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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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Typically dialysis patients do not urinate or urinate very little, so it wouldn’t be unusual for an ESRD patient not to pee. Dialysis removes toxins that build up in the blood as well as removes any excess fluid the person with normal kidneys is able to urinate out.

I would check your mother’s pre and post dialysis weights to see the difference as patients usually go on dialysis with a higher weight and their weight is decreased after treatment. Once you see these values note the weight difference. It could be the dialysis staff are pulling too much fluid off during treatments. Dialysis patients have a “target weight” - this being the ideal post dialysis weight and is determined by several factors. Target weight is the post dialysis weight that when achieved means the patient’s HR & BP are in a good range, the patient does not have any swelling in their lower extremities or fluid in their lungs and feel ok enough to go home. Often dialysis staff are too aggressive and set up the dialysis machine to remove more fluid than necessary & if this happens after treatment the person  feels  sluggish and worn out. 

Unfortunately many dialysis patients feel worn out after dialysis anyway but when too much fluid is pulled off they feel much worse.

Also talk with your mom’s nephrologist (who should see the patient on dialysis at least once per month) to see if any of the medications you give her are being dialyzed out during treatment thus lose its  effectiveness. Many times this is overlooked. In this case medication schedules can be changed to give after dialysis to help their effectiveness. 

Is your mom on a fluid restriction? Potassium restriction?  Ask the staff - charge nurse, nephrologist or dietician, what restrictions she has. Work with them to find out your mother’s ideal post dialysis weight (target weight- see below). Help assure her electrolytes stay in balance by monitoring her intake - low or elevated levels of potassium, calcium and magnesium can cause changes in mental status. 

Every dialysis center that accepts Medicare in the US is required to have a renal dietician on staff. They should be helping you to achieve & understand the ESRD diet and will help you figure out fluid restriction amounts. The basic rule is the patient should not gain more than 2 kg between dialysis treatments - that’s 1000cc daily. 240cc = 1 cup, thus their daily limit is 3-4 cups per day. Not a lot of fluid. Plus many foods metabolize out to water - salads & fruits included and this should be considered in the restriction.

The saline bag you see at her dialysis machine is used to prime the lines or treat low blood pressure during treatment so it has duo action. If needed,  saline is given in bolus (100-200cc at a time)if the patient’s BO drops or the person gets cramps or nausea.  The person’s BP is checked after the bolus to see if BP has increased as BP often is lower at the end of treatment. 

Another rule is the standard is the person’s BP & pulse are to be checked and recorded every half hour or more for this reason as well (BP often drops as the treatment progresses). 

For reference there are many sites on ESRD on the net for education- my favorite is NIDDK (National institute of Diseases of Digestion & Kidneys) or NKF (National Kidney Foundation) These sites offer handouts you can print off for reading later.

It’s very unusual for a dialysis patient to be dehydrated pre dialysis; fluid overload is often the case. But if the patient is not eating or drinking between dialysis treatments that “target weight” discussed above needs to be changed- either lowered or increased- or the staff will pull too much fluid off and then the patient indeed can get dehydrated by the end of treatment. Low BP, muscle cramping (hamstrings, arm or leg cramps), & a high pulse rate reflect end of treatment are symptoms of dehydration. 

For curiosity I might obtain one of those urine “hats” labs often have that can be placed  under the toilet seat to measure the amount of urine mom voids. Keep a daily log. Then you know how much urine she produces and this info can be shared with the dialysis staff/ nephrologist and is considered “residual renal function”. At the beginning of maintenance dialysis treatments many people still make urine but eventually urine production decreases significantly and can cease altogether. Every one is unique and that info should be taken into consideration when achieving goals/planning care for the patient. 
Good luck!
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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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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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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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Also, skipping dialysis treatments can be detrimental as this means more toxins will have built up in her bloodstream and her body will have a bigger “electrolyte shift” than if she had dialyzed per MD order of 3x/week which is usually the  proper interval. 
It takes time to adjust to all of this. Hang in there.
Heavy metal...a girl after my own heart! Metallica? Zeppelin? That doctor probably didn’t know the band. 
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