Life With ALS.com

+    Diagnosed Aug 2005

+     Bipap March 2007

+     PEG July 2007

+     Trache and Vent July 2008

Still Living, Loving & Laughing

This is possibly the most passionately debated issue amongst people with ALS and the families and caregivers who love them.

 

There are no easy answers and this needs to be an individual decision based on a persons situation. I want to say that I respect each persons decision regarding their right and desire to get a tracheostomy and ventilator. This decision is based on many factors.

 

Having said that I want to explain where I get upset. I correspond with many people who have ALS and the vast majority have been told, by well meaning people in the medical profession, that they will not want to live with a trache & vent as they will not have any quality-of-life. They are also told that they should not burden their loved ones with their care. They are further told that it is very hard, and stressful, to look after someone with a trache and vent. This is all coming from people who have never experienced life with one.

 

Having had one since July 2008 and I can tell you it is easy to look after and you can have a fantastic life - there is quality-of-life with a vent.

 

You will have to accept your new life, but if you choose to be happy there is no reason you cannot enjoy your life for many years to come. I have chosen to not be upset about things I have no control over and to look for the joy each new day brings. Life is GREAT!

 

There is also much talk (confusion) about the fact the medical community will say you can’t go home if you get a trache and vent, you can only go to a nursing home setup to take care of vented patients. They also tell you that you have to have a professional caregiver, awake, 24/7. The cost of this would be prohibitive for most of us. All of the above is not true.

 

I want to tell you that you can go home, you don’t need an expensive caregiver and the caregiver does not have to be awake 24/7.

 

As long as you have the necessary items at home and have people trained on trache care they can’t stop you. (More)

Anyone can be easily trained to take care of a trache and vent, so you can find affordable caregivers. There is also no need for a caregiver to be awake all night as the ventilator has alarms that will wake anyone if something happens. (More)

 

Again, I want to say I respect everyone’s right to make their own decision on this, just make your decision being fully informed and with all the information possible.

 

There have been a number of people who have changed their mind after talking to me about what it is really like.

 

I know I am in the minority as there are only about 5% that do what I have done. So I have always experienced a lot of objection. But times have changed and I would like to see that statistic change.

 

There are a lot more than 5% of us that are in a position to trache and vent.