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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
There is someone I have been corresponding with after posting about my brother in law on Facebook. She told me to dismiss out of hand anything people on this forum said. She said there wouldn't be many online groups who understand mould toxicity. She said to me that she suffered from mould illness for years and no-one believed her. She contacted a private clinic in the States, and it cost her eighteen hundred pounds. She said there is now a clinic that tests for micotoxins in the urine in London so it's a lot cheaper. It's called a micotoxin panel test. Turns out she was right all along. I'm just telling you all this, because I have two conflicting parties saying two different things to me. Thanks. ( She said they gave her binders like charcoal or chorella to take, in order to remove the toxic mould. And it worked.)
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,490
66
Toronto, Canada
I personally would not take information from a website regarding medical matters as 100%. Do have your sister contact the council again and remind them that the inspector said it had to be moved immediately. She should keep reminding them very politely every couple of weeks or so
 

Markova21

Registered User
Jun 5, 2020
16
I personally would not take information from a website regarding medical matters as 100%. Do have your sister contact the council again and remind them that the inspector said it had to be moved immediately. She should keep reminding them very politely every couple of weeks or so
Thank you. I suggested to my sister, that because her husband has not been living in the flat since 12 February, why is it that he keeps deteriorating, if he is no longer living in that environment? She seems to think it's because the toxic spores are still inside his brain and will be until they are removed. I just don't know. And as I said the experts are saying and explaining nothing at all to her.
 

Palerider

Registered User
Aug 9, 2015
1,804
North West
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.
I think it might be best to contact the professionals involved and have this conversation with them and ask that they meet with your sister and explain their findings. Its best to contact the secretary of the overseeing consultant and explain the problems and arrange a meeting.

I think its important to realise that there is no evidence of what your sister is convinced of and also the internet has some very dubious websites and postings -which unfortunately people do believe because they give hope, albeit a false one.
 

canary

Registered User
Feb 25, 2014
12,575
South coast
There is someone I have been corresponding with after posting about my brother in law on Facebook.
Do you know who this woman is?
Do you have independent verifiable proof that she had this and was cured, or do you only have her word for it?
You or your sister may end up paying out a lot of money with no result.
There are a lot of people out there (especially on facebook) who are willing to fleece a lot of desperate people - you only have to look at all the fake stuff about covid.
 

Markova21

Registered User
Jun 5, 2020
16
Do you know who this woman is?
Do you have independent verifiable proof that she had this and was cured, or do you only have her word for it?
You or your sister may end up paying out a lot of money with no result.
There are a lot of people out there (especially on facebook) who are willing to fleece a lot of desperate people - you only have to look at all the fake stuff about covid.
Thank you for this. Yes, it's important to exercise caution.
 

Sarasa

Registered User
Apr 13, 2018
1,367
I think @Palerider's suggestion to contact the secretary of the consultant and ask if they can talk to your sister. They probably won't get back to you due to patient confidentiality but at least they will be aware of her concerns. If you know her GP it might be worth doing the same thing.
As to the damp problem the GP might be able to help get the council moving about the damp due to the adverse effects on your sister's health.. Anther set of people to contact about the damp would be local counsellors. That might help your sister see that things are moving in the right direction in at least one area of her life.
I guess lockdown and not being able to see her husband doesn't help. Has she spoken to the care home manager about how he is generally and about his/her insights into his condition?
I am not a medical practitioner and have only a lay person's knowledge of dementia. I have done two excellent courses from the WIcking Dementia Centre in Australia, and recommend those if you want to understand more about the disease. They helped me a lot.
Finally please take anything on Facebook with a large dollop of caution. As I said I have no medical training, but I am a librarian and spent a lot of my career helping young people discern fact from fiction on the internet. Do double and triple check any information you find.
 

Markova21

Registered User
Jun 5, 2020
16
I think @Palerider's suggestion to contact the secretary of the consultant and ask if they can talk to your sister. They probably won't get back to you due to patient confidentiality but at least they will be aware of her concerns. If you know her GP it might be worth doing the same thing.
As to the damp problem the GP might be able to help get the council moving about the damp due to the adverse effects on your sister's health.. Anther set of people to contact about the damp would be local counsellors. That might help your sister see that things are moving in the right direction in at least one area of her life.
I guess lockdown and not being able to see her husband doesn't help. Has she spoken to the care home manager about how he is generally and about his/her insights into his condition?
I am not a medical practitioner and have only a lay person's knowledge of dementia. I have done two excellent courses from the WIcking Dementia Centre in Australia, and recommend those if you want to understand more about the disease. They helped me a lot.
Finally please take anything on Facebook with a large dollop of caution. As I said I have no medical training, but I am a librarian and spent a lot of my career helping young people discern fact from fiction on the internet. Do double and triple check any information you find.
Thank you Sarasa.
 

Whisperer

Registered User
Mar 27, 2017
147
Hampshire
I think @Palerider's suggestion to contact the secretary of the consultant and ask if they can talk to your sister. They probably won't get back to you due to patient confidentiality but at least they will be aware of her concerns. If you know her GP it might be worth doing the same thing.
As to the damp problem the GP might be able to help get the council moving about the damp due to the adverse effects on your sister's health.. Anther set of people to contact about the damp would be local counsellors. That might help your sister see that things are moving in the right direction in at least one area of her life.
I guess lockdown and not being able to see her husband doesn't help. Has she spoken to the care home manager about how he is generally and about his/her insights into his condition?
I am not a medical practitioner and have only a lay person's knowledge of dementia. I have done two excellent courses from the WIcking Dementia Centre in Australia, and recommend those if you want to understand more about the disease. They helped me a lot.
Finally please take anything on Facebook with a large dollop of caution. As I said I have no medical training, but I am a librarian and spent a lot of my career helping young people discern fact from fiction on the internet. Do double and triple check any information you find.
Hello Sarasa

Yes I will vouch for those corses as well. On a slightly different note I use to really worry in past years my mum refusing to go back to the Memory Clinic, was she missing out on medications which would help her? Most likely got Vascular Dementia based on her past medical history, so no real drug treatment available but your mind keeps playing with the concern ball.

Having professionals from a University spell out the facts, graphs, slides, drug effectiveness, periods, etc, made unpleasant reading in the early hours of the morning away from mum’s eyes and ears, allowing me to concentrate. That said it did a lot to help me. The internet is a great tool. Hey we are on this forum built on the internet. But there are a lot of dark corners, fake news, dubious claims, etc.