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I agree you need to know when her meds are changed and she deserves better than that. She is paying the bucks. Poor communication for that long is hardly excusable. It is their modus operandi.
It may be more than poor communication if they have no procedure in place to monitor the effect  of the dosage change on your mum and to take into account what you have tried to convey to them which is that your mum will people please and not show them how she is feeling. They need your input to properly assess her. This should be built in by now IMHO.
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I don't know if it was this thread i commented on this subject. there is a growing trend in long term health care to reduce any and all medications as a cost saving measure. on top of that there is pressure on all drs to reduce the amount of narcotics and psych drugs prescribe. naturally there are two sides to these decisions. When I broke my elbow i was prescribed 6 whole tablets of oxycodone. Fortunately my PCG prescribed another 20 which I did not finish. patients have the right to have their pain properly controlled.
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Veronica, in the State of Connecticut, and elsewhere, there are regs in place to make sure that elders are not being chemically restrained by meds. I get that. Most elders should not be over medicated.

My mom's dosage of Lexapro was increased, and did the trick, when she thought she had leprosy. We tried redirection, taking her to docs, etc. Nothing but meds helped.
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Barb I was not advocating the chemical restraint of the elderly. I was just commenting that needed medications are often with held as in your mother's case. There is nothing wrong with trying to lower the dose of something but it should be carefully monitored to be sure the patient does not still need the higher dose. Your Mom obviously needs the higher dose of Lexapro so it is good that you stepped in and caught the problem. The point is you should not have had to and many people would trustingly accept anything they are told. On my soapbox everyone needs an advocate these days.
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I so agree, Veronica. When I asked the DON and Director of the facility if the psych service checked on patients in the late sfternoon/evening to follow-up on adjustments, there was thundering silence at the other end of the phone line.

I said, folks, that is Geriatrics 101, right? I'm not even in that field, and I know that.

Cold comfort to be right.
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The NH industry is very difficult to navigate - your mom is private pay and has her children watching out for her

The poor folks on Medicaid without loved ones involved in their care
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Communication is identified as the single most important issue in big public reviews of service quality, ooo, I would say once every three to five years? And there's always a big hoo-ha about it, and everybody rushes round talking about multi-displinary teams and interagency co-operation, and Grand Plans are implemented, and this usually filters down to something as exciting and innovative as someone saying "I know! Each service user should have a journal, and everyone enters information in it ad hoc or daily, whichever is the more frequently occurring."

[thinks: no sh1t Sherlock]

So they do that, and it becomes one of the criteria on the service quality inspection list, and each service user is dutifully supplied with a journal. Which you initial on each visit, and which otherwise gathers dust and tumbleweeds.

And if, every so often, you get a little bit excited about it and jump up and down with steam coming out of your ears and demand to know why this isn't being *done*, the reaction you get from the front line staff tends to be best described as - well it's not even dumb insolence. It's just dumb. As in "uh?"

It makes you want to shake them. And I will put money on it, Barb, that the person who told you that your mother had been seen by the dentist, at the time of his or her speaking, was failing to distinguish between a dentist and a dental hygienist. Hey! - it was someone who looked in her mouth, yeah? Not deceitful, certainly not abashed or covering up, just unbelievably, breathtakingly *thick*.

You sometimes think that they must have an entire training module devoted to "Disengaging The Brain (Your Own)."
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FOX News has nothing to do with it. Perhaps political commentary (or snipes) are better left on other message boards? Just say'in.
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So to continue the saga (no replies necessary; this is for my own benefit)....

Social Worker called last week to apologize for the lack of communication. I wasn't having it. I told her that we just KEEP having this same conversation over and over. I want something to change.

Talked to the Ombudsman over the weekend. Yes, we have the right to be informed about med changes. This cut back on Lexapro is apparently about the increasing incidence of Serotonin Syndrome in the elderly who are often (and my mother is) on more than one antidepressant. The thing is, my mom is on palliative care. I would rather she not be agitated, even if the meds are going to put her at risk. REALLY; my brothers and I all agree about this.

I went to see mom yesterday; she's fine. When I went to fill her water pitcher, an OT appeared and was asking mom questions about her hand strength. I asked pleasantly what this was all about. The young woman said that nursing had asked for mom to be screened for OT. I asked why that was; she said she didn't know. Mom was a bit agitated about being asked questions (as she can't answer, being aphasic and all).

I emailed the powers that be last night and got a call from the head of rehab today.

My mother has stopped her "ambulation protocol". (They've been walking her up and down the hallways with a walker and gait belt since she stopped being able to walk, more than a year ago). When did mom stop walking? Rehab didn't know. She was evaluated for PT last week, and approved; nursing wanted her OT skills checked out as well.

As you can see, they are taking excellent care of my mom. My brothers and I just don't know anything about it.
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Mnnfhfnnmm.

No replies possible. Not with teeth this tightly clenched. Oh Barb, are they trying to drum up business and have her entire family admitted with apoplexy?
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CM, you made me laugh, which is a very good thing.

I'm trying to navigate my way into a "let go, let God" state of mind. Which I could probably do, left to my own devices. However....

My sister in law, who is our eyes and ears, as she visits mom several times a week, in the evening, notices the little things. Then I call up the facility, find out what is going on and what I find out is that, while they are taking good care of mom, they are not telling us about stuff.

sigh.......
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Again, just an update as to my mom's condition.

Went to visit today; she was still in bed at 1.30PM, very sleepy, eating in slow motion. Drank the latte I brought her and ate most of the chocolate muffin. Her vitals have been checked and they are fine. Sent an email to the DON to ask for a UTI check and to let them know that we are concerned.
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Ah Barb
Bless you for bringing her a latte - do you suspect they let her sleep through breakfast and lunch ?
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Can it be, that people sleep in on Sundays, and elderly in NH carry on this tradition unwittingly? (Staff's choice?).
It seems so good that she ate and drank what you brought her. Keep watching out Barb. Tonight I started reading what you wrote 3 years ago, not knowing it was not today.
And I felt so bad about your Mom's troubles. But it was not the end 3 years ago. I encourage your journal here, keep it up!
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Send; she is always up and dressed when I visit on weekends; talked to my SIL and she's been abed several times this week. Mom was never an early to rise type, so the facility respects the fact that she likes to sleep late and stay up late. But that usually means they get her dressed around 10 AM.

Somethings up; I sent an email to the RN director on the unit and the SW; she was apparently weepy earlier in the week as well. There is something that troubles her, we don't know what it is. If she can get a few words out, she'll say to us "you know, you KNOW what it is!" Once, when I told her that I truly did NOT she said "don't put me through this!" She sometimes thinks she has MRSA or leprosy and wont' let us bring the great grandbabies to see her.

Ms. Madge, they hand fed her breakfast. She had eaten a good deal of her lunch when I got there, but in slo-mo. Very strange.
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Have they checked her for UTI or pneumonia or lymph node infection? When my mother was in the NH I noticed she was not aware when she had an infection or that something hurt. Dementia seemed to protect her from discomfort and ease her passage. It took them a few days to realize she had pneumonia because she had no symptoms and she would fall asleep a lot, which they attributed to her age rather than illness.
Mom was a very bad eater for 20 years but toward the end she stopped eating entirely.  It sounds like your mother still has an appetite which maybe is a good sign she is not giving up.
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Have they checked her for UTI or pneumonia or lymph node infection? When my mother was in the NH I noticed she was not aware when she had an infection or that something hurt. Dementia seemed to protect her from discomfort and ease her passage. It took them a few days to realize she had pneumonia because she had no symptoms.
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barb - it is a change, which is concerning. My mother with vascular dementia went from using a walker to being bedridden and sleeping half the day in a couple of months. It was due to the dementia, They get her up and dressed in the mornings and she sits in a wheel chair and nods off in front of a tv. She sleeps in bed in the afternoons. Mother still has a appetite and her vitals are good. She can feed herself pureed food, but if anyone offers to feed her she is happy to be fed. Mother can still articulate her concerns which is a blessing. Hope you find out what is going on. ((((((hugs)))))
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Sorry to hear about these changes, BB. It must be a bit like that feeling of a turn in the weather, and you're not sure if it's going to settle back down or blow up a storm. Hope there is either an explanation or even better a return to normal.
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Thanks to you all. The facility has , at least in the past, picked up Infections before we'd seen any signs at all.

Mom does seem to decline in the summer. I'm not sure if it's the heat ( she's in an air conditioned environment, but allergens, etc) or what, but there always seems to be a decline at this time of year. They are going to review her meds, monitor i/O and have the aprn check her again tomorrow. They say they are seeing significant cognitive decline.

This is so NOT what my mom wanted.
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No, it isn't.

She's not really self-aware now, BB, it won't horrify her as the thought of it would have done years ago. Doesn't make it any less awful for you though. Hugs x
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Huh! That's a very comforting thought, CM, which actually makes me feel SO much better. I appreciate it!
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So, a couple of developments. Had a chat with the nurse manager on Mom's unit after we sent an email, alerting her to changes we were seeing in mom's behavior (staying in bed, eating V E R Y slowly). The conversation started out somewhat contentiously (I can't be held responsible if your mom doesn't tell us that she's in pain!).

I explained that we all are trying to be team players here and are trying to provide useful information to the facility to further mom's care. NOT trying to play a game of "gotcha".

I got a very thougthful email from her yesterday; they've been keeping track of mom's input/output and are finding that she should be drinking more; and that when she stays in bed, she hardly drinks anything. She asked if I thought this was a true decline or simply infection/dehydration.

I gave her a brief hx: graduated summa cum laude from college at 82, suddenly at 88 presenting with terrible anxiety which led us to cognitive testing, which revealed a stroke and dx of Mild Cog Decline BEFORE her "big" stroke in 2013. She seemed grateful for the background and I also pointed out that these declines (which always herald "the new normal" always seem to occur at this time of year, when the weather turns warm. Allergy related? Dehydration?

No clue. Just feeling happy that I was able to give someone information who appeared to be listening.

Head of rehab emailed today; they evaluated mom for self feeding today and will be applying to Medicare for some sessions to improve mom's utensil use.

Good news all around.
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Seems like "nurses" would want to know all their patients "backgrounds" they are taking care of. I don't get it. My moms AL had her med chart sheet dosages wrong at doc visit yesterday. 10 phone calls later by me and it's still not figured out. Hard enough watching parents decline slowly in front of our eyes let alone making sure they're getting what they need at NH or AL and demanding it after being "nice" about it after 100xs. The communication is rediculous where my mom is
Thinking of you BB
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I posted the other day in the "whine" thread that mom fell and broke her wrist. (These things ALWAYS happen in August, it's uncanny!)

Went up to see her yesterday. Naturally, this was the two days that I'd arranged to have a rare overnight with my 5 yo grandson, but I took him with me and We stopped in twice.

Mom was out both times. Doesn't look like she's in pain.

Talked to NH doc today who confirmed that we don't need to do followup with an ortho (the ER said to my brother " of course you'll followup with an orthopedist". Yeah, right.

Doctor is concerned because she is getting congested from being in bed so PT will attempt to get her up today.

Doctor (NH director, who is lovely) emphasized that the aim is comfort.

Thanks for listening. Dating this 8/2017
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Just got off the phone with POA brother and SIL who is mom's most frequent visitor. 

SIL upset at mom's facial bruising, discharge from two black eyes. Wants an xray of mom's face. Said mom does seem to want to talk or think.

(INSERT SILENT SCREAM HERE).

Okay, so if we do an xray of her face and there is a broken bone, are we going to rush her into surgery? (no).

Why should mom talk or think? She's got Vascular dementia and aphasia. She's not in pain.

Why do I keep having thus conversation?
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Barb,
I was following this thread when you were Babalou but lost track of this thread. I had no idea your journey is so challenging and ongoing. I found it after you mentioned it on the Whine Thread.

I just don't know what to say...

I hope you and your Mom find peace soon.

Those words just don't seem to cover it.  I just don't what else to say.
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Thank you Lizzie. Just got off phone with brother, we are on same page.

Hey, I'm not a hands on caregiver. My mom is getting decent care in a NH. She's docile and only occasionally agitated. She saw her third greatgrandbaby for the first time on Monday!

She's 94 and has had a good and long life. I don't want to subject her to any more poking and twisting than we have to.
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You don't have to be a hands on caregiver to experience extreme levels of stress and frustration.

Being the troubleshooter with the NH is enough to send one screaming into the night!

Take care of yourself.
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Talked to mom's nurse today. She ate breakfast, but is refusing to get out of bed. Talked to brother and sil tonight; mom apparently didn't eat lunch or dinner and choked when taking a sip of water. Coughed up a lot of mucus. They will start her on nebulizer treatments tonight.
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