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Alzheimer's and The Baker Act - involuntary hospitalization
alz+
Posted: Monday, July 12, 2021 10:54 PM
Joined: 9/12/2013
Posts: 3608


 https://coping.today/for-people-with-dementia-beware-of-the-baker-act/

I received another call today from clinic asking/telling me I need to see a psychiatrist. The call unnerved me. Everything sounds like someone trying to persuade me that I am in desperate need of help.  I found this link searching for POSITIVE use of psychiatrists for Alzheimer patients. Maybe there are some who have a special treatment that no one else has heard of, yet. They seem to be projecting "a harm to self or others" thing onto me, to me this is what ALZ alone in wildfire country can't see can't hear looks like and that's doing really good.

My dog died last Friday and I have been in that shock world, taking it easy at home. Emotions are not mental illness. I witnessed abuse when I was in a hospital last year. I experienced the damage of the deep misunderstanding of a person with dementia feeling afraid, unsafe for good reason. No one believes you after awhile.

The link above has some stories from caregivers who had experiences when their LO was put in a psyche ward. I read many of them. Very painful, I can see how my mistrust of the Unnamed Person who called social services to visit me could be made to look like crazy.

The veterinarian was wonderful. I got to lay on floor with my dog and speak into her ear while she passed on. The vet reassured me, she was comfy, very gently saying that it was the right time and my dog was at ease and at peace. Nothing scary. Like medicine ought to be.


Michael Ellenbogen
Posted: Tuesday, July 13, 2021 7:29 AM
Joined: 11/30/2011
Posts: 3891


I am so sorry for the loss of your dog. I know how much he meant to you. 


Michael Ellenbogen
Posted: Tuesday, July 13, 2021 7:33 AM
Joined: 11/30/2011
Posts: 3891


Do you want me to talk to the people who are calling you. I can have my wife there as she is nurse and tell them were to go if as they don’t know what they are talking about.


KawKaw
Posted: Tuesday, July 13, 2021 9:27 AM
Joined: 11/22/2019
Posts: 401


I grieve with you for the loss of your beloved friend.

I also understand the anxiety that can erupt when people aren't believing you or seeming to understand what you are saying.

How to navigate health care when you feel you cannot trust the people who provide it?  Especially when you need some care for aspects of your life?

Sometimes, I use a technique that requires people to specify what they mean or to back off.

"Are you worried that I am going to harm myself or others?  Why do you think so?"

"Exactly why are you advising I speak to a psychiatrist?"

Another thing you can do is to replace the word "paranoia" with "anxiety" when speaking to medical folk. People seem to understand anxiety with more compassion than paranoia.

"I have anxiety when I don't feel understood." Or "it makes me anxious to discuss this with a stranger." 

Something along those lines or something more specific to your situation.

I think many medical folks do not realize that many people all over the spectrum have great difficulty trusting them.  Trusting people to provide proper treatment with understanding and compassion.


Lane Simonian
Posted: Tuesday, July 13, 2021 11:35 AM
Joined: 12/12/2011
Posts: 4982


I am saddened by the loss of your wonderful dog, alz+.  It was a blessing to have such a compassionate veterinarian by your side (and for you and your dog to be together).

I am glad that you have help here on how to deal with some members of the medical profession.


alz+
Posted: Tuesday, July 13, 2021 11:55 AM
Joined: 9/12/2013
Posts: 3608


thank you all for your wonderful replies.

I woke up today heart racing and body shaking. Counselor out of town until next week.

I did ask what was purpose of NP's calling people to check on me and they all say exact same words, "The Anonymous person who is worried about your welfare has the right and obligation to call authorities to make sure you are ok".

Only sharing some of the horrors now because this happens so much to people not as verbal as me at this point.  My daughter is aware of what is happening and is coming in 2 weeks and can call clinic today - but of course that scares me too as they can call me "paranoid" and whatever they want. I was misdiagnosed plenty before finding early onset ALZ. I thought I was through with that.

I want a lawyer.

***

My dog Betty sensed distress and would sit very quietly next to me, or Habib, or anyone, when distressed. She was gentle soul. In the middle of her last week of life I was burdened with all this extra stuff. I'm hiding in trailer, do not want to speak to anyone.

My life has been sabotaged by doctors before. Just a head's up. I read comments once about caregivers spewing how much they hated the person they "cared" for and was scolded for trying to explain to them how what they were seeing in this person was FEAR coupled with boredom and anxiety about having someone who dislikes them in charge of their lives.

Insert swear words. People get some sort of bullet proof diagnosis. Mine from a University Neurologist specializing in dementia, an ALZ specialist, a Global Research group I was part of - was not enough.


Iris L.
Posted: Tuesday, July 13, 2021 11:58 AM
Joined: 12/15/2011
Posts: 17430


I am sorry you lost your beloved companion, Alz+.  You gave her a good life. She will be waiting for you at the Rainbow Bridge.


The vet came to the home?  That was a relief!  You did everything to keep her from being scared.  She died peacefully.


Are these people talking with your daughter?


Try to get some rest now.  


Iris

 

 


alz+
Posted: Tuesday, July 13, 2021 12:29 PM
Joined: 9/12/2013
Posts: 3608


No, we went to her office. She had special room dedicated to euthanasia. They removed all the potential problems as people panic at having their loved animal put to sleep.

****

Further info on gaslighting patients-

what is happening to me started in Florida with a neurologist who told me I was pretending to have vision changes and trouble with stuff and wanted to send me to a psychiatrist. This guy them called any other neurologist I saw and told them I am attention seeking. I found a doctor who believed me (none of them had my vision checked) and suspected MS. Once I realized there was no help I started modifying my life.

https://me-pedia.org/wiki/Medical_gaslighting  

I never heard of this as a behavior before, just thought it was a man thing. 

So I walked and stuff and calmed down, now realize the most important thing is I never quit believing myself that something was off and it wasn't "attention seeking" behavior.

They were really upset when I could name so many words beginning with "F". They don't like that I just want to use what works with least side effects. My daughter reassured me we will be done with them within 3 weeks. I can breathe again.



dayn2nite2
Posted: Tuesday, July 13, 2021 12:32 PM
Joined: 6/20/2016
Posts: 2774


The Baker Act is Florida-specific.  If you don’t live there, it doesn’t apply.  I’m sorry about the loss of your dog.
alz+
Posted: Tuesday, July 13, 2021 7:19 PM
Joined: 9/12/2013
Posts: 3608


dayn2nite2 wrote:
The Baker Act is Florida-specific.  If you don’t live there, it doesn’t apply.  I’m sorry about the loss of your dog.
 
 
It began in Florida, now most states have involuntary commitment laws. California does and part of that is anonymous reporting with mandatory holds.
"Baker Act" is term used nationwide for involuntary confinement usually in psyche wards.

****
I calmed down. My daughter took over my medical stuff. She called clinic and will take me to appointment with new doctor closer to me.
My cognition and abilities have been changed. People are noticing. It's ok.

Our trailer park now has an emergency plan and neighbor across street is responsible for me and woman next to me as we don't drive. We are to have Bug Out bags at front door until end of fire season and when the sirens go off to be ready in 7 minutes. We are having meetings about escape routes etc. This calmed me down a lot. I was responsible for impossible things.  
Habib brought me laundry to do, that calmed me down a lot. I was frightened. This is part of Alzheimer's. My daughter said she likes protecting me.

thank you for letting me tell my experience.

love and courage

Jo C.
Posted: Tuesday, July 13, 2021 7:26 PM
Joined: 12/9/2011
Posts: 11987


Dear alz+, there is no "Baker Act" in California, in this state, an involuntary commitment is called a, "5150."  An initial involuntary hold on a 5150 would be for 72 hours in order to assess the patient.

NOTE:  A person in California on an involuntary 5150 admission, has many rights and also has a right to have an advocate at no cost who is not connected to the facility. One can ask for this.

NOTE:  What are the ONLY reasons one can be held involuntarily on a 5150? They are:

 1.  The person is a danger to him or herself (threatening suicide or self-harm, etc.)

2.  The person is a danger to the safety of others

3.  The person is gravely disabled and by reasons of mental illness is unable to provide for his or her own shelter, clothing or food.   (Even homeless people cannot be held on a 5150 if they can seek shelter when the weather is bad.)

That is pretty much it. 

It is also true that a person on an involuntary or voluntary admission can refuse treatment and can indeed refuse medication as they wish.  This is the law.

If someone thinks you are a danger to yourself or others or gravely disabled, a crisis team would have already been sent out to assess the situation.

I do not know who those two women were who visited you; if they came as part of a crisis visit or why they were at your home; if they were a crisis evaluation team, they evidently did not find any reason for need for an involuntary admission; AND if they were a crisis evaluation team they should definitely have identified themselves cleary so that you understood that. They also should have left you identifying contact information.

That is all water under the bridge; do not dwell on that and make matters worse for yourself.

You know you are not a danger to others.

You are not a danger to yourself.

You are capable of having housing which you do; you are capable of providing food and clothing for yourself.  

Whoever referred you to the clinic may have been concerned on your behalf and wanted someone to ensure you were doing okay.

Kawkaw had some good advice on communications. Not good to use the word paranoid; the word anxiety is better and more accurate.  No need to go backward and dwell on details about years ago mental health professional failures, etc.

It is the here and now that is being measured.

When something untoward or troublesome comes up, I am careful when speaking on the phone to ensure my words are calm and logical as we never know when we are being recorded so I am ever so cautious and dear no matter how nice the other person may seem.

You have rights; if seeing a doctor for an assessment is in your best interests at all, you can speak of this with your daughter as she would be your advocate in your interests.

Remember; you have rights.   Much about this online.

Please do not feel you are about to be carried off - it does not seem from what you write that you fit the 5150 criteria.

Best and warmest thoughts being sent your way - keep in touch, we care very much,

J.


Jo C.
Posted: Tuesday, July 13, 2021 7:33 PM
Joined: 12/9/2011
Posts: 11987


Whoops!   We were Posting at the same time. I am so glad your dear daughter is coming to be with you and to go to an appointment with you; what a terrific advocate she is.

 Also dear alz+, I am so sorry for the loss of your beloved Betty.  What a sweet girl she was and I know how much you loved her; I am glad you were able to be with her  in love as she left for another realm.

 J.


Iris L.
Posted: Wednesday, July 14, 2021 6:47 AM
Joined: 12/15/2011
Posts: 17430


Alz+, I just now finished listening to a radio program about people like you.  The program was about anxiety and panic in people.  Due to various medical causes the nervous system becomes hyper-reactive.  The program discussed various methods a person cam use to tamp down the hyper-reactivity.  Deep breathing was mentioned.  Also listening to soothing music.  


Another method is right up your alley.  It is recommended to write out all that bothers you, then tear it up.  This will allow you to acknowledge your feelings without dwelling on them.  This sounds workable for you.  You have a way with words. 


I agree, don't focus on what happened to you in Florida, focus on now.  Focus on calming and soothing yourself.  Betty was an amazing solace for you.  Now you have to rely on other methods.  You had methods in Michigan, you can use the same ones or learn new methods in California. 


 California is an excitable state because there  is always so much going on.  But we all have to learn to use our boundaries and limit the madness.  


Please be aware that the vast majority of professionals have no idea of what you are talking about because they are not used to speaking directly to people with dementia.  You have to be careful what you say to them.  You have to be clear in your own mind, what you want from them and what your expectations are from them.  Don't expect much.


It's great that you know your disaster plan.  You live in a community of older women where you all can look out for each other.  Believe me, this is truly a blessing!  


Iris


 


jfkoc
Posted: Wednesday, July 14, 2021 1:10 PM
Joined: 12/4/2011
Posts: 20094


agree..I think it would be best to be under the care of a Dr who routinely sees PWD that is why I did the research with the AA to find Drs near you. I hope you shared the information with your daughter.
jfkoc
Posted: Wednesday, July 14, 2021 1:20 PM
Joined: 12/4/2011
Posts: 20094


Here is another resource I would at least consider. They have an office near you;

https://www.councilonaging.com/services


alz+
Posted: Thursday, July 15, 2021 11:10 AM
Joined: 9/12/2013
Posts: 3608


what? you sent something to "my" clinic?

how would you know what clinic I go to? I must be reading this wrong. I fled my home due to fear of more people trying to manage my life.

my daughter sees everything I see and has access to everything. I must have read this wrong, please correct me.


alz+
Posted: Thursday, July 15, 2021 11:21 AM
Joined: 9/12/2013
Posts: 3608


People who think California does not have involuntary commitment laws...

speechless. This has turned so inside out I am withdrawing from posting more info.

Anyone with dementia can be placed for 72 hours in lockdown by people who get to remain anonymous, one such psyche ward is notorious for abusing the people there.  People have committed suicide after being held there. No phone, no contact, isolation, doped up, alone...

I am gone. My cognitive ability has been crushed. Do not contact my family or clinic.

this is part of Alzheimer's. 


jfkoc
Posted: Thursday, July 15, 2021 3:04 PM
Joined: 12/4/2011
Posts: 20094


I did not send anything to "your clinic". I do not even know where it is or the name of it. 

The concern that I had was based on your posts. It sounded to me that you were not seeing professionals who had any idea/training about AD. 

Sorry, my post was unclear. I contacted the AA office in your state and asked for resources that they knew of and shared what they sent me.

I assure you that I am not now nor will I ever try to manage your life.

If you like your present care and feel you do not need anything else now or in the future please ignore my posts with resources that I thought could be helpful. 

Please do not stop posting because of an unclear post from me.


Michael Ellenbogen
Posted: Thursday, July 15, 2021 3:46 PM
Joined: 11/30/2011
Posts: 3891


I trust JFKOC as she only means to help you with what she did.
Iris L.
Posted: Friday, July 16, 2021 3:12 AM
Joined: 12/15/2011
Posts: 17430


This is a test.  I posted a long message and got an error message.
Iris L.
Posted: Friday, July 16, 2021 3:17 AM
Joined: 12/15/2011
Posts: 17430


Alz+, I agree, you are in a state of shock, after all that has happened to you in the past two weeks.  You need to decompress.  You say you are taking it easy.  Keep that up!  People like us don't gave the bounce-back we used to have.  When you feel ready, resume posting.   We want to hear from you.  Everyone here cares for you.  

Iris


Jo C.
Posted: Friday, July 16, 2021 6:38 AM
Joined: 12/9/2011
Posts: 11987


Dearest alz+, please do not stop Posting; please do not stop coming here to talk with us; this is a safe place; you have misunderstood what transpired.

PLEASE read the following paragraphs slowly and carefully one at a time.  That may put your mind at more ease and let you begin to decompress from the fear and panic state you now find yourself in.  You are safe.

Breathe.  Remember to slow down and breathe.

This appears to be a very difficult time for you because of the referral someone made a couple of weeks ago to check on your welfare which has made you feel helpless and put you in fear and on panic alert.

 I also wonder when the last time was that you had yourself checked for one of those silent UTIs; you have a long history of having  UTIs - that can cause a lot of emotional upheaval until treated.

I am so sorry these feelings are happening to you.

 NOTE: jfkoc did NOT contact your clinic; she does not even know a thing about your clinic or  even who you are.

 Also remember none of us know who you are or what your name is.   You remain anonymous as most all of us are

None of us know each other's names; Iris is not Iris, that is a false name she uses for online purposes.   

 Please hang on and as Iris said, try to decompress.  You are safe here. 

 Do not let fear and panic overcome you.   Remember:   You do NOT fit any of the criteria for involuntary committment. 

NOTE:  When jfkoc said she contacted "AA" for names of providers in your geographic area, AA is the abbreviation for the, "Alzheimer's Association."   We need to be more careful using abbreviations; sorry if that misled you.  As said, no one knows who you specifically are or where you specifically live.  You remain anonymous.

 ************************************************************************

You know me from the years we have been here; you know I care about you.  I want to share with you to recall that I am an RN; and I have served as Administrator of Patient Care Management in various med centers for years. 

 I worked with families and persons with dementia.

 I have had four Loved Ones with dementia.

 I have worked in hospitals that have Geriatric Mental Health Units.

And dear alz+, I had a very close Loved One with dementia who because of a severely extreme condition had no alternative but to receive short term care on a GeriPsych Unit not in any one of the hospitals I had worked with.  NO WAY did my LO receive care as you describe it and the care was very short and kind.  Visitors and phone calls were available and permitted.  No isolation.

 That LO needed care in GeroPsych because the regular hospital units had no way to provide the care needed.  

 No way have any GeroPsych Units in any facility conducted their care in the way you fear.   You may have somehow got ahold of bad reading material and in your present state those false beliefs are causing you great upset.

 NOTE:  Your daughter is in contact with you and will be with you soon. She is your loving advocate; that is safe.

 *********************************************************************** 

 NOTE:  Per your writing that needs correcting, Anonymous"People" cannot admit anyone to an involuntary psych admission which you call, a "lockdown."

 Only a psychiatrist can actually admit a person to a psych unit or GeroPsych Unit in the State of California; that is the law and I can attest to that and it has been my experience as a professional in the medical field and personal knowledge of such units both private and state.

 A police officer or physician can refer a person to a crisis team or psychiatrist IF the person is threatening suicide or is violent and a danger to others or to themselves; BUT the psychiatrist must assess the person and determine whether or not an admission is necessary.  Not everyone is considered a necessary admission and only a psychiatrist on staff of a particular hospital can make such an involuntary admission.

 Sometimes a family member can ask a doctor or psychiatrist that is seeing a patient to assess for a need for geripsych care IF that person is a danger to themselves or others; BUT it takes a psychiatrist to assess that need and to admit. 

 It is untrue that "anyone" with dementia can be "locked down" by "anonymous people."  Not true at all.  As said, any admission is done ONLY by a named psychiatrist and all is up front.  No anonymity of admissions.  State law.  This is given orally AND in writing.

 I have knowledge as a professional - State Law requires a person on an involuntary admssion by being a danger to self or others or so gravely disabled by mental illness they cannot provide housing, food or clothing. Remember, you do not fit any of those categories.

 You have gone through some scary and also deeply sad circumstances lately.  First someone asked for a wellness check to ensure you were okay; that has been the genesis for the fear and panic you are experiencing.  Your imagination and fear have woven a false fabric that is impeding your wellness.

 Secondly, you have lost your beloved Betty; grief also has a big impact.

 You expressed that you are feeling the progression of cognitive wavering - that seems to be really frightening you.  Those changes may be secondary to multiple different issues or a combination of them:   stress from the emotional upheaval from someone calling for a wellness check on you and from grief of loss.

 NOTE:  And/or it may also be secondary to medication or substance complications which can happen even after taking substances for a long time - as we age, our bodies change in their tolerances to meds and substances.  This may need to be assessed.

NOTE:  You may also have a "silent" UTI contributing to this or other physical issues with the body as we all have happen at one time or another - a good checkup with labs would help to identify any of these that may be causing or contributing to this.

 You have a long history of UTIs, it may be time to have that checked. If that exists, having it treated may well bring you much relief.

 *************************************************************************

 NOTE:  No one here knows who you are - no one knows who your family is - no one here knows what or where  your clinic is - - - - you and they are anonymous.

 Please do not stop coming here to talk with us; we are safe.  Please do not let panic drive you with false thoughts - that has been happening, so do try to self-soothe and calm with any decompressing methods that have helped in the past. Please get a silent UTI checked out.

We are here for you and we truly do care very much.

Courage, love, and so hope to hear from you soon, we are concerned for you and will wait to hear,

 J.

 


Michael Ellenbogen
Posted: Friday, July 16, 2021 7:30 AM
Joined: 11/30/2011
Posts: 3891


While I know Jo C. is trying to be honest she does not know our relationships and names outside of the forum. So that is why she is wrong on those statements. So please do not take that the wrong way as you know I always have your back and so does the folks here.


Iris L.
Posted: Friday, July 16, 2021 9:42 AM
Joined: 12/15/2011
Posts: 17430


Michael, I believe Jo C is saying that she does not know our names and relationships outside this forum.  I don't see where she is wrong.


I had explained to Alz+ what could happen after her initial visit, and it happened.  Social workers came out.  Alz+ seemed to have rapport with the counselor she spoke with on the telephone.  I told her they needed to see her in her home environment to see that she was a senior trying to live independently, not a drug-seeking person, and that she has a problem with recurrent shingles.


As a former member of the medical community, I know that primary care doctors refer certain patients to Behavioral Health, which is the name for Psychiatry.  There is a procedure for referrals and the doctors and everyone else have to follow it.  The procedure may seem complicated and even intimidating.  That's why I suggested that Alz+ allow her daughter to interact more and advocate on her behalf.  In order to do that, she will need to sign the HIPPA consent forms and whatever else her medical plan has for her.  Before a crisis situation.  After a crisis it may be too late to sign papers and even more people will get involved.


But the priority now is for Alz+ to decompress.  I learned a very crucial concept from Alan in Colorado.  Stress and anxiety reduce our cognition by HALF!  That's why I have made it a priority for me to avoid getting myself stressed out, from whatever cause.  Even the news stresses me out.  I use Alz+'s advice on being in nature and connecting with pets to destress me, along with music and deep breathing.  All of these work for me.  


The caregivers regularly post about how stressed they are from being around us.  PWDs are stressed too but most cannot verbalize well.  They may say harsh things or do what's called "acting out" behaviors.  It's definitely challenging!  Distressing requires a great deal of thought and a great deal of effort.  And it's worth it!


This is how I came up with the idea that PWDs need to live in a bubble--their own safe and secure and nurturing bubble.  A sanctuary.  Alz+ seems to have that at her trailer park with the other senior ladies.  I have that here in my condo--my little bubble.  My wish would be for all PWDs to have their own sanctuary bubble.


That's all for now.


Iris 


alz+
Posted: Saturday, July 17, 2021 9:16 AM
Joined: 9/12/2013
Posts: 3608


thank you all for responding.

Iris, I understand your language and always get comfort from you and feel smarter after reading your posts.

People report others and remain anonymous to the one who gets the visit.

Pointing out every "error" in my writing about the 5150 law terrified me. Never the less,  people can be (and are) rounded up because a person WHO GETS TO REMIAN ANONYMOUS to the person incarcerated happens every day.

Knowing "one person who was treated very wonderfully" is irrelevant to me. I have been reading about our local lock up for 2+ years. I was a victim their abuse 2 years ago. 

being told what I live through is mistaken is exactly why I will withdraw from further posting. 

warning others, abuse of people with ALZ goes on in hospitals and they can not report it and their family members who I personally saw involved in the abuse, sanctioned it. The daughter of the woman I saw tortured and roughed up and painfully drugged and left uncovered on her bed had tried to stop by efforts to defend her by telling me "she did not obey the nurses. She was rude to them." I told her to go to hell.

When the crew - who had obviously used this method before - left our room I was able to stretch my IV tubes enough to get a blanket over her. I talked to her for an hour in soft voice and held her foot which was as close as I could get to her until she fell asleep. I was up all night shaking. They repeated this in the morning with POLICE in riot gear and guns. As I called into a pharmacy the pharmacist heard the screaming ver the phone. I told him what was going on and he said "jesus f++king christ!" My doctor came to tell me I could go home and he witnessed this and fled. The nurses came back and started pulling lines out of mv veins to get me out of there. I was wheeled past 6 foot cops wearing bullet proof vests and armed and told them to go to hell.

I reported the story to my daughter who was waiting for me. I called the hospital and reported what i witnessed and endured. They promised to retrain their staff. I will never recover from abandoning my room mate, 5' tall. 100 pounds, snow white hair, a sweet heart who seemed familiar to me.

I called a lawyer and never heard back. Then I was sent to the place you are dreaming is a place to find peace. I was verbally bullied and threatened. told I would be picked up from home 5 days a week and brought there to learn how to behave for 3 weeks. I could not miss a day or I'd have to start over. I would be with teens with drug and suicide issues.

Read some real stories of what happens in these lovely care facilities. read reviews of these places.

You telling me fairy tales you like to believe. I will never recover from what they did to me, how they with held pain meds to punish me for being able to speak so I must have been "pretending to have dementia".

No one believes us. Because my room mate who was brutalized and who I had to leave behind is on my mind every day since I will never forget this. I documented it all and tried to find legal help. I gave up because lawyers would not respond to me.

People who say they don't know where i live have my name and address. Being lied to is inflammatory.

There are thousands of stories online of people who come out of these wonderful places you imagine for respite. Many never speak again. They are loaded with anti psychotic drugs which does the job their caregivers wanted. Some have broken bones, some left with no blankets to punish them for not "behaving right", My family did this to my father and my Dad punched out a couple people trying to restrain him. My mother hated that MY FATHER MISHAVED AND MADE HER LOOK BAD.

I do know what I'm living through and what goes on. You scare me that as advocates for people with dementia you pretend it is fairytale land. We can not speak for ourselves, no one will represent us in court. We can not advance a massive change.

and they can shove their ineffective billion dollar new pill which is ineffective - but they will give it to us anyway.

But hey, the one organization supposedly representing us (but really the caregivers) refuse to promote the one thing that is cheap and effective.

I understand to the best of my ability that this is american medicine and you all have good intentions. But you are unaware and will remain so because most of us can not speak.

I will not take it personally but I will not take delusions about what happens to us when left alone as fact. 

I left my home, am not answering calls, will speak to counselor I like over phone next week. People who are so certain they are "just trying to help" scare me. Then I am told I don't understand. 

You are doing your best with the information you have, but half the country won't get a vaccine cause they think it is poison. 

Time alone is what will help me. And I am not interested in the "helping" alz information places as they don't know what they are talking about when it comes to interpreting our new language.

we are not angry, we are terrified. we are permanently damaged by being treated in ways based on false assumptions. alz.org is for caregivers who believe in waiting for a magic pill and patting each other on the back for how much they suffer helping us.

They do not promote proper environment and other things that in MY OPINION really help.

 I am getting help in my own way. Right now this board is not helpful. I will continue to read comments in online discussions elsewhere and make suggestions to caregivers who are misreading their burden person's behavior. You won't shame me for trying to wake up one person into being kinder to their disabled burden.

I knew who sent the investigators to my home, the social worker repeatedly said "The person who calls them remains anonymous" to the victim of their call. I used her name throughout the conversation just to stop pretending and stop being examined by someone who didn't know me or how I manage to live alone. 

This is why I don't come here.  The doctor stopped me from preventing repeated bouts of shingles by using an Ativan. This is not a panic attack. This is outrage and being petrified of what will happen next.  This is not necessary. 

I have written lawyers about this, the hospital can keep files secret, their behavior secret, and there is a need for legal representation for those of us abused. Have you not seen police roughing up old women with ALZ? thrown in the dirt, left for hours on a bench? Killed, shoved around, tormented? I was eye witness. Stop telling me I am mistaken and whatever. 

For those of you with ALZ you are not wrong. You are just left on your own to figure it out while they use bad information to "control" you.

what you perceive is wrong. we speak in metaphors. We are afraid of you because we know you do not have a clue. 


jfkoc
Posted: Saturday, July 17, 2021 1:20 PM
Joined: 12/4/2011
Posts: 20094


"People who say they don't know where i live have my name and address. Being lied to is inflammatory."

 

I know who you are and I know where you used to live because you gave me that information when I asked if I could send you some art supplies. That information plus your going back and forth to that address leads me to believe that I still know the area where you are.

 I did not lie so please do not tell me that my statement was not only lying but inflammatory.

 

I was a 24/7 advocate for my husband and my intentions are to advocate for those who post here. Since you do not see that my efforts are intended to be helpful I will stop that form of communication with you.

I have deleted the post that listed resources.


Iris L.
Posted: Sunday, July 18, 2021 2:25 AM
Joined: 12/15/2011
Posts: 17430


Alz+, I am so upset by the extent of your turmoil!  I understand your distress and I know why you have your distress.  I believe what you say about the woman in the bed next to you at the unit.  I have always been impressed by your insights.  But I am wondering, are you thinking that jfkoc was the anonymous reporter?   No, I am sure she was not!  I told you before the social workers had come out that the NP or someone at her office would most likely make a report.  I could say that because that has been my experience as a medical professional.  I have instituted reports of my own.  I have said before, there are steps to follow for professionals, and they are going to follow them.  

 I

People like us are vulnerable.  I have posted this many times.  You might recall that I had left the board twice because I didn't like what was being posted.  Not only about me, but about my fellow patients who were worse off than me.  I didn't like reading that they are "brain-dead" or needed to be treated "like trained monkeys."  But I came back because I needed the support, I needed information that I cannot get elsewhere, and I wanted to be a support myself to others whom I could help.  


I have come to know that the outside world, including most professionals, are clueless as to how to help and support a person with dementia.  They just don't know.  People on this board are not perfect, including me.  But one thing I do know for sure, the people who post on this board and who respond to you, do care about you!  You are not going to find other people anywhere else more caring or interested or knowledgeable.  



There is a huge learning curve for even the most dedicated family caregiver.  They don't get told anything constructive by the professionals.  That's why they come to these message boards, to learn what to do and to get some decent, level-headed advice.


This is my opinion based on my own experience. 


Alz+, you have been through a lot.  Are you recharging yourself?  I hope so.  Please, take a break, and come back when you feel ready.  


                 (((((( Alz+ ))))))


Iris


 


 


eaglemom
Posted: Sunday, July 18, 2021 9:30 AM
Joined: 3/7/2012
Posts: 2701


Iris thank you for the wonderfully written posting. I'm hoping alz+ will be able to take some deep cleansings breaths and absorb what you've written.

We are here to help one another. Rest assured that as a PV I have NO information on you or anyone. I only know what you've posted. 

I certainly hope alz+ will continue on the message board. 

eagle