Going to check what I wrote a year ago but I do not think that I was figuring on having my worst year yet.
In a way I truly had a lot of help via the VA. Bob is in day care. That should have sufficed to send me singing like a bird and have time to myself.
Somehow, somewhere, I became more and more tired and had less compassion (afraid to say) less patience, less money,
ans was faced with the downhill of the AD disease.
Bob became more violent, a big surprise to me, this was a very gentle man. More distance between him and the family.
I became "she" or the woman and Bobby became more and more hated.
The scenes of anger, frustration became more frequent on all sides. I think he is just as tired of this new mind which does not remember what happened 2 seconds ago.
Imagine for one second if my old and dearest friend would suddenly see a film with him in a rage. How would he feel? He would be devastated. He would be so sorry that he handled us that way, but he does not know.
The cliche , of course, is always "it is not him, it is the disease". Hard for me to put this all together at times.
I also can't understand the word "closure" Guess I need a shrink.
The thyroid is not helping, that plays a big part with being tired and sometimes just exhausted.
I am hoping for a better understanding of it all in 2010.
We are going in the 13th year. I should be used to it by
now/. We never get used to it- is the answer.
Thursday, December 31, 2009
Sunday, December 27, 2009
Saturday, December 26, 2009
catching up
It has been awhile since I blogged.
Reason:
This was and is a blog about my experiences as a 24/7 caregiver to my husband who has Alzheimer.
We are entering the 13th year since his diagnoses.
He is healthy of body and the mind is gone to another land.
This past year was my worst year.
Perhaps because I am worn out.
Perhaps because there I am just too tired all the time to fight it.
Perhaps I have not much left to give.
Perhaps I feel to sorry for myself.
Perhaps it is all becoming too much to my own
memory bank and the concerns that amidst being so immersed in a hundred things to remember that I am concerned about being next.
My respite this year was great, 4 days I was gone.
Daughter Sabrina took in old dad and the other two kids helped too.
There was surprise on all fronts about how much attention is needed.
I was invited to a special birthday for a special friend. She lives in Mass.
Her children paid for my trip and off I flew to
the North.
I was surprised to be among people who do not have to watch someone.
I had time to just sit and ponder, have a glass of wine, cheese and just talk with my best friend.
I could sleep as long as I wanted, did not have to wake up and wonder if the other side of the bed was empty.
I could get used to that.
This year there was violence. Unexpected , totally out of character, but there it was.
Aslap on the face, the ear red and in pain and I could not imagine that this little guy did this to me.
Where was my gentle , ever nice to me, husband.
More medication from the VA and it helps a bit but anything (visitors) can set him off.
A light which he thinks should not be on and
the swinging of the arms start.
I have learned what to look for and how to avoid the blows.
He hit son too. Then again he thinks we are strangers.
So why did I not blog?
I just did not want to bring down the whole world with my sour words , tearful phrases, begging for better days.
Having said that , if you are reading this and you are taking care of someone then you know how I feel and you will know you are not alone in this fight for survival.
I keep telling myself that there is life after A.
I do not want to go first, that would cause chaos in my family.
So I started to diet and try and be healthier the hard part is the mental part.
They, meaning, all involved in this illness keep saying that we have to take care of ourselves first.
If we don't too many of us will become ill.
So I am trying.
We had a nice Christmas eve and he looks good in the photos because the new medication also enhences his appetite. So I already had to purchase new pants as the waist was expanding.
I wish all of you a terrific New Year.
May you have peace in your hearts.
May you dream pleasant dreams.
May you have travel to experience the world around you.
May you be healthier than last year.
May you be prosperous.
May you love the job you are in or find the best one yet.
May all your loved ones be there with you and for you.
My list could go on forever but you got the picture
Happy New Year
Reason:
This was and is a blog about my experiences as a 24/7 caregiver to my husband who has Alzheimer.
We are entering the 13th year since his diagnoses.
He is healthy of body and the mind is gone to another land.
This past year was my worst year.
Perhaps because I am worn out.
Perhaps because there I am just too tired all the time to fight it.
Perhaps I have not much left to give.
Perhaps I feel to sorry for myself.
Perhaps it is all becoming too much to my own
memory bank and the concerns that amidst being so immersed in a hundred things to remember that I am concerned about being next.
My respite this year was great, 4 days I was gone.
Daughter Sabrina took in old dad and the other two kids helped too.
There was surprise on all fronts about how much attention is needed.
I was invited to a special birthday for a special friend. She lives in Mass.
Her children paid for my trip and off I flew to
the North.
I was surprised to be among people who do not have to watch someone.
I had time to just sit and ponder, have a glass of wine, cheese and just talk with my best friend.
I could sleep as long as I wanted, did not have to wake up and wonder if the other side of the bed was empty.
I could get used to that.
This year there was violence. Unexpected , totally out of character, but there it was.
Aslap on the face, the ear red and in pain and I could not imagine that this little guy did this to me.
Where was my gentle , ever nice to me, husband.
More medication from the VA and it helps a bit but anything (visitors) can set him off.
A light which he thinks should not be on and
the swinging of the arms start.
I have learned what to look for and how to avoid the blows.
He hit son too. Then again he thinks we are strangers.
So why did I not blog?
I just did not want to bring down the whole world with my sour words , tearful phrases, begging for better days.
Having said that , if you are reading this and you are taking care of someone then you know how I feel and you will know you are not alone in this fight for survival.
I keep telling myself that there is life after A.
I do not want to go first, that would cause chaos in my family.
So I started to diet and try and be healthier the hard part is the mental part.
They, meaning, all involved in this illness keep saying that we have to take care of ourselves first.
If we don't too many of us will become ill.
So I am trying.
We had a nice Christmas eve and he looks good in the photos because the new medication also enhences his appetite. So I already had to purchase new pants as the waist was expanding.
I wish all of you a terrific New Year.
May you have peace in your hearts.
May you dream pleasant dreams.
May you have travel to experience the world around you.
May you be healthier than last year.
May you be prosperous.
May you love the job you are in or find the best one yet.
May all your loved ones be there with you and for you.
My list could go on forever but you got the picture
Happy New Year
Wednesday, December 9, 2009
Holidays
I am not alone to have the blues around this time of the year.
Yesterday I was looking for something small which old Bob would probably give me for Christmas.
We no longer were giving presents to each other before he became ill but he would make little cards with funny drawings or such. Paper flowers he did often.
Nothing did catch my eye, I just wanted to put something under the tree that would say :OK I am still here.
Truth is hard to swallow, he is n't here.
That reminded me of all the angst I am having to give something to my family and still stay within my budget-read :not overdraw at the bank-
Then again I came across my Christmas story written several years ago and I will repeat it again for my own sake to
remember that the importance of our life is our family around us. When I think that I came here a new bride and now I have 6 grandsons , my kids, and a fabulous son in law.
I am not alone, I have a great bunch of human beings around me who support me night and day. A better Christmas present than that is impossible.
But here was my very best Christmas in 1944:
My best Christmas ever.
Often people ask about your best Christmas memory and this is mine.
Could not ever be duplicated no matter how many Christmases I will live to see.
Christmas Eve 1944
Gent, Belgium
I am 12, mother is 34. She is recovering from a major surgery and a husband who has left her for another woman just a few months ago.
We are finally liberated , we in the north welcomed the allies in September.
In the Southern part, in the gorgeous mountains, hills and forest another battle is in full swing. It becomes to be known as the Battle of the Bulge.
Our gorgeous Ardennes are being mutilated. Worse hundreds of lives if not thousands on all sides of this horrific war are falling in the fresh wet snow.
Mom and I are not aware of this battle, we hear very little of what is going on outside our newly freed Provinces.
We are alone in our very cold house, windows broken covered with lumber,
water rats moved in what used to be our bedrooms.
The roof is shattered in many places from the bombing and air raids.
The wood/coal stove only produces so much heat as we huddle around it
covered in blankets.
Mother is lonely; she is sad, alone for this Christmas for the first time since
her marriages of 16 years. She is still feeling ill. War had not made her
skinny, she is a full fleshed Flemish woman like you see in Rubens renditions.
She lived on potatoes and onion gravy; we are yet to see some meat coming
in our tables but for the grace of the few Americans who are helping us.
So this brave lady who was together with her little family in grave danger all
through the war is now struggling with a new reality. She had been the radio
communicator with the Brits in her bedroom. She was fluent in the language,
thanks to a good education and was my father’s right hand in the underground fight
of what we called “the white brigade”.
She had welcomed the soldiers who parachuted in the night and gave them
clothing and food for the next stop. She had sent her only child to school when
she was wondering if a new air raid would come today, eliminating the factory
and the village. She never knew what the day would bring.
That first Christmas eve when all around us was changed and yet nothing
had changed at all. We were still seeing planes come and go over our heads and
we still saw the air battles, we did not know for sure how far the Germans were and would
they return? In our hearts however we felt that all was going to be fine.
We had hope for the first time in what seemed eternity.
With this in mind Mother decided we should spent Christmas Eve at her sister’s house in town. That was 9 km away (almost 6 miles).
The excitement got a hold of both of us and with enormous energy and good cheer we left the old stove to warm up the rats and started our journey along the
cold waters of the Canal of Terneuzen.
We had walked this foot path for years, I think we knew where there would be a dip in the dirt and mud under the fresh snow, we knew where a large stone would stick out and how to avoid falling in that narrow strip next to the canal.
Next to it was the bicycle path but that worse in need of filling the larger holes.
Even in the dark night we knew our way.
I can still see the cold fog over the water, piercing cold in our bones.
My shoes too tight. I was always growing too fast and my feet were the
first to show the signs.
We started to sing , she could sing , I could barely keep a tune.
But we sang with our vocal chords in full orchestra mode and in the silence
we go from “the Yankees are coming” to “Belle nuit de Noel” and “Petit Papa Noel “.
Along the canal there was only industry, we lived in a lonely little house about 100 yards from an electrical plant. Most plants at this point where not working, almost all had been bombed. The silence along the water was eerie, as the little bit of snow would fall intermittently. Now and then an army truck would drive by on the road and soldiers would yell “Merry Christmas”, some had other messages too.
First time we both heard F word, mother honestly had never heard that one at the
convent where she had studied. She was very puzzled, what did it all mean?
Very few Belgians had cars at that point, perhaps a few doctors.
Only army was on the road, day in and day out.
We were used to that but these camouflaged tanks were a much loved sight.
By the time we reached the blown up bridge of Meulestede we crossed the canal on a makeshift bridge and started to walk between the streets lined with houses.
Here and there one could see lights and the cozy interior of people celebrating.
Mother stopped and told me to look and listen with my heart at the sights and sounds.
“You know Jeannot , she whispered, this is what is called “freedom”.
You see we are finally allowed on the street at night, we are finally allowed to have lights coming out from the houses, that means this is our first Christmas
in many years of total freedom. “
“Freedom means we can now just walk to Tante while watching the stars and
singing, we can peak in the windows and see people with bright lights shining on their faces. Jeannot, never forget this moment”.
I did n’t, I can still see it, I can still smell it, I can feel it in my heart.
Mother was disappointed that we could not get to a midnight mass on our way
but all the churches were still closed. Perhaps no one had wanted to come out
or perhaps the new army had told them to cool it for awhile, I do not know but we passed several churches and no service.
I started to slow down and she found a way of making me go a little faster.
Where she saw light in the houses she rang the doorbell and started to run away.
I had no choice but to run after her and hide around the next corner.
That way we got to my Tante in a jiffy.
I can see the gate at my Tantes house and lights turning on for the
night visitors. No phone to tell them we were coming but the welcome
was heartwarming.
My cousins came out of bed to hug us and I could crawl in bed next to them
tell them about my adventure of the night. No rats here, no damage to their house, they were blessed. I was in heaven close to giggling bodies and it is Christmas.
I do not remember one present given that Christmas, I doubt that we had any
at all but I am still feeling the joy of that night.
The songs come back to me. Belle Nuit.....Petit enfant Jesus.....
Au clair de la lune mon ami Pierot. ................................
Merry Christmas Mom, Tante, wherever you are.
Goeden nacht, zalige nacht.
Yesterday I was looking for something small which old Bob would probably give me for Christmas.
We no longer were giving presents to each other before he became ill but he would make little cards with funny drawings or such. Paper flowers he did often.
Nothing did catch my eye, I just wanted to put something under the tree that would say :OK I am still here.
Truth is hard to swallow, he is n't here.
That reminded me of all the angst I am having to give something to my family and still stay within my budget-read :not overdraw at the bank-
Then again I came across my Christmas story written several years ago and I will repeat it again for my own sake to
remember that the importance of our life is our family around us. When I think that I came here a new bride and now I have 6 grandsons , my kids, and a fabulous son in law.
I am not alone, I have a great bunch of human beings around me who support me night and day. A better Christmas present than that is impossible.
But here was my very best Christmas in 1944:
My best Christmas ever.
Often people ask about your best Christmas memory and this is mine.
Could not ever be duplicated no matter how many Christmases I will live to see.
Christmas Eve 1944
Gent, Belgium
I am 12, mother is 34. She is recovering from a major surgery and a husband who has left her for another woman just a few months ago.
We are finally liberated , we in the north welcomed the allies in September.
In the Southern part, in the gorgeous mountains, hills and forest another battle is in full swing. It becomes to be known as the Battle of the Bulge.
Our gorgeous Ardennes are being mutilated. Worse hundreds of lives if not thousands on all sides of this horrific war are falling in the fresh wet snow.
Mom and I are not aware of this battle, we hear very little of what is going on outside our newly freed Provinces.
We are alone in our very cold house, windows broken covered with lumber,
water rats moved in what used to be our bedrooms.
The roof is shattered in many places from the bombing and air raids.
The wood/coal stove only produces so much heat as we huddle around it
covered in blankets.
Mother is lonely; she is sad, alone for this Christmas for the first time since
her marriages of 16 years. She is still feeling ill. War had not made her
skinny, she is a full fleshed Flemish woman like you see in Rubens renditions.
She lived on potatoes and onion gravy; we are yet to see some meat coming
in our tables but for the grace of the few Americans who are helping us.
So this brave lady who was together with her little family in grave danger all
through the war is now struggling with a new reality. She had been the radio
communicator with the Brits in her bedroom. She was fluent in the language,
thanks to a good education and was my father’s right hand in the underground fight
of what we called “the white brigade”.
She had welcomed the soldiers who parachuted in the night and gave them
clothing and food for the next stop. She had sent her only child to school when
she was wondering if a new air raid would come today, eliminating the factory
and the village. She never knew what the day would bring.
That first Christmas eve when all around us was changed and yet nothing
had changed at all. We were still seeing planes come and go over our heads and
we still saw the air battles, we did not know for sure how far the Germans were and would
they return? In our hearts however we felt that all was going to be fine.
We had hope for the first time in what seemed eternity.
With this in mind Mother decided we should spent Christmas Eve at her sister’s house in town. That was 9 km away (almost 6 miles).
The excitement got a hold of both of us and with enormous energy and good cheer we left the old stove to warm up the rats and started our journey along the
cold waters of the Canal of Terneuzen.
We had walked this foot path for years, I think we knew where there would be a dip in the dirt and mud under the fresh snow, we knew where a large stone would stick out and how to avoid falling in that narrow strip next to the canal.
Next to it was the bicycle path but that worse in need of filling the larger holes.
Even in the dark night we knew our way.
I can still see the cold fog over the water, piercing cold in our bones.
My shoes too tight. I was always growing too fast and my feet were the
first to show the signs.
We started to sing , she could sing , I could barely keep a tune.
But we sang with our vocal chords in full orchestra mode and in the silence
we go from “the Yankees are coming” to “Belle nuit de Noel” and “Petit Papa Noel “.
Along the canal there was only industry, we lived in a lonely little house about 100 yards from an electrical plant. Most plants at this point where not working, almost all had been bombed. The silence along the water was eerie, as the little bit of snow would fall intermittently. Now and then an army truck would drive by on the road and soldiers would yell “Merry Christmas”, some had other messages too.
First time we both heard F word, mother honestly had never heard that one at the
convent where she had studied. She was very puzzled, what did it all mean?
Very few Belgians had cars at that point, perhaps a few doctors.
Only army was on the road, day in and day out.
We were used to that but these camouflaged tanks were a much loved sight.
By the time we reached the blown up bridge of Meulestede we crossed the canal on a makeshift bridge and started to walk between the streets lined with houses.
Here and there one could see lights and the cozy interior of people celebrating.
Mother stopped and told me to look and listen with my heart at the sights and sounds.
“You know Jeannot , she whispered, this is what is called “freedom”.
You see we are finally allowed on the street at night, we are finally allowed to have lights coming out from the houses, that means this is our first Christmas
in many years of total freedom. “
“Freedom means we can now just walk to Tante while watching the stars and
singing, we can peak in the windows and see people with bright lights shining on their faces. Jeannot, never forget this moment”.
I did n’t, I can still see it, I can still smell it, I can feel it in my heart.
Mother was disappointed that we could not get to a midnight mass on our way
but all the churches were still closed. Perhaps no one had wanted to come out
or perhaps the new army had told them to cool it for awhile, I do not know but we passed several churches and no service.
I started to slow down and she found a way of making me go a little faster.
Where she saw light in the houses she rang the doorbell and started to run away.
I had no choice but to run after her and hide around the next corner.
That way we got to my Tante in a jiffy.
I can see the gate at my Tantes house and lights turning on for the
night visitors. No phone to tell them we were coming but the welcome
was heartwarming.
My cousins came out of bed to hug us and I could crawl in bed next to them
tell them about my adventure of the night. No rats here, no damage to their house, they were blessed. I was in heaven close to giggling bodies and it is Christmas.
I do not remember one present given that Christmas, I doubt that we had any
at all but I am still feeling the joy of that night.
The songs come back to me. Belle Nuit.....Petit enfant Jesus.....
Au clair de la lune mon ami Pierot. ................................
Merry Christmas Mom, Tante, wherever you are.
Goeden nacht, zalige nacht.
Thursday, November 19, 2009
November 19 is this spring?
It is balmy outside, feels like spring.
One wonders why the leaves are still falling.
There should be new ones up there.
Enjoy while we can, we all know it is coming.
at least this too will help with heating bills.
Walking the dogs was a real pleasure, I did not
feel like coming inside.
Of course I still have oodles to do before the work
begins on the house.
I am looking forward for next week's outing.
Rhonda has invited me to the employee Christmas party
inside the "house" with a dinner for all and presents for
children.
The "house" of course is Biltmore House in Asheville.
The grand old dame is decked with thousands of lights, Christmas trees and decorations.
Two of our own creations are on display there.
Commissioned in the 1980's by the staff, we made old Father Christmas figures with Victorian toys and fabrics.
I have been there in the summer for employee parties but they are outside. This time inside will be a great treat.
They do not skimp on the food either.
Biltmore is a great attraction in the Christmas season, it is worth to come and see it if you are close by.
So it will be a fun week.
Yesterday Bob was all confused when he came home from the day care. He wanted to go back on the bus. Did not know the house nor us at all. A few hours later he turned violent put his fist out to his son but Bobby was faster and could stop it mid air.
The whole night he was awake, this had not happened before
so he got up and out, up and out, dressed and undressed and went roaming about the house. Son was up till 4 and watching him. Every time I opened my eyes he was there next to me and staring at me.
I am thinking the new meds took different turn.
Of course they are on trial.
we shall see what this evening brings.
One wonders why the leaves are still falling.
There should be new ones up there.
Enjoy while we can, we all know it is coming.
at least this too will help with heating bills.
Walking the dogs was a real pleasure, I did not
feel like coming inside.
Of course I still have oodles to do before the work
begins on the house.
I am looking forward for next week's outing.
Rhonda has invited me to the employee Christmas party
inside the "house" with a dinner for all and presents for
children.
The "house" of course is Biltmore House in Asheville.
The grand old dame is decked with thousands of lights, Christmas trees and decorations.
Two of our own creations are on display there.
Commissioned in the 1980's by the staff, we made old Father Christmas figures with Victorian toys and fabrics.
I have been there in the summer for employee parties but they are outside. This time inside will be a great treat.
They do not skimp on the food either.
Biltmore is a great attraction in the Christmas season, it is worth to come and see it if you are close by.
So it will be a fun week.
Yesterday Bob was all confused when he came home from the day care. He wanted to go back on the bus. Did not know the house nor us at all. A few hours later he turned violent put his fist out to his son but Bobby was faster and could stop it mid air.
The whole night he was awake, this had not happened before
so he got up and out, up and out, dressed and undressed and went roaming about the house. Son was up till 4 and watching him. Every time I opened my eyes he was there next to me and staring at me.
I am thinking the new meds took different turn.
Of course they are on trial.
we shall see what this evening brings.
Monday, November 16, 2009
about being blessed
People use the word "blessed" in many circumstances.
It is used too often or when I feel it is not truly appropriate.
Lately I have been getting emails or statements on FB telling me how blessed I am. Blessed that I still have my husband.
Blessed? Really?
Obviously these are well meaning people with a smidgen of and often too much religious fervor. If I was still a member of the Catholic church I would not feel blessed but perhaps welcome the idea that I am suffering-hence there will be a reward-somewhere sometime, suffering is good.....Mother Theresa loved it. OK, I am no longer there . I have fallen from graces or just grew up, I can't remember.
In any case , lets take this apart.
Where is the blessing?
I am truly searching here.
Would you think it to be a blessing if you, your husband, your wife, your mother, your father, your kids, would receive the news from the man in a white coat. The news that you have an incurable disease. Wow,.that would hit anyone between the eyes. But the good man tells you, you may have this for the next 20 years before you die. Aha! Maybe there is the blessing, twenty years , we can handle that.
Not so fast, what if the person would know from in the beginning (most are too advanced by the time of diagnosis to understand) that he/she will be stripped of all control, stripped of their thoughts, stripped of their memories, stripped of all the tomorrows- no matter how long you will live.
What if you understood that you will spit and slobber while you eat? Would you still be thinking of that nice restaurant you once love? What is you knew that slowly the body functions are no longer registering in your mind, you need someone to clean you like when you were a baby, you need diapers.
How would the sick one think that was a blessing?
What if you could understand that the mild , loving person you always have been turns into a violent person, one who hits, scratches, screams. Would that ill person like to become that?
What would anyone think that they never want to be bathed, that water becomes the enemy and you fight with all your might not to be cleaned. Would that be a Blessing? -I think not-.
From experience we know that in that state of mind you accuse every soul around you as being a thief, everyone steals from you. Surely this paranoia can't be a blessing for you.
The stories continue , too many to mention, the years hang on. Near the end you forget how to swallow and slowly forget how to breathe. Would anyone in their right mind tell that person that he/she is blessed?
Then comes the blessings sent to me , the caregiver,because I am so lucky to still have a husband.
Ouch! I still have a husband? Think again. The man who walks here in this house does not know his wife, his children, his grandchildren, not even the dogs.
Often I am told to leave the bed, he does not sleep with strangers. Lately the hitting has started until we needed
stronger medicine, now he is just zombie like with a manic laugh. Everything now is a matter of laughing or yelling, no in between.
I was surprised when my water bill had doubled, why? I asked. It is not from all the showers he is taking, no dear caregiver it is from the daily changes of the soaking sheets towels and mattress covers. That is a pile of laundry every morning. The water company is blessed, the laundry lady is not very happy remaking and remaking a Queen size bed.
No, I would not call it blessed.
I could write a book about it all and not once would I have to admit that this was all a blessing. I do not give a hoot where you find that the word would fit, it does not fit for me nor for my husband who is now a walking stranger in his house.
It is used too often or when I feel it is not truly appropriate.
Lately I have been getting emails or statements on FB telling me how blessed I am. Blessed that I still have my husband.
Blessed? Really?
Obviously these are well meaning people with a smidgen of and often too much religious fervor. If I was still a member of the Catholic church I would not feel blessed but perhaps welcome the idea that I am suffering-hence there will be a reward-somewhere sometime, suffering is good.....Mother Theresa loved it. OK, I am no longer there . I have fallen from graces or just grew up, I can't remember.
In any case , lets take this apart.
Where is the blessing?
I am truly searching here.
Would you think it to be a blessing if you, your husband, your wife, your mother, your father, your kids, would receive the news from the man in a white coat. The news that you have an incurable disease. Wow,.that would hit anyone between the eyes. But the good man tells you, you may have this for the next 20 years before you die. Aha! Maybe there is the blessing, twenty years , we can handle that.
Not so fast, what if the person would know from in the beginning (most are too advanced by the time of diagnosis to understand) that he/she will be stripped of all control, stripped of their thoughts, stripped of their memories, stripped of all the tomorrows- no matter how long you will live.
What if you understood that you will spit and slobber while you eat? Would you still be thinking of that nice restaurant you once love? What is you knew that slowly the body functions are no longer registering in your mind, you need someone to clean you like when you were a baby, you need diapers.
How would the sick one think that was a blessing?
What if you could understand that the mild , loving person you always have been turns into a violent person, one who hits, scratches, screams. Would that ill person like to become that?
What would anyone think that they never want to be bathed, that water becomes the enemy and you fight with all your might not to be cleaned. Would that be a Blessing? -I think not-.
From experience we know that in that state of mind you accuse every soul around you as being a thief, everyone steals from you. Surely this paranoia can't be a blessing for you.
The stories continue , too many to mention, the years hang on. Near the end you forget how to swallow and slowly forget how to breathe. Would anyone in their right mind tell that person that he/she is blessed?
Then comes the blessings sent to me , the caregiver,because I am so lucky to still have a husband.
Ouch! I still have a husband? Think again. The man who walks here in this house does not know his wife, his children, his grandchildren, not even the dogs.
Often I am told to leave the bed, he does not sleep with strangers. Lately the hitting has started until we needed
stronger medicine, now he is just zombie like with a manic laugh. Everything now is a matter of laughing or yelling, no in between.
I was surprised when my water bill had doubled, why? I asked. It is not from all the showers he is taking, no dear caregiver it is from the daily changes of the soaking sheets towels and mattress covers. That is a pile of laundry every morning. The water company is blessed, the laundry lady is not very happy remaking and remaking a Queen size bed.
No, I would not call it blessed.
I could write a book about it all and not once would I have to admit that this was all a blessing. I do not give a hoot where you find that the word would fit, it does not fit for me nor for my husband who is now a walking stranger in his house.
Sunday, November 15, 2009
Sunday night Nov 15
Two hard days, complicated with the fact that I will have construction going on everywhere in and out of the house
in 2 weeks and probably will for the whole month of Dec.
When Sabrina came to blow the leaves together that already made old Bob upset, he has been re-arranging the piles now for 2 days.
I started to put out old junk for the garbage and he hauled it all back in before I saw him do it.
Week ends are always very hard, I do not have the comfoert of free hours in day care.
Thanksgiving week he will be home 4 days.
Ouch.
I am hoping for a good week to come.
in 2 weeks and probably will for the whole month of Dec.
When Sabrina came to blow the leaves together that already made old Bob upset, he has been re-arranging the piles now for 2 days.
I started to put out old junk for the garbage and he hauled it all back in before I saw him do it.
Week ends are always very hard, I do not have the comfoert of free hours in day care.
Thanksgiving week he will be home 4 days.
Ouch.
I am hoping for a good week to come.
Thursday, November 12, 2009
Someone in Florida lost it....
In the news this week:
A caregiver supposedly killed his father who was afflicted with Alzheimer. Allegedly threw him in the ocean because "he stunk". The man had been a caregiver for some 8 years or more. The father refused bathing (we all know about that one).
My heart goes out to that man.
I read right now he is on house arrest till his trial comes up.
I do think we have to truly start thinking about incidents like these. He is not the first and will not be the last.
I know I came close to just flipping out in several occasions, I had the fortitude to know it was coming and talked to my support group who either came over or talked me into some
state of sanity.
It happens folks, I do not care how much you love the person you care for, there are moments when you tell yourself that you can't do one more chore, one more minute with someone following you, one more item to worry about.
Often after years you have drained your resources on medicine and help, you no longer are the same person.
The sick one is but a body floating about. You lose him/her, you no longer have conversations which make sense.
You no longer can leave the house without someone to take your place. If you are lucky and can afford day care then it is a reprieve for some hours. You try then to think of what "normal" was and try to catch some of this before he/she comes home again.
Vacations are out. Nice restaurants with him/her can be
somewhat an embarrassing situation, the table manners are gone. Trips for your charge to the bathroom can be a challenge , especially if there are 2 doors.
They get lost even in small places, you better be there.
There are so many daily activities which change with every down hill the illness takes away.
It isw never going to get better.
You might think that today Margaret knew you, you love to know that to be true. You see a glimmer in his eyes and you tell yourself "He knows me!". You are still finding hope no matter what you truly know deep inside.
I am told that the research money for Alzheimer is a minimal amount when you compare it to Cancer yet every so many seconds, I think I read 7, someone in this country is being told that they have Alzheimer.
Baby boomers are growing older and guess what? If you have money to invest built day cares and long term care places, we are surely going to need them.
Baby boomers would also be wise to buy a reliable long term care insurance. I could not get it 12 years ago because my husband had prostate cancer so they refused him.
Who has 4 to 7000 a month to pay for this service when you are no longer able. ?
Back to the poor fellow who it is said killed his father, I am so feeling for him. I am so hoping that he does not go to jail.
I am sorry but some bargaining must be able to come to the table. I doubt very seriously that he was in a sane frame of mind.
A caregiver supposedly killed his father who was afflicted with Alzheimer. Allegedly threw him in the ocean because "he stunk". The man had been a caregiver for some 8 years or more. The father refused bathing (we all know about that one).
My heart goes out to that man.
I read right now he is on house arrest till his trial comes up.
I do think we have to truly start thinking about incidents like these. He is not the first and will not be the last.
I know I came close to just flipping out in several occasions, I had the fortitude to know it was coming and talked to my support group who either came over or talked me into some
state of sanity.
It happens folks, I do not care how much you love the person you care for, there are moments when you tell yourself that you can't do one more chore, one more minute with someone following you, one more item to worry about.
Often after years you have drained your resources on medicine and help, you no longer are the same person.
The sick one is but a body floating about. You lose him/her, you no longer have conversations which make sense.
You no longer can leave the house without someone to take your place. If you are lucky and can afford day care then it is a reprieve for some hours. You try then to think of what "normal" was and try to catch some of this before he/she comes home again.
Vacations are out. Nice restaurants with him/her can be
somewhat an embarrassing situation, the table manners are gone. Trips for your charge to the bathroom can be a challenge , especially if there are 2 doors.
They get lost even in small places, you better be there.
There are so many daily activities which change with every down hill the illness takes away.
It isw never going to get better.
You might think that today Margaret knew you, you love to know that to be true. You see a glimmer in his eyes and you tell yourself "He knows me!". You are still finding hope no matter what you truly know deep inside.
I am told that the research money for Alzheimer is a minimal amount when you compare it to Cancer yet every so many seconds, I think I read 7, someone in this country is being told that they have Alzheimer.
Baby boomers are growing older and guess what? If you have money to invest built day cares and long term care places, we are surely going to need them.
Baby boomers would also be wise to buy a reliable long term care insurance. I could not get it 12 years ago because my husband had prostate cancer so they refused him.
Who has 4 to 7000 a month to pay for this service when you are no longer able. ?
Back to the poor fellow who it is said killed his father, I am so feeling for him. I am so hoping that he does not go to jail.
I am sorry but some bargaining must be able to come to the table. I doubt very seriously that he was in a sane frame of mind.
paintings
These souvenirs I found at my friends house in Mass.
My husband is the artist.
He leaves us so many nice memories with the works he did.
trip photos
I am just now getting to some photos from my trip up north.
Friend Lee is 80!!!!She looks 60!!!
Monday, November 9, 2009
true doctor story
Went to the VA hospital.
3 hours before his number was taken care off.
The VA gets you with :"your last four" that is YOU.
An elderly gent came into our waiting room and my patience already at zero - I am thinking: another one before us?
Turns out that he faces Bob and said:Hello I am Dr.......
Say what?
My head is spinning. This is the doctor, he is my husband's age. He does sort of fall against the door jam, dizzy? drunk? what is the problem? I am not very confident on following him with my husband and translator -I have bad ears- daughter.
We tell Mr. Dr. with a lot of experience -maybe_? That our best friend here is often in a hitting mode, especially when bathing is required. We need calming medicine.
The chart come up on the computer screen.
Yup the right number, right last fours.
List of medicine he is taking.
Ask me what they are for, I confuse one with the other so I am honestly telling him that I do not remember which is which.
He gets out of his pocket a mini book with alphabetical listed medicine. Oh! There it is that one is for his B P.
Ok having checked all of the meds.
He tells me via Sabrina that he is prescribing halo------
it should calm him down. Used all the time for Alz.
So we walk out glad to be in the fall fresh air amids falling leaves. Bob does not have a clue why he was there and what this was all about. He tells every one that he is from Santa Cruz.
Well, he did balk, he did not want his temp taken. The nurse could not take his BP. BUT when Dr. M. said we needed some blood work ....then we panicked.
Mr.Bob walked into the lab station and said he was from Santa Cruz, the pretty girl said she was from Monterey and he did not even balk one second when they had to try 2 stabs at finding the right vein. He was Mr Charm.
I sat outside,I was so exhausted and did not want to see him being mean to the nurses. Maybe it helped that I was not there. Sabrina said he was an angel for the needles but then
taking his B P got him angry, go figure.
Once home I ran to the computer to check the meds.
OK I read it was invented in 1957 by t Belgian, that rang well, I thought with some pride.
The last sentence made me sleepless for the next night.
The FDA does NOT approve of this medicine fr A patients.
Hello!!!!!!
Furthermore the article said there have been deaths in this group.
Gave him one pill as prescribed and watched every 10 minutes to see if he was alive.
He turned out to be a sweetheart in the next 2 days.
I even washed him and cut his hair. Not A PEEP out of him. ! Oh how I liked that. No fist fight no water fight.
Sabrina called a pharmacist and asked about the pills.
Unless there is a problem with his heart or asthma there is no problem at all, said the man on the phone.
Prescribed all over the globe for Alzheimer.
Good old drug!
OK so we can hope for some rest in the getting feisty dept.
3 hours before his number was taken care off.
The VA gets you with :"your last four" that is YOU.
An elderly gent came into our waiting room and my patience already at zero - I am thinking: another one before us?
Turns out that he faces Bob and said:Hello I am Dr.......
Say what?
My head is spinning. This is the doctor, he is my husband's age. He does sort of fall against the door jam, dizzy? drunk? what is the problem? I am not very confident on following him with my husband and translator -I have bad ears- daughter.
We tell Mr. Dr. with a lot of experience -maybe_? That our best friend here is often in a hitting mode, especially when bathing is required. We need calming medicine.
The chart come up on the computer screen.
Yup the right number, right last fours.
List of medicine he is taking.
Ask me what they are for, I confuse one with the other so I am honestly telling him that I do not remember which is which.
He gets out of his pocket a mini book with alphabetical listed medicine. Oh! There it is that one is for his B P.
Ok having checked all of the meds.
He tells me via Sabrina that he is prescribing halo------
it should calm him down. Used all the time for Alz.
So we walk out glad to be in the fall fresh air amids falling leaves. Bob does not have a clue why he was there and what this was all about. He tells every one that he is from Santa Cruz.
Well, he did balk, he did not want his temp taken. The nurse could not take his BP. BUT when Dr. M. said we needed some blood work ....then we panicked.
Mr.Bob walked into the lab station and said he was from Santa Cruz, the pretty girl said she was from Monterey and he did not even balk one second when they had to try 2 stabs at finding the right vein. He was Mr Charm.
I sat outside,I was so exhausted and did not want to see him being mean to the nurses. Maybe it helped that I was not there. Sabrina said he was an angel for the needles but then
taking his B P got him angry, go figure.
Once home I ran to the computer to check the meds.
OK I read it was invented in 1957 by t Belgian, that rang well, I thought with some pride.
The last sentence made me sleepless for the next night.
The FDA does NOT approve of this medicine fr A patients.
Hello!!!!!!
Furthermore the article said there have been deaths in this group.
Gave him one pill as prescribed and watched every 10 minutes to see if he was alive.
He turned out to be a sweetheart in the next 2 days.
I even washed him and cut his hair. Not A PEEP out of him. ! Oh how I liked that. No fist fight no water fight.
Sabrina called a pharmacist and asked about the pills.
Unless there is a problem with his heart or asthma there is no problem at all, said the man on the phone.
Prescribed all over the globe for Alzheimer.
Good old drug!
OK so we can hope for some rest in the getting feisty dept.
What d o you know for sure
Ellen de G. said in Oprah mag.:
It's our challenges and obstacles that give us layers of depth and make us interesting. Are they fun when they happen? No. But they are what make us unique. And that's what I know for sure…I think.
That gave me some thought this morning and I wondered what I know for sure.....here is what I came up with:
I know for sure that there is nothing anymore that I know for sure. Absolutely nothing.
Ten years ago I would have given you a long list now the
"for sure" are "maybe's" or " whatever".
It's our challenges and obstacles that give us layers of depth and make us interesting. Are they fun when they happen? No. But they are what make us unique. And that's what I know for sure…I think.
That gave me some thought this morning and I wondered what I know for sure.....here is what I came up with:
I know for sure that there is nothing anymore that I know for sure. Absolutely nothing.
Ten years ago I would have given you a long list now the
"for sure" are "maybe's" or " whatever".
Thursday, November 5, 2009
Caregivers week
this email I sent my kids and grandkids for Caregivers week:
This week is caregivers week.
I want to say thank you to all of you, my children, my grandkids, my in laws.
Everyone of you has been a caregiver in one way or the other for dad.
The little ones had to learn how to deal with this new person, had their feelings hurt at times,
did not get the hugs like before. The adults had to say the long goodbye and be there to
keep mom on her toes and in good frame of mind (if that is possible).
The many trips to the grocery stores, doctors, vets, hair dressers, luncheons, castles, gardens,
would not have been possible at all without you guys.
It is all in the package of caregiving, you guys always try to make it wrapped up in velvet ribbons.
I thank you, every single one of you for this journey is a hard one for us and the unity
of this family is among the best I have seen when I compare my peers.
This week is caregivers week.
I want to say thank you to all of you, my children, my grandkids, my in laws.
Everyone of you has been a caregiver in one way or the other for dad.
The little ones had to learn how to deal with this new person, had their feelings hurt at times,
did not get the hugs like before. The adults had to say the long goodbye and be there to
keep mom on her toes and in good frame of mind (if that is possible).
The many trips to the grocery stores, doctors, vets, hair dressers, luncheons, castles, gardens,
would not have been possible at all without you guys.
It is all in the package of caregiving, you guys always try to make it wrapped up in velvet ribbons.
I thank you, every single one of you for this journey is a hard one for us and the unity
of this family is among the best I have seen when I compare my peers.
Wednesday, November 4, 2009
good news and bad news
The good news is actually GREAT , end of this month and all of December renovations will start on my old house.
New roof and new heating system (with a/c wow) for beginners. The furnace is totally ancient and the pipes replaced last week are completely filled with ancient rust, do not know how the water gets through them at all.
So out with the old boiler and in new electric pump with a/c.
Hoping to get old Bob out of the house as soon as the workmen come is another job to tackle. He can't handle visitors. Not with grace anyway.
Bad news is temporary but I must be out of patience, I have some canker sores visiting my mouth and I am miserable.
A fat lip to boot and no I do not resemble Angelina even with that new look.
I have hardly been able to eat so weight watchers will be proud of me. But that is not the way to diet that I enjoy at all.
I can't believe that I am acting like a baby, these damn things make me very uncomfortable.
So train my thoughts to the coming renovations and help that this old house needs.
New roof and new heating system (with a/c wow) for beginners. The furnace is totally ancient and the pipes replaced last week are completely filled with ancient rust, do not know how the water gets through them at all.
So out with the old boiler and in new electric pump with a/c.
Hoping to get old Bob out of the house as soon as the workmen come is another job to tackle. He can't handle visitors. Not with grace anyway.
Bad news is temporary but I must be out of patience, I have some canker sores visiting my mouth and I am miserable.
A fat lip to boot and no I do not resemble Angelina even with that new look.
I have hardly been able to eat so weight watchers will be proud of me. But that is not the way to diet that I enjoy at all.
I can't believe that I am acting like a baby, these damn things make me very uncomfortable.
So train my thoughts to the coming renovations and help that this old house needs.
Friday, October 30, 2009
MINI VACATION
I was afraid to write in this blog as my BFF reads it.
I was invited to celebrate her 80th birthday in the Berkshires in Mass. It was to be a surprise. Our two daughters made all the arrangements and when that was done THEN they told me that I HAD to go.
If I had been asked I would have said "impossible" but daughter Sabrina arranged it all with Sabra my BFF's daughter. So here I was finding myself in cars and in airplanes and in the North.
Old Dad was with Sabrina for the long week end.
We surprised my friend in a restaurant.
She was shocked and near tears when she saw me.
She did not know that a brunch was going to be offered the next day at her son's mini mansion in the mountains.
The whole family was to be there, all kids and grandkids.
So that too turned out to be a big surprise for her as it was
still 1 week before the actual birthday date.
I was enchanted by it all. I was relaxed. Most of all I slept without waking up to check on things. I slept like a rock.
A glass of wine probably helped.
Everything was fun and food. My favorites.
Lucky I only gained one pound. So back to W W it is.
I figured out that during this visit there was another life.
People meet, people eat together, people laugh.
People have to repeat for my hard of hearing or hearing loss but they did not seem to mind.
My kids sometimes roll their eyes when they have to repeat something for the third time. I remember doing that to my mother who probably gave me this inheritance. But what the hay. I am still walking and cooking and doing whatever I can to keep it all together.
Outside this house , outside this village, outside this state, outside just plain outside with other people there is life, there will be life after Alzheimer if Bob goes first.
If I go first then what? Hey I am not coming back to tell you about it. No doubt relief from worries. Relief in either scenario. Relief.
How did the old Bob behave, the talks about it are somewhat sketchy. No one wants to say that he was difficult, no one wants to admit to much of anything. Whatever.
I slept, I talked till all hours in the night with a friend I had known for 53 years. Perhaps we will never make it again to visit together but this was just grand.
The New England villages have not changed since I travelled there 40 years ago. They are quaint, no high rises, no Mc D's, no Walmarts , lots of antique stores and lots of charming houses. Many of them kept by New Yorkers who like to visit the Berkshires on the week end.
You got to love it. You got to admire the city counsel who keep things the way they were and do not try to make it more profitable with more commerce. Farms are still farms, not builders filled bank accounts. Wish we would do this in our town but the apple orchards are filling up with houses and what a shame that is.
Loved my outing. The first in many years that I left my husband to someone else to take care off. Wow!
He did not seem any worse off. Did not know I was gone, I am sure.
Must try that again, perhaps in the spring.
I was invited to celebrate her 80th birthday in the Berkshires in Mass. It was to be a surprise. Our two daughters made all the arrangements and when that was done THEN they told me that I HAD to go.
If I had been asked I would have said "impossible" but daughter Sabrina arranged it all with Sabra my BFF's daughter. So here I was finding myself in cars and in airplanes and in the North.
Old Dad was with Sabrina for the long week end.
We surprised my friend in a restaurant.
She was shocked and near tears when she saw me.
She did not know that a brunch was going to be offered the next day at her son's mini mansion in the mountains.
The whole family was to be there, all kids and grandkids.
So that too turned out to be a big surprise for her as it was
still 1 week before the actual birthday date.
I was enchanted by it all. I was relaxed. Most of all I slept without waking up to check on things. I slept like a rock.
A glass of wine probably helped.
Everything was fun and food. My favorites.
Lucky I only gained one pound. So back to W W it is.
I figured out that during this visit there was another life.
People meet, people eat together, people laugh.
People have to repeat for my hard of hearing or hearing loss but they did not seem to mind.
My kids sometimes roll their eyes when they have to repeat something for the third time. I remember doing that to my mother who probably gave me this inheritance. But what the hay. I am still walking and cooking and doing whatever I can to keep it all together.
Outside this house , outside this village, outside this state, outside just plain outside with other people there is life, there will be life after Alzheimer if Bob goes first.
If I go first then what? Hey I am not coming back to tell you about it. No doubt relief from worries. Relief in either scenario. Relief.
How did the old Bob behave, the talks about it are somewhat sketchy. No one wants to say that he was difficult, no one wants to admit to much of anything. Whatever.
I slept, I talked till all hours in the night with a friend I had known for 53 years. Perhaps we will never make it again to visit together but this was just grand.
The New England villages have not changed since I travelled there 40 years ago. They are quaint, no high rises, no Mc D's, no Walmarts , lots of antique stores and lots of charming houses. Many of them kept by New Yorkers who like to visit the Berkshires on the week end.
You got to love it. You got to admire the city counsel who keep things the way they were and do not try to make it more profitable with more commerce. Farms are still farms, not builders filled bank accounts. Wish we would do this in our town but the apple orchards are filling up with houses and what a shame that is.
Loved my outing. The first in many years that I left my husband to someone else to take care off. Wow!
He did not seem any worse off. Did not know I was gone, I am sure.
Must try that again, perhaps in the spring.
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