When Your Parent Becomes Your Child: A Personal Love Story (Part 1)
My father was sitting on the sofa in his condo when I suddenly saw a look of fright
fill his face. His eyes opened wide, and his face contorted. He started screaming,
raising his arms to cover his face, and kicking his legs out in front of him. “HELP!
HELP! GET AWAY!”
I sat there in shock, not knowing what was happening or what to do. Prior to this,
we were having a conversation and all was okay, except he thought I was his
mother, as if it were a day in his childhood.
I yelled back, “What’s happening?” He said monsters were coming through the walls.
I never saw someone so frightened. His body was in a fetal position, and he was
crying as if he were a child living out his worst nightmare. I jumped up without
thinking and grabbed the chair I was sitting on and began swinging it around. I tried
to force these invisible monsters out of his home, but to no avail.
I ran over to my father, grabbed his shaking body, and held him tightly in my arms. I
began talking to him as if I were his mother; mixing the words I somehow
remembered hearing in Yiddish and Hebrew when I was a boy. “Sha (Be quiet), Izzy.
Hineini (I’m here).”
“Make them go away, Mama,” my father pleaded like a child.
And that was what my father had become.
I was now the parent.
My father grew up in Brooklyn, New York, a Depression-era child, scared of the
world. My grandparents, immigrants from Rumania, spoke Yiddish, a combination of
German and English, and other Eastern European languages. My grandmother
passed away when I was a teenager, and I was now in my forties, but to my father I
was his mother at that moment. Where the words came from I don’t now, but after a
lifetime of listening to my parents speak Yiddish at the dinner table so my brothers
and I wouldn’t know what they were saying, and taking German for a few years in
high school to find out what they were saying, I had picked up a few words and
phrases.
I rocked my father in my arms and screamed at these intruders, “GENUG! (ENOUGH!)
GAI KOCKEN AHFEN YAM!” (GET OUT OF HERE!) until his crying subsided, which told
me the monsters were retreating. “Izzy,” I said. He opened his eyes and looked at
me. “Gornisht! (Nothing!) Farshtaist? (You understand?)” My father stopped shaking,
stopped crying, only now I was shaking and crying. No one wants anyone to suffer
such horrific fear.
But, my father had Alzheimer’s disease.
Suffering and torment was only the beginning of the nightmare.
While my father was still living, the stress it put on my mother was debilitating. She
did her best with him until her nerves got the best of her. I sent her to Houston for
two weeks to stay with my brother. I moved out of my own house, with the blessing
of my wife and children, and into my parents’ condo. As a writer, I was fortunate
enough to work my own schedule, so I spent all day with my father cooking meals
that his mother used to cook when he was a boy, hoping to make him feel more
secure. I purchased his favorite foods and treats, and I took walks around his condo
development, talking to him about the past and trying to bring the present into the
conversation. I never mentioned his disease to him. I find too many people talk to
Alzheimer’s victims as if they’re not there, and/or they try to correct the mistakes
they make. They are going to forget a few minutes later; however, those few
minutes of confusion fills them with terrible trepidation and guilt. The two weeks I
spent with my father, I was either his mother, or sister, and I played the role. I never
allowed him to feel uncomfortable or confused or angry with himself. You can’t
reverse the effects of Alzheimer’s disease, so the best a caregiver can do is to ‘go
with the flow’ and bask in the victim’s moments of happy reflection, or segue into
something that will make the victim’s mind switch gears from the torment of not
remembering.
Alzheimer’s disease comes in four stages. The first stage can go unnoticed for five
to ten years. The second stage is when the person knows he or she has the disease
and is angry at themself because they can’t remember what they are saying. The
third stage is when the afflicted no longer knows he or she has Alzheimer’s and it
no longer bothers them. This is the calm before the storm, the time some greater
force gives us to strengthen our resolve to withstand the onslaught of the end.
Alzheimer’s disease, depending on the person’s care and genetics can last from a
few years to 10-15 years in length, and sometimes longer.
My father finally got to the point where we couldn’t take care of him anymore. He
couldn’t dress himself, he didn’t want to eat, he couldn’t bathe, and he couldn’t
control his bodily functions. We had a family meeting. Because of the effect it was
having on my mother, my brothers and I decided it was time to place him in a home
where he would get better care. However, no one can take care of an Alzheimer’s
patient better than their loved ones in a familiar familial setting. Friends, aides,
church/synagogue members, and support groups will help out if you ask for that
help (that’s what your local Alzheimer’s chapter is for). It is not the time to be
proud.
We told my father he was going into the hospital (not a home, which scared him)
because he wasn’t eating and we needed to build up his strength so he could come
home. We told him that every time he said he wanted to leave with us. (Sometimes
you have to hide the truth to assuage their fears.) It was a sickly feeling walking
away from him that first time, leaving him in the company of strangers, some who
were so far gone that it was like an insane asylum for children. As I left, I turned and
looked at him sitting in a wheelchair, scared. I felt like I was abandoning him. He
looked as if he was being abandoned.
I never felt so guilty in my life.
My father got worse very quickly. He would walk into other peoples’ rooms and get
in their bed, thinking it was his room. He would sit in the cafeteria staring at his
food, not knowing what to do with it, until he wilted down from 180 pounds to 105.
He smiled whenever he saw us, but I don’t think he knew who we were. However, we
continued to visit him regularly, hoping he might have a second of remembrance
and happiness.
My father and I had a special relationship. I became what he always wanted to be. I
was in show business. At the opening night performance of my Broadway musical,
CANTERBURY TALES, I remember watching him stare at my name above the title, the
pride so evident on his face. When the show ended, I watched him stand with the
audience, applauding, tears streaming down his face. He thought I could do
anything. My father, although a brilliant artist all his life like his own father was, was
foremost a teacher in my eyes. He taught me to reach for the stars, to dream, and to
not give up; to be who I am, to be proud and confident, to seek solace with my
conscience, to revere wisdom and beauty, to hope and help others. I never
remember him voicing a negative comment, nor speaking a harsh word, nor
espousing a prejudicial epithet toward, or about, anyone or anything. There was a
preponderance of love in him, a love that was visible and shared with all he came
into contact.
Family was all-important, all encompassing to my father. He loved my mother
unconditionally, and his children and grandchildren passionately. He wasn’t a
religious man, nor was he a pious man. To him, humanity was his persuasion. To
live life with dignity, with compassion toward (wo)man and nature, and respect for
yourself, made my father a reverent man, a humanitarian, in our eyes.
Finally, after four years, my father’s kidneys failed and he was rushed to the
hospital. The family was called, and as we had a DNR (Do Not Resuscitate) order, we
went to the hospital to stay with him until he passed on. I remember my brothers
and sister-in law, and my wife and children, kiss him goodbye in the emergency
room. He was slipping into a coma, and it was heart-wrenching watching him leave
us. I was the last one to say goodbye. I took his hand, kissed his cheek, and
whispered in his ear how much I love him. I then said, “I just got my first novel
published.” To my shock, and happiness, he squeezed my hand slightly to let me
know he was proud of me.
It was the last memory my father took with him.
And it was beautiful for both of us.
When Your Parent Becomes Your Child: A Personal Love Story (Part 2)
I consider myself a reliable source in care giving, one who understands the decline
of the body and mind from month to month. I, unfortunately, lost both of my
parents to Alzheimer’s disease. As the main caregiver for them, a part of my heart
and soul was forever taken from me; a part I will never be able to reclaim. However,
it developed a resolve in me, a spirit I never knew I had. Although it took an hour of
driving round trip to be with each of my parents, the thought never crossed my
mind. It felt good to make them happy; to make them feel secure that I would
always be there to protect them. My entire family reacted the same way. Like we
were taught in our youth: “Be a mensch!” (a really good person).
Financially, my parents’ small fortune was wiped out (the average cost in care is
$170,000 per patient). But, the worst of it was my teenaged children had to watch
each grandparent whither away and forget who they were. With it (doubly) in their
genes, they worry it will happen to me – and to them.
My father died at 74 years young. Four years later, the same killer attacked my
mother. Was God punishing my family? Had we not lead a life of which He was
proud? There are no answers, and people must remember that. It is no one’s fault.
However, we can stop it. But, more research is needed, and research costs money.
According to Frank LaFerla, PhD, and colleagues at the University of California,
Irvine, they demonstrated in the lab (with mice) that amyloid proteins cause plaque
in the brain. The question remains: Is it plaque that causes Alzheimer’s, or is it the
mass of tangled protein (which causes plaque) that causes Alzheimer’s? In the
August 5, 2004 issue of Neuron, Dr. LaFerla and colleagues wrote: “These findings
raise the intriguing possibility that a multi-antibody-based approach – one targeted
against plaque and one targeted against tangles – may provide the most significant
benefit for the treatment of Alzheimer’s disease.” That is unless you wait too long.
Once the tangles reach a certain point, your brain can’t clear them. “It’s important,”
he said, “to diagnose Alzheimer’s in its earliest stage before the protein becomes a
tangled mass, and to look for ways to clear late-stage tangles.”
Analyzing my parents’ lifestyle, I tried to make sense of the cause of their disease.
The only thing I could think of was they were both smokers until their forties, and
we all ate lots of red meat almost every night. Red meat, if not lean, causes plaque
in the heart. This is not to say it causes the amyloid protein that causes plaque in
the brain. But, the old adage still remains: You are what you eat.
My mother was the most selfless, most self-sacrificial woman I have ever known.
Nothing was as important to her as her children and grandchildren. It was why she
gave up a promising career as an opera singer. From the time my brothers and I
entered elementary school in Brooklyn, NY (this was back in the 1950s) my mother
worked full-time (in Manhattan) so there would be less of a burden on my father.
She loved to laugh and make others laugh. Her personality and effervescence was
infectious. She deprived herself of the many rewards she could afford, so she would
have that much more money to leave to her children. In that, she was steadfast.
Believe me, she had her complaints and demands – and many opinions – but don’t
we all?
My mother started slowly with the progression of her disease. She could no longer
stay at home because there was no one to take care of her twenty-four hours a day.
I made the decision to place her into assisted living, where she could live in an
apartment with her own furniture and have her meals in a restaurant–style setting,
with her medications administered to her four times a day. Of course this was
expensive, but we had no other choice; she wouldn’t allow strangers in her home. I
visited her almost everyday and spoke with her about everything imaginable. She
seemed okay, but she wasn’t. She was forgetting things at a rapid clip. It was
difficult for her to make friends, she hated the food, and she became resentful and
excitable. Still, we stuck to our plan. Every weekend my wife and I would bring our
children there for lunch, and my mother’s spirit soared. We brought in pizza,
Chinese food (her favorite), deli, homemade meals that she had taught me to cook
every Sunday growing up. We spent hours with her and she laughed and laughed
(she was always my best audience). But when we were gone, the nurses would call
us daily and tell us how she would get undressed and wander her room naked. From
then on, whenever I would visit her, I would go to the nurses’ station first and ask
them to go into her room to see if she was dressed. The last thing I wanted was to
see her naked. (I didn’t need that nightmare.) The staff also said she was starting
fights with the other patients and physically hurting them. It was time to move her
into a nursing home. She was progressing faster than my father had.
When we moved her into the home, I went through her belongings in her condo and
found old pictures of family, dating back to when she was a little girl. I hung them
all over her new room. The long-term memories are a comfort to the patient, and
with her violent outbursts, she needed a comfort zone to recollect herself. I even
found her high school year book. We went through it and she remembered so many
old friends. I took her to restaurants (her favorite pastime), as did my brothers. My
wife and I took her to religious services (as she was a devout woman). Her dignity,
and whatever moments of happiness she could experience, was the best emotional
medicine for her.
Every day I was at the home I noticed something that bothered me. Very few people
came to visit their relatives. Even on weekends. These poor souls cried all day,
screaming out their children’s names while trying to convince themselves and
everyone around them that their son or daughter was coming that day.
But, they never did.
Many family members think that because their loved one is forgetting their name
they no longer remember them and don’t have to visit anymore. But many
Alzheimer’s patients remember it as they sit alone and reflect, and because time
moves so slowly for them it seems like an eternity since anyone has come to see
them. It is sad and pathetic. My parents were there when I was a child; I had to be
there when they became one.
My mother got worse very quickly (as had my father) and became even more
combative. Then, she couldn’t, or wouldn’t, do anything herself. She had diabetes
and emphysema (which convinced me to finally quit smoking). But I had a family,
and more and more I had to be home for teenagers who needed rides and the such.
Everyday visits turned to three times a week and weekends. In a short time her
beautiful hair turned completely gray and scraggly, her teeth began to fall out, her
memory got worse, and she was relegated to wearing adult diapers. However, it was
two months until my daughter’s Bat Mitzvah (when a girl turns thirteen and is
allowed to read from the Torah) and I was busy planning the ceremony and
reception. To my amazement, my mother kept talking about how she couldn’t wait
to go. She was subconsciously willing herself to live; she wanted to see her
grandchild become a woman in the eyes of her faith. It was the one thing she
refused to forget.
We hired a nurse for the day of the celebration, had a hair appointment set up, and
clothes picked out for my mother. We thought she might last through a half hour of
the two-hour service, but she sat there in the front row with the rest of the family
and lasted the whole time. I suggested to my brother that we allow her to go to the
reception for the cocktail hour. She made it through the hour as if she were the
honoree. People came up to her, and I never saw her smile so much. It was as if the
disease had disappeared. After the cocktail hour, the candle lighting ceremony
began. My mother was called up to light the second candle, after my daughter lit the
first one in memory of my father. My brother wheeled my mother up to the cake in
the middle of the dance floor (to a standing ovation) and led her to her
granddaughter. My mother took the long candle and blew it out. Everyone laughed
and so did she. Re-lit, she was directed to light a candle on the cake. She then
leaned in toward my daughter to give her a kiss, got back in her wheelchair, and
waved to everyone, most with tears in their eyes. (My mother was such a diva.) We
were about to have the nurse take her back, but dear ol’ mom was having a grand
time. She ate more than usual, with her six grandchildren around her, then left the
reception after dessert. It was a miracle. Somewhat like the miracle of my father
squeezing my hand right before he died.
It was one of the happiest days of my life.
For two obvious reasons.
Shortly afterward, my mother no longer remembered her grandchildren, then her
children and my father (an Alzheimer’s victim forgets the most recent memories
first and the oldest ones last). By then, she was completely bedridden. She forgot
how to eat and swallow and the doctor said it was a matter of weeks. We decided
against any life support, because it was in her living will, and she quickly shriveled
up into a shell of herself. It was horrible to witness. Some people say they can’t
handle that and they leave their parents to die alone, but my mother would never
have left my side, no matter how painful it was for her to see me in that state. I
wasn’t going to leave her.
For three weeks, my mother lay in a coma. And for three weeks we were there by her
bedside. It was our duty, what we expected of ourselves, the right thing to do, as I
explained to my two teenagers. By the third week of her coma, her weight had
dropped to less than 70 pounds and she developed pneumonia. Her breathing
became labored. Her emphysema became worse and her throat kept filling with
phlegm. One episode was so frightening that she started to turn blue from
asphyxiation. I put a surgical glove on my right hand, put my left arm behind her
back, and bent her forward, hoping she would cough it up. When she didn’t, I stuck
my fingers down her throat and pulled out a large mass. She began breathing
normally again. Yes, at this point I wanted my mother to die, but I wanted her to die
peacefully.
After three weeks in a coma, we were all sitting in my mother’s hospital room: Me,
my wife and kids, and my brother, his wife and son. It was the High Holy Day of
Rosh Hashanah (the Jewish New Year, the ten-day period where you atone for your
sins), and we had just returned from services. Suddenly, we heard, “What are you
doing here?” It was my mother’s weak voice. Now, all my life my mother told us that
God makes sure the Jewish New Year is filled with sunshine (and most of the time
she was right). Upon hearing her, I noticed the sun shining through her window (she
was right again). We turned toward her in shock.
My brother went up to her bedside. “Mom, do you know who I am?”
She said, “Of course, you’re Barry.”
He asked her, “Are you hungry?”
In her typically old Jewish way, she answered, “I could eat.”
“What’s your favorite food?”
“You know, vanilla ice cream.” (It was.)
He went and got her a Dixie cup of vanilla ice cream and began feeding it to her in
little increments. She kept saying, “Mmmm.” When she finished the entire cup, she
said, “I’m tired now.” Every one of us leaned down to kiss her and she kissed each of
us. She closed her eyes and fell back into her coma. We all looked at each other,
asking, “What was that?”
It was my mother saying goodbye to us, as my father had done when he squeezed
my hand. It was my mother telling us everything would be alright. It was my mother
telling us to go on with our lives, that she would always love us.
It was my mother being a mother one last time.
Three days later, at eighty years of age, a wonderful lady passed on. She passed on
to a better place, filled with many memories of reciprocal love and devotion.
How do we stop this? If we had the answer, tens of millions of people would not be
going through this agony, and tens of millions more caregivers, like myself, would
not be faced with emotional and financial suffering for years on end. Presently, there
are almost 5 million Alzheimer’s victims in the United States, and 18 million
worldwide. The Alzheimer’s Association projects those numbers will quadruple in
the next twenty to thirty years (that’s 72 million people!), causing immeasurable
hardship for everyone, as well as for governmental health coverage.
The governments of the world, and the people of the world, need to take
responsibility and start fighting this terrorist now. We must all be our brother’s (and
sister’s) keeper. Otherwise, Alzheimer’s disease will be the Baby Boomers’
swansong.
Should our children be forced to worry even more in their lives? Should they be
forced to watch their loved ones live such a brutal end? There is a vicious killer
attacking without regard to race, religion, or nationality, and if we let it continue to
fester and spread, we will soon have an epidemic of unimaginable proportions
worldwide.
Something must be done!
We are a world made up of good people, loving people, as proven by the relief
visited upon the tsunami victims. Billions of dollars of aid came pouring in from all
over the world, from people and governments. Can’t we do the same for killer
diseases? More people die each year from cancer, heart disease, and Alzheimer’s
disease than from tsunamis, hurricanes, tornadoes, and earthquakes combined.
If we all take an active part in making our lives safer, even in the smallest of ways,
collectively we will make a huge difference. As I experienced with my parents’
disease, little miracles happen when your spirit leads your way. It’s time we all come
together and create a big miracle.
ALZHEIMER’S DISEASE
(according to the American Alzheimer’s Association)
STATISTICS:
Increasing age is the greatest risk of getting Alzheimer’s disease.1 in 10
individuals over the age of 65, and 50% over the age of 85 suffer from it. Some
forms of Alzheimer’s can strike individuals in their 30s and 40s.
Life expectancy averages from 8-20 years after diagnosis.
7 out of 10 people with Alzheimer’s live at home – with 24/7 care required.
ALZHEIMER’S PATIENTS EXPERIENCE:
3.4 times more hospital stays than patients without the disease.
3.2 times higher costs for hospital care ($7,074 vs. $2,204/person).
3.8 times higher medicare home health care costs ($748 vs. $190/person).
1.3 times more physicians visits (14.4 vs. 1.3 visits/person)
ALZHEIMER’S COST TO GOVERNMENT, LONG-TERM CARE, & BUSINESS:
Alzheimer’s is the 3rd most costly disease after heart and cancer and unlike these others there is no cure.
By 2010, Medicare costs are expected to increase 54% from $31.9 billion dollars to $ 49.3 billion.
By 2010, residential dementia care will increase 80% from $18.2 billion to $33 billion.
Cost to American businesses is $61 billion yearly: $24.6 billion for Alzheimer’s healthcare and $36.5 billion to cover caregivers’ costs for lost productivity, absenteeism, and worker replacement.
Half of all nursing home residents have Alzheimer’s or related dementia with an average cost of $50,000-$100,000 yearly in many locations.
ALZHEIMER’S IS ON THE RISE AS A MAJOR KILLER:
Heart disease is down 3%.
Cancer is down 1%.
Cardiovascular disease is down 2.8%.
Alzheimer’s disease is up 5.8% – with deaths up over 20% since 1999.
My father was sitting on the sofa in his condo when I suddenly saw a look of fright
fill his face. His eyes opened wide, and his face contorted. He started screaming,
raising his arms to cover his face, and kicking his legs out in front of him. “HELP!
HELP! GET AWAY!”
I sat there in shock, not knowing what was happening or what to do. Prior to this,
we were having a conversation and all was okay, except he thought I was his
mother, as if it were a day in his childhood.
I yelled back, “What’s happening?” He said monsters were coming through the walls.
I never saw someone so frightened. His body was in a fetal position, and he was
crying as if he were a child living out his worst nightmare. I jumped up without
thinking and grabbed the chair I was sitting on and began swinging it around. I tried
to force these invisible monsters out of his home, but to no avail.
I ran over to my father, grabbed his shaking body, and held him tightly in my arms. I
began talking to him as if I were his mother; mixing the words I somehow
remembered hearing in Yiddish and Hebrew when I was a boy. “Sha (Be quiet), Izzy.
Hineini (I’m here).”
“Make them go away, Mama,” my father pleaded like a child.
And that was what my father had become.
I was now the parent.
My father grew up in Brooklyn, New York, a Depression-era child, scared of the
world. My grandparents, immigrants from Rumania, spoke Yiddish, a combination of
German and English, and other Eastern European languages. My grandmother
passed away when I was a teenager, and I was now in my forties, but to my father I
was his mother at that moment. Where the words came from I don’t now, but after a
lifetime of listening to my parents speak Yiddish at the dinner table so my brothers
and I wouldn’t know what they were saying, and taking German for a few years in
high school to find out what they were saying, I had picked up a few words and
phrases.
I rocked my father in my arms and screamed at these intruders, “GENUG! (ENOUGH!)
GAI KOCKEN AHFEN YAM!” (GET OUT OF HERE!) until his crying subsided, which told
me the monsters were retreating. “Izzy,” I said. He opened his eyes and looked at
me. “Gornisht! (Nothing!) Farshtaist? (You understand?)” My father stopped shaking,
stopped crying, only now I was shaking and crying. No one wants anyone to suffer
such horrific fear.
But, my father had Alzheimer’s disease.
Suffering and torment was only the beginning of the nightmare.
While my father was still living, the stress it put on my mother was debilitating. She
did her best with him until her nerves got the best of her. I sent her to Houston for
two weeks to stay with my brother. I moved out of my own house, with the blessing
of my wife and children, and into my parents’ condo. As a writer, I was fortunate
enough to work my own schedule, so I spent all day with my father cooking meals
that his mother used to cook when he was a boy, hoping to make him feel more
secure. I purchased his favorite foods and treats, and I took walks around his condo
development, talking to him about the past and trying to bring the present into the
conversation. I never mentioned his disease to him. I find too many people talk to
Alzheimer’s victims as if they’re not there, and/or they try to correct the mistakes
they make. They are going to forget a few minutes later; however, those few
minutes of confusion fills them with terrible trepidation and guilt. The two weeks I
spent with my father, I was either his mother, or sister, and I played the role. I never
allowed him to feel uncomfortable or confused or angry with himself. You can’t
reverse the effects of Alzheimer’s disease, so the best a caregiver can do is to ‘go
with the flow’ and bask in the victim’s moments of happy reflection, or segue into
something that will make the victim’s mind switch gears from the torment of not
remembering.
Alzheimer’s disease comes in four stages. The first stage can go unnoticed for five
to ten years. The second stage is when the person knows he or she has the disease
and is angry at themself because they can’t remember what they are saying. The
third stage is when the afflicted no longer knows he or she has Alzheimer’s and it
no longer bothers them. This is the calm before the storm, the time some greater
force gives us to strengthen our resolve to withstand the onslaught of the end.
Alzheimer’s disease, depending on the person’s care and genetics can last from a
few years to 10-15 years in length, and sometimes longer.
My father finally got to the point where we couldn’t take care of him anymore. He
couldn’t dress himself, he didn’t want to eat, he couldn’t bathe, and he couldn’t
control his bodily functions. We had a family meeting. Because of the effect it was
having on my mother, my brothers and I decided it was time to place him in a home
where he would get better care. However, no one can take care of an Alzheimer’s
patient better than their loved ones in a familiar familial setting. Friends, aides,
church/synagogue members, and support groups will help out if you ask for that
help (that’s what your local Alzheimer’s chapter is for). It is not the time to be
proud.
We told my father he was going into the hospital (not a home, which scared him)
because he wasn’t eating and we needed to build up his strength so he could come
home. We told him that every time he said he wanted to leave with us. (Sometimes
you have to hide the truth to assuage their fears.) It was a sickly feeling walking
away from him that first time, leaving him in the company of strangers, some who
were so far gone that it was like an insane asylum for children. As I left, I turned and
looked at him sitting in a wheelchair, scared. I felt like I was abandoning him. He
looked as if he was being abandoned.
I never felt so guilty in my life.
My father got worse very quickly. He would walk into other peoples’ rooms and get
in their bed, thinking it was his room. He would sit in the cafeteria staring at his
food, not knowing what to do with it, until he wilted down from 180 pounds to 105.
He smiled whenever he saw us, but I don’t think he knew who we were. However, we
continued to visit him regularly, hoping he might have a second of remembrance
and happiness.
My father and I had a special relationship. I became what he always wanted to be. I
was in show business. At the opening night performance of my Broadway musical,
CANTERBURY TALES, I remember watching him stare at my name above the title, the
pride so evident on his face. When the show ended, I watched him stand with the
audience, applauding, tears streaming down his face. He thought I could do
anything. My father, although a brilliant artist all his life like his own father was, was
foremost a teacher in my eyes. He taught me to reach for the stars, to dream, and to
not give up; to be who I am, to be proud and confident, to seek solace with my
conscience, to revere wisdom and beauty, to hope and help others. I never
remember him voicing a negative comment, nor speaking a harsh word, nor
espousing a prejudicial epithet toward, or about, anyone or anything. There was a
preponderance of love in him, a love that was visible and shared with all he came
into contact.
Family was all-important, all encompassing to my father. He loved my mother
unconditionally, and his children and grandchildren passionately. He wasn’t a
religious man, nor was he a pious man. To him, humanity was his persuasion. To
live life with dignity, with compassion toward (wo)man and nature, and respect for
yourself, made my father a reverent man, a humanitarian, in our eyes.
Finally, after four years, my father’s kidneys failed and he was rushed to the
hospital. The family was called, and as we had a DNR (Do Not Resuscitate) order, we
went to the hospital to stay with him until he passed on. I remember my brothers
and sister-in law, and my wife and children, kiss him goodbye in the emergency
room. He was slipping into a coma, and it was heart-wrenching watching him leave
us. I was the last one to say goodbye. I took his hand, kissed his cheek, and
whispered in his ear how much I love him. I then said, “I just got my first novel
published.” To my shock, and happiness, he squeezed my hand slightly to let me
know he was proud of me.
It was the last memory my father took with him.
And it was beautiful for both of us.
When Your Parent Becomes Your Child: A Personal Love Story (Part 2)
I consider myself a reliable source in care giving, one who understands the decline
of the body and mind from month to month. I, unfortunately, lost both of my
parents to Alzheimer’s disease. As the main caregiver for them, a part of my heart
and soul was forever taken from me; a part I will never be able to reclaim. However,
it developed a resolve in me, a spirit I never knew I had. Although it took an hour of
driving round trip to be with each of my parents, the thought never crossed my
mind. It felt good to make them happy; to make them feel secure that I would
always be there to protect them. My entire family reacted the same way. Like we
were taught in our youth: “Be a mensch!” (a really good person).
Financially, my parents’ small fortune was wiped out (the average cost in care is
$170,000 per patient). But, the worst of it was my teenaged children had to watch
each grandparent whither away and forget who they were. With it (doubly) in their
genes, they worry it will happen to me – and to them.
My father died at 74 years young. Four years later, the same killer attacked my
mother. Was God punishing my family? Had we not lead a life of which He was
proud? There are no answers, and people must remember that. It is no one’s fault.
However, we can stop it. But, more research is needed, and research costs money.
According to Frank LaFerla, PhD, and colleagues at the University of California,
Irvine, they demonstrated in the lab (with mice) that amyloid proteins cause plaque
in the brain. The question remains: Is it plaque that causes Alzheimer’s, or is it the
mass of tangled protein (which causes plaque) that causes Alzheimer’s? In the
August 5, 2004 issue of Neuron, Dr. LaFerla and colleagues wrote: “These findings
raise the intriguing possibility that a multi-antibody-based approach – one targeted
against plaque and one targeted against tangles – may provide the most significant
benefit for the treatment of Alzheimer’s disease.” That is unless you wait too long.
Once the tangles reach a certain point, your brain can’t clear them. “It’s important,”
he said, “to diagnose Alzheimer’s in its earliest stage before the protein becomes a
tangled mass, and to look for ways to clear late-stage tangles.”
Analyzing my parents’ lifestyle, I tried to make sense of the cause of their disease.
The only thing I could think of was they were both smokers until their forties, and
we all ate lots of red meat almost every night. Red meat, if not lean, causes plaque
in the heart. This is not to say it causes the amyloid protein that causes plaque in
the brain. But, the old adage still remains: You are what you eat.
My mother was the most selfless, most self-sacrificial woman I have ever known.
Nothing was as important to her as her children and grandchildren. It was why she
gave up a promising career as an opera singer. From the time my brothers and I
entered elementary school in Brooklyn, NY (this was back in the 1950s) my mother
worked full-time (in Manhattan) so there would be less of a burden on my father.
She loved to laugh and make others laugh. Her personality and effervescence was
infectious. She deprived herself of the many rewards she could afford, so she would
have that much more money to leave to her children. In that, she was steadfast.
Believe me, she had her complaints and demands – and many opinions – but don’t
we all?
My mother started slowly with the progression of her disease. She could no longer
stay at home because there was no one to take care of her twenty-four hours a day.
I made the decision to place her into assisted living, where she could live in an
apartment with her own furniture and have her meals in a restaurant–style setting,
with her medications administered to her four times a day. Of course this was
expensive, but we had no other choice; she wouldn’t allow strangers in her home. I
visited her almost everyday and spoke with her about everything imaginable. She
seemed okay, but she wasn’t. She was forgetting things at a rapid clip. It was
difficult for her to make friends, she hated the food, and she became resentful and
excitable. Still, we stuck to our plan. Every weekend my wife and I would bring our
children there for lunch, and my mother’s spirit soared. We brought in pizza,
Chinese food (her favorite), deli, homemade meals that she had taught me to cook
every Sunday growing up. We spent hours with her and she laughed and laughed
(she was always my best audience). But when we were gone, the nurses would call
us daily and tell us how she would get undressed and wander her room naked. From
then on, whenever I would visit her, I would go to the nurses’ station first and ask
them to go into her room to see if she was dressed. The last thing I wanted was to
see her naked. (I didn’t need that nightmare.) The staff also said she was starting
fights with the other patients and physically hurting them. It was time to move her
into a nursing home. She was progressing faster than my father had.
When we moved her into the home, I went through her belongings in her condo and
found old pictures of family, dating back to when she was a little girl. I hung them
all over her new room. The long-term memories are a comfort to the patient, and
with her violent outbursts, she needed a comfort zone to recollect herself. I even
found her high school year book. We went through it and she remembered so many
old friends. I took her to restaurants (her favorite pastime), as did my brothers. My
wife and I took her to religious services (as she was a devout woman). Her dignity,
and whatever moments of happiness she could experience, was the best emotional
medicine for her.
Every day I was at the home I noticed something that bothered me. Very few people
came to visit their relatives. Even on weekends. These poor souls cried all day,
screaming out their children’s names while trying to convince themselves and
everyone around them that their son or daughter was coming that day.
But, they never did.
Many family members think that because their loved one is forgetting their name
they no longer remember them and don’t have to visit anymore. But many
Alzheimer’s patients remember it as they sit alone and reflect, and because time
moves so slowly for them it seems like an eternity since anyone has come to see
them. It is sad and pathetic. My parents were there when I was a child; I had to be
there when they became one.
My mother got worse very quickly (as had my father) and became even more
combative. Then, she couldn’t, or wouldn’t, do anything herself. She had diabetes
and emphysema (which convinced me to finally quit smoking). But I had a family,
and more and more I had to be home for teenagers who needed rides and the such.
Everyday visits turned to three times a week and weekends. In a short time her
beautiful hair turned completely gray and scraggly, her teeth began to fall out, her
memory got worse, and she was relegated to wearing adult diapers. However, it was
two months until my daughter’s Bat Mitzvah (when a girl turns thirteen and is
allowed to read from the Torah) and I was busy planning the ceremony and
reception. To my amazement, my mother kept talking about how she couldn’t wait
to go. She was subconsciously willing herself to live; she wanted to see her
grandchild become a woman in the eyes of her faith. It was the one thing she
refused to forget.
We hired a nurse for the day of the celebration, had a hair appointment set up, and
clothes picked out for my mother. We thought she might last through a half hour of
the two-hour service, but she sat there in the front row with the rest of the family
and lasted the whole time. I suggested to my brother that we allow her to go to the
reception for the cocktail hour. She made it through the hour as if she were the
honoree. People came up to her, and I never saw her smile so much. It was as if the
disease had disappeared. After the cocktail hour, the candle lighting ceremony
began. My mother was called up to light the second candle, after my daughter lit the
first one in memory of my father. My brother wheeled my mother up to the cake in
the middle of the dance floor (to a standing ovation) and led her to her
granddaughter. My mother took the long candle and blew it out. Everyone laughed
and so did she. Re-lit, she was directed to light a candle on the cake. She then
leaned in toward my daughter to give her a kiss, got back in her wheelchair, and
waved to everyone, most with tears in their eyes. (My mother was such a diva.) We
were about to have the nurse take her back, but dear ol’ mom was having a grand
time. She ate more than usual, with her six grandchildren around her, then left the
reception after dessert. It was a miracle. Somewhat like the miracle of my father
squeezing my hand right before he died.
It was one of the happiest days of my life.
For two obvious reasons.
Shortly afterward, my mother no longer remembered her grandchildren, then her
children and my father (an Alzheimer’s victim forgets the most recent memories
first and the oldest ones last). By then, she was completely bedridden. She forgot
how to eat and swallow and the doctor said it was a matter of weeks. We decided
against any life support, because it was in her living will, and she quickly shriveled
up into a shell of herself. It was horrible to witness. Some people say they can’t
handle that and they leave their parents to die alone, but my mother would never
have left my side, no matter how painful it was for her to see me in that state. I
wasn’t going to leave her.
For three weeks, my mother lay in a coma. And for three weeks we were there by her
bedside. It was our duty, what we expected of ourselves, the right thing to do, as I
explained to my two teenagers. By the third week of her coma, her weight had
dropped to less than 70 pounds and she developed pneumonia. Her breathing
became labored. Her emphysema became worse and her throat kept filling with
phlegm. One episode was so frightening that she started to turn blue from
asphyxiation. I put a surgical glove on my right hand, put my left arm behind her
back, and bent her forward, hoping she would cough it up. When she didn’t, I stuck
my fingers down her throat and pulled out a large mass. She began breathing
normally again. Yes, at this point I wanted my mother to die, but I wanted her to die
peacefully.
After three weeks in a coma, we were all sitting in my mother’s hospital room: Me,
my wife and kids, and my brother, his wife and son. It was the High Holy Day of
Rosh Hashanah (the Jewish New Year, the ten-day period where you atone for your
sins), and we had just returned from services. Suddenly, we heard, “What are you
doing here?” It was my mother’s weak voice. Now, all my life my mother told us that
God makes sure the Jewish New Year is filled with sunshine (and most of the time
she was right). Upon hearing her, I noticed the sun shining through her window (she
was right again). We turned toward her in shock.
My brother went up to her bedside. “Mom, do you know who I am?”
She said, “Of course, you’re Barry.”
He asked her, “Are you hungry?”
In her typically old Jewish way, she answered, “I could eat.”
“What’s your favorite food?”
“You know, vanilla ice cream.” (It was.)
He went and got her a Dixie cup of vanilla ice cream and began feeding it to her in
little increments. She kept saying, “Mmmm.” When she finished the entire cup, she
said, “I’m tired now.” Every one of us leaned down to kiss her and she kissed each of
us. She closed her eyes and fell back into her coma. We all looked at each other,
asking, “What was that?”
It was my mother saying goodbye to us, as my father had done when he squeezed
my hand. It was my mother telling us everything would be alright. It was my mother
telling us to go on with our lives, that she would always love us.
It was my mother being a mother one last time.
Three days later, at eighty years of age, a wonderful lady passed on. She passed on
to a better place, filled with many memories of reciprocal love and devotion.
How do we stop this? If we had the answer, tens of millions of people would not be
going through this agony, and tens of millions more caregivers, like myself, would
not be faced with emotional and financial suffering for years on end. Presently, there
are almost 5 million Alzheimer’s victims in the United States, and 18 million
worldwide. The Alzheimer’s Association projects those numbers will quadruple in
the next twenty to thirty years (that’s 72 million people!), causing immeasurable
hardship for everyone, as well as for governmental health coverage.
The governments of the world, and the people of the world, need to take
responsibility and start fighting this terrorist now. We must all be our brother’s (and
sister’s) keeper. Otherwise, Alzheimer’s disease will be the Baby Boomers’
swansong.
Should our children be forced to worry even more in their lives? Should they be
forced to watch their loved ones live such a brutal end? There is a vicious killer
attacking without regard to race, religion, or nationality, and if we let it continue to
fester and spread, we will soon have an epidemic of unimaginable proportions
worldwide.
Something must be done!
We are a world made up of good people, loving people, as proven by the relief
visited upon the tsunami victims. Billions of dollars of aid came pouring in from all
over the world, from people and governments. Can’t we do the same for killer
diseases? More people die each year from cancer, heart disease, and Alzheimer’s
disease than from tsunamis, hurricanes, tornadoes, and earthquakes combined.
If we all take an active part in making our lives safer, even in the smallest of ways,
collectively we will make a huge difference. As I experienced with my parents’
disease, little miracles happen when your spirit leads your way. It’s time we all come
together and create a big miracle.
ALZHEIMER’S DISEASE
(according to the American Alzheimer’s Association)
STATISTICS:
Increasing age is the greatest risk of getting Alzheimer’s disease.1 in 10
individuals over the age of 65, and 50% over the age of 85 suffer from it. Some
forms of Alzheimer’s can strike individuals in their 30s and 40s.
Life expectancy averages from 8-20 years after diagnosis.
7 out of 10 people with Alzheimer’s live at home – with 24/7 care required.
ALZHEIMER’S PATIENTS EXPERIENCE:
3.4 times more hospital stays than patients without the disease.
3.2 times higher costs for hospital care ($7,074 vs. $2,204/person).
3.8 times higher medicare home health care costs ($748 vs. $190/person).
1.3 times more physicians visits (14.4 vs. 1.3 visits/person)
ALZHEIMER’S COST TO GOVERNMENT, LONG-TERM CARE, & BUSINESS:
Alzheimer’s is the 3rd most costly disease after heart and cancer and unlike these others there is no cure.
By 2010, Medicare costs are expected to increase 54% from $31.9 billion dollars to $ 49.3 billion.
By 2010, residential dementia care will increase 80% from $18.2 billion to $33 billion.
Cost to American businesses is $61 billion yearly: $24.6 billion for Alzheimer’s healthcare and $36.5 billion to cover caregivers’ costs for lost productivity, absenteeism, and worker replacement.
Half of all nursing home residents have Alzheimer’s or related dementia with an average cost of $50,000-$100,000 yearly in many locations.
ALZHEIMER’S IS ON THE RISE AS A MAJOR KILLER:
Heart disease is down 3%.
Cancer is down 1%.
Cardiovascular disease is down 2.8%.
Alzheimer’s disease is up 5.8% – with deaths up over 20% since 1999.