Lscott71
Active member
- Joined
- Aug 22, 2017
- Messages
- 57
- Reason
- CALS
- Diagnosis
- 05/2017
- Country
- US
- State
- Texas
- City
- Fort Worth
My husband gets seen by the VA but they sent us to UT Southwestern to the pulmonologist to get a sleep study and orders for a cough assist and Trilogy. They are also the ones who are going to do the PEG tube. We had our first appointment there a couple of days ago.
Towards the end of our appointment he asked us about advanced directives and end of life care. I told him we had discussed it at length while he was still talking and his thinking was better and he had decided against the ventilator. The doctor asked why he didn’t want it and I told him that it was a quality of life issue. He just had kind of a weird attitude about it and started asking if we had kids (we have 2 grown kids), then if we had grandkids (we have a 6 year old granddaughter).
Maybe it’s just me but it just felt like he thought it was the wrong choice and now I’m so scared of making the wrong decision when the time comes. It doesn’t help that my mother in law thinks he should get it, but doesn’t want want him to get the PEG tube because he has FTD and she’s afraid he’ll pull it out! She’s pretty much in denial and refuses to read anything about the disease. She thinks the Lord is going to heal him, which is a nice thought, I just don’t think it’s going to happen (and I’m a believer), but that’s another thread for another day!
Anyways, thanks for letting me rant.
Towards the end of our appointment he asked us about advanced directives and end of life care. I told him we had discussed it at length while he was still talking and his thinking was better and he had decided against the ventilator. The doctor asked why he didn’t want it and I told him that it was a quality of life issue. He just had kind of a weird attitude about it and started asking if we had kids (we have 2 grown kids), then if we had grandkids (we have a 6 year old granddaughter).
Maybe it’s just me but it just felt like he thought it was the wrong choice and now I’m so scared of making the wrong decision when the time comes. It doesn’t help that my mother in law thinks he should get it, but doesn’t want want him to get the PEG tube because he has FTD and she’s afraid he’ll pull it out! She’s pretty much in denial and refuses to read anything about the disease. She thinks the Lord is going to heal him, which is a nice thought, I just don’t think it’s going to happen (and I’m a believer), but that’s another thread for another day!
Anyways, thanks for letting me rant.