Speed of loss of recognition?

[sue2108]

Hello all
I know there’s no answer to this as everyone is different but I’m wondering if anyone’s experience might help me come to terms with this….
My lovely husband has moderate mixed dementia (vascular and Alzheimer’s) and hasn’t seemed to recognise anyone other than me for a long time (2years or so). He manages to mask this so a lot of people think there’s nothing wrong.
He knows who he is and he knows me and I find this quite difficult at times. He denies there’s anything wrong with him, and can get verbally aggressive if anyone (docs etc) suggests otherwise. So I can’t bring anyone into the house to help, and he just wants me all the time and wants to go everywhere I go ( he doesn’t understand why he can’t come with me to the hairdresser tomorrow 🙁). I can still leave him on his own for a couple of hours or do, and as for the social services they signed him off a while ago saying “ not much wrong with him”
He is slowly deteriorating memory wise although others cannot see this. He wants “entertaining “ all the time and forgets we’ve just been out. “What are we doing now?”

So my question is will he wake up one day and not know me ? Or might that happen at any time in bits ? So might he know me then not know me a bit later?

Thanks for reading. I find this forum really lovely and helpful 😊
I’m feeling very weary and a bit fragile hence my posting this .

 

[sapphire turner]

Hi Sue
My husband was diagnosed with Alzheimer’s this year, and with non specific dementia in 2020, although he hasn’t been right for at least seven years.
If I had a pound for every time someone has said “well he seems alright to me” I would be very well off!

It is quite an amazing skill to be able to put a front of normality on for other people when he is clearly struggling with everyday life. It really takes it out of him pretending to be normal tho, it can take days to recover from the effort.

Like your husband he never wants to let me out of his sight, which is exhausting. We made a deal that if he would accept a personal assistant (carer) coming in two mornings a week to take him out for dog walks and museum trips, then I would book a holiday for the two of us. Both things well outside our personal comfort level but it worked out okay. He absolutely won’t join in any get together involving other people with dementia tho, unfortunately.

I think I would go crazy (even more than I am now) if I didn’t get regular breaks.
Sending love ❤️

 

[TonyDB]

Hi there,

i am getting a similar situation with my wife, this morning up to lunch time we were just fine, and then with no visible or other cues, she hates me, is ranting and raving. From the things she has said it is clear to me that I am now a previous partner from something like 40+ years ago… I have had to leave her for a while, but I know she is in a bad place and may take a time to settle back down… Hopefully at this point she will recognise me again!

Whats worse is that if we get a visit from our local Mental Health Team, or visit the GP or any other health professional, the act she puts on is amazing, and most of these people don’t see the problems I see…

its all very frustrating, emotionally draining, and of course horrible for my wife as she gets very anxious, upset, confused and worked up about it all…

Sending good wishes and lots of patience, and give yourself, even if they are small, physical gaps, that can help,

TonyDB

 

[rosiedog1]

I know exactly where you are all coming from. My mum was diagnosed with alzheimer's this time last year. The psychiatrist visited mum at home and said that she had early onset dementia. I disagreed with this diagnosis because I knew she was much worse than she appeared to be.
Mum decided to go into a care home, one she chose, she never settled down and then the true extent of the illness showed itself. Within 3 months we were told to move her as they couldn't cope with her anger and her weird obsessions. We moved her to a full scale dementia home where after 3 weeks she fell and broke her hip, but it was also found she had pnuemonia, so consequently she passed away at the end of February. She was 93, so it was expected.
Now with hindsight I know she had been suffering for at least 7 years. As a district said to me one day, for people who have alzheimer's, are clever and crafty and they do indeed hide their symtoms, but when mum went into a home, she of course couldn't hide it any more.
I wish you all the best of luck, in this extremely difficult time, my heart goes out to you, from one who knows what it is like.

 

[sue2108]

Hi Sue
My husband was diagnosed with Alzheimer’s this year, and with non specific dementia in 2020, although he hasn’t been right for at least seven years.
If I had a pound for every time someone has said “well he seems alright to me” I would be very well off!

It is quite an amazing skill to be able to put a front of normality on for other people when he is clearly struggling with everyday life. It really takes it out of him pretending to be normal tho, it can take days to recover from the effort.

Like your husband he never wants to let me out of his sight, which is exhausting. We made a deal that if he would accept a personal assistant (carer) coming in two mornings a week to take him out for dog walks and museum trips, then I would book a holiday for the two of us. Both things well outside our personal comfort level but it worked out okay. He absolutely won’t join in any get together involving other people with dementia tho, unfortunately.

I think I would go crazy (even more than I am now) if I didn’t get regular breaks.
Sending love ❤️

Thank you - yes my hubby isn’t very sociable so the various dementia groups are a no no.
He won’t have anyone else in the house at the moment although I’m considering getting a “cleaner” and hope that works.
My regular breaks are often an hour “having a lie down” which he accepts.

 

[sue2108]

I know exactly where you are all coming from. My mum was diagnosed with alzheimer's this time last year. The psychiatrist visited mum at home and said that she had early onset dementia. I disagreed with this diagnosis because I knew she was much worse than she appeared to be.
Mum decided to go into a care home, one she chose, she never settled down and then the true extent of the illness showed itself. Within 3 months we were told to move her as they couldn't cope with her anger and her weird obsessions. We moved her to a full scale dementia home where after 3 weeks she fell and broke her hip, but it was also found she had pnuemonia, so consequently she passed away at the end of February. She was 93, so it was expected.
Now with hindsight I know she had been suffering for at least 7 years. As a district said to me one day, for people who have alzheimer's, are clever and crafty and they do indeed hide their symtoms, but when mum went into a home, she of course couldn't hide it any more.
I wish you all the best of luck, in this extremely difficult time, my heart goes out to you, from one who knows what it is like.

 

[sue2108]

Thank you - it’s minefield isn’t it ?

 

[sue2108]

Hi there,

i am getting a similar situation with my wife, this morning up to lunch time we were just fine, and then with no visible or other cues, she hates me, is ranting and raving. From the things she has said it is clear to me that I am now a previous partner from something like 40+ years ago… I have had to leave her for a while, but I know she is in a bad place and may take a time to settle back down… Hopefully at this point she will recognise me again!

Whats worse is that if we get a visit from our local Mental Health Team, or visit the GP or any other health professional, the act she puts on is amazing, and most of these people don’t see the problems I see…

its all very frustrating, emotionally draining, and of course horrible for my wife as she gets very anxious, upset, confused and worked up about it all…

Sending good wishes and lots of patience, and give yourself, even if they are small, physical gaps, that can help,

TonyDB

Thank you / my small breaks are currently “having a lie down upstairs “ and watching player or reading x

 

[annieka 56]

Hello all
I know there’s no answer to this as everyone is different but I’m wondering if anyone’s experience might help me come to terms with this….
My lovely husband has moderate mixed dementia (vascular and Alzheimer’s) and hasn’t seemed to recognise anyone other than me for a long time (2years or so). He manages to mask this so a lot of people think there’s nothing wrong.
He knows who he is and he knows me and I find this quite difficult at times. He denies there’s anything wrong with him, and can get verbally aggressive if anyone (docs etc) suggests otherwise. So I can’t bring anyone into the house to help, and he just wants me all the time and wants to go everywhere I go ( he doesn’t understand why he can’t come with me to the hairdresser tomorrow 🙁). I can still leave him on his own for a couple of hours or do, and as for the social services they signed him off a while ago saying “ not much wrong with him”
He is slowly deteriorating memory wise although others cannot see this. He wants “entertaining “ all the time and forgets we’ve just been out. “What are we doing now?”

So my question is will he wake up one day and not know me ? Or might that happen at any time in bits ? So might he know me then not know me a bit later?

Thanks for reading. I find this forum really lovely and helpful 😊
I’m feeling very weary and a bit fragile hence my posting this .

Hi Sue

In our own experience, things like lack of recognition didn't happen suddenly or consistently.

(My husband's diagnosis of PCA dementia was in 2018 but with hindsight he'd been having symptoms since 2013, having to take early retirement in 2014 due to stress at work.)

For a while when looking at photos - and when he could communicate verbally - he would see a photo of himself and say "it's my dad" 😢 When seeing a photo of our eldest son in his mid 30s he would say " it's me. "

(As for me, well I hardly recognise myself at times and feel that the mirror lies...)
But he's most familiar with me, after 40 years. When he was in a lovely respite place for a month I asked the senior carer if she thought he recognised me. We were walking him back to his chair at the time. She said "watch" and tried to take his hand which he rejected, but when I took his hand, he held it nicely and she said he recognises you, definitely.

I don't know if this helps at all?

Oh, the going out thing! I think we spent a good 3 years of going out every day, sometimes twice for drives with the radio on which he enjoyed and to a park with our dog which all came a bit stressful really but it was the only thing he wanted to do. The drives got shorter and shorter, the dog had to stay at home.

Then over a couple of weeks last September it became physically impossible to get him in the car, he just forgot how to do it. That bit happened quite suddenly in our case.


Good luck x

 

[sue2108]

Hi Sue

In our own experience, things like lack of recognition didn't happen suddenly or consistently.

(My husband's diagnosis of PCA dementia was in 2018 but with hindsight he'd been having symptoms since 2013, having to take early retirement in 2014 due to stress at work.)

For a while when looking at photos - and when he could communicate verbally - he would see a photo of himself and say "it's my dad" 😢 When seeing a photo of our eldest son in his mid 30s he would say " it's me. "

(As for me, well I hardly recognise myself at times and feel that the mirror lies...)
But he's most familiar with me, after 40 years. When he was in a lovely respite place for a month I asked the senior carer if she thought he recognised me. We were walking him back to his chair at the time. She said "watch" and tried to take his hand which he rejected, but when I took his hand, he held it nicely and she said he recognises you, definitely.

I don't know if this helps at all?

Oh, the going out thing! I think we spent a good 3 years of going out every day, sometimes twice for drives with the radio on which he enjoyed and to a park with our dog which all came a bit stressful really but it was the only thing he wanted to do. The drives got shorter and shorter, the dog had to stay at home.

Then over a couple of weeks last September it became physically impossible to get him in the car, he just forgot how to do it. That bit happened quite suddenly in our case.


Good luck x

Thank you - yes that is helpful. Thanks for responding

 

[iamlost]

Hello all
I know there’s no answer to this as everyone is different but I’m wondering if anyone’s experience might help me come to terms with this….
My lovely husband has moderate mixed dementia (vascular and Alzheimer’s) and hasn’t seemed to recognise anyone other than me for a long time (2years or so). He manages to mask this so a lot of people think there’s nothing wrong.
He knows who he is and he knows me and I find this quite difficult at times. He denies there’s anything wrong with him, and can get verbally aggressive if anyone (docs etc) suggests otherwise. So I can’t bring anyone into the house to help, and he just wants me all the time and wants to go everywhere I go ( he doesn’t understand why he can’t come with me to the hairdresser tomorrow 🙁). I can still leave him on his own for a couple of hours or do, and as for the social services they signed him off a while ago saying “ not much wrong with him”
He is slowly deteriorating memory wise although others cannot see this. He wants “entertaining “ all the time and forgets we’ve just been out. “What are we doing now?”

So my question is will he wake up one day and not know me ? Or might that happen at any time in bits ? So might he know me then not know me a bit later?

Thanks for reading. I find this forum really lovely and helpful 😊
I’m feeling very weary and a bit fragile hence my posting this .

 

[iamlost]

Hi. I am chris (iamlost)We seem to have some of same problems. my husband wants me with him all the time. if i am in a different part of the house, he starts yelling for me and can't remember why he called or says he just wants to know where I am. neither of us can hear well but insists that he has no hearing loss. recently he has hallucinations. he insists that is on because he can hear it running when it is off, he insist that can feel the floor vibrating, gets out of control when no one can hear it nor feel the vibration. he wants to make sure I am coming to bed and if i'm up to long he gets up and wants to know when I am coming to bed several times.

 

[iamlost]

Hi Sue

In our own experience, things like lack of recognition didn't happen suddenly or consistently.

(My husband's diagnosis of PCA dementia was in 2018 but with hindsight he'd been having symptoms since 2013, having to take early retirement in 2014 due to stress at work.)

For a while when looking at photos - and when he could communicate verbally - he would see a photo of himself and say "it's my dad" 😢 When seeing a photo of our eldest son in his mid 30s he would say " it's me. "

(As for me, well I hardly recognise myself at times and feel that the mirror lies...)
But he's most familiar with me, after 40 years. When he was in a lovely respite place for a month I asked the senior carer if she thought he recognised me. We were walking him back to his chair at the time. She said "watch" and tried to take his hand which he rejected, but when I took his hand, he held it nicely and she said he recognises you, definitely.

I don't know if this helps at all?

Oh, the going out thing! I think we spent a good 3 years of going out every day, sometimes twice for drives with the radio on which he enjoyed and to a park with our dog which all came a bit stressful really but it was the only thing he wanted to do. The drives got shorter and shorter, the dog had to stay at home.

Then over a couple of weeks last September it became physically impossible to get him in the car, he just forgot how to do it. That bit happened quite suddenly in our case.


Good luck x