Status
Not open for further replies.

ECpara

Senior member
Joined
Jan 7, 2012
Messages
605
Reason
Lost a loved one
Diagnosis
02/2012
Country
US
State
GA
City
Thomasville
I hesitate writing this post but I need to get it out, it's eating me up inside. Tom had his ALS clinic appointment Thursday, his breathing tests were so low. Lung capacity 20%, FVC 21%, aspiration was the highest at 29%. Last visit five months ago all were in the 40s and 50's. And before that in the 60s and 70s. So you all know what I'm getting out, the math points to ? The doctor ordered oximetry tests to be done while he's sleeping to be sure. He's hoping maybe the seal wasn't tight. But I was there during the tests and there was no problem with the mask, Tom just couldn't breathe well. He uses his Trilogy as much as he can during the day, absolutely will not tolerate it at night. I also noticed yesterday when he was having a PEG tube switch out in ambulatory care that his respiration rate even while napping on the hospital bed, was between 25 and 27 and sometimes as high as 32. That was alarming, too. He's chosen not to vent (I'm glad) but just not ready for this. Any thoughts? Will he go in his sleep one night?
 
So hard to see those figures, especially as you say doing the math along the rate of progression.

There is a good chance that he will simply go peacefully in his sleep, I would hope so for the fact that I would prefer that way.

But he may simply deteriorate more and you both know that he is entering end stage.

Again, we just can't ever quite predict the details. I would say however, that if he won't use his bipap at night to sleep, it could well be possible xxx

Damn I hate this disease :(
 
We all face that time when is none of us know. For myself writing my feelings help. Maybe this with help you. I was diagnosed 9/102012.

On The Wings of Sparrows

Bound by movement.
Bound by speach.
Bound by the unknown and fear.

I close my eyes and dream.
The Ties that binds falls apart.
And seek the flight of sparrows.

To dance on the freedom of the wind.
Not an eagle nor falcon.
Sometimes overlooked but always there.

Reality has a way of shaking up your life.
To find a safe place where there are no boundaries.
The dream transcends and gives hope.

To let your own spirit seek the flight of sparrows.

Patrick
 
Tillie, thank you for your encouraging words, even if we are speaking of his death. I know it's coming and I just pray it's peaceful.

Patrick, that is beautiful. For you and Tom and all PALS, dreams are the one peaceful place you have. I've often thought that when I lie next to him, watching his chest go up and down (making sure he's still with me). When he's asleep, what a nice escape, dreaming that things are the way they used to be.
 
Patrick, your spirit is reflected beautifully in your poetry. Thanks for sharing!
Ecpara, how poorly lit is the crystal ball. The breathing issue must be SO scary! Ironically, my hubby never had any breathing issues through his 2+ year journey! Yet he died in his sleep- respiratory issues was listed as a cause, along with moderate progression ALS! You just NEVER know with this disease. We all pray for a peaceful ending for our loved ones (and ourselves!) and from what I've read here, looks like that is the norm. Guess that is something to be grateful for! Hugs and love are sent your way.
 
E, I know what you mean about it eating you up in side. a peaceful death in your sleep--yes, that would be a wonderful thing. It is what I pray for for my husband, and myself someday.

I understand where you are coming from. that is all I have to say.
 
Such a hard and unpredictable journey we are all travelling, I know what you mean about lying next to your hubby and just watching them at rest while they are sleeping, I find that this is when I get weepy, I too pray that BJ will just drift of in his sleep when it's his time and not have to struggle towards the end.
Love and hugs too you both.
Love Gem
 
Nancy, he might. Or lacking respiratory support at night and with a RR that high, he might have a stroke or heart attack, followed by a coma or death. I wouldn't delay in finalizing or finishing anything important, and I would be as ready as one can really be. I was just wondering what's different about the night for him in using BiPAP and whether it could be addressed. When you noticed his RR, was he on BiPAP then? What does his RR run when he's on it during the day?
 
Gem that is the hardest for me too. I become a sobbing mess.
 
My heart hurts so for you right now. Yes, those peaceful moments of pretending things are normal--I know what you mean. I will live in denial as long and often as I can. Praying that Tom's journey is peaceful, and that you take comfort in that. Love, Becky
 
ecapra it sounds like your husband and i are on the same path. i had 70s in November, down to 50 now and with clinic in February, i'm sure it will be worse. I cant talk well now, not because Im slurring, but because I cant get enough air.
Ive told my wife many times that I just want to go to sleep and not wake up. I really think that would be best for all of us.
The air hunger episodes are really truly scary-probably too much CO2 in my body, damn I knew the greenhouse effect would get me!
And yes, sleeping is my only escape-i can walk and do all the things i took for granted just 8 months ago when I was awake.
I hope his end is peaceful. I know Im scared to live and Im scared to die. I also know my body well enough to know its coming soon one way or another-just hope its without pain or fear.
Sometimes I think it would be kinder for this disease to take your mind too, then at least you wouldnt know what was in store. forgetfulness can be a blessing.
 
> I cant talk well now, not because Im slurring, but because I cant get enough air.
Ive told my wife many times that I just want to go to sleep and not wake up

yet we prevail whenen i dreram/sleep o can eat , et al
 
((((((((((Group Hug)))))))))))
 
>And yes, sleeping is my only escape-i can walk and do all the things i took for granted just 8 months ago

me too, Neil -- I lay in bed just remmembering walks, eating lamb, field training the dogs ... the most pleasant part of my day :)
 

Attachments

  • Capture717.jpg
    Capture717.jpg
    208.4 KB · Views: 268
  • car (2).jpg
    car (2).jpg
    308.5 KB · Views: 288
  • 20071102-20071102-DSC_4815-1 (2).jpg
    20071102-20071102-DSC_4815-1 (2).jpg
    573.5 KB · Views: 261
  • Capture817.jpg
    Capture817.jpg
    564.3 KB · Views: 281
  • DSC_0297.jpg
    DSC_0297.jpg
    89.8 KB · Views: 282
  • DSC_0048-3 (2).jpg
    DSC_0048-3 (2).jpg
    2.5 MB · Views: 274
  • DSC_7762-2.jpg
    DSC_7762-2.jpg
    1.9 MB · Views: 269
  • IMG_0004.jpg
    IMG_0004.jpg
    2 MB · Views: 332
  • 10372779_316121408548040_9147910348221509543_n.jpg
    10372779_316121408548040_9147910348221509543_n.jpg
    78 KB · Views: 281
  • DSC_8265-3.jpg
    DSC_8265-3.jpg
    613.7 KB · Views: 265
So sorry to hear this Nancy. My thoughts are with you both.
 
Status
Not open for further replies.
Back
Top