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Svechina

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Mar 30, 2012
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Loved one DX
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Hi - my mother in law was diagnosed in May 2011; it began with slurring of the speech and difficulty performing her daily functions. In addition to ALS, she was also diagnosed with Dementia. The past few months she has degressed so quickly and on Tuesday she went into cardiac arrest. She has been in ICU, on a ventilator and the doctors did a hypothermia treatment where her body is cooled for 24 hours and then warmed for another 24 hours to prevent brain damage, now we are waiting for her to wake up so we cam judge how much brain damage was done.

The doctors are talking about traching her, what are your experiences with a trach? We are afraid of making the wrong decision, she definatly needs the feeding tube but we are afraid of her reaction to both.

Please advise!
 

hangingon1

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What were her wishes if any. Does she have a living will? I know it is not an easy decision to make. If I were the one making it,I would look at quality of life. Since her ALS was bulbar and affecting her speech and nutrition, her quality of life on a one to ten scale was probably a 4. Now that she has possible brain damage it will probably be a 2. I would not trach her since she could be near the end anyway. My grandfather had a stroke years ago that just wiped out his mind and he could not eat. He was trached and lived another 6 months and shriveled up to about 90 pounds. My grandmother said it was the worst decision she made to prolong his life. He would have never wanted to lose the last of the dignity that he had. God bless and I hope you are at peace with your decision.
 

HelenL

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I agree that it would depend on her wishes when she was able to express them... though that doesn't mean she won't have changed her mind! Do the docs want to trach her before she wakes up? If they can wait, perhaps she'll be able to let you know, even through an eyegaze machine if she cannot write or speak... what she wants. There are many people on this forum who may not be able to move, yet they are contributing, thinking, and living... but if she doesn't even have that ability, then I would definitely think about making her comfortable and letting her go peacefully without major interventions. It's a hard decision. Does she have a health care proxy? That may help make the choice, while you still have time to make make it. Good luck.
 

Ms. Pie

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PALS
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If it were me especially if I had dementia, I would say no trach. I do have a living will and that is my directive even without dementia.
 

momap53

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EGA
Tough decision. Personally, I would not want a trach with the FTD on top of ALS. Our thoughts and prayers go out to your mom and you and your family during this difficult time.
 

Anja

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06/2012
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zh
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Take care, this must be a hard time 4 you and your family.

Anja
 

Svechina

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Joined
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Loved one DX
Country
US
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NJ
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Linden
Thanks everyone! It is a tough decision! Your well wishes are appreciated dearly!
 

momap53

Very helpful member
Joined
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Messages
1,640
Reason
PALS
Diagnosis
05/2011
Country
US
State
GA
City
EGA
Let us know how things go. We'll keep you in our prayers.
 

lovedbygoldens

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Joined
Dec 9, 2011
Messages
49
Reason
Loved one DX
Diagnosis
03/2011
Country
US
State
MO
City
California
It truly would be up to her wishes however if her wishes where never expressed than I think the decision would be up to her closest family (your husband, her spouse and any other children) to decided. My mom has the feeding tube however is no trach.

Your family is in our thoughts and prayers. I am so sorry you all are dealing with this.
 

LizT

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Beaver Dam
My pals had a trach and was on a vent for 7-8 years. His quality of life on a scale from 1-10 was a 13. BUT... a few months back he told me if he ever developed dementia, to pull the plug.
This probably doesnt help at all. Just wanted to share a piece of our story.
 

notgivnup

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Joined
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Messages
815
Reason
PALS
Diagnosis
11/2010
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OS
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Darkside of Moon
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country
So sorry for your Mom , My Prayers are with your Mom and the Family. Please let us know how she is doing. {HUG}
 

cubcake

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Joined
Jul 18, 2011
Messages
270
Reason
Lost a loved one
Diagnosis
10/2011
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Ca
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San Ramon
Hi there. My husband is in the same boat. Started with slurring and now we have ALS and FTD. ALL his doctors are urging no trech, and they are divided on the PEG. The issue with the PEG is, will they hurt themselves with it, and will they be compliant? Of course, the FTD makes seeking their opinion null and void, but if you know what their feelings were before all this hit, please take it into consideration. I know my pALS said no, but then, he was a long distance runner then, and it was probably an easy decision to make since "that was never going to happen!"

Now, I, too, am on my own and struggling with the question. So far, I'm leaning toward no trech but a PEG.

Also, our doctor is suggesting no BiPap. I guess his thinking is to keep him comfortable, keep him nourished, but let nature take it's course.

If you are a believer, as am I, I have to feel that I am just easing his path to a better 'life.'

Peace be with you at this very difficult time. Let us know how you are doing. We understand and we care.

Shelly
 

Katie C

Very helpful member
Joined
Aug 1, 2009
Messages
1,560
Reason
Lost a loved one
Diagnosis
07/2009
Country
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CA
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San Jose
A couple of thoughts. FTD will make it more difficult to follow directions regarding care and compliance for the trach and PEG. Before his FTD took over, he had indicated he did not want either so we followed his wishes. But even then, it was difficult to get him to follow the most basic instructions regarding self care because he didn't believe he had limitations. We had a biPap. It sat unused because unless someone sat and stared at him all night, he would take it off as soon as we left the room. He would find foods he was unable to eat ... usually getting up during the night to search the kitchen. I wouldn't give up because of the FTD.. .but do remember that it does change the rules.
 

Toto's Dorothy

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Jan 31, 2012
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Diagnosis
11/2008
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Kansas
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Emerald
Personal choice. My choice is to trache as long as my brain is functioning on all 6 cylinders. I want to be here for my kids as long as possible.
 

notme

Extremely helpful member
Joined
Apr 3, 2011
Messages
2,581
Reason
PALS
Diagnosis
08/2011
Country
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Fl
City
Orlando
As others said--what were her wishes BEFORE dementia? With the loss of our mind--quality of life is seriously diminished in my opinion. I wouldn't want a trache in this situation if it were me.
 
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