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WHEN
DOGWOODS BLOOM
An Alzheimer’s Story
By Demp
www.demppress.com
“JuliaMae was my mother, and this is the story of what I remember about her
and the progression of her Alzheimer’s disease.” This author lived through
a very difficult period in his Mother’s life. His recollection of
JuliaMae’s slide through the beginning and final end stage of Alzheimer’s
disease is a gripping, heartwarming love story. In every word you feel his
total love for her, his total giving of himself no matter what it took.
Demp visited his Mother every Sunday at home until she became unable to stay
alone. Then he cared for her in his own home, with the help of daycare and
then a variety of daytime sitters. As long as she was able to recognize her
old home, he took JuliaMae there every Sunday for their dinner. For many
months she enjoyed long rides in the car, visiting relatives in nearby
towns.
From his descriptions, you can just picture JuliaMae, a pretty woman,
strong-minded and very talkative. Her memories of growing up on the farm
were clear and detailed, but she could not remember what happened ten minute
ago. JuliaMae married a boy whom she befriended as other kids made fun of
his clothes. They were married for 53 years before Parkinson’s ended his
life. He had only a third grade education but he was a natural farmer,
smart and handy. JuliaMae recalled many fond stories about her husband and
about her parents often while she could still talk. JuliaMae looked forward
to seeing the Dogwood trees bloom: a happy memory of family gatherings at
that time of the year for the sheep-shearing. The older brothers and sister
came home to join in the work and receive their share of wool money.
JuliaMae’s son describes the early signs of her Alzheimer’s: occasional
momentary confusion that became a daily event, repeating herself, short-term
memory loss, making strange or inappropriate remarks, and paranoia. While
she was still at home, her son took care of paying her bills. The long
distance carriers seemed to change every month, as she just said OK to those
who called wanting her to switch. She could be sweet and happy, or
cantankerous at times. She could wear your patience thin … and one time her
son decided to tell her he couldn’t spend so much time with her. But as
they drove to his home for the weekend, she was so happy he didn’t have the
heart to say that to her. He decided it would be “stupid & cruel” and
resolved “never do or say anything that could be taken by her as an
indication that I did not want her to be around me.”
When he first took her home to live with him, Demp knew she would probably
be there for the rest of her life or until she had to go into a nursing
home. However, he became the ultimate caregiver … learning to feed her, to
bathe her, to dress her, to diaper her, to give her medications, to carry
her when she could no longer walk.
Demp was with her day and night during her last days in the hospital. As
good as some of the nurses are, he feels it is best to stay with the patient
full-time to watch for any change in condition.
JuliaMae passed away quietly in her sleep at the age of 81. In
telling her story, her son has written a handbook that anyone in a similar
situation should read.
Demp’s
love and devotion reminded me of a story on the internet told by a nurse: “
On a busy morning, about 8:30 an elderly man in his eighties arrived to have
stitches removed from his thumb. He said he was in a hurry as he had an
appointment at 9:00 am. I took his vital signs and had him take a seat,
knowing it would be over an hour before someone would be able to see him. I
saw him looking at his watch and decided, since I was not busy with another
patient, I would evaluate his wound. On exam, it was well healed, so I
talked to one of the doctors, got the needed supplies to remove his sutures
and redress his wound. While taking care of his wound I asked him if he had
another doctor’s appointment this morning, as he was in such a hurry. The
gentleman told me no, that he needed to go to the nursing home to eat
breakfast with his wife. I inquired as to her health. He told me that she
had been there for a while and that she was a victim of Alzheimer’s
Disease. As we talked, I asked if she would be upset if he was a bit late.
He replied that she no longer knew who he was, that she had not recognized
him in five years now, I was surprised, and asked him “And you still go
every morning, even though she doesn’t know who you are?” He smiled as he
patted my hand and said, “She doesn’t know me, but I still know who she
is.” I had to hold back tears as he left, and I had goose bumps on my arm,
and thought, “That is the kind of love I want in my life.”
True love is an
acceptance of all that is, has been, will be, and will not
be.
Life isn’t about how
to survive the storm, but how to dance in the rain. And that’s ‘when the
dogwoods bloom.’
Book reviewed by
Martha Lyons.
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THE
CORRECTIONS
by Jonathan Franzen
Published
by Farrar Straus & Giroux
September 2001
ISBN: 0374129983
The Corrections is a story about a typical dysfunctional family.
We meet sons Gary and Chip, daughter Denise, Enid the mother and Albert the
father. They are all very unhappy people, unhappy with each other and unhappy
with themselves.
Al is slipping in and out of that vague and sometimes ugly world of
Parkinson’s disease. Enid is an emotional basket case, struggling to
continue what she thinks is their “normal” life. Berating Al for every
miscue keeps her in turmoil. She sees a holiday cruise as a chance to have
some fun and restore their lives; that somehow getting away from home will
transform them.
The cruise is a total disaster. Enid is embarrassed constantly as Albert
drifts into his fantasy world at the worst moments. He ends up actually
falling overboard and is dragged some distance before being rescued. His condition worsens.
This year Enid is obsessed with the idea of having Christmas at home with
all three children. She fears it will be the last time for Albert. Oldest son Gary, an investment banker, is suspicious to the point of paranoia.
Chip is an irresponsible professor of English, flirting and flinging with
his beauteous students until thrown out.
Denise is an accomplished chef, running her own highly successful restaurant
in New York. Enid suspects she is having an affair with a married man.
None of the three want to go home for
Christmas.
Christmas arrives and the author brings all the relationships into focus.
Gary is the first to arrive. Enid has a list of jobs for him and he is resentful and in a bad mood. Albert is in his
basement workshop with his shotgun nearby. Denise arrives and starts
planning and preparing meals. Chip calls from Lithuania and
says that he will be home as soon as he can get out of the country. He arrives sans suitcase or money on Christmas Day.
Albert is overjoyed
to see Chip. Chip is amazed at his father’s welcome - the father he felt he
could never please, the father he felt never loved him.
The three children discuss what to do about Dad, and Mom too. Denise and Chip are
reluctant to resolve this quandary. Gary wants things settled right now
with Dad going to the nursing home.
The ending is perfect. In elder law we see these situations every day. The
parents and children switch roles, equally hard on both.
The familiar words and scenes struck me as the dilemma is revealed. The
author ambitiously delves into all the cross-relationships. The Corrections
is very interesting but long novel.
Book reviewed by
Martha Lyons.
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ANOTHER COUNTRY
..Navigating the Emotional Terrain of Our
Elders
By Mary Pipher, Ph.D. Published by Riverhead Books 1999
"Adults have always worried about aging parents, but our current situation is unique. Never before have so many people lived so far away from the old people they love. And never have old people lived to be so old." The author speaks to this dilemma with reassurance and ideas to help us all. She talks about rescuing the very "people you thought were superhuman. To see your parents as vulnerable is hard. At the same time you feel sorry for yourself."
Elders feel frustration, conflict, guilt, abandonment, misunderstood; their children feel unappreciated, stressed and guilty. Feelings are hurt. Unrealistic plans or decisions are made by each side. Mary Pipher
illustrates these diverse problems with many stories throughout the book.
Mom in Nevada is dying of cancer. Daughter in graduate school gets fantastic job offer in large university on East Coast. The Dean is not sympathetic to her need for time to be with Mom. Should she pass up a great career job and find work in Nevada?
Daughter with two small kids, caring for faraway parents, one in the hospital, one in rehab in two different towns. Daughter considering Prozac.
Mom is in the hospital with heart attack. Daughter Karen finds herself facing across the bed her Mom's new husband. Karen doesn't need this extra stress right now.
Bill and Erma retire and move to Palm Beach to play golf, far away from daughter Ellen. Grandkids seldom see grandparents and hardly know them. Grandma Erma dies and now Grandpa Bill, who is depressed, ill, confused, wants to move back and be a part of Ellen's family again. Ellen is resentful.
"The young make many of the same mistakes the old do, but the young get excused while the mistakes of the old are not viewed as accidents but rather as loss of functioning ... and such mistakes have implications for their freedom."
Seniors were taught to be independent as they age, yet they need help and can't ask for it. Don't want to "be a burden" on those they love.
"The trick is for younger members of the family to help without feeling trapped or overwhelmed. And for the older members to accept help while preserving dignity and control."
"Adolescence is about the loss of childhood. Old age is about the loss of adult status and power. In both stages, the true self is isolated: in teenagers by a poisonous peer culture, and in seniors by the death of those who have common memories."
Parents of teens often feel hopeless; so do the children of old-old parents. Living into the 70's, 80's and 90's means have difficult choices to make about where to live. There are more options now than before, but how do you know you're making the right one? Another stress to deal with.
The author discusses physical boundaries ... many
necessary tasks may be embarrassing to both parent and child: changing
diapers, bathing, dressing, administering certain medical treatments. And
financial boundaries: Mom needs to let son know everything about her income and assets for long-term planning. Maybe Dad is afraid to let even his wife, let alone his son or daughter, know how wealthy he is. In his opinion his kids were always spendthrifts! Money must be discussed, no matter how difficult that is.
Decision: Do
I tell Aunt Clara she has bad breath? Should we move Mom from Evanston to Cincinnati so I can take care of her? Can I offer to help pay her bills? Mom wonders do I dare ask my daughter to drive me to church? Should I put my son on my checking account? Sometimes it's absolutely necessary to say, I'm taking your car keys before you have an accident .. or, I'm taking you to the doctor for treatment of that infected eye.
Jerry's Mom had Parkinson's and he tried to visit every week, but he worked over 60 hours and had two active teenagers. He hated to miss their ballgames, but felt guilty of he didn't go see Mom.
Cheryl's Mom was in a mental health institution in another state. Flying in to visit Cheryl encountered a bitter, complaining suspicious woman, always accusing Cheryl of something ... stealing her money, neglecting her, etc. Cheryl felt like checking herself in by the time the visit was over.
We need a new way of thinking about old age. Good information helps families
make good decisions together. Knowing our options helps us feel less alone, less
guilty, and more forgiving of one another. When we were young, our parents
didn't understand us. We were the ones from Another Country. Now our
parents are old and we don't understand them. The purpose of this book is to
help each generation understand the other. It accomplishes this serious task
with humor and good sense.
Book reviewed by Martha Lyons.
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LIVING IN
THE LABYRINTH
By Diana Friel McGowin
Published by Delacorte Press, 1993
Diana Friel McGowin
Can you
imagine that a woman suffering dementia is able to write a
book?
Diana Friel McGowin
did.
As a victim of
early-onset Alzheimer's disease, she tells an amazing story of her journey
through the labyrinth of Alzheimer's.
She wonders if the world is ready
for "An Alzheimer's Who Talks" much less "An Alzheimer's Who Talks
Back!"
But this tiny book found a wide
audience.
Here is a very brave woman struggling to make sense
of what is happening to her. Caught unaware by this devastating
disability, she reacts with disbelief and confusion.
Her struggle
to find an explanation for her disorientation, and how she learns to cope,
makes the story she relates so very interesting.
The journey begins with Diana's experiencing occasional bouts of
absent-mindedness, dizzy spells and slurred speech.
Then one day her husband Jack
calls home to ask her to bring him something to eat as he can't get
away from the office for lunch.
She gets the food together.
She goes to her car but hesitates. She is puzzled where to place both
her purse and the lunch box.
That solved, off she goes to his office and on the way she notices
a shopping mall she can't recall ever seeing before.
And then she passes a fire
station also new to her.
When she gives Jack his lunch, she remarks about the
new strip mall and fire station, and asks him when they were built.
Jack laughs and reminds her the
station and mall have been there for a long time.
This news upsets Diana and on the way home she
becomes increasingly agitated. Horns are blowing at her when she stops
at a green traffic light. She can't read the street sign.
Nothing looks familiar.
Still trying to get her bearings she finds herself hopelessly lost
out in open country.
After
asking directions back to her Orlando subdivision, she realizes
that she has been gone over four hours. She closes the drapes, locks
the doors, and curls up on her bed.
That's how Jack finds her when he gets home.
He calls Diana's close friend, Elise,
a nurse, who insists that she see a neurologist immediately.
The test results show no
change from her last MRI when she had a stroke several years ago.
The doctor suggests that she see a
psychologist. She is very unhappy with this lack of
diagnosis.
Two months later she is walking down the hallway at work and
suddenly the floor heaves and sways, pitching her against the wall. When
she gets back to her office, she doesn't recognize her coworkers, or even a
cousin who dropped in.
Finally she has to retire early from her paralegal
job.
Diana goes from doctor to doctor and finally learns
the diagnosis she dreads.
But she takes charge of her life without pity and tells how this
disease changes her life and her relationships with family and
friends.
Don't miss reading this enlightening and heart-wrenching little
book.
Book reviewed by Martha Lyons.
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Coming Reviews
Do you have a book you would like to have reviewed by
Martha?
Contact Martha at Elderlaw@charlie-robinson.com
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