Jarawara
2010-06-25, 02:04 PM
Some friends of mine suggested I post this here. I feel like I'm just grabbing for attention, but I guess a little spotlight can't hurt in times like these.
This was written for another posting board, but I'll try and reformat anything necessary.
*~*
Well, the long, strange trip is finally ended.
Apologies for a (very) long post, I'm writing this to get it out of my system.
This is an update to a post I wrote back in November of 2002, about my mom. I had written that she was within days of death, perhaps hours.
She had been a vibrant and active person, ambitious and confident in her abilities. She had been a grocery clerk, a union organizer, a long-haul trucker, a small business owner, and the best damn home gardener in western washington.
She considered herself 'retired', though with the workload she put upon herself, that doesn't seem to be an appropriate descriptor. She also was still actively pursuing a home-based business. Her garden, as I mentioned, was her pride and joy. I remember times where we went to the county fair and laughed at the 'prizewinning' cornstalks which stood two feet smaller than our average, or veggies half the size of what Mom was feeding us (and all our neighbors). My favorite photo is of the two of us holding up a cabbage that is easily three times the size of my head, and a leafpattern that both of us could hide behind fully concealed.
And then, for reasons that still escape me today, she just... quit.
It's possible that she tricked herself into an unproductive work pattern. Her business required extra effort in the spring, while working in the late summer usually wasn't worth the effort. But she'd focus on the garden in the spring, letting the business slide, and come harvest time, she's realize the business was lagging and focus on that, to the point that the garden went to waste. As a result, neither endeavors were successful. Maybe that was the cause of her decline. Maybe that was simply the first symptom.
She was a life-long smoker, a life-long drinker. Neither of these habits were particularly bad on her, because she was just too busy to overdo them. She'd be in the garden with a cigarette and a glass of wine, she'd take a puff, take a sip, then go pick an entire basket of beans. Take a puff, take a sip, then go weed and thin a couple of rows of lettuce. Not much drinking or smoking there, with so much work to be done.
But she gave up all her activities, and sat in front of the TV. She'd take a puff, take a sip... and take another puff, and take another sip.
And take a puff, and take a drink, and take a puff, and take a drink, and take a puff, and take a drink and take a puff and take a drink and take a puff and take a... ok, perhaps I still have some lingering anger on this issue.
Soon the TV was off, and she'd just sit in the dark room, surrounded by a palor of smoke, unable to walk steady. She told a friend she was just 'waiting to die'. She'd refuse all attempts to go to the hospital, and we begun to suspect she knew something that she wasn't letting us know about. Cancer, perhaps? Or worse?
Her weight began to fall. Her optimal weight was 140 pounds, but it had dropped to 120, then down to 110. Her eating declined, her ability to concentrate declined, her driving... became downright dangerous. We took her keys away, and she gave up cooking other than the occasional cup of noodles. (We have a gas-stove, and she fried the hair off her forehead when she didn't notice it hadn't ignited properly.)
Her iron will persisted though - every time we'd set a visit to a doctor, she'd get up, even crawling if she had to, to call and cancel the appointment. She began to store the wine next to the couch, so she didn't have to go all the way to the refridgerator to fill her glass.
Her weight, which had held for awhile just above the 100 mark, finally broke through and began to plummet for real. Eating... simply ceased for all practical purposes. Wine was providing all her nourishment. She became disoriented, delusional, and finally incoherent of her surroundings.
They say that 'books are food for the mind'. This is utter bull****. FOOD is food for the mind; without it, the brain becomes malnourished and ceases to function properly. She was unable to prevent us from taking her to the doctor, and in fact was unaware she was there.
Her weight, fully clothed, clocked in at 83 pounds. Her last meal, for thanksgiving, was a single teaspoon of finely chopped turkey, a single teaspoon of stuffing, and two teaspoons of mashed potatoes. She ate only half her meal, and promptly threw it up. It had been the only thing she had eaten in days.
I posted her condition in November of 2002, and it was obvious to all that her end was days away at best. I didn't expect her to last the night. I thank you all again for the well-wishes I had received during that time.
And then... she got better.
What a wholly inadequate description. 'She got better'.
Now understand, she never returned to normal - which as it happens is the best thing that ever happened to her.
You see, the doctor's first response was to put her on an appetite stimulant, and get her eating again. As food started to go in, the body began to start up the various systems one by one - including the brain. But there was damage. She had massive memory loss, and really wasn't the same person as before. She didn't recognize us, though she could recall people from earlier times (and later began to associate us with those 'earlier people', thus at least giving her some memory-history of us).
She also forgot two other, rather important items, namely...
1) ... that she was a lifelong smoker.
2) ... that she was a lifelong drinker.
She went through nicotene fits, and pretty nasty DT's, and for awhile she still so out of it that she tried to go through the motions of smoking but wasn't aware that we had taken her matches from her. Eventually she quit trying, and forgot about them. From that moment on, she never once again asked for a cigarette or for wine.
And at that point I found out something about her: Take away the nicotene and the alcohol, and it turns out that Mom was a fundamentally happy person. She was diminished, that was for certain, but what remained was an entirely different person that who I grew up with. She was happy to just exist, to walk around in the yard, to watch tv, to do housechores, to eat chocolate. (She developed a raging sweettooth, and so chocolate can be credited in bring her weight back up to 140 and beyond).
We also learned another detail, that emerged over the early months of 2003. A dreaded word in this family, given the history on my mother's side. Alzheimer's.
We had been through this before, her mother had Alzheimers, one of the first confirmed diagnosis of it in Washington back when it was a 'new disease' in the 80's. It's still almost impossible to confirm a diagnosis, not until the autopsy can you absolutely confirm it. But the signs became clearer as the months went by. Perhaps she had seen the signs earlier? Perhaps that's why she had shut down, had 'quit' in the mid-90's? I will never know.
But for 2003 and 2004, I had my mom back, in some ways better than she had ever been. She had no memory of her work-life, could not be trusted to cook or drive, or much of anything. But she no longer had her fits of frustration, her depression, her anger, and her general sense of sadness. I had once heard my grandmother described as being 'happiest when she was sad' (meaning that to remain in her comfort zone required her to be sad - to be happy required too much effort to change). I had applied that description to my mother, ammending it to her being 'happiest when she was morose, or enraged'. But no longer. Now she was happiest... pretty much all the time, for any reason.
We'd walk around the yard (we have a big yard), and look at the flowers we (and later just I) had planted. She'd pick some and put them in a vase. Later, she'd pick some and set them on the counter, having forgotten what to do with them. Later, she'd pick some and carry them around, and try to eat them. We had to remove all poisonous plants.
She was healthy as a horse. Most Alzheimer's patients die early because of unrelated causes. They get frail, fall and break a hip, or become malnourished, not able to care for themselves. We kept her well-fed and well-protected, and she was active. She could outdistance a pair of 40 year olds, as we learned when she walked out to the road and got lost. A local couple saw her and guessed there was something wrong - but couldn't keep up with her. We put up a gate to prevent her from escaping again.
Alzheimer's tends to magnify personality traits. I was afraid that her lifelong unhappiness would be magnified, but that had been the alcohol, not her. She instead became supremely happy, playful, inquisitive. She liked to inspect things, and take them apart. It's kinda like regression back to being a child - a child would take things apart to see how they work. Except that she didn't care how they worked, she just wanted to take them apart. And anything she did learn would be gone within minutes anyway.
She took apart the remote control. She took apart the stereo. She took apart the stove (multiple times, we had to put a cover over the controls, and she took apart the cover). She took apart the toilet - with the water still in it. That was messy. We put locks on critical shelves and storage units, and sealed off parts of the house.
As an aside, she fortunately never got interested in my game of F&E, or the entire Klingon fleet would have surely been taken apart. And probably eaten.
As I said before, Alzheimer's tends to magnify personality traits, and we mostly had seen the best traits of her brought to the surface. But Alzheimer's ultimately destroys the personality. Short-term memory goes first. Then long-term memory. Then the logic circuits. Then, practical memory. She became incontinent, simply because she forgot in the existance of bathrooms. She had no idea where they were, or what to do when she got there. She ultimately became unaware of the 'effects' of this lack of knowledge, with rather unfortunate results. We brought in a nurse to help bathe her, and vowed to put in new carpets when it was all over. (Sorry for being graphic, but hey, I'm writing this for me, not for you!) :smalltongue:
Her weight had been declining again, but she was still eating well. She had lost her teeth years ago, but we made sure she had well-cooked veggies and she had mostly forgotten any particular preferences. She ate pretty much anything we put in front of her, though you had to do it right. You can't just hand her food, she wouldn't know what it is. You had to sit her down, put the plate in her lap, hand her the fork. That's the only way she's associate the actions with what memory she had remaining. Later, she dispensed with the fork, but she still ate everything off her plate. We vowed to fix her only finger food.
Hospitals are good for what they do, which is repair damage and identify (and hopefully cure) illness. They are crap, however, at patient care. Mom got the flu and got fluid in her lungs, so she spent a few nights at the hospital. They cured the illness, but kept wanting to keep her there, because "she seemed rather disoriented". Well, duh. They wouldn't believe us when we told them that *was* the baseline. Plus, she wasn't eating right. Well, double-duh! They put food on her tray with those nifty heat-retaining lids on - of course she had no idea what those were and never touched them. When they opened it up for her... it was a giant chicken patty on a bun. DUH! She had no teeth! Finally we go in to visit, they tell us she's still not eating. I barge on past and see the food set to her side - this time at least it was mashed potatoes and stuff - and I set it in her lap and hand her the spoon. She ate the whole plate with gusto, and we took her home.
Logical speech was gone by 2007. Coherent speech was gone by late 2008. She communicated in grunts and natters. But she didn't really communicate. Unlike a stroke, in which the patient tries to talk but cannot form the proper words, she no longer had coherent thoughts - and near the end, probably had few thoughts at all.
She would have highs and lows, in a very regular, repeating pattern. She'd wake up, stay quiet for awhile, then rouse herself and go looking for something to take apart. She was still very strong - she decided to take apart an ice scrapper and so she broke the thing in half - and then broke one of those peices in half again. That's thick plastic! I don't think I could do that. Then after being up for, oh, two or three days, she'd start to get frantic, driven by some internal need to keep moving. She'd carry around random things, setting some down and picking up other stuff, collecting them all on the couch. Then she'd finally crash, fall asleep, and sleep for two to four days straight. We'd pick up the eclectric collection of items and resort them back to their proper locations. And then the cycle would start anew.
About a month ago... she forgot how to walk. That's about the only way I can describe it. She didn't eat for several days, mostly sleeping. This was also concerning, as normally even in her down-time we can wake her up to feed her before she went back to sleep - but she seemed to have lost her appetite. We took her to the doctors for that, but by that time she was already on the way back 'up'. She drank a bunch of water, ate three full meals that day, and starting roaring on to her 'up' cycle. But she never actually stood up. She never even tried. It's like she just forgot what her legs were for.
And this heralded the beginning of the end. Each 'up' cycle didn't go as high, each down cycle left her sleeping longer, eating less. About two weeks ago she 'forgot' how to eat. She patty-pawed the food, but didn't associate it with anything. She was still strong-willed, you couldn't put food or water in her mouth, she'd fight you all the way. She still reached out for glasses of juice, but in the dueness of time, that too came to an end.
We then got to learn the ugly truth of exactly how long a person can last without any food or water. I thought it would last only three days. It took eleven.
She never was in much discomfort. Perhaps there were other issues going on, we didn't bother with an autopsy. Perhaps she had lost her appetite due to some other internal issue. Mind you, we could have saved her - we could have put her on feeding tubes and a saline-drip, but really, what's the point? She would not have wanted this. This was not life. We had Hospice there to assist, and gave her morphine when her heart raced or her breathing was troubled. Mostly she just slept.
And finally, this long strange trip we've been on came to an end, at 8:12 PM, May 29th.
Mom, I'm glad I got to know the person you were underneath the alcohol and the nicotene. I'm glad I got to share my time with you these last few years. I hope now you can rest. And... maybe disassemble the pearly gates, if you feel like it.
Allene Rae Howard, 1941-2010, R.I.P.
This was written for another posting board, but I'll try and reformat anything necessary.
*~*
Well, the long, strange trip is finally ended.
Apologies for a (very) long post, I'm writing this to get it out of my system.
This is an update to a post I wrote back in November of 2002, about my mom. I had written that she was within days of death, perhaps hours.
She had been a vibrant and active person, ambitious and confident in her abilities. She had been a grocery clerk, a union organizer, a long-haul trucker, a small business owner, and the best damn home gardener in western washington.
She considered herself 'retired', though with the workload she put upon herself, that doesn't seem to be an appropriate descriptor. She also was still actively pursuing a home-based business. Her garden, as I mentioned, was her pride and joy. I remember times where we went to the county fair and laughed at the 'prizewinning' cornstalks which stood two feet smaller than our average, or veggies half the size of what Mom was feeding us (and all our neighbors). My favorite photo is of the two of us holding up a cabbage that is easily three times the size of my head, and a leafpattern that both of us could hide behind fully concealed.
And then, for reasons that still escape me today, she just... quit.
It's possible that she tricked herself into an unproductive work pattern. Her business required extra effort in the spring, while working in the late summer usually wasn't worth the effort. But she'd focus on the garden in the spring, letting the business slide, and come harvest time, she's realize the business was lagging and focus on that, to the point that the garden went to waste. As a result, neither endeavors were successful. Maybe that was the cause of her decline. Maybe that was simply the first symptom.
She was a life-long smoker, a life-long drinker. Neither of these habits were particularly bad on her, because she was just too busy to overdo them. She'd be in the garden with a cigarette and a glass of wine, she'd take a puff, take a sip, then go pick an entire basket of beans. Take a puff, take a sip, then go weed and thin a couple of rows of lettuce. Not much drinking or smoking there, with so much work to be done.
But she gave up all her activities, and sat in front of the TV. She'd take a puff, take a sip... and take another puff, and take another sip.
And take a puff, and take a drink, and take a puff, and take a drink, and take a puff, and take a drink and take a puff and take a drink and take a puff and take a... ok, perhaps I still have some lingering anger on this issue.
Soon the TV was off, and she'd just sit in the dark room, surrounded by a palor of smoke, unable to walk steady. She told a friend she was just 'waiting to die'. She'd refuse all attempts to go to the hospital, and we begun to suspect she knew something that she wasn't letting us know about. Cancer, perhaps? Or worse?
Her weight began to fall. Her optimal weight was 140 pounds, but it had dropped to 120, then down to 110. Her eating declined, her ability to concentrate declined, her driving... became downright dangerous. We took her keys away, and she gave up cooking other than the occasional cup of noodles. (We have a gas-stove, and she fried the hair off her forehead when she didn't notice it hadn't ignited properly.)
Her iron will persisted though - every time we'd set a visit to a doctor, she'd get up, even crawling if she had to, to call and cancel the appointment. She began to store the wine next to the couch, so she didn't have to go all the way to the refridgerator to fill her glass.
Her weight, which had held for awhile just above the 100 mark, finally broke through and began to plummet for real. Eating... simply ceased for all practical purposes. Wine was providing all her nourishment. She became disoriented, delusional, and finally incoherent of her surroundings.
They say that 'books are food for the mind'. This is utter bull****. FOOD is food for the mind; without it, the brain becomes malnourished and ceases to function properly. She was unable to prevent us from taking her to the doctor, and in fact was unaware she was there.
Her weight, fully clothed, clocked in at 83 pounds. Her last meal, for thanksgiving, was a single teaspoon of finely chopped turkey, a single teaspoon of stuffing, and two teaspoons of mashed potatoes. She ate only half her meal, and promptly threw it up. It had been the only thing she had eaten in days.
I posted her condition in November of 2002, and it was obvious to all that her end was days away at best. I didn't expect her to last the night. I thank you all again for the well-wishes I had received during that time.
And then... she got better.
What a wholly inadequate description. 'She got better'.
Now understand, she never returned to normal - which as it happens is the best thing that ever happened to her.
You see, the doctor's first response was to put her on an appetite stimulant, and get her eating again. As food started to go in, the body began to start up the various systems one by one - including the brain. But there was damage. She had massive memory loss, and really wasn't the same person as before. She didn't recognize us, though she could recall people from earlier times (and later began to associate us with those 'earlier people', thus at least giving her some memory-history of us).
She also forgot two other, rather important items, namely...
1) ... that she was a lifelong smoker.
2) ... that she was a lifelong drinker.
She went through nicotene fits, and pretty nasty DT's, and for awhile she still so out of it that she tried to go through the motions of smoking but wasn't aware that we had taken her matches from her. Eventually she quit trying, and forgot about them. From that moment on, she never once again asked for a cigarette or for wine.
And at that point I found out something about her: Take away the nicotene and the alcohol, and it turns out that Mom was a fundamentally happy person. She was diminished, that was for certain, but what remained was an entirely different person that who I grew up with. She was happy to just exist, to walk around in the yard, to watch tv, to do housechores, to eat chocolate. (She developed a raging sweettooth, and so chocolate can be credited in bring her weight back up to 140 and beyond).
We also learned another detail, that emerged over the early months of 2003. A dreaded word in this family, given the history on my mother's side. Alzheimer's.
We had been through this before, her mother had Alzheimers, one of the first confirmed diagnosis of it in Washington back when it was a 'new disease' in the 80's. It's still almost impossible to confirm a diagnosis, not until the autopsy can you absolutely confirm it. But the signs became clearer as the months went by. Perhaps she had seen the signs earlier? Perhaps that's why she had shut down, had 'quit' in the mid-90's? I will never know.
But for 2003 and 2004, I had my mom back, in some ways better than she had ever been. She had no memory of her work-life, could not be trusted to cook or drive, or much of anything. But she no longer had her fits of frustration, her depression, her anger, and her general sense of sadness. I had once heard my grandmother described as being 'happiest when she was sad' (meaning that to remain in her comfort zone required her to be sad - to be happy required too much effort to change). I had applied that description to my mother, ammending it to her being 'happiest when she was morose, or enraged'. But no longer. Now she was happiest... pretty much all the time, for any reason.
We'd walk around the yard (we have a big yard), and look at the flowers we (and later just I) had planted. She'd pick some and put them in a vase. Later, she'd pick some and set them on the counter, having forgotten what to do with them. Later, she'd pick some and carry them around, and try to eat them. We had to remove all poisonous plants.
She was healthy as a horse. Most Alzheimer's patients die early because of unrelated causes. They get frail, fall and break a hip, or become malnourished, not able to care for themselves. We kept her well-fed and well-protected, and she was active. She could outdistance a pair of 40 year olds, as we learned when she walked out to the road and got lost. A local couple saw her and guessed there was something wrong - but couldn't keep up with her. We put up a gate to prevent her from escaping again.
Alzheimer's tends to magnify personality traits. I was afraid that her lifelong unhappiness would be magnified, but that had been the alcohol, not her. She instead became supremely happy, playful, inquisitive. She liked to inspect things, and take them apart. It's kinda like regression back to being a child - a child would take things apart to see how they work. Except that she didn't care how they worked, she just wanted to take them apart. And anything she did learn would be gone within minutes anyway.
She took apart the remote control. She took apart the stereo. She took apart the stove (multiple times, we had to put a cover over the controls, and she took apart the cover). She took apart the toilet - with the water still in it. That was messy. We put locks on critical shelves and storage units, and sealed off parts of the house.
As an aside, she fortunately never got interested in my game of F&E, or the entire Klingon fleet would have surely been taken apart. And probably eaten.
As I said before, Alzheimer's tends to magnify personality traits, and we mostly had seen the best traits of her brought to the surface. But Alzheimer's ultimately destroys the personality. Short-term memory goes first. Then long-term memory. Then the logic circuits. Then, practical memory. She became incontinent, simply because she forgot in the existance of bathrooms. She had no idea where they were, or what to do when she got there. She ultimately became unaware of the 'effects' of this lack of knowledge, with rather unfortunate results. We brought in a nurse to help bathe her, and vowed to put in new carpets when it was all over. (Sorry for being graphic, but hey, I'm writing this for me, not for you!) :smalltongue:
Her weight had been declining again, but she was still eating well. She had lost her teeth years ago, but we made sure she had well-cooked veggies and she had mostly forgotten any particular preferences. She ate pretty much anything we put in front of her, though you had to do it right. You can't just hand her food, she wouldn't know what it is. You had to sit her down, put the plate in her lap, hand her the fork. That's the only way she's associate the actions with what memory she had remaining. Later, she dispensed with the fork, but she still ate everything off her plate. We vowed to fix her only finger food.
Hospitals are good for what they do, which is repair damage and identify (and hopefully cure) illness. They are crap, however, at patient care. Mom got the flu and got fluid in her lungs, so she spent a few nights at the hospital. They cured the illness, but kept wanting to keep her there, because "she seemed rather disoriented". Well, duh. They wouldn't believe us when we told them that *was* the baseline. Plus, she wasn't eating right. Well, double-duh! They put food on her tray with those nifty heat-retaining lids on - of course she had no idea what those were and never touched them. When they opened it up for her... it was a giant chicken patty on a bun. DUH! She had no teeth! Finally we go in to visit, they tell us she's still not eating. I barge on past and see the food set to her side - this time at least it was mashed potatoes and stuff - and I set it in her lap and hand her the spoon. She ate the whole plate with gusto, and we took her home.
Logical speech was gone by 2007. Coherent speech was gone by late 2008. She communicated in grunts and natters. But she didn't really communicate. Unlike a stroke, in which the patient tries to talk but cannot form the proper words, she no longer had coherent thoughts - and near the end, probably had few thoughts at all.
She would have highs and lows, in a very regular, repeating pattern. She'd wake up, stay quiet for awhile, then rouse herself and go looking for something to take apart. She was still very strong - she decided to take apart an ice scrapper and so she broke the thing in half - and then broke one of those peices in half again. That's thick plastic! I don't think I could do that. Then after being up for, oh, two or three days, she'd start to get frantic, driven by some internal need to keep moving. She'd carry around random things, setting some down and picking up other stuff, collecting them all on the couch. Then she'd finally crash, fall asleep, and sleep for two to four days straight. We'd pick up the eclectric collection of items and resort them back to their proper locations. And then the cycle would start anew.
About a month ago... she forgot how to walk. That's about the only way I can describe it. She didn't eat for several days, mostly sleeping. This was also concerning, as normally even in her down-time we can wake her up to feed her before she went back to sleep - but she seemed to have lost her appetite. We took her to the doctors for that, but by that time she was already on the way back 'up'. She drank a bunch of water, ate three full meals that day, and starting roaring on to her 'up' cycle. But she never actually stood up. She never even tried. It's like she just forgot what her legs were for.
And this heralded the beginning of the end. Each 'up' cycle didn't go as high, each down cycle left her sleeping longer, eating less. About two weeks ago she 'forgot' how to eat. She patty-pawed the food, but didn't associate it with anything. She was still strong-willed, you couldn't put food or water in her mouth, she'd fight you all the way. She still reached out for glasses of juice, but in the dueness of time, that too came to an end.
We then got to learn the ugly truth of exactly how long a person can last without any food or water. I thought it would last only three days. It took eleven.
She never was in much discomfort. Perhaps there were other issues going on, we didn't bother with an autopsy. Perhaps she had lost her appetite due to some other internal issue. Mind you, we could have saved her - we could have put her on feeding tubes and a saline-drip, but really, what's the point? She would not have wanted this. This was not life. We had Hospice there to assist, and gave her morphine when her heart raced or her breathing was troubled. Mostly she just slept.
And finally, this long strange trip we've been on came to an end, at 8:12 PM, May 29th.
Mom, I'm glad I got to know the person you were underneath the alcohol and the nicotene. I'm glad I got to share my time with you these last few years. I hope now you can rest. And... maybe disassemble the pearly gates, if you feel like it.
Allene Rae Howard, 1941-2010, R.I.P.