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[The
material on this page was current when it was first posted.
Note that in 2003 the Alzheimer Wandering Registry was
renamed Safely Home™ -- Alzheimer Wandering Registry.]
[From
the 1995 Alzheimer Society of Canada Annual Report]
The
Mitchell Family Story
My
Dad -- by Craig Mitchell
Some
people think my father is funny. Some people think that
he is stupid, and some people think that he is just a
nuisance. But, he is my dad. My dad is 44 years old.
He looks healthy, but he has a disease called Alzheimer's disease and his brain cells are dying. Most people with
this disease are old enough to be a grandparent but people
in their 30s are now being diagnosed with Alzheimer's.
Dad's
personality has changed. He does strange things now that
he would never do when he was well. He doesn't spend
time with me anymore. He doesn't play catch, or read
books, or even make decisions anymore. I have to ask
my mom for everything.
Dad
doesn't remember things like he used to. He doesn't remember
when I was born, when he got married and he doesn't even
remember what he did yesterday. He gets his words mixed
up and uses them in the wrong places.
My
father is getting worse and some day I know that he will
need more care. Some day he will not even know who I
am.
It
makes me angry and hurts when people make fun of him.
I get angry at him too, but he is still my dad.
Our
family
Steve
and Sylvia Mitchell met 20 years ago in high school.
Falling in love, they courted their way through the last
two years of school and then married, as Sylvia says, "for
life."
They
settled in rural Nova Scotia, in the small town of Kingston.
Here, everyone knows your name and where you were born.
Sylvia and Steve fit in well, spending many hours socializing
and volunteering time with friends at their local church.
Soon
after their first anniversary, Sylvia and Steve began
planning for a family. The first to arrive was a boy,
Ryan, now 19. Then two years later, on Christmas day,
Joseph was born. Next in line were two girls, Katie,
now 16, and Susan, 14. Two boys followed -- Craig now
11 and James the youngest at nine.
Over
the years the Mitchells' lives revolved around their
children. Hours were spent in the family station wagon,
taking the children to music or sport lessons. Steve
spent cold, early mornings at the local hockey arena
and evenings pitching baseball.
Winters
were spent playing board games or bundling up to go tobogganing
at the local hill. "With six kids there was never
any money for vacations," says Sylvia. "So
summers were spent in day trips to the beach or the lake
for a picnic. We lived life for the kids."
Now
at 42, Syliva's life is very different. A few years ago,
Steve started having problems with his job. As a tax
adjuster for the provincial government, Steve conducted
tax assessments for homes in their community. Complaints
began to surface about inappropriate comments and repeated
questions. Eventually, his reports contained inaccuracies
and missing pieces. He tried returning to conduct second
interviews, but several families became upset. He was
also having trouble outside his job. Sylvia remembers
a Saturday morning when she reminded Steve of an appointment
to get the car serviced at the local garage. "It
wasn't just that he didn't remember the appointment," she
recalls. "He couldn't remember what garage or which
of our two cars needed repair."
In
an attempt to fix the problems in his life. Steve took
some time off. When the situation didn't improve, his
supervisor arranged for him to see a psychiatrist.
Eventually,
Steve's doctor set up a series of tests which confirmed
their suspicions. Steve had Alzheimer's disease. By this
time, the Mitchells' world had already changed. Steve
insisted on driving the children to their practices,
but was making dangerous judgment errors. He finally
had his license revoked, but only after many frightening
days and sleepless nights. Steve's personality also changed.
He started hanging around the mall, eating excessive
amounts of candy and making inappropriate conversation
with neighbours. Consequently, he was brought home by
the police for a variety of indiscretions and then barred
from the mall unless accompanied by another adult. He
was becoming a stranger, an embarrassment to the Mitchell
children. As they grew through their teenage years, each
child would have different reactions to their father.
One of the girls, who had idolized her father, pretended
not to know Steve when she heard kids making fun as they
watched him from the classroom.
Ryan
would challenge a couple of men he overheard talking
negatively about his dad. Craig was inspired to write
the essay we feature on page one.
In
this annual report, we will follow Sylvia, Steve and
their six children, looking at how their lives have changed
since the onset of Steve's disease. We will explore how
the Alzheimer Society can offer some peace of mind and
support as families face the devastation of Alzheimer's disease.
Making
it happen
Craig
Mitchell knows too well the need for more understanding
and awareness of Alzheimer's disease. He faces this challenge
every day in his school, on the bus, at baseball practice
and music lessons.
In
Craig's experience, he finds 11-year-olds make fun of
what they don't understand. So days on the bus without
the help of friends or family are difficult, so much
so, that Craig addressed the need in an essay, featured
on page one of our report. When Craig presented the essay
to his schoolmates, they were sorry for making fun of
his dad.
Through
our awareness publications, we hope to provide more children
and parents with the information to stop Alzheimer jokes,
and help people understand the true meaning of Alzheimer's disease.
No
clearer was this than in our January Awareness Program,
which featured the need for a nationwide Alzheimer Wandering
Registry. Working with the Support Services and Education
department and our local organizations, we interviewed
families and care facilities providing real life situations
for the media. The story was a huge success, marked with
hundreds of media calls and national public attention!
The
result was very positive for the Society and thousands
of Alzheimer families. Government funding to implement
the program was granted shortly after -- showing us once
again that working together can make it happen. As Craig
can attest, the benefits of awareness are tremendous
for all families and individuals living with Alzheimer's disease. Greater understanding will alleviate many of
today's challenges and help us find tomorrow's answers.
Facing
today's challenges
"The
children have always been taught respect, but now they
find it hard to respect their father. The children will
stand up to Steve and will come to me before they do
what he says...I regret they don't have a dad who is
a good example to them anymore. He has had a major personality
change and is not the person he once was," says
Sylvia.
Imagine
having your father replaced by a stranger. The way he
made you laugh and kissed you when you cried. His maybe
answer that always meant yes. The tears in his eyes when
you disappointed him. All that you loved and hated about
your dad, lost to Alzheimer's disease.
Then,
imagine losing your husband at middle age. Gone is the
soft touch of his hand, his warm embrace after a difficult
day, shared smiles over your child's accomplishments,
all replaced with vacant stares and embarrassing behaviours.
These
relationship changes are very emotional, placing tremendous
stress on the whole family. Yet, it is estimated that
a majority of persons with Alzheimer's disease live in
the community and like Steve, are being cared for by
their family.
To
understand the caregiver experience and the subsequent
impact the disease has on the family unit, Dr. Hazel
MacRae, a Nova Scotia researcher, is interviewing a number
of Alzheimer families. While home care assistance is
established to help alleviate the physically demanding
needs of providing care, Hazel is reviewing the emotional
impact and the role of individual caregivers. Her work
is one of many excellent research projects funded by
Alzheimer Canada.
In
the Mitchell household, Sylvia finds herself and the
children attempting to hide Steve's inappropriate behaviours
and speaking for him to avoid embarrassing conduct. While
this is common for an Alzheimer caregiver, in essence
they are pretending that Steve is okay and thus protecting
him.
Hazel
is exploring the loss of identity in the person with
Alzheimer's disease and the care providers. By interviewing
family members, she is learning about individual caregiver
stress and the implications and the whole family.
In
the end, Hazel's research will provide Alzheimer Canada
with a better understanding of the impact this disease
has on all family members. As a support organization,
we hope this information will improve and supplement
existing resources that deal with issues children and
adults face, offering necessary support to all care providers.
To
maximize these research efforts, we began our United
Research Program in 1995.
Provincial
and local organizations contributed significant financial
resources to the program by funding for valuable research
projects like Dr. Julian Kanfer's, in Manitoba. While
his research into therapeutic interventions for the triggering
of Alzheimer's disease ranked highly, financial limitations
prevented its funding. Through the new Unified Research
Program, Alzheimer Manitoba is funding Julian's $100,000
Research Grant.
Eventually,
we will find the answers; partnerships like these will
make them possible much sooner, providing some comfort
for the Mitchells and thousands of other families who
are facing today's challenges.
Overcoming
the obstacles
"The
police need to understand this disease," says Sylvia.
Steve has been picked up numerous times by the police,
because of complaints. As a result of the disease, Steve's
behaviour can be inappropriate. He may ride his bike
in the middle of the highway, he may take candy from
the store without paying for it or he may ask someone
on the street for money, even to the point of stopping
moving traffic to do so.
Steve
is still very active and physically fit at his young
age and he likes to spend time away from the house. For
Sylvia, this means worry and stress, as well as a desperate
need for community support and understanding. This year,
with the announcement of the nationwide Alzheimer Wandering
Registry, Sylvia's needs began to be met. Families concerned
about having their Alzheimer loved one wander can register
information about that person on a national RCMP database.
This information is accessible to police across the country,
to identify or locate someone with Alzheimer's disease
if they are reported missing. Police training and public
education are essential to the program.
"We
need to know police understand behaviour like Steve's,
so they can deal with the challenges and treat families
with care and support," says Linda LeDuc, Director
of Support Services and Education.
For
Sylvia, the program alleviates her fear that if Steve
hitch-hikes to another city or county, the police in
that area can access his information. They can then assist
in his safe and timely return.
Before
the program began, information could only be obtained
through local Alzheimer registries, which wouldn't help
if individuals like Steve wandered outside their community
police district.
Sergeant
Tim Cane, of the Fredericton, New Brunswick police force
is a member of the Wandering Registry Committee and has
presented the training program to many officers. Tim
says, "The program is an extremely valuable tool
that serves to make a wandering episode less stressful
for both the family and the officer."
The
registry resulted in a series of partnership between
Alzheimer Canada and many groups including The Senior
Independence Program of Health Canada, Block Parent and
the Royal Canadian Mounted Police.
And
our support programs didn't stop there. Assisting families
and other care providers, we distributed almost 300,000
pieces of educational material in 1995.
To
aid families with daily activities like bathing, decisions
regarding drug trials or understanding breakthroughs
in genetics, we worked with experts in the research community
to develop support material. This information can provide
understanding and alleviate fears in families like the
Mitchells who face Alzheimer challenges every day. Partnerships
with groups like the Canadian Association for Community
Care (formerly Home Support Canada) also continued with
the evaluation of our new training resource, Alzheimer's Disease: Care at Home. Supported by the Max Bell Foundation,
we reviewed the effects of the video training program,
entitled Making a Difference: Understanding the Impact
of Alzheimer Disease: Care at Home. The evaluation
confirmed that the program had a positive effect on home
care workers entering the Alzheimer home. Now, care providers
can understand the needs and demands of these unique
families and how to approach difficult and challenging
situations.
As
a result, the videos are used and valued in the caregiving
community, and quality of life is improved for everyone.
We strive to continue our positive impact on Alzheimer
families, as we work together to overcome the obstacles.
Back
to the Feature Stories introduction page.
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