My father wrote a book about his experience during the time of my grandmother's, his mother's, fall into anonymity of Alzheimer's. He gave me and others copies, and I thought it was wonderful. I believed it was a shame that he didn't have it made into a book at the time that could have been shared, but the cost was too much. Now with the current online media, I thought it would be great to share it here in this blog.
I took some liberty at naming the chapters, but the content is his. He is a solitary man and felt a little uneasy about putting this out here, but we agreed that if it could help one person, it would be worth it. I put the book on here in reverse order so that you can begin to read the entries and read it as if you were reading his book.
By putting this online and reading it again, I see how much my father has changed since writing this book. Life is change and though I may not agree with everything that he writes about during that time (mostly views on religion) neither does he now.
By reading this, I hope that one person can see that what they are going through or what they have been through, they are not alone. Here is the open, honest feelings of a son who dealt with his feelings and emotions during the spiraling of his mother due to the illness until her death.
I love my father, he's a good man. I say that to anyone who will listen, but you can read it here for yourself.
So here is the story of Francis Stiles Hunter's battle with Alzheimer's as seen through the eyes of her son, David Hunter.
Ecclesiastes Chapter 3
and a time for every purpose under the sun.
A time to be born, a time to die,
atime to plant, and a time to
pluck up that which is planted,
a time to kill, a time to heal,
a time to break down,
a time to build up,
a time to weep, and a time to laugh,
a time to mourn, and a time to dance,
a time to cast away stones,
and a time to gather stones together,
a time to embrace,
and a time to refrrain from embracing,
a time to get, and a time to lose,
a time to keep and a time to cast away,
a time to rend, and a time to sew,
a time to keep silent,
and a time to speak,
a time to love, and a time to hate,
a time for war, and a time for peace.
The Day My Mother Left Must Have Been on Sunday When God was Resting
I remember the coldof the day.
Not the air,
but inside. Deep
like a broken photograph.
That was the cold day my
mother left.
I remember still,
cold,
deep
in my heart cracking like
ice
over a frozen pond.The sea came crashing
down
before
everyone could cross
and she left standing,
alone,waiting
for the cold day to end
was caught up in
it all.
Alzheimer's,
all crying,all sadness,
all sorrow, all memories of yesterday,
and all fear of tomorrow.
Introduction
I have a dog and her name is Autumn. Autumn is a pretty dog and I love her very much. When she comes in the house she sometimes makes a mess. I clean it up because it's not her fault. She spends much of her time on the porch alone. It is fenced in so she won't wander off. I don't like to do this, but if I allow her to go free I would have to watch her all the time. Autumn doesn't like being on the porch, but she has no choice. Her life is in my hands. All her decisions are made by me.
Sometimes she looks at me with those big sad eyes to ask the question, why? Why don't you trust me enough to let me go out on my own? To walk in the yard and feel the sun on my face? Why do you treat me with such disrespect? I answer, "because you are a dog, and I have to take care of you." Autumn looks back at me with those same loving eyes as if to say, "yes, but I'm your dog."
This is not a book about the cause or treatments of Alzheimer's. This is not a book about the research or medications now being used to try and control this illness. This is not a book of condemnation involving the treatment of my mother. What this book is, is about the awful effect Alzheimer's had on my mother and me. A disease that robbed my mother of her dignity while all I could do was watch.
This is the story of a woman that raised three boys, and her descent into an illness that took away her ability to function as a mother, and a normal human being. This is the story of her life and our struggle with this horrible disease.
Sometimes she looks at me with those big sad eyes to ask the question, why? Why don't you trust me enough to let me go out on my own? To walk in the yard and feel the sun on my face? Why do you treat me with such disrespect? I answer, "because you are a dog, and I have to take care of you." Autumn looks back at me with those same loving eyes as if to say, "yes, but I'm your dog."
This is not a book about the cause or treatments of Alzheimer's. This is not a book about the research or medications now being used to try and control this illness. This is not a book of condemnation involving the treatment of my mother. What this book is, is about the awful effect Alzheimer's had on my mother and me. A disease that robbed my mother of her dignity while all I could do was watch.
This is the story of a woman that raised three boys, and her descent into an illness that took away her ability to function as a mother, and a normal human being. This is the story of her life and our struggle with this horrible disease.
Shades
She heard voices,
and saw shades
of pastels.
Her face reflected lines
of memories
before the war.
"Where are the boys?"
"All grown up mom."
"They should be home by now."
and saw shades
of pastels.
Her face reflected lines
of memories
before the war.
"Where are the boys?"
"All grown up mom."
"They should be home by now."
Chapter 1: The Beginning of the End
On an Autumn day my mother began a journey into a world of confusion. I didn't realize then that she would not be taking this journey alone, but that I would also book passage on her voyage into this world of madness and that my life would be changed forever.
Alzheimer's is a dreadful disease. The symptoms are difficult to see at first because forgetfulness becomes more prevalent when we get older. We are all absent minded sometimes. Many times I've gone to get something only to find out when I got there I couldn't remember what I was going to get. This is normal, but what happened to my mom that day wasn't.
My father died in 1981. During his long illness my mother stood by his side. Her courage and strength was an example of her loving and kind spirit. When he died her grief was overwhelming. My father had been the head of the house. My mother had never balanced a checkbook or driven a car. She had been totally dependent on him, and with his passing I would have to become the one that would take his place.
In the years after my father's death, I taught mom how to drive. I showed her how to balance a checkbook. On the days she was sad, I tried to cheer her up, and on the days she was not so sad I tried to teach her to laugh again. I managed the house, mowed the grass, and tried to take care of the things she couldn't.
My mother and me were always very close, that's why I blamed myself for not noticing the signs of Alzheimer's in the beginning. I should have realized something was wrong when she repeated stories over and over during my visits, but I was too busy. Busy with my job and my family. I deluded myself into believing there was nothing wrong. I convinced myself that what was happening was a normal part of growing old.
Bells should have gone off when she told me stories about how the insurance agent was following her around town and trying to have sex with her, or when she was waiting in the doctors examination room and a young boy entered wanting to examine her. I worried about these changes but I still tried to convince myself they were normal. All of my delusions were shattered on that autumn day in 1996.
After I had finished mowing the yard, I was in the kitchen talking to my mother. She told me that someone was trying to steal her car. She heard voices outside the other night and it sounded like the car door being opened. I went to look at her car and couldn't find anything wrong. On my way back to the house, I started asking myself some questions. Why was everything going wrong for my mother? It seemed in the last two months her problems had increased dramatically. She was not only repeating herself more, but she was becoming more confused.
In the years after my father died, my mother had been spending summers with her brother in Kentucky. I'd paid her bills while she was gone. We decided it would be easier if my name was amended to her checking account. It would make it easier for me to pay her bills. I took her checkbook out of the desk. I opened it and looked inside, my heart sank. She had made so many mistakes. I asked her why there were so many mistakes, she casually replied she didn't know much about keeping records, they confused her.
I talked it over with my brother. We came to the decision that maybe she was depressed because it was so close to the anniversary of my dad's death. I decided to keep an eye on the situation in case it got worse. It didn't take long. She became obsessed with the idea she owned another house. I tried to tell her there was no other house but she wouldn't listen. The more I tried to convince her of that fact, the more adament she became. I would drive her to the place she said her other house was located. When we got there she would say she had made a mistake, but after we got home she would start ranting about her other house again.
I got upset with her but there was nothing I could do or say that would change her mind. Much later as the disease got worse, I learned you are not supposed to confront or disagree with an Alzheimer's patient because it confuses them. If I had known this a lot earlier I don't think I would have been so frustrated. I would get upset with her sometime. I thought she was trying to get attention that this was just an act so everyone would feel sorry for her because sometimes she acted perfectly normal.
Finally, late in 1996 I made an appointment with the doctor. I told him all about the trouble she was having, like the belief that she owned another house. I told him about her inability to balance her checkbook. After he examined her, I was told her blood sugar was a little high, but all of the other symptoms were typical for a woman of her age. I tried telling him this was not normal for my mother. She had never acted this way before. He assured me that it was all right, but I didn't believe him. He took our money and we left.
In November of 1996, I noticed a decisive change in her attitude. After all the years of living by herself, she suddenly became afraid of living alone. I was seeing her every day now. I noticed every time my car came in view of her house she would be staring out of the window. Sometimes I would enter the driveway with my lights off, walk up to the front and watch her. She would be walking from room to room like she was looking for someone or something, talking to herself. When she got tired of walking she would sit down in front of the window and stare.
I started getting calls from neighbors. They were concerned about mom's strange behavior. For Christmas one year, my brother had given her a gun. I took it from her house and replaced it with a water pistol. She slept with it under her pillow and never noticed the difference.
Later that month, mom began to see people that were not there. She became afraid of being evicted from her own house. I made another appointment with the doctor. He told me what she was doing was a little odd, but nothing to worry about, maybe a mild depression. In older people that was normal, once again I tried to explain what was happening to my mother was not normal. She was changing drastically in front of my eyes. He assured me the situation was typical for a woman her age, then he took our money and we left.
I know this sounds callous but I will have to say something in the doctor's defense. My mother was becoming a good actor. When someone was around she guarded her actions carefully. So careful that others had difficulty believing there was anything wrong with her. Still, he was a doctor and he should have known something was wrong.
By the end of 1996, mom was becoming very agitated over the smallest incidents. She was always nervous, walking cointinuously and talking about all the other people in her house keeping her awake at night. One afternoon she seemd worse than usual. She kept talking about her other house, and how she couldn't get any sleep at night because of all the loud people wandering around the house. I couldn't calm her down and I couldn't leave her in this condition. I called the hospital emergency room where my brother worked and told him I was bringing her in. When we got there the doctor examined her, prescribed medication to calm her down and admitted her for observation.
The next morning on their advice, I made an appointment with a neurologist. He examined her and sent her for an M.R.I. After he had evaluated all of this information, my brother and I were called in for a consultation. The x-rays had revealed that my mother had experienced a series of small strokes. He assured me that the situation was normal for a woman her age, took our money and we left.
It seemed to me we were getting nowhere fast. I knew something was seriously wrong. I knew what my mother was doing was not normal, and I knew we had to figure out what it was or we would all be in a mental hospital. She had only been acting this way for three months, but it was already difficult to remember what it was like before all of this began.
Alzheimer's is a dreadful disease. The symptoms are difficult to see at first because forgetfulness becomes more prevalent when we get older. We are all absent minded sometimes. Many times I've gone to get something only to find out when I got there I couldn't remember what I was going to get. This is normal, but what happened to my mom that day wasn't.
My father died in 1981. During his long illness my mother stood by his side. Her courage and strength was an example of her loving and kind spirit. When he died her grief was overwhelming. My father had been the head of the house. My mother had never balanced a checkbook or driven a car. She had been totally dependent on him, and with his passing I would have to become the one that would take his place.
In the years after my father's death, I taught mom how to drive. I showed her how to balance a checkbook. On the days she was sad, I tried to cheer her up, and on the days she was not so sad I tried to teach her to laugh again. I managed the house, mowed the grass, and tried to take care of the things she couldn't.
My mother and me were always very close, that's why I blamed myself for not noticing the signs of Alzheimer's in the beginning. I should have realized something was wrong when she repeated stories over and over during my visits, but I was too busy. Busy with my job and my family. I deluded myself into believing there was nothing wrong. I convinced myself that what was happening was a normal part of growing old.
Bells should have gone off when she told me stories about how the insurance agent was following her around town and trying to have sex with her, or when she was waiting in the doctors examination room and a young boy entered wanting to examine her. I worried about these changes but I still tried to convince myself they were normal. All of my delusions were shattered on that autumn day in 1996.
After I had finished mowing the yard, I was in the kitchen talking to my mother. She told me that someone was trying to steal her car. She heard voices outside the other night and it sounded like the car door being opened. I went to look at her car and couldn't find anything wrong. On my way back to the house, I started asking myself some questions. Why was everything going wrong for my mother? It seemed in the last two months her problems had increased dramatically. She was not only repeating herself more, but she was becoming more confused.
In the years after my father died, my mother had been spending summers with her brother in Kentucky. I'd paid her bills while she was gone. We decided it would be easier if my name was amended to her checking account. It would make it easier for me to pay her bills. I took her checkbook out of the desk. I opened it and looked inside, my heart sank. She had made so many mistakes. I asked her why there were so many mistakes, she casually replied she didn't know much about keeping records, they confused her.
I talked it over with my brother. We came to the decision that maybe she was depressed because it was so close to the anniversary of my dad's death. I decided to keep an eye on the situation in case it got worse. It didn't take long. She became obsessed with the idea she owned another house. I tried to tell her there was no other house but she wouldn't listen. The more I tried to convince her of that fact, the more adament she became. I would drive her to the place she said her other house was located. When we got there she would say she had made a mistake, but after we got home she would start ranting about her other house again.
I got upset with her but there was nothing I could do or say that would change her mind. Much later as the disease got worse, I learned you are not supposed to confront or disagree with an Alzheimer's patient because it confuses them. If I had known this a lot earlier I don't think I would have been so frustrated. I would get upset with her sometime. I thought she was trying to get attention that this was just an act so everyone would feel sorry for her because sometimes she acted perfectly normal.
Finally, late in 1996 I made an appointment with the doctor. I told him all about the trouble she was having, like the belief that she owned another house. I told him about her inability to balance her checkbook. After he examined her, I was told her blood sugar was a little high, but all of the other symptoms were typical for a woman of her age. I tried telling him this was not normal for my mother. She had never acted this way before. He assured me that it was all right, but I didn't believe him. He took our money and we left.
In November of 1996, I noticed a decisive change in her attitude. After all the years of living by herself, she suddenly became afraid of living alone. I was seeing her every day now. I noticed every time my car came in view of her house she would be staring out of the window. Sometimes I would enter the driveway with my lights off, walk up to the front and watch her. She would be walking from room to room like she was looking for someone or something, talking to herself. When she got tired of walking she would sit down in front of the window and stare.
I started getting calls from neighbors. They were concerned about mom's strange behavior. For Christmas one year, my brother had given her a gun. I took it from her house and replaced it with a water pistol. She slept with it under her pillow and never noticed the difference.
Later that month, mom began to see people that were not there. She became afraid of being evicted from her own house. I made another appointment with the doctor. He told me what she was doing was a little odd, but nothing to worry about, maybe a mild depression. In older people that was normal, once again I tried to explain what was happening to my mother was not normal. She was changing drastically in front of my eyes. He assured me the situation was typical for a woman her age, then he took our money and we left.
I know this sounds callous but I will have to say something in the doctor's defense. My mother was becoming a good actor. When someone was around she guarded her actions carefully. So careful that others had difficulty believing there was anything wrong with her. Still, he was a doctor and he should have known something was wrong.
By the end of 1996, mom was becoming very agitated over the smallest incidents. She was always nervous, walking cointinuously and talking about all the other people in her house keeping her awake at night. One afternoon she seemd worse than usual. She kept talking about her other house, and how she couldn't get any sleep at night because of all the loud people wandering around the house. I couldn't calm her down and I couldn't leave her in this condition. I called the hospital emergency room where my brother worked and told him I was bringing her in. When we got there the doctor examined her, prescribed medication to calm her down and admitted her for observation.
The next morning on their advice, I made an appointment with a neurologist. He examined her and sent her for an M.R.I. After he had evaluated all of this information, my brother and I were called in for a consultation. The x-rays had revealed that my mother had experienced a series of small strokes. He assured me that the situation was normal for a woman her age, took our money and we left.
It seemed to me we were getting nowhere fast. I knew something was seriously wrong. I knew what my mother was doing was not normal, and I knew we had to figure out what it was or we would all be in a mental hospital. She had only been acting this way for three months, but it was already difficult to remember what it was like before all of this began.
Chapter 2: Mommy
In 1917, my mother was born in a small town in Kentucky. Her ambitions were like most young girls of that era, get married, have children and raise a family. In time she met a man that would be her only love. Even though times got rough only death would separate them. I remember my father most for his abuse of alcohol. I watched as my father would call my mother names and slap her around when he was drunk. When he wasn't drinking he was a good man. Liquor changed him and he paid a high price for it. The memories of alcohol remained with me longer than the memories of happiness. Sometimes in the darkness I still feel the fear and violence, but this is not a book about my father. My mother accepted the way he was. I sometimes wonder why she didn't leave him, but I realize now she put up with with this abuse because of us. Back then she could have never made it on her own.
My mother raised three boys in a world where men were supposed to be men and women were supposed to be women. She helped instill in me a respect and reverence for life that I would use in raising my own children. She always sang. I would sit and listen to her sing as she worked. Mom had a good voice. When she was younger, she had the opportunity to sing professionally, but instead she decided to spend the time with her family. My mother was always laughing. She looked young for her age. When my older brother was in high school, mom was often mistaken for his sisiter. During spring vacation we never had a dull moment in our house. Mom would become one of the boys. I still have the photographs in my mind.
There are the memories of picking blackberries across from the house. Mom always wore a wide brimmed hat, and I would fight the briers. I would get tangled up in them sometimes and mom would have to get me out. There are the memories of canning food. I would eat the raw peas and mom would let me do this even though she knew she would be up most of the night taking care of me with an upset stomach. There are the memories of long nights when the wind would blow, the thunder would roar and we would be tucked away in our beds with mom's soothing voice telling us there was nothing to dread. There are the memories of her picking up the glass and mess after father's drunken rage. There are the memories of my cousins that used to visit us for the summer and the fun they had with mom, but most of all I remember how she used to smile and sing as she worked around the house. Her up beat attitude even when the money was not there, and her ability to make me laugh even when I got older are what I remember.
My mother taught me not to fight that bullies were bullies because they were afraid. She would always say you win when you walk away. She taught me right from wrong, to be respectful of other's feelings and to always find some good in everyone. I remember when I was ten years old and we were visiting my aunt in Kentucky. On our way, we stopped at a store. while mom was shopping I happened to notice a piece of candy lying on the floor. I picked it up and put it in my pocket, even though I knew this was stealing. When we got to my aunt's house I sneaked around back, unwrapped the candy and was about to take a bite when I remembered what my mom had told me. You might feel that you are getting away with something but God is always watching. I started crying and told my mother what I had done that I had stolen the candy. On the way home we stopped by the store. I had to take the candy back and apologize to the owner for stealing it.
This was a lesson I never forgot.
Until my dad died in 1981 my mother had never made any decisions on her own. She had been completely dependent on my father, and when he died it not only broke her heart, but also her spirit. For anyone who has not lost someone close, it would be impossible, but on that day something else died in my mother. Something she would never get back.
As long as I can remember my mother was always healthy. In her 70's she could out walk me. She loved the woods. We would go to the woods and dig genseng roots. After two hours, I was ready to go home, but she would still be going strong. I often wondered where she got all her energy.
My mother had one great fear in her life. She worried she would get the same disease as her mother. My grandmother was admitted to a mental institution in the early 1950's. She had "lost her mind" as they said back then. I would hear my parents talking in whispers, and sometimes when dad was drinking the word "crazy" came up. When my grandmother stayed with us, mom always kept a close eye on her because often she would become violent. Most of my earliest memories of my grandmother was watching as she walked back and forth through the house. Back then the word Alzheimer's wasn't used, but that's what she had.
How was I to know this woman who influenced my life so much when I was young would be dependent on me when she was older. It was unimaginable. Even when she took care of her mother, I was too young to understand why. Sometimes I still wish I had that innocence of not knowing.
My mother raised three boys in a world where men were supposed to be men and women were supposed to be women. She helped instill in me a respect and reverence for life that I would use in raising my own children. She always sang. I would sit and listen to her sing as she worked. Mom had a good voice. When she was younger, she had the opportunity to sing professionally, but instead she decided to spend the time with her family. My mother was always laughing. She looked young for her age. When my older brother was in high school, mom was often mistaken for his sisiter. During spring vacation we never had a dull moment in our house. Mom would become one of the boys. I still have the photographs in my mind.
There are the memories of picking blackberries across from the house. Mom always wore a wide brimmed hat, and I would fight the briers. I would get tangled up in them sometimes and mom would have to get me out. There are the memories of canning food. I would eat the raw peas and mom would let me do this even though she knew she would be up most of the night taking care of me with an upset stomach. There are the memories of long nights when the wind would blow, the thunder would roar and we would be tucked away in our beds with mom's soothing voice telling us there was nothing to dread. There are the memories of her picking up the glass and mess after father's drunken rage. There are the memories of my cousins that used to visit us for the summer and the fun they had with mom, but most of all I remember how she used to smile and sing as she worked around the house. Her up beat attitude even when the money was not there, and her ability to make me laugh even when I got older are what I remember.
My mother taught me not to fight that bullies were bullies because they were afraid. She would always say you win when you walk away. She taught me right from wrong, to be respectful of other's feelings and to always find some good in everyone. I remember when I was ten years old and we were visiting my aunt in Kentucky. On our way, we stopped at a store. while mom was shopping I happened to notice a piece of candy lying on the floor. I picked it up and put it in my pocket, even though I knew this was stealing. When we got to my aunt's house I sneaked around back, unwrapped the candy and was about to take a bite when I remembered what my mom had told me. You might feel that you are getting away with something but God is always watching. I started crying and told my mother what I had done that I had stolen the candy. On the way home we stopped by the store. I had to take the candy back and apologize to the owner for stealing it.
This was a lesson I never forgot.
Until my dad died in 1981 my mother had never made any decisions on her own. She had been completely dependent on my father, and when he died it not only broke her heart, but also her spirit. For anyone who has not lost someone close, it would be impossible, but on that day something else died in my mother. Something she would never get back.
As long as I can remember my mother was always healthy. In her 70's she could out walk me. She loved the woods. We would go to the woods and dig genseng roots. After two hours, I was ready to go home, but she would still be going strong. I often wondered where she got all her energy.
My mother had one great fear in her life. She worried she would get the same disease as her mother. My grandmother was admitted to a mental institution in the early 1950's. She had "lost her mind" as they said back then. I would hear my parents talking in whispers, and sometimes when dad was drinking the word "crazy" came up. When my grandmother stayed with us, mom always kept a close eye on her because often she would become violent. Most of my earliest memories of my grandmother was watching as she walked back and forth through the house. Back then the word Alzheimer's wasn't used, but that's what she had.
How was I to know this woman who influenced my life so much when I was young would be dependent on me when she was older. It was unimaginable. Even when she took care of her mother, I was too young to understand why. Sometimes I still wish I had that innocence of not knowing.
Chapter 3: Walking...Like Mother Like Daughter
It was December of 1996 and my mother was no better. In fact, it seemed like she was getting worse. Day after day her life was becoming more difficult to manage. My brother and me decided that it would no longer be possible for her to live alone any longer. She could not be trusted with even the simplest of jobs. She acted normal some of the time, but her bouts with fantasy were getting worse. It was difficult to find anyone in the family that could look after her because we all had jobs. It would be impossible for her to be alone in our house without us there. My mother-in-law was living on my property under a hardship statute allowed by the health department. We decided to buy a mobile home and put it on my brother's property in the spring.
In January 1997, I became my mother's power of attorney. We had reached the point now where she could not make decisions for herself. I was in complete control of my mother's life. Her well being was my responsibility. Even though my brother was there to help, everything depended on my decisions. This was almost an overwhelming weight to carry. Raising children can be difficult, physically and emotionally, but to be responsible for a parent is, to say the least, humbling.
January was also the month all hell broke loose. After the decision to move her, she got much worse. She developed a fear of being evicted from her house. She became more paranoid telling me her house was filled with strange people all the time. It was almost impossible for her to distinguish between reality and fantasy. I decided the plan to move her had to be done as soon as possible. it was important to get her in a controlled environment.
We bought a mobile home in January. We were ready to move it when the rains started and the ground became soft and made it impossible to move. Another obstacle in our way was negotiationg with the county. There were laws that had to be met before it was moved. I know it sounds like I gave the doctors a rough time for not recognizing my mother's illness sooner, but that was nothing compared to the inefficiency of the government. We applied for a hardship septic tank permit. This would allow my mom's mobile home to use my brother's septic tank. Electricity, water, and gas had to be made available. We applied for permits, filled out the paperwork, and began a struggle with the local bureaucracy. After two months of frustration and threats, we finally had mom settled on my brother's property.
Having her near the family seemed to help for awhile. We also felt more comfortable having her there, but as time passed we noticed her paranoia creeping back in. I received phone calls from my mother during the day. She'd tell me she was her at brother's house in Kentucky and was ready to come home. I would explain to her that she was already home. It took a long time but she would finally agree. Five minutes later the phone would ring again and it would be her asking me to come and get her again. She also started asking me to take her home. Home to her meant where her mother lived, but her mother had been dead for 35 years. It was getting to the point where we were having trouble just keeping her in the house. I knew we needed help, someone who knew what they were doing and not someone who would take our money and send us home feeling like it was our fault for bringing her there in the first place.
My wife's niece told her about a special unit in a nearby hostpital that worked with behavioral problems like mom was having. In August, I made an appointment at the Medical Center. It was a eyar since I had become aware of the first symptoms, but it seemed like a lifetime. The Medical Center admitted my mother and kept her for two weeks for evaluation. It was determined that she was in the first stages of Alzheimer's and they recommended she be admitted to a 24 hour care facility, such as home care. The Medical Center personnel were very professional. They listened to our concerns and fears. I cannot praise them enough. With their help we were able to make the right decisions and feel better about the ones we had made.
I'd read a little about Alzheimer's before my mom was diagnosed with it. I had even joked about it, but I really didn't understand what it was. I knew my uncle had suffered with it a few years earlier. I started to read about this disease, and what I learned made me realize there would be harder times to come. There is no cure for Alzheimer's. The patient slowly deteriorates mentally and physically. They lose their short term memory first and then the long term memory follows. If the person is in good health, the disease can last a long time. My mother was in good health.
Even though the Medical Center recommended a 24 hour care facility, my brother and I decided to try and take care of her ourselves. At least until she became unmanageable. We put a camera in her home that would monitor her movements. We installed door alarms that would sound every time she tried to leave. From that day in August her privacy was a thing of the past. My mother would be monitored 24 hours a day.
In October of 1997, I noticed another symptom appear. My mother became emotionless. This terrible illness was taking her ability to feel. This thief was stealing my mother a little each day. She never cried anymore and she seldom laughed. She used to talk about my father, now she barely spoke his name. She used to sing as she went about her work, now she just sat and stared. In the past, I could never leave her house without a kiss, now she never made the effort.
Another symptom she developed was walking. She would get up all hours of the night, fully dressed and ready to leave, even though she had no idea where she was going. Most of the time, she just wanted to go home to her mother. I kept thinking I would wake and this would all be a dream, but I knew that would never happen. From the literature I read, I knew it was going to get much worse.
I was spending three nights a week at my mothers house. The stress on me was beginning to show. When I was away from her, I felt guilty, and when I was with her I couldn't wait to get away. Emotionally, I was becoming exhausted.
On a typical night I would get to my mother's place at about 5 o'clock in the afternoon. From the time I got there until the time I left, it became a constant barrage of questions. Where is mom? Who lives next door? She would ask these questions over and over again. After going to bed, I would wake up to noises in the living room. I would find mom there, fully dressed and ready to leave. I would ask her where she was going. She thought it was morning, and then she would go back to bed, but an hour later she'd be up again. Finally, I gave up trying to sleep at all.
One night we were watching television, or should I say I was watching television. My mother just stared at the screen. At 9 o'clock she prepared for bed. After she had her night gown on she came over and sat down beside me and said "honey, don't be too long," kissed me on the cheek and went to bed. This seemed odd because she rarely showed emotion anymore. Later when I went to bed, I stopped by her room. I found one side of her bed turned down. I realized she had confused me for my father. A lump caught in my throat when I realized how far on this journey we had come, and how much this disease was in control.
As the weeks went by I became more aware of her physical appearance. She was used to walking a mile every day, but by November, she would tire after walking around the yard. Her shoulders began to slump. Her arms would swing together when she walked. The lines on her face became deeper. Her eating patterns began to change. She couldn't remember when she ate last, so she at all the time, and that made her weight balloon. Her ability to move around her mobile home was also becoming limited.
The nights I was spending with her started getting worse, and I was beginning to dread them. To illustrate how a typical night was at her place, I will print a page from the journal I kept during her sickness. The date was October 1997. "I spent last night with mom. She now has a difficult time keeping her concentration from minute to minute. She is constantly eating. I believe she has gained ten poinds in the last month. While I was asleep, the alarm went off again. It was about 10:30 PM and I was right up to find her fully dressed going out the door. When I asked her where she was going, she acted frightened and said there was someone in the house besides her, and she was going next door to get help. I got her back inside and tried to convince her that the other person was me. She went back to bed, but about an hour later she was up again. She didn't get much sleep, I'm sure I didn't. When I sleep at her place, I keep the door slightly open with a chair propped against it. I am afraid when she wakes up at night, she might confuse me for an intruder, and hurt me while I am asleep. It upsets me to feel this way about my mother. This morning the van arrived to take her to the Medical Center where she goes every Tuesday and Thursday to be with the other Alheimer's patients. This allows the doctors to evaluate her progress or decline. So far there hasn't been much progress. When she got back, we went to yard sales. She got tired, she's been getting tired lately. I don't know if it is because of her weight or the fact that she is getting weaker."
There are many support groups available to help the families of Alzheimer's patients. I decided not to be involved with them. I have always been a private person, and I never have fit in well with groups. For those who need the support of others, I believe it can help very much. Don't wait for the final stages of this disease when it has stolen as much from you as it has your loved one. Even if it's just a friend to talk to. It is not an admission of failure on your part. I had my wife, my friend. She was the best support group I could have. If I needed someone to talk to she was there, and if I needed to be alone, she allowed me my solitude. My wife was with me through it all and it made our love stronger.
Don't try and face this disease alone. You will lose. Always have someone for support. Someone you can lean on when the times get rough and believe me, they will. Most of the time, it's difficult for a man to deal with his emotions. Facing such a depressing disease can rob you of your feelings. It can suck the life out of you. I did not let this happen to me. With help from my wife, I was strong enough to face this disease with courage. I did not conquer it, but I did not let it conquer me.
Until November of 1997, my mother tried to hide her unusual behavior around others. Often we'd tell relatives and friends about her actions, but after talking to her they found it hard to believe us. She put up a good front, but as time passed it became harder for her to keep up the act. When she was around people, she now remained silent. Finally, she regressed inside her mobile home not wanting visitors, or even to go outside. I knew the next decision would be the hardest of my life, and it was.
In January 1997, I became my mother's power of attorney. We had reached the point now where she could not make decisions for herself. I was in complete control of my mother's life. Her well being was my responsibility. Even though my brother was there to help, everything depended on my decisions. This was almost an overwhelming weight to carry. Raising children can be difficult, physically and emotionally, but to be responsible for a parent is, to say the least, humbling.
January was also the month all hell broke loose. After the decision to move her, she got much worse. She developed a fear of being evicted from her house. She became more paranoid telling me her house was filled with strange people all the time. It was almost impossible for her to distinguish between reality and fantasy. I decided the plan to move her had to be done as soon as possible. it was important to get her in a controlled environment.
We bought a mobile home in January. We were ready to move it when the rains started and the ground became soft and made it impossible to move. Another obstacle in our way was negotiationg with the county. There were laws that had to be met before it was moved. I know it sounds like I gave the doctors a rough time for not recognizing my mother's illness sooner, but that was nothing compared to the inefficiency of the government. We applied for a hardship septic tank permit. This would allow my mom's mobile home to use my brother's septic tank. Electricity, water, and gas had to be made available. We applied for permits, filled out the paperwork, and began a struggle with the local bureaucracy. After two months of frustration and threats, we finally had mom settled on my brother's property.
Having her near the family seemed to help for awhile. We also felt more comfortable having her there, but as time passed we noticed her paranoia creeping back in. I received phone calls from my mother during the day. She'd tell me she was her at brother's house in Kentucky and was ready to come home. I would explain to her that she was already home. It took a long time but she would finally agree. Five minutes later the phone would ring again and it would be her asking me to come and get her again. She also started asking me to take her home. Home to her meant where her mother lived, but her mother had been dead for 35 years. It was getting to the point where we were having trouble just keeping her in the house. I knew we needed help, someone who knew what they were doing and not someone who would take our money and send us home feeling like it was our fault for bringing her there in the first place.
My wife's niece told her about a special unit in a nearby hostpital that worked with behavioral problems like mom was having. In August, I made an appointment at the Medical Center. It was a eyar since I had become aware of the first symptoms, but it seemed like a lifetime. The Medical Center admitted my mother and kept her for two weeks for evaluation. It was determined that she was in the first stages of Alzheimer's and they recommended she be admitted to a 24 hour care facility, such as home care. The Medical Center personnel were very professional. They listened to our concerns and fears. I cannot praise them enough. With their help we were able to make the right decisions and feel better about the ones we had made.
I'd read a little about Alzheimer's before my mom was diagnosed with it. I had even joked about it, but I really didn't understand what it was. I knew my uncle had suffered with it a few years earlier. I started to read about this disease, and what I learned made me realize there would be harder times to come. There is no cure for Alzheimer's. The patient slowly deteriorates mentally and physically. They lose their short term memory first and then the long term memory follows. If the person is in good health, the disease can last a long time. My mother was in good health.
Even though the Medical Center recommended a 24 hour care facility, my brother and I decided to try and take care of her ourselves. At least until she became unmanageable. We put a camera in her home that would monitor her movements. We installed door alarms that would sound every time she tried to leave. From that day in August her privacy was a thing of the past. My mother would be monitored 24 hours a day.
In October of 1997, I noticed another symptom appear. My mother became emotionless. This terrible illness was taking her ability to feel. This thief was stealing my mother a little each day. She never cried anymore and she seldom laughed. She used to talk about my father, now she barely spoke his name. She used to sing as she went about her work, now she just sat and stared. In the past, I could never leave her house without a kiss, now she never made the effort.
Another symptom she developed was walking. She would get up all hours of the night, fully dressed and ready to leave, even though she had no idea where she was going. Most of the time, she just wanted to go home to her mother. I kept thinking I would wake and this would all be a dream, but I knew that would never happen. From the literature I read, I knew it was going to get much worse.
I was spending three nights a week at my mothers house. The stress on me was beginning to show. When I was away from her, I felt guilty, and when I was with her I couldn't wait to get away. Emotionally, I was becoming exhausted.
On a typical night I would get to my mother's place at about 5 o'clock in the afternoon. From the time I got there until the time I left, it became a constant barrage of questions. Where is mom? Who lives next door? She would ask these questions over and over again. After going to bed, I would wake up to noises in the living room. I would find mom there, fully dressed and ready to leave. I would ask her where she was going. She thought it was morning, and then she would go back to bed, but an hour later she'd be up again. Finally, I gave up trying to sleep at all.
One night we were watching television, or should I say I was watching television. My mother just stared at the screen. At 9 o'clock she prepared for bed. After she had her night gown on she came over and sat down beside me and said "honey, don't be too long," kissed me on the cheek and went to bed. This seemed odd because she rarely showed emotion anymore. Later when I went to bed, I stopped by her room. I found one side of her bed turned down. I realized she had confused me for my father. A lump caught in my throat when I realized how far on this journey we had come, and how much this disease was in control.
As the weeks went by I became more aware of her physical appearance. She was used to walking a mile every day, but by November, she would tire after walking around the yard. Her shoulders began to slump. Her arms would swing together when she walked. The lines on her face became deeper. Her eating patterns began to change. She couldn't remember when she ate last, so she at all the time, and that made her weight balloon. Her ability to move around her mobile home was also becoming limited.
The nights I was spending with her started getting worse, and I was beginning to dread them. To illustrate how a typical night was at her place, I will print a page from the journal I kept during her sickness. The date was October 1997. "I spent last night with mom. She now has a difficult time keeping her concentration from minute to minute. She is constantly eating. I believe she has gained ten poinds in the last month. While I was asleep, the alarm went off again. It was about 10:30 PM and I was right up to find her fully dressed going out the door. When I asked her where she was going, she acted frightened and said there was someone in the house besides her, and she was going next door to get help. I got her back inside and tried to convince her that the other person was me. She went back to bed, but about an hour later she was up again. She didn't get much sleep, I'm sure I didn't. When I sleep at her place, I keep the door slightly open with a chair propped against it. I am afraid when she wakes up at night, she might confuse me for an intruder, and hurt me while I am asleep. It upsets me to feel this way about my mother. This morning the van arrived to take her to the Medical Center where she goes every Tuesday and Thursday to be with the other Alheimer's patients. This allows the doctors to evaluate her progress or decline. So far there hasn't been much progress. When she got back, we went to yard sales. She got tired, she's been getting tired lately. I don't know if it is because of her weight or the fact that she is getting weaker."
There are many support groups available to help the families of Alzheimer's patients. I decided not to be involved with them. I have always been a private person, and I never have fit in well with groups. For those who need the support of others, I believe it can help very much. Don't wait for the final stages of this disease when it has stolen as much from you as it has your loved one. Even if it's just a friend to talk to. It is not an admission of failure on your part. I had my wife, my friend. She was the best support group I could have. If I needed someone to talk to she was there, and if I needed to be alone, she allowed me my solitude. My wife was with me through it all and it made our love stronger.
Don't try and face this disease alone. You will lose. Always have someone for support. Someone you can lean on when the times get rough and believe me, they will. Most of the time, it's difficult for a man to deal with his emotions. Facing such a depressing disease can rob you of your feelings. It can suck the life out of you. I did not let this happen to me. With help from my wife, I was strong enough to face this disease with courage. I did not conquer it, but I did not let it conquer me.
Until November of 1997, my mother tried to hide her unusual behavior around others. Often we'd tell relatives and friends about her actions, but after talking to her they found it hard to believe us. She put up a good front, but as time passed it became harder for her to keep up the act. When she was around people, she now remained silent. Finally, she regressed inside her mobile home not wanting visitors, or even to go outside. I knew the next decision would be the hardest of my life, and it was.
Live Spelled Backward is Evil (no one knows why)
If I could end your pain
I would.
I would laugh at pain.
I would laugh,
and I would laugh until
it became malleable,
and then I would change
pain to death,
and I would be
the death of pain,
and then I would end this
sickening sarcophagus
of solitude,
and I would cry joyous
tears of laughter,
and watch,
and hope,
and lift your weakness
to my bosom, and when I die,
and if there is a God
I will crawl
as I did as a child,
and I shall pull myself
up high,
and stare into the eyes
of the maker of man, and I shall
ask why,
and if there is no answer
then I will laugh
in the face of evil.
I will laugh,
and evil will tremble
with my rage, and my rage
will be the death of evil.
I would.
I would laugh at pain.
I would laugh,
and I would laugh until
it became malleable,
and then I would change
pain to death,
and I would be
the death of pain,
and then I would end this
sickening sarcophagus
of solitude,
and I would cry joyous
tears of laughter,
and watch,
and hope,
and lift your weakness
to my bosom, and when I die,
and if there is a God
I will crawl
as I did as a child,
and I shall pull myself
up high,
and stare into the eyes
of the maker of man, and I shall
ask why,
and if there is no answer
then I will laugh
in the face of evil.
I will laugh,
and evil will tremble
with my rage, and my rage
will be the death of evil.
Chapter 4: Nursing Home
The cold wind seemd to mimic my pain during the Christmas of 1997. The pain as I slowly watched my mother being consumed by Alzheimer's, the pain of feeling sorry for myself as I faced this disease, the pain of how this illness was affecting my family, and the pain of knowing the time would soon come when I would no longer be able to take care of her. Her mental ability was declining rapidly. Even with alarms and cameras monitoring her we were afraid she would wander off. My brother and I came to the decision to admit her to the Medical Center for evaluation again. We both knew what this meant, but it was a decision that could not be delayed any longer.
Winter is a difficult time for me. It is cold. The colors are gone leaving the scenery black and white. Everything is lifeless and drab. As I watched this disease consume my mother, I wondered if I would ever feel the warmth of summer again.
It was a miserable day when I took my mother to the Medical Center. I had difficulty admitting to myself, but I knew this would be the last time she would ever see her mobile home again. She sat next to me in the truck showing no emotion. This had an impact on my life I will never forget. It broke my heart. Everything she owned was gone. She would no longer sit on her couch, or cook on her stove. She would no longer be able to walk in her yard, and feel the wind of freedom on her face. My mother would spend the rest of her life in a nursing home. This disease had taken so much that she didn't know or care what was happening to her. At that moment I felt that I had failed her.
I was holding back the tears when I took her inside the Medical Center. I kissed her goodbye and left. The rage in me was so great I wanted to explode. I wanted to scream so loud that the world would have to acknowledge my pain. I wanted to beat the truck steering wheel until it was dust, but most of all I wanted to turn the clock back to the way it was before my mother got sick.
The Medical Center evaluated her again. The results were what we expected. This time we had not choice. She would have to be admitted to a nursing home. When I was a baby my mother changed my diapers, stayed with me while I was afraid, and kept me from harm. She protected me until I could protect myself. Now our roles had been reversed. I was in charge. I knew it was up to me to look after her as she became a child again on this final step of our journey.
The Medical Center furnished me with a list of long term care facilities. There are so many steps you can take so you and your loved one can find a nursing home that fills everybody's needs. Check with the local nursing homes and see if there are any complaints. If there were complaints, were they taken care of in a swift and satisfactory manner. Make sure they accept Med-a-Care and Med-a-Caid. Check and see if they have a special section for Alzheimer's patients. If not make sure they have locks or alarm systems on the doors. Talk with some of the residents and see how they are treated. Don't just talk to one. Talk to many so you can get an overall view of the way they are treated.
After your loved one is admitted, check on them often. Don't visit them at the same time every day. Vary your hours. You have the right to visit at any time, even after visiting hours. Notice how friendly the staff is. Most nursing homes are under staffed and just because a person wears a uniform doesn't mean they are qualified as a care giver. Fortunately, incompetence is not found widely in the care of the elderly, but it only takes one time when it is your relative. When you notify someone of a problem, notice how long it takes before it is corrected. If you feel it has taken too long, notify the nursing home administrator.
Don't be critical. The staff has a hard job to do. Complain about situations that count. Don't complain about every little thing. If you are a constant complainer, the staff has a tendency to overlook it when you report major problems. Try and make friends with the care givers that are in direct contact with your loved one, such as nurses aides and house keepers.
While I was caring for mom and I was too busy to worry about guilt, but now she was in a nursing home and I had time to relax and reflect on the past. I started feeling sorry for myself. Except for anger, guilt was the most difficult emotion I experienced.
Guilt is an exhausting weight to carry. You become mired in self pity. You question your decisions, thinking you could have done something different, better, but the truth is you make the decisions that have to be made and live with the consequences. In the following years you will have plenty of time to analyze your actions. Some deserve the guilt, but others live their years in torture only to realize too late the destructive legacy of guilt. My advice is do everything you possibly can now and let the future take care of itself.
I ultimately realized that I had done everything I could for my mother, but after a bad visit to the nursing home, I would leave feeling that I hadn't done as much as I could have because when a person reaches the second stage of Alzheimer's, a good nursing home is the best place for them.
Guilt is bad enough, but anger is worse. What do you do with anger? I know that no one is responsible for my mother's illness, so who do I direct my anger at? My wife? She knows how I feel and gives me the space to work it out. She knows just being there with me is enough. Without her I don't know if I could have made it through this nightmare.
My anger is directed inward. I hold it inside and this confuses me because I don't consider myself to be a complicated person, and I am not used to feeling sorry for myself. Often during mom's sickness, I wondered how it would feel to find a land far off from everyone and become a recluse. Not to worry about appointments and obligations. Not to watch my mother decline each day, but then I wonder who would care? Who would be there to pick up the pieces?
Another fear I have is the future. Will I get this diseas that crippled my mother and my grandmother? My mother always worried she would end up like her mother when she got older. I used to console her by telling her that Alzheimer's is not hereditary. Well, now I know how she felt, and I know heredity does affect Alzheimer's. I am 30 years younger than my mother. Will I worry as she did? I already do.
Winter is a difficult time for me. It is cold. The colors are gone leaving the scenery black and white. Everything is lifeless and drab. As I watched this disease consume my mother, I wondered if I would ever feel the warmth of summer again.
It was a miserable day when I took my mother to the Medical Center. I had difficulty admitting to myself, but I knew this would be the last time she would ever see her mobile home again. She sat next to me in the truck showing no emotion. This had an impact on my life I will never forget. It broke my heart. Everything she owned was gone. She would no longer sit on her couch, or cook on her stove. She would no longer be able to walk in her yard, and feel the wind of freedom on her face. My mother would spend the rest of her life in a nursing home. This disease had taken so much that she didn't know or care what was happening to her. At that moment I felt that I had failed her.
I was holding back the tears when I took her inside the Medical Center. I kissed her goodbye and left. The rage in me was so great I wanted to explode. I wanted to scream so loud that the world would have to acknowledge my pain. I wanted to beat the truck steering wheel until it was dust, but most of all I wanted to turn the clock back to the way it was before my mother got sick.
The Medical Center evaluated her again. The results were what we expected. This time we had not choice. She would have to be admitted to a nursing home. When I was a baby my mother changed my diapers, stayed with me while I was afraid, and kept me from harm. She protected me until I could protect myself. Now our roles had been reversed. I was in charge. I knew it was up to me to look after her as she became a child again on this final step of our journey.
The Medical Center furnished me with a list of long term care facilities. There are so many steps you can take so you and your loved one can find a nursing home that fills everybody's needs. Check with the local nursing homes and see if there are any complaints. If there were complaints, were they taken care of in a swift and satisfactory manner. Make sure they accept Med-a-Care and Med-a-Caid. Check and see if they have a special section for Alzheimer's patients. If not make sure they have locks or alarm systems on the doors. Talk with some of the residents and see how they are treated. Don't just talk to one. Talk to many so you can get an overall view of the way they are treated.
After your loved one is admitted, check on them often. Don't visit them at the same time every day. Vary your hours. You have the right to visit at any time, even after visiting hours. Notice how friendly the staff is. Most nursing homes are under staffed and just because a person wears a uniform doesn't mean they are qualified as a care giver. Fortunately, incompetence is not found widely in the care of the elderly, but it only takes one time when it is your relative. When you notify someone of a problem, notice how long it takes before it is corrected. If you feel it has taken too long, notify the nursing home administrator.
Don't be critical. The staff has a hard job to do. Complain about situations that count. Don't complain about every little thing. If you are a constant complainer, the staff has a tendency to overlook it when you report major problems. Try and make friends with the care givers that are in direct contact with your loved one, such as nurses aides and house keepers.
While I was caring for mom and I was too busy to worry about guilt, but now she was in a nursing home and I had time to relax and reflect on the past. I started feeling sorry for myself. Except for anger, guilt was the most difficult emotion I experienced.
Guilt is an exhausting weight to carry. You become mired in self pity. You question your decisions, thinking you could have done something different, better, but the truth is you make the decisions that have to be made and live with the consequences. In the following years you will have plenty of time to analyze your actions. Some deserve the guilt, but others live their years in torture only to realize too late the destructive legacy of guilt. My advice is do everything you possibly can now and let the future take care of itself.
I ultimately realized that I had done everything I could for my mother, but after a bad visit to the nursing home, I would leave feeling that I hadn't done as much as I could have because when a person reaches the second stage of Alzheimer's, a good nursing home is the best place for them.
Guilt is bad enough, but anger is worse. What do you do with anger? I know that no one is responsible for my mother's illness, so who do I direct my anger at? My wife? She knows how I feel and gives me the space to work it out. She knows just being there with me is enough. Without her I don't know if I could have made it through this nightmare.
My anger is directed inward. I hold it inside and this confuses me because I don't consider myself to be a complicated person, and I am not used to feeling sorry for myself. Often during mom's sickness, I wondered how it would feel to find a land far off from everyone and become a recluse. Not to worry about appointments and obligations. Not to watch my mother decline each day, but then I wonder who would care? Who would be there to pick up the pieces?
Another fear I have is the future. Will I get this diseas that crippled my mother and my grandmother? My mother always worried she would end up like her mother when she got older. I used to console her by telling her that Alzheimer's is not hereditary. Well, now I know how she felt, and I know heredity does affect Alzheimer's. I am 30 years younger than my mother. Will I worry as she did? I already do.
Emoh Gnisrun
The fog filled her head
like clouds gathering on
a clear day,
and her eyes like a frightened rabbit
made to run
stopped the sun
from passing through.
"It was you," she said.
"It was you who put me here."
"Your father will
be home soon."
"I best get supper ready."
like clouds gathering on
a clear day,
and her eyes like a frightened rabbit
made to run
stopped the sun
from passing through.
"It was you," she said.
"It was you who put me here."
"Your father will
be home soon."
"I best get supper ready."
Chapter 5: I Met a Man With No Feet
I believe one of the most important factors of Alzheimer's is to notice the early signs. Not all memory changes in a person's life means they have Alzheimer's. Some memory changes are temporary such as those that happen when a person loses a loved one or when they are under a stressful situation.
If you have a close relationship with a person experiencing this situation you will be able to notice any drastic changes in their personality. You will know what is normal and not normal for them. One of the major signs I over looked when mom was in the first stages of the disease was the symptom of constantly repeating herself. At first it was once or twice during a visit. She repeated things more often as the disease progressed. Paranoia was another symptom I overlooked. When she believed the insurance agent wanted to have sex with her, or when she thought her car was being stolen I should have known something was very wrong because this was a drastic change in her personality.
Sometimes a person in the first stages of Alzheimer's may continually forget things. They forget to turn off the cooking stove before they leave the house, or have trouble with numbers such as adding and subtracting. Problems of memory, especially short term memory are very common in the first stages. Personality changes such as a tendency to withdraw from social interaction or becoming agitated or irritable are signs.
When these symptoms become repetitive, action should be taken immediately. Family doctors can help some, but they are not equipped to test or evaluate a person with Alzheimer's. If you can locate an institution with behavioral specialists that are trained in the field of dementia, they can assist you tremendously.
If it is determined that your loved one is in the first stages of the disease, you should take action immediately. The most important matter is to have them sign a durable power of attorney while they are still competent enough to do so. This is an important document. It gives you complete control over someones life. You will have to make decisions that will be very difficult later in this disease. An attorney can also help with the laws on real estate, money, and valuables. It's best during this disease to have an attorney available.
Stress on the family can be tremendous. Care givers are usually family members. As time passes and the disease gets worse it may become overwhelming for the family. Fear, guilt, depression are just a few of the burdens that put care givers at risk.
If there is a strong family relationship usually everyone can take a little of the repsonsibility off each other, but as the disease progresses usually there is one person in the family who bares most of the burden. The increasing anxiety and pain in seeing a loved one deteriorate in front of them while they sit helpless can be too much for some.
They will also need help for the guilt they will feel later. It is essential that the care giver maintain their mental stability through each stage of this disease. Even though there is no cure for Alzheimer's, the care giver cannot afford to break down. If they can't afford professional help they should be able to talk to a close friend, minister, priest, or someone they can trust. When you can pour your heart out or just hold someone for awhile it helps to relieve the stress. Remember you are not alone on this journey. There are millions all over the world that feel the way you do.
January 1998 passed quickly. I was still seeing my mother every day. She was still being evaluated by the Medical Center on a regular basis. One of the problems was the disease was progressing faster than the medication could control it.
She never seemed to have a good day anymore. Sometimes after a visit, I would fly into a rage, beating my fist against the dashboard of the car. The anger would be so great in me, I felt like I couldn't breathe. Not all of the visits were bad, there was some humor at times.
Visiting mom on one occasion, I noticed she wasn't wearing her glasses. I asked her where they were. She said she had lost them. The nurse told me they couldn't find them and they had looked everywhere. I searched her room and came up with nothing. We knew they had to be in the nursing home somewhere. When I left, the nurse told me they would keep looking. I contacted her optometrist and he told me not to worry about having a new pair made because being without them didn't seem to affect her vision, besides there would be less chance of her getting hurt if she fell.
Two months after her glasses disappeared I was visiting and noticed she was wearing them again. I asked her where she had found them and it brought no profitable results so I went to the nurses station and asked them. The nurse told me this story. At about the same time my mother lost her glasses the woman that shared her room starting having sever headaches. They took her to the neurologist and he ran tests to no avail. They could not understand what was wrong until one of the nurses aides made the comment that the glasses this woman was wearing might not be hers, but my moms. It was determined that she was wearing my mother's glasses. After they removed them her heaches disappeared.
On another visit, I passed the dining room and noticed a party going on. Some children were visiting from a local school. They were entertaining the residents with songs. The older people were delighted. After the children performed, the activity directory asked a frail old woman to come up. She sang "Let me call you sweetheart." After she finished her song the rest of the residents joined her and they all sang. Like the children, they sang with such honesty and purpose. At that moment, I realized the very young and the very old have so much in common. The have no agenda. No lies, only honesty. No one was in a hurry to leave. No one had any urgent business to attend to. They just enjoyed each other. The residents sang one last song and the children applauded. We lose so much when we don't pay attention to the young and the old. One of them is at the beginning of life's journey and the other at the end. We should listen and watch more.
On another visit, I witnessed another example of innocence. I was sitting with my mother and across from us was an old lady talking to herself. Another family was visiting at the time and with them was a boy about four years old. He walked over to the old woman and started talking to her. The woman held his hand and though neither one of them understood what the other was talking about they both seemed to connect. They were reaching out for each other. Two human beings with a common interest, totally honest. There were no inhibitions, only the need to be with each other. So often with the clutter of everyday life we forget what is important, and allow trivial matters to get in our way.
I remember a quotation my mom once told me. It went, "I felt bad because I had no shoes, and then I met a man that had no feet." On an especially dark day visiting mom, I was feeling sorry for myself. I had an experience that made that quotation come true for me. The weather was cold and dreary outside and inside it wasn't much better. I was listening to mom rattle on about nothing in particular when I noticed a man across the room with his wife. She had Alzheimer's, and I could tell by looking at him he was having a bad time. He held her hand, she would pull it away. At other times she would hold on tight to him. When he was ready to leave, the nurse directed his wife's attention away from the door. After he left, his wife ran from door to door with a look of panic on her face. Within a few seconds she was calm again, walking up and down the hall oblivious of the fact he had been there. It was one of the saddest experiences I have ever seen.
After this I had about all I could take. I kissed mom and left the nursing home. Walking through the parking lot, I saw this man sitting in his car, head hung over the steering wheel. He looked up and nodded as I passed. There were tears in his eyes. On the way home, I was listening to the radio. The sad songs seemed sadder. Seeing him crying was like mom's disease had sucked everything out of me. I drove around for awhile, angry with tears in my eyes. The cold turned to rain, and the highway grew long and dark. I finally went home and when I arrived, my wife was waiting at the door. She knew something was wrong. She asked why I had been so long and I broke down. It all came out, the anger, the fear, the hatred. I ran out into the rain screaming into the cold night. Cursing this disease, this thief that had robbed me of my mother. My wife stood beside me on that day and I was so glad to have her. As my tears mixed with the rain on my face, and as I held my wife close a thought came to me. I felt bad because I had no shoes and met a man that had no feet.
It's hard to explain feelings that come to you when you least expect them. You may be washing dishes or driving your car when suddenly the memories come up and you remember how it was when mom was normal. When she held you close and told you the world wasn't as cruel as it seemed. You remember the smell of bacon frying, of plowed earth, and sassafrass roots. You remember the unfailing love of how all your faults were forgiven. These memories seem so far away now.
As the days passed, I received calls from the nursing home. My mom had fall or she had left again. By law, the nursing home has to inform you if anything unusual happens. I noticed every visit how her phsyical and mental abilities were declining. One morning I was leaving for a visit. I asked myself this question: "Why do I visit her so often?" The moment my visit is over she doesn't remember I was there. Why was I putting myself through this pain? Was I doing it so everyone would think I was the good son? Or did I really believe that my going to see her made a difference? She hardly every recognized me anymore. I left for the nursing home. When I arrived mom was walking up and down the hall. I walked up and put my arm around her directing her towards a chair. I asked her the usual questions. Are you sleeping good? Are you eating? Her answers were always yes. Then she would start talking about her mother. I was listening to half of what she was saying when all of the sudden my mother looked at me and said, "David, I'm sorry, I just don't know what's wrong with me." I looked into her eyes and for that instant I knew she was there with me. For that moment my mother had broken through this disease and was with me once again. Before she could get away I reached for her and said, "Mom, I love you." She smiled and said, "I know". Tears filled my eyes as I hugged her. When I let go, she was gone. Her mind was confused again. On my way home I realized why I went to see her so often. It wasn't to impress everyone else because it never really bothered me what other people thought anyway. It was for those precious seconds I had my mom back. I knew that in a little while those moments would be gone, and soon they were.
In 1998, I moved mom to another nursing facility. One with a special Alzheimer's unit. She was transported by the Medical Center and by the time I arrived she was already there. After I signed all the paper work, I took her personal items to her room. All she had now was some clothing and a few family pictures. The glass had to be removed from the picture frames for obvious reasons. All of the doors were locked except one that led into a small court yard. It was a prison.
Unless you have ever been in an Alzheimer's ward, words cannot do it justice. Most residents are wandering around talking to anyone who will listen. Their life has been reduced to its common denominator. Some have lost control of their bodily functions, and though the aids try, it is impossible to keep them all clean.
The world they lived in does not exist anymore. Now my mother was one of them, walking up and down the halls talking incoherently. I realized then any hope of improvement was lost. I knew this would be the last step of our journey. This would be the end. Tomorrow would only bring more hallways and more tears.
If you have a close relationship with a person experiencing this situation you will be able to notice any drastic changes in their personality. You will know what is normal and not normal for them. One of the major signs I over looked when mom was in the first stages of the disease was the symptom of constantly repeating herself. At first it was once or twice during a visit. She repeated things more often as the disease progressed. Paranoia was another symptom I overlooked. When she believed the insurance agent wanted to have sex with her, or when she thought her car was being stolen I should have known something was very wrong because this was a drastic change in her personality.
Sometimes a person in the first stages of Alzheimer's may continually forget things. They forget to turn off the cooking stove before they leave the house, or have trouble with numbers such as adding and subtracting. Problems of memory, especially short term memory are very common in the first stages. Personality changes such as a tendency to withdraw from social interaction or becoming agitated or irritable are signs.
When these symptoms become repetitive, action should be taken immediately. Family doctors can help some, but they are not equipped to test or evaluate a person with Alzheimer's. If you can locate an institution with behavioral specialists that are trained in the field of dementia, they can assist you tremendously.
If it is determined that your loved one is in the first stages of the disease, you should take action immediately. The most important matter is to have them sign a durable power of attorney while they are still competent enough to do so. This is an important document. It gives you complete control over someones life. You will have to make decisions that will be very difficult later in this disease. An attorney can also help with the laws on real estate, money, and valuables. It's best during this disease to have an attorney available.
Stress on the family can be tremendous. Care givers are usually family members. As time passes and the disease gets worse it may become overwhelming for the family. Fear, guilt, depression are just a few of the burdens that put care givers at risk.
If there is a strong family relationship usually everyone can take a little of the repsonsibility off each other, but as the disease progresses usually there is one person in the family who bares most of the burden. The increasing anxiety and pain in seeing a loved one deteriorate in front of them while they sit helpless can be too much for some.
They will also need help for the guilt they will feel later. It is essential that the care giver maintain their mental stability through each stage of this disease. Even though there is no cure for Alzheimer's, the care giver cannot afford to break down. If they can't afford professional help they should be able to talk to a close friend, minister, priest, or someone they can trust. When you can pour your heart out or just hold someone for awhile it helps to relieve the stress. Remember you are not alone on this journey. There are millions all over the world that feel the way you do.
January 1998 passed quickly. I was still seeing my mother every day. She was still being evaluated by the Medical Center on a regular basis. One of the problems was the disease was progressing faster than the medication could control it.
She never seemed to have a good day anymore. Sometimes after a visit, I would fly into a rage, beating my fist against the dashboard of the car. The anger would be so great in me, I felt like I couldn't breathe. Not all of the visits were bad, there was some humor at times.
Visiting mom on one occasion, I noticed she wasn't wearing her glasses. I asked her where they were. She said she had lost them. The nurse told me they couldn't find them and they had looked everywhere. I searched her room and came up with nothing. We knew they had to be in the nursing home somewhere. When I left, the nurse told me they would keep looking. I contacted her optometrist and he told me not to worry about having a new pair made because being without them didn't seem to affect her vision, besides there would be less chance of her getting hurt if she fell.
Two months after her glasses disappeared I was visiting and noticed she was wearing them again. I asked her where she had found them and it brought no profitable results so I went to the nurses station and asked them. The nurse told me this story. At about the same time my mother lost her glasses the woman that shared her room starting having sever headaches. They took her to the neurologist and he ran tests to no avail. They could not understand what was wrong until one of the nurses aides made the comment that the glasses this woman was wearing might not be hers, but my moms. It was determined that she was wearing my mother's glasses. After they removed them her heaches disappeared.
On another visit, I passed the dining room and noticed a party going on. Some children were visiting from a local school. They were entertaining the residents with songs. The older people were delighted. After the children performed, the activity directory asked a frail old woman to come up. She sang "Let me call you sweetheart." After she finished her song the rest of the residents joined her and they all sang. Like the children, they sang with such honesty and purpose. At that moment, I realized the very young and the very old have so much in common. The have no agenda. No lies, only honesty. No one was in a hurry to leave. No one had any urgent business to attend to. They just enjoyed each other. The residents sang one last song and the children applauded. We lose so much when we don't pay attention to the young and the old. One of them is at the beginning of life's journey and the other at the end. We should listen and watch more.
On another visit, I witnessed another example of innocence. I was sitting with my mother and across from us was an old lady talking to herself. Another family was visiting at the time and with them was a boy about four years old. He walked over to the old woman and started talking to her. The woman held his hand and though neither one of them understood what the other was talking about they both seemed to connect. They were reaching out for each other. Two human beings with a common interest, totally honest. There were no inhibitions, only the need to be with each other. So often with the clutter of everyday life we forget what is important, and allow trivial matters to get in our way.
I remember a quotation my mom once told me. It went, "I felt bad because I had no shoes, and then I met a man that had no feet." On an especially dark day visiting mom, I was feeling sorry for myself. I had an experience that made that quotation come true for me. The weather was cold and dreary outside and inside it wasn't much better. I was listening to mom rattle on about nothing in particular when I noticed a man across the room with his wife. She had Alzheimer's, and I could tell by looking at him he was having a bad time. He held her hand, she would pull it away. At other times she would hold on tight to him. When he was ready to leave, the nurse directed his wife's attention away from the door. After he left, his wife ran from door to door with a look of panic on her face. Within a few seconds she was calm again, walking up and down the hall oblivious of the fact he had been there. It was one of the saddest experiences I have ever seen.
After this I had about all I could take. I kissed mom and left the nursing home. Walking through the parking lot, I saw this man sitting in his car, head hung over the steering wheel. He looked up and nodded as I passed. There were tears in his eyes. On the way home, I was listening to the radio. The sad songs seemed sadder. Seeing him crying was like mom's disease had sucked everything out of me. I drove around for awhile, angry with tears in my eyes. The cold turned to rain, and the highway grew long and dark. I finally went home and when I arrived, my wife was waiting at the door. She knew something was wrong. She asked why I had been so long and I broke down. It all came out, the anger, the fear, the hatred. I ran out into the rain screaming into the cold night. Cursing this disease, this thief that had robbed me of my mother. My wife stood beside me on that day and I was so glad to have her. As my tears mixed with the rain on my face, and as I held my wife close a thought came to me. I felt bad because I had no shoes and met a man that had no feet.
It's hard to explain feelings that come to you when you least expect them. You may be washing dishes or driving your car when suddenly the memories come up and you remember how it was when mom was normal. When she held you close and told you the world wasn't as cruel as it seemed. You remember the smell of bacon frying, of plowed earth, and sassafrass roots. You remember the unfailing love of how all your faults were forgiven. These memories seem so far away now.
As the days passed, I received calls from the nursing home. My mom had fall or she had left again. By law, the nursing home has to inform you if anything unusual happens. I noticed every visit how her phsyical and mental abilities were declining. One morning I was leaving for a visit. I asked myself this question: "Why do I visit her so often?" The moment my visit is over she doesn't remember I was there. Why was I putting myself through this pain? Was I doing it so everyone would think I was the good son? Or did I really believe that my going to see her made a difference? She hardly every recognized me anymore. I left for the nursing home. When I arrived mom was walking up and down the hall. I walked up and put my arm around her directing her towards a chair. I asked her the usual questions. Are you sleeping good? Are you eating? Her answers were always yes. Then she would start talking about her mother. I was listening to half of what she was saying when all of the sudden my mother looked at me and said, "David, I'm sorry, I just don't know what's wrong with me." I looked into her eyes and for that instant I knew she was there with me. For that moment my mother had broken through this disease and was with me once again. Before she could get away I reached for her and said, "Mom, I love you." She smiled and said, "I know". Tears filled my eyes as I hugged her. When I let go, she was gone. Her mind was confused again. On my way home I realized why I went to see her so often. It wasn't to impress everyone else because it never really bothered me what other people thought anyway. It was for those precious seconds I had my mom back. I knew that in a little while those moments would be gone, and soon they were.
In 1998, I moved mom to another nursing facility. One with a special Alzheimer's unit. She was transported by the Medical Center and by the time I arrived she was already there. After I signed all the paper work, I took her personal items to her room. All she had now was some clothing and a few family pictures. The glass had to be removed from the picture frames for obvious reasons. All of the doors were locked except one that led into a small court yard. It was a prison.
Unless you have ever been in an Alzheimer's ward, words cannot do it justice. Most residents are wandering around talking to anyone who will listen. Their life has been reduced to its common denominator. Some have lost control of their bodily functions, and though the aids try, it is impossible to keep them all clean.
The world they lived in does not exist anymore. Now my mother was one of them, walking up and down the halls talking incoherently. I realized then any hope of improvement was lost. I knew this would be the last step of our journey. This would be the end. Tomorrow would only bring more hallways and more tears.
Cliches'
And every day she
read her Bible
and waited for
the parting
of the sea
of senility
to clear,
and watched as the
color of life
faded
to black and white.
Inside every
old person
there is a child
and time slips
away
like yesterday's
newspaper
and God never gives
you more
than you can handle,
and in the end you
carry
your own cross.
I am numb to
feel the cold hand
of her touch,
and I am much
concerned
at this intrusion
of absence.
read her Bible
and waited for
the parting
of the sea
of senility
to clear,
and watched as the
color of life
faded
to black and white.
Inside every
old person
there is a child
and time slips
away
like yesterday's
newspaper
and God never gives
you more
than you can handle,
and in the end you
carry
your own cross.
I am numb to
feel the cold hand
of her touch,
and I am much
concerned
at this intrusion
of absence.
Chapter 6: Mom isn't the Only One Who Has Forgotten
When I first noticed my mother's illness in 1996, and after reading the information about Alzheimer's, I knew that times would be rough, but reading about it and experiencing this disease are two different things. I didn't believe at the time it would be as hard as it was. As I said before there are events in your life you never forget and affect you forever. The time I noticed mom's checkbook and the last time I took her from her home.
On a visit to the nursing home that year I experienced the third occasion that would be ingrained in my memory. I was sitting beside my mother and she was having a conversation with another woman. I tried talking to her but she treated me like I was a stranger. When I finally got her attention I asked if anyone had been to see her. She said "no". Then I asked her if David (me) had been up lately. She looked me in the eyes and said, "No, I haven't seen him in a long time." During that visit she never recognized me once. I knew this would finally happen, but reading about it earlier never prepared me for the pain I felt then.
By the turn of the century my mother and me had been struggling with the disease for four long years. Her weight would go up and down as would her attitude. Mentally she was getting a lot worse, and by the year 2000 it seemed like the whole process was speeding up. When I entered the ward, it was hard for me to recognize her. She would speak in broken sentences, and most of the time she never knew me.
She was starting to get stubborn, and sometimes this stubborness would border on violence. At least three times a year she would be evaluated by the medical center. They would increase her medication. There was the usual amount of scrapes and falls to contend with. She never called anyone by name anymore. She became attached to another resident thinking she was her mother. I wondered how long can a person go on this way. I had read that most Alzheimer's patients didn't die from Alzheiemer's, they usually died from natural causes. My mother was healthy when she was diagnosed with Alzheimer's. It seemed to me that her body would out last her mind. She wasn't having trouble with her bodily functions yet, but I knew that wouldn't be far off.
I remember a Christmas party. You had to be careful with the presents you brought. There could be no sharp objects. The label should read, "not for children under 6 years old." The ward was crazy. Relatives tried to appear like nothing was wrong and the residents were running around all over. There was a brief prayer and Santa Claus appeared. They were like children.
I wanted desperately to blame someone. I wanted the burden taken off my shoulders, but it was me who had the responsibility. It was me that had to pick up the pieces, and it was me who had to try and put them back together again.
One night in May 2000, something happened that made my family understand a little about this disease. My daughter was moving out of our house. She was getting her stuff together when she noticed my mom's old sewing basket. I gave it to her when mom went into the nursing home. We were talking about the basket and how mom had crocheted such beautiful bed spreads. My daughter had never opened it. When she did we were all surprised to find a pair of mom's dirty underwear inside.
On December 1, 2000 in all the confusion in my life I was given one of the greatests gifts a father can receive. A grand daughter. She was perfect in every way. All of her fingers and toes were in the right places, I checked. As she grew I began to notice a comparison with mom. My grand daughter at the age of six months was starting to form words. My mom was forgetting hers. My grand daughter was reaching out to her family, wanting to be held and loved. My mother was reaching inward and losing her feelings of compassion. My grand daughter was learning to build with blocks, and my mother was losing the battle with simple objects. My grand daughter was learning. My mother was forgetting. While my grand daughter was adjusting to life outside the womb, my mother was regressing back into it. This, to me, demonstrated the cycle of life, and how little control we have over it. Mom would rarely smile anymore. Sometimes she would remember my face, but never my name. Her weight was over 200 lbs., and she was starting to lose control of her bodily functions.
As I sat and watched my mother try to stack blocks, I wondered how much more of this will I have to endure? Is there a limit to this cruel disease? Is there a way out? It has taken so much from me already. When I can't find my keys, or I misplace something, I wonder; is it beginning? Will I soon be trying to stack blocks? I feel old anymore and I have to force myself to enter the nursing home. When I enter the Alzheimer's ward my legs fee like they weigh a hundred pounds. She hardly knows me now and we mostly just sit. All of her friends have abandoned her. The good times were great, but now that she can't write checks anymore they say, it just hurts me so much to see her that way. It didn't hurt them when they became fat with her kindness. It didn't hurt them when she went to church every time the doors were open and dropped her money in the coffers. I guess preaching about God's love and acting on it is two different things for some people. It's a shame, no hypocrisy, to teach God's love and then like the picture mom loved so much find out it was only her foot prints on the sand after all.
I watched her one day as she pushed on a locked door trying to get out. I wondered what would happen if she were allowed to go free. Is modern technology really doing us a favor by allowing us to live longer? We are more humane to our pets than we are to other human beings. The drugs keep my mother calm, but I can feel the underlying violence. If there were no medication she would be like her mother was. There are many articles written about how we have made great strides in finding a cure for Alzheimer's, but from all I can see all we can do is manage it. It has been over forty years since my grandmother died and the only thing I can see different is the treatment at the nursing homes.
On a visit to the nursing home that year I experienced the third occasion that would be ingrained in my memory. I was sitting beside my mother and she was having a conversation with another woman. I tried talking to her but she treated me like I was a stranger. When I finally got her attention I asked if anyone had been to see her. She said "no". Then I asked her if David (me) had been up lately. She looked me in the eyes and said, "No, I haven't seen him in a long time." During that visit she never recognized me once. I knew this would finally happen, but reading about it earlier never prepared me for the pain I felt then.
By the turn of the century my mother and me had been struggling with the disease for four long years. Her weight would go up and down as would her attitude. Mentally she was getting a lot worse, and by the year 2000 it seemed like the whole process was speeding up. When I entered the ward, it was hard for me to recognize her. She would speak in broken sentences, and most of the time she never knew me.
She was starting to get stubborn, and sometimes this stubborness would border on violence. At least three times a year she would be evaluated by the medical center. They would increase her medication. There was the usual amount of scrapes and falls to contend with. She never called anyone by name anymore. She became attached to another resident thinking she was her mother. I wondered how long can a person go on this way. I had read that most Alzheimer's patients didn't die from Alzheiemer's, they usually died from natural causes. My mother was healthy when she was diagnosed with Alzheimer's. It seemed to me that her body would out last her mind. She wasn't having trouble with her bodily functions yet, but I knew that wouldn't be far off.
I remember a Christmas party. You had to be careful with the presents you brought. There could be no sharp objects. The label should read, "not for children under 6 years old." The ward was crazy. Relatives tried to appear like nothing was wrong and the residents were running around all over. There was a brief prayer and Santa Claus appeared. They were like children.
I wanted desperately to blame someone. I wanted the burden taken off my shoulders, but it was me who had the responsibility. It was me that had to pick up the pieces, and it was me who had to try and put them back together again.
One night in May 2000, something happened that made my family understand a little about this disease. My daughter was moving out of our house. She was getting her stuff together when she noticed my mom's old sewing basket. I gave it to her when mom went into the nursing home. We were talking about the basket and how mom had crocheted such beautiful bed spreads. My daughter had never opened it. When she did we were all surprised to find a pair of mom's dirty underwear inside.
On December 1, 2000 in all the confusion in my life I was given one of the greatests gifts a father can receive. A grand daughter. She was perfect in every way. All of her fingers and toes were in the right places, I checked. As she grew I began to notice a comparison with mom. My grand daughter at the age of six months was starting to form words. My mom was forgetting hers. My grand daughter was reaching out to her family, wanting to be held and loved. My mother was reaching inward and losing her feelings of compassion. My grand daughter was learning to build with blocks, and my mother was losing the battle with simple objects. My grand daughter was learning. My mother was forgetting. While my grand daughter was adjusting to life outside the womb, my mother was regressing back into it. This, to me, demonstrated the cycle of life, and how little control we have over it. Mom would rarely smile anymore. Sometimes she would remember my face, but never my name. Her weight was over 200 lbs., and she was starting to lose control of her bodily functions.
As I sat and watched my mother try to stack blocks, I wondered how much more of this will I have to endure? Is there a limit to this cruel disease? Is there a way out? It has taken so much from me already. When I can't find my keys, or I misplace something, I wonder; is it beginning? Will I soon be trying to stack blocks? I feel old anymore and I have to force myself to enter the nursing home. When I enter the Alzheimer's ward my legs fee like they weigh a hundred pounds. She hardly knows me now and we mostly just sit. All of her friends have abandoned her. The good times were great, but now that she can't write checks anymore they say, it just hurts me so much to see her that way. It didn't hurt them when they became fat with her kindness. It didn't hurt them when she went to church every time the doors were open and dropped her money in the coffers. I guess preaching about God's love and acting on it is two different things for some people. It's a shame, no hypocrisy, to teach God's love and then like the picture mom loved so much find out it was only her foot prints on the sand after all.
I watched her one day as she pushed on a locked door trying to get out. I wondered what would happen if she were allowed to go free. Is modern technology really doing us a favor by allowing us to live longer? We are more humane to our pets than we are to other human beings. The drugs keep my mother calm, but I can feel the underlying violence. If there were no medication she would be like her mother was. There are many articles written about how we have made great strides in finding a cure for Alzheimer's, but from all I can see all we can do is manage it. It has been over forty years since my grandmother died and the only thing I can see different is the treatment at the nursing homes.
When Eleven Minutes Becomes an Hour
She works at the factory
daily. Creating
shoes in her head, and
laboring
eight hours a day even
though
the doors were locked
years before.
My soul is covered with
the carpet
of pain and confusion
she feels, and my
colors are quilted with
the
hours of falling leaves
that brings end to
my hope.
daily. Creating
shoes in her head, and
laboring
eight hours a day even
though
the doors were locked
years before.
My soul is covered with
the carpet
of pain and confusion
she feels, and my
colors are quilted with
the
hours of falling leaves
that brings end to
my hope.
Chapter 7: The Basic Tenants of Buddhism
I don't know if there is a God and I don't really care. If there is a reason for this madness I wish I knew what it was. If there is not a reason I can understand. We are not promised a long, healthy life. Some people have more problems than others. Some make their own problems. I believe we have to understand that we have no control over our lives, or the life of anyone else.
The process of watching this disease destroy my mother has brought me closer to my own mortality, and my own mortality does not seem as important as it was before. I have learned from this experience to use the time I have left wisely. Our whole life is about time. We have to be at work or school. We have appointments. We cannot do away with time. You are only young for an instant and in the blink of an eye you are old. Time is not a gift to be given away lightly. Age is only a medium with which we catalogue someone. For my mom time does not exist anymore. Her childhood and adulthood are the same.
When I was young my mother insisted I go to church every Sunday, like it or not. I had to sit through a sermon about a loving God, but he was only loving if you didn't cross him. Those that were disobedient experienced his wrath. I had a lot of questions but few answers. When I finally got the answers they confused me. My mother always depended on her God and her church for support. When times were rough she would pray, and if her prayers were not answered she would assume it was God's will. Later in my life when I began to form my own views on religion, and they did not agree with hers, she would listen and accept my beliefs even though she disagreed with them.
My mom believed in a kind and loving God. Sometimes she would wonder why bad things happend but she never doubted it was God's will. To her God was the supreme authority. When my father died her faith helped her though the bad times. Before I became aware of her illness we would discuss religion. Even though my beliefs were different than hers she would listen. When she did not have the answers I needed we always respected each others ideas.
When Alzheimer's first became noticeable and she knew something was wrong, she became embarrassed around others. The fear that she would slip and say something that didn't make sense frightened her. At that time she was finding it difficult to keep her thoughts organized. One night before mom was admitted to the nursing home we were sitting on the couch and she asked me this question; "David why is God doing this to me?" I didn't know what to say. How do you answer a question like that? I was saved the answer because a minute later she was confused again and asking to go see her mother.
Why did God allow this to happen to my mother? This question has been asked repeatedly down through the ages. Whether you believe in a God makes no difference. No one allowed my mother to get Alzheimer's just as no one can cure her. Life is not predetermined. You cannot arbitrarily say this person will live or this person will die. We have some control how we live our life, and sometimes the way we live our life affects the time we have here, but no one knows when they will take their last breath, and there is no entity that can predict or affect the outcome. This is a difficult concept for some to grasp, but until you do there will be suffering in your life.
I wrote this book partly because I wanted to show there is not only supportive help outside your family, but also there is strength within. We journey through life believing nothing bad will happen to us. We program ourselves to see a future without disease and death. When we finally have to face the reality of the world we are not prepared.
One of the major influences that sustained me through this ordeal with my mother was my belief in the Buddhist philosophy. Buddhism like Christianity has been perverted through the ages so the actual teachings of the masters are not understood. We have to return to the basics of any philosophy and understand the primary teachings of the person that founded that way of life. I like the initials Christians are wearing on their clothes now, WWJD (What would Jesus do?), but I wonder if any of them understand what it means.
I will try and explain the Buddhist philosophy here in plain English. When a person mentions the name Buddha, all sorts of images come to mind. The worship of a man in the squat position. The occult. Satansim. All of these are not true. The Buddhist philosophy is a way of life and can be practiced with any religion or any other way of life. It is difficult to live this philosophy because it calls for a person to live a good lifestyle. This philosophy more than anything except my wife helped me deal with my mother's disease and answered many of my questions.
I will not bore you with the history of the Buddha. The information on his life can be found in any library, but read it objectively. I will try and explain the Four Noble Truths and the Eight Fold Path to Englightenment. The truth of suffering. The truth of the cause of suffereing. The truth of the cessation of suffering and the path to the cessation of suffering. The Eight Fold Path to the middle way consists of right view, right intentions, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration.
The Four Noble Truths:
1. The truth of suffering. All life is suffering. We are all born in pain and more than likely will die in pain. The body starts out young and vital and ends up old and wrinkled. We lose family to dease and death. We are surrounded by hate and jealousy. We are constantly plagued with the desire for money and power. The world is changing even though we don't want it to. Most of our suffering is inevitable. They will happen because of the laws of nature. There will always be suffering.
2. The truth of the cause of suffering. The foremost causes of suffering is craving and clinging. We cling to the impermanent as if it were real. How often do we fantasize about the objects of our desire? Too often our life is monopolized by the desire for money, romance, power, sex, career, etc. This craving and attachment causes suffering.
3. The truth of the cessation of suffering. There can be an end to suffering. It is simple. You identify the causes of suffering in your life and eliminate them. The causes are usually ignorance and attachments.
4. The truth to the path of the cessation of suffering. The way to end suffering is the Eight Fold Path to the middle way. If practiced prudently it eliminates the suffering through mind and body.
The Eight Fold Path to the Middle Way:
1. Right view. Views and opinions that are free from delusions and self seeking. Seeing life and everything as it really is.
2. Right intentions. We should cultivate high and worthy opinions by freeing ourselves from ignorance, greed, and anger to purify our thoughts.
3. Right speech. We are kind, considerate, and thoughtful. Speak the truth. Do not slander. Words can be weapons or they an be blessings. Make yours blessings.
4. Right action. Treat others as you would have others treat you.
5. Right livelihood. You must avoid killing any living things.
6. Right effort. You must have self-control, and undergo constant training.
7. Right mindfulness. Having the right thoughts and doing what you know is right. Living in the now.
8. Right concentration. Meditation. Resing the mind. Concentration is an instrument to attain wisdom.
This is the basic philosophy of Buddhism. A philosophy that has allowed me to take responsibility for my life and actions.
There was times during my mom's illness that I experienced self pity. Why me? Why do I have to be the one to go through all the suffering? Why should I have to visit her at the nursing home and watch her slip away? When I felt like this I would try and meditate. Meditation is good therapy. It can calm your mind, and allow you to stay in the present. There are many books on the subject, but they are all based on the following premise. The act of meditation is focusing your mind on an object for a time period, eliminating all other thoughts. Staying in the now. It allows you to stay calm. It is difficult to achieve, but the benefits are well worth it.
The process of watching this disease destroy my mother has brought me closer to my own mortality, and my own mortality does not seem as important as it was before. I have learned from this experience to use the time I have left wisely. Our whole life is about time. We have to be at work or school. We have appointments. We cannot do away with time. You are only young for an instant and in the blink of an eye you are old. Time is not a gift to be given away lightly. Age is only a medium with which we catalogue someone. For my mom time does not exist anymore. Her childhood and adulthood are the same.
When I was young my mother insisted I go to church every Sunday, like it or not. I had to sit through a sermon about a loving God, but he was only loving if you didn't cross him. Those that were disobedient experienced his wrath. I had a lot of questions but few answers. When I finally got the answers they confused me. My mother always depended on her God and her church for support. When times were rough she would pray, and if her prayers were not answered she would assume it was God's will. Later in my life when I began to form my own views on religion, and they did not agree with hers, she would listen and accept my beliefs even though she disagreed with them.
My mom believed in a kind and loving God. Sometimes she would wonder why bad things happend but she never doubted it was God's will. To her God was the supreme authority. When my father died her faith helped her though the bad times. Before I became aware of her illness we would discuss religion. Even though my beliefs were different than hers she would listen. When she did not have the answers I needed we always respected each others ideas.
When Alzheimer's first became noticeable and she knew something was wrong, she became embarrassed around others. The fear that she would slip and say something that didn't make sense frightened her. At that time she was finding it difficult to keep her thoughts organized. One night before mom was admitted to the nursing home we were sitting on the couch and she asked me this question; "David why is God doing this to me?" I didn't know what to say. How do you answer a question like that? I was saved the answer because a minute later she was confused again and asking to go see her mother.
Why did God allow this to happen to my mother? This question has been asked repeatedly down through the ages. Whether you believe in a God makes no difference. No one allowed my mother to get Alzheimer's just as no one can cure her. Life is not predetermined. You cannot arbitrarily say this person will live or this person will die. We have some control how we live our life, and sometimes the way we live our life affects the time we have here, but no one knows when they will take their last breath, and there is no entity that can predict or affect the outcome. This is a difficult concept for some to grasp, but until you do there will be suffering in your life.
I wrote this book partly because I wanted to show there is not only supportive help outside your family, but also there is strength within. We journey through life believing nothing bad will happen to us. We program ourselves to see a future without disease and death. When we finally have to face the reality of the world we are not prepared.
One of the major influences that sustained me through this ordeal with my mother was my belief in the Buddhist philosophy. Buddhism like Christianity has been perverted through the ages so the actual teachings of the masters are not understood. We have to return to the basics of any philosophy and understand the primary teachings of the person that founded that way of life. I like the initials Christians are wearing on their clothes now, WWJD (What would Jesus do?), but I wonder if any of them understand what it means.
I will try and explain the Buddhist philosophy here in plain English. When a person mentions the name Buddha, all sorts of images come to mind. The worship of a man in the squat position. The occult. Satansim. All of these are not true. The Buddhist philosophy is a way of life and can be practiced with any religion or any other way of life. It is difficult to live this philosophy because it calls for a person to live a good lifestyle. This philosophy more than anything except my wife helped me deal with my mother's disease and answered many of my questions.
I will not bore you with the history of the Buddha. The information on his life can be found in any library, but read it objectively. I will try and explain the Four Noble Truths and the Eight Fold Path to Englightenment. The truth of suffering. The truth of the cause of suffereing. The truth of the cessation of suffering and the path to the cessation of suffering. The Eight Fold Path to the middle way consists of right view, right intentions, right speech, right action, right livelihood, right effort, right mindfulness, and right concentration.
The Four Noble Truths:
1. The truth of suffering. All life is suffering. We are all born in pain and more than likely will die in pain. The body starts out young and vital and ends up old and wrinkled. We lose family to dease and death. We are surrounded by hate and jealousy. We are constantly plagued with the desire for money and power. The world is changing even though we don't want it to. Most of our suffering is inevitable. They will happen because of the laws of nature. There will always be suffering.
2. The truth of the cause of suffering. The foremost causes of suffering is craving and clinging. We cling to the impermanent as if it were real. How often do we fantasize about the objects of our desire? Too often our life is monopolized by the desire for money, romance, power, sex, career, etc. This craving and attachment causes suffering.
3. The truth of the cessation of suffering. There can be an end to suffering. It is simple. You identify the causes of suffering in your life and eliminate them. The causes are usually ignorance and attachments.
4. The truth to the path of the cessation of suffering. The way to end suffering is the Eight Fold Path to the middle way. If practiced prudently it eliminates the suffering through mind and body.
The Eight Fold Path to the Middle Way:
1. Right view. Views and opinions that are free from delusions and self seeking. Seeing life and everything as it really is.
2. Right intentions. We should cultivate high and worthy opinions by freeing ourselves from ignorance, greed, and anger to purify our thoughts.
3. Right speech. We are kind, considerate, and thoughtful. Speak the truth. Do not slander. Words can be weapons or they an be blessings. Make yours blessings.
4. Right action. Treat others as you would have others treat you.
5. Right livelihood. You must avoid killing any living things.
6. Right effort. You must have self-control, and undergo constant training.
7. Right mindfulness. Having the right thoughts and doing what you know is right. Living in the now.
8. Right concentration. Meditation. Resing the mind. Concentration is an instrument to attain wisdom.
This is the basic philosophy of Buddhism. A philosophy that has allowed me to take responsibility for my life and actions.
There was times during my mom's illness that I experienced self pity. Why me? Why do I have to be the one to go through all the suffering? Why should I have to visit her at the nursing home and watch her slip away? When I felt like this I would try and meditate. Meditation is good therapy. It can calm your mind, and allow you to stay in the present. There are many books on the subject, but they are all based on the following premise. The act of meditation is focusing your mind on an object for a time period, eliminating all other thoughts. Staying in the now. It allows you to stay calm. It is difficult to achieve, but the benefits are well worth it.
The Last Time
she smiled,
I remember, the leaves were
dying
and the shadows
in her corners
made luminous
with her light
the last time.
Epilogue
I had a dog. Her name was Autumn. I loved and protected her because she was my dog. One day I decided to let her run free and experience life beyond the boundaries I made. To explore uncharted territory. While I was gone, the road took her. It's cruel pavement freed her spirit forever and now all that is left are memories.
The call came as they usually do at 12:30 AM. The person from the nursing home told me my mom was experiencing chest pains and having trouble breathing. They were transferring her to the hospital. Thirty minutes later the phone rang again. I knew before I picked it up who it was, and what the message would be. My mother died at 1:00 AM.
Even though my mother didn't recognize me in the final days of her illness, I know she loved me. I am sure when she returns I will know her and she will understand. My journey did not end when hers did. The guilt and fear will follow me until the day I die or until I can't remember it anymore.
The journey with my mother had its peaks and valleys, mostly valleys. It taught me much about my mother and I learned a lot about myself. Her love for me was unconditional. Even though the early years had been bad for her, her attitude and faith remained strong until the end. It reaffirmed my belief that money, career, power, and goals for the future mean absolutely nothing in this game we call life. I have seen that happiness can be found in simple things like the smile of a grandchild, and the love of family. I have learned to take time to live before I have to take time to die.
On a cool autumn day I laid my mother to rest beside my father. Their journey was complete. Everyone told me it was for the best that now she was with my father. Somehow that didn't console me.
I kissed her cheek. It was no longer wrinkled. I was a child again and she was once more the mother I knew before the illness. The horrors of Alzheimer's was gone, and I wept.
The call came as they usually do at 12:30 AM. The person from the nursing home told me my mom was experiencing chest pains and having trouble breathing. They were transferring her to the hospital. Thirty minutes later the phone rang again. I knew before I picked it up who it was, and what the message would be. My mother died at 1:00 AM.
Even though my mother didn't recognize me in the final days of her illness, I know she loved me. I am sure when she returns I will know her and she will understand. My journey did not end when hers did. The guilt and fear will follow me until the day I die or until I can't remember it anymore.
The journey with my mother had its peaks and valleys, mostly valleys. It taught me much about my mother and I learned a lot about myself. Her love for me was unconditional. Even though the early years had been bad for her, her attitude and faith remained strong until the end. It reaffirmed my belief that money, career, power, and goals for the future mean absolutely nothing in this game we call life. I have seen that happiness can be found in simple things like the smile of a grandchild, and the love of family. I have learned to take time to live before I have to take time to die.
On a cool autumn day I laid my mother to rest beside my father. Their journey was complete. Everyone told me it was for the best that now she was with my father. Somehow that didn't console me.
I kissed her cheek. It was no longer wrinkled. I was a child again and she was once more the mother I knew before the illness. The horrors of Alzheimer's was gone, and I wept.
Appendix I: A Letter From My Son
Until I started editing my father's writings, I never fully understood the depth of his pain. You would think it wouldn't be hard for me because I don't think I could handle my own mother deteriorating before my eyes. But, he is such a solitary and strong man that he did not allow me to see his agony. Maybe he did, maybe I did not want to see it.
As a grandchild, I had somewhat of a distance to my grandmother's illness, most...intentional. I wanted to remember her from before, like when she made cookies for us, or Christmas morning. I know that is selfish on my part, and I have guilt for that but I knew that I could do nothing for her.
My mother obviously proved to be a strong woman throughout this ordeal. I can only imagine how it pained her to watch my "solid as a rock" father be impacted by his mother's illness. I hope my wife Kristi will be as strong as mom has been throughout his life. Whether it be not working until my sister and I were in school, being at almost all of our extracurricular activities, or being there for my father in his most painful times, mom has proven her worth as a mother, wife, and a human being.
My father is one of the most loving, caring, intelligent men that I know. He is a success to me in every sense of the word. To read his thoughts helped me know that it is okay to wonder if you are doing good enough. It is okay if I wonder, because my father would do anything for anyone who needed help, and he has doubts. By reading his words, he once again has allowed me to reach a level of knowledge well before I would have without them. He is a great man.
Alzheimer's is a strong competitor in life. It is prevalent in my family as well as Kristi's. I hope that in the coming years as dad's and mom's health starts to decline, as is inevitable, and whether it be Alzheimer's or not that I have the strength, courage, and perseverance to do the right thing as he did and as he will continue to do.
In closing, I want to tell you both, Mom and Dad, I love you. You raised two successful children, you have four amazing grandchildren and more in the future. I know that you have done everything you can to help Jennifer and me, Grandma Hunter, Grandpa Hunter, Grandpa Jones, Grandma Jones, and many, many others. You should never feel guilty for anything because if more people lived their lives as you do, the world would be a much kinder, loving place.
Perry Hunter
As a grandchild, I had somewhat of a distance to my grandmother's illness, most...intentional. I wanted to remember her from before, like when she made cookies for us, or Christmas morning. I know that is selfish on my part, and I have guilt for that but I knew that I could do nothing for her.
My mother obviously proved to be a strong woman throughout this ordeal. I can only imagine how it pained her to watch my "solid as a rock" father be impacted by his mother's illness. I hope my wife Kristi will be as strong as mom has been throughout his life. Whether it be not working until my sister and I were in school, being at almost all of our extracurricular activities, or being there for my father in his most painful times, mom has proven her worth as a mother, wife, and a human being.
My father is one of the most loving, caring, intelligent men that I know. He is a success to me in every sense of the word. To read his thoughts helped me know that it is okay to wonder if you are doing good enough. It is okay if I wonder, because my father would do anything for anyone who needed help, and he has doubts. By reading his words, he once again has allowed me to reach a level of knowledge well before I would have without them. He is a great man.
Alzheimer's is a strong competitor in life. It is prevalent in my family as well as Kristi's. I hope that in the coming years as dad's and mom's health starts to decline, as is inevitable, and whether it be Alzheimer's or not that I have the strength, courage, and perseverance to do the right thing as he did and as he will continue to do.
In closing, I want to tell you both, Mom and Dad, I love you. You raised two successful children, you have four amazing grandchildren and more in the future. I know that you have done everything you can to help Jennifer and me, Grandma Hunter, Grandpa Hunter, Grandpa Jones, Grandma Jones, and many, many others. You should never feel guilty for anything because if more people lived their lives as you do, the world would be a much kinder, loving place.
Perry Hunter
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