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taminator

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Joined
Mar 14, 2010
Messages
45
Diagnosis
03/2010
Country
US
State
Texas
City
Bryan
So after all this research, asking questions, checking here, checking there we finally called a hospice facility today for my mom. They come out, go through all their questions then they ask "Do you want to be resusitated?" to which my step-father says Well, YES! to which the hospice nurse said Then this is not for you and she leaves shortly there after.

Mom is basically paralyzed from the neck down, we can barely understand what she says anymore, starting to have trouble swallowing pills, complains she can't breathe, etc, etc. We have a call in to Texas Department of Assistive and Rehabilitative services but they can't even do a phone interview until Sept 27th. No idea when they can physically come to the house for an eval.

Guess more time on the phone tomorrow. Of course my parents haven't even discussed yet if mom wants a trach. How can you be this far into the disease and haven't even talked about this yet?

I am just at a total loss. Sorry, just had to vent. I'll be on the phone tomorrow again with her case worker from Methodist hospital in Houston.
 
Hello taminator, I am sorry to hear about your mom. My mom was diagnosed last month with ALS at the age of 82. The neurologist has already suggested bringing in Hospice, but both mom and dad are both resistant. My mom has not read the 5 wishes and my dad seems to be in denial ... hoping that if Mom gains weight she will get stronger and feel better. She has no paralysis but is down to 98 pounds, her speech is getting worse every day, she is very weak and has intermitant breathing trouble. How old is your mom?

Kindest Regards,
Ann
 
Hi Ann! So sorry to hear about your mom. My mom just turned 60. Was diagnosed in March and her decline has been rapid (to me anyhow). I think my parents are in denial also. All of us kids, remarkably, are being realistic about the situation.
 
So sad to hear about so many people being diagonosed with this disease that has no cure..... Why can't they find a concrete cure..... It really bothers me there are not answer about the root cause of this disease..... my father was diagonosed in April this year and its been so difficult for me to accept that my dad who is my best friend, role model and the best father in the world as this terrible disease.... I wish I could find some answer...
 
We all wish you could find some answer but as yet there are no answers. Unfortunately.
 
I'm really sorry to hear about your Mom. I don't know the rules for Hospice but that sounds terrible. There's also another option called "Palliative Care". I don't know much of the details but sometimes they're described as an interim solution prior to going to Hospice.

God bless!
 
Hospice care will not allow you to be resuscitated on their watch, as they are there for "end of life issues." From what I've read, some hospice agencies will take a person on a vent, but it has to be in place first. This all seems to vary from state to state and hospice to hospice.
 
As usual, CJ has a fantastic handle on the facts.
 
Yes, until I need to know something! My memory fails me at the most critical moments!
 
My Aunt Sally calls that CRS (Can't Remember S#$)
 
Could she go to a skilled nursing facility?
 
I am being naive here but what are the "5 wishes"? So sorry you are dealing with all of this.
 
My Wish For:

The person I want to make care decisions for me when I can't

The kind of medical treatment I want or don't want

How comfortable I want to be

How I want people to treat me

What I want my loved ones to know


You can get the booklet from your local hospital. It may not be available in all US.
 
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