hospital/emergency department visits and sundowners (patient assault)

@trishcnwma Oh, oh how difficult your ER visits were! I would have 2 suggestions, the first, her sundowning behavior. Have you had a good, productive meeting with her doctor? They need to know about this behavior and can probably do something about it. The doctor might prescribe sedatives for afternoon or at least afternoons when you suspect that an ER visit is coming up. Not a heavy drug, just a ‘light’ sedative. Try it out once or twice before the next ER visit.
Maybe you could ask for a meeting with the ER director or manager. They have probably already heard about the ‘incident.’ Tell them about the visit without accusing anyone of elder abuse. It could be a good opportunity to share solutions.
Another avenue to try is speaking with the Patient Advocate. They can listen to the whole ‘incident’ from your point of view, and then talk with staff for their point of view and then, meet with all of you together (or not). The role of a Patient Advocate is to advocate for the patient and find solutions that will benefit all. You want a win-win end. I hope one of these suggestions will help!

Good morning…I too, had a similar experience with a ED visit. My husband who has moderate to severe Alzheimer’s dementia was experiencing extreme sundowning, starting about 3p going through early am. We could not control his aggression. My son and I took him to our ED the next morning, after several incidents, The staff was less than compassionate, borderline rude, reminding me that the ED does not treat dementia sundowning. Testing was done to preclude UTI, and other possible causes..all were negative. Followed with our PCP who stated he was experiencing dementia-related psychosis and started him on a mild sedative which has treated the outbursts, however, his anger continues which is controllable. The sedative has made him less responsive and more sedate, thus he is more comfortable. A trade-off. It is appalling to me the insensitivity experience at the ED…this is a cruel, devastating disease for both the patient and care partner and surely should be recognized in every medical facility. Mayo Clinic is absolutely the best. Good luck with your LO. I hope you reach a comfort level with a low dose sedative..it truly helped my husband. God bless you and your family.

@dlssell I'm sorry you had such an awful experience in the ED, and glad you followed up with his primary provider. I do hope you reported the incident to the Patient Advocate. If it ever happens again, please do so, then the staff can get the proper education.
Since you waited until morning to bring your husband in, I will say we had better luck in an Urgent Care Clinic rather than a crazy, loud ED when my Mom was not feeling well. Is that an option where you live?

I am so sorry that you had a such a difficult experience in the ER with your loved one's sundowning. It is terribly frustrating for all that are trying to do what is necessary to make the patient feel better including you and your other sister. And no picnic for the patient either. In my experience there is absolutely no way to convince the person with the sundowning that what they are experiencing is not real to them. They know when they feel pain (passing kidney stones is often compared to the pain of childbirth) and when a situation makes them fearful, anxious and even terrified, the natural response for any of us is to flee the situation.
I agree with the previous post about going to an urgent care clinic if at all possible. They are more likely to be less chaotic and possibly have shorter wait times because they don't have to deal with serious trauma, heart attacks and other life threatening problems. Taking her in the morning might allow you to avoid the hours where sundowning could be a problem. Having a mild sedative at home that you could give with her other morning pills before the visit would probably help some. Also, as you have been doing when checking in, forewarning the staff of her dementia, the need for a quiet atmosphere, minimal contact with staff (strangers who touch her) and her low tolerance for waiting. I agree that speaking with the hospital's Patient Care Advocate is a good idea. I personally would not wait for a second incident. This is the person who can investigate what happened from both sides. It will bring this problem and the staff's response to light. If it were me, I would take pictures of the bruises you feel are from that encounter so you can show the Patient Care Advocate as well as any notes from the results of the x-ray that you said you would be getting from the urgent care clinic. The Advocate, with your input and that of the ER staff, may make changes in or create a new policy for dealing with patients who present with sundowning or psychosis ( break from reality) which happens even without sundowning in older patients who are abruptly take out of their familiar environment or have had anesthesia and wake up surrounded by strangers in a strange place. My husband, before he was diagnosed with dementia had a psychotic episode after each of the two times he had back surgery. He thought he was in our house. I could not convince him that he was in the hospital. He wanted to and succeeded in pulling out his IV and taking off his monitors. The way we managed this was to have either my daughter or myself with my husband 24/7. That way he could at least see familiar faces. I would also insist that you be permitted to have more than one person with your LO to help when she is taken in the back to a room. Also, whenever I have to take him to a doctor's appointment, imaging center, emergency room, chemo appointment, I take my "go bag". This is a backpack that is filled with tissues (for his constant runny nose) his diabetic supplies, snacks for both of us, water, a book for me to read, a change of clothes and disposable underpants( he is incontinent) and anything else that I think would be helpful to either of us. For your sister it may be a small favorite object or some photos of loved ones that you may be able to distract her with while waiting. However, if I was passing a kidney stone there is nothing that would distract me from the pain short of dose of morphine or fentanyl.
I also carry in my purse copies of a form that has all the information the doctor, nurses, admitting clerk would need to know. This saves lots of time when they are trying to get a history of the patient, your sister's would state that she has a history of kidney stones and of course her dementia. This can speed things up considerably and explain the severity of her pain. Also current medications, previous significant surgeries/procedures. One ER physician that saw my late father said " this form just saved me a good 20 minutes" If you are interested I can email you a copy of this form. I hope that all the suggestions made by everyone on this thread are helpful. This is really a tough thing to deal with. You are in my prayers.

@ocdogmom Love your idea of the “go bag” and it’s contents!

Thank you. It has really served us well. It gives me some peace of mind knowing that I have everything we might need away from home. I started using one when we had to spend all day at the Cancer Center for his chemotherapy infusions. Thank God he is now in remission.

@sueinmn
Good morning, yes, urgent care is possible but a disappointed experience so I shy away…thank you for your suggestion…

@trishcnwma
What great ideas from everyone. The only thing I can add is to review the ER notes from your sister's recent ER visits. If you think they are accurate, tell them when checking in or see the triage nurse. Let them know about previous problems and ask them to review notes from xx/xx/xxxx visit. Or have a printed copy with you. Another alternative is a letter from her PCP that provides information on how she should be treated, appropriate medications, suggestions for multiple people to be with her to control her, etc...

There's no guarantee it will help or speed up the visit, but it might. Also, if you do not think the visit notes are accurate, every hospital has a policy for correcting medical records.

@becsbuddy Thank you for your suggestions.

My sister and I have the same PCP and she is awful - literally does nothing to coordinate care. It's all been on me. We use her as little as possible and only for necessary scripts. I've been trying to find a new PCP for well over a year and it is near impossible. People in MA post about this endlessly. I will follow up and see if the PCP can recommend something light that will calm her during ED visits.

I met the Patient Advocate during a prior ED visit. She did not seem helpful but I will be calling her, likely today. I've been trying to meet with someone at our local COA (Council on Aging) to discuss this first and that outreach person has limited hours. I also still have to calm down before calling.

While I was briefly away from my sister's ED room, hospital staff changed her out of the johnny and into her nighty. I can only imagine that was done to prevent me from seeing the bruises from staff. We got home around 1-2AM and didn't see them until the next day. I also saw a medication vial on the monitor shelf where they log in medication. There's no medication listed for the visit but she was exceedingly subdued when I returned, so I'm convinced they gave her something and did not disclose it.

@dlssell I'm so sorry for your experience! UTIs are terrible My sister seems to get one about every 6-12 months, and now kidney stones. I hope you spoke with a Patient Advocate and am glad your husband is calmer...I do understand the struggle to choose calm while also striving to keep them alert and involved in life. God bless you and your family also. It's a roller coaster that I hope we caregivers all survive.