Dementia and the ER... This is a rant

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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.

29 Comments

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?
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!
Jeannegibbs- patients with dementia and individuals with autism.
And you know what? Good practices for dealing with persons with dementia or autism would probably be good for everyone else, too.
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.
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..
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.
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 !!
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.
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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