Time sensitive: Mom is in a delirium but is refusing treatment

Jackie_K

Hello community - my mom is experiencing a delirium of some sort right now but is refusing to get treated. She's been sick recently and her regular doctor has said she should go to the ER, but mom is refusing. I tried to take her myself yesterday but she almost jumped out of the car while it was moving, so we didn't make it there.

Some context:

• Mom is newly diagnosed (within the last few weeks)
• She lives alone currently - we are working on getting her in home care or into a residential facility, but it's not set yet
• We are also working on getting durable power of attorney - met with a great elder care attorney a few weeks ago, and they are drawing up the paperwork, but it's not in place yet
• She is not driving currently and does not have access to a car, thankfully
• She has had mood swings but always seems to return to her "rational" mind within the same day, and has up until now really only been exhibiting early stage signs of the disease
• Over the last week, things have been steadily escalating - she's imagining things (ie that we're listening in on her calls, etc.) and over the last 2 days she has been calling repeatedly (20-30 times over the course of a few hours), including at all hours of the night, to either yell at me and my siblings, or leave voicemails to accuse (mostly me) of things that just don't make any sense

I called the Alzheimer's Association earlier today and they suggested we that she has an underlying illness that is causing this delirium, and to go in a pair to try to get her to the ER again today. My brother and I did this and it was, as you can imagine, an ugly scene. She barricaded the doors with chairs, was screaming and throwing things. We called the paramedics - but they would not take her because my mom refused to be treated (we explained that she has dementia and was experiencing a delirium, but since she was able to tell them what year it was, they said she was of "sound mind" and couldn't be forced.)

She is clearly sick right now - there was vomit in her garbage cans that I cleaned up while I was there, and yesterday she was sick as well when I was there. Of course, she is insisting she is fine and that we are awful children, etc.

We called her brother over to try to help, but she would not listen to any of us. After 8+ hours there, and enduring a lot of verbal abuse, we all left.

We are all at a loss for what to do right now. This delirium will not end until she gets treated, but we can't get her in for treatment. Have others encountered this? What is the right course of action here? Do we need to get a guardianship or something like that in place? Or are our hands truly tied here?

thanks in advance for any help here...

M1

Keep calling the paramedics. At some point she will become too weak to refuse.im so sorry. Cathe attorney in the morning and ask for emergency help too.

Emily 123

Hi--Wondering if you were able to get her help? I see you posted at 0200.

This really bothered me, so I sent your question to one of my co-workers, who used to be a paramedic.

She notes that because of the pre-exisitng dementia overlaid with delerium:

''... If they feel she is a danger to herself (not allowing treatment and the aggression she’s exhibiting), they can request law enforcement get an ECO (emergency custody order) to force her to the ED for exam and treatment. This is in VA, I don’t know the processes in other states.''

https://law.lis.virginia.gov/vacode/title37.2/chapter8/section37.2-808/

Another thought...You could do worse than calling the local ER, describing the delirium, vomit, etc and asking for advice. Sometimes they can unstick the wheels.

And I would ask to talk to the director of your local EMS and describe your concerns about your mother's assessment for her altered mental status/possible sepsis.

jfkoc

Please call her PCP. Relat all and ask how to best test for a UTI test (with culture). Left untreated a UTI can be very serious.

Jackie_K

Thanks so much everyone.

I did just talk to her doctor (I have been in contact with her several times over the past week, she is the one who has been telling us to go to the ER). Because we don't have POA yet, we can't override my mom's decision in this case, I guess. It's completely maddening.

They suggested we call the police and request a welfare check and see if that will work. We are going to try that shortly.

@Emily 123 thank you for that advice - the paramedics response yesterday really bothered me. She was clearly in an agitated state - we had to climb over chairs and a vacuum cleaner to get to her, her pupils were dilated, she was shouting and screaming, she threw her bottle of meds on the floor. She was able to tell them her name and what year it is though so apparently that counts as being "sound of mind?" It doesn't add up to me - I'm going to ask see if the police will be more thorough (checking her meds as she clearly hasn't been taking them, they can probably check her garbage and see all the vomit, etc.) and I'm going to see if there is another legal angle here too (I am in IL).

The paramedics were there for maybe 7 or 8 minutes, tops. I told them she had dementia and their response was, "we aren't in the business of kidnapping people, ma'am." I was beyond angry. Sometimes it feels like the system set up to NOT help us.

I will keep you posted. thank you! This has been a really difficult few days...

Jackie_K

Ugh... so unfortunately the police will not help. They will not even do a wellness check. I don't know what to do... this is so maddening.

Emily 123

Oh no. I’m so sorry. It will matter that they understand that this isn’t her normal dementia. That this is delirium on top of dementia and your concerned is that she lacks capacity and she will self- harm. A key phrase would be ‘Altered mental status’

I was looking at the Illinois legal aid site. It looks like you might need a lawyer to get her emergently admitted. Have you discussed with them? They could point you to someone if they don’t have any answers. Or like M1 said, at some point if she continues she will reach a point where they can take her in.

But yeah, EMS could be a little more understanding.

Here’s some links I found:

https://www.namichicago.org/involuntary-treatment

https://www.ilga.gov/legislation/ilcs/documents/040500050K1-119.htm

https://www.dhs.state.il.us/onenetlibrary/12/documents/Forms/IL462-2006.pdf

much of what’s online is related to mental health, and might need her doctor to sign off.

M1

Jackie did you call the attorney? It might help.....

Jackie_K

Hi everyone, a quick update. Mom made it to the ER! She was just admitted.

We tried social services and a crisis hotline after the police wouldn’t help, and while they were way more helpful than that police or paramedics in that they were at least trying to find a solution, they ultimately couldn’t help because my mom refused treatment.

What ultimately worked was not answering her calls for several hours. It was a risky move but I think it forced her to come down from whatever heightened state of agitation she was experiencing. I did text her to let her know I would answer her calls if she went to the ER. She finally agreed to go about an hour ago and she seems calmer.

So very grateful for everyone’s advice and support! Thank you!

Emily 123

Strong work, Jackie! Let us know how it goes. I hope they can figure out the underlying issue and that she can get back to her baseline, & that you get some sleep!

Anonymousjpl123

@Jackie_K I am just seeing this but here to say you did an amazing job of getting through this. I hope you can breathe a little and know you’re not alone. A trip to the ER was what finally helped my mom get the right level of care. Take care of yourself and hopefully you can get some good resources now.

forbarbara

Experiences like yours are unimaginable - until they happen. You’ve done an amazing job under nearly impossible circumstances. Please take time to recognize how well you did and how strong you are. But also recognize the trauma you’ve been through and the toll it can take on you. I hope this wonderful online community will bring you some comfort and support.

M1

Must be a relief Jackie. This is perhaps your opportunity to get her into residential care. Let the hospital social workers help you regarding power of attorney and placement. And as I said last night, let your attorney know what's going on and see if he has suggestions for expediting things. Keep us posted---

MN Chickadee

What a wild ride you have been on. You must be reeling. Please take care and let us know how things progress.

jfkoc

UTI test results?

Is she admitted?If so we can share a lot of info onnext steps.

Jgirl57

Great job Jackie k! What an emotional roller coaster for you and your mom.

Jackie_K

Hi everyone - THANK YOU so much for all of your kind comments! I am just now logging in to the forum after a very long day, and reading all these supportive messages is making me cry! Thank you for sharing all of your advice and wisdom. It truly has been an emotional roller coaster for us, and we really are learning as we go here. Knowing that others have been through the same types of ups and downs makes me feel so much less alone in this...

My siblings and I are at home with mom now and she is back to her normal self again. She got agitated a few times while waiting at the ER overnight, but ultimately came down from whatever it was she was experiencing these last few scary days. She has almost no memory of anything that happened. We didn't share all the details with her as we didn't want to stress her out more, but she could sense something happened and felt very confused. This disease is truly wild.

The ER did identify a heart condition that needs to be treated immediately, so I am grateful that we continued to push to get her there as it could be fatal.

Definitely going to contact our elder care attorney next to expedite that POA! Also hoping this will help expedite getting her into a residential facility, or in home care set up.

Have a great rest of the week everyone!

Emily 123

Just food for thought Jackie...do you think maybe she mixed up her meds?

My mom seemed ok other than a little forgetful of conversations, but had started thinking her AM vitamin was her thyroid medication, and so wasn't actually taking her prescription.

forbarbara

Along the same lines as Emily123 — she could have been unintentionally overdosing. My PWD was taking her morning pills several times each day. At that point her daily pill sorter box became useless and I took over her medication management. It solved the immediate problem and then we were able to identify her underlying (and undiagnosed) dementia.

You are on a rollercoaster for sure. Buckle up and enjoy the good times, and learn to blame the disease - not yourself - for the bad ones. Here’s to many good days.

harshedbuzz

@Jackie_K

I am so happy you were able to get your mom to the ER.

What is the nature of her heart issue? When an individual develops dementia, that should be factored in when making decisions about medical procedures. Keeping in mind that Alzheimer's and Vascular dementia are both terminal illnesses and that medical interventions that require hospitalizations and anesthesia that accelerate the disease progression, balancing risks, consequences and benefits is very tricky.

Specific to heart procedures, you'll want to be mindful of the consequences of things like pacemakers and internal automatic defibrillators which can rob her of the potential to pass gently in her sleep unless deactivated which is a difficult choice for a family member to make.

HB