Torturous

lisaann1170 · 03-12-2010, 05:00 PM

The last week has been hellish and I'm finding it hard to find the strength the deal with Dad's illness.

He's in the VA hospital hospice. He has pneumonia and a blood infection. The morphine and Ativan can't make him comfortable. At times, he's on a morphine drip and he's still thrashing and trying to pull out his feeding tube, IV, etc. He gets fever spikes that make him delirious.

(For the record, he's on minimal oxygen for the pneumonia and his CO2 levels are being monitored. I know the anti-anxiety medication Ativan also relaxes muscles - which is bad - but he's a *very* high-anxiety person and has been on benzodiazapines and the like forever. He's also on amitriptyline. For him, ALS and a long-standing anxiety disorder are a horrible combination.)

I hadn't expected the end to be like this. It's been a week and I can't imagine how he can hang on much longer. He still refuses the bi-pap despite our best efforts to introduce it to him. He literally gasps for air which scares the daylights out of me. I know he's scared and I wish I could make it easier on him.

I keep reminding myself that this time represents only a small fraction of his life. He's so much more than this.

sadiemae · 03-12-2010, 05:04 PM

Lisa, my prayers are with you and your dad.HUGS Lori

Katie C · 03-12-2010, 05:43 PM

Lisa.. when the morphine wasn't doing it any more for Mom, they added methadone to the "cocktail" and it really seemed to help. You might want to ask the hospice people.. or get them to contact the doctor in charge to report that his pain meds aren't doing the job. He's at that point where "potential addiction" no longer matters. Mom got methadone 3x daily plus hourly morphine. No, she wasn't particularly coherent.. but she wasn't thrashing in pain or yelling any more either.

lisaann1170 · 03-12-2010, 06:48 PM

Katie, I truly appreciate the suggestion. I'll check into this.

brooksea · 03-12-2010, 08:12 PM

Just wanted to let you know you are in my prayers. This shouldn't be happening.

jbaiza · 03-12-2010, 11:06 PM

I am so sorry you are going through this, the disease is hard enough but when you already have high anxiety and depression (in my moms case) in the mix it makes it that much harder to make things more "comfortable" for everyone. My mom has ALS and we are trying to find the right combination as well to make her more at ease. She has OCD bigtime so its just horrible. She's on 2 different antidepressants, 2 different anti-anxiety meds, muscle relaxers, and 2 different pain killers as well as ambien at night. And it's still not enough. We have hospice coming to our house 3 times a week and they just brought over the oxygen today. This is a torturous disease for everyone involved, but we are here for you. And it sounds like our parents are in the same stages right now with the disease. So if you want to talk please know that I am here for you. Stay Strong, Jenny

tdamess · 03-13-2010, 01:18 AM

all i can say is my thoughts are with you take care as much as you can

Blubear · 03-13-2010, 01:35 AM

A lot of docs shy away from Methadone. (which is actually stupid considering the late stage of the disease) but, if they say no, go for the dilaudid if you can. That will surely make your dad feel better. Hang in there hun.
Hugs, Kari

Katie C · 03-13-2010, 02:44 PM

Kari.. I agree that a lot of docs shy away, but in general I have found that hospice docs are more open to whatever works to keep their patients comfortable.

lisaann1170 · 03-15-2010, 03:54 AM

Thanks all.

Fortunately for my dad, his suffering has ended. He passed Saturday morning. I'm still too numb and shaken to write a proper tribute. It's been a wild 9 months filled with shockingly rapid changes.

I thank God repeatedly that he's free even though my heart aches terribly.

Tom's Support · 03-15-2010, 06:51 AM

There are no good words Lisa, but you need to know that everyone who reads your last post will cry out to you, for you. Big hugs, you've been a brave warrior.

kelly · 03-15-2010, 07:39 AM

I am so sorry that he suffered so much at the end. I am sorry for your heartache. I am sorry that this damn disease has taken another wonderful life. Thinking of you...thoughts and prayers being sent your way.
Fondly,
Kelly

CAHPAH · 03-15-2010, 07:44 AM

Lisa
So so sorry for your loss.

tdamess · 03-15-2010, 08:10 AM

wishing you comfort thoughts of him before this als came to be ... may he be welcome by god himself now that the gates of heaven opened up for him

mare · 03-15-2010, 08:34 AM

Lisa,

My condolences on the loss of your father. So sorry for all he & your family had to endure through this. My prayers will be with you and your family today.

Marianne