She's always worried about things like that
She says it's all gonna end and it might as well be my fault
And she only sleeps when it's raining
And she screams and her voice is straining
---Matchbox Twenty
Pacing across the porch at 3 a.m., life seems a lot less complicated. Quiet and serene, the scenery's a perfect match for late night (early morning?) contemplation. At 3 a.m., nobody can hear you scream. Or something like that.
They say the only way to identify Alzheimer's Disease with certainty is in autopsy. Cerebral shrinkage, destruction of brain cells, and the singularly definitive factor: amyloid-derived diffusible ligands (ADDLs), a minuscule toxic protein suspected of triggering the disease, in levels up to 70 times greater than found in non-Alzheimer affected brains - these are the disease's physical calling cards.
Helpful and detailed though it is, science doesn't need to tell me much about someone I've known 40 years. At 3 a.m., even my bones tell me what it cannot, as yet.
Despite all protestation to the contrary, despite knowing where the tea bags are located in the cupboard, and remembering what she ate for breakfast, the mother I know is rapidly becoming someone else.
Worse, it appears on some level she knows this. We all do. I'm just the only one willing to talk about it.
She panicked when I was at the library for twenty minutes, earlier that night. "I was just scared. You were gone so long," she says, her arms reaching upwards to grasp my shoulders. Her voice has an unfamiliar quality - quavering, uncertain, childlike. My absence, along with a popped fuse, my dad's vocal anger over same and her own unreliable bladder had short-circuited her wiring. Here she stood, semi-naked, shivering, in tears and unable to articulate exactly why.
This is the woman who prided herself on driving hundreds of miles in 1987, first to visit us in Virginia, then up the coast to her sister's in New Jersey. She balanced checkbooks to the penny, knew the best interest rates at any bank within 20 miles, changed her own flat tires. Her searching eyes and guileless face no longer fit a person who was once so frustratingly guarded even her husband didn't know what she was thinking.
Now she cannot remember simple words, or that it's dangerous to walk down the hall in the middle of the night by herself. Or that I actually live somewhere else.
"Now that Anne's home, I'm okay. Paul, isn't it great that Anne's come home?" This she offered after things calmed down that night.
But it's not so great. And I'm not really home. For two weeks, at 3 a.m. I'm on their porch, at their house full-time when not at work, but nowhere near home. After the two weeks, it's anyone's guess.
Home for me is a mile away, with the pets and daughters whose resentment at my absence grows daily, and who need me every bit as much, if not more. I could tell her this, but she won't remember in two weeks, anyway. And it'll be ugly enough without a few replays.
I suspect mother and I are now not really that different: imprisoned, entombed, damned to futures not of our own design.
At 3 a.m, I can think about all of this stuff and ponder the next move, and why my father and brother refuse to discuss what we'll do next, or what's happened to the wife and mother we used to know.
I can wonder whether or not the speech therapist and social worker were right when they said she probably can't ever be left alone again. That she might turn on the gas burner and forget it's running, or get in the car, drive away and forget where she's at.
At 3 a.m., when it's quiet and serene, I can look deep inside and wonder if I have what it takes to really give what I know they're going to ask from me, if I'm even capable of abandoning my own little life for them, and what it might cost, in all senses of the word, to see this nightmare through to its inevitable conclusion.
Monday, June 12, 2006
Ups and one down
My mom's medicine is working. She's nearly herself again, and, after getting antibiotics for the pneumonia they discovered I've had since June 2 - so am I. Nearly. But that was a week for the personal history books.
Where things go from here is anyone's guess. The Aricept medication might slow down the disease, or it might level-off eventually. At which point we'll have to face some harsh realities.
Speaking of, my brother's facing one of those right now. He's hell-bent on getting Power of Attorney over my parents, and refuses to face the fact dad chose me, instead. Knowing brother dear so well, it's likely he'll do something slimy and shystering to con all of us.
My sibling-less friends always mention how they wish they had a sister or brother to share all family things both great and troubling. Someone they could trust, who would share the burden and make times like this easier.
So do I.
With crisis averted for the time being, I'll be returning to political blogging in the coming weeks. Although, to be honest, I've not watched CNN or read Kos in several weeks. It may take a bit of time to catch back up with the larger picture.
Where things go from here is anyone's guess. The Aricept medication might slow down the disease, or it might level-off eventually. At which point we'll have to face some harsh realities.
Speaking of, my brother's facing one of those right now. He's hell-bent on getting Power of Attorney over my parents, and refuses to face the fact dad chose me, instead. Knowing brother dear so well, it's likely he'll do something slimy and shystering to con all of us.
My sibling-less friends always mention how they wish they had a sister or brother to share all family things both great and troubling. Someone they could trust, who would share the burden and make times like this easier.
So do I.
With crisis averted for the time being, I'll be returning to political blogging in the coming weeks. Although, to be honest, I've not watched CNN or read Kos in several weeks. It may take a bit of time to catch back up with the larger picture.
Wednesday, June 07, 2006
Game, set, match
After a battery of testing, they've determined my mom's problem isn't physical. As I suspected, they've decided she's most likely got Alzheimer's and is now being placed on a drug designed to reduce her paranoia and hallucinations.
Let me tell you: You just haven't lived until your mom calls to tell you that the county is putting up a fence around it, the lady in the bed next to hers was killed by the man who controls all the patients minds, and that you are an (expletive deleted) for not helping her. When it happens at 1 a.m., well then, what more is there?
My mother seldom swore. When she did, she would turn a little red and immediately apologize. The woman on the phone? She shrieks out words I didn't know she knew. And when not busy petting the birds on the floor of her hospital room, she's hating me for something I didn't know I did.
Where's the manual for this?
My mother left last Thursday morning and I'm not sure she's ever coming back. Now I understand why she spent nearly an entire summer crying, the year they diagnosed her own mother with Alzheimers. I'd never seen her cry much before that - maybe once or twice. Or since, until the past few days.
I understand her because now I am her - all those years ago, trying to parse the unfathomable, trying to recover from a total knock-out body slam.
Mood swings and abrupt personality changes are two of the first signs of Alzheimer's Disease. Usually, though, they're a bit more gradual. Unfortunately, trauma, injury and surgery can expedite matters.
And while I logically comprehend this. . .I can read it on a screen, or paper, for example, and none of the words are too big or too complex for my brain. . .I cannot find a way to accept it. To do much more than she did all those years ago. . .to do anything but feel tears roll down my face as I talk to one or another mean strangers inside the familiar shape and face of the kindhearted, good natured mother I've known for nearly 40 years.
I can't do this. The dinners, the laundry, the bills, the Drug Mart stuff, even the complete overhaul of their house; those I could - and did - do.
But I simply don't come equipped for the kind of pain and suffering this involves. Not without following her down the rabbit hole. Which, when I'm talking to her, seems almost a safer and happier place to be than this sudden, shocking, horrible reality.
Let me tell you: You just haven't lived until your mom calls to tell you that the county is putting up a fence around it, the lady in the bed next to hers was killed by the man who controls all the patients minds, and that you are an (expletive deleted) for not helping her. When it happens at 1 a.m., well then, what more is there?
My mother seldom swore. When she did, she would turn a little red and immediately apologize. The woman on the phone? She shrieks out words I didn't know she knew. And when not busy petting the birds on the floor of her hospital room, she's hating me for something I didn't know I did.
Where's the manual for this?
My mother left last Thursday morning and I'm not sure she's ever coming back. Now I understand why she spent nearly an entire summer crying, the year they diagnosed her own mother with Alzheimers. I'd never seen her cry much before that - maybe once or twice. Or since, until the past few days.
I understand her because now I am her - all those years ago, trying to parse the unfathomable, trying to recover from a total knock-out body slam.
Mood swings and abrupt personality changes are two of the first signs of Alzheimer's Disease. Usually, though, they're a bit more gradual. Unfortunately, trauma, injury and surgery can expedite matters.
And while I logically comprehend this. . .I can read it on a screen, or paper, for example, and none of the words are too big or too complex for my brain. . .I cannot find a way to accept it. To do much more than she did all those years ago. . .to do anything but feel tears roll down my face as I talk to one or another mean strangers inside the familiar shape and face of the kindhearted, good natured mother I've known for nearly 40 years.
I can't do this. The dinners, the laundry, the bills, the Drug Mart stuff, even the complete overhaul of their house; those I could - and did - do.
But I simply don't come equipped for the kind of pain and suffering this involves. Not without following her down the rabbit hole. Which, when I'm talking to her, seems almost a safer and happier place to be than this sudden, shocking, horrible reality.
Monday, June 05, 2006
The family garden
life just keeps getting harder
and it just keeps getting harder to hide
the darker it is around me
the easier it is to see inside
outside the glass
the whole world is magnified
and it's half an inch
from here to the other side
---Glass House, Ani DiFranco
I brought her roses yesterday, from her garden: pinks, blood reds, pristine whites. Careful to pull off the prickers after I cut them ("cut them long," my father insisted), I noticed the whites had the largest, most fierce thorns. Surprisingly, they were the easiest to remove.
Everyone's commenting on how great the flowers look and smell; she was always very proud of them.
We're all sitting in her room admiring the view from a wall of glass soaring high above the trees.
"Teta Meta, where did you get the beautiful roses?" my cousin Lanie asks.
"They came from my parents' yard. Aren't they pretty?"
Just like that, it hits like a slap. Her parents have been dead for decades.
They said this might be due to the anesthesia, earlier in the week when she was only marginally lucid, clutching the morphine pump like a talisman, slipping in and out of consciousness. But it's been several days since the anesthesia, and a day after the morphine was removed.
When the first frantic phone call came Thursday night, I didn't even consider this for the long haul. Of course she was confused: coming down from the surgery, hours after we'd all gone home, unable to reach anyone due to Fairview's collect-only long distance calling policy. Even when I got there at midnight, she was mostly clear. We chalked it up to bad dreams, good drugs and fear. Worried she might get scared again, I decided to stay the night.
Later, at 4 a.m., when she didn't remember her name, or mine, small clouds of doubt started to form in my mind.
But then other things came up. She walked her first agonizing steps. I had to leave for work at noon, only to return to the hospital at 5. She got better. I got sick. She started eating. I stopped. Basically life intervened, as it always does, and dad had a full list of things for me to do to ready the house for her eventual return.
The staff kept saying, "It might be from the medicine. We won't know until later. "
I watched her when she sat, fingers moving mindlessly across the sheet in her lap, a rhythmic gesture somewhere between typing and piano playing, her face an occasional blank stare. Why did it seem familiar?
Then I remembered her mother, my grandmother. She used to do that same thing with her fingers. . .back when she was first diagnosed. When she could still eat -- and move. When sometimes she seemed still herself. Before the Alzheimers slowly carved away her humanity.
It was trauma to her hip, caused by a fall, that brought out her symptoms all those years ago.
Surrounded by mingled scents of roses and bleach, I grasp my mother's hand and stare out over the treetops, willing myself to erase this memory before it takes hold, and failing.
