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I'm new here. Did anyone here ever have a parent say to you “what is wrong with YOU”? I get this “are you okay?” because I will (and I do this without thinking, I admit) say “well, you said such and such”. This could be in reference to something from months or years ago. i dont do it deliberately. To which she will say “I never said that”. What is wrong with you?” So my response is something like “oh I must have made a mistake”. But it does not end there. She seems so angry so much and says that I am angry at her or that I make her angry. I am there with my mouth half open trying to figure out how the conversation got so out of hand that I am the bad guy. I don’t know how to stop things from going viral. Then she will say she never wants to talk to me again.
The most recent thing was this: She accused me of wanting her money. What? She doesn’t have much and doesn’t own her own home, so I don’t get it. The other day this all came about because she has a carer who she said she is giving things to. I thought about the jewelry she owns and keeps in her closet so I asked her if she is giving this jewelry to the carer and she started screaming at me that I want her money and her jewelry and it was awful. Then she said "give me your money so I can go to Assisted Living. I cant do this because she would lose her Medicaid if she got aid. Not only don’t I want anything from her, but I am partially supporting her for years. She doesn't have much and none of this makes sense to me. I felt guilty for not saying, yes, you can have my money. Trying to explain to her that she cannot go into Assisted Living never works because she doesn't understand why. She hates where she lives (too long a story to go into but it is legitimate complaints). She cant reason it through and thinks I am against her.
I know it’s the disease, but she can act so nice in front of other people. My brother is an example. If she is with him and she “starts”, he rudely shuts her up with “don’t talk negative”. And she listens. I cant be that heartless.
She was never this way all her life and now she is someone I don’t like much and cant deal with, but I love her. Please help me to know how to handle this. Feel bad to have to come to a site and write this.
Thank you.

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Anne; so sorry that you are experiencing this and that your brother is not on board. Something to be considered is getting mom to a geriatric psychiatrist. Over the past several years, mom has seen a couple. Once during a hospitalization, on an ongoing basis while in independent living and now while that she's in a NH.

to me, the psychiatrist is the last MD who "gets" the whole patient. S/he's the person who is not just looking at the heart or the legs or the spine: they are looking at the brain, the mind the body and the personality. And there are meds that can ameliorate some of the symptoms that you are describing.

My mom was in the hospital a couple of years ago. She'd had a couple of episodes of really high blood pressure, but no stroke diagnosed. Some of her symptoms were suggestive of a seizure disorder, so neurology ordered a three day EEG. They put you in a private room, lovely view, rig you up with all the electrodes on your head and attach you so that the team in the EEG lab down the hall can read the waves. The other patients having this done were sitting contentedly reading, knitting, watching TV.

A couple of hours into the test, I got a call from the hospital, saying that my mother was trying to leave the room and the hospital, saying that she was being held against her will. I asked them to put her one the phone.

"hi mom".

(in a whisper) "It's all a scam"

what?

"It's a scam; they say I'm in a hospital, but it's not. I can tell. It's a parking garage"

(what!!1??)

Then she says "How do I know it's you I'm talking to?"

OMG, where is my mother?

I got in my car and drove from Brooklyn to the hospital in Westchester in record time. To make a really long story short, my mother was re-living an episode of "Monk" in which he's held incommunicado in a parking garage.

We got geriatric psychiatry involved. Nice doc came and talked to mom. Talked about Hospital delirium/psychosis. Talked about her need for support and socialization. Need for a facility that would provide distraction, reassurance and good nutrition. Talked to us for at least an hour. Best advice we ever, ever got.
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Anne, my 93 yr. old mom went through the same thing last year. After the mild confusion and forgetfulness, she became aggressive, verbally and physically abusive, accusing me of stealing everything, plotting against her, etc. (She already had a diagnosis of Alzheimer's from her MD and a neurologist). I thought this "phase" would never end!!!! I argued with her at length, both trying to set her straight (impossible) and trying to clear my good name of any wrongdoing in her eyes. Now, 7 months later and a move to a memory facility, she's calmed down but has become more depressed.

My opinion is that my mom KNOWS she is "loosing it". They are angry at THEMSELVES and/or their situation for their shortcomings. They take that anger out on us. They have been in charge of their lives for many years and they're not about to relinquish control to anyone. Denial is in full swing at this stage. I backed off for awhile (for my own sanity) until her behavior became too irrational and confused. I had to trick her into the memory care facility, her worst fear.
She has progressed into Stage 6 and now doesn't know who I am about half the time. But she knows that "something is wrong with my brain". "I can't remember anything. I'm so mixed up . Who are you again?" And she's very upset about it. I thought everyone with dementia was in La-La Land, in a peaceful, confused oblivion. Apparently, not so. What a living hell to KNOW you aren't "right", can't think straight or function normally, can't seem to get it together, forget what was just asked and answered (after asking 10+ times), aimlessly arranging, then rearranging things and not know why, forgetting to bathe, have huge chunks of time "disappear", remembering a name but having no idea who it belonged to, having to rely on the word of others because you have no clue of what went on, etc. She is watching her own decline. She asks if there is medication for this. I tell her she's taking it but I don't mention that it no longer does any good. That's heartbreaking.

She now is saying she wants to die. I tell her God will take her when He's ready. For her own sanity, I hope that she progresses to "La-La Land" or that the Lord is merciful and takes her home. This is just agonizing for everyone.

Anne, inform yourself about dementia. Alzheimer's. Org might be a good start. Remember to take care of yourself and don't go through anything you can't tolerate mentally. We're all suffering with you. ((Hugs))
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Thank you all, again. Yes, family is dysfunction. My mother was not narcissitic, but really very loving.
And yes, the doctor was referring to delirum/delusion? she has when hospitalized when she mentioned the dementia. In as much as my brother is not forthcoming, that is all the information I can get at this point. You are all so kind to take the time to give me links, information, look up things ... wow. What affirmation. I just wish none of this were true :(.
So glad I found this site. So many good people who understand. You are right, people who have not experienced this just don't "get it".
thanks again. I will probably be back.
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I have experienced sundowning symptoms when I had some TIA's.
(Transient ischemic attack, or mini-stroke).
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Jessebelle, I did a cursory search re: sundowners syndrome is dementia?
Any cognitive decline (memory, confusion) should be diagnosed it says.
There are some "dementia" that can improve? It says.
Terms used were used as same: Sundowners, dementia, alzheimers.
Do not have the actual reference.
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Anne - as the others have said, this site can be a sanity saver. Personally, it's done wonders for me and the education from "front line" soldiers has been invaluable! On a lighter note - there is a long standing thread with hundreds of posts - I can't recall the exact title but its something like "What's the funniest thing your parents has said lately". Do a search here for it. I'm off to lunch but if I don't see it up when I get home, I'll search for it and get it current. It's laugh out loud funny, wise and touching. I highly recommend it for lightening the moment, letting you know you are not alone and putting things into perspective. Welcome.
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Keep coming back to this forum, and keep sharing. So many wise and kind and perceptive (and witty!) people here. People who "get it." And in return, they give a consistent level of understanding.

A refreshing contrast from the static and frustration you get in the so-called real world.

These threads are sanity-savers. The kindred spirits of AC Forum will make you feel validated. Which is crucial for mental health!

You will also learn practical and tactical ways to get through the moment – and the future. Welcome aboard.
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I checked and the only other instance I found of sundowning was in hospital delirium. Generally it is thought of as a symptom of some type of dementia. So if the doctor mentions sundowning, he is saying she has a symptom of dementia without using the D word. Since your mother has heart failure, he may not want to add the additional label onto it. With heart problems, medications used for dementia wouldn't be helpful. So it is probably fine to let the diagnosis slide. I just wish your brother was more on board with it. It sounds like he is tired, too. It has been a long road for the three of you.
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Anne, There is no shame asking for help, no need to be embarrassed.
People here, including me, may not have it right, but the dynamics sound very familiar.
Keep talking.
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Anne, if the doctors mention sundowning, they are really saying dementia. The two go together. I don't know if you could have sundowning without dementia... except maybe with a UTI. Does anyone know if there are cases where people without dementia have sundowning?
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Anne, Just to address your first paragraph.

You are a truth seeker, and need to get clarification because some things don't fit reality. However, that is not possible-to get the truth from people who use this type of communication-by attacking you, by causing you doubt about what was said. ie: "Are you okay" , "What is wrong with you?". I believe this is called "Distraction", and "Misdirection". This tact is being used by Mom and brother (s).

Learn more. Stop asking for the truth, because you will get hurt.
Make visits short, pleasant, and remove yourself from any responsibility.
This is called: "Detach with love".

You are correct, it is highly inappropriate for your Mom to be giving away her jewelry to the caregiver, and worse that the caregiver receives it. Report this to POA and leave it.

I am thinking if you visited once a month for an hour, that may be too much for you.

You have said that you do this without thinking- (asking questions that provoke your Mom). That solution may require therapy for you. In therapy, you may learn self protection and that it is not all you. You have also said your family is dysfunctional. There is some doubt that not just your Mom, but your entire family
has always been this way. Maybe you cannot see that your own Mother may have been narcissistic, and now she is old and sick too.

Study up! Detach with love. Google it : Detach with love.
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Just a note here...if the doctor says she sundowns....sundowners syndrome is part of dementia. This is the diagnosis. Dementia with sundowners. Sundowners can't happen in a vacuum. If the doctor says she has sundowners but not dementia, then you need to replace him as he obviously doesn't have the slightest understanding of dementia. Is he a geriatric psychiatrist or at least a geriatric physician? She needs to see a geriatric doctor asap.

Angel
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She is living alone in her own apartment. She now has a carer 5 days a week. I do the cleaning, cooking, and shopping. The carer is basically there to see to it that she takes her meds, etc. Not much more than say, preparing an egg or something. But it is good that she finally accepted anyone. She refused for years, and threw many people out. She wants no one in. But we all go in. Myself, husband, brothers ... and still she says "that we are all useless". She is depressed. I know this. After she yells and screams at me she ends up crying. I don't know what to do anymore.
thank you all so much for your posts.

JessieBelle: Thank you for validating me re others being in denial and the doctors not diagnosing it officially though they say she "sundowns", etc. You said you got it on the death certficiate. Then I was right when I assumed that unless and until things were to get really bad, they would not seek a diagnosis.
GA: Wise advice. I have copied and will keep. If I missed anyone, please know that you are all helping and I need the support at this point in time. I have watched Teepa Snow and it all makes sense, but when you are in the situation, it is YOUR parent, and it is hard to do. Perhaps an outside caregiver can do it better than me or some of you can. My emotionsl are too invested, I think. Knowing you are losing a loving parent (no matter what your age) is not easy. I hate that she has had to suffer for so many years. In the early years I was more able to handle the hospitalizations (very frequent), surgeries, nursing home rehabs. She has really been to hell and back.
Everyone: so many hugs or gratitude.
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I'm confused. With whom is your mother living?
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Ditto on GardenArtist. This is what it is like when your parent has dementia. They are not the same person. No sense arguing or trying to reason with them. I quickly learned with my mother that any disagreement turned into a "who's on first" routine. (If you have ever seen that Abbott and Costello skit, you know what I mean)
One thing I will add: dementia mothers take it out on loved ones (especially their daughters) and sometimes behave much better to others and strangers (thus, they can fool doctors for years). As it gets worse, they obsess about money and also get paranoid and blame people for stealing.
(((hugs))) If, as you say, she doesn't have much time, it might be over soon. It is sad when your mom becomes a stranger, and worse when family gets involved and doesn't agree.
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You are not going to believe this,but she remains undiagnosed! I don't take her to doctor. My brother controls all of that and has POA and my mother will only go with him. He hardly ever takes her now. He is burnt out. Entire family fell apart (dysfunctional). I tried telling my brother what I see, but he is in denial even though he has seen her have delusions (twice) and her doctor (clinic/meaning little time) says she "Sundowns". I suspect, they don't expect her to live much longer as she is end stage heart failure, almost 90, and perhaps they don't want to add another diagnosis. Brother and I are now stranged and he does not answer my emails or give me any medical information. Same goes for hospital. They will tell me nothing all the times she has been hospitalized. I have another brother who just "ran" because he cant handle it all. Sorry for the long missive. Point: I am really alone in all of this. The only test they give her is: what s your name, where do you live and what season is it. And, I guess she passes. When brother and I were talking and I was telling him what I saw, he became angry so I stopped. He is a control freak. I just wanted to know if others have these issues and how they deal and if you ever remember the parent that once was .. the one that was good and that I love so dearly.
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Anne, the caregiver and close family are always the first to know if there is dementia. We don't need the doctors to verify it in our own minds. My brothers didn't really pay much attention to me saying the parents had dementia. It took the doctors writing it on my father's death certificate for it to sink in to them that I wasn't kidding. And they didn't believe it about my mother until she started to tell them her story about a squirrel over and over. I was there all the time, so I knew the truth. I don't know why the doctors are so reluctant to diagnose dementia. I think maybe they don't want to hurt the patient's feelings or make them feel bad??

Vascular disease and dementia often go together. If the brain is not getting enough oxygen, even for short periods of time, there can be damage. I'm never surprised when I hear of dementia in someone with heart disease, COPD, or chronic hypertension. It may help to read about vascular dementia (VaD). Alz.org has a bit on it, but it is better to google articles that talk about it alone. I don't know if it could be what your mother has, but I do know that many people with VaD have anger issues.
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Anne, this is going to be a frank answer, but written with a compassion that probably won't show through the frankness of my response.

1. Your mother has dementia according to your profile; nerve connections are damaged and will never be restored. Her method of thinking has changed and can't be corrected b/c of the nerve damage from dementia.

2. She doesn't understand what she's doing or saying. You're dealing with a person who's different from the one who didn't have dementia. Her ability to be rational has been lost, permanently.

3. The interaction between the two of you will change. Your mother has lost her perspective. Conversations will be difficult.

4. Your mother can't compensate. In order to avoid the strife and friction, you're the only one who can adjust. That requires a recognition that she's not responding in a rational way, and even though she may periodically, it won't be on a consistent basis.

5. That's a difficult situation to accept. If you read some other posts on coping with dementia, caregivers adjusting their attitudes, and letting the insults pass w/o escalation, you'll see how others have handled similar situations.

6. Try to avoid getting in a one on one argument, back and forth, argument vs. argument. If changing the subject doesn't help, leave the room, do something else, and remember that your mother doesn't understand what she's saying.

7. You'll have to find some form of outlet as a release, whether it's walking, exercising, crafts work, listening to music - you'll need some kind of therapeutic activity to allow you to accept the situation but find peace within yourself regardless.

8. You'll have to learn to ignore the pain and insults, b/c your mother doesn't understand what she's doing.

9. Your brother takes a more aggressive approach; you're not that kind of person. She probably sense she can provoke you but not your brother. You could try to be like your brother but I sense it's not in your nature. So then focus on turning away, walking out, leaving her to rant only with herself.

10. Obviously this isn't easy and won't happen quickly. JessieBelle has dealt with this for a long time with her own mother.

Sometimes I think one of the easiest ways out of the conflicts and arguments is the old shrug of the shoulders and the "whatever!" response.

As RM suggests, you need to disconnect, because you're still tied to her in such a way that you're the one who's going to be hurt.
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Anne - you posted while I was posting, I see that your mom is on some "mood meds". So was mine at the time the worst of the worst was going on. Thing is - seems they weren't the right meds and there were better/different ones out there. It took the geriatric psychitrist to really get it right. So my advice stands - get mom into someone who specializes in the field of dementia and elder rage.
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Anne - you sound to be mentally near where I was when I found this site this past October. Actually, I think I was worse - near mental collapse after five years of looking after my mother, not really knowing anything about dementia and her getting meaner and more self-absorbed by the day. The hours and hours I spent trying to reason with her - not understanding that reason was beyond her mental capability. Then in August catastrophe of moms own making hit and she fell. In about three months mom when from Independent Living (part-time paid caregiver) to hospital, rehab, assisted living and finally a nursing home. All the while mom taking out her fear, frustration, poor health and dementia out on me / while do nothing brother and almost do nothing brother were getting a pass. Mom was never June Cleaver but her hatefulness towards me had become epic. However, only twice has my mom accused me of anything criminal (?) - once she said I had stolen her pain meds (AL had them) and on the day brothers and I were moving her into the nursing home she said I was doing it to get her money - never mind the fact it was twice as expensive as the AL - my brothers were only participating because I was paying them, she said. Anyhow - long story short, I got mom into see a geriatric psychitrist. He did a medication over-haul and prescribed what I call "mood meds". It took about a month for them to kick in as some meds were stopped and started at a gradual rate. Now mom is 100x easier to deal with. Mom is also on hospice but it is a "slow, steady decline", they say. But the problem that remains is my inability to let go of my anger - for things in the distant past and things said in October. Even though I now know it was mainly "the disease" saying all the hateful things and doing all the hateful things over the past five years - what she said in October was so awful, so hurtful that I am having trouble feeling anything but the disconnect I now feel. I still visit 2-3x a week, manage her affairs, shop for her supplies etc. but it's like I'm doing it for a stranger. Sooo - before it goes too far and you wind up bitter like me - get your mom into see a geriatric psychitrist, if possible- if not, a doctor and see what can be done to help from a medication stand point. Next, learn not to try to reason with or to correct her misconcepted thoughts. Take a step back and disconnect. Good luck - and I know how you feel.
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thanks for answering Jesse. What I am worried about it her saying things about me to my siblings and such. Many are in denial about the dementia and for some crazy reason the doctor says she has delirium and that she Sundowns, but when my brother asked if she has dementia, the doctor said no. I think they just don't want to add this diagnosis because she is sick with heart disease, very sick, and very old, and maybe they want to spare us all as nothing could be done anyway. she is on antidepressant and anti-anxiety medication. I hate this disease.
I can only hope that I will some day remember my mother before this all happened. I so want to remember that lovely, loving, compassionate person who once loved me so much. I am grieiving. She is here, but she is not here.
I hope more people will share because I really need the support. Ten years illness here. She is almost 90 and suffering in many ways. too much has happened. I will spare the details of the illnesses. Thank you.
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Oh, Anne22. All I could do is nod when I was reading what you wrote. A lot of seniors develop this ball of anger in them that they throw freely at the caregiver. They usually don't show it to anyone else. It is really awful and isn't the caregiver's fault. The caregiver will be darned if they do and darned if they don't. There is no correcting it or reasoning with it, so we just have to get away from it when it becomes too harmful. I can't explain elder rage. I think there is a huge neurological component to it for people who have dementia. The mystery is why only one person is targeted. I'm glad for our sake that it is not a constant thing. I can't imagine living with such anger 24/7. It's hard enough to put up with for a day or two.
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