Mum mid stage with no diagnosis

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))) @Anna T

I hear your distress. You are overwhelmed.
All the things that you describe are usual in dementia - the fluctuating abilities, the insisting that there is nothing wrong with them, the thinking that there are other people in their home, the not recognising their own home or relatives, the obsessing over money, the hiding things. It all sounds very, very much like mid-stage dementia.
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Thanks for the hugs...
The memory clinic didn’t give any type of diagnosis relative to her memory not even MCI - I always go with mum.
They actually told her for years that she has Charles Bonnet which is a phenomenon related to loss of vision only without any other health issues - I told them that this was incorrect mum experiences delusional hallucinations which is a symptom of a psychotic disorder of which Charles Bonnet is not - they just don’t know or are unwilling to give a diagnosis that we (family) can see ..
And yes I’m overwhelmed massively ..
Thankyou for asking and hope you have a good day !
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Hi @Anna T . I echo everybody else . Fantastic support here from everyone , lots of advice and support . They have helped me through a difficult patch . I agree that there is very little support . Have you been in touch with Admiral Nurse ? I found them really helpful , had some advice but they made me feel I was doing the best /right things for my PWD. I’m sorry you feel so alone , always people here to vent off to. We all in a similar situation. I hope posting helps you and if you get the chance to read some posts you will be amazed how much more you will learn here than anywhere else. Take care .
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Thank you - I haven’t as yet been in touch with Admiral Nurses I did ask my mums GP about them last week and spectacularly he had never heard of or had any knowledge of Admiral Nurses!!!??
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Hi @Anna T.....your post echoes our experience of my FiL.....we have suspected he has at least the start of dementia for the last couple of years. He spent some time in hospital earlier this year, where he displayed some worrying behaviour, and was then discharged back to his own home. The Memory psych came out to assess him and said he had Delirium, which can present very much like dementia.....it often goes eventually but in the elderly it can be unpredictable and they never go back to normal (he's 90). Over the past couple of months he's a bit better, can hold a simple conversation, heat his microwave meals, and most of the time recognises his sons (tho sometime confuses their names). We still think he has underlying dementia.....but the thing is, if it's dementia or delirium it's just a name and neither will get better. So we've tried to step back from diagnosis.....it only seems to be useful for medication and council rate refund.....and just deal with how he is.


Is it possible your mum has something similar? Regardless of whether she has dementia or not I would think she is still eligible for carers etc from the council if she is not self-funding. You might have to stamp your feet a bit tho :rolleyes: This is a very cruel disease, and from what I read on the forum, the carers suffer the most in a way, because they are grieving for life and experiences lost, whereas many pwds are, maybe thankfully, unaware. Keep posting, there are lovely people on this forum who always have a listening ear
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Thankyou - lol I have had to stamp my feet a lot during the past couple of years it’s always about fighting to get any kind of support which obviously is the last thing you want to do when you are in such emotional turmoil, it’s just the way it is I guess dealing with “professionals” with no concept or experience I’ve yet to meet anybody GP/Psychiatrist/CPN/Social Worker that had added any value to my mums circumstances..
All we can do is love and support our loved one as you are doing for your FIL - take care
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
Thanks for the hugs...
The memory clinic didn’t give any type of diagnosis relative to her memory not even MCI - I always go with mum.
They actually told her for years that she has Charles Bonnet which is a phenomenon related to loss of vision only without any other health issues - I told them that this was incorrect mum experiences delusional hallucinations which is a symptom of a psychotic disorder of which Charles Bonnet is not - they just don’t know or are unwilling to give a diagnosis that we (family) can see ..
And yes I’m overwhelmed massively ..
Thankyou for asking and hope you have a good day !
Someone will be along soon with better advice, but I understand that Charles Bonnet syndrome does cause hallucinations. My mother-in-law had many of the symptoms you're describing way before the dementia diagnosis, but she had been diagnosed with a personality disorder. It took family members a long time to twig anything else going on. This eventually developed into mixed dementia. I feel for you, very difficult situation
 

Sirena

Registered User
Feb 27, 2018
2,324
0
So difficult for you @Anna T
My mother did not have such extreme symptoms, her diagnosis was Alzheimers and even that took a while to achieve. I know other members have talked about a relative with Charles Bonnet syndrome, hopefully one of them will see your thread. It is so difficult when the relative can see all these symptoms and yet you get no support or even acknowledgment.
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Someone will be along soon with better advice, but I understand that Charles Bonnet syndrome does cause hallucinations. My mother-in-law had many of the symptoms you're describing way before the dementia diagnosis, but she had been diagnosed with a personality disorder. It took family members a long time to twig anything else going on. This eventually developed into mixed dementia. I feel for you, very difficult situation
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Thanks @Rosettastone57 @Sirena
Getting a diagnosis does seem to be very difficult for some people and easier for others it’s a shame their isn’t a National framework to help everybody regardless of where you live (in the UK)
It’s also important for medical professionals to know the difference between hallucinations from vision loss (Charles Bonnet) and hallucinations due to Dementia like symptoms ..and on it goes...!
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Thanks to everybody who took the time to comment on my first post - I decided to register here because I’m so distraught that this is happening to my mum.

I could easily cry all day and be defeated by my emotions but that will get me and most importantly my mum absolutely no where!

So if you are browsing this forum like I was before I registered please take the plunge and dive in so you can receive support and be heard and hopefully feel a little more in control! xx
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Charles Bonnet is something that happens when you have vision loss resulting in an area that cannot be seen where the brain expects there to be sight. The brain then tries to "fill in the gap" with stuff from memory and/or imagination.- its a bit like a waking dream, but just in the area of sight loss. Its particularly common in things like stroke and macular degeneration, but you can also get it from things like glaucoma and diabetic sight loss.

Im unsure why you feel it is not Charles Bonnet, considering that you seem to imply that she she has had this for many years and that she has some sight loss. Mind you, unless there is talk about medication to stop the hallucinations the exact reason for them is probably not relevant now
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Charles Bonnet is something that happens when you have vision loss resulting in an area that cannot be seen where the brain expects there to be sight. The brain then tries to "fill in the gap" with stuff from memory and/or imagination.- its a bit like a waking dream, but just in the area of sight loss. Its particularly common in things like stroke and macular degeneration, but you can also get it from things like glaucoma and diabetic sight loss.

Im unsure why you feel it is not Charles Bonnet, considering that you seem to imply that she she has had this for many years and that she has some sight loss. Mind you, unless there is talk about medication to stop the hallucinations the exact reason for them is probably not relevant now
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
Mums had Macular Degeneration for over 20 years so I’m well aware of the effects of Charles Bonnet.
It's important to be aware that hallucinations associated with CBS are caused by failing eyesight only - they are not caused by a mental health problems or dementia, there’s a massive distinction between the root cause.
If someone has psychosis and believes the hallucinations are real this does not correlate with hallucinations experienced by sight loss when the recipient although may be shocked at first - knows that the hallucinations are not real .
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, Im aware about the root cause of Charles Bonnet. Were the hallucinations always associated with psychosis, or did the psychosis come later? Is it possible that it is Charles Bonnet, but she is misinterpreting the images due to dementia? Its not always easy to unravel what is going on when there are two or more coexisting problems.

But, as I said, its probably academic
 

Anna T

Registered User
Jul 1, 2019
43
0
Manchester
The point that is overlooked is that there is no psychosis with CBS - the psychosis which started a couple of years ago is relative to dementia
I’ve no idea experts know very little about CBS my primary concern is getting a diagnosis that may help alleviate the symptoms with the appropriate meds
 

Rosettastone57

Registered User
Oct 27, 2016
1,839
0
The point that is overlooked is that there is no psychosis with CBS - the psychosis which started a couple of years ago is relative to dementia
I’ve no idea experts know very little about CBS my primary concern is getting a diagnosis that may help alleviate the symptoms with the appropriate meds

It is difficult to separate two conditions going on at the same time, I know as I mentioned in my earlier post. My mother-in-law's behaviour for many years mimicked dementia, without the memory loss. She was treated for depression initially, but eventually the alzheimer's became more apparent. My mother-in-law never had any medication for dementia. Due to her cardiovascular problems, any alzheimer's medication would be more of a risk to her . If you're hoping medication might help,there's no guarantee it will be prescribed.