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