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 Unhappy clarity about ER visits 
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Unhappy clarity about ER visits
Yesterday I was with my friend Jane in the ER because her husband, with end stage Parkinsons and LBD, had fainted in the neurologist's office and was very slow to revive. The neurologist ordered a full spectrum of tests to see what had caused this to happen to Harry. Harry is 14 yrs older than Jane and in his 80s. He is uncomfortable and miserable all the time now, a sweet man, but very demanding of Jane, who is totally exhausted and brain-fried from 10+ years of caregiving.
The nurse was rattling off all the tests that had been ordered for Harry. Jane had earlier told me that she did not want him to be put through a lot because his last hospital session had put him at a new and lower baseline and made him more miserable.
When the nurse spoke I could tell that Jane was not processing the info, so I piped up and said, "Are you aware that he has also been diagnosed with LBD? Are you aware that some meds or agressive testing procedures can do irreparable harm or cause irreversible damage to patients with Lewy Body Disease? My husband has LBD and that is how I know about it. Extra care needs to be taken with LBD patients in ERs so they do not drop to a lower baseline."
You could have heard a pin drop in that room for a few seconds.
Then the nurse explained that ERs were designed for dealing with the concern that the patient presented upon arrival and that was the focus of what they did. She said that he may be admitted later and that the next day a hospitalist would do a full history upstairs after the patient was admitted. Since Harry had fainted, that was what they would be dealing with.
I responded that in the case of LBD, that part of the patient's history needed to be taken into account in the ER so that no permanent harm would be done inadvertently.
She repeated the ER mission of focus on finding out why Harry fainted and dealing with that. The message was "ERs do this; hospitals do that."
I thought to myself, "So that is the protocol and they are required to follow that." It felt like my words were trying to turn a freight train moving down the track---it was not going to budge.
However, when the tests were done---and this time Harry seemed to handle them better---and the hospitalist came to the ER and sat down to talk to Jane and Harry, I could tell that my words did have some impact.
The hospitalist said that he usually did not need to take much time to determine what was going on, but that this time he had made a point to get the history, notes from the neurologist, meds list, had read every word and studied the test results. He then gave his conclusions.
But I knew he was covering a base( I managed a law office in my other life) and making sure we in that room knew that he had broadened his focus and was including more history than usual in his analysis.
I let him know how much we appreciated his efforts and his time (Jane was still a basket case) and he seemed to soften and relax himself at that point and went out of his way to help Jane and Harry. When I mentioned that hospice care had been discussed several times, he looked like that registered with him. I later heard him tell the nurse to have the hospice doctor come in and evaluate Harry.
Today Harry qualified for hospice care.
Two lessons learned for me today.
1. Try to have someone with you and your loved one in the ER . It needs to be a person who will speak up and alert staff to the danger associated with LBD and ER protocols.
2. If you can possibly avoid it, stay out of the ER if LBD is an issue.

Oh, and I later heard that one of the nurses said that I had talked about "Lowy Body Disease". :lol: That made me laugh, then it scared me.

I am still feeling scared from this experience. It rattled me.

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sat Oct 08, 2011 9:42 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Unhappy clarity about ER visits
Yep. Stay out of the ER.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sat Oct 08, 2011 11:43 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Unhappy clarity about ER visits
Stay out of ERs. If you HAVE to use one, bring LBDA literature with you. It is great if you can bring an advocate with him, but I'm afraid many of us would find that difficult or impossible.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Oct 09, 2011 1:23 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Unhappy clarity about ER visits
I'm so glad that you were there to help your friend, Pat. She's very fortunate to have you as her friend.
One of the things I've done is made several copies of the one page "Lewy Body Dementia is" fact sheet and put them in a laminated sleeve that I then carry in bag that I take to all of my mom's appointments and outings ( it's sort of like carrying a diaper bag... I have an extra Depend and some wet wipes in a baggy, some hard candies, and usually a bottle of water and the latest book that I'm reading). Any time I have to explain LBD to a new provider I'm able to give them a fact sheet which is really helpful, and they are always pleasant and seem grateful to receive it. I ask them to put a copy in her medical chart.
Ellen

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sun Oct 09, 2011 1:35 am
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
Post Re: Unhappy clarity about ER visits
I found this story more frustrating in terms of what it says about the wife and the neurologist, not about the ER.

Did the neurologist suggest going to the ER? (Was the fainting due to OH?) Did the family discuss hospice with the neurologist?


Sun Oct 09, 2011 11:47 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Unhappy clarity about ER visits
Yes and no, Robin. Yes, the ER was doing its job as they are trained to do--treating the issue at hand but, no, the neurologist was very unlikely to have been available for input when the patient was taken to the ER. It was, after all, an emergency. Ever try to get hold of your specialist in an emergency?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Oct 09, 2011 11:54 am
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: Unhappy clarity about ER visits
Ellen, thank you for your kind words. Your idea about the handout on LBD is brilliant. Can you tell the rest of us exactly where to go to be able to print that sheet called "LBD is..."?
I have a sheet on the list of medicines to avoid with LBD, but your sheet sounds ideal to include with it.

Robin, I totally get what you are saying and agree, which is why I was there all day with Jane. First, what is OH? I am not a nurse and do not know all the shortcut names for things.
Let me answer your very appropriate concerns as best I can.
The neurologist is the one who called the ambulance to take Harry to ER when she had trouble reviving him in her office. She sent instructions for the full spectrum of tests to be done. We also found out that she had put Harry on one of the meds on the list of LBD "no-nos", and Jane revealed for the first time that this was the 3rd med she had prescribed for Harry that Jane saw on my list. Jane became furious when she put that together while sitting in the ER. The neurologist had discussed with Jane that Harry was likely ready for hospice care, but it is unclear whether that evaluation was ordered along with her other instructions to the ER or whether the hospitalist ordered it. I heard the hospitalist tell the nurse that hospice eval was going to be done, but another nurse later told Harry's son that she knew nothing about that. (?????) (Maybe she is the one who talked about "Lowy Body Disease", too) :shock:
I would get another neurologist more familiar with LBD, but I am not Jane.

Now about Jane. She is a modern day Job. My dear friend has more right to be brain fried and spirit broken than any person I know. Harry is her second husband of over 20 yrs. Since marrying him, she has lost both her daughters in traffic accidents 10 yrs apart, been caregiver to her parents who had Alzheimers before they died, had her only 5 yr old grandson snatched from her arms at the hospital just after learning of her second daughter's death and taken away by one mean former son-in-law, who has a criminal record and kept the child to get the Social Security check.(He had nothing to do with him before Vicki's death.) The now-15 yr old grandson lives with Jane and Harry in the middle of all this Parkinsons/LBD drama that has been ongoing for the past 10 yrs. They pay for everything for him.
Obviously, this is a much longer story than can be told here, but Jane does not always think clearly in the moment because she has been completely overwhelmed by what has happened to her in the past 10 yrs.

Do I believe that both the neurologist and Jane should have handled this situation differently? You bet I do!

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Oct 09, 2011 4:53 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Unhappy clarity about ER visits
Sorry I forgot it was the neuro who sent her to the ER. I'll wipe the egg off my face, now. :oops:

Here is the pdf file I hand out to caregivers and medical professionals. http://www337.pair.com/lbda2007/sites/d ... webLGL.pdf This document is OK to copy.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Oct 09, 2011 6:08 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 191
Location: Portland, Or
Post Re: Unhappy clarity about ER visits
Pat- to get the fact sheet... go to the LBDA home page and under "Quick Links" select "LBDA Publications" then select "One Page Fact Sheet about Lewy Body Dementia" and the fact sheet pops up. I made about 20 copies the first time I found it to give to all of my family members, etc. , then made another 10 copies that I carry in my bag to all of Mom's appointments, and as I said before, people really appreciate it because ( as we all know so well!!) most people have never heard of it.
For people who don't have printers, you can order copies on line.
Ellen
oops, I guess this is easier, here's the link..http://www.lbda.org/sites/default/files ... eet-EC.pdf

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Ellen 59, caregiver for mom Marion 82, dx LBD Feb 2011


Sun Oct 09, 2011 6:17 pm
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Joined: Sun Jun 24, 2007 5:35 pm
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Post Re: Unhappy clarity about ER visits
Ellen, I took your directions and printed out a page printed on one side with "What is LBD?" and the backside with the list of medicines to avoid that are listed in my upcoming book (compiled from lbda.org and John's neurologist).
Now I feel like I have what I need to cover both important bases with medical people who need the info quickly.
Thanks!

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Sun Oct 09, 2011 9:56 pm
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Joined: Fri Dec 31, 2010 3:07 pm
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Location: Minnesota
Post Re: Unhappy clarity about ER visits
ANother good one is Emergency Room treatment of Psychosis

http://lbda.org/go/ER

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Sun Oct 09, 2011 10:32 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Unhappy clarity about ER visits
Pat wrote:
my upcoming book (compiled from lbda.org and John's neurologist).


Certainly not using any posts from the Forum, I hope! I would object to having candid discussions here referred to in a published work.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Oct 10, 2011 12:56 pm
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Joined: Sat Jun 11, 2011 2:35 pm
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Post Re: Unhappy clarity about ER visits
Thanks for the literature suggestions. I keep a bag packed with medicine routines, spare clothes, insurance info, alergies and medical history, etc. ready to be grabbed on the way out to the ER. I will add copies of the pages that you suggested. So far, I have always been able to stay with my mom when she is in the ER or the hospital. Even so, the hustle and bustle there is usually difficult for her. One other thing that I might add to the unhappy ER, and there's probably nothing they can do about it, but my mom is very sensitive to even minor dehydration and before they will let her have fluids, they have to wait for test results which do not always come back very quickly, compounding the problem.


Mon Oct 10, 2011 1:42 pm
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Joined: Sat Jan 03, 2009 2:59 pm
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Post Re: Unhappy clarity about ER visits
Pat,
How sad for your friend, I am wondering who told them to go to the ER, if it in fact was the Neurolgist I would think he would be the person in charge of what would happen once they arrived at the ER, I have heard this before where many things happen in the ER and it is because they deal only with the issue at hand.

Kate. There should be nothing printed from the forum messages as we all know this is a private forum and I don't want anyone to feel they don't have their privacy and I am sure Pat is well aware of this!

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Irene Selak


Mon Oct 10, 2011 2:01 pm
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Location: Minnesota
Post Re: Unhappy clarity about ER visits
That's my hope, Irene. I've just learned over the years that sometimes people forget these things in the enthusiasm they feel for their project.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Mon Oct 10, 2011 2:12 pm
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