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Hi all, I have read many posts and find comfort in them. I haven’t posted myself in quite some time. My mom has not been formally diagnosed, but we have noticed some cognitive decline. A little short term memory issues. Some trouble in making large meals with all the steps involved. But for the most part she is still able to take care of her daily needs. She is 73 years old and I should mention she had a car accident with a brain injury 16 years ago. I a previous post I mentioned The behaviours that were causing us the most concern were the paranoia/delusions/hallucinations. We have moved her 2 times in the last year. In the first condo there was a lot of noise coming from upstairs as there were two young children living there (a girl 4yrs and a boy 2yrs). However, my mom had it in her head that there was a 10 year old boy living there that they were hiding. She would become very agitated. She would retaliate by playing loud music and would confront the people. A few times the police were called as they felt threatened. She insisted on moving so my brother and I helped her find a new place. We knew that this wasn’t the right thing to do, but she is still in control of her own affairs as she functions fairly well with daily life. In the current condo she is convinced that people are smoking around her. She will bother the security people to come up to her condo to smell the smoke. She will knock on neighbours doors accusing them of smoking. There is no smoke. The police have been called on this instance too as she will again retaliate with loud music or put her tv on very loud. Fast forward a few months and I have been diagnosed with breast cancer. I have had surgery and I’m currently going through treatment. My mom has been living with me during this time. The above behaviours have since gone away. I was once told that being isolated can be the sole trigger for these types of behaviours. Does anyone have any insight into this? Is it common for these delusions/paranoia/hallucinations to subside? Is it that my mom is surrounded by my family and distracted. Maybe has a purpose as she’s helping me while I go through treatment? Is it just a matter of time before the behaviours occur again? I feel like I’m waiting for the next thing to happen. We live in Canada and we are trying to get her to see a geriatrician, but she doesn’t think there is anything wrong. I should add that her family dr (you would call a primary care physician, I believe) has tried to get her on an anti-psychotic several times, but she refuses. Anyway, I feel like we’re at a standstill right now. Just waiting for what’s going to happen next. Any insight would be much appreciated.

I get nettled when I hear that phrase "she won't hear of it".

Sometimes, "stepping up", "stepping in", "moving mom in temporarily" amount to enabling a dysfunctional situation to continue.

Olfactory hallucinations are almost always an indication of tumor (that is psych grad school 101).

Something needs to change. Given your own current medical needs, I can understand why you are hesitant to shake things up.

But this situation cannot connot continue without mom getting better dx and treatment.
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lealonnie1 Oct 17, 2021
Me too Barb. She 'won't hear of it' in terms of taking meds, and the OP 'won't hear of it' in terms of keeping mom living in her home. Something's gotta give!
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The problem is showtiming; your mother goes to her appointments 'alone', puts on a big act, convinces the doctor she's fine and all is well, and boom, out the door she waltzes while in reality, she's falling apart. And you are saying she's 'highly functional' while also saying she's fighting with the neighbors about supposed 'smoke' issues she smells when nobody is smoking and she had to move away b/c of these neighbors hiding a 10 year old boy! She's not highly functional, that's the God's honest truth. Something is seriously wrong here and you're not hearing the whole story; only what SHE wants to tell you! If she's shaking with tremors & having swallowing issues, Parkinson's should be eliminated and the neurologist can do that, but who knows WHAT the doctor has told her that you're not hearing. My own mother showtimes up SUCH a storm that it's unbelievable; she has people not believing she even has advanced dementia, and wondering why she lives in Memory Care Assisted Living! Meanwhile, she calls me asking where 'mama' is (who died 37 years ago) and says she's getting dressed to ride the 'train to go see her'. We live in Colo and the 'train' she's riding is in NYC.

If she wants to continue living with you, you have to lay down some rules right away. Number 1 is with POA, you get to accompany her to all doctor appointments and sit in on them with her. If/when the doctor recommends medications to address the delusions/paranoia/hallucinations/depression, then she must agree to take said medications or else you can no longer keep her residing in your home. She has to make compromises and stop being so 'against' medical advice o/w you have to find other living accommodations for her ie: managed care. You have to get to the bottom of the diagnosis here and unless she allows you to accompany her to the doctor, that's not going to happen.

Wishing you the best of luck putting your foot down & helping your mother get a proper diagnosis for what's going on here! The chaos has got to stop and with your help setting down some rules, it likely will!!
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Nancypr Oct 18, 2021
Thanks for your response. I do know about ‘show timing’. We are not in denial about the situation. We are trying to get our mother help. And yes, She is still highly functioning. Living in my home caring for herself, cooking for my family, grocery shopping, taking care of me because of my cancer treatment. As for the delusions/hallucinations…these are real to dementia patients. I have been told not to challenge these delusions (by an Alzheimer’s behaviour support worker) as we have in the past and it has not faired well. At some point we will have to ‘put our foot down’ as you have said, but unfortunately now is not the time, because of my own medical condition. My mother is not incapacitated at this time. The social worker that has accompanied the police on 2 occasions when my mom was at her condo and making noise to retaliate against the smoking etc. said to me the mental health act states that every person has rights, They cannot take her unwillingly if she is not a danger to herself or others. To which she is not at this time.This may or may not change. I can imagine that she must know there are changes happening and this must scare her too. I feel that it’s a fine line we are walking in trying to get her the help she needs and letting her feel
like she does have some control. It’s not an easy road and everyone is different. Thanks for your advice.
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I recommend seeing a doctor about her smelling smoke if it continues. A relative of mine smelled cigarette smoke for months when no one was smoking. His doc ran tests and found a small tumor in his brain. The tumor location is known to cause olfactory issues.
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Nancypr Oct 17, 2021
Thanks for your response. She has had an MRI to rule out any tumours or strokes.
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Caroli, you make a good point about the use of atypical antipsychotics for symptoms that are NOT related to schizophrenia.

A good fried is on Seroquel for depression. My husband takes it for sleep (he and his doctor tried everything else). It works.

Nancy, would your mom be amenable to speaking to her doctor about the use of this class of drugs for non-schizophrenia related issues? Or is her cognitive decline such that she is unable to appreciate the nuances?
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Nancypr Oct 17, 2021
Thank you for your response! I was on seroquel for my depression years ago. I even told her this, but she won’t hear of it. Partly because she is on many medication for a heart condition already, partly because she has had Unusual side effects with meds in the past and also because she has a brother who is schizophrenic. It is such a difficult situation.
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There are other psychiatric uses for risperidone in addition to treating schizophrenia. You can easily look them up. I was prescribed risperidone for a moderately long period of time because I was suffering from depression. I don't know if your mother would be amenable to having a risperidone prescription if she knew it was NOT for schizophrenia, which I'm assuming is the case. You could ask the doctor to explain this to her. Especially in older generations, schizophrenia probably has had more stigma attached to it than any other mental health disorder.
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Nancypr Oct 17, 2021
Hi there! Thanks for your response. I have had a conversation with her about this. Explaining that some meds are used ‘off label’ for other things. The problem is that she has had many reactions to different medications over the years and that’s part of her hesitation. Also, she has a brother who is schizophrenic, so this doesn’t help!
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Nancy, here's the thing. As an adult who hasn't been declared incompetent, your mom has the right to refuse treatment (I know you know this).

But in refusing help NOW, in order to stave off progression or something truly awful (like her hurting herself or someone else while hallucinating), she is acting against her own best interests and needs to understand that her non-compliance comes at a cost.

That cost is your involvement.

I was very upfront with my mom that she couldn't make demands on our time and resources without flexibility on her part--which included moving to a facility where there were eyes on her situation 24/7 and help at her door if she needed it.

We simply refused to be on call 24/7.
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Nancypr Oct 15, 2021
i completely agree with you! We are trying to get her help now to prevent anything awful from happening or to slow down progression.
Like you, we will have to, at some point, put our foot down, so to speak. At this time due to my own medical issues (currently in treatment for breast cancer) she is happy to be staying with us and her behaviour is stable for the most part.
thanks for your response
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Even if mom won't allow you to attend her appointments and although the doctor won't be able to communicate with you directly unless your mother's permision is sought and given, there is nothing that prevents you and/or your brother from emailing/faxing this doctor a belleted list of your concerns and observations and expressing your concern that perhaps the full picture of symptoms is not being reported by mom.

It's worth a shot and places the ball in the doctor's court.

Best of luck with your treatment going forward!
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Nancypr Oct 15, 2021
Hi Thanks for your response. We have written a detailed 3 page letter and given to her family dr as well as the geriatrician she is now seeing. They have recommended meds (risperidone) but she has refused on numerous occasions. It is so difficult as she is still able to look after herself with personal care and eating etc.. I feel like she is highly functioning in this capacity so it’s deceiving what is really going on. Perhaps these changes will come sooner rather than later. I feel like I’m waiting for the progression cause then maybe she’ll get the help she needs, but at the same time I don’t want the progression. It feels like a no win situation.
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I should get a neurologist to have another look. There could have been further developments rooted in the brain injury, certainly worth ruling out before anyone sticks a plain dementia label on her. The point to explain to her is that her senses, including hearing and smell, are governed by the brain; and if she is hearing or smelling things that no one else can perceive it wants checking out.

I'm sure it is also true that if you are living alone with nothing else to occupy you then yes you are going to get worked up about details you otherwise wouldn't even notice.

PS Best of luck with your treatment, wish you every success with it.
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Nancypr Oct 15, 2021
Thanks for your response. She sees a neurologist for other symptoms. No one seems to be able to put everything together. Also, I’m not sure how much my mom tells them. She is still very capable of going to these appts on her own and refuses myself and/or my brother me present. It’s such a difficult thing to watch and I feel so helpless.
thank you for your well wishes
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Has your Mom been tested for a UTI? (urinary tract infection). My Mom has had several similar incidents and each time are traced to UTI. The erratic, delusional and completely out of character behaviors are very alarming, so I can relate to your situation. Also being dehydrated can contribute to this kind of thing. Might be worth talking to her doctor about it. Wishing you the best!
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Nancypr Oct 15, 2021
Hi! Thanks for much for your reply! She has been tested for UTI. The behaviours are very alarming and hard to watch. We’ve learned it’s best not to engage, but that is difficult too. It’s such a rollercoaster
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Nancypr: Imho, she needs to be seen by a geriatric neurologist.
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Nancypr Oct 15, 2021
Hi! Thanks for your message. She does see a neurologist. Problem is she’s very capable still of going to these appts on her own and she refuses that myself and/or brother be present!
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Take her to a good neurologist, for an evaluation it seems a begining of Lowe Body dementia. Which my husband has the delusion and hallucination comes and goes and when the days get shorter it start even if earlier in the afternoon. Is not constant. Most of the time is auditory hallucination and sometime s visual. Best of luck.
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Nancypr Oct 15, 2021
Hi! Thanks for your response.I have been thinking frontotemperol lobe to this point, somewhat because of the brain injury she had to the frontal love. But you mentioning Lewy body has me thinking cause she sees a neurologist for tremors and swallowing issues too. It’s all so complex. Thanks again
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Thinking of my own mother, I think perhaps isolation can trigger these delusions. Last year she had 3 falls with breaks and required 3 stays in rehab/nursing home. During her first and second stay, they were on complete lockdown - no visitors. During those 2 times, she swore that people were smoking pot every night and it was coming through the ventilation. The first time, I thought it might be happening because nobody was allowed in and maybe once they put the residents in their beds, it was party time. There was nobody allowed in, so who knows what was going on. However, the second time she was in a completely different facility and started claiming the same thing. Then the last time (3rd), lockdown had eased and she said the same thing, though not as frequently. However, she once claimed it was happening while we were there visiting her and there was no pot smoke anywhere, but she swore there was. I tried explaining that the place is full of visiting families and nothing was going on. She also claimed that they were drinking on the job and having parties in the basement at night (how she would know this being bedridden is beyond me).

Once she got home, it stopped. Though, when she first got home, she did accuse me of smoking a 'funny cigarette' in my bedroom once when it was just a regular cigarette. So, the only thing I can think of is that the isolation caused it because they didn't give her any different meds while she was there.
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Nancypr Oct 15, 2021
It is interesting the isolation component. Here in Canada we have counsellors through the Alzheimer’s society and my counsellor has stated that isolation can be the only trigger. My mom definitely does better with people around.
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Please get her chevked gor a uti (urinary tract infection) mo one tells you that hallinications/delusions/paranoia can begin bevause of this. I didnt know it and had to find out the hard way. It is mostly a hygienic problem. So its a constant battle.
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Nancypr Oct 15, 2021
Hi! Thanks for your message. She has been tested for a UTI. I sometimes wish that’s what we are dealing with. At least she would take the antibiotics
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Hallucinations can have a couple of causes: infections are a huge cause, imbalances in electrolytes, poor oxygenation, brain injuries.. Usually with a brain injury you would see the same type of hallucinations or delusions that don't come and go. Having your mom be with others may help by distracting her attention from nonexistent things she perceives - kind of like the brain is misinterpreting input. Since your mom had a brain injury, I would talk with her family doctor about a referral to a neurologist. The neurologist can better evaluate and treat the cause of your mom's behavior - if it is linked to her brain injury. If her brain injury is not the cause, then I would ask her family doctor for a referral to a geriatric psychiatrist. The psychiatrist is better qualified to evaluate and treat mental health issues. Just be aware that medications for mental health can take awhile to become effective and there may be a lengthy time of adjusting medications to find the right dose and/or combination of drugs.
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Nancypr Oct 15, 2021
Hi! Thanks so much for your response. My mom does see a neurologist. She has also seen a geriatric psychiatrist and she walked out of the appointment. She is very head strong and stubborn and does not see that there is a problem. They have tried to get her to take risperidone and she has refused. She has looked it up and sees that it is for schizophrenia and that just makes her upset. It’s definitely a challenging and long road!
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I'm not familiar with Canadian law, but in the States what I'd suggest:
1. Does anyone have medical POA that doesn't require her to be incapacitated? If so, just take her to doctor for evaluation without advance notice. If not, unless someone is a danger to themselves or others, they can legally make bad decisions.
2. Does the doctor think, and is prepared to act, that she is not legally competent? Then someone else will make decisions for her, even if she doesn't like it. I think this takes quite awhile.
3. Changes in surroundings does trigger changes in thinking, so it's possible that's what happened with the moves. However, now you have documentation (via police reports) in addition to your observations to take to a doctor. You can provide her usual doctor a copy. Hopefully this is someone who can advise you.
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Nancypr Oct 15, 2021
Hi! Thank you so much for your response. She does have a POA (for myself and brother) but the drs are not prepared to say she is legally incompetent, cause really she’s not at this point. And like you said even though the police have been involved, she hasn’t been a danger to herself or others, so there is no risk. Therefore they can’t even take her to the hospital for a psych evaluation. We have written a 3 page letter to her Drs. They have tried to suggest meds (risperidone) but she refuses. It’s such a difficult situation. Hard to watch and know how to help when she doesn’t feel she needs the help
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Has she been checked for a UTI?

Dealing with mom and your treatments is going to be difficult if not impossible. I recently went through the BC myself. My mom passed, and I was very lucky my BC was very early and had not metastasized. No treatment after mastectomy was needed. And I decided to remain flat because of potential for numerous surgeries with reconstruction. Just was not going to go there. Just the stress alone, dealing with mom too, I cannot imagine.
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Nancypr Oct 9, 2021
Thanks for your reply. She has been checked for UTI.
it’s definitely been difficult to say the least! Trying to take things one day at a time.
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