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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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Thanks shane! Lol, I feel like I know very little, to be honest! This past year has been a total crash course in experiential learning for me. Don't know about reducing treatments though. I've let her miss a couple when she feels sick, because she's palliative, but I think it makes her feel worse in the end.  (Edit:  most of the nurses are very young - the young women nurses seem to be the most arrogant when they speak to me!  So I don't think they "get it" much at all.  The young male nurses - there are 2 or 3 on the renal ward - and older women definitely seem more empathetic.) 

cwillie - Thanks for that. I think the ER doc probably relented a little when I gave her my most earnest big-eyes look and said I just felt in my gut that something was off. And I wasn't going to wait till March 26th or whenever the GP's receptionist said I could get an appointment to investigate. (I'll still be following up.)

ksordh - yes, the last thing they did was check for UTI. I give the doc credit for being very thorough, despite doubting me. I don't think that is checked by the renal team - they only check her blood (though infections can be tracked that way too, I guess).
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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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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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The “challenge” issue....wonder how the dialysis team would like to feel like a wrung out dishclothe for a few days, as that’s how long it takes to recover.

My best to you, my dear. I did dialysis (both hemo and PD) for many years...PM me if you ever need another ear.

I admire your knowledge base. Like you have been doing already, continue to offer a diet supplement high in protein. Maybe since she is now under palliative care and if her fluid gains are low her doctor will consider decreasing her treatments to twice a week. 
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Appreciate the info, Shane!

Mom's been on dialysis for about 5 years.  She got switched over from peritoneal dialysis to hemodialysis last spring, when I discovered she was not managing PD at home safely anymore, and was getting confused about managing the process.  I wasn't staying with her then.  (In retrospect, I probably should have just started staying with her then and setting her up myself, because it wasn't as hard on her as hemo.  But then I would have given up even more of my life to do that 7 days a week, so....six of one, half a dozen of the other?) 

Mom is no longer on any restricted diet, because of her dementia, as she will not follow it no matter what I do. She'll just not eat! I met with the whole renal team, including the dietician, and it was agreed it was not realistic. The most nutritious thing she eats all day is a special high calorie/high nutrient smoothie I make her, and then nag her to drink! And then she'll mainly eat crackers, and/or cottage cheese, and/or Timbits. Anyway, because of this, they often add or subtract supplements to try to compensate for her diet. (Like....she has to take calcium whenever she eats, because it binds to phosporus so it can be dialyzed out.) The nephrologist believes her poor nutrition is partly what's contributing to her accelerated dementia....she called it "metabolic derangement." (That's when I started making mom drink the smoothies.)  And there's really nothing else to be done about it, short of force-feeding her via tube (which is not going to happen on my watch).

The dialysis team has been aggressive in the past - they call it "challenging" her - which mostly caused her to crash. After I reported mom was sleeping 24 - 36 hours at time between dialysis - and especially after she started falling all the time - they (eventually) decided not to challenge her anymore.

I had all her meds switched to be taken in the evening and at bedtime, so they can't be dialyzed out.

Mom is not only worn out after dialysis, she's recently started having delusions (that she was kidnapped by the phone company and taken out of town!), which last for a few hours afterwards.

That said, I actually think at this point, she feels BEST after dialysis - she's most alert/awake, even if she is loopy for awhile - and loses all her steam the day after. On the 2-day break, she is at her worst, physically speaking.
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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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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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Home now. Exhausted. Nothing found. Doctor's final answer: dementia. It can indeed be accelerated phenomenally with dialysis and kidney disease. Also she's probably so catatonic during the day because she's so often up all night.

By that time, the doc said she'd read mom's file. (Gee, really? Finally?) And her tune towards me changed, like a 180. Started talking about what an amazing job I'm doing, how great it was that I'd moved in to take care of mom, how I drove her to dialysis 3x a week, and so on.....oh yup, Doc was all smiles now!

I'm kind of MORE mad now. Because that makes me think it's not just the doctor's bedside manner, it's that she totally prejudged me! She godd***ed pre-judged me, 100%!

Maybe it was the heavy metal t-shirt.

Seriously though. What kind of ER doctor are you if you go around pre-judging people in the ER? Hi! After I got mom out of bed, out the door, and to dialysis (all while she was practically catatonic this morning), I was running around doing the shopping and errands all day....the ones I couldn't do earlier because mom was SICK all week, and the hospital bed arrived and I had to get the old bed out, and mom sh** the bed and the bathroom floor and half her clothes....and you have an obviously more expensive haircut than I, because you're a doctor and I'm a caregiver drudge whose friend cuts her hair for free, and I'm dressed in a hoodie and yoga pants and a concert t-shirt and no makeup or Spanx on a weekday, because it's what's clean and comfortable and WHO CARES WHAT I'M WEARING TO GO TO SAFEWAY. Am I supposed to dress like Kate Middleton just to get a modicum of respect from the EMERGENCY ROOM DOCTOR?  'Cause believe me, I've got the clothes....it's just that they're all back at MY house.

I wonder what else is in that file, 'cause I've not seen a change in attitude like that in a long time.  I'd like to make my new wardrobe out of whatever's written down there, thanks. 
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I've never seen her before and I've been coming to this ER for 22 years.

Edit: it's a small town. 90,000 people.
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It would be interesting to know how long she’s been on duty.
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I just heard a patient in another cubicle complaining to her that he wants a different doctor because of her attitude.....

Edit....he says she talks to him like an animal and can't be nice and she's like that every time he comes in.
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Well the ER doc was just in and was kind of rude to me. Like, "Why are you even here?" rude. And after I explained, she told me that mom's hydration as a kidney patient is up to the renal unit and they don't have the "luxury" of playing around with it here (in the ER). Then she basically said it was my job to constantly remind her to drink because of her dementia.

Wow that was ugly. She put me on the defensive the minute she came in.

She just came back in and said mom seems pretty aware to her. Why? Because mom was aware she was a doctor and not a nurse. WTF, doc, elderly people are feminists too.

Anyway her scan and xray are fine. Her blood levels are fine, probably because she was just dialyzed. Mom has to give a urine sample yet, and the doctor is going to check with the nephrologist. But it doesn't look like anyone is going to do anything.
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Dorianne, keep us posted. We're here for you.
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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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Dori, Take care.
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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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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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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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Sooooo....they just took her for an xray and CT scan. They must be looking for a head injury?
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Thanks Barb....I will say that if it comes to it.
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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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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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She hasn't peed in a week! Are you serious? That sounds like total renal failure, do you not have access to doc/nurses through your palliative care team? I would call them in ASAP.
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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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