Can't get anyone to help us

kab2022

UPDATE - I reached out to our complex care manager who gave me some places within IL. She also reached out to my mom’s PCP.   PCP is now starting a referral process for a Geriatric Psychiatry facility within IL about an hour and a half away. This is GREAT news however my question is how do I actually get her to go…I’m not sure if it’s outpatient or inpatient yet ( I’m waiting for more details) she doesn’t think there’s a problem and she’s still not talking to me. I’ve sent her a card with a letter (like suggested on another one of my posts) She received it this week (I have USPS Informed Delivery on her address) I tried calling again - no change at all. 

I’m hoping my brother will be able to get her to go if she won’t allow me to do it - I’m just not sure how have him bring it up to her or if at all. Any suggestions? Thanks! 

Ive previously posted that my 72 yo mom has dementia. She lives at home and is mostly taking care of herself (ie bathing, eating, cleaning etc) However, she is adamant that there isn't anything wrong with her.  She will have almost psychotic breaks/episodes where she will get so very angry at someone but then forget all about it shortly afterwards. 

Most recently (last night) she was kicking and pounding on the front door of my siblings house while his pregnant girlfriend and 2 yo son were inside - she was yelling and screaming "I want my keys - I know that you have them inside"  My mom lost her car keys and thinks that we stole them from her.  His girlfriend and my nephew were very scared so we told her to call 911 so an ambulance would come and check out my mom.  The police also came as they've been called before from my aunts for a similar situation where she got aggressive with my aunt.  Anyway, they took her to the hospital to check her out. (By the time she got there - she forgot all about it and kept asking why she was there??) 

We asked if there was anything we could do to have her evaluated because we do not feel that her neurologist doing anything except increasing her medications.  The hospital said that they couldn't do anything it was dementia but they could transfer her somewhere else for an evaluation.  The place ended up being 3 hours away at a geriatric psychiatric facility with very bad reviews in the paperwork that they gave us!  

We declined and took her home .... we are not sure what to do next as it doesn't seem like anyone will help us.  I've spoke to Alternatives for possible "Homemaker" services but I am not sure she will let anyone in the door since she doesn't believe that anything is wrong.  I live 4 hours away and she wont speak to me (she thinks that she took me off as POA because I was stealing from her and I am upset with her - which of course didn't happen)

My siblings all there near her and we are all in agreement that she needs immediate help - any suggestions?  The ER told us that there were no other facilities in IL that would take her? I don't understand that - how could that be possible? I drive by at least half a dozen "assisted living" communities in a 3 mile radius by me.  Can anyone please tell me why they would say that there was no one that would take her for an evaluation in the entire state?  

Are these episodes normal where she forgets all about them only minutes later?? She kept saying stop lying to them-I would never do any of the things that you are saying - stop lying.. please anyone? 

terei

You had your opportunity when she was to be admitted to a geri psych unit.  Not allowing them a chance to evaluate her + adjust her meds so that they would be effective in controlling her behaviors was a mistake IMO.  You say she has a neurologist who has prescribed meds…is she taking them?

No AL or MC facility will accept someone with the the acting out behaviors that you are describing until those behaviors are under control. They are not equipped to prescribe anti psychotics + monitor her to see how they are working + they will not tolerate aggression.

The next time you have to call she should be admitted to geri psych.In the meantime, try to contact the help line here, or your city/country senior social services.  They may be able to visit her + suggest placements.  

Everything you describe is not uncommon in many dementia cases + proper meds are what is required

[Deleted User]

The user and all related content has been deleted.

harshedbuzz

kab2022 wrote:

 she is adamant that there isn't anything wrong with her.  She will have almost psychotic breaks/episodes where she will get so very angry at someone but then forget all about it shortly afterwards. 

This is anosognosia. It's a condition where a PWD is unable to appreciate that they have had a cognitive shift or loss of abilities. She's not in denial, she doesn't know. Her reality it that she is the same as ever. 

Your task is to keep her safe by whatever means necessary using work-arounds. 

Most recently (last night) she was kicking and pounding on the front door of my siblings house while his pregnant girlfriend and 2 yo son were inside - she was yelling and screaming "I want my keys - I know that you have them inside"  My mom lost her car keys and thinks that we stole them from her.  His girlfriend and my nephew were very scared so we told her to call 911 so an ambulance would come and check out my mom.  The police also came as they've been called before from my aunts for a similar situation where she got aggressive with my aunt.  Anyway, they took her to the hospital to check her out. (By the time she got there - she forgot all about it and kept asking why she was there??) 

This is a later stage behavior. She's probably not safe living alone any longer. Her living arrangements need to provide care and safety for those times when she's at her worst not when she seems to be OK at home. Given that police have been involved twice, you risk involvement with APS and potentially losing control of the situation if they don't feel family is acting with the urgency this requires. If the state gets custody, they will sell off her assets and pick a facility for her. 

We asked if there was anything we could do to have her evaluated because we do not feel that her neurologist doing anything except increasing her medications. 

Beyond a couple of medications that seem to help some people function better for a time but don't slow the disease progression, they don't have anything to offer except psychoactive medications to relieve the anxiety and agitation she is experiencing.

The hospital said that they couldn't do anything it was dementia but they could transfer her somewhere else for an evaluation.  The place ended up being 3 hours away at a geriatric psychiatric facility with very bad reviews in the paperwork that they gave us!  

This was your chance to have her re-evaluated by the specialists most experienced in this kind of behavior and medication. Getting a bed locally can be a challenge at times even in areas that are well served medically. 

We declined and took her home .... we are not sure what to do next as it doesn't seem like anyone will help us.  I've spoke to Alternatives for possible "Homemaker" services but I am not sure she will let anyone in the door since she doesn't believe that anything is wrong.  I live 4 hours away and she wont speak to me (she thinks that she took me off as POA because I was stealing from her and I am upset with her - which of course didn't happen)

This sounds difficult. She sounds like she might need 24/7 care which could be prohibitively expensive. 

My siblings all there near her and we are all in agreement that she needs immediate help - any suggestions?  The ER told us that there were no other facilities in IL that would take her?

Do you mean instead of the geri psych hospital? For someone agitated enough to end up in the ER, a geri psych stay to stabilize her would be a first step before placement in an appropriate setting. 

 I don't understand that - how could that be possible? I drive by at least half a dozen "assisted living" communities in a 3 mile radius by me.  Can anyone please tell me why they would say that there was no one that would take her for an evaluation in the entire state?  

Most evaluations for behaviors are done out-patient with family providing transportation to appointments. In an urgent situation, a geri-psych hospital would be an option. AL and MCFs provide residential care. They do not offer medical evaluations of dementia or create treatment plans for extreme behaviors even if they have a geri-psych affiliated. A hospitality-model AL would be a poor fit for your mom at this point. I would assume she'd be a candidate for a secure MCF.

Are these episodes normal where she forgets all about them only minutes later?? She kept saying stop lying to them-I would never do any of the things that you are saying - stop lying.. please anyone? 

She has dementia. Her short term memory is not reliable. She's not lying; she doesn't remember. If it is important to get doctors to understand what's going on, make a video of her acting out so they can see it.  

HB

dayn2nite2

The chance was the geripsych 3 hours away.

You will have to wait for the next time she becomes aggressive, call 911 again and this time agree to have her taken to the geripsych.

What do you think her neurologist can do for her?  Dementia is incurable and terminal.  Nothing can help her, the only possible thing is that a psychiatrist could work with medications for behavior.  Again, geripsych unit.

M1

kab, she's going to have to be admitted somewhere, and right now with staffing and beds both tight it may well have to be three hours away or more.  I know that sounds ridiculous, but that's just reality right now.  Sounds like you all need it:  she needs medication adjustments, and as already said:  NO facility will touch her until she's stable.

Quilting brings calm

The evaluations that assisted living and memory care facilities do is to determine if the person would  be a good fit to become a  resident. Things such as how much supervision and physical assistance is  needed.  Although they do help give out  medications prescribed by doctors, they do not determine what medication is needed or prescribe it.  They do not do medical type evaluations. So the number of assisted living or memory care  facilities doesn’t come  into play for your mom at this point.    Your mom needed the care of a geriatric psychiatrist to determine appropriate medications to treat her behavioral symptoms.   With the behavior your mom was displaying, that is done  at a geriatric psychiatric facility. Only after that could a decision  be made about placement into assisted  living, memory care or skilled nursing.

kab2022

Thank you for all of your comments - she was evaluated for infections via blood/urine. All came back normal. My brother does make sure there’s food and has been scoping out all things there - she showers, eats and she is taking her medicine which includes an antipsychotic. I’ve been doing her taxes and other paperwork for a couple of years. My dad did all of that before his passing so I started at that time. 

I definitely feel like we missed our chance. My brothers said the doctor made it sound like a permanent “home” placement with no input by us which scared us at 2AM especially with a review on the paperwork that said don’t sent your family member here. It was an emotional night and it sounds like we just made a mistake. Is it too late? I’m sorry I honestly just don’t know what to do next now … I think I’m going to call her PCP for assistance to see if she can help with an evaluation. 

MN Chickadee

People see geriatric psychiatrists on inpatient or out patient. If you can find one to take her to in an office setting you may be able to avoid a psych unit. Otherwise the senior behavioral health unit (geriatric psych) is the place to get her admitted. They don't keep people long term, most people stay a few weeks to find the right meds and then are discharged to home or a memory care facility. The harder cases may stay a bit longer. The closest geriatric psych unit to me is over 2 hours away but for the people I know who have needed it, it has been worth the hassle. One friend's dad even had to be transported there by ambulance but still worth it. Sometimes it is the only setting that will fit the bill. Nursing homes, memory care, and assisted living are usually not equipped to do this kind of stabilization, you need the psych unit first. Some long term care homes do have a visiting geriatric psychiatrist who does rounds there but that usually for more routine things, small tinkering of meds etc. Visiting is very limited in the psych units anyway so it's not like you would be spending lots of time there with her, once she is transported the distance is not as big a deal as it sounds. 

It sounds like she is not safe living alone. If she is admitted to a hospital or psych unit then that is your chance to move her to a locked memory care facility upon discharge. Make SURE you tell them you cannot care for her at home, that placement is needed. They cannot force you to take her nor discharge her to an unsafe place. I would be researching memory care facilities and getting on wait lists right now while you have time. As HB pointed out you do not want APS involved if you can help it, and the fact that she is wandering around having psychotic episodes means it's going to end badly one of these times in one way or another. It's probably time for memory care. If you haven't, see an elder law attorney to plan out paying for her care and if/when to apply for long term care medicaid assistance. There are strict rules about the spend down and they vary by state so get legal advice in her state. I know this is a very stressful time. Good luck and keep us posted. 

Martin Robbins

My mother's Alzheimer's caused her to behave very badly.  Within an hour of taking her 100 mg of sertraline (Zoloft) she was pleasant as could be.

I once had my mother taken by ambulance to a geriatric psych unit.  I regreted it terribly.  I asked for an evaluation, not treatment.  When they discharged her two weeks later, she was doped-up with quetiapine (Seroquel).  That's the last she ever had quetiapine, and never needed it.  CAUTION: Once you turn a person over to a psych unit, you may pay hell getting them out unless you have medical power-of-attorney.

There is a drug called olanzapine (Zyprexa) which immediately cured my mother of hallucinations that were driving her crazy and making her physically ill with despair.

Lastly, in the year 2000, when my mother's dementia worsened considerably, her PCP told me to get her to a specialist.  She recommended a neurologist.  Nothing doing.  It was November and the doctor I chose could not see her until April.  One large, local, hospital system wasn't even accepting patients with dementia.  After a day of searching, I chose a geriatric specialist at a large medical center's geriatric center.  The person on the phone making the appointment asked me how I chose this particular doctor.  I said his online bio convinced me.  His reply: 'Well, you picked a good one."  He avaluated her, but he only consults.  Has no patients per se.  But he remains a frequent correspondent of mine, providing recommendations, to this very day.

You might try the large universities for help.  My geriatric specialist works from a large, local university medical center.