View unanswered posts | View active topics It is currently Sun Dec 21, 2014 12:09 am



Reply to topic  [ 16 posts ]  Go to page 1, 2  Next
 When is a trip to the emergency room warranted? 
Author Message

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post When is a trip to the emergency room warranted?
Dad called me tonight and was very upset about Mom. It was hard to even understand what he was saying because he was crying throughout the call. Yesterday she fell 3 times (not unusual). The third time was in the shower when he turned his back momentarily to get a towel for her. She has a shower seat but apparently, she stood up. She hit her head on the shower wall but seemed o.k. During the night last night, she got up "at least a dozen times." Several times it was to use the toilet, but she also got up for weird "Lewy" reasons that she can't communicate very well (she needed to inspect the floor and the refrigerator, for example, but Dad couldn't figure out why).

This morning she would only eat one bite of her breakfast and went back to bed. At lunch she only ate a few small bites and went back to bed. She usually has a very good appetite. She slept longer than usual this afternoon. Dad woke her up at 7:00 or so, and she was fairly nonresponsive and very lethargic. Her speech was very weak. He called me in a panic. I got there about 10 minutes later, and found them in the bathroom. He was helping her wash her hands after she'd used the toilet. Then we took her to the couch where she hungrily devoured a bowl of popcorn and talked a little bit when I asked her questions. Her voice was normal. Dad sent me home saying she seemed better.

Some brief background is that on Tuesday her doctor discovered she had a UTI, and she began antibiotics that evening. Her last dose was this morning. I took her temperature tonight, and it was 99.1. Her blood pressure was normal and her pulse was just a little fast, according to my dad (he checked before I got there). Her caregiver comes in the morning, so I told Dad to talk with her about it and if Mom still has a fever, even if it's low, to call her doctor.

So...my question: If my mom had not improved by the time I got there and was still lethargic, not eating, and not responding to questions, should we have taken her to the emergency room? In time, I know those things will just be due to the progression of Lewy. What can the emergency room do about it? On the other hand, my dad is just beside himself whenever she seems to take a sharp decline, and I feel like I need to take Mom just to give him peace of mind.


Mon Aug 08, 2011 12:37 am
Profile

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: When is a trip to the emergency room warranted?
Well, I have a strong feeling that ERs are not suitable places for dementia patients. Yes, sometimes it is necessary. In the situation you describe, I would be inclined to call Coy's clinic, describe the situation to the answering service (assuming it is after hours) and wait for a call back from the doctor on call, who at least has access to Coy's medical history. I would ask what I should watch for, what would constitute a need for immediate ER care and whether bringing him in to see his regular doctor when the clinic opened would be sufficient/needed.

I've got to say, I HATE making these kinds of decisions. :(

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


Mon Aug 08, 2011 12:45 am
Profile

Joined: Sun Oct 21, 2007 4:18 pm
Posts: 835
Location: Acton, MA
Post Re: When is a trip to the emergency room warranted?
The ER is the very last place I want to take Frank. If I were really concerned, I'd call his PCP, he doesn't think the ER is a good decision either, so I'd go along with whatever he recommended. It is difficult, especially when you're concered about your dad as well as your mom.
Take Care,
Gerry

_________________
Gerry 67, cared for Frank 71, married 49 yrs; dx 2004, passed away October 26, 2011.


Mon Aug 08, 2011 5:32 am
Profile

Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: When is a trip to the emergency room warranted?
Our ER experiences have been horrible. Avoid them when you can. I would be concerned that your mother's UTI might not be responding to the antibiotic used. Do you know if they ran a culture and sensitivity test? Check her urine if you can and see if it's cloudy or strong-smelling and let her doctor know she's still running a slight fever and describe her behavior. Hope it works out OK. Sounds like a very frightening and frustrating situation.

_________________
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.


Mon Aug 08, 2011 10:01 am
Profile

Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: When is a trip to the emergency room warranted?
There was an extensive discussion about this within the last year, I think. Do a search on Emergency Room and see what you find.

This is one of the hardest decisions you will have to make - right up there with the nursing home decision. Though I knew my mother's wishes (I asked her what she wanted me to do if I couldn't wake her up) I still took her to the emergency room or called paramedics. It actually took a hospital visit to get her to the nursing home where we engaged a palliative care doctor who could help us through this.

The first thing to know about ERs is that, regardless of what a medical directive might say, their first priority is to save the patient's physical life. The medical directive is legally ignored in the ER. So, before you take your Mom to the ER, be sure whether it is a situation in which you want more than to just keep her comfortable. If it isn't a life threatening situation, of course you want injuries or illnesses dealt with. Definitely call your doctor first.

There is a lot of documentation you need to file in order to protect any wish your mom might have regarding ER decisions. In the case of 911 calls, paramedics assume you want life sustained since you called for their help. A verbal discussion is not enough to stop them. Neither is the presentation of a medical directive. You must file paperwork with the county so that the paramedics know what is desired before they get there. There is Do Not Resussitate, Do Not Hospitalize, Do Not Intubate, and the list goes on. If you don't have a palliative care doctor working with you, get one. They have a whole team to help you with all of this.

The ER/911 jungle will bewilder the uninitiated. It bewilders the initiated. You need someone to guide you who goes through this professionally and repeatedly. I strongly recommend a palliative care specialist. They will know what to do in these circumstances. This will probably help your dad, too, as he navigates through this.

Good luck.

Kate

_________________
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 Aug 08, 2011 1:31 pm
Profile

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: When is a trip to the emergency room warranted?
An emphatic second to Kate's advice, on both the ER and paramedics. Have all your paperwork, be prepared, and be very sure what you and your family want. Even if it is at home!

I was with my grandmother's 101-year-old cousin for her last week. She had pneumonia and was dying and was completely lucid and wanted no more care, just to die at home, as she was physically frail and tired. FL required that paramedics come in event of a home death, I guess to verify that the person was really gone and there was no obvious foul play. So they showed up about 20 min later, no big rush. I showed them her DNR, etc, which was posted on the wall right over her bed, to make sure no one overlooked it. They did their little checks and discovered a "very regular heartbeat". They then started setting up to revive her. I was having a fit, pointing out that she had a pacemaker, and they were picking up that signal, as she was very obviously stone dead. And she was 101 and it was an anticipated death. They said hey, no pacemaker documentation, we have to resuscitate. I finally dug out the bracelet - we had taken it off because it was chafing her wrist - and they finally decided that yes, she really was dead, and it was copacetic, and pronounced her, and let me send for the undertaker.

Also second the advice to call the doctor or the on-call people if it's not an obvious emergency like broken bones or something you know you would want to treat. So far every time I have done this, their advice has been spot-on, with both parents. A second benefit is that it is very reassuring to my parents - they don't argue about going to ER if the doctor says it is necessary, and they quit fretting if the doctor says it can wait.


Laurel

_________________
Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Mon Aug 08, 2011 7:53 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: When is a trip to the emergency room warranted?
I worry that you alone won't be able to convince your dad to do whatever you decide is the best course of action. Can you get any other wise counsel to assist you and your father in making the best decision? Can you speak on the phone with your mother's neurologist?


Mon Aug 08, 2011 11:13 pm
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: When is a trip to the emergency room warranted?
I agree that the ER is the last place to be and I do agree that speaking with her Doctor as to how to handle these events in the future may help with the decisions

_________________
Irene Selak


Tue Aug 09, 2011 7:16 pm
Profile WWW

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: When is a trip to the emergency room warranted?
Yes, it seems like some advice from the doctor is in order. Given the frequency of her falls, it seems likely that this decision will come up again.

Julianne


Wed Aug 10, 2011 8:24 am
Profile

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: When is a trip to the emergency room warranted?
Thank you for all your help. I'm going to talk with Dad about all of this so that we know what to do next time. I think calling the doctor on call is great advice. I don't know why I didn't think of it. I've done that when my children were sick, and it was very reassuring. We do have DNR paperwork, advanced directives, etc., but I didn't know we needed to file it with the county. Dad was told to put the bright pink DNR form on the refrigerator for paramedics to see if they ever come, but he doesn't want Mom to have to see it every day. Instead, he's putting it on top of the fridge and plans to just show it to them if necessary. Now it sounds like that might not be enough to have that piece of paper. We see her neurologist at OHSU tomorrow. This may be her last visit with him. We have to drive an hour or more each way, and it doesn't seem like we need a neurologist just to manage meds. Her local primary physician is very good and a lot easier to get an appointment with. The neurologist is booked six months ahead.


Wed Aug 10, 2011 6:08 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: When is a trip to the emergency room warranted?
You might also consider discussing with the primary care physician (since you seem to receive good service from him) whether your mother might be a candidate for hospice, especially if you don't plan further ER trips or hospital stays. Your mother might qualify if she's losing weight, if she's been hospitalized previously for UTIs, or if she's clearly declining (physically).


Wed Aug 10, 2011 8:19 pm
Profile

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: When is a trip to the emergency room warranted?
She hasn't lost weight and hasn't been hospitalized for over a year. Her neurologist told me today that she is likely to die within a year, definitely within two years. He said she's declining rapidly. In May 2010 she was at a 28 on the brief memory test. Today she was at 14. He said the average Alzheimers patient would be at about 26 after the same amount of time, so that's how much more quickly she's declining. Today we got brain donation paperwork. Since she's a patient at OHSU, they will accept her brain for research and do an autopsy for us for free. That was a relief to hear. We really wanted to not only donate her brain so that we feel like maybe some good could come from it, but also we want some concrete answers. We were afraid we'd have to pay for it.


Thu Aug 11, 2011 8:10 pm
Profile

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: When is a trip to the emergency room warranted?
So glad to hear that brain donation is of interest to you both.

I don't think OHSU has published any research on Dementia with Lewy Bodies or Parkinson's Disease Dementia utilizing brain tissue but their neuropathologist is an up and coming guy so maybe such papers will get published down the road.


Fri Aug 12, 2011 12:26 am
Profile

Joined: Fri May 28, 2010 4:46 pm
Posts: 119
Location: Salem, Oregon
Post Re: When is a trip to the emergency room warranted?
He said he had colleagues who were studying it, so maybe!


Fri Aug 12, 2011 2:40 pm
Profile

Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: When is a trip to the emergency room warranted?
Thanks for reporting the neurologist's comments regarding your mother's prognosis. That's an interesting comparison by the neurologist between AD and LBD as far as the rate of change in a MMSE (or similar exam). My mother's score also dropped by about half within a similar time frame. Her neurologist made no comments about what it meant, particularly in relation to her overall decline or prognosis, though she is declining fairly rapidly.

Julianne


Fri Aug 12, 2011 2:46 pm
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 16 posts ]  Go to page 1, 2  Next

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr