It has been interesting to see how various parties have responded to Mom's illness, which I liken in its impact to a hand grenade thrown into the middle of a church picnic.
Take my father. He is as controlling as it is possible to be. Always has been. Perfectionist, pin-neat, pays his bills the same day he gets them (even in the days before online banking). When he wanted to stop smoking, he threw the pack into the trash can, and that was it. End of story.
Perhaps because of his own steely willpower, life's messes, like illness or some of the more unsavory human weaknesses and oddities (addictions; greed; laziness; overweight) have always repulsed him. Particularly the illness part. As a child, I was admonished to "shake off" illness or given some horrible holistic cough syrupy stuff to swallow, which has been proven toxic decades later. He was hard pressed to visit his own mother as she lay, riddled senseless with strokes, for years at a nursing home. When we did go, he would hang back in the room, while I spoke to her, stroking her hand and trying to find out how much of her was left inside.
So when this dementia crap came down the pike, he basically went ballistic. Mom breaks things; she had a spate of leaving her purse at this or that restaurant; her dining habits have deteriorated. At first, he responded by trying to keep it all reigned in, an impossibility. He raged and roamed around, a maniac. At one point, he had us all searching their vacation home for a small plastic shower hook that had gone missing. Stuff like that.
But now, he's somehow stopping fighting it. Not only has he taken on an incredible load, like all of the driving, much of the food prep, and all of the household management -- he's there with the little things. Driving to the bigbox to pick up a pack of Depends. Buttering her bread, and making sure it gets to her mouth.
He's also finally attended to his health; losing weight, eating better. It's all rather staggering, and his behavior has been a big factor in keeping me sane for the past couple of months.
It also shows that people can change, no matter how late in life, and in the most mysterious and wonderful ways.
Friday, June 19, 2009
Tuesday, June 9, 2009
Adventures in the Big City
I took Mom to New York Saturday for my cousin's baby shower. Yes, it involved a drive through hellish traffic and a 25-minute subway ride each way to a destination fairly foreign to me -- Brooklyn! -- but it was a smallish affair, outdoors, and she wanted to go so badly I decided we would go for it. I mean, I wanted to go, too, but anything to do with babies, she's all over like white on rice.
Though Mom can get confused in crowds, particularly at restaurants, her behavior hasn't crossed over into outlandish or belligerent. She has, however, started to suffer from incontinence, making a city trip particularly challenging. I made sure we peed at every opportunity, from the car park to the porta-potty at the shower's outdoor location. She has trouble affixing her Safety Friends, as I call the pads, so I helped her out with that, which brought back uncomfortable flashbacks to my own puberty.
I did worry now and then about being beat up in the subway. She grinned a little too widely at the half-drunk dudes yukking it up over some lewd joke in a corner, and when a zaftig young lady wended her way across the lurching car, said a little too loudly: "She's a plumper. Fatty!"
Later, she leaned across to me and said, indicating a woman reading in Chinese across the aisle: "Does she understand that?!"
Mom always was a trooper when it came to travelling, though, and this day was no exception. Her gait may be unsteady, but she can run (and push) her way to an open subway door with the best of 'em. Later, inching our way across the George Washington Bridge, we both burst into song spontaneously, simultaneously:
Though Mom can get confused in crowds, particularly at restaurants, her behavior hasn't crossed over into outlandish or belligerent. She has, however, started to suffer from incontinence, making a city trip particularly challenging. I made sure we peed at every opportunity, from the car park to the porta-potty at the shower's outdoor location. She has trouble affixing her Safety Friends, as I call the pads, so I helped her out with that, which brought back uncomfortable flashbacks to my own puberty.
I did worry now and then about being beat up in the subway. She grinned a little too widely at the half-drunk dudes yukking it up over some lewd joke in a corner, and when a zaftig young lady wended her way across the lurching car, said a little too loudly: "She's a plumper. Fatty!"
Later, she leaned across to me and said, indicating a woman reading in Chinese across the aisle: "Does she understand that?!"
Mom always was a trooper when it came to travelling, though, and this day was no exception. Her gait may be unsteady, but she can run (and push) her way to an open subway door with the best of 'em. Later, inching our way across the George Washington Bridge, we both burst into song spontaneously, simultaneously:
All in all, a grand adventure.You can't hide your lyin' eyes
And your smile is a thin disguise
I thought by now you'd realize
There ain't no way to hide your lyin eyes
Sunday, June 7, 2009
Seeking a cause, any cause
Before Mom had a definite diagnosis of FLD, were looked for all sorts of reasons to explain her increasingly bizarre behavior. I didn't know about FTD, for one, so we wrote off dementia right away; Mom seemed far too young for it.I had read a while back that many supplements are contamined with substances like lead, as well as having quality issues like not containing promised amount of the promised nutrient. And for a while I was convinced that Mom had gotten manganese poisoning, which has been linked to Parkinson's, from the huge amounts of glucosamine supplements she took to keep her joints healthy -- unecessarily, as it turned out; she didn't have any more or less joint pain after she stopped taking the pills.
Maybe it was some heavy metal in the well water, which my father stubbornly refused to have tested for decades until they put the house on the market and -- surprise! -- arsenic. Weirder things have happened; apparently some poor folks who were happily living near a scenic lake in New Hampshire were sitting ducks for ALS thanks to some innocent-looking bacteria.
For a while I thought it might be all the bisphenol A lining her diet soda cans; she could consume three-four cans a day. It has caused problems with neural development in animal studies, after all.
Then, because so many of her symptoms suggested problems with hearing or loss of balance, we thought it might be a vascular issue. That turned out not to be the case, either. Drinking? She was long known for her hollow leg, but rarely got blind drunk (or even drank regularly, except for the period right after Grandmother died). Heredity? Nope, no other victims in the family, and I sure hope there won't be.
The illness has been, and remains, a reminder of the complete randomness of life, and how from day to day, from moment to moment, nothing stays the same.
Monday, June 1, 2009
Lost arts
One of the hardest things to take about Mom's illness is the loss of her considerable and varied capabilities. I saw my grandmothers slide into the fogginess of old age, and it was, truthfully, to be expected: They were already rather helpless individuals, relying on their spouses to earn and to fix and to transport.
My mother, though, was as capable as a longshoreman and as sharp as a knife. She was formidable.
She knew everything there was to know about insurance, as an award-winning, high-wage-garnering Prudential salesperson, and was a wizard with numbers. She managed the hectic front desk of my dad's auction business. She could wallpaper a room flawlessly, even if the paper was of an intricate design (to which the seamlessly prancing elephants in my dining room will attest). Need a diorama of the human body the night before the big science fair? She was your go-to girl. She could find her way anywhere; on any conveyance. On her first trip outside the U.S., she made her way around Paris the second day we were there, unassisted and not knowing the language, including a long trip on the Metro to return a train ticket.
But I think of the loss of many of her other capabilities as a collective loss to humanity. And I want you all to know what we're losing. She did the kinds of things people don't know how to do anymore. She could sew; really sew. As in: Make prom dresses. And elaborate costumes, say, for a high school production of Hello, Dolly. Her flower garden was and still is legendary in three towns for its size and exuberance. She was crafty, making stuffed animals for said aged grandmothers. The woman grew and canned her own vegetables, for chrissake. She made, and decorated and transported, a gorgeous, elegant, three-tiered wedding cake for 17-year-old cousin's shotgun wedding.
For my tenth wedding anniversary gift, Mom sewed a queen-size patchwork quilt, a "crazy" style, of exotic fabrics -- silks, velvets, heavy brocades -- that we chose together over a period of six months or so. If you don't know much about quilts, crazy means that no two pieces are alike -- so it's that much harder to fit them all together. Here's the kicker: Each piece of the quilt was embroidered, in a unique pattern entirely of her own design. The thing was jaw-droppingly exotic. Guests trooped up to my bedroom to have a look at it, some of them more than once. It took her six months to make; she worked on it for hours every single day. We joked back then that it had literally driven her crazy to make. Bad joke.
The thing is so heavy, so ungainly and yet delicate, that it sits, folded, in my linen closet. Its seams are already starting to unravel.
My mother, though, was as capable as a longshoreman and as sharp as a knife. She was formidable.
She knew everything there was to know about insurance, as an award-winning, high-wage-garnering Prudential salesperson, and was a wizard with numbers. She managed the hectic front desk of my dad's auction business. She could wallpaper a room flawlessly, even if the paper was of an intricate design (to which the seamlessly prancing elephants in my dining room will attest). Need a diorama of the human body the night before the big science fair? She was your go-to girl. She could find her way anywhere; on any conveyance. On her first trip outside the U.S., she made her way around Paris the second day we were there, unassisted and not knowing the language, including a long trip on the Metro to return a train ticket.
But I think of the loss of many of her other capabilities as a collective loss to humanity. And I want you all to know what we're losing. She did the kinds of things people don't know how to do anymore. She could sew; really sew. As in: Make prom dresses. And elaborate costumes, say, for a high school production of Hello, Dolly. Her flower garden was and still is legendary in three towns for its size and exuberance. She was crafty, making stuffed animals for said aged grandmothers. The woman grew and canned her own vegetables, for chrissake. She made, and decorated and transported, a gorgeous, elegant, three-tiered wedding cake for 17-year-old cousin's shotgun wedding.
For my tenth wedding anniversary gift, Mom sewed a queen-size patchwork quilt, a "crazy" style, of exotic fabrics -- silks, velvets, heavy brocades -- that we chose together over a period of six months or so. If you don't know much about quilts, crazy means that no two pieces are alike -- so it's that much harder to fit them all together. Here's the kicker: Each piece of the quilt was embroidered, in a unique pattern entirely of her own design. The thing was jaw-droppingly exotic. Guests trooped up to my bedroom to have a look at it, some of them more than once. It took her six months to make; she worked on it for hours every single day. We joked back then that it had literally driven her crazy to make. Bad joke.
The thing is so heavy, so ungainly and yet delicate, that it sits, folded, in my linen closet. Its seams are already starting to unravel.
Mom's dementia sinks in
We're only about two months in to my mothers diagnosis of dementia (frontal lobe dementia, to be specific), and it already feels like the sickness has taken over our family dynamics like some horrible, insidious monster that glops over and ravages everything it touches. Anybody see the old movie The Blob? That's what I'm talking about.
Her decline has been startlingly rapid. It took us a good six months to even think things were bad enough to see a doctor; we remarked on the behavioural changes for up to a year before that. And now, suddenly, she's unable to drive; to cook; to read a book.
While my mother seems blissfully unaware of her illness, and unembarrassed by her behaviors (like removing and cleaning her bridge of false teeth at a restaurant table), the rest of us are on edge in her presence. (Before we found out what was wrong, we were constantly pissed off by these behaviors, to be honest.) If we're visiting for a few days and have had time to adjust to the new paradigm, it's o.k.; but when we haven't seen her in a while, the air is rife with frantic, unsaid thoughts.
Me: She can't even respond to a simple question. She's worse. Does Dad realize this? Do the kids? Can she be left alone anymore? Even in my kitchen?
Dad: Do the kids realize she's worse? Is she, or is it just my imagination? Does she...[thought interrupted by the need to stop his wife from shoveling an entire bowl of ice cream into her mouth in a few spoonfuls]
Son-in-law: She's really gone.
We used to love to hang out together as a family, particularly at restaurants, and often with alcohol. These things are pretty much out now; she gets very confused by crowds and menus, and alcohol makes her symptoms worse. Next time they do visit, though, I'll have to take over monitoring for a while. My father needs someone else to help him cope, if only for a few hours or days. As an only child, spoiled and self-centered, I have had quite the rude awakening. About time, you're thinking. I agree.
Besides, I found out the penalties for letting down my guard. As I was trying to get the kids in their pj's and at the piano while my parents got ready to leave, Mom put on her son-in-law's sneakers and wore them home.
Her decline has been startlingly rapid. It took us a good six months to even think things were bad enough to see a doctor; we remarked on the behavioural changes for up to a year before that. And now, suddenly, she's unable to drive; to cook; to read a book.
While my mother seems blissfully unaware of her illness, and unembarrassed by her behaviors (like removing and cleaning her bridge of false teeth at a restaurant table), the rest of us are on edge in her presence. (Before we found out what was wrong, we were constantly pissed off by these behaviors, to be honest.) If we're visiting for a few days and have had time to adjust to the new paradigm, it's o.k.; but when we haven't seen her in a while, the air is rife with frantic, unsaid thoughts.
Me: She can't even respond to a simple question. She's worse. Does Dad realize this? Do the kids? Can she be left alone anymore? Even in my kitchen?
Dad: Do the kids realize she's worse? Is she, or is it just my imagination? Does she...[thought interrupted by the need to stop his wife from shoveling an entire bowl of ice cream into her mouth in a few spoonfuls]
Son-in-law: She's really gone.
We used to love to hang out together as a family, particularly at restaurants, and often with alcohol. These things are pretty much out now; she gets very confused by crowds and menus, and alcohol makes her symptoms worse. Next time they do visit, though, I'll have to take over monitoring for a while. My father needs someone else to help him cope, if only for a few hours or days. As an only child, spoiled and self-centered, I have had quite the rude awakening. About time, you're thinking. I agree.
Besides, I found out the penalties for letting down my guard. As I was trying to get the kids in their pj's and at the piano while my parents got ready to leave, Mom put on her son-in-law's sneakers and wore them home.
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