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So, my mom has end stage renal disease and is on dialysis. I just had her designated "palliative" at the beginning of the month. She has been unwell all week - I even kept her home from dialysis on Wednesday.

Today I sent a note up to dialysis with mom telling them she was very sick and confused, and very dehydrated. I suggested that maybe she needed some fluids. They have done this once before, under the nephrologist's orders, after I took her to the ER. She was quite a bit better after having a saline drip while on dialysis. Today one of the nurses phoned me back and said there's nothing they can do, and that I needed to take her to the GP and get a referral to geriatric psych. I asked how psych was going to help with her physical issues....the nurse just repeated there was nothing they could do and that I had to go to the GP and get the geripsych referral, and get some meds for her dementia.

I went to the GP's office to get an appointment. She is on holiday till April 4! I could get an appointment with the other doctor but not until March 26th. They said they'd call me if they have a cancellation next week - which they will; they're pretty good that way.

Mom is really whacked out right now, all week. She can't even get up on her own, she has no idea what's going on. I don't think she's pee'd in a week. She's had huge, thick bowel movements where normally she has loose stools - she sh** all down the front of the toilet once, then didn't clean herself, and got back into bed covered in feces. She was totally unresponsive when I tried to help her get her coat on this morning. Like not even hearing me the 12 times I asked her to put her arm into the sleeve, and when she did hear me, completely not comprehending me. She grabbed my sleeve and pulled on it when I was buckling her into the car. I had to guide her through every step of getting into the car, very slowly, right up to "put this hand here, put that hand here...." She doesn't even understand getting into a seat.

I know she has dementia but this is above and beyond where she's normally at. Does this sound like normal dementia, or does it sound like dehydration? Part of me thinks the nurses just didn't want to call the nephrologist on the Friday before Spring Break to authorize a saline drip.

Anyway, when I go pick mom up from dialysis, I've already decided I'm wheeling her right down to the ER for a hydration assessment. I cancelled this evening's home support. I just wonder what you all think? I'll have my phone with me and I'll check in here....

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Good morning Dorianne, it has been a long night for you. I'm sorry the ER doc was such an a-hole, sounds kinds like the one who told me "sometimes they just get tired" when I took mom in 5 years ago and had me convinced she wasn't long for this earth. Dismissive a-hole. If we had a better way to get immediate care and attention from our own docs we wouldn't waste time in the ER, but what else can we do when we're scared and feel something is wrong? You are doing great, don't let anyone cause you to second guess your decisions..... I hope you are both able to rest today.

Shane, thanks for the crash course in dialysis, I learned a lot.
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ER, wheel her over there.

" I can't possibly care for her at home in this condition" you can stay by her side round the clock. But not know what to do.

Stand strong, Dori. We're here when you need us.
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I expect they are trying to rule out a stroke Dorianne... hopefully it is just a precautionary protocol. I'm glad they are taking things seriously and investigating every possibility. How is she - and you - holding up? ((HUGS))
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Dorianne, after that bowel movement incident did the ER check her for a UTI? I understand with all of her dialysis medical history they may check for that regularly. My mom with dementia does become more demented quickly with a UTI. I hope she clears up some. Sounds like you are a great advocate for her, never mind the judgment by the doc; it would have made me mad, too!
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Dorianne. sounds like a good idea having the hydration assessment. At least then that way you know if Mom is dehydrated or if the dementia has moved into another direction. Keeping my fingers crossed it is something as simple as dehydration than can be corrected.

Let us know what happens.
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cwillie - I didn't really realize it about the peeing till after the renal nurse got my hackles up by not wanting to deal with her dehydration. The dialysis unit is full of nurses but the nephrologist (doctor) is not always on site, and usually on call.

FF - just waiting for mom in the ER now. I asked the renal unit to wheel her down here after dialysis.
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Mom keeps asking me why we're here. She is tired. Confused. Keeps cutting looks at me. They just took her again for the CT and xray as they discovered she can't stand....which I already told 3 people....so they had to wait for an empty stretcher.

I am dying of heat stroke in this place. It's very warm! And I am near menopause. Already took off my wool socks. Depending how long we are here, I might be in my underwear at some point!
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Have they catheterized her to check urine? Ureter blockage? Even though she is in palliative care I would think with her kidney status they might need to admit her at least for catheter placement. Many times in end stage kidney disease they place a catheter so they can measure urine output and urine color.
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Becky - I believe it's on their list. It was mentioned.

Shift change in 20 minutes. Hope we don't have to start from the beginning with the night crew.
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Dorianne, keep us posted. We're here for you.
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