my thoughts

[Barbie]

talked with the RT yesterday at the house bout husband's trilogy and what it all means. he said he was doing well on it. she asked me about a trache for him (he was in the shower) and I told her that I didn't know what he would say, but what my stance was on it. it made me get a little teary eyed talking about it with her. Basically--he always said no but now he is saying maybe--but I say that I will not be his caregiver in that event. So I am the bad guy in his scenario--the thing is he won't even say yes to a peg!
Anyway, the RT said that she believes that his breathing will not be what does him in--it will be his weight/nutrition at this point. not that she was an expert, but as weak and thin as he is it is what she has seen.
I know this is a very polarizing issue, but I just can not imagine being completely paralysed and dependent on someone for every single thing--not able to do anything for yourself and being happy also having a machine breathing for you. To me--that sounds horrible. and even more--it sounds horrible caring for someone like that. I cant do it and I won't do it. I need to relax, but this has me all worked up because he wants to leave that option open. It isn't even something we have to deal with right now, but just thinking about it

 

[affected]

I totally get it Barbie.

I will never forget the day after Chris found out about vents and told me that he was going to be the longest living PALS in the world ...

We were so lucky in my view, that this decision was taken from us as they will not vent PALS in Australia, end of story.

I would never accept a vent for myself, and I could not have given years of care to him bedridden on a vent and remained sane in any way. This all happened well before the story of Santa Joe unfolded and the honesty from Deb during that time only confirmed for me everything I felt at the prospect of it happening here.

Does he have a living will that states anything about venting? If so I would be using that to stop the conversations continuing in that direction. I think that in any conversations that are started with your hubby there, rather than stating you won't do it and appearing the bad guy, how about you make a list of questions to ask in front of him about the need for 24/7 care, costs of this etc Maybe make it sound more like you need to know how this could even be made to happen, rather than your personal opinion?

hugs Barbie, I often think of you and wonder how you cope with the many years this has taken your lives over

 

[JimInVA]

Barbie,

This is a dance that we're in. As caregivers we will attempt to do most any thing that we can to make our PALS comfortable and cared for. And we're quite glad that we can do so. But, ultimately, it is still a dance... and it takes two to make that good dance happen. If you don't keep yourself physically and mentally healthy, then you're unable to lead when you most need to. As unselfish as I attempt to be for myself and for Darcey, I have to admit that I'm glad she has agreed to no vent. I've only been at this for 2 years... but some days it does seem like a much longer period than that. I only hope that I can be as strong as you have been through the many years. You have my warmest of wishes and best of thoughts...

Jim

 

[cheerleader]

Jim, ditto, ditto, ditto!

 

[dalvin]

Barbie, just want to say that I'm with you on this one. Can't imagine living for years totally dependent on others or expecting others to go through what a caregiver would have to like that

 

[Schmidhogan]

I agree with Dalvin. When I can no longer wipe myself (just got a bidet toilet seat so maybe this problem won't arise) I will be hoping to soon check out. While ok for the few that maintain mobility, the way I'm going a vent is out of the question.

 

[gooseberry]

Barbie, I am so sorry you are even having to think about this right now. U fortunately, I think as our pals progress thru this disease, they change their minds about a lot of things and dont always include us in the decisions. You know what what you can do physically and mentally, you have already done so much. If you cant do this , no matter the reason, then you shouldnt. I know I cant. Steve is also reconsidering this decision. I have told him the same thing, I love you but I cant do it. Hugs to you Barbie.

 

[Barbie]

Schmid, I don't mind wiping his butt and I don't think your caregiver will mind either! that is a little thing actually, though it seems big to you before hand, once it happens it is like "so what".

 

[JimInVA]

Agree with Barbie on the wiping issue. It simply is not a concern. In fact, there is reason for great celebration when such moments are regular and repeated on a daily basis. I spend much more time helping her eat during meals... and even that is not an issue...

Jim

 

[MaxEidswick]

>(just got a bidet toilet seat so maybe this problem won't arise)

best thing since canned beer. it's getting on/off that is becoming the problem :-(

 

[Graybeard]

I was told that Kohler makes a combo bidet/toilet.

 

[rosec]

Barbie, I completely understand your situation. I can't even imagine having to deal with everything, including the additional time, effort, and cost involved with having a vent when someone is already dependent on others for all their needs, 'activities of daily living' in insurance speak.
I agree with many who have said about how our PALS's position on what is an acceptable quality of life changes over time as the disease progresses. My PALS used to say that he loved eating so much he wouldn't imagine being fed through a tube. Now he is 100% dependent on it. But he is still sure about not having a vent.
It is a tough call, when you want to give all the care you can, and your PALS is wavering about venting which can take the care-giving to a completely different level.

I hope you and your hubby have the strength to make a prudent decision together.

 

[azgirl]

I agree with Dalvin and Max both. Don't want to put my husband and children thru the vent procedures (although they don't agree with me right now) also I don't want to prolong this nightmare when it gets to that point.

 

[rosec]

>(just got a bidet toilet seat so maybe this problem won't arise)

best thing since canned beer. it's getting on/off that is becoming the problem :-(

We bought an Etac shower wheelchair. They have fixed height and adjustable height versions. It will go over the commode, and yes the water will still reach you

 

[azgirl]

I agree with Dalvin and Max both. Don't want to put my husband and children thru the vent procedures (although they don't agree with me right now) also I don't want to prolong this nightmare when it gets to that point.