The 17th of November I communicated with Tom's Doctors that Tom wanted and NEEDED something but he did not want to take anything he has taken before.
He had become someone I did not want to care for any more... someone I didn't know... mean and belligerent.
After going over what meds Tom had been on an the result of each and what he was like now.... We all came to an agreement to try "celexa"
After a month Tom has transformed back into someone I knew once..... He is once again engaging in life and his disposition is what it once was so long ago.
He still has the deficits that dementia has taken but just to have my "sunshine
" back is the Greatest Christmas present the girls and I could ever hope for.
We call it Our Christmas Miracle.....
Friday, December 16, 2011
Tuesday, October 11, 2011
He Is Cured......
Tom's stress test came out fine... no sign of every having a heart attack, blood flow was normal .... no blockage or anything......
We cancelled the sleep apnea test as Tom has been loosing weight and so he has been breathing better at night.
Tom went on a diet after his hospital stay... He said he had to take off all the weight he gained that the pills put on him.... So he quit eating a bag of chips a day, bread with a pound of butter per slice, helpings of food that would feed two people well, candy bars and chocolate assortments of all kinds,...........
In one month he has lost 15 lbs (he says 30 -50... depends on who he told)..... now exercise is NOT required for this diet. Tom calls it a starvation diet....... NO BODY else could ever do what he is doing... it is brutal!!!!!!
Tom seems so happy inside that he radiates happiness as he has declared himself fit as a fiddle and cured of his dementia.....
He speaks of all the energy he has now... as he sits on the phone or staring out the window talking about all he is going to do that day or already did from his chair at the kitchen table.......?
The weather has been more than great this past month... 70's - 80........ ONE out of four days he might leave the house to go bird hunting on his 4 wheeler....... as he tells every one he goes every day all day long...... AND oh my goodness the birds he has gotten.....
BUT he is happy inside and that's all that counts... he knows his stories are stories but it makes him and convinces himself... he IS OK....
Unfortunately he didn't get back what the disease already claimed and one of them being his filter for inappropriate language..... He over reacts to what he perceives was said and reacts with the foulest mouth I have ever heard in my entire 57 years on this earth....... with pure HATE in his voice... (if the devil had a voice... ummmm ☞ "TOM" )
AND he shares his miss - guided opinions with all who will listen and attack anyone he believes has wronged him in any way......
BUT he is happy and is cured so it's OK... he has always been like that?????
We cancelled the sleep apnea test as Tom has been loosing weight and so he has been breathing better at night.
Tom went on a diet after his hospital stay... He said he had to take off all the weight he gained that the pills put on him.... So he quit eating a bag of chips a day, bread with a pound of butter per slice, helpings of food that would feed two people well, candy bars and chocolate assortments of all kinds,...........
In one month he has lost 15 lbs (he says 30 -50... depends on who he told)..... now exercise is NOT required for this diet. Tom calls it a starvation diet....... NO BODY else could ever do what he is doing... it is brutal!!!!!!
Tom seems so happy inside that he radiates happiness as he has declared himself fit as a fiddle and cured of his dementia.....
He speaks of all the energy he has now... as he sits on the phone or staring out the window talking about all he is going to do that day or already did from his chair at the kitchen table.......?
The weather has been more than great this past month... 70's - 80........ ONE out of four days he might leave the house to go bird hunting on his 4 wheeler....... as he tells every one he goes every day all day long...... AND oh my goodness the birds he has gotten.....
BUT he is happy inside and that's all that counts... he knows his stories are stories but it makes him and convinces himself... he IS OK....
Unfortunately he didn't get back what the disease already claimed and one of them being his filter for inappropriate language..... He over reacts to what he perceives was said and reacts with the foulest mouth I have ever heard in my entire 57 years on this earth....... with pure HATE in his voice... (if the devil had a voice... ummmm ☞ "TOM" )
AND he shares his miss - guided opinions with all who will listen and attack anyone he believes has wronged him in any way......
BUT he is happy and is cured so it's OK... he has always been like that?????
Sunday, September 18, 2011
Follow Up Dr. Visit
Tom had a follow up visit with his own Dr. from his Hospital visit...... I had the hospital fax the records from that stay to Tom's Dr..... and because I have to watch what I say I sent a report to his Dr. ahead of his visit......
It really helps to do this as the Dr. can cut through the bull and I don't get my head bit off..... OKAY... I DID! ....... get my head bit off.
I SAID..." Tom struggles for air when he sleeps at night and has periods of not breathing." hence a sleep study test. It went down hill from there..... starting with a nice word " LIAR! "
Tom IS doing fine.... all his physical/health problems stem from his inability to get off his butt........ smoking, lack of fluids, exercise and sodium intake......
Tom IS doing his best to help himself BUT the disease limits his ability to follow through.
Tom has a stress test coming up to see the heart is fine.... the Dr. doesn't think we will find anything there but we must make sure........
ANONYMOUS
It really helps to do this as the Dr. can cut through the bull and I don't get my head bit off..... OKAY... I DID! ....... get my head bit off.
I SAID..." Tom struggles for air when he sleeps at night and has periods of not breathing." hence a sleep study test. It went down hill from there..... starting with a nice word " LIAR! "
Tom IS doing fine.... all his physical/health problems stem from his inability to get off his butt........ smoking, lack of fluids, exercise and sodium intake......
Tom IS doing his best to help himself BUT the disease limits his ability to follow through.
Tom has a stress test coming up to see the heart is fine.... the Dr. doesn't think we will find anything there but we must make sure........
|
There are times in
life when everything you attempt will seem to go wrong. Your faith may
be strong and your commitment deep, yet adversity will come knocking on
your door. The power of prayer will strengthen and stabilize you. But
you can't pray away life's seasons. God has a purpose for not allowing
you to be fruitful all the time. Real growth requires seasons of
struggle as well as seasons of success
|
Monday, September 5, 2011
Field Trip
Unfortunately Tom's symptoms are a result of the damage the disease is doing to his brain.... I understand the confusion some people have over the fact Tom is convincing in his stories and goes out of his way to prove there is nothing wrong with his memory as he and everyone else feel there can't be anything wrong because he "can remember"...............and his stories ARE convincing.
HELLO!!!!!!! To those who have NOT bothered to learn anything about Alzheimer or any related dementia live in the false belief we are discussing "MEMORY ISSUES ONLY"
With Alzheimer, memory is one of the first symptom that makes you realize what the issue might be..... That's usually after living with and dealing with or not , with the behavior changes that creep in ........
What else you might not know IS that the first symptoms of dementia start out looking like Alzheimer and as it progresses the symptoms than appear or not that points to a variant of another dementia and or an entirely different one.....
Diagnosis is largely made by an experienced neurologist base on symptoms......and what skills and functions they are losing.... and in what order.
ALL dementias take you down the same basic road of loss of brain function to the point of death. Rate at which one travels this journey varies...... the path it takes through ones brain varies.....medication to help through the symptoms varies....... What is inevitable is DEATH.
So that is where we are..... The parts of Tom's brain that is damaged by what ever dementia Tom has, which now is appearing to be different than Alzheimer or a variant of another with it..... What ever the case is the result of the diseases is ....... apathy, sleep issues, anger issues, inability to reason, lack of judgment, he shadows....... the list goes on BUT for all that he has lost, his memory is better (BUT not good) than it should be if it was Alzheimer...... and his stories are SO BELIEVABLE!
So what is killing him? In the past year he quit doing what little he was that may have given him some exercise.... He now walks from his bed to the kitchen table and the bathroom. (We have a small home)..... out side he gets on his 4-wheeler that he parks by the door to go anywhere in the yard......
He has a cigarette in his mouth day and night except for when food or drink is going in his mouth. When he can't breath he grabs a cigarette, same with chest pain or anything else......
The rest should be self explanatory.... No oxygen =- heart damage = heart failure.....
No exercise = XYZ
The results of the tests at the hospital showed he did NOT have a heart attack or congested heart failure.... his oxygen ran low.....his sodium and potassium were a bit low....... And he more than likely has emphysema as his lungs were diminished.
ON discharge he heard..... No heart attack.. no congested heart failure, the swelling was gone ...... he was in GREAT SHAPE and could go home and smoke all he wanted and drink all he wanted and his salt intake was no big deal.....because he was just fine! Here is where I bang my head against the wall.
Tom has a follow up with his own doctor, stress test was ordered and a sleep apnea study. All we can do is see where this takes us..... You can lead a horse to water but you can't make him drink........
Tom blames his weight gain on medications.....
He went on Aricept in 2007..... his weight gain started 5/26/10 he weighed 223 lb and by 9/17/10 he weighed 240 lb.......4/21/11 he weighed 261 lbs and now weighed out at 271 with water weight included........
His other meds that he claims put on ALL the weight was started in Jan. of 2011
HELLO!!!!!!! To those who have NOT bothered to learn anything about Alzheimer or any related dementia live in the false belief we are discussing "MEMORY ISSUES ONLY"
With Alzheimer, memory is one of the first symptom that makes you realize what the issue might be..... That's usually after living with and dealing with or not , with the behavior changes that creep in ........
What else you might not know IS that the first symptoms of dementia start out looking like Alzheimer and as it progresses the symptoms than appear or not that points to a variant of another dementia and or an entirely different one.....
Diagnosis is largely made by an experienced neurologist base on symptoms......and what skills and functions they are losing.... and in what order.
ALL dementias take you down the same basic road of loss of brain function to the point of death. Rate at which one travels this journey varies...... the path it takes through ones brain varies.....medication to help through the symptoms varies....... What is inevitable is DEATH.
So that is where we are..... The parts of Tom's brain that is damaged by what ever dementia Tom has, which now is appearing to be different than Alzheimer or a variant of another with it..... What ever the case is the result of the diseases is ....... apathy, sleep issues, anger issues, inability to reason, lack of judgment, he shadows....... the list goes on BUT for all that he has lost, his memory is better (BUT not good) than it should be if it was Alzheimer...... and his stories are SO BELIEVABLE!
So what is killing him? In the past year he quit doing what little he was that may have given him some exercise.... He now walks from his bed to the kitchen table and the bathroom. (We have a small home)..... out side he gets on his 4-wheeler that he parks by the door to go anywhere in the yard......
He has a cigarette in his mouth day and night except for when food or drink is going in his mouth. When he can't breath he grabs a cigarette, same with chest pain or anything else......
The rest should be self explanatory.... No oxygen =- heart damage = heart failure.....
No exercise = XYZ
The results of the tests at the hospital showed he did NOT have a heart attack or congested heart failure.... his oxygen ran low.....his sodium and potassium were a bit low....... And he more than likely has emphysema as his lungs were diminished.
ON discharge he heard..... No heart attack.. no congested heart failure, the swelling was gone ...... he was in GREAT SHAPE and could go home and smoke all he wanted and drink all he wanted and his salt intake was no big deal.....because he was just fine! Here is where I bang my head against the wall.
Tom has a follow up with his own doctor, stress test was ordered and a sleep apnea study. All we can do is see where this takes us..... You can lead a horse to water but you can't make him drink........
Tom blames his weight gain on medications.....
He went on Aricept in 2007..... his weight gain started 5/26/10 he weighed 223 lb and by 9/17/10 he weighed 240 lb.......4/21/11 he weighed 261 lbs and now weighed out at 271 with water weight included........
His other meds that he claims put on ALL the weight was started in Jan. of 2011
Sunday, August 14, 2011
OOPs... Missed July!
Guess I missed July's Update..... Probably because there isn't much change.
At Tom's request and the encouragement of those that stay in touch with him but don't have to care for him and put up with his behavioral issues which is common and typical of this disease, have backed off on some of his behaviors meds which helped me stay safe and keep him in the realms of our 30 acres. He feels better he says in the fact he is more alert WHEN he does get up and more energy which only puts him back on his 4-wheeler and out of the safety of our home.
I totally understand the people who love Tom don't like to see him in a calm submissive state because it is so out of character from who he was...... BUT what they do NOT get is that he IS NOT who he was....... AT ALL. Not even kind-a.
I know they do not realize they are putting him in danger and me. They make excuses for his behavior not wanting to accept what is but that is not helping him or me.......
Anyway.... here is a little story that took place last evening......
Tom was out bumming around on his 4-wheeler most of the day. He popped in now and then just to take off again to who knows where. I don't.......
I'll take a moment here to respond to those that say I need to make him stay in the yard... do what you have to to keep him off the 4-wheeler.
Well A.... I had that problem solved peacefully with meds. KEY word HAD!
B.... Have you ever tried to stop a train?
C.....Have you ever stirred up a hornets nest?
I'll leave you to ponder that.....
Back to story......
SO..... around 5:00 p.m....... Tom came in the house chuckling. The "old couple" down the road had some guy with a small boat pulling their pontoon boat from their place to the landing close to our place......
He was chuckling because he thought it was going to really funny to sit on the bridge and watch them struggle to get that pontoon boat loaded on the trailer.
Now the "Old Lady for some ? reason does not like Tom. The Old Man is Tom's buddy. The other guy with the small boat is some Good Samaritan who offered to help this Old Couple get their pontoon out of the water.
SO I asked to go watch the ordeal with him. He was happy to have someone along to laugh with him. (NOT MY INTENTION)..... Birds eye view from the bridge.
Soon the little boat came around the corner of the river pulling the pontoon boat into sight. The Old Lady (respectively) was on the pontoon and the Old Man was in the small boat.....
I seen trouble arising as they were nearing the landing.... "Should we go help them?" I asked? "I don't know if we should or not" was his answer. "I think we should... it's what God would want us to do".... I replied.
He responded to that and and drove us down to the landing. They threw Tom the line from the pontoon.... He looked confused but I figured he was okay because he only had to hang on to it.....
I pulled the small boat to shore so the men could get out..... I had to help the Old Man who was not very stead on his feet. I grabbed hold of him to steady him as he was stepping out... teasing him that he was on his own if he fell in the river.
The Old Man went to back his truck and trailer down the ramp. Tom continued to hold the rope not really knowing what to do. It could have been tied to tree......
The Old Man released the rope and hook from the trailer to attach to the pontoon to pull the pontoon onto the trailer. There it lay..... We then had Old Lady sitting on the pontoon... Tom standing there holding a rope .... the Good Samaritan in his boat, trying to pull the pontoon back into the water to line it up on the trailer....
This is where I realized Tom was not barking orders at me to help him get the pontoon lined up etc...... he was standing there NOT knowing what to do.
I jumped into action and went into the water up to my waist to hook the rope to the pontoon and releasing the one Tom was holding and then guide it over some posts on the trailer ........ The Old Man pulled ahead and the pontoon was loaded........
The reason I am telling this story is to point out how Tom did not know what to do.... if he got in trouble on the trails .... weather he got stuck or broke down.... HE WOULD NOT KNOW WHAT TO DO!!!!!!!
I think I will end here.... I think the rest is self explanatory to anyone who still has a full deck...... Tom is missing way to many cards to be out playing any more. And I think he is out of wild cards too.
At Tom's request and the encouragement of those that stay in touch with him but don't have to care for him and put up with his behavioral issues which is common and typical of this disease, have backed off on some of his behaviors meds which helped me stay safe and keep him in the realms of our 30 acres. He feels better he says in the fact he is more alert WHEN he does get up and more energy which only puts him back on his 4-wheeler and out of the safety of our home.
I totally understand the people who love Tom don't like to see him in a calm submissive state because it is so out of character from who he was...... BUT what they do NOT get is that he IS NOT who he was....... AT ALL. Not even kind-a.
I know they do not realize they are putting him in danger and me. They make excuses for his behavior not wanting to accept what is but that is not helping him or me.......
Anyway.... here is a little story that took place last evening......
Tom was out bumming around on his 4-wheeler most of the day. He popped in now and then just to take off again to who knows where. I don't.......
I'll take a moment here to respond to those that say I need to make him stay in the yard... do what you have to to keep him off the 4-wheeler.
Well A.... I had that problem solved peacefully with meds. KEY word HAD!
B.... Have you ever tried to stop a train?
C.....Have you ever stirred up a hornets nest?
I'll leave you to ponder that.....
Back to story......
SO..... around 5:00 p.m....... Tom came in the house chuckling. The "old couple" down the road had some guy with a small boat pulling their pontoon boat from their place to the landing close to our place......
He was chuckling because he thought it was going to really funny to sit on the bridge and watch them struggle to get that pontoon boat loaded on the trailer.
Now the "Old Lady for some ? reason does not like Tom. The Old Man is Tom's buddy. The other guy with the small boat is some Good Samaritan who offered to help this Old Couple get their pontoon out of the water.
SO I asked to go watch the ordeal with him. He was happy to have someone along to laugh with him. (NOT MY INTENTION)..... Birds eye view from the bridge.
Soon the little boat came around the corner of the river pulling the pontoon boat into sight. The Old Lady (respectively) was on the pontoon and the Old Man was in the small boat.....
I seen trouble arising as they were nearing the landing.... "Should we go help them?" I asked? "I don't know if we should or not" was his answer. "I think we should... it's what God would want us to do".... I replied.
He responded to that and and drove us down to the landing. They threw Tom the line from the pontoon.... He looked confused but I figured he was okay because he only had to hang on to it.....
I pulled the small boat to shore so the men could get out..... I had to help the Old Man who was not very stead on his feet. I grabbed hold of him to steady him as he was stepping out... teasing him that he was on his own if he fell in the river.
The Old Man went to back his truck and trailer down the ramp. Tom continued to hold the rope not really knowing what to do. It could have been tied to tree......
The Old Man released the rope and hook from the trailer to attach to the pontoon to pull the pontoon onto the trailer. There it lay..... We then had Old Lady sitting on the pontoon... Tom standing there holding a rope .... the Good Samaritan in his boat, trying to pull the pontoon back into the water to line it up on the trailer....
This is where I realized Tom was not barking orders at me to help him get the pontoon lined up etc...... he was standing there NOT knowing what to do.
I jumped into action and went into the water up to my waist to hook the rope to the pontoon and releasing the one Tom was holding and then guide it over some posts on the trailer ........ The Old Man pulled ahead and the pontoon was loaded........
The reason I am telling this story is to point out how Tom did not know what to do.... if he got in trouble on the trails .... weather he got stuck or broke down.... HE WOULD NOT KNOW WHAT TO DO!!!!!!!
I think I will end here.... I think the rest is self explanatory to anyone who still has a full deck...... Tom is missing way to many cards to be out playing any more. And I think he is out of wild cards too.
Thursday, June 16, 2011
Reality Of This Disease Hit's Hard
All winter Tom sat at the table staring out the window at the GARAGE TO BE. He wondered every day if it would really happen. ( I have read that negative thoughts "it's not going to happen..... they won't show up... it won't be ready.... why does everything happen to me..... etc ARE par for the coarse of this disease.)
In March Tom called around for estimates for the supplies it would take to build his "dream garage". He decided on where he would buy his lumber and we went and paid for it in full even though he knew it would a few months before construction could begin.
He kept telling everybody that him and I could build it ourselves. There was a day when we could have but not now. His TWIN BROTHER Teddy offered to put it up. He so generously put his life aside to come put up the garage for Tom.
Our friend and neighbor did the dirt work ...... People who knew and loved Tom could see him slip sliding away and this was a dramatic attempt to get his engine restarted.
Living with Tom I knew it was the disease doing what it does best and there just isn't anyway in hell to stop it.
As the project got off the ground Teddy and others are seeing that there is NO WAY to cut through the fog and destruction this horrific disease has caused in his brain. It isn't depression, it isn't boredom, it isn't lack of resources...... it is the disease.
It's called apathy
noun
indifference, lack of interest, lack of enthusiasm, lack of concern, unconcern, uninterestedness, unresponsiveness, impassivity, dispassion, lethargy, languor, ennui; rare acedia.
That is just one part of his brain that has deteriorated to the point of no return.
I see and feel the pain others are feeling as they see his obvious losses. I put it in the same place I put all my pain from the losses I have experienced through all this. One day a time will come and I will be able to mourn freely of the love (TOM) I had and lost. I know and trust that God will see me through the after as he is seeing me through the now of one of the most horrific diseases that exist.
Today I rarely see the love I once seen in his eyes for me..... now I see a dead stare as he has been watching me.... It gives you a creepy eerie feeling as the eyes that are watching your every move are cold and dark. "Why are you staring at me?" I'll ask. He looks away but does not answer. Soon I notice he is doing it again.
Last night was a heart breaking realization to me as it was the 7th and final game for the Stanley Cup....... I pay for the biggest pkg. of Dish Network so Tom can get hockey games and I payed extra for the NHL channel......the last thing he still held an interest in......
Last night he lay on the bed to watch the game and every time I went to check on him he was sleeping?
Hopeless and Helpless is what I feel today.... an over all sadness as I watch his brother put shingles on the roof of the garage he is building for his brother...... his excitement and enthusiasm is gone.
I'm sure he is asking himself why is he doing this.... Tom won't be out here anyway......
In March Tom called around for estimates for the supplies it would take to build his "dream garage". He decided on where he would buy his lumber and we went and paid for it in full even though he knew it would a few months before construction could begin.
He kept telling everybody that him and I could build it ourselves. There was a day when we could have but not now. His TWIN BROTHER Teddy offered to put it up. He so generously put his life aside to come put up the garage for Tom.
Our friend and neighbor did the dirt work ...... People who knew and loved Tom could see him slip sliding away and this was a dramatic attempt to get his engine restarted.
Living with Tom I knew it was the disease doing what it does best and there just isn't anyway in hell to stop it.
As the project got off the ground Teddy and others are seeing that there is NO WAY to cut through the fog and destruction this horrific disease has caused in his brain. It isn't depression, it isn't boredom, it isn't lack of resources...... it is the disease.
It's called apathy
noun
indifference, lack of interest, lack of enthusiasm, lack of concern, unconcern, uninterestedness, unresponsiveness, impassivity, dispassion, lethargy, languor, ennui; rare acedia.
That is just one part of his brain that has deteriorated to the point of no return.
I see and feel the pain others are feeling as they see his obvious losses. I put it in the same place I put all my pain from the losses I have experienced through all this. One day a time will come and I will be able to mourn freely of the love (TOM) I had and lost. I know and trust that God will see me through the after as he is seeing me through the now of one of the most horrific diseases that exist.
Today I rarely see the love I once seen in his eyes for me..... now I see a dead stare as he has been watching me.... It gives you a creepy eerie feeling as the eyes that are watching your every move are cold and dark. "Why are you staring at me?" I'll ask. He looks away but does not answer. Soon I notice he is doing it again.
Last night was a heart breaking realization to me as it was the 7th and final game for the Stanley Cup....... I pay for the biggest pkg. of Dish Network so Tom can get hockey games and I payed extra for the NHL channel......the last thing he still held an interest in......
Last night he lay on the bed to watch the game and every time I went to check on him he was sleeping?
Hopeless and Helpless is what I feel today.... an over all sadness as I watch his brother put shingles on the roof of the garage he is building for his brother...... his excitement and enthusiasm is gone.
I'm sure he is asking himself why is he doing this.... Tom won't be out here anyway......
Sunday, May 1, 2011
The Disease Is Taking It's Toll....
My body has taken it's toll this past winter... I guess there comes a time in your life when you just have to give up some of the things your younger body could do....
My Mom always said... "the mind is willing but the flesh becomes weak"...... Myself I say... "the old gray mare she ain't what she use to be.......
No matter the saying I am realizing I need help...... I am seeking the medical attention I need to get myself put back the best it can be but my days of super women are over....
Watching my Mom choke on that pill years ago I prepared myself for the inevitable and am taking it like a champ....... But it isn't stopping me from finding other avenues to still do all I can and enjoy life to the fullest....... when one door closes another one opens for those who seek.......
With Tom in his "own" world and sometimes on his "own" planet... I am trying to move on... move forward. I'm not sure how.... but I do keep an open eye for opportunities to venture out beyond the gate of "Tom's World" as long as he is happy, content and safe.......
I find it hard to take joy in the things we shared...... especially with him right here and him being oblivious to what is ......... He took a big downward spiral in January and I am still trying to adjust to where that left him....... and trying to get those close to Tom to accept where he is........
Most caregivers would take offense to the questions I am asked but I don't feel any anger.... only compassion as I know they are not accusing me but just trying to grasp their minds around something as bazaar as this disease..... I struggle with it and I am living with it.
The hardest thing to see and accept is how this disease took Tom's "ambition.... get up & go.... his drive.... his want to." He even asked the Dr. if he could give him a pill to give him his ambition back..... That was heart breaking......
Now he doesn't carry a conversation.... people say they run out of things to talk about because he just sits there....... if the phone rings at 2:00 in the afternoon and he is still in bed he will say "I just got in from a ride in the woods." or if someone asks him what he did today... he will mention everything he can remember that I did or someone said they did...... hence "He sounds okay to me"
Tom sleeps till noon or later..... he hallucinates... talks to people that aren't there...... does things (motions) with his hands like he is doing something.... stares out the window for hours...
He is a shell of who he use to be....... Last night the neighbors dropped by for a few minutes...... She asked "don't you ever get bored or lonely out here?" I told her "bored????? NO.... lonely???? Yes......
I seen Tom hear and react to that...... guess he was listening..... later he asked me who I get lonely for. I smiled softly and looked him in the eyes.... "you" I said. He turned his head and went back to his blank stare.
My Mom always said... "the mind is willing but the flesh becomes weak"...... Myself I say... "the old gray mare she ain't what she use to be.......
No matter the saying I am realizing I need help...... I am seeking the medical attention I need to get myself put back the best it can be but my days of super women are over....
Watching my Mom choke on that pill years ago I prepared myself for the inevitable and am taking it like a champ....... But it isn't stopping me from finding other avenues to still do all I can and enjoy life to the fullest....... when one door closes another one opens for those who seek.......
With Tom in his "own" world and sometimes on his "own" planet... I am trying to move on... move forward. I'm not sure how.... but I do keep an open eye for opportunities to venture out beyond the gate of "Tom's World" as long as he is happy, content and safe.......
I find it hard to take joy in the things we shared...... especially with him right here and him being oblivious to what is ......... He took a big downward spiral in January and I am still trying to adjust to where that left him....... and trying to get those close to Tom to accept where he is........
Most caregivers would take offense to the questions I am asked but I don't feel any anger.... only compassion as I know they are not accusing me but just trying to grasp their minds around something as bazaar as this disease..... I struggle with it and I am living with it.
The hardest thing to see and accept is how this disease took Tom's "ambition.... get up & go.... his drive.... his want to." He even asked the Dr. if he could give him a pill to give him his ambition back..... That was heart breaking......
Now he doesn't carry a conversation.... people say they run out of things to talk about because he just sits there....... if the phone rings at 2:00 in the afternoon and he is still in bed he will say "I just got in from a ride in the woods." or if someone asks him what he did today... he will mention everything he can remember that I did or someone said they did...... hence "He sounds okay to me"
Tom sleeps till noon or later..... he hallucinates... talks to people that aren't there...... does things (motions) with his hands like he is doing something.... stares out the window for hours...
He is a shell of who he use to be....... Last night the neighbors dropped by for a few minutes...... She asked "don't you ever get bored or lonely out here?" I told her "bored????? NO.... lonely???? Yes......
I seen Tom hear and react to that...... guess he was listening..... later he asked me who I get lonely for. I smiled softly and looked him in the eyes.... "you" I said. He turned his head and went back to his blank stare.
Sunday, February 27, 2011
February ?
Here we are.. end of February already. It hasn't been too bad as Tom's meds are working well for him now.
Sometimes he thinks the medications ARE his problem and says he is going to quit taking them...... I reply with "It's your choice but if it were me and I was doing so well taking the meds... I'm not sure I would want to chance what would happen if I quit."
He says if he gets bad after stopping them he will just go back on them... I replied with..."That's all good BUT from what I have read... anyone stopping their meds and then going back on ..... don't go back to where they where but rather... they have declined more and can not get it back.........
I see him searching for the person he was and what he use to do..... He blames the pills on his lack of ambition and energy..... his tiredness...... and weight gain. It's probably true in part BUT without the medications he wouldn't be sitting here thinking about what all he has lost.
Tom is anxious for spring..... he thinks there will be more to do? We are planning on putting up a small garage but that can't begin till the road limits are lifted..... in April.
He believes he is going to get a BIG DOZER in here and take out all my trees because he is tired of mowing around them...... IF you read the main blog you know he doesn't mow anything...... he just wants to get in a dozer and MOVE some big stuff...... He was born with operating BIG equipment in his blood..... He misses it!
On warmer days he has been down in the woods watching the loggers and talking to a few people he knows.....He sometimes takes one of the older Girls (Mag or Lilly) as they miss the old times too.
Tom sleeps till noon these days which is nice for me.... It seems to be apart of his new self.... He doesn't like the fact he is so tired and can sleep so much but that once again HIM knowing the way he WAS and isn't NOW.
Tom has his wants and needs well taken care of... I see to that first..... if he is happy.. everybody is happy. It's just the way it is in this world with this disease.
The hardest thing to accept and adapt to is their selfish self centered-ness which wasn't there when it came to me till this disease took over.....
Point being .... me and the millions other spouses in my shoes... struggle to find me time.... somedays just being able to step outside the door and take in a breath of fresh air without hearing...."MOM??? WHERE ARE YOU?"
I am kept pretty busy just chasing after Tom and the Girls..... but there are times I find some free time on my hands and that is when I play with my projects..... I don't like to be idle for long......
Time on your hands just gives you time to think about all you are missing out on in the rest of the world..... and it serves no good purpose to even go there.... As a spousal caregiver to this disease it's best to make the best of the world you are confined too........ in hopes that you come out at the end still in tack to go on with your life.
It will be fun to see what March brings ....... We got so much snow this winter I expect spring to be plenty muddy so I am already working on "HOW TO KEEP THE MUD OUTSIDE" ....... Now with Tom and the 4 girls.... that is a big challenge! lol
Sometimes he thinks the medications ARE his problem and says he is going to quit taking them...... I reply with "It's your choice but if it were me and I was doing so well taking the meds... I'm not sure I would want to chance what would happen if I quit."
He says if he gets bad after stopping them he will just go back on them... I replied with..."That's all good BUT from what I have read... anyone stopping their meds and then going back on ..... don't go back to where they where but rather... they have declined more and can not get it back.........
I see him searching for the person he was and what he use to do..... He blames the pills on his lack of ambition and energy..... his tiredness...... and weight gain. It's probably true in part BUT without the medications he wouldn't be sitting here thinking about what all he has lost.
Tom is anxious for spring..... he thinks there will be more to do? We are planning on putting up a small garage but that can't begin till the road limits are lifted..... in April.
He believes he is going to get a BIG DOZER in here and take out all my trees because he is tired of mowing around them...... IF you read the main blog you know he doesn't mow anything...... he just wants to get in a dozer and MOVE some big stuff...... He was born with operating BIG equipment in his blood..... He misses it!
On warmer days he has been down in the woods watching the loggers and talking to a few people he knows.....He sometimes takes one of the older Girls (Mag or Lilly) as they miss the old times too.
Tom sleeps till noon these days which is nice for me.... It seems to be apart of his new self.... He doesn't like the fact he is so tired and can sleep so much but that once again HIM knowing the way he WAS and isn't NOW.
Tom has his wants and needs well taken care of... I see to that first..... if he is happy.. everybody is happy. It's just the way it is in this world with this disease.
The hardest thing to accept and adapt to is their selfish self centered-ness which wasn't there when it came to me till this disease took over.....
Point being .... me and the millions other spouses in my shoes... struggle to find me time.... somedays just being able to step outside the door and take in a breath of fresh air without hearing...."MOM??? WHERE ARE YOU?"
I am kept pretty busy just chasing after Tom and the Girls..... but there are times I find some free time on my hands and that is when I play with my projects..... I don't like to be idle for long......
Time on your hands just gives you time to think about all you are missing out on in the rest of the world..... and it serves no good purpose to even go there.... As a spousal caregiver to this disease it's best to make the best of the world you are confined too........ in hopes that you come out at the end still in tack to go on with your life.
It will be fun to see what March brings ....... We got so much snow this winter I expect spring to be plenty muddy so I am already working on "HOW TO KEEP THE MUD OUTSIDE" ....... Now with Tom and the 4 girls.... that is a big challenge! lol
Sunday, January 30, 2011
January Melt Down
It started out ...the first part of January.... Tom begin to talk in his sleep. It was kinda cute... he' d laugh and giggle... they were happy dreams.
Well eventually the dreams became more a part of reality to him as he started hand movements, which in turn escalated to sleep walking. Nope it didn't stop there.
He ended up not knowing what was real or dream. He went back to work in Colorado where he had a very demanding job..... he told me it was as real as can be. He knew he was in his house and was running this black top plant with all the old guys right here in our house. Tom didn't sleep for near a week. Let me leave it there...
It was the most bizarre thing I have ever experienced. Where I live the choices are few. None of them good. So our one Dr. who deals with the meds for dementia people agreed to "try" to get Tom back.
He only agreed after talking to me and found I was very realistic about this disease, had a good support system and founded me very grounded.
He told me I have done an excellent job with caring for Tom and added quality to his life beyond what he has seen. He also noted Tom would have been institutionalized a long time ago if It weren't for me........ I knew that but was really nice hearing those words from his lips.
We have Tom back now.... not quite the same but better than I had expected.
So life goes on..... not too much different than it was..... And we have only God to thank for bringing Tom back to where he is now.
And I hold the deepest respect and gratitude for the Dr. who thought Tom was worth a try.....
I am finding that people with this disease are disposable....... how sad! No you can't STOP or CURE this disease BUT they can be given QUALITY of life..... not all but that's where everybody gets thrown into one bucket.
The first response I got when I asked for help was..... he isn't going to get any better.... you can't stop this disease from doing what it wants..... maybe it's time to just put him away...... why are you doing all this for this one man.
I also have to mention, speaking of gratitude....... I have found that the most unexpected of people from our community have reached out with a helping hand..... This day and age you don't see that like the old days where everybody looked out for there neighbor.
Tom was one of those guys..... always lending a helping hand.... he would give his last dollar, last cigarette and the shirt off his back....... Something to ponder.
Well eventually the dreams became more a part of reality to him as he started hand movements, which in turn escalated to sleep walking. Nope it didn't stop there.
He ended up not knowing what was real or dream. He went back to work in Colorado where he had a very demanding job..... he told me it was as real as can be. He knew he was in his house and was running this black top plant with all the old guys right here in our house. Tom didn't sleep for near a week. Let me leave it there...
It was the most bizarre thing I have ever experienced. Where I live the choices are few. None of them good. So our one Dr. who deals with the meds for dementia people agreed to "try" to get Tom back.
He only agreed after talking to me and found I was very realistic about this disease, had a good support system and founded me very grounded.
He told me I have done an excellent job with caring for Tom and added quality to his life beyond what he has seen. He also noted Tom would have been institutionalized a long time ago if It weren't for me........ I knew that but was really nice hearing those words from his lips.
We have Tom back now.... not quite the same but better than I had expected.
So life goes on..... not too much different than it was..... And we have only God to thank for bringing Tom back to where he is now.
And I hold the deepest respect and gratitude for the Dr. who thought Tom was worth a try.....
I am finding that people with this disease are disposable....... how sad! No you can't STOP or CURE this disease BUT they can be given QUALITY of life..... not all but that's where everybody gets thrown into one bucket.
The first response I got when I asked for help was..... he isn't going to get any better.... you can't stop this disease from doing what it wants..... maybe it's time to just put him away...... why are you doing all this for this one man.
I also have to mention, speaking of gratitude....... I have found that the most unexpected of people from our community have reached out with a helping hand..... This day and age you don't see that like the old days where everybody looked out for there neighbor.
Tom was one of those guys..... always lending a helping hand.... he would give his last dollar, last cigarette and the shirt off his back....... Something to ponder.
Saturday, January 15, 2011
Update....
Living with Alzheimer's in our life keeps me pretty busy caring for Tom and the girls... One does not realize what that requires. Some outsiders think I just hang out with nothing but time on my hands ...... and I say to them your welcome to walk my shoes for a day as I could use the break.
I stay focused on the positives in each and everyday..... I don't take the time to waddle in self pity as that would be just throwing precious life away..... God has given me a very special job to do and I give it my all....
I have been able to detach from what was and I am so busy with what is and the ever changing circumstances of every day that I don't have time to miss what was or what we were planning for our future.... "Our Golden Years"
I have found peace in my heart and in my soul living my life for God. Taking care of this man who has been inflicted with this unmerciful disease..... I imagine where he is ... lost in his own mind... depending on ME to take care of his needs and keep him safe...... and when he trails back to the past I go with him..... he is not alone.... I hold his hand in past and present.
He feels and responds to my love for him and trusts me completely. It's scary at times for him when he isn't sure what is real.... but I tell him it's okay.... where we live...... real is where and what we want it to be...... He is comforted by that as he knows where ever he is in his mind... I will be there with him.
I see in his eyes sometimes fear..... fear when he realizes he isn't who he was.... when something has happened that he is aware of that is unlike who he was. I make light of it and we laugh.
With my attitude to enjoy what we have today and let go of the things we can not change, and stuff is stuff, it doesn't make or break our lives as we live it...... We swiftly move past the small stuff.....
I keep the atmosphere happy, joyful, and as fun as I can.....trying to keep him stimulated without pushing him over the edge.... somedays he is just not here and seems to want to be alone...... as he works so hard to stay grounded.... those days I maintain the light atmosphere but in a quiet sort of way.....
I do get frustrated at times and could wring his neck but when I actually think about what pissed me off... it's kind of funny...... of coarse I don't react in front of him so I have time to think about how ridiculous what he said that rubbed me the wrong way, was....
Tom is a man of few words these days but let me tell you by night it is none stop talk.... He is clear and makes total sense..... by day it's a whole different story. lol
When he is in this dream / talking / acting out state... we can interact with each other.... he usually wakes in the middle of it and starts laughing realizing what he his doing for a second and than starts right back at it again...... I told him he has me and the girls totally entertained .... he laughs and thinks it's funny as he does not have nightmares like when he first started this journey.
Tom at this point has given up doing anything at all...... instead he sits and thinks about all the things he doesn't have and if only had them he could do this or that.....
He thinks it is lack of having certain things that keep him from doing anything at all.
Till now this disease has made our life ALL about TOM.... than I slowly became aware that it isn't ALL about him.... it's about ALL of us that are connected to him.... this disease is effecting and touching everyone that is a part of our lives in some way....
So without taking away from Tom's needs, life and security I find creative ways to still find something for myself and to stay in some way a part of the lives of others that are important to me......
That is important because my health and frame of mind directly effects Tom's care. I haven't found a way to get respite so at times I get pretty tired and wore down....
Keep us in your prayers as we have still a long way to go..... And thanks to all who support us, stand beside us and are there to give us a helping hand when needed.
There are people who don't know us but know about us who have helped us "because they can" to you I say "GOD BLESS!"
I stay focused on the positives in each and everyday..... I don't take the time to waddle in self pity as that would be just throwing precious life away..... God has given me a very special job to do and I give it my all....
I have been able to detach from what was and I am so busy with what is and the ever changing circumstances of every day that I don't have time to miss what was or what we were planning for our future.... "Our Golden Years"
I have found peace in my heart and in my soul living my life for God. Taking care of this man who has been inflicted with this unmerciful disease..... I imagine where he is ... lost in his own mind... depending on ME to take care of his needs and keep him safe...... and when he trails back to the past I go with him..... he is not alone.... I hold his hand in past and present.
He feels and responds to my love for him and trusts me completely. It's scary at times for him when he isn't sure what is real.... but I tell him it's okay.... where we live...... real is where and what we want it to be...... He is comforted by that as he knows where ever he is in his mind... I will be there with him.
I see in his eyes sometimes fear..... fear when he realizes he isn't who he was.... when something has happened that he is aware of that is unlike who he was. I make light of it and we laugh.
With my attitude to enjoy what we have today and let go of the things we can not change, and stuff is stuff, it doesn't make or break our lives as we live it...... We swiftly move past the small stuff.....
I keep the atmosphere happy, joyful, and as fun as I can.....trying to keep him stimulated without pushing him over the edge.... somedays he is just not here and seems to want to be alone...... as he works so hard to stay grounded.... those days I maintain the light atmosphere but in a quiet sort of way.....
I do get frustrated at times and could wring his neck but when I actually think about what pissed me off... it's kind of funny...... of coarse I don't react in front of him so I have time to think about how ridiculous what he said that rubbed me the wrong way, was....
Tom is a man of few words these days but let me tell you by night it is none stop talk.... He is clear and makes total sense..... by day it's a whole different story. lol
When he is in this dream / talking / acting out state... we can interact with each other.... he usually wakes in the middle of it and starts laughing realizing what he his doing for a second and than starts right back at it again...... I told him he has me and the girls totally entertained .... he laughs and thinks it's funny as he does not have nightmares like when he first started this journey.
Tom at this point has given up doing anything at all...... instead he sits and thinks about all the things he doesn't have and if only had them he could do this or that.....
He thinks it is lack of having certain things that keep him from doing anything at all.
Till now this disease has made our life ALL about TOM.... than I slowly became aware that it isn't ALL about him.... it's about ALL of us that are connected to him.... this disease is effecting and touching everyone that is a part of our lives in some way....
So without taking away from Tom's needs, life and security I find creative ways to still find something for myself and to stay in some way a part of the lives of others that are important to me......
That is important because my health and frame of mind directly effects Tom's care. I haven't found a way to get respite so at times I get pretty tired and wore down....
Keep us in your prayers as we have still a long way to go..... And thanks to all who support us, stand beside us and are there to give us a helping hand when needed.
There are people who don't know us but know about us who have helped us "because they can" to you I say "GOD BLESS!"
Monday, October 4, 2010
The "Rose"
We have had some pretty hard frosts lately....... as a result the leaves are raining off the trees as the wind blows them around on the ground.... with the sun shinning and the warm temps it couldn't be a more beautiful and peaceful atmosphere........
The girls scamper and play in the yard... Sarah is bringing all the sticks she can find in the woods into the yard as Emily just helps herself to Dad's wood pile..... at the end of the day I go out and pick up there mess so tomorrow they can start anew.....
I carry a sadness in my heart that won't go away.... as Tom slowly retreats to "his own little world" happy as a lark as the woods is where he loves to be ..... he isn't aware of the WE that this disease is stealing from US and the loneliness I feel as he drifts off ........
Doing everything myself keeps me busy and the girls keep me company and GOD sends me little things to brighten my day and bring a smile to my face telling me.... you're really not alone... I am here with you......
The girls scamper and play in the yard... Sarah is bringing all the sticks she can find in the woods into the yard as Emily just helps herself to Dad's wood pile..... at the end of the day I go out and pick up there mess so tomorrow they can start anew.....
I carry a sadness in my heart that won't go away.... as Tom slowly retreats to "his own little world" happy as a lark as the woods is where he loves to be ..... he isn't aware of the WE that this disease is stealing from US and the loneliness I feel as he drifts off ........
Doing everything myself keeps me busy and the girls keep me company and GOD sends me little things to brighten my day and bring a smile to my face telling me.... you're really not alone... I am here with you......
Sunday, October 3, 2010
Up & Down & Around We Go.......
The ups and downs of this disease is quite trying on one particular care giver.... Yes... me. I get close to saying "I CAN"T DO IT ANYMORE!
Then Gods says... yes you can! I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....
Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone....
I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....
This is the conversation between my daughter and me the next morning.... texting.
U ok?....... YUP! : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.
My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?".... just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."
Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad..... especially after I heard his interpretation of what took place..... It didn't match mine.
Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind. I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would. This is our emotional relationship...
In reality Tom knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us. We live in the woods and interact with others when and with whom we choose?
Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him... After YEARS of trying to find the cause / source...... it appears it's triggered in the brain. Is STRESS / FEAR the trigger?
By now you should be able to put together the rest of the story....... The specifics are not important....
I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is....... am I going to make it?
Then Gods says... yes you can! I say I don't want to.... God says you have to... I chose YOU because this is the job I readied you for.... Tom is a difficult child but he is a child of mine and I need you to see him through this.....
Yesterday I went for a walk in the woods because I had reached a point ...... one in which I needed to walk away...... Tom seen me leave... and I left the girls in the house as I really needed to be alone....
I returned three hours later to a hysterical TOM who had rounded up a posse to go in search of me.....
This is the conversation between my daughter and me the next morning.... texting.
U ok?....... YUP! : )........ Tom freaked out:-§....... I know....... Its hard 2 escape 4 awhile when u r on a short chain!......... Yupppp!!!!!........ Remember when i tried 2 put dusty (cat) on a string?.......... No.. how did that turn out?.......... Gag! Choke! Gasp! Cough! The more she pulled the tighter it got. She looked epileptic. Never did that again!......... ha ha ha...Toms awake... gotta go.
My 9 year old Granddaughter called..... "Gramma are you okay?'......."I'm fine sweetie"......."where did you go?".... just for a walk in the woods"..... "You scared Grampa really really bad.".... "I know, I didn't mean too"..... "you shouldn't do that, he was really scared."
Tom suffered ultimately for the emotional turmoil I put him through... though unintentional I feel bad..... especially after I heard his interpretation of what took place..... It didn't match mine.
Tom trusts me like a parent / child relationship....... To him I am a ROCK... I know all and can do anything, in his mind. I am someone with strong sound morals.... will give my all to protect my children (him & the girls ) and he loves and trust his MOM like any small child would. This is our emotional relationship...
In reality Tom knows I'm his wife, the love of his life, soul mate...... but mentally he can't function as a husband, the other half of us....... so we slowly worked into this Mom / child relationship adding the girls as more kids...... this works for us. We live in the woods and interact with others when and with whom we choose?
Tom suffers from unbearable pains that SHOOT through a specific part of his leg like lightening bolts...... every few minutes one shoots through crippling him... After YEARS of trying to find the cause / source...... it appears it's triggered in the brain. Is STRESS / FEAR the trigger?
By now you should be able to put together the rest of the story....... The specifics are not important....
I just can't stop thinking about what a long, slow, destructive, life changing, cruel, unfair, tormenting, gut wrenching, heart breaking, lonely disease this is....... am I going to make it?
Tuesday, September 21, 2010
The Lord Is My Shepherd......
Sunday, September 19, 2010
Well the party was over as the alien (ALZ) that invades my husband's mind and calls his body home returned...... with a vengeance.
He was MEAN and ORNERY...... I played Merry-Go-Round with people telling me.... "I'm sorry..... he's booked for a year"..... we can put you on his cancellation list but it's long and that can take a year........
THIS IS AN EMERGENCY!!!!!!!!! CAN YOU HEAR ME NOW???????
Tom was breaking my heart even though he had nothing nice to say.... he said he hated how he felt and he was trying with all his might to control the meanness that was only escalating in him...... but he couldn't stop it... it controlled him.....
Day four of trying to get him into the over booked... one person in our community that knew what to do.... I had to give it to GOD .... I told my daughter, I sat by the phone for 4 days and got no help....... doesn't anybody out there CARE??????
My two daughters that live in the same area, took over...... By the end of the day Tom had an apt with "The Main Doc" in NOVEMBER, who is over booked trying to handle a whole community ......... and was put on the TOP of the cancellation list and he had an apt with his regular Doc the next day, with the understanding he was a problem "child" and was to be taken in right away....... to prevent a scene like the last visit to the clinic just for blood .
NOTE.... to those I have lost in this story let me explain...... Tom has only been seeing his regular DR. since diagnosis.... "2006" who has consulted the Psychiatrist as far as Alzheimer meds.....
All was well till now..... He NEEDS to be evaluated as every person with ALZ is different and they all react to medications different and going out of town is NOT an option for us and all his drugs seem to have stopped working except for the last med to control anger but the dosage needed to be regulated......
THAT requires a PSYCHIATRIST!
All went well with his regular DR. visit... He willingly took the one med that works for him to help him behave himself...... and they took him right away as promised..... and he upped his anti-angry med till he could see THE MAIN DOC.... for evaluation.
By the time we got home the clinic had called and Tom has an apt with MR. MAIN DOC on Monday...... WE ARE ECSTATIC!!!!!!
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
It has taken time.... with denial and acceptance...... Tom has totally accepted his diagnosis..... and for some reason, not all are aware, he is aware of his actions BUT says it's like someone else driving the car with him in the driver seat....."my words"
The "one" drug that is working and dosage has been increased...... has put him at peace and given him control of the wheel again......
NOW that doesn't mean he makes good choices, can reason, remember, multitask..... and the list goes on...... BUT he at least doesn't do it all with a smile on his face and laughter in his voice and he LOVES HIS MOM...... that's me
He was MEAN and ORNERY...... I played Merry-Go-Round with people telling me.... "I'm sorry..... he's booked for a year"..... we can put you on his cancellation list but it's long and that can take a year........
THIS IS AN EMERGENCY!!!!!!!!! CAN YOU HEAR ME NOW???????
Tom was breaking my heart even though he had nothing nice to say.... he said he hated how he felt and he was trying with all his might to control the meanness that was only escalating in him...... but he couldn't stop it... it controlled him.....
Day four of trying to get him into the over booked... one person in our community that knew what to do.... I had to give it to GOD .... I told my daughter, I sat by the phone for 4 days and got no help....... doesn't anybody out there CARE??????
My two daughters that live in the same area, took over...... By the end of the day Tom had an apt with "The Main Doc" in NOVEMBER, who is over booked trying to handle a whole community ......... and was put on the TOP of the cancellation list and he had an apt with his regular Doc the next day, with the understanding he was a problem "child" and was to be taken in right away....... to prevent a scene like the last visit to the clinic just for blood .
NOTE.... to those I have lost in this story let me explain...... Tom has only been seeing his regular DR. since diagnosis.... "2006" who has consulted the Psychiatrist as far as Alzheimer meds.....
All was well till now..... He NEEDS to be evaluated as every person with ALZ is different and they all react to medications different and going out of town is NOT an option for us and all his drugs seem to have stopped working except for the last med to control anger but the dosage needed to be regulated......
THAT requires a PSYCHIATRIST!
All went well with his regular DR. visit... He willingly took the one med that works for him to help him behave himself...... and they took him right away as promised..... and he upped his anti-angry med till he could see THE MAIN DOC.... for evaluation.
By the time we got home the clinic had called and Tom has an apt with MR. MAIN DOC on Monday...... WE ARE ECSTATIC!!!!!!
>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>
It has taken time.... with denial and acceptance...... Tom has totally accepted his diagnosis..... and for some reason, not all are aware, he is aware of his actions BUT says it's like someone else driving the car with him in the driver seat....."my words"
The "one" drug that is working and dosage has been increased...... has put him at peace and given him control of the wheel again......
NOW that doesn't mean he makes good choices, can reason, remember, multitask..... and the list goes on...... BUT he at least doesn't do it all with a smile on his face and laughter in his voice and he LOVES HIS MOM...... that's me
<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<
NOW how in the world did my daughters, particularly the one I call "the nut that fell closest to the tree?????????".... I heard she threw herself in front of the train and the train stopped!
Sunday, July 18, 2010
NEEDING To Vent!
Since Tom's diagnosis... I have read and researched till I was blue in the face.... I have tried many things suggested on how to deal with this horrible disease..... how to talk with him... how to ignore and walk away.... how to "stop... drop.. and roll" when he explodes and than vanish into thin air till he calms....... through trial and much error I figured out how to "pretty much" handle Tom.
There are no two alike so I had to figure out what works with Tom... and accept what is and let go of what was....... it's been the biggest challenge of my life.
Now I understand from the outside looking in... it "looks like" I just spoil Tom rotten to the core.... and that there is nothing wrong with him and he is just enjoying his skate like........ and I am just ignorant and blind to the fact that he just has me fooled........
I have been challenged by outsiders who see nothing wrong... he seems normal to them......
SO THEY..... encourage him to do the very things that I convinced him I LOVE doing ....... so he need not worry about it but just go enjoy doing what he "feels like" doing.
It's called keeping him SAFE in my book and in others it "looks like" I spoil him.
I DO NOT want him in the kitchen... he leaves burners on... he walks away when cooking food... punches hours on the micro wave instead of minutes or seconds.... he leaves the water running in the sink and walks away when attempting to do dishes......
I don't want an air conditioner because.... he opens all the windows... to let air in when it is 90 above with 100% humidity and sleeps with two heavy blankets when its that warm...... I CAN"T Afford The Electricity To Cool The Outside......
I don't want the wood stove hooked up for obvious SAFTY reasons........ AND you earned the RIGHT to drink if you have been tagged with a disease.... doesn't work with Alzheimer's.... You give him alcohol........ you keep him till he is sober.....
BECAUSE HE CAN RUN heavy equipment doesn't mean he should..... It could turn out bad ...... in fact it just usually does.
Because he knows how to TALK TRAPPING doesn't mean he remembers how.......
IF you are going to encourage him to wonder away from our area than YOU TAKE HIM TRAPPING WITH YOU!
Because one of our girls is a hunting breed...... doesn't mean she has to hunt... maybe she just wants to be Ma Ma's Baby and is afraid of loud noises..... and doesn't want to be the recipient of a very large stick to be taught to OBEY!
My point is... if you don't want him than mind your own business and keep your opinions to yourself if you have NO HANDS ON experience with this disease. You don't know JACK SHIT about nothing and in the end...... The Girls and I Pay for it........
AND NO he did not do well the day I left him to go berry picking.....MY DAY OFF.....
I did do it knowing there would be repercussions but he wanted so bad to show me he COULD do it....
Yes he was okay BUT the STRESS of me being gone and the FEAR of something happening to me showed up the next day.....he went down hill all day and ended in an explosion at the end...... the girls and I had to leave till he calmed down........
There are no two alike so I had to figure out what works with Tom... and accept what is and let go of what was....... it's been the biggest challenge of my life.
Now I understand from the outside looking in... it "looks like" I just spoil Tom rotten to the core.... and that there is nothing wrong with him and he is just enjoying his skate like........ and I am just ignorant and blind to the fact that he just has me fooled........
I have been challenged by outsiders who see nothing wrong... he seems normal to them......
SO THEY..... encourage him to do the very things that I convinced him I LOVE doing ....... so he need not worry about it but just go enjoy doing what he "feels like" doing.
It's called keeping him SAFE in my book and in others it "looks like" I spoil him.
I DO NOT want him in the kitchen... he leaves burners on... he walks away when cooking food... punches hours on the micro wave instead of minutes or seconds.... he leaves the water running in the sink and walks away when attempting to do dishes......
I don't want an air conditioner because.... he opens all the windows... to let air in when it is 90 above with 100% humidity and sleeps with two heavy blankets when its that warm...... I CAN"T Afford The Electricity To Cool The Outside......
I don't want the wood stove hooked up for obvious SAFTY reasons........ AND you earned the RIGHT to drink if you have been tagged with a disease.... doesn't work with Alzheimer's.... You give him alcohol........ you keep him till he is sober.....
BECAUSE HE CAN RUN heavy equipment doesn't mean he should..... It could turn out bad ...... in fact it just usually does.
Because he knows how to TALK TRAPPING doesn't mean he remembers how.......
IF you are going to encourage him to wonder away from our area than YOU TAKE HIM TRAPPING WITH YOU!
Because one of our girls is a hunting breed...... doesn't mean she has to hunt... maybe she just wants to be Ma Ma's Baby and is afraid of loud noises..... and doesn't want to be the recipient of a very large stick to be taught to OBEY!
My point is... if you don't want him than mind your own business and keep your opinions to yourself if you have NO HANDS ON experience with this disease. You don't know JACK SHIT about nothing and in the end...... The Girls and I Pay for it........
AND NO he did not do well the day I left him to go berry picking.....MY DAY OFF.....
I did do it knowing there would be repercussions but he wanted so bad to show me he COULD do it....
Yes he was okay BUT the STRESS of me being gone and the FEAR of something happening to me showed up the next day.....he went down hill all day and ended in an explosion at the end...... the girls and I had to leave till he calmed down........
Saturday, June 12, 2010
UnPredictable?
If you know anything about Alzheimer's you know it is unpredictable ........ It's not always a down slide or plateau .... Sometimes it goes the other way for awhile... a day.... a week.... sometimes more......... or less......
I hope not to jinx it but Tom has been SHOCKING me lately with his "old self" which is a very warm welcome as we could laugh together over nothing........
Don't get me wrong ..... it's a hit and miss thing BUT when it's a hit....... I soak up every second. The funny part is he doesn't seem aware of it.... ?????? He just thinks he's in a good mood and having a good day.
I had to do some business in town... I left the dishes and a mess the girls had made from the night before.... I told him I'd clean it up when I got home...... I make all trips to town in the morning because he will most times sleep till I get back.
When I got home.... to my shocking surprise... he had washed the dishes and put them away (some not in the right places) and cleaned up the main two rooms in the house.....(the girls messes.... they had shredded rope and sticks .... boredom from rainy days.)
He use to clean house because he enjoyed it..... now leaves a trail......I told him the results of my trip to town and kept it simple and factual and darn it when he went to translate what I said to his sisters.... well let's just say... it was not what came from my mouth. ha ha......
We played cribbage yesterday and I kicked his butt three times but he played well..... during the third game I could see confusion slightly creeping in and he said he didn't want to play any more. I could see he was pleased he remembered the game.
His new saying as of late is "your funny"....... when he isn't sure what was said..... you can see it is his eyes....... and the words are said with a child's tone of voice.... nothing I have ever heard before..... It's cute!
I hope not to jinx it but Tom has been SHOCKING me lately with his "old self" which is a very warm welcome as we could laugh together over nothing........
Don't get me wrong ..... it's a hit and miss thing BUT when it's a hit....... I soak up every second. The funny part is he doesn't seem aware of it.... ?????? He just thinks he's in a good mood and having a good day.
I had to do some business in town... I left the dishes and a mess the girls had made from the night before.... I told him I'd clean it up when I got home...... I make all trips to town in the morning because he will most times sleep till I get back.
When I got home.... to my shocking surprise... he had washed the dishes and put them away (some not in the right places) and cleaned up the main two rooms in the house.....(the girls messes.... they had shredded rope and sticks .... boredom from rainy days.)
He use to clean house because he enjoyed it..... now leaves a trail......I told him the results of my trip to town and kept it simple and factual and darn it when he went to translate what I said to his sisters.... well let's just say... it was not what came from my mouth. ha ha......
We played cribbage yesterday and I kicked his butt three times but he played well..... during the third game I could see confusion slightly creeping in and he said he didn't want to play any more. I could see he was pleased he remembered the game.
His new saying as of late is "your funny"....... when he isn't sure what was said..... you can see it is his eyes....... and the words are said with a child's tone of voice.... nothing I have ever heard before..... It's cute!
Wednesday, May 19, 2010
Good Day...Gone Bad
The day Sarah ate the rat poison (May 16 th blog) was a good day gone bad........ Even though Sarah was just fine after the fact....Tom couldn't come out of the spin it put him in.
He was terrified beyond words...... He loves his girls more than his own life. The words...."she will be fine"...... gave him only a moments peace but not lasting....
He was up and down like a yo-yo... (emotionally). His energy was going to be fixated on something but I wasn't sure what...... I kept a vigilant eye on him not knowing what he would do.
He ended up going off on how he hates the brush piles out by the county road..... He was going to burn them all.........
I handled "him" the way "I know" will calm him the fastest...... and I was able to keep him to two "small" piles and I was able to get the word out to a forester as to what was taking place.....(just in case)...... who knew Tom.... the area and the brush piles.
He finally calmed.... sitting on a five gallon bucket......watching the "camp fire" burn.
"Let's go home Mom!........ I'm tired."
These brush piles are on the very edge of the woods and some are in the woods.....
If it took off there would be no stopping it.......
There was a burning ban before the rain we just got. I don't know if it is lifted and it still requires a burning permit and than you usually can't start burning till seven at night.....
So it was a little stressful to say the least........ But all was well .... in our woods.... as the sun went down that evening.......
He was terrified beyond words...... He loves his girls more than his own life. The words...."she will be fine"...... gave him only a moments peace but not lasting....
He was up and down like a yo-yo... (emotionally). His energy was going to be fixated on something but I wasn't sure what...... I kept a vigilant eye on him not knowing what he would do.
He ended up going off on how he hates the brush piles out by the county road..... He was going to burn them all.........
I handled "him" the way "I know" will calm him the fastest...... and I was able to keep him to two "small" piles and I was able to get the word out to a forester as to what was taking place.....(just in case)...... who knew Tom.... the area and the brush piles.
He finally calmed.... sitting on a five gallon bucket......watching the "camp fire" burn.
"Let's go home Mom!........ I'm tired."
These brush piles are on the very edge of the woods and some are in the woods.....
If it took off there would be no stopping it.......
There was a burning ban before the rain we just got. I don't know if it is lifted and it still requires a burning permit and than you usually can't start burning till seven at night.....
So it was a little stressful to say the least........ But all was well .... in our woods.... as the sun went down that evening.......
Saturday, May 15, 2010
The Little Things
I guess it's the "little" things that make me stop and realize ........ this is real.... this is really happening.....
When I met Tom... it was the "little" things that meant the most to me ...... and made him different than anyone else.
The "little" things have been hitting me like a rock...... Taking my heart and stomping on it..... I've been talking about the obvious... I've accepted what is and going to be so I can take care of him to the best of my ability.....
but these little things are causing me some pain......
The significance of the Flowers (May 7th blog) he picked and gave to me....... for those who didn't understand.
Tom has become "The Center Of The Universe"....... though Sarah competes for the title also........... lol. The youngest child in the family and sometimes the first..... adopt this attitude as very young children........
I guess you could say Tom had lot's of practice as he was the Sun,The Moon & The Stars to his Dad.
When I met him I was that to him.....and have been "ALL" of that and more to him...... till this disease took over his brain.
BUT now..... to help those who knew Tom but not "US" ....... this has NOTHING to do with a learned behavior... "he always was" behavior......
THIS is the disease (Alzheimer's) taking over his brain and it's functions.
I was making a trip to town. Tom was still in bed as it was early. I was waiting for the coffee to finish brewing so I could take a to-go-ey cup with. I TOLD Tom that is what I waiting for........ he had already reaped the rewards of the first pot and planned on going back to sleep.
"MOM..." he yells from the bed room. "That's good enough... just pour me a cup out of what's there so you can go"............ "DEAD SILENCE" as I caught my breath...... "MOM?"......... "Okay honey!"...... I brought him coffee and left.
Tom is on his diet kick again...." Burger & Beans & Tomatoes & Hot Chili Peppers"...... (taste?== Alz.)
"Mom you don't have to eat this... You make whatever you want to eat and just don't worry about me" he tells me...... I said..."No problem....fine with me" He made a big batch so he could just warm a bowl as he wanted. (I watched inconspicuously to make sure of what he was putting in it etc......he's not allowed in the kitchen)
Next day I cooked up some grub for me and the girls..... Tom came in from outside. "Mom?.... what are you cooking?" .......... Some burger and veggies to put over rice." I answered thinking he was just curious what was on "my" menu.
He looked confused and asked "what's wrong with the "chili" I made?"......... I'm not eating that .... it's too hot." I replied. "No but I planned on eating my chili for super"..... "I know....." Now I'm confused......... "I'm making this for me and the girls...." I clarify. "OHHH!" he says sounding relieved. "I thought you were cooking that for ME."
Just a couple examples of a daily thing........
SO now you see....... the significance of him picking flowers for me.......And what it meant to me?
Tom is not aware of this behavior.... in his mind he loves me as much as the day we met and tells me so all the time... and I know he does and always will...... so he sees nothing has changed....... in his mind.
When I met Tom... it was the "little" things that meant the most to me ...... and made him different than anyone else.
The "little" things have been hitting me like a rock...... Taking my heart and stomping on it..... I've been talking about the obvious... I've accepted what is and going to be so I can take care of him to the best of my ability.....
but these little things are causing me some pain......
The significance of the Flowers (May 7th blog) he picked and gave to me....... for those who didn't understand.
Tom has become "The Center Of The Universe"....... though Sarah competes for the title also........... lol. The youngest child in the family and sometimes the first..... adopt this attitude as very young children........
I guess you could say Tom had lot's of practice as he was the Sun,The Moon & The Stars to his Dad.
When I met him I was that to him.....and have been "ALL" of that and more to him...... till this disease took over his brain.
BUT now..... to help those who knew Tom but not "US" ....... this has NOTHING to do with a learned behavior... "he always was" behavior......
THIS is the disease (Alzheimer's) taking over his brain and it's functions.
I was making a trip to town. Tom was still in bed as it was early. I was waiting for the coffee to finish brewing so I could take a to-go-ey cup with. I TOLD Tom that is what I waiting for........ he had already reaped the rewards of the first pot and planned on going back to sleep.
"MOM..." he yells from the bed room. "That's good enough... just pour me a cup out of what's there so you can go"............ "DEAD SILENCE" as I caught my breath...... "MOM?"......... "Okay honey!"...... I brought him coffee and left.
Tom is on his diet kick again...." Burger & Beans & Tomatoes & Hot Chili Peppers"...... (taste?== Alz.)
"Mom you don't have to eat this... You make whatever you want to eat and just don't worry about me" he tells me...... I said..."No problem....fine with me" He made a big batch so he could just warm a bowl as he wanted. (I watched inconspicuously to make sure of what he was putting in it etc......he's not allowed in the kitchen)
Next day I cooked up some grub for me and the girls..... Tom came in from outside. "Mom?.... what are you cooking?" .......... Some burger and veggies to put over rice." I answered thinking he was just curious what was on "my" menu.
He looked confused and asked "what's wrong with the "chili" I made?"......... I'm not eating that .... it's too hot." I replied. "No but I planned on eating my chili for super"..... "I know....." Now I'm confused......... "I'm making this for me and the girls...." I clarify. "OHHH!" he says sounding relieved. "I thought you were cooking that for ME."
Just a couple examples of a daily thing........
SO now you see....... the significance of him picking flowers for me.......And what it meant to me?
Tom is not aware of this behavior.... in his mind he loves me as much as the day we met and tells me so all the time... and I know he does and always will...... so he sees nothing has changed....... in his mind.
Friday, April 30, 2010
Forecast: Rain!
We have been doing the de-acf coffee now consistently.... and his medications have been taken at consistent times also and I see a calmness.......I asked if he has been feeling calmer in general lately and he said "yes and I've been feeling good too"....... he added. "Not so tired".......
He seems to be sleeping better at night and really well when he goes back to sleep in the morning for two hours.... he says that's his best........
He still flies off the handle easily but most of the time I can see a trigger which usually has to do with frustration due to his brain not working well for him. Or if I forget and interrupt his train of thought........ and of coarse if he thinks I'm telling him what he can or cannot do....... that goes with the no word..... all of which we try to remember not to say.
I think Tom is trying to adjust to "new loss" that he seems to be aware of.... he is fighting tooth and nail to hang on, which is good...... that's why he got so mad at me over a simple box.... he knew it should be simple but he couldn't figure it out.
We have some much needed rainy days ahead of us so I need to think of something to occupy him ........ yesterday was the first of the gloomy rainy days and he went into a slump and crabbed at me all day.
He says he's bored.... he doesn't love TV...... I don't know....... any ideas?
He seems to be sleeping better at night and really well when he goes back to sleep in the morning for two hours.... he says that's his best........
He still flies off the handle easily but most of the time I can see a trigger which usually has to do with frustration due to his brain not working well for him. Or if I forget and interrupt his train of thought........ and of coarse if he thinks I'm telling him what he can or cannot do....... that goes with the no word..... all of which we try to remember not to say.
I think Tom is trying to adjust to "new loss" that he seems to be aware of.... he is fighting tooth and nail to hang on, which is good...... that's why he got so mad at me over a simple box.... he knew it should be simple but he couldn't figure it out.
We have some much needed rainy days ahead of us so I need to think of something to occupy him ........ yesterday was the first of the gloomy rainy days and he went into a slump and crabbed at me all day.
He says he's bored.... he doesn't love TV...... I don't know....... any ideas?
Tuesday, April 20, 2010
Getting Better...
Tom had an episode last week end....I had to remove my self and the girls from the house so he could calm down as I could see he was escalating and wasn't about to stop.......
A reaction from me would add fuel to the fire and I NEVER react..... But I can also see he won't stop.... looking for a reaction. So when I remove myself if he doesn't remove himself..... it put's the fire out.
When my kids were little I would put them in their rooms and told them they were welcome to come out as soon as they calmed down...... well Tom is too big for me to physically put him in his room so I opt to remove myself right out of the house..... He calms quickly......
Tom is drinking coffee day and night..... I have now slipped in de-caf at night and after 3:00 pm. It's making a difference with the aid of his new medication.....
It's a work in progress......
A reaction from me would add fuel to the fire and I NEVER react..... But I can also see he won't stop.... looking for a reaction. So when I remove myself if he doesn't remove himself..... it put's the fire out.
When my kids were little I would put them in their rooms and told them they were welcome to come out as soon as they calmed down...... well Tom is too big for me to physically put him in his room so I opt to remove myself right out of the house..... He calms quickly......
Tom is drinking coffee day and night..... I have now slipped in de-caf at night and after 3:00 pm. It's making a difference with the aid of his new medication.....
It's a work in progress......
Friday, April 16, 2010
Obsessions-The Lawn Mower
Tom is at that fun stage where he gets something in his head and the whole day is wasted on this one obsession.
The lawn mower is a prime example. I have it taken care of via my daughter for the neighbor to pop over and in conversation offer Tom help on fixing up his lawn mower. He would than be compensated unknown to Tom. But the neighbor didn't show up before Tom decided the day had come to address that issue.
This is considered a project.... projects are not a good thing when it's only Tom and ME...... I avoid these situations at all cost.
But the neighbor didn't know that timing was an issue.... after all we need grass before you need the lawn mower and there is no rain in sight so he probably figured no ran no grass....... AND none of the neighbors see anything wrong with TOM..............
SO the next day after fighting to keep my head attached and all my digits (I need them all for counting) and the day wasted and my laundry room turned into a metal shop.....the neighbor stopped over to see how Tom was doing....
Hadn't seen him around..... AND he is such a nice guy that he told Tom he could find him a deck for his lawn mower and he'd help him get it fixed up and running.
WHEW!
After Terry left Tom said... "I'm going to have to milk this leg thing..... I said "what?"
"People feel bad about my knee .... that's why Terry is helping me" Okay I'm confused and asked "Is that what he said?"........ "Yah ... he seemed really concerned about it."
So last night on the phone .... Tom's bum knee turned into a torn ACL......???
His knee is causing him a lot of pain. When it feels good he uses it in the same way that causes it to hurt..... and so it has been a circle...... I now put a brace on it to REMIND him not to use it......... OR HE WILL NEED SURGERY..... So far that works.
The lawn mower is a prime example. I have it taken care of via my daughter for the neighbor to pop over and in conversation offer Tom help on fixing up his lawn mower. He would than be compensated unknown to Tom. But the neighbor didn't show up before Tom decided the day had come to address that issue.
This is considered a project.... projects are not a good thing when it's only Tom and ME...... I avoid these situations at all cost.
But the neighbor didn't know that timing was an issue.... after all we need grass before you need the lawn mower and there is no rain in sight so he probably figured no ran no grass....... AND none of the neighbors see anything wrong with TOM..............
SO the next day after fighting to keep my head attached and all my digits (I need them all for counting) and the day wasted and my laundry room turned into a metal shop.....the neighbor stopped over to see how Tom was doing....
Hadn't seen him around..... AND he is such a nice guy that he told Tom he could find him a deck for his lawn mower and he'd help him get it fixed up and running.
WHEW!
After Terry left Tom said... "I'm going to have to milk this leg thing..... I said "what?"
"People feel bad about my knee .... that's why Terry is helping me" Okay I'm confused and asked "Is that what he said?"........ "Yah ... he seemed really concerned about it."
So last night on the phone .... Tom's bum knee turned into a torn ACL......???
His knee is causing him a lot of pain. When it feels good he uses it in the same way that causes it to hurt..... and so it has been a circle...... I now put a brace on it to REMIND him not to use it......... OR HE WILL NEED SURGERY..... So far that works.
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