Time of Death

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alligator

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Joined
Feb 11, 2016
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18
Reason
CALS
Diagnosis
09/2010
Country
US
State
TX-Texas
City
san antonio
Dear ALS community,

It has been incredibly hard to describe to family members and friends just how difficult it is to have ALS or caretake for an individual with ALS. Well intention friends and family reference the most famous ALS outlier whom we all know and a ridiculous movie entitled You're not You that romanticizes caretaking (book is better). If you really want to get a more accurate representation of ALS, watch Showtime's Time of Death season one Episode 3. Cheyenne's story is a much better depiction of what ALS does to the body and soul.
 
If anyone asks I just say this is the disease that people use to make the case for doctor assisted death. Both major cases that were argued in the Supreme Court of Canada arguing for assisted suicide involved ALS patients.
Vincent
 
Alligator, I was in a support group meeting this week and this topic came up. No one, unless you are the one responsible, gets the difficulty of providing care. As someone said, she doesnt need a babysitter for her pals, she needs someone to provide care. She said friends come to help but wont help with the toileting issues, wont learn to use the lift, etc.
 
I completely agree. Most people have never even heard the word "hoyer".
 
How we all wish fervently that none of us had ever head the word 'hoyer' sigh ...
 
agreed Tillie.
 
That outlier receives about a million dollars a year of 24 hour a day care...
 
That outlier receives about a million dollars a year of 24 hour a day care...

I'm very confused what this means Gil. Would you mind explaining, what is the outlier and where does that kind of money come from? I feel like I missed something important :)
 
I'm very confused what this means Gil. Would you mind explaining, what is the outlier and where does that kind of money come from? I feel like I missed something important :)

I think she is talking about Stephen Hawking in the original post. I cannot imagine the level of care he receives to maintain his lifestyle and career. I read somewhere it is a 24hour staff of like 12 people or something...
 
Ahhh, Hawking the outlier ...

I thought the OP was talking about someone named Cheyenne.

Have you read the book Travelling to Infinity? It is Jane Hawkings story and somehow they made the hawking movie out of it, but the movie is all about him, the book is about Jane's huge struggles as a CALS.

I don't know what is spent on his care now, but for many years they had no money and Jane was doing it very tough, young and alone. Her story is amazing.
 
yeah, hoyer and bipap. two ALS related objects no one has ever heard of
 
Stephen Hawking is an outlier---not typical of ALS natural progression. Often times people will point to his example and use it a reference for self-comfort and an excuse not to be present. After all, the PALS could live as long as S.H. is the self-talk that goes on in many minds who don't know that he is an outlier.
 
Alligator,
Thank you for your post. I agree, Family and Friends although a blessing to have, will never understand the 24 hour nature of this beast. Even if they come and do an few overnight shifts in a row. They will never understand how the light at the end of the tunnel feels like an oncoming train which may or not arrive in the next 2 months to 10 years. Its an tunnel that will end but who knows when??
 
Not just friends and family understand sometimes Pals don't seem to get it either, for the ones who dont havd FTD. Ppl reference Steven Hawkins but lets not forget he has millions of dollars to continue to live this long he has access to all sorts of care and meds we regular ppl dont. He has no understanding of being financially torn because of this disease or not being able to afford 24hr care. If i had half of the access he has things would be different. Im mot saying in the beginning it may not have been hard but unless we all hit the lottery things will remain hard for us Cals and Pals. JMO
 
I feel the same, family will help, but not do the hard dirty work. I need a weekend away and there is nobody who is willing to stay for the weekend. I need someone who can transfer And toileting. It's been almost 2 years of this without any breaks. I get a few hours 1x a week. It's so hard, esp since we also have 3 very young children . It's like no light at the end of the tunnel as someone said here.
 
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