Issues with hiding dementia.

[Annie678]

Hi there,

My lovely parents are having a very hard time as my father seems to have dementia (symptoms started around start of pandemic) but they are still waiting for an official diagnosis and a visit to the memory clinic. He has a history of TIAs and is on medication for high blood pressure. My dad gets very confused and imagines things that aren’t happening which play over and over in his mind and he forces my mum to stay and sit with him and talk about one things he’s latched on to for ages. At other times he seems quite lucid and is just normal dad.

Today he thought he had somehow got involved in some TV court show he was watching and couldn’t see how to get out of it. He has a social care worker and carers do come to help in the day, but often with other people he seems absolutely fine. His care worker called during this episode this afternoon and mum was so glad as she feels people don’t believe her when she says she thinks he has dementia issues. However, he was completely lucid with the care worker and you would never have guessed anything was wrong. After the call he remarked that he felt he was being analysed on the phone so had to think carefully about what to say. A short while later he was back to worrying again. My question is has anyone experienced this before? Is it possible for someone to control their dementia symptoms and cover it up around non family members? His confused episodes are getting much worse and I have seen them and it is very hard to talk him back down to reality when he has one (I had to convince him the tv remote wasn’t affecting his balance and it took ages). If anyone has any experience of similar issues I would be very interested to know. Many thanks.

 

[Grannie G]

Is it possible for someone to control their dementia symptoms and cover it up around non family members?

It`s so common @Annie678 it has a name. It`s host/hostess mode.

No one understands how it can be when there is such confusion generally but it`s what happens.

It sometimes makes carers think they are exaggerating the symptoms and outsiders thinking the same.

 

[Felixcat1]

Hi there,

My lovely parents are having a very hard time as my father seems to have dementia (symptoms started around start of pandemic) but they are still waiting for an official diagnosis and a visit to the memory clinic. He has a history of TIAs and is on medication for high blood pressure. My dad gets very confused and imagines things that aren’t happening which play over and over in his mind and he forces my mum to stay and sit with him and talk about one things he’s latched on to for ages. At other times he seems quite lucid and is just normal dad.

Today he thought he had somehow got involved in some TV court show he was watching and couldn’t see how to get out of it. He has a social care worker and carers do come to help in the day, but often with other people he seems absolutely fine. His care worker called during this episode this afternoon and mum was so glad as she feels people don’t believe her when she says she thinks he has dementia issues. However, he was completely lucid with the care worker and you would never have guessed anything was wrong. After the call he remarked that he felt he was being analysed on the phone so had to think carefully about what to say. A short while later he was back to worrying again. My question is has anyone experienced this before? Is it possible for someone to control their dementia symptoms and cover it up around non family members? His confused episodes are getting much worse and I have seen them and it is very hard to talk him back down to reality when he has one (I had to convince him the tv remote wasn’t affecting his balance and it took ages). If anyone has any experience of similar issues I would be very interested to know. Many thanks.

I am experiencing exactly the same issues with my dad. It took a long time for my dad to receive his memory clinic assessment due to COVID and when we did eventually see the consultant for his diagnosis he was in complete denial. My dad has vascular dementia for which there is no treatment or medication to help as it is too dangerous for him to take with the medication he already takes. He is an expert at “host mode,” a term used when the PWD can come across completely normal when they meet new people. When they can relax after the person has gon the PWD is usually drained. It is very challenging to manage for the people caring for their loved one or other PWD. The other thing with vascular dementia is it is very unpredictable. The PWD can have times when they are really good and times when they are really bad, all depending on the amount of oxygen getting to the brain. I can’t offer any solutions but I hope sharing my experiences helps.

 

[Annie678]

It`s so common @Annie678 it has a name. It`s host/hostess mode.

No one understands how it can be when there is such confusion generally but it`s what happens.

It sometimes makes carers think they are exaggerating the symptoms and outsiders thinking the same.

Thank you so much. Just to know there is a recognised name for it helps immensely.

 

[Annie678]

I am experiencing exactly the same issues with my dad. It took a long time for my dad to receive his memory clinic assessment due to COVID and when we did eventually see the consultant for his diagnosis he was in complete denial. My dad has vascular dementia for which there is no treatment or medication to help as it is too dangerous for him to take with the medication he already takes. He is an expert at “host mode,” a term used when the PWD can come across completely normal when they meet new people. When they can relax after the person has gon the PWD is usually drained. It is very challenging to manage for the people caring for their loved one or other PWD. The other thing with vascular dementia is it is very unpredictable. The PWD can have times when they are really good and times when they are really bad, all depending on the amount of oxygen getting to the brain. I can’t offer any solutions but I hope sharing my experiences helps.

Thank you so much for replying, this has really helped to know it is a recognised condition. My mum is enormously comforted to hear she is not alone in experiencing this horrible aspect of the dementia. Best of luck with your own dad.

 

[Jaded'n'faded]

Oh, it's a 'thing' alright! When mum hit her head and ended up in hospital, she greeted me with such things as' How did you find me? Did my parents tell you I was here? I've been in a plane crash and was helping with the evacuation - there are dead children everywhere.' She barely knew me and had completely forgotten the existence of my children.

Before the fall she'd been fine, living alone, independent. I knew she had dementia but she was undiagnosed and... managing.

The neuro consultant saw her at the hospital and talked with her for 10 minutes then spoke to me later. I expressed my concerns re. dementia and he scoffed and said she was absolutely fine - nothing wrong with her brain. I dug a bit deeper and he repeated their conversation - it was all completey untrue! She'd just made stuff up - how she was a former headmistress, her son and daughter were doctors, lived across the road, etc etc. None of it remotely true but boy, was she convincing!

A note of caution - I later had trouble convincing the social worker that she needed to be in the care home for the same reason - mum went into hostess mode and made me look like a fool and a liar

 

[Cazcaz]

Hi there,

My lovely parents are having a very hard time as my father seems to have dementia (symptoms started around start of pandemic) but they are still waiting for an official diagnosis and a visit to the memory clinic. He has a history of TIAs and is on medication for high blood pressure. My dad gets very confused and imagines things that aren’t happening which play over and over in his mind and he forces my mum to stay and sit with him and talk about one things he’s latched on to for ages. At other times he seems quite lucid and is just normal dad.

Today he thought he had somehow got involved in some TV court show he was watching and couldn’t see how to get out of it. He has a social care worker and carers do come to help in the day, but often with other people he seems absolutely fine. His care worker called during this episode this afternoon and mum was so glad as she feels people don’t believe her when she says she thinks he has dementia issues. However, he was completely lucid with the care worker and you would never have guessed anything was wrong. After the call he remarked that he felt he was being analysed on the phone so had to think carefully about what to say. A short while later he was back to worrying again. My question is has anyone experienced this before? Is it possible for someone to control their dementia symptoms and cover it up around non family members? His confused episodes are getting much worse and I have seen them and it is very hard to talk him back down to reality when he has one (I had to convince him the tv remote wasn’t affecting his balance and it took ages). If anyone has any experience of similar issues I would be very interested to know. Many thanks.

This is definitely a ‘thing’. My mother was diagnosed with Alzheimer’s in February, although we were aware of issues for a while prior to that.

She is an expert at host mode.

Last Christmas (so about 2 months before her diagnosis) her sisters visited, having been told by us of mum’s decline, warned of her bad memory and odd conversations.…..Mum was on perfect form, 100% her old self. Even I was almost convinced she was some how “better”. 10 minutes after the sisters left, mum was talking about how she wanted to go shopping for clothes (it was about 9pm) and couldn’t understand why the shops would be closed “if I want to buy something, they should be open!!!” No amount of explaining worked. Finally distracted her with the tv, 10 minutes after that, mum was asleep, exhausted.

 

[Felixcat1]

Thank you so much for replying, this has really helped to know it is a recognised condition. My mum is enormously comforted to hear she is not alone in experiencing this horrible aspect of the dementia. Best of luck with your own dad.

Thank you and good luck with your mum.

 

[Felixcat1]

Oh, it's a 'thing' alright! When mum hit her head and ended up in hospital, she greeted me with such things as' How did you find me? Did my parents tell you I was here? I've been in a plane crash and was helping with the evacuation - there are dead children everywhere.' She barely knew me and had completely forgotten the existence of my children.

Before the fall she'd been fine, living alone, independent. I knew she had dementia but she was undiagnosed and... managing.

The neuro consultant saw her at the hospital and talked with her for 10 minutes then spoke to me later. I expressed my concerns re. dementia and he scoffed and said she was absolutely fine - nothing wrong with her brain. I dug a bit deeper and he repeated their conversation - it was all completey untrue! She'd just made stuff up - how she was a former headmistress, her son and daughter were doctors, lived across the road, etc etc. None of it remotely true but boy, was she convincing!

A note of caution - I later had trouble convincing the social worker that she needed to be in the care home for the same reason - mum went into hostess mode and made me look like a fool and a liar

I know how you feel ?

 

[DesperateofDevon]

Yep it’s a thing! Social services / GP always take best day scenario - never mind the other 99% ?‍♀️
keep diary documentation of issues it really helps
(( hugs))

 

[Annie678]

Hi there,

My lovely parents are having a very hard time as my father seems to have dementia (symptoms started around start of pandemic) but they are still waiting for an official diagnosis and a visit to the memory clinic. He has a history of TIAs and is on medication for high blood pressure. My dad gets very confused and imagines things that aren’t happening which play over and over in his mind and he forces my mum to stay and sit with him and talk about one things he’s latched on to for ages. At other times he seems quite lucid and is just normal dad.

Today he thought he had somehow got involved in some TV court show he was watching and couldn’t see how to get out of it. He has a social care worker and carers do come to help in the day, but often with other people he seems absolutely fine. His care worker called during this episode this afternoon and mum was so glad as she feels people don’t believe her when she says she thinks he has dementia issues. However, he was completely lucid with the care worker and you would never have guessed anything was wrong. After the call he remarked that he felt he was being analysed on the phone so had to think carefully about what to say. A short while later he was back to worrying again. My question is has anyone experienced this before? Is it possible for someone to control their dementia symptoms and cover it up around non family members? His confused episodes are getting much worse and I have seen them and it is very hard to talk him back down to reality when he has one (I had to convince him the tv remote wasn’t affecting his balance and it took ages). If anyone has any experience of similar issues I would be very interested to know. Many thanks.

Thanks to everyone who read and offered advice to my question. My dad sadly passed away in hospital last week with pneumonia. It’s devastating how quickly things deteriorated and they diagnosed vascular dementia as an underlying factor. My heart goes out to everyone struggling with this cruel illness. My thoughts are with you all. Annie xx

 

[Grannie G]

How dreadfully sad for you @Annie678.

Even though your dad didn`t have a formal diagnosis, your suspicions were correct. People with dementia have a much more severe reaction to any infection than those who do not have dementia. and this proved to be with your dad.

However shocked you are please take comfort in the knowledge he has been spared a most distressing long progression.

 

[Cazcaz]

Thanks to everyone who read and offered advice to my question. My dad sadly passed away in hospital last week with pneumonia. It’s devastating how quickly things deteriorated and they diagnosed vascular dementia as an underlying factor. My heart goes out to everyone struggling with this cruel illness. My thoughts are with you all. Annie xx

I’m so sorry to hear of your dad’s passing.

I know it’s not much consolation but at least you know the suggestion of dementia was correct and that he has avoided a long, slow deterioration. You’ll always know him as he was, not how he would have been if this awful disease had taken him from you years later.

Sending love.

 

[canary]

Im so sorry for your loss. When they pass away so quickly like that it can be really shocking.
(((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))

 

[Sarasa]

I'm so sorry to hear that @Annie678. I hope your mum is managing OK. Don't forget to look after yourself as well.

 

[Bunpoots]

My condolences to you and your mum @Annie678 . You must be feeling very shocked right now.