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pamwagg

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28
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Friend was DX
Country
US
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CT
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Wethersfield
Dear Everyone

I have been so busy, looking after my second best friend, who is elderly and very frail, as well as visiting Joe, I have not been able to come back here for a couple of weeks. Joe has been in the ICU now for a month, after getting aspiration pneumonia on July 4 (he'd had it at least a week before anyone recognized it). He got almost well from that in 2 and 1/2 weeks, with the assistance of a trach and vent, but was suddenly laid low with a second, bacterial pneumonia, a urinary tract infection, and a small blood clot in the lungs all due to simply being in the hospital so long. He had been "up" mood-wise the whole while he was sick the first time, but the second time he has been very down and discouraged. Worse, he is now having spells of trouble breathing even with the vent. They sedate him to tilt his bed upside down and put a "shaking vest" on him, both to loosen the secretions deep in his lungs, then deep suction him and bring out a lot...But it seems it always builds up again and more.

You have to understand that Joe is an eternal optimist and has never been depressed a day in his life, so for him to look down and discouraged is really serious. And he sees how serious the situation is: 4 weeks in the ICU and he is actually worse than ever, because even a vent doesn't help him breathe all the time. Can you tell me, is this how death commonly occurs with ALS? THat lungs secretions choke a person? I thought in ALS death was peaceful and easy, but this doesn't look it, if indeed death is near...Is it?

Oh god, I thought I'd be able to handle it but I've never lost anyone close to me, not even, at 54, my parents. And with schizophrenia I've always been taken care of, sheltered, shielded...No one can shield me from this. So, someone please tell me what is happening and what to expect, please? I'm sorry if I sound like a child, pleading like this, but I'm scared I won't know how to help Joe and I so much do not want him to die -- if he is dying -- scared.

Thanks,

Pam W
 

jean

Active member
Joined
Jul 8, 2006
Messages
52
Reason
PALS
Diagnosis
07/2004
Country
UK
State
West of England
City
Goodplace
Hi Pam
I don't think anyone here can answer the all important question as to whether joe is dying . You need to talk to the staff taking care of him on the ICU. Any chest infection is serious , but as to the prognosis this time , you need to talk to the folk looking after him. They should be able to guide you as to what to expect , whether he is finding it all hard going , but getting better, or whether the distress you see, relates to increasing severity of his disease. It isn't always easy to see the person you care about having a tough time , but having a tough time doesn't necessarily mean he is dying. Ask those who know and if what they tell you is bad news , at least you can prepare and also strive to help him reach a state of comfort and peace. if what they tell you is more positive, it will then be up to you to try and help Joe to regain his optimism , which he is quite likely to have lost with 2 chest infections in a row. It would be enough to dampen anyone.

Jean
 

brooksea

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Joined
Sep 27, 2006
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5,171
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Other
Country
HM
Pam,

I'm very sorry to hear that Joe is in ICU. Jean is right, it would be very hard to say if he was close to the end. You have to hope that the antibiotics and clearing of his lungs is helping rid the infection. Pneumonia is a problem with PALS, and some have it a lot and come thru fine. Please let us know how things are going for you and your friend. Feel free to use us as a sounding board, as we all have our own emotional ups and downs and this forum has many helpful people that truly care.
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Pam -

Would it help for you to spend some time with the hospital chaplain? I don't think being religious yourself is necessary for seeking that kind of direct support and chaplains specialize in counseling in these circumstances. Just a thought.

Liz
 

pamwagg

Member
Joined
Oct 11, 2006
Messages
28
Reason
Friend was DX
Country
US
State
CT
City
Wethersfield
Hi Everyone and thanks for your comments and suggestions.

I asked the PA to come talk with Joe and me about how he is doing, as Joe is as concerned as I am and I think he doesn't know if he is going to get better or not either. The PA basically said that so far there has not been any improvement -- his O2 concentration is still too low to try to wean him off the vent and he still needs other daily measures like the bed tilted upside down and the vibrating vest plus frequent deep suctioning to clear his lungs of "gunk." But no one is giving up hope, which is good. She told me the nurse who gave me the dire report the other day was looking at the big picture, not telling me about how Joe was doing that very minute. I asked Joe pointblank that if this was all, if his life were to continue to be only this -- the same level of care and frequency of suctioning, was it what he wanted? He emphatically nodded yes. So my own visiting nurse assured me that when she cared for ALS patients on vents, though they needed deep suctioning they often lived for several years with careful care. So she was pretty optimistic, despite the hospital nurse's pessimism. What I don't know about is Joe occupying an ICU bed and how long that can go on for...But we take it day by day. That's the best we can do.

Liz, I think I will make an appointment with a chaplain. I always speak with one when I am in the hospital, but it never occured to me to speak with one now. Thanks for the suggestion.

Pam W
 
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