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Stolen Years

A local family copes with early-onset dementia with fortitude and love.

Ruthan Brodsky I Contributing Writer

CONTINUED FROM PAGE 1

"It took over a month to get an accurate
diagnosis of my husband's health:' said
Mickey, who kept insisting her husband get
an MRI to reveal the problem.
The situation became aggravated when
Erwin threatened to do bodily harm to him-
self two years ago. Authorities were called
and he was taken to the emergency room at
Botsford Hospital in Farmington Hills.
"They kept him for 24-hour observation,
diagnosed him as being bipolar and medi-
cated him:' Mickey said. "I knew the diagno-
sis was wrong. He never showed exaggerated
mood swings. I wanted him to have an MRI
of his brain to find the brain tumor:'
Botsford didn't keep Erwin because he
was too young for the hospital's geriatric pro-
gram, so he was transferred to the Samaritan
Behavioral Center in Warren. He was placed
in the geriatric ward, but, at age 59, was con-
sidered too young to remain in the program.
"Beaumont Hospital's adult inpatient psy-
chiatric care was the next stop for Erwin:'
Mickey said. "The only problem was that this
was a volunteer program and patients could
sign themselves out at any time. He was
given more medication, but there was still no
improvement.
"I ranted and raved again and this time
they took an MRI of Erwin's brain. The
doctor reported that I was wrong — Erwin
didn't have a brain tumor, but the frontal
lobes of his brain looked like Swiss cheese.
Erwin was diagnosed with Frontotemporal
dementia (FTD)."
In FTD, portions of the brain's frontal and
temporal lobes atrophy. These brain locations
are associated with personality, behavior and
language. It is one of the few dementias that
are seen in people under 65 (mostly in ages
40-64), posing challenges in family, work
and financial areas. An accurate diagnosis is
important to understand the symptoms, plan
for care and select treatment options.

Easy To Misdiagnose

"In the earlier stages, many patients are mis-
diagnosed with a psychiatric disorder," said
Daniel Meknes, M.D., professor and chair
of neurology, Oakland University William
Beaumont School of Medicine. "Depending
on the affected regions, some patients lose
language fluency, while others have dramatic
personality changes and may be socially
inappropriate or emotionally apathetic:'
In one month, the family went to four hos-
pitals before they had an accurate diagnosis.
"But we're among the lucky ones:' Mickey

Erwin Bloomberg

with his wife,

Mickey, who visits

him every day

4111. 1

said. "Some people in our support group
didn't get a diagnosis for over two years:'
Erwin voluntarily signed himself out of the
Beaumont facility. Psychiatric Services at St.
John Macomb-Oakland Hospital in Madison
Heights was willing to take him into their
program until the family found a more per-
manent residence.
"Beaumont gave us a directory of facilities
that would accept Erwin, and my daugh-
ters Audrey and Sara and I started making
calls," Mickey said. "Sara searched for help
using Google and found the Alzheimer's
Association Greater Michigan Chapter in
Southfield. She asked for help and they sent a
social worker to my home to work with us.
"We were surprised to find that most
facilities and programs aren't licensed to
care for patients with early-onset dementia,"
Mickey said. "Erwin was too young to enter
their programs:'
An Alzheimer's Association social worker
listed a few local places equipped to take
Erwin. She also explained the disease so that
Mickey and the girls had a better idea about
what to expect. She provided information
about requirements for financial assistance

and recommended participating in an early-
onset dementia support group.
"The Alzheimer's
Association has many
resources for families so
that taking care of some-
one with dementia is not
so devastating on the fam-
ily:' says Gayle Burstein of
the Detroit chapter. "We
Gayle Burstein know there are very few
programs for early-onset
dementia, and there is no magic pill for the
disease. Families need help; they can't do it
by themselves and, fortunately, we can help:'
Erwin now lives in an assisted living facil-
ity in Farmington Hills; Mickey visits him
every day. She does receive support from
Rabbi Elliot Pachter of Congregation B'nai
Moshe in West Bloomfield.
"I stay in touch with Mickey:' he said.
"Mickey's parents belonged to B'nai Moshe,
and she and Erwin maintained the tradition.
Erwin was in the Men's Club and willing to
do whatever was needed. Both girls had their
bat mitzvahs here and continued their inter-
est in Jewish education. I visit Erwin from

time to time and have short, mostly one-way
conversations with him. It's very sad:'

Adult Children Blog

Audrey Bloomberg, 29, was working for
Hillel in 2012, traveling to different college
campus Hillel programs when her father was
diagnosed with FTD. Some months later, she
decided to move back to Metro Detroit to be
closer to her family and to become active in
the Jewish community.
"This past December, my mom, sister and
I attended a holiday party of our support
group at one of the member's home during
which the adult children separated them-
selves from their parents:' Audrey said.
The lament that "no one their age under-
stands this" repeated itself among the young
adults, ages 20 to 33. The group grew moti-
vated to raise awareness, resulting in a blog
at dementiastuckinbetween.blogspot.com .
"We came up with the title because each
of our families has a parent with a diagnosis
and the other parent is a caregiver; Audrey
said. As adult children, we are stuck in
between being a child and an adult, some-
times taking on the role as caregiver for our
ill parent and other times taking on the role
of adult parent for our healthy parent. In
between, we are trying to live our lives and
establish our careers and families while ful-
filling these roles. We are stuck in between:'
The blog has more than 13,000 page views
and received comments from as far away as
Denmark. Today, Audrey is the events coor-
dinator for the Greater Detroit Chapter of the
Alzheimer's Association.
From Audrey's blog post on Feb. 6, 2014:

"I've done a lot of things the past 2 years that
most people my age have not. I am proud of
that, but at the same time I miss the naivety
that I had ... I miss talking to my dad, watch-
ing Red Wings games with him coaching from
the couch, I miss his constant questions about
my life, I miss his protective nature ..."
"Right now, five of us from the sup-
port group write for the blog," said Sara
Bloomberg, 28, of Birmingham, who works
for the global public relations agency Weber
Shandwick. "Our goal is to have the blog
serve as a resource for others:'
From Sara's blog post, April 13, 2014: "its
this awful beast of a disease progresses, we
continue to see changes in the good man ...
Recently, Dad stopped talking and he barely
smiles. He doesn't know how to do a lot of
things he used to ... As we live with this new
normal it's sometimes hard to remember the
man who he was."

Stolen on page 10

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May 8 • 2014

