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Warning.. this is a rant as I am fearing another ER visit coming up with my Dad who now has a respiratory infection at the memory care. As their caregiver.. ER visits are one of the worst aspects and the most dreaded. (especially now in flu season) Since my parents moved closer to me (4 years ago), I have had numerous horrific, exhausting ER experiences. My dad has been in the ER at an average of 2 times a year in the last 3 years.. all for unrelated issues... for breaking his knee cap, for a kidney infection, for pneumonia , for broken ribs, for an infected gall bladder ... My mom has been in the ER twice since they moved 4 years ago. Once for a TIA and once for a broken wrist. That's at least 8 ER visits with them. The ones with my mom I had to bring my Dad along as I didn't have caregivers at the time. The ones with my dad... I had to bring my mom. They both require 24/7 care while in the ER or hospital. Each visit I get numerous questions from them (over and over and over), long wait which usually end in them admitting them. With my dad.. he will not use the urinal they provide.. so each visit ultimately ends with him having some kind of bathroom accident. I usually see things that no daughter should see. Each visit I get texts from relatives...who want to care from afar... all with concerns for the parent (never me) ... all who want to be "kept informed" ... which means they want to know medical details about my dad. Sometimes I include non medical details like when he pulls out his IV or when he has accidents in the ER... when no one is around (except me)... just for their enjoyment. My parents have each recovered from each ER visit... but each time it takes something out of me... it puts me in such high stress and really highlights what it is like to be alone with someone with dementia. Ok rant over. I pray things turn around this time ...at least he has a D.r at the memory care who has already prescribed antibiotics... but he did have pneumonia just last year.. Every time I hear of any kind of illness with them I start getting high anxiety of my most feared dementia experience.

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katiekay- I completely get it. If there is a hell im sure it is exactly like a hospital ER.

Especially for me, it’s the waiting. It’s as if time passes in dog years - every one minute feels like 60.

Then add in the claustrophobia. You get put - after endless hours - into a tiny curtained cubicle where you spend more endless waiting. 

And while I have to reasonably believe it’s not the case - but it seems that every time you peek out your curtain - just to reassure yourself they haven’t forgot about you - all the doctors and nurses are standing around in that center island shooting the breeze.

I actually believe that they go out of their way to make it as miserable as possible to discourage people from making frivolous visits.

I use to say I’d have to be dying to ever again - after many, many visits with both parents and Rainman - go to the ER.

A week before Christmas I got very ill. Hubby wanted to call an ambulance- I refused saying there was no way I was going to the ER! After about 18 hours of being really ill, I finally agreed to let hubby take me in. Guess what? They told me I would have died if I had waited a few more hours - and they scolded me.

I mean, what’s wrong with this picture? I gotta believe there are better ways to run an ER. But what do I know?
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Hospitals in general just DO NOT GET IT about patients with dementia. ERs are a top contender for Worst Place in a Hospital.

I have two friends who are ER nurses. I know how hard they work and that it is a stressful job. I am not criticizing all ER workers. And they do amazing life-saving work.

But I certainly think our care for persons with dementia and the elderly in general could use a systematic overhaul!
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Jeannegibbs- patients with dementia and individuals with autism.
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And you know what? Good practices for dealing with persons with dementia or autism would probably be good for everyone else, too.
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Preaching to the choir with me. ER's are an experience for anyone, really, but, seniors, dementia patients......omg. And the germs you can pick up and get sicker than when you arrived.

That's why I wanted to avoid any further ER visits for my LO who is late stage dementia. After discussion with doctor, apparently, the only way is Hospice. But, he doesn't think she's there yet. She had downward turn, then seemed better. Last visit they couldn't get a vein, many sticks, then catheter to get urine sample, she's scared, in pain, crying......this just isn't right to me. Anyway, she recovered, but, it could happen again. I wish there were options.
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My moms last ER visit was a nightmare like the others. Seeing doctors, lab work, CATscan, trying to do pelvic ultra sound. Saw GYN at 6:00PM. Got diagnosis... around 5:00 her switch from being nice to paranoid-mean turn on. She didn’t get transported back to SNF until 11:00PM So I told SNF no more trips to the ER unless it’s a broken bone,something they can’t treat, and they agree. It’s ridiculous, ER don’t know how to handle people with Dementia..
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LisaNJ, is your mom on Hospice? I got the impression that they had to transport the resident from MC, if sick, change in mental status, etc. Do I have that option to say no transport, unless injury? Hmm.....I'll have to check it out further.
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What I had learned with my two elderly parents [who were in their 90's] were to either call 911 thus if a parent goes by ambulance they automatically get into the ER medical section so much quicker then sitting out in the waiting room waiting their turn in triage.....

Or depending on the ailment, to drive the parent to the neighborhood Urgent Care. The wait in the waiting room has less commotion, and a more cozy feel. Urgent Care will take care of everything even broken bones, UTI's, pneumonia, etc.

Oh, yes, every time one parent had to go to Urgent Care, I had to bundle up the other one to go, too. And that in itself can be exhausting getting both ready. Looking for misplaced canes, eye glasses, Dad looking for his wallet, then someone needs to use the bathroom, then Dad trying to decide which baseball cap to wear, then Mom saying "are you wearing THAT one?". And making sure whomever is the "patient" that they have their Medicare card, their secondary card, plus old driver's license for photo ID.

I do remember one ER visit where Dad had a fall, and later into the exam the nurse was wondering if Dad had a head injury. The reason for that was my Dad said that we [he and I] have a long drive home as we live in Iowa.... ah, we live in Virginia just 15 minutes from the hospital. I didn't correct Dad. The nurse looked at me, I looked at my watch and said, "well it is 4pm, Dad thinks he lives in Iowa"... it took her a few seconds then she understood.

I really believe that more medical staff need to understand the inner workings of dementia and alzheimer's. But i did quickly learn as my Dad was being checked in to mention that Dad had sundowners. And for my Mom, that she could no longer hear everything or see everything, so she would come across as appearing to have memory issues [which she didn't at that time]. Imagine if they both went in on their own !!
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It would be nice if staff were more trained to manage dementia patients but from my experience with medical support staff this won’t happen.
My mom was hard of hearing and had a mastectomy on the right side- labs were not to be drawn on the right side & I requested a piece of paper to note both above her head of bed. I came in early one morning to see the phlebotomist drawing labs from her right arm. I hit the roof. I don’t think the girl read the sign nor understood why labs were not to drawn on the right side.
This was years ago this I don’t know if this no lab policy persists.
How sad is it that a patient/parent must have an advocate these days. An advocate that is present most of the time just to watch over them.
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It would be nice if staff were more trained to manage dementia patients but from my experience with medical support staff this won’t happen.
My mom was hard of hearing and had a mastectomy on the right side- labs were not to be drawn on the right side & I requested a piece of paper to note both above her head of bed. I came in early one morning to see the phlebotomist drawing labs from her right arm. I hit the roof. I don’t think the girl read the sign nor understood why labs were not to drawn on the right side.
This was years ago this I don’t know if this no lab policy persists.
How sad is it that a patient/parent must have an advocate these days. An advocate that is present most of the time just to watch over them.
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Shane, sometimes notes can be misinterpreted. The phlebotomist might have thought reading the "right side" not to mean the patient's right side, but the phlebotomist's right side since that is how she/he is looking at the patient. I have seen nurses write in black marker right on the arm if it cannot be used for blood test.
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Sunnygirl1, No my mom isn’t on hospice. She’s been to the ER twice for UTI and the third time for vaginal bleeding. She was diagnosed then with Uterine Cancer. Nurse Practitioner at SNF wanted to know if the bleeding was vaginal or rectal..
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OMG Lisa. Heckuva nurse practitioner. I’d love to say “unbelievable!” Unfortunately, it’s quite believable. Hang in there.
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My mother doesn't have dementia, but I have some experience just bringing the elderly to the ER. (My mother does have holes in her reasoning, but her hearing problems and slow processing speed plus her unsteady walking are the bigger issues with her.)

I have just about decided that I'm not accompanying her into the ER anymore for one of her "dizzy spells." She told me she's not going to the ER anymore, so we'll see if she sticks to that. The last ER visit was Memorial Day weekend. At that time, she refused to allow an MRI, so they couldn't really tell anything (and this time it was more serious; she had blurry vision and the room kept "tilting" so I really did wonder if it was some kind of stroke).

I don't want to sit with her for hours, taking her on multiple bathroom visits that take forever and having to get a urine sample. Remember, she told me she didn't want me back in the examining room at doctor visits anymore, because they talk to me and not her. And all the while, asking multiple questions and making comments, and me having to repeat my responses or answers to questions multiple times.

And then there's the flu epidemic. I don't want to sit in an ER for hours with all the sick people. I don't want to get the flu. (And if she gets the flu, I'm not taking care of her.)

So I'm pondering if she thinks she needs an ER visit, that I'll say to call the ambulance (we have a free volunteer rescue squad here) to take her to the ER, and then have the ER call me when she's ready to be picked up.

I know I seem callous, but it's so hard to be chirpy during these marathon ER visits, often coming home after midnight, because she always has the emergency after even the Urgent Cares have closed. I resent having to do this.
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CTTN55, regarding your Mom's blurry vision and the room tilting, have your Mom see an eye doctor [ophthalmologist].... Mom maybe having an issue with double vision which can make someone feel dizzy.

I finally admitted to my own eye doctor that I was having double vision problems. Mainly in one eye that felt like it was drifting. She knew exactly what was going on. She placed the phoropter in front of my eyes and showed me a series of lens choices, of which now contained a prism. Oh my gosh, what a difference.

My lazy left eye was apparently inherited. While going through the family tree and finding photos, I saw where my Great-great-grandfather on my Dad's side had a slight lazy eye. Ah ha.
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freqflyer, since the last ER visit (end of May 2017), my mother has since seen her opthalmologist and all checked out fine. Well, I guess it did. I'm sure she doesn't hear everything the doctor said, and I'm not allowed back to the examining room with her.

(The dizziness and blurred vision disappeared.)
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I was sick last year for several months with weird stomach pains and bloating--just felt gross all the time. Finally, the pain really settled in my right side and I was like "Oh thank heavens, it's just my appendix and they'll yank that sucker out and I'll be fine". Went to the local Urgent Care and they immediately turfed me out to the ER of my choice. Since the ER knew I was "enroute" they were johnny on the spot and I got awesome treatment. I literally walked in, gave them my name and I had an IV with pain stuff going before hubby could park the car.

I did get a bunch of tests I needed anyhow, and it wasn't my appendix, but the takeaway for me was coming in through urgent care. And since UC couldn't do anything for me, they didn't charge me--that's standard.
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fast track in the ER.. chest pain. Any chest pain.. LOL And who would not have stress related chest pain after dealing with the er? They are probably going to do a test for your heart anyway.. speed things up! I had to go for vaginal bleeding once.. yep, some chest pain. Got me out of the sitting room onto a bed in a cubical mighty fast! And getting out of that germy waiting room was my goal.
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To give the nurse practitioner the benefit of the doubt, Lisa, perhaps she was verifying that you used the correct terms. I'll bet there have been more than one person who said their mother had prostate trouble.
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Oh Lordy, the ER! My narcissist mother took herself there many times. She just called a cab. As a distance caregiver, I got phone calls from them about her current symptoms. Her tests all came out as normal. I told them she was fine. One Christmas I was with her post gallbladder surgery and she appeared in my bedroom door at 6 a.m. in a long white nightie looking like a ghost. "I threw up," she said, "and I have to go to hospital." Little wonder, thought I, as she had eaten lamb chops, pate and pickles the day before, despite my objections that that was not good post gall bladder surgery fare. So, after dressing, I drove her to a downtown hospital on Christmas Day. The local rubbies had come into the ER off the street to warm up, and mother was sitting in the midst of them, bolt upright in her elegant black winter coat and red scarf, looking very aloof, but not particularly unwell. My tongue was cleaving to the roof of my mouth, as I hadn't had a coffee yet. I managed to get a dishwater type one from a machine in the area, and suggested to mother that this was not a good place for her, as she could catch germs. However, she insisted in staying another hour till finally I could call her doctor, who said, firmly, that it was not a good place for her, and that she should go home and rest.
We got home, and I thought that was the end of it until she announced that she had left one of her good black leather gloves in the ER, and I would have to go back for it. I asked if she had checked her purse and her pockets, and she declared that she had, and it wasn't there, and insisted that I would have to go back to the ER for it. I could tell from her expression that she was getting some enjoyment out of this. So I checked a coat pocket, and indeed it was there. Game over! She was disappointed that I found it.Total waste of everyone's time and energy just for her entertainment. Merry Christmas!
SMH still.
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Not a dementia story, just my personal favorite ER story.

So, DH had open heart surgery, gets aorta and aortic valve replaced. On blood thinners for life. Wears a Medic Alert bracelet.

(please note; I don't do ERs if not by ambulance; long experience has taught me that if you come in on your own steam, they disbelieve EVERYTHING you tell them your doctor just wrote down for you). We walked into the ER of a major NYC hospital with a script that said "aortic aneurysm ; please call Cardio Thoracic Surg" and the triage nurse was like "he looks fine to me and his EKG is normal".

I said some REALLY bad words that night.
Fast forward about a year....
So, DH becomes unresponsive while in the bathroom and I say to him "if you don't wake up and GET UP I'm gonna call 911". He grunts. I realize we have an ACTUAL emergency on our hands.

I call 911. We live, I kid you not, half a block from a hospital. Not a trauma center, but a hospital. The EMTs come, they extricate Mike from the "throne", put him on a gurney and they say to me, " you could walk there quicker than we can transport".

"But if we come in with you lovely gents, they will actually pay attention to him, won't they?".

So we get to the ER and they start working on him, trying to get him more responsive. The nurse is asking me rapid fire questions and I'm giving her chapter and verse, replaced aortic valve with a St. Jude, aorta replaced with a dacron one, the name of his CT surgeon blood type, etc. The nurse looks down at my out of it husband and says " "You know Mr. S, with all these problems, you REALLY should be wearing a Medic Alert bracelet".

And whatever fog Mike was in, he raised his right wrist high, for all to see his shiny stainless steel bracelet. The one that has his blood type, blood thinner and St. Jude valve number on it.

And the nurse said "oh".

So, now he has one that has a RED band.  
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Barb I love it!! My medalert bracelet is fancy, and I worry all the time that some duffus will disregard it! Maybe i NEED a red band.
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jeannegibbs, I agreed with NP to send my mom out to ER, she was passing huge clots..I had already assumed it was Uterine Cancer. ER GYN gave her medication for the bleeding.
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I also just had a recent frustrating experience in the ER with my mother who has dementia. She had fallen and broke her hip but she didn't know why she was there-she thought it was for an UTI! Each new person who came in asked her questions that she could not answer correctly/appropriately and I tried to remind them that she has dementia. Unfortunately she really was unable to accurately tell them what her pain level was. I'm sure the nurses and dr were just as frustrated! I thanked them all profusely for their patience as we tried to figure it all out.
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Used to be when you were to be admitted you quickly moved through to your room unless hospital was full - now wait is 5-12 hours even when hospital has beds. This is progress . Also I have opposite issue my mom is not usually confused so when she had lots of confusion we were upset as they just acted like it was nothing and refused to order a neuro consult - kept telling us “well she is over 80” like no big deal. This past fall they ignored our comments and didn’t check her for stroke despite us saying her face was droopy slightly and her speech different . They kept her only for weakness and we left her - still aware and able to ambulate etc- next morning my sister arrived to see her and she was completely paralyzed in left side . The staff had not even noticed nor had doc see her . And this is supposedly a stroke center !
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Hearts1960, I know exactly what you are saying. A similar thing happened to my Aunt. With her showing all of the signs the dr. said he could find nothing wrong with her. Aunts daughter argued for five hours that her face was sagging, her left arm was weak, she was having problems with her left leg. Finally after five hours he relented and did a CT. And, low and behold, there it was. A stroke. Unfortunately it was too late for TPA and she never fully recovered, to this day.
Great job doc.
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I have to sympathise a bit with the stroke specialists.

The reason they don't just give clot busters every time is that if you go gung-ho and merrily whack them in to a frail elderly patient who has just lodged a large clot in her brain and *damaged* it, you risk causing a catastrophic bleed which will be All Your Fault. It's a very fine balance they're trying to strike - if it were that simple a decision, given how cheap the drugs are, they'd give us all our own sets for use in emergency, like epi-pens.

I still wish I'd followed my first instinct and got some soluble aspirin down my mum before the ambulance arrived, though. Woulda coulda shoulda. Worse? Worse? How could it get any worse?

I love the medic alert tales. Maybe we should have MEDICALERT! tattooed on our foreheads and see if they still manage to miss them.

Barb I wish you'd flicked that triage nurse on the nose to wake her up and make her remember. My ex's blood running cold moment happened when he got a big strong policeman complaining of backache. Took the history. Did the vitals. Examined his back. NAD. Painkillers go home come back if it gets worse..? His guardian angel made him tell the nice burly policeman to roll over so he could just check his abdomen - and his hand practically bounced off it, HUGE triple A just about to say Goodnight Vienna.
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Oh my what an experience. 🙏🏻 Wishing you and your family peace and comfort.
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My husband's about to be directed aorta presented as a pain in his neck/shoulder area. Scary the things that happen.
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