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cristinasalsfight

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Aug 31, 2016
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Diagnosis
01/2006
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us
State
california
City
san francisco
hello
my grandmother has had ALS diagnosed for 10 years.
the last 3-4 years bed ridden
no voice maybe 1-2% no movement , constant aspiration from food and water because she didn't want feeding tube and enjoys eating.
she is 78 years old
she now has severe pneumonia from aspiration and in the ICU treating it.
for 3 days on antibiotics the pneumonia has not got better but she is looking better then when it first happened 130 ppm heart rate , fever,
now its my choice as grandson and power of attorney to keep her in icu/treatment of pneumonia or put her in in patient hospice to let her pass.

i am unsure what to do.
she can still open her eyes once in a while and today we got a laugh out of her.

the treatment for pneumonia with all the breathing exercises and sucking up fluids via a tube through her nose now on a feeding tube through her other nostril. and taking antibiotics through iv.

i don't know what to do.
she expressed before that she is ready to go.
should i
continue to torture her with treatment to attempt to get back a baseline lower then before with a good chance of getting pneumonia from aspiration again.


or put her in an in patient hospice medicined up for her to pass peacefully.


i don't want her to suffer anymore but i don't want to kill her and give her the death sentence by sending her to in patient hospice to die.


dawwwwwwwwwww

im 30 with a finance and 2 year old baby.
i am her poa and i love her and I've slept in the hospital everyday since she's been there I've been her caregiver whipping butts and suctioning saliva and food from her mouth I've done my best. i just don't want to regret or feel i gave up.


please give me your advice , experience , thank you and god bless
 
Christina's grandson,
Can't you ask her this question? She can still indicate yes or no with her eyes from what you say. If not, here are some thoughts.

She is using a feeding tube she does not want for home.
She will aspirate again, as you say.

I am not sure why she would need an inpatient hospice if you are willing to take her home. That's where most of our PALS die, including my husband.

You could ask if she would rather stay in the hospital with the tubes or come home...
You could ask her if she is still ready to go...and if so, where she wants to be.

Asking for that, or for hospice help at home or in a facility to keep her comfortable ("comfort care only") isn't killing her. ALS does that, and has been since she got it.

Will you regret that she got ALS and died? Yes.
Would you regret that you helped her live as well and as long as the disease allowed, and then helped her die in peace? No.
Is that help giving up? No, it is letting go.

Best,
Laurie
 
lgelb
thank you so much.
thank you thank you thank you.
i just don't want to have remorse or guilt.
that is selfish
i just want her to pass comfortable and in peace.
 
You sound like a wonderful granddaughter. Take care of yourself too.
 
I think Laurie's advice is as good as it gets.

My wife had a severe case on pneumonia and spent a month in the hospital, mostly ICU or CCU. I talked to her a lot and thought she was understanding me; she does not remember a thing about her hospital stay. While I think you need to talk to your grandmother as Laurie suggests, I'm not sure your grandmother will "get it" even if she answers you.

That leaves the decision to you. You know your grandmother better than anyone here. She gave you power of attorney so she trusted you to make tough decisions. You indicated she'd let you know she's ready to go. She's currently has a feeding tube which she chose not to use when making choices for herself. Talk to her, talk to a counselor, maybe talk to your minister/priest, and make a decision. I'm sure she'd back you decision.

I have had a conversation with my wife and my children (so they can support their mom) about my wishes for not going to extraordinary means to continue my life. This has nothing to do with giving up or not fighting, I will not survive ALS, that is a given. I'll enjoy every minute I have with my loved ones but I have no fear of dying and the only control I have over my disease's progression is to determine that when God decides it is my time to go, doctors won't get in the way. Long winded way of saying if I was your grandmother I'd want to call in hospice, get comfortable and put an end to this. I am not your grandmother I don't know what she thinks. But you probably do. You are an adult, time to put your big boy pants on and make a really really tough decision.

Sorry you had to go through this. Good luck.

Bill
 
Sweetie, it sounds like you've heard what you needed to hear. Let me add another perspective. Fearing just this situation, my children are not my medical POAs. I don't have ALS, but I've read and seen enough to know that if I'm in the situation your grandmother finds herself in, I want my wishes (already expressed and documented) followed. I don't want my children to be burdened with guilt or fear of guilt, and I don't want to be kept around because of it either. Now if I'm lucky enough to outlive my contemporaries, I may have to get creative...

Big hugs.

Becky
 
I'm so happy I found this forum. And I'm very thankful for everyone's input. May your God bless you and your families
 
Cristina, there are no easy answers in this situation. Please do not feel guilt for making the decision to live by her decisions. My mother passed in Feb. Three days after leaving the hospital. She died at home where she wanted to die surrounded by family and died peacefully without pain. I still carried around guilt for several months. The past month or so I have come to realize that I did exactly as she wanted me to do and it has made it easier for me to except the loss. My thoughts and prayers are with you and your mom.
 
This will continue to happen. I would go for comfort only.
 
She has expressed that she is ready to go. Believe her. It is the best you can do. You cannot regret that you did the best you could do.
 
First, God bless you for taking care of your grandmother. If I were her, I would want to go in peace. The fact that she didn't accept a feeding tube at home is convincing enough for me to believe she doesn't want to linger when her body can no longer support itself.
 
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