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A Daughter’s Tale: A Story of Caring
Countering Despair: The Impact of Alzheimer’s Support Groups —
By Amy Lee, Daughter
A lzheimer’s disease was definitely not top of mind for
me a few years ago. And hearing about the topic once in
a while on the news, there was a sense of detachment: no
personal relevance.
Things changed suddenly in January of 2007. My Dad
called from China and said he wanted to move back. He
had gone through some testing in China
for Alzheimer’s, but there was fear and
uncertainty and a lack of options. So
Dad decided to move to New York
City, to live with me, his youngest
daughter.
I took Dad through a maze of
cognitive as well as physical tests and
by March ’07 he was diagnosed with
Alzheimer’s. I was financially and
emotionally unprepared to deal with
my father’s illness and he was not
prepared either. It was very upsetting
to see my proud father struggling
with words and unable to fully care
for himself.
I had to work and there were no
friends or other relatives in NYC to help out. Dad did not
have activities, and he was often alone, feeling depressed
and lonely. He seemingly got worse by the week, with
declining appetite and significant weight loss. At times he
refused to get out of bed. I felt like he was fading before
my eyes and I did not have a game plan. I couldn’t be
home with him all the time to shop and cook. There were
no friends or other relatives in NYC to help out.
In researching Alzheimer’s exhaustively (in the library,
talking to doctors, searching online) it became apparent
that the Alzheimer’s Association, New York City Chapter led in the
field. Yet I hesitated initially to make contact (too busy and
exhausted to even have time to ask for help).
Finally, late one night, I wrote an e-mail in despair to the
Alzheimer’s Association, New York City Chapter. Unlike
dealing with many faceless organizations and the feeling of
being shuffl ed around, I was in touch the next morning with
an amazing social worker, Matt Kudish. Matt understood exactly what we were going through and our dire circumstances.
Within a week, the Alzheimer’s Association allocated two
modest, but very helpful grants to my Dad. One grant
allowed Dad to continue receiving his medications and
supplies without interruption until he enrolled in Medicaid.
The other was a respite grant, so that Dad could visit a 24-hour care facility for a week, enabling
family members to take a break and
regroup.
There was absolutely no red
tape throughout the process. To this
day, Matt is always available to us, a
supremely compassionate person
who provides unconditional steady
solace and support.
The Alzheimer’s Association, New
York City Chapter has an outstanding
array of resources. Through Matt, I
joined a Support Group and attended
several extremely practical and crucial
seminars (Understanding Dementia,
Financial/Legal Planning, Medicaid
Home Care), and was referred to a
legal clinic when Medicaid rejected
his application for care.
Through all the collective support from the Alzheimer’s
Association, our family is able to successfully help my Dad.
Dad is now on Medicaid, which enables him to attend
daycare and have the help of a home aide. He is extremely
happy and stable with consistent mental and physical
activities, at just the speed he needs.
Most recently, Dad was able to attend his granddaughter
Stephanie’s wedding in Boston as well as enjoy a trip to
Canada with my brother David. My sister Wendy visits all
the time from Illinois. From Chicago she has also been able
to consistently receive support from that location’s chapter.
The Alzheimer’s Association helped us at a pivotal point
when things could have turned out extremely negative.
Instead, Dad is doing well living with his condition, and
our family and friends are all able to help appropriately and
lovingly.
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