Hello my name is Pam, I am concerned about my 83 year old mum.

[PammieA]

Two weeks ago mum told me my Dad had gone missing, he is 85. She said he had gone out and not returned, but a stranger had turned up and he will not leave.
Unfortunately my parents aren't local (they live a 6 hour drive away), but I ring them every day, and visit every few months.
I spoke to Dad and he confirmed he was there, but Mum said she didn't recognise him, and mum was convinced it was not 'her husband' she has been telling family, friends & neighbours that her husband is missing.
Three months ago (October) while I was staying with my parents for a few days, she woke from an evening sleep on the sofa, and looked confused, saying my Dad was a burglar and she refused to let him sleep in her bed. We thought she was confused following her sleep, the next day she laughed about it,but kept saying "I really didn't recognise him"
Up until two weeks ago, she has seemed fine and didn't mention her not recognising my Dad.
Mum recognises everyone else facially and via telephone. She doesn't seem confused about anything else at all.
Mum has seen her GP, she has had bloods & urine tests to exclude infections ect - these were all normal. A memory test was done (she was with the GP over an hour), she passed everything asked, with no memory concerns. My Dad was with her, but she kept telling the Dr he was a stranger and not her husband. Her Dr, a couple of neighbours and one family member have been to their home to try to reinforce Dad was her husband.
Can this one isolated confusion (not recognising Dad), be a symptom of Dementia?
Should I keep telling my mum it is her husband and ask her questions, or listen to her telling me it isn't him?
The only other things I've noticed is Mum is talking lots about 'the old days' her childhood, my childhood and flitting from one topic to another (but she's done this for a few years) Also she used to be using her mobile phone, what's app messaging me everyday and calling me. But now I have to call her on the landline, she doesn't response to her mobile.
My parents have always been very independent and proud, they are both saying they don't need me to go.
I'm am an only child and miles away, worrying and not knowing what to think or do. Any advice would be gratefully received please.

 

[Sarasa]

Welcome to Dementia Support Forum @PammieA. Your mother could be in the early stages of dementia and managing to hide most of the symptoms from you. Have you managed to talk to your dad about any other concerns her has. People with dementia can be very good at managing to hide symptoms for a short while. It's called hosting. Have you spoken to your dad about your concerns and asked him if there is anything about your mother's behaviour apart from not recognising you that concerns him?
I think keep a record of any thing that seems a bit off, the not being able to use her mobile phone for instance and go back to the GP in a couple of months and discuss it with him again.
This is a very friendly and supportive place and I'm sure other will be along shortly with their suggestions.

 

[PammieA]

Welcome to Dementia Support Forum @PammieA. Your mother could be in the early stages of dementia and managing to hide most of the symptoms from you. Have you managed to talk to your dad about any other concerns her has. People with dementia can be very good at managing to hide symptoms for a short while. It's called hosting. Have you spoken to your dad about your concerns and asked him if there is anything about your mother's behaviour apart from not recognising you that concerns him?
I think keep a record of any thing that seems a bit off, the not being able to use her mobile phone for instance and go back to the GP in a couple of months and discuss it with him again.
This is a very friendly and supportive place and I'm sure other will be along shortly with their suggestions.

Thank you for your quick reply. I am finding it hard to talk to my Dad (he is my stepdad but has been for 40 years), as Mum is always around, she thinks he is controlling her and will not let him talk to me on the phone. He does have a mobile phone but doesn't ring or answers calls, only messages. He just keeps saying, "she'll be fine soon"

Welcome to Dementia Support Forum @PammieA. Your mother could be in the early stages of dementia and managing to hide most of the symptoms from you. Have you managed to talk to your dad about any other concerns her has. People with dementia can be very good at managing to hide symptoms for a short while. It's called hosting. Have you spoken to your dad about your concerns and asked him if there is anything about your mother's behaviour apart from not recognising you that concerns him?
I think keep a record of any thing that seems a bit off, the not being able to use her mobile phone for instance and go back to the GP in a couple of months and discuss it with him again.
This is a very friendly and supportive place and I'm sure other will be along shortly with their suggestions.

I have had some concerns for a while, but Dad has always said he hasn't and your Mum is fine, I think he's probably minimising and hiding his concerns from me.
Thank you for your reply and advice, I am really glad I have registered and look forward to some friendly support.

 

[Rayreadynow]

CT Scan?

 

[cymbid]

could it be , she thinks this second husband is an interloper and she is looking for her 1st husband

 

[PammieA]

Over the last few days my mum is saying that 'the man' in her house has been three different individuals, who have all come and said they are George her husband (at separate times), she said they all have different features!
When I speak to mum on the phone I am asking why she thinks they are not her husband? I have told her I have spoken to him and he is her husband. I have sent up to date photos of them both asking her to look at the photos of Dad.
I need some advice as to how I talk to mum, do I keep reassuring her it is her husband, question why she thinks it is not him?
Or do I avoid talking and just listen.

 

[Rayreadynow]

Over the last few days my mum is saying that 'the man' in her house has been three different individuals, who have all come and said they are George her husband (at separate times), she said they all have different features!
When I speak to mum on the phone I am asking why she thinks they are not her husband? I have told her I have spoken to him and he is her husband. I have sent up to date photos of them both asking her to look at the photos of Dad.
I need some advice as to how I talk to mum, do I keep reassuring her it is her husband, question why she thinks it is not him?
Or do I avoid talking and just listen.

You could just try saying ' ok mum I will ask someone else who he is'

 

[PammieA]

Thank you for replying. I will try that.

 

[PammieA]

Please can anyone tell me the actual process of assessments (tests, appointments) and diagnosis. And an average time.
I accept it is dependent on area and individuals.
My mum has another appointment with the GP next week, as mum's confusion is worsening. But she passed the basic 'memory test' with her GP last week.
What is the next steps, if the GP refers her on? Or will he not refer her, wait a certain length of time?

 

[Sarasa]

Hi @PammieA, I'd make sure that the GP has a bullet pointed list ahead of the appointment with all your concerns on it. My mum passed the mini-mental state exam but when the GP started to ask her questions about the neighbours he could see the depth of her confusion and paranoia. Mum thought the neighbours came into her small flat took things and then brought them back, as well as deliberately moving her stuff and stealing her electricity. He was trying hard to keep a straight face when she told him they'd gone to the chemists and tried to get her blood-pressure tablets.
The GP then referred mum to the memory clinic and ordered and MRI scan. This was in 2019 and it was a few weeks wait. Unfortunately mum refused to engage with the memory clinic though she did go for the scan, which didn't show anything obviously awry. However when she had a melt down in the surgery a few weeks after that the GP arranged for a psychiatrist to visit her at home and he thought it was vascular dementia.
I'd make sure someone goes to the GP appointment and prompt her about the problems with your dad. That should help the GP see that a referal is needed.
Now is the time to start talking to your dad about getting more help in, if he hasn't got any coming in already.

 

[Rayreadynow]

Hi @PammieA, I'd make sure that the GP has a bullet pointed list ahead of the appointment with all your concerns on it. My mum passed the mini-mental state exam but when the GP started to ask her questions about the neighbours he could see the depth of her confusion and paranoia. Mum thought the neighbours came into her small flat took things and then brought them back, as well as deliberately moving her stuff and stealing her electricity. He was trying hard to keep a straight face when she told him they'd gone to the chemists and tried to get her blood-pressure tablets.
The GP then referred mum to the memory clinic and ordered and MRI scan. This was in 2019 and it was a few weeks wait. Unfortunately mum refused to engage with the memory clinic though she did go for the scan, which didn't show anything obviously awry. However when she had a melt down in the surgery a few weeks after that the GP arranged for a psychiatrist to visit her at home and he thought it was vascular dementia.
I'd make sure someone goes to the GP appointment and prompt her about the problems with your dad. That should help the GP see that a referal is needed.
Now is the time to start talking to your dad about getting more help in, if he hasn't got any coming in already.

I think the scans are to really to rule out other possibilities like an infection or blood clot.

 

[Angel55]

Please can anyone tell me the actual process of assessments (tests, appointments) and diagnosis. And an average time.
I accept it is dependent on area and individuals.
My mum has another appointment with the GP next week, as mum's confusion is worsening. But she passed the basic 'memory test' with her GP last week.
What is the next steps, if the GP refers her on? Or will he not refer her, wait a certain length of time?

Hello ❤️

It can be lengthy. My Dad was diagnosed initially with MCI a few years ago and he was very good at presenting very well and is still very verbal now I might add but there is little substance behind the words. Even this year we were still being told that it was MCI however we kept our consistent and insistence that this was not just NCI and had not been so for some time and they needed to investigate further. There were other things going on as well which made a diagnosis tricky. Dad was formally diagnosed not long ago with a dementia. We haven't pressed for further tests to determine which one. From the time we noticed which was 2018/2019 to now (the pandemic came and halted things) so 5 years nearly, I guess.

If you keep a note of the things you notice that can be very helpful for diagnosis alongside tests, it is how a person is coping day to day etc and you could bring those up with the GP even if they won't talk to you directly you can still let them know and stress you would like further testing and the reason why.

 

[PammieA]

I think the scans are to really to rule out other possibilities like an infection or blood clot.

Thank you for your reply, and sharing your experience it has been really helpful. I think my Dad is in denial about some of the other symptoms, even though I have pointed them out. I'm finding it difficult as I don't live local to them. I have suggested I go and stay with them for a while but Dad has said no.
Mum is physically well, independent and mobile, so currently no help is required (even if it was, Dad wouldn't accept it)

I've told Dad he must tell the GP the truth and point out everything I've noticed over the last year, as he's said no to me going to the appointment.
I'm hoping the GP will refer mum to somewhere.

 

[Rayreadynow]

Don't hold your breath about the GP making a referral plus no one can make her go anywhere.

 

[Firecatcher]

My Mum suddenly stopped recognising my step dad but this was about 12 months after she was formally diagnosed with Alzheimer’s. She phoned me one day and told me my step dad had disappeared and she had a new man looking after her. It’s impossible to argue with a person with dementia so we had no choice other than to go along with it.

In terms of arranging further tests you need to be assertive with the GP. Pre diagnosis Mum noticed problems herself and refused to be brushed off. She got a referral to the memory clinic fairly quickly. She initially got diagnosed with mild cognitive impairment and Alzheimer’s six months later. To be honest I felt the MCI diagnosis was used as a bit of a sweetener and to prepare her for the worst. It was very obvious she had Alzheimer’s from the outset.

 

[PammieA]

Thank you so much for taking the time to reply, your information is helpful.
It has come as a real shock that my mum is saying my step dad is not there, but he has been replaced by strange men (3 different men, 1 who looks like her Dad)
Over the last week, these stories about stepdad leaving her and being missing have become more bizarre and her main focus of the conversation.
I try talking about other things but can't distract her.
My Stepdad is upset as mum keeps asking him to leave, saying she'll ring the police.

I thought the confusion and not recognising individuals close to them, came as Dementia became more advanced.
Do you think my Mum might have had Dementia for a while, but we haven't realised?
What other symptoms made it obvious to you, that your mum had Alzheimers before her diagnosis?
Sorry for the questions.

My stepdad is taking Mum to see the GP next Thursday, he's said he doesn't want me to go too. I'm finding this difficult.
I'm hoping the GP will refer Mum to the memory clinic, but she is quite assertive and apart from not knowing 'the man' in her home, she says she's not confused about anything else.
I'm hoping my stepdad will push for a referral.
Thank you for your time, everyone.

 

[PammieA]

Hello all, I last posted on 22st January, after concern that my mum did not recognise my dad.
Since then my mum was referred to the Community Mental Heath Team, they sent two CPN's to assess mum and said they thought it was 'delusions' specifically 'Capgras syndrome' brought on by an infection. No infection was found in her bloods or urine, both have been checked again recently, and all clear of infection.
Mum was given antipsychotic medication, this has been increased, due to her rapid decline.
Mum now has increased confusion, she is unsettled & agitated, she has become verbally angry towards Dad (or the imposter she intermittently has in her home), and she is not sleeping well - getting up regularly and wandering around.
A brain CT scan has been requested now.
I asked the CPN yesterday what they feel mum's symptoms could be, she has mentioned Frontal Lobe Dementia (FLD), due to the rapid onset.
However I have read the information on NHS website, it says FLD is slow onset and mostly affects younger people.

Has anyone got any experience of this type of dementia, or had similar experiences with a different diagnosis?

 

[Sarasa]

Hi @PammieA , though my mum's diagnosis was 'probable vascular dementia' the manager of her first care home and I thought there was a strong Frontal Temporal Lobe dimension to her dementia as she could have spectacular meltdowns if she didn't get her way and her logic was totally askew. Mum was 91 at the time.
Mum also got very confused about who people were. She often talked about me as though I was someone else and she thought my son was my brother and my brother was my long-dead dad. The last Christmas she was at home she thought my sister-in-law and her sister were sometimes themselves and sometimes the 'nice ladies' hired to help.
I think it might be an idea to ask for a review of medication. Obviously we can't diagnose or advise about what medication is suitable, but the fact your mum seems to have declined rapidly after being prescribed it might mean it doesn't suit her. I also wonder if your mum might have a UTI or other infection as those can play havoc with people with dementia.
I'd also make sure the GP knows exactly what is happening as it could well be that your step dad has been covering things up for some time and it is only now that things have got to the stage where your mum's confusion id becoming more obvious.

 

[canary]

Hello @PammieA

I asked the CPN yesterday what they feel mum's symptoms could be, she has mentioned Frontal Lobe Dementia (FLD), due to the rapid onset.
However I have read the information on NHS website, it says FLD is slow onset and mostly affects younger people.

Frontal lobe dementia is a bit of an umberella term for dementia which affects the frontal lobes - it could be FTD, or vascular dementia, or atypical Alzheimers, or another type of dementia, but if it starts by affecting the frontal lobes its considered a frontal lobe dementia.

Usually a frontal lobe dementia is due to FTD and this tends to affect younger people, but it doesnt always and the speed at which it progresses varies. And it might not be FTD, even if it is frontal lobe dementia

Id wait and see what the scan shows
xx

 

[PammieA]

Thank you Sara's, my mum did have a urine sample tested on Tuesday, it was negative.
Yes, I think my stepdad has been covering lots of Mum's symptoms for a while.
I have had concerns for over a year.
Mum has always been harsh & outspoken, this has increased, her nastiness is hard to accept.
She has also been ringing my 3 adult children telling them lies.
We are all struggling, especially as mum & stepdad live 300 miles from me.

Yes I know I need to wait for the scan results, no date for it as yet.