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Charlotte G

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Joined
Sep 25, 2012
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2
Reason
Loved one DX
Country
US
State
WIsconsin
City
La crosse
My brother has been living with bulbar onset ALS for nearly 2 years. He just turned 64. He is trying to decide whether or not to have a procedure to prepare him for using a mechanical ventilator. He has asked his care team (at a major East Coast academic hospital/als research facility) to help him find someone on a vent who can talk or communicate with the aid of a caregiver about what life on a vent is like. His team has not yet been able to find someone, although they have tried. I have asked neurology staff at the clinic/hospital where I work but no results so far. Can anyone suggest a way to help my brother make this connection? His typing dexterity is limited, but he can still do some keyboarding. He has read extensively on this crucial topic, but wants to hear from a person, not a journal article or clinical narrative, before he makes up his mind. Can you help me help my brother find the right person to have this difficult but crucial conversation?
 
I posted the link to this thread on an ALS forum on F B. Will let you know if it gets any response.
 
has he tried patients li k e m e s i t e? I belive there is a couple vent als on there.
 
If you want the input of a past member here, read JoelC posts and the links to his personal off-site blog. He discusses many of the pros and cons.

So much has to do with your friends lifestyle, now easily he has access to care and things like that. Joel spent years on his vent. Another ember who is taki g a. Real, but jer fiancé was on o e for years, he did pass away, but it wasn't due to his venti g, I believe it was an injury.

There are some excellent videos titled often awesome that you should be able to find links to as well.
 
I am happy to share my 4 years of experience and contrast my decision with alternate decisions made by deceased friends.
 
Please have him read about JoelC. He was a strong advocate for venting.
 
I feel a little bit silly replying to my own post, but I am not sure how else to let people know my brother has decided NOT to have a tracheostomy and a vent. I was moved by how quickly ALS forum members responded to my query. Thank you from the bottom of my heart. My family is quickly changing gears to arrange for my brother to move in with my parents and receive palliative care as it becomes needed. I may return to ask for more advice from the brave, wise and selfless men and women who subscribe to this site. Again - thank you for your swift response to a total stranger whose only tie to you is this dread disease that steals our loved ones' breath and mobility.
 
You can continue posting on this thread..or others as long as you like. Its a pretty strong tie that binds us. Feel free to laugh...cry...vent..whine..drink or pray with us. Welcome to our forum. I'm sorry about your brother
 
There are some good articles on palliative care at car ing dot com. Or the national hospice site.
Please check out our forum archives for info on all matters of care.
Best of luck to you and your family.
 
I feel a little bit silly replying to my own post, but I am not sure how else to let people know my brother has decided NOT to have a tracheostomy and a vent. I was moved by how quickly ALS forum members responded to my query. Thank you from the bottom of my heart. My family is quickly changing gears to arrange for my brother to move in with my parents and receive palliative care as it becomes needed. I may return to ask for more advice from the brave, wise and selfless men and women who subscribe to this site. Again - thank you for your swift response to a total stranger whose only tie to you is this dread disease that steals our loved ones' breath and mobility.

I do have to ask if your parents will be physically able to care for him if he is 64. I'm guessing that puts them in their 80's. I can assure you, they are going to need outside help from someone.

Folks here will help all we can.
 
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