Living Will

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slopokahontas

Distinguished member
Joined
Sep 5, 2014
Messages
116
Reason
PALS
Diagnosis
08/2014
Country
US
State
Az
City
Tucson
I've been procrastinating filing out my living will simply because I haven't decided how I feel about a vent. Do I have to make these decisions now? I used to know how I felt, now I'm confused!
 
Think the big questions are: do you have the money for 24/7 care and a caretaker willing to take this on? Have you read the forum entries by Santa Joe and Diane! You can see the two sides to the question. The only problem with delaying is it maybe come more difficult to make your wishes known later.
 
You can always change your mind. I think one of the important things is to have conversations with your health care proxy about your general philosophy regarding these issues. It is not all yes/ no and you can't provide on paper for absolutely every scenario. The more they know the better they can represent you and the more comfortable they will be. If you say yes to a vent now and then decide otherwise you can change wishes. But it is hard- hard to know and hard to face. Maybe you can do it and plan to reassess every x months?
 
I think with the living will you are choosing do you want a vent if you are completely incapacitated. In my experience here, with ALS it doesn't usually go critical overnight. there is time to make decisions and discuss. Also, no matter what you can always change your mind. It would be best to have an open dialog with your caregiver about your wishes. I think most loving caregivers would honor your wishes if you were unable to convey them.

It is a very hard conversation--but necessary.
 
I seem to recall that, if choosing to vent, the key point for a Final Directive would be to discontinue support if you entered the 'locked in' state.
 
Here is my two cents: (keep in mind that my experience may not be relevant to you)
You never know how ALS will develop. It is better to be early than too late.

My dad was slowly losing his ability to move his legs, back, arms, neck etc. In the morning of being sent to ER, he had a good meal; no one foresaw what happened next. He was put facing down for a routine scan, and suddenly he could hardly breath nor cough out mucus that stuck in his lungs and throat in that afternoon. He was soon sent to a local ER and doctors there saved his life. Two days later before my family had a clear understanding of his medical situation, we were put the position to decided whether put him on vent or not. To save his life, we said yes. My dad was tortured by the discomfort and had a minor infection in his lung about a week later. My family again, was put under pressure to decide whether a tracheotomy would be performed or not. My dad eventually choose to have one; however, he seems to be in agony every day.

My point is that when you have time and energy to ask questions, to find out answers and to think, you better plan out your death. When you take out by surprise, you and your family may be rushed into making decisions that you may regret.
 
While the plan is an important thing, the thought process that goes into the plan is the most important thing.

But will your plan be implemented as you wish? You need both to put it in writing and to have your caregiver/family agree to follow your wishes. Doctors don't always have access to your paperwork all of a sudden, when they need to make an emergency decision--they'll often ask your family in the waiting room. This puts incredible strain on a family when they disagree. Please ensure your doctors, caregivers, and EMTs have easy access to your living will.

Invasive venting is an operation. There are risks. And you'll need to recover after the operation.

Whatever you do, put it in writing. If you change your mind later, ask someone to put it in writing for you to approve.

A lawyer came to my house (with witnesses) and did our final paperwork by watching my wife's reactions and listening to computer-generated "yes" and "no" answers.
 
The decision to have a living will or not is yours alone. My mother passed away from ALS on July 27th. I can tell you because she made her wishes clear with a living will. Her final days ended in the manner she wanted.
 
I did one early and then changed my mind about being vented. My social worker said that it would be easier to not change it, she said that you cannot undo a new one but you can always change your mind on the old one. Doesn't make much since.

I wonder about a will, I have written one out myself, I wonder if it will be legal, I don't have a lot.

Janie
 
I guess my current issue is that I'm in decent condition right now and a lot of current things could happen to me like a car accident etc. I wouldn't want a DNR unless I progressed further down the road. I don't want to be stuck unable to communicate. I want my loved ones to have a bit of say. I have read that sometimes dementia can come with ALS, not sure if that's true or how rare, but that would be awful. I see everyones in not putting that burden on them. I would hate to be the cause of conflict. It just used to be so cut and dry before. Guess the reality of it all is overwhelming.
 
>Guess the reality of it all is overwhelming.

Ditto that!
 
"When I can no longer interact with my family.."
 
sometimes dementia can come with ALS,

Indeed, it's unfortunate but true. Frontotemporal Dementia happens to a certain percentage of ALS patients. From what I've heard from other CALS, FTD can make a PALS irrational and very difficult to get along with.

Some research says that approximately 20-30% of ALS patients will show signs of frontal lobe decline, which affects organizational function and behavioral comportment. The worst affected will suffer FTD.
 
My social worker said that it would be easier to not change it, she said that you cannot undo a new one but you can always change your mind on the old one. Doesn't make much since.

No, that doesn't make sense. You can make a new one whenever you want. And it would be best to ensure all the old copies are destroyed.

Your will might be legal, but incomplete. It's best to get a real will made by an estate attorney.
 
I was a tax lawyer in past life and did plenty of wills (trusts mostly). Under California law, a later executed directive (living will) trumps an earlier version. A will that is totally handwritten and signed is as valid as a printed witnessed will. I probated a will once that was scribbled on a realtors notepad.
 
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