Assessing my Readiness for VSED
By Jean Rough April 26, 2019
Dear Friends and Health care Providers …
Jim is helping me write this …. As you probably know I’m suffering from Alzheimer’s
Disease plus Lewy Body Dementia. These diseases are terminal and undermine my
consciousness every day. There are lots of ups and downs. But I’m afraid for what lies
in store.
Months ago Jim and I became aware of VSED as an option (Voluntary Stopping Eating
and Drinking). After learning about it, I realized that this is exactly what happened with
my father. My 94 year old father was eligible for “Death with Dignity.” But he preferred
to just stop eating and drinking with the help of Hospice. There was no name for it
then. My sister Carol Ann and I helped as well. And at the moment he died, both of us
exclaimed to each another “That’s how I want to do it.”
Our dad’s choice wasn’t because he was experiencing a relentless loss of
consciousness. He just was ready to end his life at 94. I’m younger but I must act
before it’s too late. My question is “when?” … In the last month or so I chose to start
VSED on June 15, 2019.
Most friends who hear about this choice are generally supportive. But to them it seems
like it’s too soon. However, as Jim and I live day to day with these diseases, there are
many indicators that the time has come.
Watching the movie "Still Alice" the first important image for us to understand our
situation. As Jim and I talk about it, there were three Alice’s. Alice #1, the college
professor before the diagnosis of Alzheimer’s Disease. Alice #2, the same person with
the disease yet still conscious. And Alice #3 is the demented version who can’t act
autonomously. The movie describes a similar struggle to what we are working on.
I as Jean #2 … I want to live as long as I can. But I can’t wait so long that Jean #3
takes over. That’s what happened in the movie. And so Alice failed and didn’t know she
lost that opportunity. So far June 15 looks good.
Jim and I have been assessing the state of my lost consciousness and capabilities.
Recently we have prepared this letter to be shared with people to our situation.
Some indicators:
a) Generally I can't engage in a normal conversation, especially with people
discussing ideas. I can't track what people are saying. It’s best when someone
knows about my condition and speaks directly to me. But even then I miss a lot.April 26, 2019
So, when we meet a new Airbnb guest to our house, for instance, I can’t
understand them when they say where they’re from or what their interests are.
When I start presenting our home to them, even then I get stuck not finding words.
b) I often can't remember the names of people close to me. Or sometimes their
faces. I have to ask Jim even though they may be people I know.
c) I have difficulty with daily activities like managing the clock or calendar or
computer. When given a time, for instance, I usually can’t draw the face of a clock
and put the hands in the right positions.
d) Jim and I talk about my having "potholes" in my consciousness. One pivotal
example was about six months ago when we were in the city of Montreal, we
realized that I couldn’t remember where I was or say the name “Montreal.” Even
when I was just told the name, I couldn’t do it. This discovery has been very
difficult for both of us. Comes and goes.
.
e) I’ve been struggling with simple arithmetic. I can’t make a small purchase at our
local store without the help of the sales clerk to get the proper change.
f) Sometimes I get stuck in a thinking loop. A month ago with a group of people I
became convinced that my skirt was in the wrong position and anxiously worked on
it for a long time. It was OK but later this episode indicated to me how easy it is to
loose consciousness with no control.
g) Lately I’m discovering that I cannot watch a TV show and understand. While
watching Grey’s Anatomy recently I expressed to Jim, “I can’t follow any of it.”
h) Both reading and writing have become difficult for me. In trying to edit this letter I
sometimes stop completely, unable to write. At the moment my right hand is
fluttering from the tremors caused by Lewy Body dementia.
i) Temporary losses of consciousness. There have been moments when I’ve
forgotten my name. Or Jim’s name. Or how old I am. Or gotten lost a few blocks
away. Or just stopped, unable to act. These are scary instances for both of us.
As my diseases worsen I worry that I’ll have an increasingly negative impact on others.
I am especially concerned about my caregivers, relatives, and close friends, …and of
course for Jim. Thank you for reading this. I hope it helps you understand the timing of
my choice. Please support me in being careful with this information.
Thanks again,
Jean Rough (with Jim helping)
Dear Friends and Health care Providers …
Jim is helping me write this …. As you probably know I’m suffering from Alzheimer’s
Disease plus Lewy Body Dementia. These diseases are terminal and undermine my
consciousness every day. There are lots of ups and downs. But I’m afraid for what lies
in store.
Months ago Jim and I became aware of VSED as an option (Voluntary Stopping Eating
and Drinking). After learning about it, I realized that this is exactly what happened with
my father. My 94 year old father was eligible for “Death with Dignity.” But he preferred
to just stop eating and drinking with the help of Hospice. There was no name for it
then. My sister Carol Ann and I helped as well. And at the moment he died, both of us
exclaimed to each another “That’s how I want to do it.”
Our dad’s choice wasn’t because he was experiencing a relentless loss of
consciousness. He just was ready to end his life at 94. I’m younger but I must act
before it’s too late. My question is “when?” … In the last month or so I chose to start
VSED on June 15, 2019.
Most friends who hear about this choice are generally supportive. But to them it seems
like it’s too soon. However, as Jim and I live day to day with these diseases, there are
many indicators that the time has come.
Watching the movie "Still Alice" the first important image for us to understand our
situation. As Jim and I talk about it, there were three Alice’s. Alice #1, the college
professor before the diagnosis of Alzheimer’s Disease. Alice #2, the same person with
the disease yet still conscious. And Alice #3 is the demented version who can’t act
autonomously. The movie describes a similar struggle to what we are working on.
I as Jean #2 … I want to live as long as I can. But I can’t wait so long that Jean #3
takes over. That’s what happened in the movie. And so Alice failed and didn’t know she
lost that opportunity. So far June 15 looks good.
Jim and I have been assessing the state of my lost consciousness and capabilities.
Recently we have prepared this letter to be shared with people to our situation.
Some indicators:
a) Generally I can't engage in a normal conversation, especially with people
discussing ideas. I can't track what people are saying. It’s best when someone
knows about my condition and speaks directly to me. But even then I miss a lot.April 26, 2019
So, when we meet a new Airbnb guest to our house, for instance, I can’t
understand them when they say where they’re from or what their interests are.
When I start presenting our home to them, even then I get stuck not finding words.
b) I often can't remember the names of people close to me. Or sometimes their
faces. I have to ask Jim even though they may be people I know.
c) I have difficulty with daily activities like managing the clock or calendar or
computer. When given a time, for instance, I usually can’t draw the face of a clock
and put the hands in the right positions.
d) Jim and I talk about my having "potholes" in my consciousness. One pivotal
example was about six months ago when we were in the city of Montreal, we
realized that I couldn’t remember where I was or say the name “Montreal.” Even
when I was just told the name, I couldn’t do it. This discovery has been very
difficult for both of us. Comes and goes.
.
e) I’ve been struggling with simple arithmetic. I can’t make a small purchase at our
local store without the help of the sales clerk to get the proper change.
f) Sometimes I get stuck in a thinking loop. A month ago with a group of people I
became convinced that my skirt was in the wrong position and anxiously worked on
it for a long time. It was OK but later this episode indicated to me how easy it is to
loose consciousness with no control.
g) Lately I’m discovering that I cannot watch a TV show and understand. While
watching Grey’s Anatomy recently I expressed to Jim, “I can’t follow any of it.”
h) Both reading and writing have become difficult for me. In trying to edit this letter I
sometimes stop completely, unable to write. At the moment my right hand is
fluttering from the tremors caused by Lewy Body dementia.
i) Temporary losses of consciousness. There have been moments when I’ve
forgotten my name. Or Jim’s name. Or how old I am. Or gotten lost a few blocks
away. Or just stopped, unable to act. These are scary instances for both of us.
As my diseases worsen I worry that I’ll have an increasingly negative impact on others.
I am especially concerned about my caregivers, relatives, and close friends, …and of
course for Jim. Thank you for reading this. I hope it helps you understand the timing of
my choice. Please support me in being careful with this information.
Thanks again,
Jean Rough (with Jim helping)