On Saturday I will again be presenting my class on Geriatrics to a group of paramedics and emergency room nurses. The topic of gerontology is not taught in emergency medicine so the material is all relatively new to them.
I have been teaching the topic for years and since my wife’s diagnosis I have greatly expanded the AD portion of the presentation and tell the AD tale from a personal perspective. (Which is a shock because commonly a few people in the audience knew my wife when she was still working as an ER nurse)
Presenting this material puts me in a position to perhaps be able to make changes in emergency medicine relative to Alzheimer’s. With the graying of America I know that statistically AD people are going to be more common in the future. It stands to reason that more AD people are also going to come into contact with the emergency care system.
However I am not sure how best to prepare emergency practioners (EMT, Paramedic and Nurse) for dealing with AD. I pride myself on teaching material that is relevant and practical and so I am asking for your help. I want to weave real world events into the class.
Have you had contact with the emergency care system (ambulance, fire department, paramedics, emergency room, etc.) since AD came into your life? What were your experiences? Good or bad.
Have you had to call the paramedics on your spouse? Did the paramedics & ambulance responders understand the AD situation?
What about yourself? The 2010 Alzheimer’s report (released yesterday) quotes a study that 24% of caregivers had an ED visit or hospitalization in the previous 6 months. When you needed emergency care; who took care of your spouse? Did the paramedics or hospital staff understand that they needed watching and care also? Did they suggest getting somebody to watch them because you could not or did you have to tell the paramedics that you could not leave for the hospital until somebody could come and watch your spouse?
Is there anything else that you can tell me that you would like emergency medical personnel to know about AD? We all know what a pain AD is in the chronic sense, I want to teach practical, appropriate emergency care concepts.
If you don’t want to post, you can send me an e-mail using my profile. Thanks, Jim
Jim, my husband had to visit the emergency room a few times during our long ordeal. The one thing that always annoyed me the most was the fact that after they tried to talk to my husband and I would explain to them that he had AD and couldn't cooperate in answering questions they would look at me and say they understood. Well, then they would ask him the same questions, only they would scream at him like he was deaf. I used to shout right back at them that he wasn't hard of hearing....he had AD. God, that drove me nuts.
Whenever he was hospitalized I stayed with him. I knew that they were not equipped nor educated enough to deal with someone in such a demented state. The nurses were always very grateful for my help....and I think I helped to make them understand that this type of patient is atypical and needs special attention.
Some of my most enjoyable moments would be when a doctor or a nurse would tell me that they knew all about dealing with someone in my husband's condition. I just loved when they would put their hands on him or try to examine him. The sound of the doctor hitting the wall and then having him or her open the door and ask for my help was music to my ears.
Can you tell I did not enjoy these experiences....? LOL...
The paramedics and EMT personnel were always the kindest and most understanding......I always wondered if it was due to the fact that they were all young and not jaded and burnt out yet.
Good for you in educating the people who need to know.......
When my wife was in the ER recently, the PA examining her gave me a list of possible diagnoses. Then asked for each one whether or not I would want it treated. If my decision was not to treat, he did not test for that diagnosis. He fully realized that AD is a terminal disease and not all problems seen in the ER should be treated with more than comfort measures. This action on his part saved the medical industry a lot of money and my wife a lot of aggravation.
Since DH came home from the hospitalization that gave us his Dx, we've used Emergency services 4 times (between late 2006- and late Spring 2009). The EMT's have always handled his care well--getting him up, onto the gurney, and loaded Very mannerly, and while they talk to him and ask him questions, they ask me(on the side) for the real scoop. I sent with them a current list of his meds. Sometimes the med list was passed on to the Emergency Room staff, sometimes it may not have been. I always bring a spare. On 3 of these trips, I went by other transport to the hospital, arriving to be delayed at the counter in joining him. He would be on the gurney in a curtained room--alone. Very shortly he'd be trying to climb off for one reason or another. I would spend a lot of time distracting and diverting. TELL THE EMTsTO MAKE IT CLEAR TO THE EMERGENCY ROOM PERSONS--THE PATIENT CANNOT BE LEFT ALONE! Dealing with the Emergency Room Staff is something else. They talk to him; ask him questions, tell him instructions he does not get. TELL ME; TALK TO ME. On the one trip I made in the Ambulance with him (it was after 1 a.m.) I told them when I called that I also am disabled but had to go with him because of his dementia and they'd have to help me get aboard too. There was no problem. I was there with him the whole time, keeping him on the gurney and keeping track of him when he did use the restroom. For fairly long stretches (every time) we'd be in the room alone. If he'd been there alone they'd have lost him for sure. The word must be passed.
Jim, You have my gratitude for educating the people who handle our loved ones during a crisis. My experience (and it's been considerable) is the EMT's, firemen, and ED staff have been excellent and responsive to my husbands special needs. Caregivers need to clearly and immediatley explain their lo has alz or dementia then step back and let the emergency personnel do their job. I stayed close but didn't hover and we were always treated with respect. The only suggestion I have is to stress to your people how important it is to pass on the alz info to the next person who will be caring for the patient. Precious time was lost because well-meaning but uninformed people pushed me out the door. Again, thank you for what you do. cs
Just about a year ago my wife fell on the front walk of our house and cut her chin badly enough to require a few stitches to close it back up. It was a Saturday and my only reasonable option was our local E room. The staff there could tell in a moment that she was not capable of dealing with them on her own and they deferred to me. They were patient and gentle. I think the situation will vary depending upon the stage that your loved one is in. If he/she is in a relatively early stage where short term memory loss and a bit of cognitive struggle are the main issues they may not realize that there is anything wrong beyond an understandable level of anxiety. For those caregivers in that situation it is YOUR responsibility to tell the ER staff what the deal is. As far as what to teach emergency staff... tell them to ask if they get the feeling that something is not right.
for the last month hospice for DH has been bringing EMT/paramedic trainees along with the RNnurse visits. they are trying to educate them as well here in tx i guess. they take BP, and listen attentively to changes and different ways to intereact with AD patients. i think its an excellent idea. i've had many visits to ER during our journey. very important is to not leave an AD patient alone =they will pull out iv's or caths and get up and trip and worse get out the doors unnoticed- another thing is ER drs should know that a calming agent like ativan is very good in case of aggitation or anixiety- especially if they have to do ivs or blood draws or catheter the patient. its overwhelming to them and a small dose of ativan is very useful. i was totally wiped out each time without it as i had to keep DH on the bed and from pulling on tubes. also i found it impossible to go to the bathroom or a vending machine the whole 6-8hrs there as you cant leave them alone and nobody to stay while the caregiver gets a break for a minute. let them know that AD doesnt like to remove clothing alot of times. if they can put a hospital gown over the upper part and leave the pants so be it. upsetting them to get them undressed seemed a waste of time and energy. and they should have Depends in the ER incase they are needed. luckily i had a large bag i knew to carry after the first awful visit. water, snacks, extra depends, wipes, - they had nothing in the ER. and it would be of great help to put an arm band or color band with dementia on it for ALL to see. hope this helps. divvi
Oh, also. When Caregiver says or has on med list something NOT to give. Believe it. For my DH, when anxious and agitated---Haldol DOES NOT help. It makes it worse. Been there done that.
I guess commuinication is key. As important or more so even than some of routine handling.
This is not in regard to my DH in this case, it is in relation to dealing with my mom when she had this disease. One thing that would incite this normally compliant person to get hostile would be too many hands at once trying to help.. In this instance, she needed her depends changed and she was not wanting to do that. But the caregiver got her in the bathroom and with the help of another caregiver, tried to change her clothes..I saw what my mom did which was to start to bat at the other ladies to get away. It was too much commotion around her not to mention she felt closed in like a trapped animal. Along those lines, when wanting to see inside the mouth to say ahhh I think how one approaches the patient has to be of concern. To come on them straight onward while they are confined to a chair or bed might make them want to push back as also in the cornered animal scene.
Another thing that began to really bug her, and this took time to figure out, was the color yellow..I don't know what it was about that color but it would get her all spun up. So colors might something that can cause anxiety somehow.
A third thing she would do that would confuse people is choke on food she chip monked. She did not swallow her food for some reason, just sort of packed it in her mouth. Twice she was taken to hospital for choking incidents only to find out it was her problem with swallowing.
In the later stages she would think the blue veins on her hands and arms were blue worms and she would pick at herself to get them off. We finally had to put little gloves on her hands to keep her from damaging herself.
And I think the last noteworthy incident with my mom happened when she forgot how to walk..which was over night..she was standing when she went to bed then the next morning she didn't know what to do with her legs..so out came the wheelchair. She would get terribly frightened if we were to try to push her forward in the wheelchair. We could never quite figure that out so we had to walk backward with her in the chair to get her to the car or kitchen or wherever we needed her to be. Even using her teddy bear baby didn't always work though it normally did help..getting her to believe the baby needed her and would not quiet down for anyone else.
I so agree with the colored arm band. I always tell them that he is a "fall-risk" and they band him with a red band. That at least ensures that he has the rails up and that they leave the doors open to try to prevent him for getting up by himself.(sometimes I have to go into the restroom) perhaps a purple arm band?? also I agree that the depends and wipes should be avail in the er area. It is embarrassing for the nurse/aide etc. to sign and groan about having to "order" from the supply area.
I would just echo the other statements about not leaving them alone. Even if the patient appears rational, talks completely fine and seems perfectly ok to stay by him/herself. I like the idea of a wristband that would alert the ER staff about this. My DH looks and behaves in such a way that no one would understand that he can't or wouldn't be able to call for a nurse or pull the emergency cord in a bathroom or that he wouldn't STAY where he was expected to STAY.. He'd certainly pull out every tube or take off any irritating device.. and look perfectly healthy and lucid while doing it.. WAITING in any place ALONE is an invitation for trouble.
The above suggestions are great. Our experience is that when they have admitted him to the ER, they talk to him like he understands and try to take a complete history which he cannot give them. Even when I am there they insit on talking to him. He is left alone for long periods of time (no one checks in) and he becomes restless and wants to leave. I would recommend that if possible the ER staff should prioritize treatment/exam for the AD/dementia patient so they can get in/out without the very long delays which leads to restlessness and wanting to leave the hospital before the exams are finalized. one trip was 6 hours (2:00 am) before he was discharged and during that time he did not receive any of his meds.
Fortunately, I have never had to call 911 for DH. I did have to take him to the emergency room while we were 500 miles from home - found out his appendix had burst. They were very good with him when I explained he had just been DX'd about a year before. I stayed with him the entire time until they had to send him by ambulance to a larger hospital for the operation. And they were all wonderful at that hospital also.
But all of the above comments show me what to look out for, how to be prepared or try to be prepared. Thank you all for your experienced voices.
Before I went to nursing school I worked a year in a convalescent hospital as a nurse’s aide just to “see if I could take it” before I wasted my time in nursing school. After graduation I then worked in a big urban trauma center for about 5 years and have now been teaching emergency and pre-hospital care for the past 15 or so years.
The time I spent working in long term care (which wasn’t all that much) is world’s more time than any other folks in emergency care. In all my years of emergency care I have never met another nurse who had ever worked even one day in long term care. (ERs are staffed with lots of ex-ICU nurses, a couple of old-OB nurses, some nurses from pediatrics, but NEVER LTC) From your postings I can see that that is a big part of the problem.
Some themes I have noticed and can become a part of my teaching :-) Emergency folks dont understand LTC patients - need for adult diapers etc. Emergency folks dont understand dementia patients - they have to be watched, they dont give accurate info, etc. Emergency folks dont understand the relationship between dementia patient and caregiver - Who do you get reliable information from?
Wow, divvi the story about how a hospice organization takes EMT students on rounds is fantastic!!! It is very difficult to get emergency people to spend ANY time in a long term care clinic type of situation. A very common complaint is that emergency folks (EMTs or nurses) all HATE convolescent & LTC patients. They all certainly need to learn and understand what happens in LTC, but I don’t know anybody who is teaching it to them. That is great that somebody is.
One thing briefly touched on here is this: A lot of us here - though we haven't discussed it much lately - are determined NOT to resuscitate our loved ones if they have a stroke or whatever. We certainly intend not to prolong their agony when they are in late stage or even near late stage AZ. Yet EMTs are mostly REQUIRED to attempt resuscitation - why else would we call them. So we resolve NOT to call them in if that's the patient's condition. And years ago we had our l.o.s sign the POA for health care, and living wills. But if we leave a caretaker in charge, they most likely WOULD call 911 and the process would spiral out of our control.
My husband has had "absence seizures" for years - not often, but the first time it happened when my daughter was caring for him alone and the neighbor who came over said they should call 911, which they did, but it was pretty disastrous for him. Took weeks to recover (at home) back to the state he'd been before.
You know, I think something the AZ Association could do that would be easy, cheap.. MAKE and distribute purple armbands with AZ name on them to put on if someone's getting hustled into an ambulance, and develop a one-page card to go along with it on which the caregivers could mark pertinent info.
Above all, EMTs - especially when picking up someone from their own home - should LISTEN TO THE CAREGIVER!!!
briegull, I loudly echo your last statement that the EMTs listen to the family. Not having to do with Alz this time, the story is important in it's lesson. My fil was in last stages of his particular illness. His doctor had made his house call and sent word to the hospital to which he was to be admitted that he was coming to meet his patient. We were told to call for the ambulance..Well they came alright! Seems they take patients only to a certain hospital which was not the one we were to go to. They got really ugly with us,told us to get out of the way they had charge of the patient and were taking over. They yelled and darn near got physical. All this in front of my mil who has multi infarct dementia but was able to absorb what was going on none the less. This crew took my fil and off they went..got to this hospital, by now fil was filled with fear and begged to go home...could not take him. Second crew showed up, demanded payment before hand and then took fil to his hospital...fil law died shortly thereafter. The leader of the first crew came to me and told me to tell mil how sorry he was for this upset. I told him in no uncertain terms that was his duty as he let the whole thing get out of control,,there was no understanding on that first crew's part though we said we would take fil to hospital on our own..no dice..bad experience and I have little trust in this sort of care now. Was not much better in TX when dealing with my own dad. So glad someone is taking the lead to educate these crews who are so important to emergency situations. They need to learn to listen.
I agree with all the above and would like to add a few little things.
An AD patient gets more confused when taken out of their enviroment, so keeping the area as calm and quiet as possible is to their advantage. Speak calmly and quietly to them when possible. They respond slower to questions than an average person...so give them time to process the information before they can respond.
Speak in short simple sentences. They lose the first of the sentence before they get to the end if it is to long. Break each question down to bare essentials.
They may appear to be normal mature people...but depending on the stage they are in, they may be children...respond accordingly. They cannot operate as adults.
Perhaps I can give everyone here a little infomation about ambulance transport. There are basicly two types.
First is the (very) private ambulance that you called (generally using a 7 digit number) or was refered to you by your health plan. This ambulance should operate similar to a taxi, taking you where ever you want to go. If the ambulance is contracted to your health plan they will most likely take the patient to the health plan's hospital. (ex. Kaiser insurance) The exception is if the ambulane crew 'believes' that the patient is 'critical' or needs immediate care. If this is the case then policies would direct them to transport to the nearest hospital.
The other type of ambulance comes when you dial 911. The ambulance is commonly a 'government' unit (ex. Fire Department) althrough contracts with private providers to respond to the 911 calls are not unusual. This ambulance is guided by strict policies and regulations set down by whoever regulates emergency care. (health department?) These responders MUST follow strict guidelines related to who they call, the treatments they give and the destinations they go to. Commonly their destination is the "nearest" hospital (specifc to the patient's problem - pediatric, OB, trauma , etc.) so they may by-pass one hospital to get to a more 'appropriate' one. 'Patient request' is generally not in the policies.
A well designed system SHOULD allow latitude to take you to YOUR destination, but a 911 ambulance is under pressure to 'get back into service' so even if they are ALLOWED to go farther, they might say that they cant. (and yes even in the EMS world there are some bad apples)
As for following advanced directives that would direct NOT treating a paticular symptom? In Los Angeles our system DOES have policies that allow paperwork (advanced directives, POAs, POLST, etc.) to determine what treatments and interventions are not performed. ALL EMS systems SHOULD have procedures that allow for not giving an intervention or treatment, but sadly not all systems do. There do exist some systems where the ambulance crew MUST give full treatment even to a hospice patient(!) Yes, this is completely senseless!!
I guess the lesson (suggestion?) is that unless you can learn the policies that exist in your 911 system, dont call the 911 number unless you want the ambulance crew to to everything possible to try to bring life back to your loved one.
If you are in a hospice situation and for lack of a better reason your plan is to use 911 to make a body removal, the suggestion is to wait for a long time before you call (rigor mortis) because ambulances are never suppose to transport dead bodies and all EMS systems would recognize rigor as dead.
In cases of expected deaths it is always legal to either call the coroner directly (in LA they commonly get calls directly from families) or a (pre-arranged?) mortuary. One of the professional duties of a funeral director is to clear up the necessary paperwork (police, coroner, death certificates) after making a body removal so you do not need to worry about that.
Just knowing who to call to get what you want can always make things easier and in our AD world we need to be as easy as posible.
Just noticed this thread--hope I'm not too late for the training. Please educate them about EOAD. My husband looks normal, is 65, and some might not believe me if I told them he has AD. When he was in the early stage and I tried to give one a dermatologist some information he wanted, he said to me "Your husband can speak, can't he?" In other words, why was I answering? And this doctor was aware of his diagnosis!
marilyninMD, Do I echo your post above.Just the other day we were at 2 doctors for routine followup appts. Same thing..DH looks ok! speaks clearly and used correct words. Says he feels great...but when I bring up a concern and DH dismisses it..doc believes him. So frustrating.
m-mman, thanks so much for your explanation of the emergency services. One THINKS one is going to be competent and in control, but quite likely that won't be the case. Thanks for being honest and explicit.