We are grateful that Aunt Goldy’s stroke did not affect any of her physical functions, but it did bring on sudden damage to the memory centers of her brain. True to our family’s refusal to ever give up when faced with a challenge – some would call it stubbornness – my beautiful aunt is bravely working her way back into the historical corners of her mind and reclaiming memories of people, events and emotions.
For Aunt Goldy, the loss happened in a twinkling. One moment she knew who and where she was and
the next she did not. Stroke dementias carry with
them an unexpected suddenness, while Alzheimer's moves along so slowly that it often goes undetected for many years. For my mother,
the loss of identity and her place in the family crept away in dribs and
drabs until the empty spaces became so numerous that she began making up memories to
bring a sense of order back into her life.
The disappearance of familiar places and people happened
over many, many years.
Initially, Mom covered for any lapses in memory by tossing it off as
unimportant, refusing to let it upset her daily life. As time passed and the little bits of
forgetfulness became bothersome, the little gray fibs began. “Oh, of
course, I know who you are.” “I meant to do it that way.” Mom’s coping mechanisms kicked in and she
covered her lack of remembering with a nonchalant defiance of anyone who
questioned her failing abilities.
Eventually, the patterns of small fibs turned into more
elaborate stories, and for several years Mom was able to get by with her
effervescent delivery of these stories.
She was often the center of attention and loved getting a reaction to the story
of the thief who stole her checks, cashed them and used the money to blow up
the baseball stadium. The weaving of
the stories together helped her make sense out of a world she no longer understood. It must have been worrisome to lose track of the
checkbook, and consequently, Mom made up a scenario that gave her a reprieve from the real
reason her checks went missing – she had hidden them in a flower pot on the
back porch and forgotten where she had placed them.
By the time Mom was in the middle stages of Alzheimer’s,
she had forgotten that she could not remember and came to staunchly believe the
stories as actual events in her life.
All kinds of strange things became her memories. Louisa and I could not dissuade her from
believing that a high school boyfriend had started calling on her again after
running across her in a hospital waiting room while our father was having
surgery. We could only surmise that a
nice gentleman waiting for his wife in surgery may have befriended her and she
mistook him for someone she knew from her past.
In retrospect, all this must have been terribly
frightening for Mom. I am certain that
she realized things were not right and did her best to gloss over her
faux-pas. Her coping mechanisms allowed her to get by
for many years until finally she could not make a sound decision or recognize
everyday objects.
The most upsetting realization for my husband and me was that Mom did not recognize us when we visited her. We hoped that over time she would recall our names and faces, but with Alzheimer’s, the memories are gone forever. There is no retrieval system.
The most upsetting realization for my husband and me was that Mom did not recognize us when we visited her. We hoped that over time she would recall our names and faces, but with Alzheimer’s, the memories are gone forever. There is no retrieval system.
* * *
“A Bandaid for the Caregiver” is dedicated to
all those families who journey with memory loss in their lives and the
sharing of hope and joy and new possibilities. In each difficult moment
there lies an opportunity for love.
Journey with courage,
Elaine
Journey with courage,
Elaine
Nominated for a Pulitzer Prize, "Conversations with
Nora: a Family’s Journey with Alzheimer’s" follows the journey of two
sisters, Allison and Louisa, as they each struggle to understand the grip of
Alzheimer's on their family. The novel, inspired by a true story, takes the
reader from the sisters' first realization that something is wrong with Mother;
through her agonizing denial and efforts to thwart the daughters' attempts to
care for her; and then plunges the reader along with the entire family into the
dark and confusing maze of dementia. The path to finding a place where Mother
will be secure and can feel at home is filled with many obstacles, not the
least of which are her own fight for independence and a medical system that
seems unwilling to help them. Told through the conversations between the eldest
daughter Allison and her friend Nora, the healing power of love and caring
takes on a fresh meaning. Nora's supportive, patient, and nonjudgmental
presence provides a safe place for Allison to move through a raw and painful
reality toward healing.
THE BANDAID BOX…
Surround your parent with a safe emotional
environment. Mom cannot help herself, so
you become her helper. Relax and just
hold her hand, sit next to her, enjoy quiet moments in each other’s
company. You are not the enemy. You are her beloved child and caregiver, even
if she cannot remember this. Be strong
in your convictions that, together, you can rise above the darkest moments of
Alzheimer’s.
“I can do
all things through Christ who strengthens me.”
Philippians 4:13
ABOUT
ALZHEIMER’S…
It is human nature to want to conceal any lapses of
memory. Dad is reacting to the maze of
cobwebs that is slowly descending on his mind by fitting the little facts that
he can still sort out into scenarios that make sense to him and bring him a
feeling of security. Story-telling or
memory fabrication becomes a permanent part of his coping mechanism and he will
eventually forget that he has forgotten.
The stories became part of his reality and it is those stories that he
can repeat over and over.
Dad will move beyond the small lapses in judgment and
recognition to a fervent belief that there is nothing wrong with his ability to
remember. He cannot understand or accept
that his reasoning is faulty and his thinking is unsound. By this stage, choices in behavior are out of
his control.
Alzheimer’s Disease damages the brain over a period of
many years and gradually makes it impossible for the individual to separate
fact from fiction. Under these
circumstances, Dad’s strange reactions to an ever-shifting horizon are understandable. Inventing memories, telling stories, and
other coping mechanisms provide him with an emotional safety net.
CAREGIVING TIPS…
Mom is fighting the ever increasing difficulty of
remembering where she was this morning and where she is supposed to be this
afternoon. In the early stages of
Alzheimer’s she knows something is wrong.
Gently encourage her to express her feelings and talk out the emotions
she is experiencing. Give her freedom to
be frustrated with herself without adding to her frustration by laying blame or
pointing out her shortcomings.
As Mom’s reality changes and she lives in a different
world than the rest of us, the compassionate caregiver will travel into her
world because Mom is quite unable to return to reality. When she insists that she must find the
backpacks and sleeping bags because her granddaughter is taking her on a
camping trip, offer to sit down with her over a treat and to tell you about her
granddaughter and where they like to camp.
Mom will feel honored that you want to hear about it and may soon forget
the search for the backpack. Maintaining
Mom’s dignity gives her a sense of belonging and importance. You will have met her in her own reality and
justified her actions and feelings.
As the small fibs turn into larger stories, react
positively to Mom’s tales, no matter how outlandish or far-fetched they may
seem. Acknowledge that you have heard
her without being judgmental in nature.
When the story-telling is harmless, let it roll off your
back. It really does not matter that Mom
believes the postal carrier opens and takes all the free samples of soap and
body lotion. However, be prepared to
step in if Mom’s accusations take her out to the sidewalk to bodily threaten
the carrier.
Sometimes the stories may take on an accusatory
tone. Upon misplacing her favorite
blouse, Mom may accuse you of having stolen it.
Even when you know you have been falsely accused, take the blame and
promise to return the blouse after you have washed it – and then find the
blouse while Mom is sleeping!
Remember that her accusations are not lobbed at you
intentionally. She is just trying to
find a reasonable explanation for why her blouse has gone missing, never
dreaming that she had hidden it away herself.
STAYING POSITIVE …
When Dad gets out of bed and dons a suit and tie, and
picking up a dusty briefcase from beneath his equally dusty desk, heads out the
door to catch the bus to work, he is not simply living in the wrong decade, but
he is communicating a need. Rather than
chastising him or confronting him with the fact that he retired fifteen years
ago, try to look at his behavior from his perspective. He may be expressing a need to feel
productive – to be about the business of providing for his family. Meet his odd behavior with a positive
approach and invite him to help you clean up and organize his desk.
With careful observation and a little creativity, you can
meet Dad’s emotional needs and find ways to help him feel that he is
contributing to family life. A positive
reinforcement of events and people that are still in his memory bank will give
him a much-needed feeling of purpose and accomplishment. He may soon forget the urge to get dressed
and go to work, but the feeling of acceptance will make a lasting impression.
(Read “Improving Alzheimer’s and Dementia Care: Truthsand Lies I told My Father” for more ideas on meeting caregiver challenges with
a positive attitude.)
TREAT YOURSELF…
Set aside your
bedroom as a Parent-Free Zone. Remember
forbidding your parents to enter your room when you were a teenager? Of course, that edict carried no weight when
you were ten, but now you can put a lock on your door and create a sanctuary
for yourself.
Make plans to redecorate your room from top to
bottom. Fill it with all your favorite
colors, textures, appointments and conveniences. Put in a frig with beverages and treats. Subscribe to your favorite publications and
fill a bookcase with books you love.
Hang draperies and dress up the bed with linens that reflect your
personality. Add a comfortable chair and
sit back and enjoy your private oasis!
Gentle Reminder: Everyone needs a
place of sanctuary in which to feel secure and contented.
IN THE NEWS…
Researchers Develop Blood Test to Diagnosis Alzheimer’s
(Yahoo News; July 31, 2013)
Dementia Tops Cancer and Heart Disease in Costs (NBC News;
Apr 3, 2013)
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