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Really searching for information to better help her the state will not let her come home so we can take care of her "we dont have the skills " although we have all learned trake care, wound care peg tube feedings and have tried our best to communicate with her i do believe she is maybe understand some of what we say but mostly she just stares at us. She is nonverbal and has some use of limbs but definitely bedridden. Will she every be able to communicate with us . She is doing the eye avoidance thing life drifts in and out . It takes us to put our hand over her eye then she brakes loose but will go right back into it. I do think that the dementia from UTIs is definitely a factor she has had so many i can't keep track. I just keep praying that finds peace with our father God some day

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She is so young! I just can't imagine living the rest of my life like this. You won't like what I am going to say, but I would call in Hospice and let her go. If the peg tube and trach were put in to get her "over the hump" was one thing, but now it seems they are the only things keeping her alive. The UTIs, if she is catherized this can be causing the infections. Your Mom has no quality of life.

I am so sorry.
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Your Mom is really living only due to heroic intervention of artificial interventions to ensure she receives nourishment. Otherwise she seems bedridden, with assistance of trach to breath and almost in a state of "locked in syndrome" in which she may hear but may or may not understand and can definitely not respond.

To my mind this is a living ongoing torture and is the reason I, as a retired RN, have long had written into my advance directive that I will under no circumstances allow artificially delivered nutrition. There are many things worse than death. It seems to me--for me it would be--one of them.

Be certain that you do not stand at the side the stroke most affected when speaking to her. She has not so much and "eye avoidance thing" as she has what is called "neglect" due to her stroke. Look up "neglect due to stroke". If you stand on that side you are as good as non existant to her. She cannot see, hear to react to you in any way as to her you don't exist, nor does anything at that side of her body.

I am very sorry for these circumstances. Infections are a certainty. One may lead to sepsis and death. I hope when/if this happens you will be able to see it as a blessing and a release for her, as this is not a quality of life that many of us would be able to wish for, nor want to endure.

I am again, so very sorry. Your mother is where she belongs, in 24/7 qualified care by several shifts with several persons each shift caring for her.
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Prayers of support for you and your family.
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