Crisis management: Emergency Response Services, Emergency Rooms, Respite Care

ReallyScaredSon

The full background of our situation is in the recent thread "In crisis mode with Mom; nothing has been done; how to make the necessary happen?" (https://www.alzconnected.org/discussion.aspx?tid=2147559405&g=posts&t=2147559405).

The quick summary is this: my mom has shown worsening signs of dementia for at least five years.  It is now in crisis mode: for the last few weeks, she is having regular episodes of delusions, hallucinations, arguably bordering on psychosis.  Her PCP was only made aware of this a few days ago.  In the PCP's office, after failing her basic cognitive test, the doctor started talking about further testing when she stormed off.  In the clinic parking lot, she threatened suicide, and my dad called 911.  The ambulance took her to the ER.  The ER did a UTI test (ultimately found to be negative) and cleared her as a suicide risk.  They prescribed Seroquel and sent her home.  She took Seroquel for only three days, now refuses to take it.

My dad is the sole caretaker, as I live too far away.  They have some family near them, but none that is regularly available.  The extended family is now being called in the middle of the night when these episodes strike.

The biggest problem is that I am unable to have any regular communication with my dad.  My mom is very easily agitated now, and even the slightest hint that she has any cognitive issue will trigger an episode.  My mom is constantly "hovering" around my dad, so he cannot read or send emails or texts without her seeing.  He's afraid to leave her alone for any length of time.  We basically only talk when he's getting groceries.

Obviously he can't go on like this.  He doesn't think there is any way he can consistently and reliably get her meds.  Despite her cognitive state, she is still amazingly perceptive, making it nearly impossible to "trick" her.  He also does not think there is any chance she'll stand for regular visits from help (neither family nor paid "companions").

Everything I've read indicates that a psychiatric evaluation is needed.  It will help guide her care, and looks to be a prerequisite for many/most permanent care facilities.  But, as with meds and in-home caregivers, the chances of her submitting voluntarily to a psych eval are slim to none.  (I asked my dad about "tricking" her, e.g. say they are going grocery shopping - but he said as soon as they roll into the parking lot of the medical establishment, she'll figure out what's going on, and will trigger another episode.)

Unfortunately, I feel this will probably default to using 911 to "manage" the current crisis.  My wife and I have done some research, and it appears that we may get some help with "respite" services.  Our understanding is that this is an inpatient service, typically offered by permanent care facilities.  But it's intended to be on the order of a couple weeks, to stabilize the patient and give caregivers a break.

It looks like, given our circumstances, our only likely path to the respite care is via a call to Emergency Response Services (ERS).  It looks like ERS can help us ensure that she doesn't get "revolving door" service at the ER.  In particular, that they can help us ensure a psych eval is done (against her will if necessary).  And they can help my dad make the case to the ER that he cannot take care of her at home.  It sounds like this will force the ER to find some kind of inpatient service for her; ideally this would be of the respite type.  And if we've done the proper preparations, we can have a short list of candidate respite facilities in hand (i.e., best case is they will be expecting her).

This is more of a general question.  Does the above sound somewhat reasonable, given our circumstances?  Are there options I am overlooking?  Any other thoughts, ideas, suggestions are more than welcome.

Thank you!

terei

You are on the right track + you will find other descriptions here where when a patient becomes out of control, they are taken to an ER(by ambulance) + then on to a geriatric psych unit for evaluation + treatment(usually about 2 weeks)

Once your mother is at the ER, the family may have to insist on further referral for psychiatric placement + say she will NOT be taken back into the home because of her threats to her caregiver(husband) + behavior.

This is not meant to be used as a respite for the caregiver(though it may have that result) but to treat + manage your LO’s out of control behavior for the long term.

It may be necessary to have her placed direct from the psych unit to MC if she will not comply with meds at home.

M1

This is exactly what you should do.  If you have any choice of ER facilities near her, it will be easier if the hospital/ER she's taken to has a psych unit.

Marta

The paid respite that you reference is likely the Hospice benefit offered by most hospices. Of course, the patient needs to qualify for hospice first.

Jo C.

This is a very difficult situation and I am sorry for the stress and deep concern it is causing.  I wish I knew what city and state your mother resides in, that would give an opportunity to provide concrete information.  You are a very advocate to try and find help as best can, your parents are blessed to have such a caring son.

From what you have written, I can certainly see that your mother really does need to be seen by a dementia specialist for an in-depth assessment; however, it seems she is not going to let that happen.   One thing that would probably be of assistance would be if she was admitted for a short length of stay to a Geriatric Psych Unit; (GeroPsych).  The psychiatrist and staff would be able to assess her on a 24 hour continuum, make a determination of what type of dementia is actually present, and they can also initiate medication to assit.  They can then observe for medication effectiveness, tolerance and any possible side effects.

NOTE:  Unless your mother is dangerously acting out with suicide threats and/or taking steps to harm herself, this is not a 911 call to law enforcement.  If she is suicidal or taking steps to self harm, then that would be a 911 call. 

That being said, there are Psychiatric Evluation Teams (PETs) that in some cities/towns can go into the field when called by law enforcement when necessary to assess the patient; not all towns have this.  However, most of the PET Teams are from regular psych hospitals and you do not want that so you would want to let them know that you will want, if at all possible, to get her to a GeriPsych Unit as that level of care will be best able to manage all things dementia.

Try calling the closest GeroPsych Unit or two in a medical center near your parents.  Ask to speak to the Psychiatric Social Worker or even the Supervising RN on that Unit.  Explain the behaviors and the difficulty trying to get your mother to appropriate assistance; then ask them how they would recommend getting her to help for assessment when she refuses; also let them know she has also been threatening suicide..  Especially ask if they have or know of a team that could make a psychiatric assessment in the home.

The primary MD can indeed get the ball rolling by contacting the GeroPsych Unit and making a referral, my own mother's doctor did that.

NOTE:  Also, if for any reason she ends up in the ER again; inform the MD and nursing staff that she will NOT be able to go back home at that point due to severe behavioral issues and medication refusal as well as suicide threats - AND -  insist instead that she be transferred by ambulance to a GeroPsych Unit.  That will take a bit of time for the ER Doc to communicate with the Psych staff, but it can be done.

I speak the following from experience.  My own mother was misdiagosed with Alzhemer's Disease by her Board Certified Geriatrician.  She had over the moon behaviors; the agitation was herculean in its displays.  Awful.  Her primary care MD was at least helpful.  He contacted the psychiatric unit and spoke to the staff re admission. He told my mother that she needed a CXR - (big lie and I was grateful) - he told her she would have to go thru the ER to get the Xray. For some reason, she accepted that.

We went to the ER where she was taken in immediately as they were prepared as it was actually for a psych screening to ascertain whether or not she was able to be accepted into the unit (this is necessary and is a legal thing as it is an involuntary psych admission); she was sat on a guerney. Soon; an RN from the GeriPsych Unit came down to assess my mother. She looked like any other RN and had no name tag that stated she was from a psych unit. She was kind; asked some questions, I left the room to "use the bathroom," when she was leaving and was able to give her more information.   My mother was accepted for GeroPsych admission and was simply told she needed to be in the hospital and was wheeled to the Unit which looked like a hospital unit.  If she would have refused, she would not have been discharged as it was an "involuntary" psych admission.  She would have had no choice.

This sort of situation takes time, a bit of creativity and a lot of patience.  By the way; the worst thing one can do is even mention "dementia," or "Alzheimer's," or any thing about such a diagnosis.  To do so will cause severe upset and digging heels in even worse.  No arguing with her to try and correct her or make sense.   She will not properly process that nor believe it and again, it will increase irritation and agitation.

With my mother, it turned out she did not have Alz's; she had a behavioral variant of FrontoTemporal Dementia and that made a huge difference in the type of medication she would be best helped by.

If you need to speak to a professional about this for some personal support, the Alzheimer's  Assn. has a 24 Hour Helpline 365 days a year.  They can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There is no fee for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive, have much information and can often assist us with our problem solving.

Let us know how you are and how things are going.  This will take some time, but it will get situated.  One thing a Social Worker told me early on in my mother's refusal of all help; "Sometimes there comes a point where you can do nothing except wait for the next shoe to drop and it will; at that point you can then take the necessary steps to get your mother to care assistance."

Let us know how you are and how things are going; we will be thinking of you and your family.

J.

ReallyScaredSon

Thank you all for the helpful feedback, especially Jo C., I really appreciate your very detailed and thoughtful reply.

I just got a call from my aunt, who is at my parents' house right now, my mom is having another episode.  I briefly heard my mom sobbing in the background.  According to my aunt, prior to the crying, she was angry, and hitting my dad.

My parents are in the central Illinois area.  They are in a weird situation, as they live in a rural area.  Their address is for a town in Peoria county, but they technically live in Fulton County.  The "biggest" town in Fulton county, Canton (population 14k) has the nearest hospital (Graham), and is about 12 minutes from them.  The next nearest non-tiny town is Pekin, about 20 minutes away, which is in Tazewell county.  Peoria is about 35 minutes away and has three hospitals.

I am searching the web but unable to find any ERS number for Fulton county.  I am tempted to encourage a little white lie and just say they are in Peoria county to hopefully access their ERS.

My aunt did call one of the Peoria hospitals (Proctor) to see about an emergency psych eval, and the person who answered the phone refused to give any information over the phone.  She said "we won't turn anyone away" but completely stonewalled my aunt on any more information.

The plan for tonight is to try and get my mom calm.  Tomorrow, I hope my dad can call mom's PCP and get a psych eval order in place.  My wife and I are going to make calls until we find someone who will give some guidance on what to do during the next episode.  I think in the last two to three weeks, she hasn't gone more than 36 hours without one of these episodes.

harshedbuzz

RSS-

Where I live, the Area Agency on Aging suggested the following-

1. They gave a list of area hospitals that have a geripsych wars/service- if we called an ambulance for transport, we would ask to be taken to one of those ERs rather than the nearest one. One of those hospitals is in the southern part of our county, one is in a neighboring county and the third is across the river in a neighboring state. 

2. The AAA gave us the phone number of these 3 units which would allow us to confirm an available bed before transport and alert them to our pending arrival. 

I'm not sure if this is something done where you live, but it's worth checking out. 

Good luck in all of this. 

HB

MN Chickadee

Yes if you can work with the doctor ahead of going in it may be a better experience. The PCP may be able to arrange admission ahead of time to the local hospital to have her transferred from there or have some contact with the with them as to what the plan is so she isn't at the whim of random people on duty who are unfamiliar with this. Peoria is large enough it probably has some options for senior behavioral health, but even if she has to travel a long ways it is likely worth it. Usually a person stays a few weeks and visiting by family members is extremely limited in these settings even without a pandemic so it isn't like you all have to be very close by. The priority must be her medication management and getting stable in order to return to life at home, so whatever it takes. The Aunt might take some video or audio recordings of the outburst to document the behavior in case there is doubt as to how necessary this action is.

mommyandme (m&m)

As far as respite care, you’re right.  Hospice may have beds that can help with a short respite stay if your LO is admitted to their care, at least that’s my experience on it.  As far as NHFs and the like, many offer a respite stay but mostly for at least two weeks or more.  Can be costly but I’m sure we’ll worth it.  I have that in my back pocket when the time comes for a longer rest than the few hours I get here and there.  

I hope you can get her into a geriatric psych unit soon.  Wishing for peace to you and yours soon.  

Emily 123

RSS, I just want to say that even though things feel out of control you are making progress in getting your mom the care she needs, and relieving a lot of stress for your dad. No matter what your mom says or thinks, being trapped by her fears and paranoia without a way to deal with them has got to be very scary.  Getting her into care where they can slow down the loop she’s in will be challenging but worth it. Hang in there.