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I'm still in a holding pattern. Mother is late last stage dementia, immoble, wordless, and has to be fed and changed.


3 weeks ago or so, mother's hospice team was barred from entering her care home since they had treated someone who tested positive. Hospice aide had been keeping a pressure sore from developing for a couple of weeks, but the home was not able to stop it.


The nurse has now been allowed back in to check mthr & bumped up her pain meds to methadone since it's a liquid. Mthr was crying out in pain when she was shifted since her sore is on her behind. Last weekend, the home called the nurse for antibiotics since mthr was running a fever. I pointed out to the nurse when I talked to her, that mthr's advance directive calls for no antibiotic treatment so that's been discontinued. I expect that whatever bug was causing the fever is gone since it was a week ago and there won't be any decline from stopping the antibiotic.


Mthr is taking in more calories now that she's getting Ensure, but still weighs in the 60lb range. They will insert a catheter so she is not urinating into the sore and causing more pain. My hope is that she will be able to ease into the night with the increased pain meds. I'm so sad they treated her with antibiotics! How long can a person have a well treated bedsore and keep ticking? This is new territory for me - it will be 8 years in June that I've had mthr under care.

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surprise - keeping you in my thoughts as you're going through the difficult end stage. Here's hoping it'll be quick and painless.
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surprise May 2020
Thanks. Waiting for the first shoe to drop.
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Our hospice social worker called me today to see how I was doing, and I immediately asked if mthr had passed. She found out what the home's nurse told me yesterday about death being imminent and called the hospice nurse. My hospice nurse tells me that it will happen in the next two weeks and possibly over the weekend but unlikely. I found out way more than I wanted to know, like that last week mthr was moaning and when they shifted her they could hear her bones creak. That mthr is aware currently, and moaning only when they move her even through the methadone which is commonly used for bedsore pain control at the end of life.

And the wound really stinks (they put out coffee grounds to control the smell). I'm really glad I did not go over before hearing this report. I know these people don't know my history and I don't feel like sharing with the care team (for those of you reading this in shock that I won't visit her as she dies, my mthr abused me and tortured my dogs. Ok, that's not the half of the abuse. But you get the idea.).

My husband and I are both at high risk with Covid and are not about to go out for anything - we already turned down a visit from our out of state grandchildren. So many reasons not to go. Nevertheless, I feel terrible that the nurses and staff have to clean the wound and see her suffer and smell that smell. I feel bad that anyone would die like this, but she's the one who wrote the advanced directive.

I have to wonder if God chose to take her out like this for a reason. I don't mean to sound cold, but her suffering reminds me of a specific incident. Perhaps this is that "Karma is a b!tch" playing out. I am sad because I had to suffer back then and I am thinking of it again and of what the nurses are going through tending her. Just yuck. Thank you all for your kind words - this is really helping me keep my upset from the kids.
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MAYDAY May 2020
It sounds like stage 4 bedsore?
ativan will help her brain with the pain too. Morphine and ativan was the the emergency pack given by hospice. Perhaps, give her ativan.. to help out..
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Great big warm hug!

I pray that she can pass peacefully and not linger for months.
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surprise May 2020
So that is a possibility? I have no idea how much she will be awake on the methadone. I really hope she can sleep it off. I suspect that once the word is out in her home town, a forged will surface. I'm not looking forward to that.
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I just saw this post about your mother’s status. I know this must be so painful for you to endure. It sounds like hospice is keeping your mother comfortable, though.

I think you and I are very close in details about our LOs condition, except for mine, she’s my cousin and it’s been 6 years. I don’t understand how it’s possible for people who are in such declined state continue to live. I do feel for you.

How long has your mother been on hospice? How is her breathing? I talk weekly with hospice to discuss. Can they tell you much about what to expect. They tell me they just don’t know. My LO has been on hospice and in a very declined state, as you describe, except no skin breakdown for 18 months.

I’ll pray that there will be a peaceful passing. Take care.
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surprise May 2020
Thanks, I don't know how I missed replying. She went on hospice about 9 months ago. She was gurgling yesterday but nurse said she sounded better today. I think the care home gave a graver picture to get me out before she loses consciousness which hospice said would be this weekend. I'm not going. I needed the support you guys are giving me here. Thank you so much.
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Had the call from the care home today - mthr is in transition. I'm having mixed feelings, sad that she was not a nice person, glad it's almost over. My kid was disappointed today on something he worked really hard on and it's hard to see him sad. I'm waiting for instacart to bring me Nancy Pelosi's favorite ice cream.

Do you guys think it's ok for me not to go over there? I already told the director that I knew she was not there anymore. I know it will smell bad since her wound is draining a lot and she's septic. I just have had enough.
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polarbear May 2020
I probably would not go if I were in your shoes.
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Surprise, I think you need to do what feels right. I had no desire to see my stepmother before she left our state to move to live with her sister. My bro was very angry, might be the last time before..nope, dude.made my peace with our relationship years ago. Not a nice woman. Narcissist that had affair with my father and gaslighted my mother, her supposed friend. Focus on your son, it’s a gift that you arranged care for her for years given how she treated you. My PTSD would not give me peace if I did it. Take care of yourself and this is perfect time to remove self and protect from exposure...
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surprise May 2020
There we go. That is the perfect reason and I had not formulated it yet. Yes, I would have more PTSD if I went to visit. Getting her room cleared out will be tough enough. I'm thinking of hiring a young man I used to teach who lives close to the home just to get the furnishings and donate them, while separating the photos and postcards for me (I sent them). We own the hospital bed - I don't know where to donate it. Ideas?
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Surprise...huge hugs coming your way! I hope your mom has a quick and peaceful passing. All you have been thru with her and others....hopefully you can put this all behind you quickly. Take care of yourself please and know that we all care and are thinking of you each day. Liz
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surprise May 2020
Thank you Liz - even the administrator of her home said she was a tough old bird, that they'd had her 8 years and most dementia patients don't last that long total, much less once they are to the dementia stage where she was when she moved in and stage 3 cancer! I don't want to let this disrupt my happy home since I've just had enough of that my entire life. I'm sad that my story is so sucky in relation to what she should have been, but I could never change her and goodness, I tried. Only when I gave up trying could I move forward.
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Surprise, I am sorry that you are going to be facing more hatefulness when she dies. It never ends with her does it?

Yes, I think that she could sleep it off on methadone. I have seen people pie eyed wasted on that stuff. They just kinda didn't care or know anything, very contented and chill.
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surprise May 2020
That sounds absolutely wonderful. Thank you for that glimmer of hope!
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((((((((((HUGS))))))))). Love u and hoping for peace.
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surprise May 2020
Thank you. Still waiting. I thought I'd grieved not having a mommy but I'm sad and mad (again) at the same time. A cousin found me recently on facebook and her brother, my mthr's close buddy when they were young and who walked me down the aisle. He wants to talk to me, but I've been putting it off 4 weeks. I see no point in calling until I can say she's gone.
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Surprise -
What a trying time you are having. Take care of yourself, be kind to yourself, and know that people here are thinking of you. (bighug4you)
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