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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.
 
L, you shouldn't be in the position of "making a decision when the time comes." He's made it. Make sure he has a duly executed advance directive specifying what he does and does not want. Then be at peace with him for whatever time he has, under the terms that he laid out.

It does not matter what the doc or your MIL think. They are not the patient. Your husband would not want you agonizing over his wishes -- that's why he expressed them in the first place.

Best,
Laurie
 
I am so sorry that you are in such a difficult position.

With that said, I am also so grateful to read you discussed his wishes when he was still able to meaningfully express them.

As a PALS, I will relate that it is my sincere desire that my wishes be fulfilled, regardless of what other well-meaning folks might think is better for me or for them.

I encourage you to honor his wishes, even though he may no longer be able to communicate them (or even formulate them now that he has FTD).

I can only imagine how difficult it must be for you to hear the thoughts and urgings of others that are contrary to what you know he wants.

Steve
 
I can't be more clear in agreeing totally with what has been said - this is not your decision at all. Your husband made the decision when he had full faculties to do so. Your job now is to ensure his wishes are carried out. You can always be very firm in knowing that you honoured him right the way through.

That's exactly what those legal documents are designed for after all xxx

I too am so very sorry that a doctor could start making your doubt that, let alone anyone else.
 
Thank you all so much!
 
Were I aware that I had FTD, I'd have made the same decision as your husband.
I've made it clear to my wife and PCP that I'm FOR getting a trach and that if I get FTD all bets are off.
 
I had the exact opposite reaction from the nurse when I got my RIG done. He felt the G-tube was as far as one should go. His comment was;"You don't want to get a trache, you just wind up trapped in a meat suit. This from a nurse, who gets the majority of training in being supportive. The decision ultimately his. Having said that, I know a family physician who has had a trache for 5 years. Are things very difficult? Yes. But he still contributes to the Client Services council for ALS Canada, and lives as full a life as possible.

Vincent
 
It was inappropriate for the doctor to foist his opinion on you when it wasn’t asked for (sometimes they do that through their body language, but it is still inappropriate). You did the right thing in stating your husband’s wishes based on prior discussion with your husband. It sounds like the doctor bullied you into making you question what shouldn’t even have been a question.

It is so mportant to have advanced directives and other such documentation in place early in the game. At least you had had the prior discussion with your husband. Unfortunately the doctor is the problem here. Sorry you had to go through such awkwardness.
 
Greg I don't think that link has anything to do with OP. Maybe you didn't quite see that as there have now been quite a lot of replies :)

This is about honouring the wishes set out in an advanced health directive. The PALS now has FTD and the CALS is following what her PALS wanted. That's what this thread is about, not whether anyone may or may not wish to consider a trach.
 
Greg I don't think that link has anything to do with OP.

1) it's an alternative view, for future viewers
2) perhaps you didn't see my first reply.
 
Great thread.
Why say what ya want if they are not listening.
Stay strong L honor your pals
Also great blog by Diane
Chally
 
My husband has a trach, he's been vented over 7 years now. That was his choice. If his choice had been no, then that would have been his choice. None of us can assume what another would or should do. You've had the discussion, tell those who want to stick their nose in, that it's not their choice to make. If and when they might need the same intervention for whatever reason, then they can chose differently.

As a CALS who has had to care for her husband, I would made a different choice than he has. However, asking him now if he knew then what he knows now, would he have made a different choice, he says no. We have to respect them for who they are and what they want.

Hugs to you as you work through this, it should be a non issue.

sue
 
I firmly believe it's the PALS choice. Unfortunately, that choice involves more than just wanting or not wanting to continue life. It involves finances and people who are willing to take care of the PALS for an indefinite period of time.

I don't think I have that choice because I don't have the support system necessary to give 24/7 care after my money runs out.

I respect the PALS' decision and I'm sorry the doctor made you feel bad.
 
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