Hi, I hope all of you out there are doing well! I have a couple of questions. The time has come that his lung capacity has gone down to the point that they are recommending he get put on a ventilator. I fist want to ask if there are any words I can say to him that have helped all of you in the past? I know I cannot take away this pain but I really want to bring a piece of mind to him if that is even possible. I thought you all might have something that has helped you. My second question is he is unsure if he wants a ventilator or not. I want to help him decide but is so unsure. Are there any experiences you all might have gone through to help me out on this? should he do it? He is still using his hands at the moment but I have see those get weaker and he is the type of person who really does not like staying inside especially with this nice wether coming. Help!
Ventilator Decisions
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Nighthawk
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Hi there,
My apologies but, I didn't quite understand the term "ventilator" in your question.
Are you referring to a Bi-PAP machine or to a Tracheostomy ? If the later, you may want to consult with him about what his wishes and directives are concerning to this (in case he still can communicate, of course) because a Trach is an invasive treatment that puts a lot of burden on PALS and CALS alike. But, if you were referring to Bi-PAP (which is non invasive), then it would be quite different.
NH
My apologies but, I didn't quite understand the term "ventilator" in your question.
Are you referring to a Bi-PAP machine or to a Tracheostomy ? If the later, you may want to consult with him about what his wishes and directives are concerning to this (in case he still can communicate, of course) because a Trach is an invasive treatment that puts a lot of burden on PALS and CALS alike. But, if you were referring to Bi-PAP (which is non invasive), then it would be quite different.
NH
ottawa girl
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Is it possible for your grandpa to meet privately with his physician? All options could be explored and each explained to your grandpa.
Sometimes, for many of us, it is just plain easier to discuss these end game issues with a third party. It's a safe way of coming to terms and taking decisions. There is no expectation, tears or bias from the listener. We can let go of our guilt. Yes, guilt for putting our families through such an ordeal; irrational, I know, but its true. Such a meeting with a trained professional is an opportunity for us to really say what we want to say, but which we often hold back simply because of the love we have for those near and dear.
Amber, for me it's not so much about the going... it's about the leaving. Leaving everyone I love and cherish. Leaving my life. These are totally different mine fields. I'm certain I'm not alone in feeling this way. Maybe your grandpa is stuck at this crossroad too.
Sometimes, for many of us, it is just plain easier to discuss these end game issues with a third party. It's a safe way of coming to terms and taking decisions. There is no expectation, tears or bias from the listener. We can let go of our guilt. Yes, guilt for putting our families through such an ordeal; irrational, I know, but its true. Such a meeting with a trained professional is an opportunity for us to really say what we want to say, but which we often hold back simply because of the love we have for those near and dear.
Amber, for me it's not so much about the going... it's about the leaving. Leaving everyone I love and cherish. Leaving my life. These are totally different mine fields. I'm certain I'm not alone in feeling this way. Maybe your grandpa is stuck at this crossroad too.
momap53
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So sorry your Grandpa is reaching the point that this decision needs to be made.
There are portable vents available so he could continue to get out and about. Check out the Tri logy. I use mine for Bipap right now but it can also be used for invasive ventilation as well. I have it mounted on my PWC with. A couple of carabiners so that it articulates with my chair when I tilt And recline.
Check out some older threads in our archives for more discussions on this topic.
Joelc was an advocate for venting. Check out his profile page and web site.
There are portable vents available so he could continue to get out and about. Check out the Tri logy. I use mine for Bipap right now but it can also be used for invasive ventilation as well. I have it mounted on my PWC with. A couple of carabiners so that it articulates with my chair when I tilt And recline.
Check out some older threads in our archives for more discussions on this topic.
Joelc was an advocate for venting. Check out his profile page and web site.
Thank you so much. I know he is feeling the same way that you are. I can see it in his eyes and I can tell because he always looks to my grandma and me. We have a really big family and he is plays a big roll in it. He always does the cooking for holidays and brings everyone food, plants through the year. So maybe you are right he feels pressure but I do have conversations with him saying this is not his fault and that I am proud of him and I will support any rout he takes. I really feel that way too. I just feel like he will not be happy in a few months if he is in the vent and then he cannot move anything. I am also worried that he will not learn how to communicate through eye gaze since he did not pick up the eye pad at all.
I can definitely see what you are saying. The only thing I can say to him and my family is that this is our temporary home and that we will all be together one day. None of us are promised the next day and we are all on our way one way or another. I really do admire your strength along with all those who are going through this. I know it is so hard that is why I want to help in any way possible. Again thank you for your advise.
Deb I will look at other threads for sure and I do have him on that exact machine. Not to say that I get him to use it but he defiantly has it. Thank you for your reply!
Amber
I can definitely see what you are saying. The only thing I can say to him and my family is that this is our temporary home and that we will all be together one day. None of us are promised the next day and we are all on our way one way or another. I really do admire your strength along with all those who are going through this. I know it is so hard that is why I want to help in any way possible. Again thank you for your advise.
Deb I will look at other threads for sure and I do have him on that exact machine. Not to say that I get him to use it but he defiantly has it. Thank you for your reply!
Amber
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