Wednesday, August 4, 2021

my story #97-the smile is gone

 
MY STORY #97-THE SMILE IS GONE

when i was looking at the date for my interview that will be next monday august 9th
see link below for more info
i realized that my younger brother died on august 8th 8 years ago
its hard to believe its been that long

i have been thinking of him all week

when he was diagnosed about 7 years before he died in the final stages of alzheimers he was much further along than when i was diagnosed
i realize that had my drug aduhelm (aducanumab) been available for use when he was diagnosed that he may have been too far along in the disease process to qualify for being treated with this drug

this drug if it works will have to be given early in the disease process
maybe for it to really work it may have to be given even before symptoms start

when he was diagnosed my mother was headed into the final stages of alzheimers disease
i was soon to follow in about 5 years with my diagnosis
my mother died a couple years after he was diagnosed

this morning as i was writing this i realized that we have had someone in our immediate family with a diagnosis of alzheimers disease for over 20 years

its a nasty persistent disease leaving death and sorrow in its wake

i wrote this blog below a few days after his death
i remember crying as i wrote it
wiping the tears off my eyes and my computer keyboard

my younger brother a year younger than me was the mirror i looked at and could see myself sometime in the future
_________
08-12-2013

THE SMILE...

his smile and his blue eyes his quietness his willing to help
his love for his family his service to the community 
all ended this last week

he is the face of alzheimers disease
he a father husband and grandfather with friends and family 
that loved him

it took him away from all of us last week
that terrible disease that robs a persons brain and takes
over 
and causes a downward decline that can not be stopped
no matter what you do once it starts

thats what happened to my younger brother last week
that awful disease took him

it bothers me a lot because he died and it really bothers me
a lot that the alzheimers disease took him away from us 
when he was so young
i thought this was an old persons disease

he was in the prime of his life when it started 7 years ago
im sure that he noticed things a long time before others 
began to notice
ive talked and communicated with others who are diagnosed with
the disease real early and yes they notice things are changing
a long time before others notice

its the cruelty of this disease when you know

of course since our mother died from the disease he im sure 
as we all do worried that he was next and he was

this also bothers me a lot 
his death and seeing what his wife and kids and grandkids had 
to go through during this period of time 
i also know that if my diagnosis is correct that my path
will be the same as his
im glad that i know though that this is a possibility so i can plan 
and hopefully my family can be as good as his family was throughout
this whole ordeal

his wife should be given the caregiver of the year award by someone
i know we all give her our vote
as she suffered through this ordeal 
the financial and emotional devastation that it caused
she was there
he always knew that she was there
she was there to the end

he died in the hospice house surrounded by his wife
his girls and his grandkids his friends and family 

may he rest in peace and may his family rest now in peace

his visitation the night before had a 2 1/2 hour line waiting to see 
the family 
a tribute to how well liked he was 
this silent guy with the blue eyes and that smile that so many 
people commented on 

the salute by the fire department 
the sounding of the final bells
the tribute of the sheriffs department
the presentation to his wife of the flag

the excellent funeral service by his minister who knew him 
as he told stories about my brother
the songs sung by a young man
who at one point had to pause as he teared up
a building packed to capacity to honor him
my younger brother 

yes may he rest in peace
ive shed my tears many times this last week
but ive smiled a lot 
like he use to
as i remember the things we use to do together when we 
were young
some mischievous some not
well most were probably mischievous

ill remember your last visit to our house when we had a lot
of time together 
the alzheimers had its hold on you then 
you know as the words wouldnt come out right 
and as you said you couldnt remember things 

then our family reunion last month
when your wife that courageous dedicated wife brought you
there in that wheelchair bed
you were in there somewhere 
we were and all are glad that she made the effort to have you there
surrounded by all the noise and happiness
somewhere inside i think you knew you were there and enjoyed it

i cherish the visits i had with you that weekend
you didnt talk back but i talked to you anyway
i think you knew i was there

im glad now that you are at peace
and your family 

yes the mirror in which i look at is gone

rip 
we will all miss you


a time on november 2 when all his family and friends will gather again 
to honor him 
and to give support to the fight against this terrible disease that 
took him so young
__________ 
this monday august 9, 2021 at 1200 pst i will be interviewed online by the website being patient a well known alzheimers website
my interview will be a zoom interview

before i start that interview i will pause a silent moment to memorialize my younger brother who fought alzheimers for 7 years
like all who get the diagnosis the disease wins in the end
it won against him it won against my mother and it will win against me

here is the link to my interview to watch it live
being patient reserve link for my interview

when you sign up for this rsvp interview you will be sent a link to the interview and there is also a link to youtube to watch it later at your leisure

you can also submit questions during the interview

fyi i have been signed up for the being patient newsletter for several years and regularly listen to their interviews
 it is a great resource for those of you now in the alzheimers world

keep those of us with this diagnosis and their caregivers and their family in your hearts and minds

the organicgreen doctor

2 comments:

  1. Not many days go by that he isn't brought to mind! I thought of him today and how Chance used to stay with him a lot! They were two peas in a pod for sure!

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  2. i too think of him almost everyday. togd

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