Question to PALS on Vents
- Status
LizT
Very helpful member
- Joined
- Aug 8, 2010
- Messages
- 1,547
- Reason
- Lost a loved one
- Country
- US
- State
- WI
- City
- Beaver Dam
Im not a PALS, but a CALS. Not sure if Im understanding what you mean here, but I advise you to be very careful with this sort of thing. Legally, personal caregivers cannot disconnect vents. It can be considered assisted suicide or murder.
Now of course if the PALS chooses to have their vent turned off, they can do that, but a doctor must do it.
Now of course if the PALS chooses to have their vent turned off, they can do that, but a doctor must do it.
Gentleman Jim
Distinguished member
- Joined
- Dec 28, 2010
- Messages
- 208
- Country
- US
- State
- Indiana
- City
- Fort Wayne
Liz and I agree. Having said that, my cousin had ALS and he chose the day he wanted to be removed. He had
his children and some friends over to his house to play cards the night before. One year to the day he received
his vent he had it removed the next day by at the hospital.
What a glorious courageous act on his part. His funeral was well celebrated. They played the song. "Live like you were dying." He did go sky diving, He did love deeper. But, he had never rode a bull for 2.7 seconds. Somehow, I think that one just didn't appeal to him.
His wife is a grand lady, she will tell you, "you don't have five minutes to yourself" What love and
devotion. Of course we are talking the very hard end times.
It is amazing how the pals and cals develop such a working relationship that we can just be as real
as it gets. "Many a tear's have to fall, but it's all in the game."
I don't know that we have the answer you are looking for.
Blessings Jim
his children and some friends over to his house to play cards the night before. One year to the day he received
his vent he had it removed the next day by at the hospital.
What a glorious courageous act on his part. His funeral was well celebrated. They played the song. "Live like you were dying." He did go sky diving, He did love deeper. But, he had never rode a bull for 2.7 seconds. Somehow, I think that one just didn't appeal to him.
His wife is a grand lady, she will tell you, "you don't have five minutes to yourself" What love and
devotion. Of course we are talking the very hard end times.
It is amazing how the pals and cals develop such a working relationship that we can just be as real
as it gets. "Many a tear's have to fall, but it's all in the game."
I don't know that we have the answer you are looking for.
Blessings Jim
dian_na
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- US
- State
- mo
- City
- saint charles
This ain't mah first rodeo, of course I wouldn't disconnect the vent myself. Also we were instructed as I am sure everyone is that it can be removed at anytime and what I should do, that was 4 years ago, 11 years into ALS. ALS has progressed and mom is near non responsive, barely a blink. I am uncertain what I will do in the not too far future. I was in hopes others who are on vents would perhaps have an opinion as to how they felt about it.
I can't phantom the idea of doing it actually at all, I just want to make sure I am doing the right thing, she's not just anyone, she's my mom.
I can't phantom the idea of doing it actually at all, I just want to make sure I am doing the right thing, she's not just anyone, she's my mom.
pmbenb83
Distinguished member
- Joined
- Aug 6, 2007
- Messages
- 400
- Diagnosis
- 03/2008
- Country
- US
- State
- VA
- City
- Stafford
I'm so sorry you are having to make this decision for your mom. What a very hard decision to make. If it was up to me, my husband would would be vented and out live me. But my husband chose not to be vented and to let nature take its course.
You're so right... she's not just anyone and she will forever be your mom!
{{{HUGS}}}
You're so right... she's not just anyone and she will forever be your mom!
{{{HUGS}}}
LizT
Very helpful member
- Joined
- Aug 8, 2010
- Messages
- 1,547
- Reason
- Lost a loved one
- Country
- US
- State
- WI
- City
- Beaver Dam
Well I think if there is a way for her to respond to yes or no questions, then she should make the decision. Can she move her eyes at all?
We had a great man on here, JoelC. It will be 6 months next monday since he chose to have his vent removed. I will not pretend to know all of the reasons he did this, but I know one of them was because he didnt want to burden his wife anymore.
Im very sorry you are in this situation. Did you two talk about what she wanted before she got to this stage? Did she want to be taken off if she became completely locked in? Im sorry, not sure if you had mentioned it or not, but is your mom also suffering from FTD?
We had a great man on here, JoelC. It will be 6 months next monday since he chose to have his vent removed. I will not pretend to know all of the reasons he did this, but I know one of them was because he didnt want to burden his wife anymore.
Im very sorry you are in this situation. Did you two talk about what she wanted before she got to this stage? Did she want to be taken off if she became completely locked in? Im sorry, not sure if you had mentioned it or not, but is your mom also suffering from FTD?
dian_na
Distinguished member
- Joined
- Mar 8, 2009
- Messages
- 121
- Reason
- CALS
- Diagnosis
- 10/2007
- Country
- US
- State
- mo
- City
- saint charles
I knew joel very well, He got his vent about a month before my mom did, He would have lived forever had it been tottally up to him. Nice guy, I loved his wood work shop. Joell was very much in touch when he decided to end the ventilator, that was really sad.
My mom isn't able to communicate at all recently, she was blinking to yes questions but now hardly at all. I am in hopes she is just exhausted from being in the hospital and she'll come around. Her eyes were fixed straight up to the right, today they are down lowered to normal position. So maybe by tomorrow, I can only hope. She never talked about what was to come, actually refused to talk about it, I'm not certain she ever accepted having ALS at all. I did and have asked several times about the vent and she always responded she still wanted it. She's still in there I can see it through her eyes. I'll pray tomorrow and rest allows her to respond.
My mom isn't able to communicate at all recently, she was blinking to yes questions but now hardly at all. I am in hopes she is just exhausted from being in the hospital and she'll come around. Her eyes were fixed straight up to the right, today they are down lowered to normal position. So maybe by tomorrow, I can only hope. She never talked about what was to come, actually refused to talk about it, I'm not certain she ever accepted having ALS at all. I did and have asked several times about the vent and she always responded she still wanted it. She's still in there I can see it through her eyes. I'll pray tomorrow and rest allows her to respond.
- Status
