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New here. 58/59 year old brother in law with severe memory problems. Wife not being listened to.

Markova21

Registered User
Jun 5, 2020
16
Hello. My sister is at her wits end. Her 58 or 59 year old husband has been living in a care home in Manchester since 12 Feb this year. He is deteriorating all the time. Problems for about 18 months now. Has had MRI and CT scans of the brain which may be global atrophy. Despite these scans they have done no investigation into why he has developed these problems. He can barely string a sentence together. He soils himself and doesn't realise. He hallucinates, believing people are going to kill him in the home. He wanders around the building incessantly. If he goes to speak to someone who has phoned him a carer has to stand next to him at all times because he doesn't understand what to do with the receiver. When someone tells him to put the piece to his mouth and speak into it, 20 seconds later he forgets how to use it and has to be told all over again. He has a psychiatrist, social worker, etc. The flat where my sister and her husband are living had a bad damp patch in the loft which had gone mouldy. It still hasn't been cleared away/sorted. My sister watched a documentary on TV which featured a US family with damp and mould in their home, which seriously affected the memory and brain capacity of the man living there. They hired experts who came in and took away samples of the mould. It was found to be a very rare mould called Stachybotris. It is also known as a Neuro Toxin. The toxic spores caused the man's memory problems and they were severe. ( If you want to watch the documentary you can see it on Youtube. It is called "Forensic Files. Season 7. Episode 37. Breaking the mold". My sister thinks there is a possibility the mould in their loft could be something similar to this and could be the cause of her husband's dementia. They haven't even formally told his wife what they think the actual problem is. At first they said it was Vascular Dementia. Then they were not sure. He has had no further investigations since the two scans months ago. He has deteriorated a lot since then. The care home want to move him to a different home due to his deterioration. I was telling this online to a Neurologist and described my brother in laws symptoms. He said it sounded it would fall under a Chronic Inflammatory Response Syndrome or CIRS. Should she write to the health authorities caring for her husband and give them this information? She has told every health professional about Stachybotris and has asked them to investigate if this could be the cause of his dementia. They all just dismiss her theory out of hand and treat her a bit like an idiot, for thinking her husband might be suffering from the same thing she saw on a tv programme. I am writing letters on my sister's behalf, as she doesn't have a computer and her handwriting is atrocious. Any advice at all about what I have said would be welcome. Many thanks. EDIT. My sister said that if after investigating if there is anything toxic in his brain due to the mould it transpires there isn't anything there and it is simply that her husband sadly has Early Onset Dementia then she will accept it and shut the hell up. ( Her words). However she said as long as the authorities are not taking what she says seriously and are not going to examine her husband thoroughly, then she will keep on about it to anyone and everyone who will listen.
 
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canary

Registered User
Feb 25, 2014
12,653
South coast
Hello @Markova21 and welcome to DTP

All the things that you describe about your brother are typical symptoms of advanced dementia and the MRI would back this up. What makes you think it is something else? The symptoms of Stachybotris are mostly respiratory - wheezing, coughing etc also skin rashes. You havent mentioned anything like that.

You have to be very careful when searching on the internet. There is all sorts of disinformation out there and anyone can claim to be a neurologist on-line.
 

Markova21

Registered User
Jun 5, 2020
16
Hello. Thank you so much for your reply. It is my sister who thinks it is being caused by Stachybotris, not me. Not everyone presents with skin problems, wheezing etc. Some just have memory /cognitive problems, which is what my brother in law has. The man online was a doctor in Kent. He is certainly a doctor, if not a Neurologist. But he was claiming to be a Neurologist. My sister just wants someone to listen to her concerns, investigate and rule the possibility in or out. No-one is doing this, and she wants me to write to people on her behalf suggesting they at least look into the possibility this mould might be one of the causes, or the cause of it all. But she's just an ordinary person, as am I. How does she go about being listened to? The online doctor suggested they go private and hire a private Neurologist to investigate this possibility. They live in a one bedroom council flat. Paying for private doctors is simply out of the question.
 
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Markova21

Registered User
Jun 5, 2020
16
If I were your sister and had her concerns, I think I would have the mold tested myself. Is she in a position to have this done?
Hello. Thank you for replying. The mould in the loft was caused by a water leakage ( like in the US Programme). My sister and her husband are poor. They don't work and are on welfare. Her husband has been in this care home "for respite" to give my sister a break since March. But my sister thinks he has deteriorated so badly and is now being moved somewhere else, that he will never be well enough to return home. My sister has her own health problems so is unable to work. The council ( local housing authority) sent someone out months ago and he inspected the mould. Said for health reasons it has to be removed. No-one has been back since as apparently there is a long waiting list for the council to undertake repairs.
 

Markova21

Registered User
Jun 5, 2020
16
My sister was wondering if her husband could have somehow inhaled toxic spores from the mould, and they might still be inside his brain?
 

Markova21

Registered User
Jun 5, 2020
16
The doctor you mentioned is a GP, not a neurologist, and he apparently specialises in family and minor injuries.

I wonder if someone else is using his name?
I don't know. The website says they have Neurologists and when I posted a question to a Neurologist, he replied. He told me about it possibly being CIRS, and my sister has since told me this was the first time she had heard of this, as no-one in her husband's team has mentioned it.
 
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Markova21

Registered User
Jun 5, 2020
16
I have just contacted the website asking if they would confirm to me if the doctor is a Neurologist. He DID say it took him over an hour to look up the info I was talking about and described Stachybotris as very very rare. I know for a fact my brother in law's GP has never heard of it.
 

canary

Registered User
Feb 25, 2014
12,653
South coast
Just because someone using his name came online it doesnt necessarily mean that it is him. There are no end of people on the internet pretending to be someone else - its called catfishing. I can say that Im a 62 year old woman with a husband in cognitive decline and whose mother died from Alzheimers, but you cant know that its true - for all you know I might be a 40 year old male truck driver!

I know what it is like not having people listen to you - I myself spent some years saying there were problems with OH before someone listened to me, but you have to be very careful with the internet as there is a lot of fake medical stuff out there. Your sisters husband has a diagnosis of dementia. Why look for anything else?
 

Markova21

Registered User
Jun 5, 2020
16
Just because someone using his name came online it doesnt necessarily mean that it is him. There are no end of people on the internet pretending to be someone else - its called catfishing. I can say that Im a 62 year old woman with a husband in cognitive decline and whose mother died from Alzheimers, but you cant know that its true - for all you know I might be a 40 year old male truck driver!

I know what it is like not having people listen to you - I myself spent some years saying there were problems with OH before someone listened to me, but you have to be very careful with the internet as there is a lot of fake medical stuff out there. Your sisters husband has a diagnosis of dementia. Why look for anything else?
Thank you canary. I agree with you. But she is in denial I suppose and wants to think this mould in their flat is causing it all, and if there was some way of removing the mould in his brain he would be alright. No-one has sat her down and said to her the cause is NOT what she believes it to be. So the possibility, however remote or far-fetched, just goes round and round in her head every day.
 

Rosettastone57

Registered User
Oct 27, 2016
1,281
As the illness you're describing is very rare, then this is probably why mainstream medicine is dismissing it. I'm not medically trained but as others have said all the symptoms are typical of dementia, especially the paranoia, which is often considered almost diagnostic in itself. My mother-in-law had a mix of alzheimer's and vascular dementia and she was very much like your brother in law , especially with prompting to do anything. I've no magic answers I'm afraid. But if your sister is hoping for an answer which may bring a cure,she may be disappointed
 

Sarasa

Registered User
Apr 13, 2018
1,410
H @Markova21 , I guess your sister is hoping against hope that her husband has something that could be cured with the right anti-biotics or other treatment. The doctors that are treating him have come up with a diagnosis of dementia, and aren't suggesting anything else because the scans and his behaviour appear to be indicative of it. Has she talked to his doctor about her ideas, as he might then be able to explain more clearly why the dementia diagnosis. He is young to have dementia, but unfortunately it does happen.
I hope she manages to get some support, tricky at the moment I know.
 

Markova21

Registered User
Jun 5, 2020
16
As the illness you're describing is very rare, then this is probably why mainstream medicine is dismissing it. I'm not medically trained but as others have said all the symptoms are typical of dementia, especially the paranoia, which is often considered almost diagnostic in itself. My mother-in-law had a mix of alzheimer's and vascular dementia and she was very much like your brother in law , especially with prompting to do anything. I've no magic answers I'm afraid. But if your sister is hoping for an answer which may bring a cure,she may be disappointed
Thank you.
 

canary

Registered User
Feb 25, 2014
12,653
South coast
Yes, I can see that and I think we are all guilty of clutching at straws.

What I can say with certainty, though, is that as the MRI scan shows global atrophy, this cannot be reversed. Atrophy, basically means brain cell death ansd that is what causes dementia, so even if it were true, removing the mould would not reverse his symptoms.
 

Palerider

Registered User
Aug 9, 2015
1,824
North West
Just to help you @Markova21 I have done a quick search on Medline and PubMed databases (because I have free access to them) -there are no papers or case reports on Stachybotris causing neurodegeneration. It seems that it would also be highly unlikely as the blood brain barrier is a strong defence mechanism.

It may be difficult to accept the diagnosis, but the MRI scan shows atrophy -as far as I am aware this is a significant sign of dementia, but please google to reassure yourself before broaching this again with your sister. Denial can be a strong influence in how people reason things out and it must be hard for her to accept that there is an irreversible cause.
 

Markova21

Registered User
Jun 5, 2020
16
Thank you all for your replies. Really appreciated. A major factor in all this is my sister's own mental health problems, including OCD. She is obsessed about Stachybotrys poisoning being the cause atm. She lives in Manchester and I live in Northern Ireland. She phones me about 5 or 6 times a day, often in floods of tears, that he is not getting the help he needs and is slowly dying. She says she can hear the deterioration in his voice over the phone. She doesn't have a computer so she phones me asking me to contact or write to this one or that one to get them to listen to her and take her seriously. They don't, of course. She is not stupid and knows this. So over the past few months I suppose, on her behalf, it has become a kind of obsession for me too. She gave me a list of 5 different people and organisations to write to the other day, including the Center for Disease Control in Texas, who are featured in the documentary. I've sat pen poised to paper for the last two days, not knowing what to say or how to say it to all these different people and organisations, that will give her a bit of peace.
 

Palerider

Registered User
Aug 9, 2015
1,824
North West
For completion here is the search record. Where there are hits they had nothing to do with dementia (neurodegenration) and Stachybotris
1591369534652.png
 

imthedaughter

Registered User
Apr 3, 2019
313
Yes, I can see that and I think we are all guilty of clutching at straws.

What I can say with certainty, though, is that as the MRI scan shows global atrophy, this cannot be reversed. Atrophy, basically means brain cell death ansd that is what causes dementia, so even if it were true, removing the mould would not reverse his symptoms.
It's heartbreaking. I'd like to think removing the clots from my dad's brain would remove his dementia, but he has both clots and atrophy, and wouldn't likely survive the operation anyway. I'd love to know what caused my dad's dementia - the Dr seemed to indicate undiagnosed mental health (and dad always felt he had SAD) was a factor, or maybe he didn't pay enough attention to his diet, or maybe he didn't exercise enough... or maybe it's genetic. There doesn't seem to be any clear indication. I too love Forensic Files but I try to take them with a pinch of salt. I feel so sorry for your sister. Is she getting treated for her OCD and other issues? I have some experience of OCD support and it unfortunately is only made worse by external factors like this. Take good care, all of you.
 

Markova21

Registered User
Jun 5, 2020
16
Thank you all. I just wish the GP/Psychiatrist/whoever would actually sit her down and explain this to her then. She goes on to them about toxic mould and they sit there and say nothing. Not one person has definitively said anything to her.
 

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