Old 01-19-2014, 11:07 PM #1 (permalink)
New Member (Say Hi)
 
Join Date: 2014
City: Dacula
State: Ga
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 1
NCurran825 is on a distinguished road
NCurran825 NCurran825 is offline
New Member (Say Hi)
Join Date: 2014
City: Dacula
State: Ga
Country: US
Interest: I am a family member of someone with ALS/MND.
Posts: 1
NCurran825 is on a distinguished road
Default What are the final stages?

My mom was diagnosed at the end of October 2013. Just 2 months before that she was diagnosed with kidney and colon cancer as well, only patient recorded at Emory University to have both cancer and ALS at the same time...., anyways.... she had surgery on the 10th of December to remove the tumor in her colon, she had trouble coming off the breathing tube because of ALS, and now she is on a full time vent at home after spending 34 days in the hospital. I see she is weaker and weaker every visit I make. Dad informed me today that she keeps having these "anxiety attacks" (as one dr. called them) where she can't breathe, but come to find out they aren't "anxiety attacks" just a sign that her lungs are getting weaker and the end is in sight. Is this truly the end? I have had a sinking feeling for the last 10 or so weeks that she would pass on her birthday, which is today January 20th, but I just want to know from people who have seen the end, does this sound like it?

Thankfully she is a saved woman, and dad is constantly getting peace from Jesus, but still this is the hardest thing ANY of us in our family have ever gone through.
NCurran825 is offline  
Old 01-21-2014, 03:33 PM #2 (permalink)
Member
 
Join Date: 2009
City: Colorado Springs
State: Colorado
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 408
BrianD is on a distinguished road
BrianD BrianD is offline
Member
Join Date: 2009
City: Colorado Springs
State: Colorado
Country: US
Diagnosed: 08/2009
Interest: I have been diagnosed with ALS.
Posts: 408
BrianD is on a distinguished road
Default Re: What are the final stages?

I'm not a CALS that has gone through it, but end stage usually refers to
1. Respiratory insufficiency and and not getting enough O2 and build up of CO2, eventually into respiratory failure. Pneumonia could also aggrevate this.
2. Starvation/dehydration for those that have decided against a feeding tube and just can't get enough food or water to continue.

If your Mom is on a ventilator, she should not have respiratory troubles unless there is another issue besides ALS. Other PALS have lived 20+ years using the vent.

But getting weaker and weaker fairly quickly has been reported before.
BrianD is offline  
Old 01-22-2014, 12:47 PM #3 (permalink)
zoohouse's Avatar
Senior Member
 
Join Date: 2013
City: Salmon Arm
State: B.C.
Country: CA
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 960
zoohouse is on a very distinguished road
zoohouse zoohouse is offline
Senior Member
zoohouse's Avatar
Join Date: 2013
City: Salmon Arm
State: B.C.
Country: CA
Diagnosed: 07/2012
Interest: I am a caregiver for someone with ALS/MND.
Posts: 960
zoohouse is on a very distinguished road
Default Re: What are the final stages?

Your mother may have had the tumor on her colon removed, but she still has it in her kidney. Also colon cancer usually requires chemotherapy to completely cure it. How is her weight? Many people on ventilators can still trigger a breath, but eventually lose it, eventually the ventilator is totally doing the breathing. I am so sorry for what you and your family are going through; ALS is terrible on its own, but with cancer it would be worse. In my experience the type of cancer your mother has without chemo, and following surgery is grave. Be with her as much as you can, as well as your other family members. Love on her to the end. God Bless.

Paulette
zoohouse is offline  
Old 01-24-2014, 06:41 PM #4 (permalink)
Member
 
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
mrvaughan mrvaughan is offline
Member
Join Date: 2013
City: Grand Rapids
State: MI
Country: US
Diagnosed: 05/2000
Interest: I am the wife of a 14 year ALS/vent survivor
Posts: 101
mrvaughan is on a distinguished road
Default Re: What are the final stages?

Right before my husband went on the ventilator, he also had the "anxiety attacks". We did not know at the time, but they were the beginning of the end with his respiratory failure. He has now been on the vent for 6 years, but now, without anything else going on physically other than the ALS, he is starting to have respiratory problems again. His lungs are very weak, and has a lot of secretions. These can harden and block his airway. The other day, his O2 (pulse ox taken) dropped to just 50%. We never did find out why, we moved him around, suctioned his traech and in the end, used an AMBU bag to get his O2 back up to the upper 90's . God Bless your father for taking care of her at home. Monitoring and taking care of a ventilator patient can be a 24 hour job. Try to get in there and learn what he does and give him a break so he can get out. Good luck, and God bless you.
Mary
mrvaughan is offline  
Closed Thread

Tags
als, anxiety, breathing, dad, diagnosed, family, stages, surgery, vent


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off

Similar Threads
Thread Thread Starter Forum Replies Last Post
Final stages without feeding tube ZCare General Discussion About ALS/MND 2 08-28-2015 12:26 AM
Final Stages pscheffel ALS and FTD 16 12-10-2012 02:47 PM
Final stages and lingering almondjoy In Memoriam/In Memory of 47 04-17-2012 10:29 AM
Last stages for someone with ALS? Sunnyinsd General Discussion About ALS/MND 21 02-15-2012 10:37 AM
Final Stages? How do you know? lisaohgee General Discussion About ALS/MND 13 05-10-2011 11:24 PM
Mom in her last stages jdale949 Current Caregivers (CALS) 23 01-25-2011 01:04 PM
What is considered Final Stages? waterdreamer General Discussion About ALS/MND 47 09-26-2010 12:18 PM
Mom in final stages? palsdotter Current Caregivers (CALS) 5 07-26-2010 06:13 PM
husband in "final stages" leigh ann Current Caregivers (CALS) 41 02-04-2009 10:31 AM
Final stages of ALS digby General Discussion About ALS/MND 15 06-02-2008 12:56 PM


All times are GMT -5. The time now is 04:03 AM.

 

Who we are

"We are a volunteer-driven online community that originated in 2003. We are a resource for anyone affected by ALS and MND. We are a community of like-minded and compassionate individuals. Together we are the ALS Forum and together we build this online resource and online community."

 

Want to help?

Have you found our website helpful? Do you enjoy having a place to talk to people that are knowledgeable about ALS and MND? If you have found it helpful to chat with people at different stages of the ALS/MND journey we encourage you to get involved.

Copyright © 2016