It's been a dark summer for me: Mom passed away from
Alzheimer's on July 2nd at age 77 in my hometown of Roscoe, NY, a small village
about 150 miles northwest of NYC. Mom lived in the house that my grandfather
saw built for his family back in the late 1920's. It was special to have spent
my kid years playing in the same woods, climbing the same trees, and playing in
the same streams nearby that my Dad did some decades earlier. It was a simple,
innocent time for us in the country and Mom was the center of it all. I'm not
sure that I've completely processed that she's gone, truthfully. Though I
haven't spent a great of time dwelling on her death there are times, like
writing this Spotlight post, that have forced me to sit down to reflect upon
the past few years. So, yes, I feel the pain surface once again when thinking
about Mom but maybe writing about this will be of some help to others that are
witnessing their loved ones struggle with this disease.
Mom began to lose her memory many years ago and I was
concerned about it before anyone else in my family. Mom could be stubborn so
she never once openly admitted to us about her memory loss and perhaps she
never became fully aware that she was suffering with dementia. In late 2010 she
increasingly viewed my Dad as a stranger in the house. I'd occasionally get
these odd, distressed phone calls from her where she would say things like
"there's an awful, mean man here" and 'why doesn't he just leave and
go back to where he came from?" My dad was a quiet man but I'm certain
that her growing coldness and odd behavior was devastating to him. My sister,
Mary, had the grace to give up her life in New Mexico to move back to my
parent's house so she could help Dad cope with what we all now knew was
dementia (likely Alzheimer's). My Dad was elderly and, after suffering from a
brief but serious illness, died in early 2011, leaving Mary to assume the role
as Mom's full-time caretaker for the next 21 months. Mom was still able to do
basic personal care for herself at the house but her abilities to accomplish
common tasks slowly diminished. Her once vibrant interests waned during that
time: she no longer read books, she lost interest in her oil paintings, and she
was no longer active with her church and local garden club. Mom had long
ago began an oil painting of her cherished home in Cooks Falls but she was
unable to finish it. She continued to call me in Brooklyn telling me,
"I need to go home now, Dad is going to wonder where I am" referring
to her father and childhood home in Cooksfalls, NY. Her closest companion was
her fluffy little dog, Zoe, who occupied my Mom's thoughts and time. Mom would
do quirky things, such as roll up the dog food into little balls before feeding
them to Zoe. As the months passed her beloved, elderly Zoe became frail and ill
and passed away. It was a traumatic and sad experience for Mom who became
increasingly embittered and angry toward Mary, who herself was completely
stressed out enduring my mom's unpredictable wrath. We had all consulted with
an elder care lawyer many months prior to this time and Mom had signed the
proper documents to allow us to act as her legal guardian and make the hard
choices that were coming. By early 2012 Mom's decline advanced to the point
that my sisters, brother, and I agreed it was right time to move her to the
local nursing home for proper, full time care. Mom had worked at this nursing
home for over 15 years back in the 1970's to the early 1990's so it was a good
thing that it was still a familiar place to her (old memories) and that
lessened the stress of the transition. There were some women still on staff
that had worked with mom those many years ago so she had some friends to watch
after her and reminisce about the good old days. But, it wasn't a smooth time
for Mom: her appetite began to significantly wane and her nutrition became a
constant concern. During her 5th month at the nursing home Mom fell in one of
the hallways and broke her leg. The stress and confusion became too much and
her situation became dire: she seemed at some point to forgot how to eat and
drink. Mom's living will stated that, under such circumstances, she did not
want medical intervention to prolong her life, so there would be no feeding
tube. Mom eventually lost consciousness and survived for 10 more days without
food and water. It was an agonizing experience but Mom received full hospice
care treatment which included regular doses of morphine to keep her sedated and
pain free.
I'm hopeful that some medical advances will eventually
lessen the impact of Alzheimer's but even if the disease proves to be too
complex to fully cure I know that the Alzheimer's Association provides wonderful
knowledge and support at no cost to all in need. I used the Alzheimer's
Association's hotline a number of times in the early years of Mom's decline and
the information & support I received was truly wonderful.
Looking back there have also been some bright
experiences this summer for me: I've joined the ATEA team in the spirit of
embracing life to the fullest and will proudly run the 2013 NYC Marathon in my
mom's honor. I feel deeply honored to have the privilege to train with these
incredible, compassionate souls on our team and hope that my presence will help
out in some small way to make a difference.
To all those who are now witnessing loved ones
struggle with this disease, I honor you and your commitment to be there for
them when they need you most. Please understand, though, that it's OK to admit
that the challenge of care taking has become too much for you and that it's OK
for you the let go to allow others to take over. Never forget that your life
and well-being are most important, so please take care of yourself.
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