What to expect on a vent?

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sarahg

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Joined
Mar 3, 2012
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6
Reason
PALS
Diagnosis
10/2010
Country
US
State
New Mexico
City
Albuquerque
I'm at the point where I'm using my BiPap most of the time. I recently decided to go on a vent when the times comes. I'm happy with my decision mostly because at one point i really wanted to die. But at the same time, I'm also scared of being on a vent. What do I expect?
 
Hi Sarah. Good to hear from you. I think Diane is the only PALS here that is currently vented. Her website is alsfrombothsides
We also have a current CALS and a former CaLS whose PALS vented
You would find more vented PALS in the facebook PALS group I think. If you are not a member you might want to join
I hope you will hang out with us too though!
 
I can't begin to put all my experiences of being on a vent into a reply here. What to expect? Expect to feel better and live longer! But recognize that a vent will not slow the progression of ALS. Please go to my website at ALS: From Both Sides where you will find information on vent life -- the good and the bad.
 
Hi Sara,
To vent or not to vent is is a highly emotional and much discussed question.

To find the (numerous) earlier discussions click the main (NOT the Search this thread) Search link at the top of the page. Select Advanced Search.

In the new Search window "vent" into the keyword box (do not put the quote marks in) and select "search titles only" beneath the keyword box. Now click the Search Now button at the bottom.

You will also want to view Diane's site as Nikki suggested, as Diane has been exactly where you are now.
 
A vent is probably wonderful if breathing is the only issue, but once it progresses to a certain extent, it is just existing and and extreme burden on the family/caregivers. Plan carefully.
 
I am considering the vent. I want the proviso that when I can no longer communicate with my family, then give me the morphine.
 
I am a newbie to Facebook and don't understand why I can't cut-n-paste in certain windows when on my iPad, so I had to do a screen capture.
Here is one gents take at a 'vented' Final Directive.
 

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Thanks, Greg. I copied it.

In what way is hospice preferred to finishing at home?
 
Graybeard, you CAN remain at home with hospice. Yes, there are some outside hospice centers but you have a choice. Our daughter was a hospice nurse and spent many hours in the homes of her terminal patients. She has many beautiful stories about the endings for them. We had thought my Joe would be in hospice at home with all of us instead of in a hospital. But we didn't get to choose? Hugs to you. Donna
 
GB, as Donna says, most hospice care is delivered at home and that is where most hospice patients die. Think of hospice as more of an adjective than a place. The focus is palliation and a more peaceful exit. But while "hospice" can be administered by a family or an agency, the ultimate project manager should be the patient.

When my husband began to experience air hunger on 24/7 BiPAP, we obtained morphine and other scripts via our PCP and filled them as we would any other prescriptions. [Given the diagnosis, any doc that has seen you within the last year is well within professional scope to do that. There seems to be a myth in some quarters that only hospice can write morphine.] We then administered these rx according to my husband's needs.

He died a few days later, having used that time to say goodbye to the people he cared about most. If he had been unable to communicate, we still would have known what to do because we had talked about it. That is the conversation(s) that I am hoping every PALS on the Forum will have with anyone that might be standing next to your bed, and I know, GB, that you will have it with your wife. And that is your own best hospice, whether you end up working with an agency or not.
 
Just reading through the posts here just a few thoughts from our experiences with vent the last 4 months:

When is it considered unable to communicate? Mom can wiggle her eyebrows for yes, and I honestly can see her being able to do this for the forseeable future.

Plans change. Mom's original plan was to come home for a few weeks, say goodbyes, and then call hospice. Never underestimate the human survival instinct!

Plans change. Mom never even wanted a feeding tube in the beginning.

Advance directives can be changed with a nod. Mom's POST form said NO LONG TERM VENTILATION. We were at the point of needing long term vent. The doc asked if she still wanted to stay on the machine, she nodded, and it was case closed.
 
I can't begin to put all my experiences of being on a vent into a reply here. What to expect? Expect to feel better and live longer! But recognize that a vent will not slow the progression of ALS. Please go to my website at ALS: From Both Sides where you will find information on vent life -- the good and the bad.

Diane - I am in the midst of reading your website. It is fabulous. Thank you for writing it. My husband is slow progression as well so this is insightful for both of us on many levels.
 
Likewise, Diane. I wasn't considering a vent until I read your site. Thank you.
 
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