I believe everyone has given you a very honest as well as very understanding response. @clibbers1 will be closest to my response. You might remember my mention of it in the past.
I can honestly tell you that I would have been fine and with the exception of not being here for my daughters and grandson, actually welcomed whatever comes next. I cannot say how your mom would feel, but I was very tired. I am still very tired, of fighting to make life better, and easier to deal with the day to day.
I have recovered very much, but am in no way near what I was before. Some of that is great, some of it not so good. I hate to be honest right now, because someone will likely come along to chide my lack of fighting spirit as depression. It isn’t at this point. It is more of a yearning for something I think will actually come later, as well as a fatigue from almost 60 years of fighting for a good life. My life has been filled with love, but the effort has worn me out. I am happy with what I have done in this life to accomplish the care and love that have always been important to me.
I was intubated for long term twice, and short term with some surgeries. It is very unpleasant, it is very scary, and for me, it was painful, possibly due to the damage it did to my pharynx and vocal cords. After the first time I nearly signed to disallow further intubation until they told me I would not be able to have the surgeries I needed if I signed it.
I am certain, when they removed it a second time, had I not been able to breathe on my own with only a little trouble (could be controlled with oxygen mask or forced oxygen- can’t remember what that is called), the doctors would have cut off another try regardless of my family’s wishes. However, my family understood, I did not like intubation and did not want it further unless absolutely necessary. The inferred, correctly, that for surgery I was willing, but I did not want to be vegetative, or ‘locked in’ (here thinking and feeling but unable to move). I realize there are many people who live like that, and actually have lovely lives, but I have had enough life to know, I likely wouldn’t be one of them.
Your lovely mother has an awful lot going against her. The plural strokes, the MRSA, the intubation, appears her kidneys may be shutting down or she has infection in the urinary tract? My guess is she is becoming more and more tired. I did also go through 16 bouts of dialysis. That is long days that are so draining, the fatigue is not even comparable to the extreme fatigue of stroke, which is already horrendous. I wouldn’t want to do that again, so there would have to be a good chance the kidneys would work again before I would allow it.
I am trying to give you a picture of what it feels like to actually experience these things to actually give you an idea of what you are asking her to deal with.
All I can do is cry while I am typing because I don’t want to say these things to you, and I don’t want you to feel the hurt, pain, sadness, but no one can stop that for you, no matter how much we all want to.
When they remove the intubation next we, I hope all decisions are made for you, so you never have to look back and wonder if you made the right one.
The only way that will really happen is if she fails to breathe on her own, or she does breathe on her own and hopefully begins responding in other ways. She likely won’t be able to speak for a while.
I am sitting here, reliving the times I have sat with someone who is passing, trying to find anything helpful for you, if she does not breathe on her own. As in everything else, everyone is different, but most often the last breath almost seems like a sigh of relief. If that happens, and it will at sometime, you will never be prepared for it, so don’t bother trying.
But what you will be is able to muddle through, able to navigate this world even though you would prefer to do it with her. You will be okay. You will figure out how to do what you need to do at the same time as being who you are.
I don’t know exactly why I feel some kind of kindred with you, perhaps your young age near my own daughters, your mom’s similar struggle as my own, but I do feel it. I just want to hold you as I would one of my daughters, in a long, loving, warm hug and assure you it will all be okay. And it will. No matter what happens-Nothing will be the same, but it will be alright.
