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mcarpenter526

New member
Joined
Jan 3, 2007
Messages
2
Reason
PALS
Country
US
State
MA
City
peabody
My father has ALS. He is 60 and is a Polio survivor. I read these threads and see doctors getting involved, providing options, helping the families look for answers. Not with this family. He was sent from neuroligist to nueroligist. Nobody willing to diagnos; lets wait and see. If the symptoms continue to degrade it's post polio, if they dont it's ALS. Well 8 months later his wait is way down, cant walk, can barely move one arm to take a drink. Yesterday his choking escalated, and now hospice has him doped up. A few weeks ago he told me he wants to live if he can remain home. The problem is he's a fighter. Would not except it was ALS and nobody would tell him definitively. Now they tell him, and he doesn't beleive it. sooooo he except discussions about planning on death. He told me this wont kill him, julst leave his quality of life compromised.....If we had the options early we could have got him a feeding tube, set him up to make decisions on a vent, etc..... My mother wants to keep him on morphein and let him pass. With all the drugs he is on and his current condition she signed a DNR. Is it too late to fight. Should I go against hospice and have him brought to a hospital, a feeding tube put in, is there anything I can do. I feel like I am giving up on him. I feel like i din't fight hard enough. I am confident I could get my mother comming any direction I think would work.... but I don't want to make the wrong decision. I just feel like we are doping him up and starving him to death becasue he had one day of excessive choking and shortness of breath. any advice
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi. You are in a difficult position because your mom has signed the DNR order. You need to ask some serious questions. If he gets a feeding tube and comes home is your mom capable and willing to look after him? Is his breathing compromised yet? Does he need a vent yet or just a Bipap or nothing yet. A bad day of breathing isn't an automatic death sentence. Weight can be gained back on a feeding tube. Quadbliss and Bill 60 are on vents and are happy to be alive. My vote is to revive your dad and ask him again when he is lucid what he wants. AL.
 

mcarpenter526

New member
Joined
Jan 3, 2007
Messages
2
Reason
PALS
Country
US
State
MA
City
peabody
yes his breathing is compromised because he lost one lunc as a child. His weight is down. Will he be able to come home with a vent? Will he have to stay at a hospital? Is it to late to get a feeding tube if his weight is so compromised
 

mlb

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Joined
Jan 3, 2007
Messages
132
Reason
Other
Country
AU
State
Victoria
City
Melbourne
My brother is being cared for in his own home. He was diagnosed in 2003. He is on a breathing machine, has a feeding tube, and is totally immobile. He communicates with his eyes. He is 49 years old. Most important through his ordeal for his mental state, is being surrounded by loving and caring people. This allows him to hope, even now when things are so bad for him.
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
I agree with Al. If you think he would want to live, and his home environment is such that you could bring him home (24 hour care, family members trained to provide that care). Revive him and ask. Hurry, there is not much time!

Mike
 
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