Martha H
02-26-2006, 02:12 PM
Hi Caregivers!
Isn't it interesting how AD patients can pretend to be OK.
I had a conversation this morning with a new friend who also took care of her AD parent for many years. She told me her father used to keep any conversation on a neutral level: ex: "isn't it beautiful how the blue in the wallpaper picks up the blue in the rug."
Now anyone hearing this will think,' wow, sharp as a tack!'
But he neither knew his own name nor that this was his daughter he was speaking to.
He wound up in an NH too, as usual, and died there at a very old age.
Another person - who works for a doctor - told me that in this state, Medicaid is retroactive to the day you first became eligible. So if it is the same in NY, if Mom gets onto it late, the NH bills from April will still be paid by them, only late. She told me do not pay anything with your own money. You will never get that back.
I enjoy having the support of many people in my new church who have 'been there, done that' with Alzheimer's disease. I am meeting more and more of them (us). This disease seems to be very widespread. How sad!
I'm sure you can all come up with examples of how your loved one fooled the public! My Mom, when asked what she had for lunch, would make up a delicious menu. For the last few months of her stay at home with me, she always said chicken, boiled potatoes, salad, cake, and juice. EVERY day. The Center printed a daily menu on their monthly calendar. Once I said, 'but it says here 'corned beef."' No no, that was YESTERDAY! she triumphed .. 'they never stick to their own plan." It all sounded so logical, except I knew it was all made up, her attempt to APPEAR normal as her memory got worse and worse.
I'd love to read some of your experiences along this line.
Love,
Martha
Isn't it interesting how AD patients can pretend to be OK.
I had a conversation this morning with a new friend who also took care of her AD parent for many years. She told me her father used to keep any conversation on a neutral level: ex: "isn't it beautiful how the blue in the wallpaper picks up the blue in the rug."
Now anyone hearing this will think,' wow, sharp as a tack!'
But he neither knew his own name nor that this was his daughter he was speaking to.
He wound up in an NH too, as usual, and died there at a very old age.
Another person - who works for a doctor - told me that in this state, Medicaid is retroactive to the day you first became eligible. So if it is the same in NY, if Mom gets onto it late, the NH bills from April will still be paid by them, only late. She told me do not pay anything with your own money. You will never get that back.
I enjoy having the support of many people in my new church who have 'been there, done that' with Alzheimer's disease. I am meeting more and more of them (us). This disease seems to be very widespread. How sad!
I'm sure you can all come up with examples of how your loved one fooled the public! My Mom, when asked what she had for lunch, would make up a delicious menu. For the last few months of her stay at home with me, she always said chicken, boiled potatoes, salad, cake, and juice. EVERY day. The Center printed a daily menu on their monthly calendar. Once I said, 'but it says here 'corned beef."' No no, that was YESTERDAY! she triumphed .. 'they never stick to their own plan." It all sounded so logical, except I knew it was all made up, her attempt to APPEAR normal as her memory got worse and worse.
I'd love to read some of your experiences along this line.
Love,
Martha
Sponsor
Sandyspen
02-26-2006, 02:34 PM
Great Topic Martha!
When we took Mom's car away, we told her that she didn't have a drivers license anymore. She said, "OH, it doesn't matter. I spoke to a friend who works for DMV and he says that I've had one for so long, I don't need one to drive anymore."
Recently, she was complaining about her missing car again and told me that 'after we took her car away, she drove all the other people's cars who lived in her adult-community. They all thought she was a delightful driver and couldn't understand why her evil children took her car.' (Now, these are the same people who called me daily about her inability to care for herself.)
When we took Mom's car away, we told her that she didn't have a drivers license anymore. She said, "OH, it doesn't matter. I spoke to a friend who works for DMV and he says that I've had one for so long, I don't need one to drive anymore."
Recently, she was complaining about her missing car again and told me that 'after we took her car away, she drove all the other people's cars who lived in her adult-community. They all thought she was a delightful driver and couldn't understand why her evil children took her car.' (Now, these are the same people who called me daily about her inability to care for herself.)
LuvMyLilDoggie
02-26-2006, 03:03 PM
My dad once took his car and left my sister's house in a rage saying that he was going home. After 12 hours and calling back and forth and calling state police from Alabama to Illinois, dad showed up at my sister's doorstep, right where he started 12 hours earlier.
When asked where he'd been, he said "I just went for a ride". When told that he had been gone for twelve hours and that he'd scared us all half to death, he said "I was going to come home but I decided to go back when I got to Nashville." When told that Nashville is only a 3-3 1/2 hour drive from my sister's house and that it would only have taken 6, possibly 7 hours to go there and back, he said "But I stopped there to eat". When told that still didn't account for the 5-6 hours that were a mystery, he said "I went sightseeing and to the Grand Ole Opry". The Grand Ole Opry was closed at that time so there was no way he could have been there but it sounded really convincing. I mean he had a johnny on the spot answer for every question we asked.
To this day we don't know where he was or what he was doing. We're just grateful that nothing serious happened to him or anyone else during the unaccounable 12 hour mystery.
Love, Barb
When asked where he'd been, he said "I just went for a ride". When told that he had been gone for twelve hours and that he'd scared us all half to death, he said "I was going to come home but I decided to go back when I got to Nashville." When told that Nashville is only a 3-3 1/2 hour drive from my sister's house and that it would only have taken 6, possibly 7 hours to go there and back, he said "But I stopped there to eat". When told that still didn't account for the 5-6 hours that were a mystery, he said "I went sightseeing and to the Grand Ole Opry". The Grand Ole Opry was closed at that time so there was no way he could have been there but it sounded really convincing. I mean he had a johnny on the spot answer for every question we asked.
To this day we don't know where he was or what he was doing. We're just grateful that nothing serious happened to him or anyone else during the unaccounable 12 hour mystery.
Love, Barb
BarbaraH
02-26-2006, 03:12 PM
We noticed that my mother would comment on anything she could see and identify or read. That was happening even before she forgot so much that we were aware of her AD.
It is scary!
Cheers! Barbara :)
It is scary!
Cheers! Barbara :)
janeslk
02-26-2006, 04:11 PM
We noticed that my mother would comment on anything she could see and identify or read. That was happening even before she forgot so much that we were aware of her AD.
It is scary!
Cheers! Barbara :)
Barbara, I am wondering when my FIL will no longer be able to read or write. He can still read and he can write. However, he was asked to write his name the other day and he wrote a first name that was different than his own. He got the last name right, however.
Jane
It is scary!
Cheers! Barbara :)
Barbara, I am wondering when my FIL will no longer be able to read or write. He can still read and he can write. However, he was asked to write his name the other day and he wrote a first name that was different than his own. He got the last name right, however.
Jane
BarbaraH
02-26-2006, 04:54 PM
Hi Jane,
Interesting to me was the astonishing fact that my mother read a lotion bottle label to me a year after she forgot how to walk and just 8 months before she died. She hadn't been able to read for about 2 years before that. I will say she was pleased with herself but had no idea what the meaning was of what she'd read.
The brain is mysterious.
Cheers! Barbara :)
Interesting to me was the astonishing fact that my mother read a lotion bottle label to me a year after she forgot how to walk and just 8 months before she died. She hadn't been able to read for about 2 years before that. I will say she was pleased with herself but had no idea what the meaning was of what she'd read.
The brain is mysterious.
Cheers! Barbara :)
ToBeFreeToRoam
02-27-2006, 01:59 AM
Hi all,
My dad does not tell stories. When he does not know what to say or just cannot keep up with or understand the conversation, he mainly just sits quietly. And sometimes when he is trying to tell me or someone else something - he starts off, and then says "I lost it". Meaning he forgot part of what he had to tell us.
As for my dads handwriting. It always seems the last thing to get worse! When he was on 5 mg Aricept, after 1 yr. it stopped helping him stay the same. Then I could tell he was going down by his handwriting, among other ways. Much, much smaller and not signing his name in the correct place on a check. We had a lot of voided checks for a while!
Then we put him on 10 mg. Aricept and his handwriting got better. A little larger and right on the line. Well, I expected the 10 mg., not to work for a whole year and now, his handwriting is starting to get worse and not quite in the correct place. So, that will be it for the medicine. We will probably give him the Aricept, until his dr. says to stop, or when he moves to a home.
I would think that when an Alzheimers person is in a care place, they probably tell more stories (lies) because most of the time, it is to people they do not know really well?!
Take care yall.
Love, Wannabe
My dad does not tell stories. When he does not know what to say or just cannot keep up with or understand the conversation, he mainly just sits quietly. And sometimes when he is trying to tell me or someone else something - he starts off, and then says "I lost it". Meaning he forgot part of what he had to tell us.
As for my dads handwriting. It always seems the last thing to get worse! When he was on 5 mg Aricept, after 1 yr. it stopped helping him stay the same. Then I could tell he was going down by his handwriting, among other ways. Much, much smaller and not signing his name in the correct place on a check. We had a lot of voided checks for a while!
Then we put him on 10 mg. Aricept and his handwriting got better. A little larger and right on the line. Well, I expected the 10 mg., not to work for a whole year and now, his handwriting is starting to get worse and not quite in the correct place. So, that will be it for the medicine. We will probably give him the Aricept, until his dr. says to stop, or when he moves to a home.
I would think that when an Alzheimers person is in a care place, they probably tell more stories (lies) because most of the time, it is to people they do not know really well?!
Take care yall.
Love, Wannabe
Beginning
02-27-2006, 08:24 AM
ToBeFreeToRoam: My husband does the exact same thing...even uses the "I lost it" phrase. Same thing with his checks too. I'm always amazed when I read someone else's posting and see that someone else is having the same experiences. We're at the point now where my husband has trouble talking on the phone (the AD expert told us that it's harder for patients to keep track of voices and conversations when they can't see the speaker). He'll always answer the phone but will pass it to someone else as quickly as possible, or he might have a confusing conversation. If it's a telemarketer or something that he doesn't think is important, he just hangs up (sorry to telemarketers -- he can't be polite). The kids and I are using our cell phone numbers as our house telephone number now, to minimize calls to the house.
ToBeFreeToRoam
02-27-2006, 04:27 PM
Hi Beginning,
That is something (or maybe more close to the norm), that they use the same phrase and the handwriting thing. My mom answers the phone 1st, if she can. Then she will let my dad talk to people like me, my sister, his friends and that is about it. If any Grandkids call, he talks to them too and his brother! When all this first started, many years ago, my dad would answer the phone and order things, or change things. Like he changed to AT&T, years ago, from SWBell Telephone. I hear that the companies have joined forces, now. But, it was hard using them in the beginning!
So, she tries to screen the sales calls!!! My dad does the best, when the person he is talking to is sitting right next to him or pretty close. And when there are only 2 or 3 people in a room. He just cannot keep track of more than one conversation - if that! My mother, my sister and I, among a few others, know how to talk to him. So, that he can follow and talk with us. Sometimes, he surprises you and comes up with some really intelligent conversations! He used to be a very precise chemical engineer!!!
Now my mom is a different matter. She says that she did not have much brains to begin with, so she does not have much to loose! :> But, she did used to be a very nice, compassionate person. She still is to her few close friends. Just not her family!
Take care. And if you are like me, rest...
Tax time is fixing to start and I have to work with my dad on gathering their tax information. He still wants it to be perfect, and in just the right order for his tax man. But, he knows my ways by now... I just find it, or get it mailed and assembly and list and copy. With him helping along the way. Lets just say, his tax papers are no longer perfect! But, they do get done!!!!! :>
Love, Wannabe
That is something (or maybe more close to the norm), that they use the same phrase and the handwriting thing. My mom answers the phone 1st, if she can. Then she will let my dad talk to people like me, my sister, his friends and that is about it. If any Grandkids call, he talks to them too and his brother! When all this first started, many years ago, my dad would answer the phone and order things, or change things. Like he changed to AT&T, years ago, from SWBell Telephone. I hear that the companies have joined forces, now. But, it was hard using them in the beginning!
So, she tries to screen the sales calls!!! My dad does the best, when the person he is talking to is sitting right next to him or pretty close. And when there are only 2 or 3 people in a room. He just cannot keep track of more than one conversation - if that! My mother, my sister and I, among a few others, know how to talk to him. So, that he can follow and talk with us. Sometimes, he surprises you and comes up with some really intelligent conversations! He used to be a very precise chemical engineer!!!
Now my mom is a different matter. She says that she did not have much brains to begin with, so she does not have much to loose! :> But, she did used to be a very nice, compassionate person. She still is to her few close friends. Just not her family!
Take care. And if you are like me, rest...
Tax time is fixing to start and I have to work with my dad on gathering their tax information. He still wants it to be perfect, and in just the right order for his tax man. But, he knows my ways by now... I just find it, or get it mailed and assembly and list and copy. With him helping along the way. Lets just say, his tax papers are no longer perfect! But, they do get done!!!!! :>
Love, Wannabe
LuvMyLilDoggie
02-27-2006, 07:30 PM
About the handwriting....I NEVER put it together but when dad was here, he would sign his checks. The handwriting was a little shaky but it was ok. The thing I noticed though is his inability to keep his signature on or near the line. He used to always be meticulous with his handwriting. I can't believe I never thought about his AD affecting his handwriting. DAH!
I do see his inability to follow or even participate in coversations for long. When he gets confused, he stops talking. Wannabe and Begining, your posts sounded EXACTLY like my dad!
Gotta go. Pizza's here. Want some? I'll share...Mmmmm Mmmmm GOOD!!!! :)
Love, Barb
I do see his inability to follow or even participate in coversations for long. When he gets confused, he stops talking. Wannabe and Begining, your posts sounded EXACTLY like my dad!
Gotta go. Pizza's here. Want some? I'll share...Mmmmm Mmmmm GOOD!!!! :)
Love, Barb
Martha H
02-27-2006, 07:56 PM
Wow .. I always thought it was her eyesight going - for the last few years Mom's signature got worse and worse, and finally she wanted to sign the check up in the left hand corner on top of her printed name . I put her hand with the pen in it right on the line and said sign it right here .. and she sometimes wrote so big that her last name didn't fit on the line ... or so downhill that the last letters were off the bottom ...
Now I wonder - was it her vision, or was it her AD, or both?
I never knew other AD victims had the same problem in spite of good eyesight.
You learn something new every day.
Love,
Martha
Now I wonder - was it her vision, or was it her AD, or both?
I never knew other AD victims had the same problem in spite of good eyesight.
You learn something new every day.
Love,
Martha
Beginning
02-27-2006, 08:04 PM
Even after reading this Board for 3-years, I'm still amazed to see how many similarities there can be between people with this illness! The books emphasize that the illness is different for everyone, but the same patterns keep showing up. Sometimes I learn what's coming, and sometimes I hear about something and then realize my husband does the same thing!
I've got a dumb little problem (no, I'm not referring to one of my teenagers... :D ). My husband wants to go to a high school sports banquet next month. I dread it, since I know the noise, crowd, buffet, speakers etc. will be more than he can handle. I hope one of the few people who know about his illness will sit with us :( . I don't want my husband to be hurt by being left out if I hide events from him and I don't want my kid to feel "different," but I'm afraid that all the noise and attention will cause hubby to have one of those big drop-offs that happen whenever he gets overwhelmed. I'll get two tickets to the banquet and hope for the best. And in the meantime, our kid is on a team that might be going for a state championship!! Slim to no chance of winning, but you never know.
I've got a dumb little problem (no, I'm not referring to one of my teenagers... :D ). My husband wants to go to a high school sports banquet next month. I dread it, since I know the noise, crowd, buffet, speakers etc. will be more than he can handle. I hope one of the few people who know about his illness will sit with us :( . I don't want my husband to be hurt by being left out if I hide events from him and I don't want my kid to feel "different," but I'm afraid that all the noise and attention will cause hubby to have one of those big drop-offs that happen whenever he gets overwhelmed. I'll get two tickets to the banquet and hope for the best. And in the meantime, our kid is on a team that might be going for a state championship!! Slim to no chance of winning, but you never know.
LuvMyLilDoggie
02-28-2006, 02:16 PM
Good luck to your kid!
I was thinking about your little problem. Would it help if you shortened the time you were there? Maybe arrive late or leave early? I'll keep thinking and I'm sure others will have some more options for you.
Love, Barb
I was thinking about your little problem. Would it help if you shortened the time you were there? Maybe arrive late or leave early? I'll keep thinking and I'm sure others will have some more options for you.
Love, Barb
ToBeFreeToRoam
03-01-2006, 01:40 AM
Hi Beginning,
Does your husband really have a big drop off after being around a whole lot of people? Is it just people that he does not know, or people in general? My sister had a big 4th of July picnic last year and I brought my mom and dad. He seemed ok. Just mostly sat there and talked to people who came up to him to talk. But, he knew most of these people! He did not seem to get worse afterwards. But, I guess it depends on the person and the stage?!
Is your son going to get an award? If, so, you would want to be there at the end. So, maybe you could just come, right before they are fixing to eat? Still thinking here. My dad, just does not go (or want to go), or goes and does not talk much.
I do think you should buy the 2 tickets and just wait til close to time.
Take care.
Love, Wannabe
Does your husband really have a big drop off after being around a whole lot of people? Is it just people that he does not know, or people in general? My sister had a big 4th of July picnic last year and I brought my mom and dad. He seemed ok. Just mostly sat there and talked to people who came up to him to talk. But, he knew most of these people! He did not seem to get worse afterwards. But, I guess it depends on the person and the stage?!
Is your son going to get an award? If, so, you would want to be there at the end. So, maybe you could just come, right before they are fixing to eat? Still thinking here. My dad, just does not go (or want to go), or goes and does not talk much.
I do think you should buy the 2 tickets and just wait til close to time.
Take care.
Love, Wannabe
Beginning
03-01-2006, 07:24 AM
Thanks for the suggestions. They do the buffet first, then the awards, films, and then announce the individual players during coffee. We're going to have to go at the beginning to get seats. I'll get tickets, and hope for the best. We won again last night, so we're definitely in our State playoffs. And hubby only hooted & hollered for the wrong team twice!
He does get worse when there's a lot of confusion, people trying to talk to him, changes of any kind, etc. Even a trip to the mall can cause a set-back if there are a lot of people, although those are usually small drops. Any disruption to his usual patterns can cause a change. I went to a meeting of caregivers last year, and the expert who led the group described this process as having memories and functions held together with strings. If a string frays or vibrates too hard (tension, noise, etc.) and breaks, the other strings hold the memory or functioning still in place. Eventually the remaining strings break and that memory or function is lost. And since the AD patient has difficulty forming new strings or bridges, that loss is likely to be a permanent drop. I've observed definite drop-offs from stress, breaks or changes in daily patterns (vacations), and when he's in very noisy or crowded situations. He gets bewildered and frustrated, and it takes awhile to settle down again...usually at a lower level. We're lucky that he worked at home for nearly 20 years, so that being in the house is absolutely the most familiar place in the world for him.
He does get worse when there's a lot of confusion, people trying to talk to him, changes of any kind, etc. Even a trip to the mall can cause a set-back if there are a lot of people, although those are usually small drops. Any disruption to his usual patterns can cause a change. I went to a meeting of caregivers last year, and the expert who led the group described this process as having memories and functions held together with strings. If a string frays or vibrates too hard (tension, noise, etc.) and breaks, the other strings hold the memory or functioning still in place. Eventually the remaining strings break and that memory or function is lost. And since the AD patient has difficulty forming new strings or bridges, that loss is likely to be a permanent drop. I've observed definite drop-offs from stress, breaks or changes in daily patterns (vacations), and when he's in very noisy or crowded situations. He gets bewildered and frustrated, and it takes awhile to settle down again...usually at a lower level. We're lucky that he worked at home for nearly 20 years, so that being in the house is absolutely the most familiar place in the world for him.
Sandyspen
03-01-2006, 08:52 AM
Beginning,
That description makes so much sense to me.
My mom is the same about socializing. She lived in an adult community with many activities. Morning coffees, potluck dinners, trips to local events. Before we had a diagnosis, she had begun to stay home and avoid these things. The lady who was in charge of their recreation called me because she was concerned. They had to coax and beg to keep mom active and at the larger events with many people there (people she'd known for years)she said that mom would just stand around and look confused. She wears a hearing aid so we thought it was her hearing, jumbled conversations, etc.
I'm not sure if I've told this before but my dh and mom and I were sitting in the living room watching Judge Alex. DH and I were talking in the background about new furniture we were about to purchase. Judge Alex was about ownership of a dog.
Mom turns to me and says, "I don't understand this show. What does the dog have to do with anything?"
I say, "Well Mom, that's the reason they're there. They think the dog is not pure bred and they are suing."
Mom says, "But when the case started, it was about furniture. What does the dog have to do with furniture?"
I was so surprised. She had incorporated our conversation in the background into what she was watching on TV, as though it was all one in the same. I can't even imagine how confusing that must be. It's almost like she isn't able to separate conversations or background noise. It all arrives in her mind jumbled together. Very disturbing.
Then, I could understand why she no longer liked the larger events.
That description makes so much sense to me.
My mom is the same about socializing. She lived in an adult community with many activities. Morning coffees, potluck dinners, trips to local events. Before we had a diagnosis, she had begun to stay home and avoid these things. The lady who was in charge of their recreation called me because she was concerned. They had to coax and beg to keep mom active and at the larger events with many people there (people she'd known for years)she said that mom would just stand around and look confused. She wears a hearing aid so we thought it was her hearing, jumbled conversations, etc.
I'm not sure if I've told this before but my dh and mom and I were sitting in the living room watching Judge Alex. DH and I were talking in the background about new furniture we were about to purchase. Judge Alex was about ownership of a dog.
Mom turns to me and says, "I don't understand this show. What does the dog have to do with anything?"
I say, "Well Mom, that's the reason they're there. They think the dog is not pure bred and they are suing."
Mom says, "But when the case started, it was about furniture. What does the dog have to do with furniture?"
I was so surprised. She had incorporated our conversation in the background into what she was watching on TV, as though it was all one in the same. I can't even imagine how confusing that must be. It's almost like she isn't able to separate conversations or background noise. It all arrives in her mind jumbled together. Very disturbing.
Then, I could understand why she no longer liked the larger events.
Glenna
03-06-2006, 11:05 AM
Have been without pc access for months as I've been living on mom's love seat 24/7 at the senior complex due to her rapid deterioration, but finally have this old laptop and can't resist jumping in on the faking it discussion.
Mom has gotten so bad she doesn't recognize anyone, including herself or me. Doesn't know where she is, who she is. Keeps asking if it's day or night and what's happening to her. Thinks the people on tv are real and asks if the government is here; can't tell the difference between animated characters and real. The scariest thing so far is the language loss. She's done screwy things with words ever since the Oct.2000 heart surgery, but we were always able to understand each other, with and without words. That's gone. So scared we'll soon not be able to understand each other at all.
Now to the faking it. Recently took mom to the cardio, hospital, neuro, and for a heart scan. All four places I was told "she's so cute." She turns into Mary Sunshine, smiling, CALMLY sits READING (can't sit still for a second at home) in the waiting room and looks perfectly normal and happy. She sounds normal and answers questions in an adult voice. At home she usually uses a whimpering 3-yo voice and there's no Mary Sunshine, but a terrified victim of dementia who has no idea of who, what, where, when or why that cries because God won't let her die.
There's no reading magazines at home because although she can still sound out most of the words, she has no idea what they're writing about and will throw it and start crying. She no longer can watch nature videos or the beautiful photos in photography magazines. I finally realized she doesn't remember what those things are. Every animal is a cat. Mom has as a great view from the 9th floor but never looks out the window to enjoy it as she once did. Just runs about in an agitated fashion saying "what should I do now what should I do now what should I do now..." What she's doing to the dishes right now is an absolute sin (lol, gotta try to laugh when not crying.)
At the neuro she knew a pen was something to write with and immediately was able to tell him my name and that I was her daughter with an enormous happy grin. Huh? There must be some chemical that kick's into the brain when she's excited and wants away from any doctor or hospital and gives her these temporary abilities. I do not for a moment believe she's faking the dementia because you all know the reality of that hell...
At home she'll be shaking and crying and staring at me. When I ask what's wrong it's because she doesn't know who she is, who I am, why or where she is, and there's no explaining it to her because she doesn't seem to be able to understand. Trying to soothe her and promise she's safe and not to worry doesn't work. She has no attention span or interest in anything so it's very hard to distract her with an activity.
The hospital only kept her for 3 hours because she was such a bundle of joy and wanted to be released after a TIA. Strangers came up and talked to her and told me how cute she was and one sang to her in Polish. Good grief, this is the same person that hides from everyone because she's scared and ashamed as if what's happening in her brain is her fault, doesn't recognize anyone and can't communicate.
When I took her for her heart scan I warned them of her dementia and that she would be terrified if I was not with her. She clings to me for dear life and shakes like a leaf and cries if I try to leave her for a moment at home. Yet there, the techs tell me to keep checking her to make sure she's all right while on the table. What happens though is that she responds to all their questions and instructions with a smile and appears perfectly normal. When I talk to her as they had asked she does not respond at all and I feel like an idiot. She does not seem to have dementia at all, just a dear old lady with a moron daughter she's trying to ignore.
As soon as we leave she has no idea who those people were or where she's been or why, and the crying three-year-old voice returns. Where are we going? What's happening? Well, you know the drill...try to explain, rinse and repeat a few million times.
So all the medical people think I'm the one who's batty and imagining things, and my mom's cute as a button and seems perfectly fine for her age. If only they could see her now, crying and shaking and looking at me for help with her pleading, lost, dementia eyes. Gotta run, and hugs and prayers for my dear fellow caregivers and our loved ones.
Mom has gotten so bad she doesn't recognize anyone, including herself or me. Doesn't know where she is, who she is. Keeps asking if it's day or night and what's happening to her. Thinks the people on tv are real and asks if the government is here; can't tell the difference between animated characters and real. The scariest thing so far is the language loss. She's done screwy things with words ever since the Oct.2000 heart surgery, but we were always able to understand each other, with and without words. That's gone. So scared we'll soon not be able to understand each other at all.
Now to the faking it. Recently took mom to the cardio, hospital, neuro, and for a heart scan. All four places I was told "she's so cute." She turns into Mary Sunshine, smiling, CALMLY sits READING (can't sit still for a second at home) in the waiting room and looks perfectly normal and happy. She sounds normal and answers questions in an adult voice. At home she usually uses a whimpering 3-yo voice and there's no Mary Sunshine, but a terrified victim of dementia who has no idea of who, what, where, when or why that cries because God won't let her die.
There's no reading magazines at home because although she can still sound out most of the words, she has no idea what they're writing about and will throw it and start crying. She no longer can watch nature videos or the beautiful photos in photography magazines. I finally realized she doesn't remember what those things are. Every animal is a cat. Mom has as a great view from the 9th floor but never looks out the window to enjoy it as she once did. Just runs about in an agitated fashion saying "what should I do now what should I do now what should I do now..." What she's doing to the dishes right now is an absolute sin (lol, gotta try to laugh when not crying.)
At the neuro she knew a pen was something to write with and immediately was able to tell him my name and that I was her daughter with an enormous happy grin. Huh? There must be some chemical that kick's into the brain when she's excited and wants away from any doctor or hospital and gives her these temporary abilities. I do not for a moment believe she's faking the dementia because you all know the reality of that hell...
At home she'll be shaking and crying and staring at me. When I ask what's wrong it's because she doesn't know who she is, who I am, why or where she is, and there's no explaining it to her because she doesn't seem to be able to understand. Trying to soothe her and promise she's safe and not to worry doesn't work. She has no attention span or interest in anything so it's very hard to distract her with an activity.
The hospital only kept her for 3 hours because she was such a bundle of joy and wanted to be released after a TIA. Strangers came up and talked to her and told me how cute she was and one sang to her in Polish. Good grief, this is the same person that hides from everyone because she's scared and ashamed as if what's happening in her brain is her fault, doesn't recognize anyone and can't communicate.
When I took her for her heart scan I warned them of her dementia and that she would be terrified if I was not with her. She clings to me for dear life and shakes like a leaf and cries if I try to leave her for a moment at home. Yet there, the techs tell me to keep checking her to make sure she's all right while on the table. What happens though is that she responds to all their questions and instructions with a smile and appears perfectly normal. When I talk to her as they had asked she does not respond at all and I feel like an idiot. She does not seem to have dementia at all, just a dear old lady with a moron daughter she's trying to ignore.
As soon as we leave she has no idea who those people were or where she's been or why, and the crying three-year-old voice returns. Where are we going? What's happening? Well, you know the drill...try to explain, rinse and repeat a few million times.
So all the medical people think I'm the one who's batty and imagining things, and my mom's cute as a button and seems perfectly fine for her age. If only they could see her now, crying and shaking and looking at me for help with her pleading, lost, dementia eyes. Gotta run, and hugs and prayers for my dear fellow caregivers and our loved ones.
Sandyspen
03-06-2006, 12:05 PM
Glenna,
You Told my story to the word!
The only difference being I don't get the 3 year old voice but a raging, screaming 5 year old, who will kick and hit if she doesn't get her way.
You put it succinctly though, and I'm printing this post to show my brothers. I'm not the only ogre, imagining that their parent has dementia.
You Told my story to the word!
The only difference being I don't get the 3 year old voice but a raging, screaming 5 year old, who will kick and hit if she doesn't get her way.
You put it succinctly though, and I'm printing this post to show my brothers. I'm not the only ogre, imagining that their parent has dementia.
Martha H
03-06-2006, 12:42 PM
I'm so sorry you are in this predicament, Glenna.
Everything you wrote applied to Mom also, not all that long ago. At the doctor's office the doctor dropped his pen and she jumped up and retrieved it for him. He was so impressed that a 90something old lady was so agile and quick.
The fact that she wasn't quite sure what day or month it was didn't bother him one bit. She is old and forgetful, but such a joy and delight to be with. What a lady! Cute, darling, sweet.
At home we had arguments about who left the $h-- on the floor - not her!
And at night she shone a flashlight in my face trying to figure out who this stranger was in her house.
Once the hip fracture took place, she was in a hospital and then a NH and everybody immediately recognized dementia. They can't keep it up for days and days on end ...
Love,
Martha
Everything you wrote applied to Mom also, not all that long ago. At the doctor's office the doctor dropped his pen and she jumped up and retrieved it for him. He was so impressed that a 90something old lady was so agile and quick.
The fact that she wasn't quite sure what day or month it was didn't bother him one bit. She is old and forgetful, but such a joy and delight to be with. What a lady! Cute, darling, sweet.
At home we had arguments about who left the $h-- on the floor - not her!
And at night she shone a flashlight in my face trying to figure out who this stranger was in her house.
Once the hip fracture took place, she was in a hospital and then a NH and everybody immediately recognized dementia. They can't keep it up for days and days on end ...
Love,
Martha
BarbaraH
03-06-2006, 02:19 PM
Hi Glenna,
If at all possible, move your mother to an Alzheimer's unit so the staff can care for her instead of you spending your time with her and your nights on the couch. Your mother is past the stage where senior housing can work. At the assisted living facility where my mother was first, there was one little lady who sat on a couch in the lobby day after day, cried endlessly, and repeated "What am I supposed to do?" or "What shall I do?" That was so sad.
My mother, Sally's MIL, and Martha's mother were/are more serene and content in an AD facility. We've wondered whether it's the relief of no decisions to be made, of not having to struggle to fit into a world gone upside down, of having pleasant activities geared for them to enjoy, or what could be why they each quickly settled down. I hope Sandy's mother will be happier in her pretty new setting when she's had time to adjust and her medicines are regulated. I wonder if it wouldn't be the same for your mother?
If there is someone you must convince about your mother's confusion and agitation, get a camcorder or a tape recorder and make a record of her words and actions. If there are staff members at the senior housing, get their accounts of her behavior. The people who staff the AD units will believe you!
One thing is for sure and that is your mother wouldn't want you sacrificing yourself for her. Another thing that is for sure is that your mother will slip further away no matter what you do or give up to help her. A last certainty is that AD care always becomes too much, too exhausting, too heartbreaking, or too impossible for the caregiver to continue. It's okay to give your mother to other caregivers. Really.
Hope you already have your mother's Durable Power of Attorney as that will make everything easier.
Wishing you well - Barbara :)
If at all possible, move your mother to an Alzheimer's unit so the staff can care for her instead of you spending your time with her and your nights on the couch. Your mother is past the stage where senior housing can work. At the assisted living facility where my mother was first, there was one little lady who sat on a couch in the lobby day after day, cried endlessly, and repeated "What am I supposed to do?" or "What shall I do?" That was so sad.
My mother, Sally's MIL, and Martha's mother were/are more serene and content in an AD facility. We've wondered whether it's the relief of no decisions to be made, of not having to struggle to fit into a world gone upside down, of having pleasant activities geared for them to enjoy, or what could be why they each quickly settled down. I hope Sandy's mother will be happier in her pretty new setting when she's had time to adjust and her medicines are regulated. I wonder if it wouldn't be the same for your mother?
If there is someone you must convince about your mother's confusion and agitation, get a camcorder or a tape recorder and make a record of her words and actions. If there are staff members at the senior housing, get their accounts of her behavior. The people who staff the AD units will believe you!
One thing is for sure and that is your mother wouldn't want you sacrificing yourself for her. Another thing that is for sure is that your mother will slip further away no matter what you do or give up to help her. A last certainty is that AD care always becomes too much, too exhausting, too heartbreaking, or too impossible for the caregiver to continue. It's okay to give your mother to other caregivers. Really.
Hope you already have your mother's Durable Power of Attorney as that will make everything easier.
Wishing you well - Barbara :)
angel_bear
03-07-2006, 02:30 AM
My ex-charge, because she didn't have any words would say "blather blather bling" and you would say "Oh, you want a sausage for dinner?" and she would say "yes". When you gave her the sausage, she would say "blather blather bling" and throw it back at you, not wanting the sausage at all!
That bluffing was confusing!!
when I took her to the Police Station to get her to hand in her drivers licence, she had a few words .. the Policeman said "Your licence has been suspended and your not allowed to drive" and she said "SIGH" -- "Well, you see ... blather blather bling, blather blather and so and so and so, see?"
He looked at her.
He looked at me.
He looked at her and said "your definately not allowed to drive anymore"
Then she promptly went into a full tirade, with enough words to say "I never never once, never never and you and that and that and so and two and two and two, and never never never, so there"
Which was translated as "I've never had an accident, I've had my licence for over 22 years and I've never been treated like this in my life"
The fact she had ripped the door off a parked car whilst driving her own car, and had driven THROUGH somebody's front fence in a matter of months was irrelevant. Good thing I had gotten to the Police first, because if she HAD the words, she COULD have convinced them.
Of course, trying to get the rest of the family to stop INTERPRETING her few words into believable sentences was the hardest.
I know now, with the residents I work with, I WANT to believe them, and that's the hardest thing I'm finding -- to take what they say with a grain of salt and find out facts. Sometimes I think the other staff are being harsh, but they're not really, they're being realistic, and have worked with the people for a lot longer than me.
Oh it's a confusing disease !! For everybody!
cheers
Sally
That bluffing was confusing!!
when I took her to the Police Station to get her to hand in her drivers licence, she had a few words .. the Policeman said "Your licence has been suspended and your not allowed to drive" and she said "SIGH" -- "Well, you see ... blather blather bling, blather blather and so and so and so, see?"
He looked at her.
He looked at me.
He looked at her and said "your definately not allowed to drive anymore"
Then she promptly went into a full tirade, with enough words to say "I never never once, never never and you and that and that and so and two and two and two, and never never never, so there"
Which was translated as "I've never had an accident, I've had my licence for over 22 years and I've never been treated like this in my life"
The fact she had ripped the door off a parked car whilst driving her own car, and had driven THROUGH somebody's front fence in a matter of months was irrelevant. Good thing I had gotten to the Police first, because if she HAD the words, she COULD have convinced them.
Of course, trying to get the rest of the family to stop INTERPRETING her few words into believable sentences was the hardest.
I know now, with the residents I work with, I WANT to believe them, and that's the hardest thing I'm finding -- to take what they say with a grain of salt and find out facts. Sometimes I think the other staff are being harsh, but they're not really, they're being realistic, and have worked with the people for a lot longer than me.
Oh it's a confusing disease !! For everybody!
cheers
Sally
Glenna
03-09-2006, 12:10 AM
Hi friends...am back from the hospital and the same thing happened. Excellent fake-out, at least for as long as she could.
But first, am so grateful reading others’ experiences because it somehow makes this whole thing bearable knowing others understand. I know I’m going to forget something struggling on this laptop dialup with no printer, but will give it a go.
Sandy, you make me appreciate the 3-yo voice, because screaming…can not begin to imagine dealing with that.
Martha, I missed reading about your mom! She always amazed me with her determination and spunk. If things ever start to calm down nights, I’ll have to go back and catch up on everyone. I always thought too that my mom’s dementia had some similarities in the root cause being vascular disease and a frontal lobe stroke, even though they say it’s Alzheimer’s and by now that may be.
Barbara, everything you say makes total sense, but I just can’t do it. Today in the hospital my mom was hysterically shaking and crying that they would “take her”. I don’t think a day goes by when I don’t have to promise her over and over that I’ll not leave her. Then there’s an experience I witnessed with my father at a nursing home (it was a bad place and I know it can’t be the norm), but it scarred me forever and I can’t trust anyone or place now. I keep thinking if someone hurt her she’d never be able to tell. Luckily I don’t have family and so far am hanging on, and amazingly find this loveseat comfy to sleep on! (Besides, mom gets up at night right about when I fall asleep and starts banging cupboards and drawers and I have to sleep light to stop her from waking the whole building).
Took mom to emergency today on doctor’s advice after some bad head sensations she was having and the big drop in understanding speech, thinking it might be another stroke. We’re practically out the door and she has a feed-me-now fit even though she had recently eaten. Always ravenous. Eats again and we’re off. Mary Sunshine she becomes at the hospital and the doctor and nurse see no dementia. Excellent fake-out which she manages for about an hour. By then she’s shaking and crying that she’s starving. Later they’re taking her for a CT scan and the dementia is obvious, but those seeing it aren’t the doctor or nurse We’re waiting in the hall and by then she’s shaking and crying and begging to go home, acting as though she’s been lying on broken glass for all eternity with her panties on fire even though the gurney is comfortably padded and she has a nice fluffy pillow. They release her after 3 hours—no stroke on the CT. Suggests possible micro-strokes that don’t show up on CT could be causing the head sensations.
She’s shaking, making a huge commotion and grabs and kisses the doctor’s hands for letting her go home. He seems to not find this so “cute” any more. Ha.
Back to the car and mom is asking about the gauze and tape on her hands and arms. Has absolutely no memory that she was just in the hospital and jumps back to feed-me-now mode. Eats ravenously, forgets in 2 minutes and demands to be fed again. And so it goes.
Hugs and prayers.
But first, am so grateful reading others’ experiences because it somehow makes this whole thing bearable knowing others understand. I know I’m going to forget something struggling on this laptop dialup with no printer, but will give it a go.
Sandy, you make me appreciate the 3-yo voice, because screaming…can not begin to imagine dealing with that.
Martha, I missed reading about your mom! She always amazed me with her determination and spunk. If things ever start to calm down nights, I’ll have to go back and catch up on everyone. I always thought too that my mom’s dementia had some similarities in the root cause being vascular disease and a frontal lobe stroke, even though they say it’s Alzheimer’s and by now that may be.
Barbara, everything you say makes total sense, but I just can’t do it. Today in the hospital my mom was hysterically shaking and crying that they would “take her”. I don’t think a day goes by when I don’t have to promise her over and over that I’ll not leave her. Then there’s an experience I witnessed with my father at a nursing home (it was a bad place and I know it can’t be the norm), but it scarred me forever and I can’t trust anyone or place now. I keep thinking if someone hurt her she’d never be able to tell. Luckily I don’t have family and so far am hanging on, and amazingly find this loveseat comfy to sleep on! (Besides, mom gets up at night right about when I fall asleep and starts banging cupboards and drawers and I have to sleep light to stop her from waking the whole building).
Took mom to emergency today on doctor’s advice after some bad head sensations she was having and the big drop in understanding speech, thinking it might be another stroke. We’re practically out the door and she has a feed-me-now fit even though she had recently eaten. Always ravenous. Eats again and we’re off. Mary Sunshine she becomes at the hospital and the doctor and nurse see no dementia. Excellent fake-out which she manages for about an hour. By then she’s shaking and crying that she’s starving. Later they’re taking her for a CT scan and the dementia is obvious, but those seeing it aren’t the doctor or nurse We’re waiting in the hall and by then she’s shaking and crying and begging to go home, acting as though she’s been lying on broken glass for all eternity with her panties on fire even though the gurney is comfortably padded and she has a nice fluffy pillow. They release her after 3 hours—no stroke on the CT. Suggests possible micro-strokes that don’t show up on CT could be causing the head sensations.
She’s shaking, making a huge commotion and grabs and kisses the doctor’s hands for letting her go home. He seems to not find this so “cute” any more. Ha.
Back to the car and mom is asking about the gauze and tape on her hands and arms. Has absolutely no memory that she was just in the hospital and jumps back to feed-me-now mode. Eats ravenously, forgets in 2 minutes and demands to be fed again. And so it goes.
Hugs and prayers.
Martha H
03-09-2006, 08:26 AM
What a burden for you to carry all on your own. I don't know how you do it.
I still think a good NH will eventually be the answer. You promised to always take care of her - and having her in a home with 24/7 care IS taking care of her. Think of it that way. Mom is now being cared for way better than I could do alone, or than my brother could do together with his wife.
She has the best possible care now, and is happy.
God bless you,
Love,
Martha
I still think a good NH will eventually be the answer. You promised to always take care of her - and having her in a home with 24/7 care IS taking care of her. Think of it that way. Mom is now being cared for way better than I could do alone, or than my brother could do together with his wife.
She has the best possible care now, and is happy.
God bless you,
Love,
Martha
Sandyspen
03-09-2006, 09:46 AM
Glenna,
I agree with Martha. You are doing a great job taking care of your mom. You will know when you can no longer do it. I swore that I would never put my mom in a nh until she no longer knew who I was. Sadly, I wasn't able to wait that long. You just never know ahead of time what this dreaded disease will bring your way and sometimes we do have to break those promises that we make to ourselves.
Glenna, I was so glad you mentioned about your mom not understanding speech anymore. Or, at least, having difficulties.
I've thrown away 2-3 packages of perfectly good hearing-aid batteries because Mom says she needs a new battery. I couldn't figure out what the heck was going on. Normally, when the battery is low it will beep for a day or so, much like a cell phone. Mom doesn't remember that, but she will say; "My hearing aid is making a funny noise. It's just beeping." Then I know, it's time for a new battery.
But lately, you'll be speaking.....she'll look at you with a puzzled expression, then say, "I think I need a new battery." I swapped batteries in a couple packages, assuming the packages were old. Same thing again. Finally, on her next demand for a new battery, I went around behind her. (She can't hear a thing when the battery is really dead,) and said, "Mom can you hear me?"
She turned around promptly, "Yes, I can hear you." Voila! No dead battery. Then, I knew something else was happening. She can hear me, but doesn't understand what I'm saying.
She has a little box that holds her hearing aid and batteries. Now, I change batteries 3-4 times per visit. Drop the old batteries into the box and use them all over and over until they start beeping and I know they are really dead.
She hears......but doesn't understand, and thinks a new battery will fix the problem. Wheh! Took me awhile but I figured it out.
Of course, my brother called on Monday and wanted to know where to buy batteries for mom's hearing aid. All of her batteries are dead. Oh lordy, I explain the situation. He says, "Yeah, well, I'll go to walgreens and buy some new batteries."
Be glad you don't have others involved to fight you at every hard-gained piece of knowledge.
Remember to do things for Glenna! You deserve it!
I agree with Martha. You are doing a great job taking care of your mom. You will know when you can no longer do it. I swore that I would never put my mom in a nh until she no longer knew who I was. Sadly, I wasn't able to wait that long. You just never know ahead of time what this dreaded disease will bring your way and sometimes we do have to break those promises that we make to ourselves.
Glenna, I was so glad you mentioned about your mom not understanding speech anymore. Or, at least, having difficulties.
I've thrown away 2-3 packages of perfectly good hearing-aid batteries because Mom says she needs a new battery. I couldn't figure out what the heck was going on. Normally, when the battery is low it will beep for a day or so, much like a cell phone. Mom doesn't remember that, but she will say; "My hearing aid is making a funny noise. It's just beeping." Then I know, it's time for a new battery.
But lately, you'll be speaking.....she'll look at you with a puzzled expression, then say, "I think I need a new battery." I swapped batteries in a couple packages, assuming the packages were old. Same thing again. Finally, on her next demand for a new battery, I went around behind her. (She can't hear a thing when the battery is really dead,) and said, "Mom can you hear me?"
She turned around promptly, "Yes, I can hear you." Voila! No dead battery. Then, I knew something else was happening. She can hear me, but doesn't understand what I'm saying.
She has a little box that holds her hearing aid and batteries. Now, I change batteries 3-4 times per visit. Drop the old batteries into the box and use them all over and over until they start beeping and I know they are really dead.
She hears......but doesn't understand, and thinks a new battery will fix the problem. Wheh! Took me awhile but I figured it out.
Of course, my brother called on Monday and wanted to know where to buy batteries for mom's hearing aid. All of her batteries are dead. Oh lordy, I explain the situation. He says, "Yeah, well, I'll go to walgreens and buy some new batteries."
Be glad you don't have others involved to fight you at every hard-gained piece of knowledge.
Remember to do things for Glenna! You deserve it!