Clinton News Record, 2016-01-20, Page 9Diagnosis change. . .the new normal
An Alzheimer's caregiver
shares her story
Lynda Hillman-Rapley
Lakeshore Advance
Change can be a dark place to be
when you have raised your family,
retired from a successful career and
fantasize of the promise of leisurely
days and the fulfillment of long -
held dreams. But sometimes, more
often than we can fathom, life takes
a quick turn.
This story begins in 2011 with
small signals, then a fall and new
medications and then in 2014 the
diagnosis, yes dementia was
inevitable.
And now a year later, one Lamb -
ton Shores woman wants others to
know what life is like when your
mate of forty seven years has Alzhei-
mer's disease. She does not want to
be publicly identified, and that is
okay because her story could have
been written by countless numbers
of caregivers living a life they did
not sign on for.
"This is a journey...a marathon,
not a sprint she says adding, "It is
frustrating but I can't imagine being
anywhere else and I promised to be
by this man's side-- until I can't."
A diagnosis of dementia affects
families and friends as well as the
person with the disease. Dementia is
an overall term for a set of symptoms
that are caused by disorders affecting
the brain. Symptoms may include
memory loss and difficulties with
thinking, problem -solving or lan-
guage, severe enough to reduce a per-
son's ability to perform everyday
activities. A person with dementia
may also experience changes in mood
or behaviour. Dementia is progres-
sive, which means the symptoms will
gradually get worse as more brain
cells become damaged and eventu-
ally die. The most common form of
dementia, Alzheimer's disease is irre-
versible and destroys brain cells,
causing thinking ability and memory
to deteriorate. Alzheimer's disease is
not a normal part of ageing. Dr. Alois
Alzheimer first identified the disease
in 1906. He described the two hall-
marks of the disease: "plaques," which
are numerous tiny, dense deposits
scattered throughout the brain that
become toxic to brain cells at exces-
sive levels, and "tangles," which inter-
fere with vital processes, eventually
choking off the living cells. When
brain cells degenerate and die, the
brain markedly shrinks in some
regions.
The signs for this woman were sub-
tle. It was after a fall that she noticed
the changes. Her husband would put
his shoes on wrong. Buttoning was
not correct. Hallucinations would
begin, thinking out loud that there are
people in the house, tires slashed. He
even thought the people in the televi-
sion could hear what he was saying.
Routine became the norm, because
that is what works. She says her hus-
band does not like unfamiliar sur-
roundings. He knows the area from
Forest to Grand Bend, but if she
decided to go further to Goderich, he
was not comfortable. She says the
jaunts should be short and early in
the day. "To preserve your sanity, you
follow the routine," she says adding,
"You become a mom to your hus-
band. Alzheimer is like a fog. He can't
follow instructions to do a task and
has no recollection. But, the person
affected with the disease also knows
they are losing control of their life and
the caregiver has to change their
behaviour and attitude to adjust. The
situation is always changing."
Family gatherings changed. Know-
ing names and relationships to those
people are a challenge. Huge groups
begin fine but eventually the chaos or
movement or even people he can't
see peripherally, send her husband to
his room. And, he often asks his wife
of close to five decades, who she is
and why she is in his home. She tells
him her name and gently tells him
they are married and they love each
other.
"Do not challenge the person's
memory," she warns adding you have
to respond to their reality.
This mother, grandmother and
great grandmother grasps that what
was learned last in life is lost first. A
mantra she repeats often is "connect,
not correct."
"If my husband says something
incorrect, you just let it go. You can't
fix it," she says. While the life of the
one affected with this disease
changed, so does that of their car-
egiver. It becomes a life of feeling iso-
lated, she says, you want to withdraw
from society. Normal chores are more
difficult and sleep does not come
easy, but tears do. "The process is
emotionally draining. You can't get
too exhausted to ask for help," she
warns adding it is sad to know what
her husband has lost "but he's still in
there. Focus on what he can do."
She says she is disheartened that
those people, friends in fact, who she
thought would be there for her, have
disappeared. Without her family and
the family support counselor from
Alzheimer Society of Huron County,
Danielle VanWyk, she could not get
through this. VanWyk says when
friends offer to do what they can,
make a list of those people, and then
ask them to stay with her husband for
a few hours or make a meal. This
woman agrees saying there are many
times she does not have the energy to
cook and would love it if someone
would help her out by making a meal.
VanWyk is one of those people who
this woman can count on as this new
journey progresses. She says the sup-
port worker's knowledge and com-
passion are shared with the person
who is affected by the disease as well
as the caregiver.
This courageous caregiver has
never wavered when it comes to
her faith, although going to church
with her husband has become a
slight challenge. She knows she can't
change the passage of time and
asks for the serenity to accept the
things she cannot change. She says
she knows God would not give her a
challenge she can't handle.
CONTINUED > PAGE 10
Wednesday, January 20, 2016 • News Record 9
Lynda Hillman-Rapley
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