I will never forget the helpline call I
received several it was several years
ago
and I could still share it with you
verbatim because it had such an impact
on me why because it was the first time
in all my years working at the
Alzheimer’s Association that I ever
received a phone call from someone
actually diagnosed I remember being
nervous answering the call hi I’m Bob
I’m 60 years old I’ve been diagnosed
with Alzheimer’s disease two weeks ago I
surrounded myself with family and
friends because I thought I’d be
depressed and they all left me now so I
thought I should call you I printed
information off from the website about
Alzheimer’s disease and before anyone
sat to visit with me they were
instructed to read all about it I’ve
already put in for a 2-bedroom apartment
because I know I’m going to need help
someday and I put up shelves in my
living room so that I can find my things
so can you please tell me what time and
where the nearest group is for people
diagnosed like myself so I can learn
strategies and I can gain support for
individuals just like me I remember
hanging up the phone feeling defeated
and a failure I had no proof to send Bob
to I had a list of groups for family
members and friends I had a list for
spouses adult children and even
long-distance caregivers but I didn’t
have one for Bob and you know what that
didn’t make sense as an organization and
as a society we’re encouraging people to
get detected early in fact we even had a
program called early know the ten signs
early detection matters well what I
realized what really matters is to
support for the person diagnosed
when I hung up from the phone
I remember feeling nervous because I had
never had experience working with people
newly diagnosed I had twenty years of
experience in a nursing home and I very
seldom had the honor to work with
somebody who could share their story and
I was frightened it was definitely out
of my comfort zone and I remember
knowing the facts five point five point
million people diagnosed with
Alzheimer’s disease it’s a six leading
cause of death and among the top 10
leading causes of death is no treatment
prevention
there’s no way to slow it down so how
then was I going to have a successful
group
I knew the facts here and I knew the
facts here and I was supposed to have a
social engagement program but I
remembered I needed to start that group
and I remember the first group I had
they named themselves gap because they
wanted to give Alzheimer’s purpose and I
remember thinking I have a lot to learn
you see I was expecting to hear about
the sadness the struggles the
frustration sadness I was not prepared
to witness the acceptance the strength
the humor
the passion for life and their need for
purpose if we think about the definition
of stigma from Webster’s dictionary it’s
a negative often unrealistic belief that
people Society has about something and
there is still a stigma surrounding this
disease so I said to my group the real
experts if you can write a slogan on a
t-shirt
to help me help you lessen the stigma
what would it be I have Alzheimer’s and
I’m working on it
I’m allowed to repeat because I can’t
it’s okay to cry and it’s not my fault
there’s slogans of strength when they
shared sometimes it’ll come around and
I’ll grab it when they’re losing their
thoughts and this would my friend who
was a race car driver up in Lime Rock
and he said it’s like this sometimes
there’s a muddy windshield but then the
rain comes and clears
passion for life on their t-shirt they
wanted to say I’m still valuable I am
still here
I’m an and I’m here today there’s many
strategies that we can read in the
textbook I was blessed to hear the
strategies that they shared amongst each
other I will never forget Jerry said to
me Carol I’m starting to lose my words I
know I’m not saying things clearly but
you know what I decided when I talked to
my husband and I know it’s not the right
word but he knows what I mean I’ve
learned to say it’s good enough and I’ll
never forget through a poetry class we
did one of our members of our group has
hallucinations and she said if you’re
frightened by a hallucination if you
look down and your dog lies sleeping you
know you’re okay and I said wow what a
strategy that you’ve taught yourself
I want to share with you excerpts from a
book that Robin Yale talks about the
difference between the care partners
dynamics and those are the person
diagnosed and these are areas where I
think not only as caregivers but as a
community we need to focus on the
present rather than the long-term future
to include rather than exclude to allow
the person rather than takeover to not
forget to pay attention to self-esteem
and purpose bill taught me about purpose
bill goes into stop and shop with his
shopping list or should I say his
honey-do list and he shared this story
with me he said I walked in to stop and
shop and I froze he used the word froze
he said they had rearranged everything
the night before and I had no idea what
to do bill was diagnosed with younger
onset Alzheimer’s disease at the age of
56 and he said I thought for a moment of
going back to my car but I realized my
wife great grace was counting on me to
do the grocery shopping and I didn’t
want to let her down she was still
working full-time and Bill shared that
he felt bad enough that he already lost
his job because of the disease and
shopping had given him purpose so he
didn’t leave he didn’t go out to his car
he remembered that he told his friend
Joe behind the deli counter about his
diagnosis and it went up to Joe and said
Joe can you help me I have no idea where
anything is so Joe helped him find a
couple of items and not only that Joe
introduced him percept to several other
people throughout the store and each one
took bill and he successfully completed
his shopping list why because he wasn’t
afraid to talk about it
I believe as a community and even even
as healthcare professionals we need to
educate and not be afraid to talk about
it I believe that will help us lessen
the stigma to help people live well with
Alzheimer’s disease as long as they can
and to always find purpose so few months
ago Tony called me on helpline
Tony’s 49 diagnosed with younger onset
Alzheimer’s disease had to retire
because of the disease as a registered
hospice nurse and she called me and said
do you have a group and I said yes I do
and I felt so good
answering that helpline call Tony
continues to find purpose by now looking
forward to sitting down with people at
the last days of their hospice journey
and she said you know what what I
practiced nursing I never had time to do
that and now I have that time because
she talked about it so what’s better
than talking about it how could we be
more effective how can we lessen the
stigma of Alzheimer’s disease
well our group we decided to sing about
it Dallas members association partnered
with dr. Maureen Matthews and Beth
styles and we decided to create and
compose and record a song the song is
titled life is beautiful the lyrics of
the song talk about how life has changed
how people don’t know what to say but
that I’m still here I’m alive and I care
it’s called life it’s beautiful not
because the disease is beautiful but
because life is beautiful when we
remember them
[Music]
disguise
[Music]
I used to be
[Music]
when you
[Music]
[Music]
when you
[Music]
it’s my hope that you will always see
the person before the disease that
you’ll remember their love and their
strength it is my hope that you will
join people on this difficult journey of
Alzheimer’s disease to live well and
find purpose I know it’s what bill and
the others in my group have asked for
thank you
[Applause]
received several it was several years
ago
and I could still share it with you
verbatim because it had such an impact
on me why because it was the first time
in all my years working at the
Alzheimer’s Association that I ever
received a phone call from someone
actually diagnosed I remember being
nervous answering the call hi I’m Bob
I’m 60 years old I’ve been diagnosed
with Alzheimer’s disease two weeks ago I
surrounded myself with family and
friends because I thought I’d be
depressed and they all left me now so I
thought I should call you I printed
information off from the website about
Alzheimer’s disease and before anyone
sat to visit with me they were
instructed to read all about it I’ve
already put in for a 2-bedroom apartment
because I know I’m going to need help
someday and I put up shelves in my
living room so that I can find my things
so can you please tell me what time and
where the nearest group is for people
diagnosed like myself so I can learn
strategies and I can gain support for
individuals just like me I remember
hanging up the phone feeling defeated
and a failure I had no proof to send Bob
to I had a list of groups for family
members and friends I had a list for
spouses adult children and even
long-distance caregivers but I didn’t
have one for Bob and you know what that
didn’t make sense as an organization and
as a society we’re encouraging people to
get detected early in fact we even had a
program called early know the ten signs
early detection matters well what I
realized what really matters is to
support for the person diagnosed
when I hung up from the phone
I remember feeling nervous because I had
never had experience working with people
newly diagnosed I had twenty years of
experience in a nursing home and I very
seldom had the honor to work with
somebody who could share their story and
I was frightened it was definitely out
of my comfort zone and I remember
knowing the facts five point five point
million people diagnosed with
Alzheimer’s disease it’s a six leading
cause of death and among the top 10
leading causes of death is no treatment
prevention
there’s no way to slow it down so how
then was I going to have a successful
group
I knew the facts here and I knew the
facts here and I was supposed to have a
social engagement program but I
remembered I needed to start that group
and I remember the first group I had
they named themselves gap because they
wanted to give Alzheimer’s purpose and I
remember thinking I have a lot to learn
you see I was expecting to hear about
the sadness the struggles the
frustration sadness I was not prepared
to witness the acceptance the strength
the humor
the passion for life and their need for
purpose if we think about the definition
of stigma from Webster’s dictionary it’s
a negative often unrealistic belief that
people Society has about something and
there is still a stigma surrounding this
disease so I said to my group the real
experts if you can write a slogan on a
t-shirt
to help me help you lessen the stigma
what would it be I have Alzheimer’s and
I’m working on it
I’m allowed to repeat because I can’t
it’s okay to cry and it’s not my fault
there’s slogans of strength when they
shared sometimes it’ll come around and
I’ll grab it when they’re losing their
thoughts and this would my friend who
was a race car driver up in Lime Rock
and he said it’s like this sometimes
there’s a muddy windshield but then the
rain comes and clears
passion for life on their t-shirt they
wanted to say I’m still valuable I am
still here
I’m an and I’m here today there’s many
strategies that we can read in the
textbook I was blessed to hear the
strategies that they shared amongst each
other I will never forget Jerry said to
me Carol I’m starting to lose my words I
know I’m not saying things clearly but
you know what I decided when I talked to
my husband and I know it’s not the right
word but he knows what I mean I’ve
learned to say it’s good enough and I’ll
never forget through a poetry class we
did one of our members of our group has
hallucinations and she said if you’re
frightened by a hallucination if you
look down and your dog lies sleeping you
know you’re okay and I said wow what a
strategy that you’ve taught yourself
I want to share with you excerpts from a
book that Robin Yale talks about the
difference between the care partners
dynamics and those are the person
diagnosed and these are areas where I
think not only as caregivers but as a
community we need to focus on the
present rather than the long-term future
to include rather than exclude to allow
the person rather than takeover to not
forget to pay attention to self-esteem
and purpose bill taught me about purpose
bill goes into stop and shop with his
shopping list or should I say his
honey-do list and he shared this story
with me he said I walked in to stop and
shop and I froze he used the word froze
he said they had rearranged everything
the night before and I had no idea what
to do bill was diagnosed with younger
onset Alzheimer’s disease at the age of
56 and he said I thought for a moment of
going back to my car but I realized my
wife great grace was counting on me to
do the grocery shopping and I didn’t
want to let her down she was still
working full-time and Bill shared that
he felt bad enough that he already lost
his job because of the disease and
shopping had given him purpose so he
didn’t leave he didn’t go out to his car
he remembered that he told his friend
Joe behind the deli counter about his
diagnosis and it went up to Joe and said
Joe can you help me I have no idea where
anything is so Joe helped him find a
couple of items and not only that Joe
introduced him percept to several other
people throughout the store and each one
took bill and he successfully completed
his shopping list why because he wasn’t
afraid to talk about it
I believe as a community and even even
as healthcare professionals we need to
educate and not be afraid to talk about
it I believe that will help us lessen
the stigma to help people live well with
Alzheimer’s disease as long as they can
and to always find purpose so few months
ago Tony called me on helpline
Tony’s 49 diagnosed with younger onset
Alzheimer’s disease had to retire
because of the disease as a registered
hospice nurse and she called me and said
do you have a group and I said yes I do
and I felt so good
answering that helpline call Tony
continues to find purpose by now looking
forward to sitting down with people at
the last days of their hospice journey
and she said you know what what I
practiced nursing I never had time to do
that and now I have that time because
she talked about it so what’s better
than talking about it how could we be
more effective how can we lessen the
stigma of Alzheimer’s disease
well our group we decided to sing about
it Dallas members association partnered
with dr. Maureen Matthews and Beth
styles and we decided to create and
compose and record a song the song is
titled life is beautiful the lyrics of
the song talk about how life has changed
how people don’t know what to say but
that I’m still here I’m alive and I care
it’s called life it’s beautiful not
because the disease is beautiful but
because life is beautiful when we
remember them
[Music]
disguise
[Music]
I used to be
[Music]
when you
[Music]
[Music]
when you
[Music]
it’s my hope that you will always see
the person before the disease that
you’ll remember their love and their
strength it is my hope that you will
join people on this difficult journey of
Alzheimer’s disease to live well and
find purpose I know it’s what bill and
the others in my group have asked for
thank you
[Applause]
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