Fluctuation in capacity and cognition

[Greenie Pie]

My mother today performed v well in a mmse test 22. Previously the score was dramatically lower don't know exactly how much much but having been there both times it was apparent.

She has days where she can hardly walk , drinks invisible drinks , has no memory of having been to hospital and wants to go again within 1 hour of returning . Faecally incontinent . Visions, hallucnations the whole works . Paranoia etc

However this last week or so superficially she would appear "dementia -lessl" > having said that scratch only slightly beneath surface and it does all unravel. But to those not in the know all would seem okay. Her temper is still vile and mood too. However the increased score and general kind talking from Psychiatric nurse empowers her to believe she can do it all . Go out alone , Live alone etc

What do i do accept the current high ( I have seen these before - although not as good as this ) and say yes go for it or wait for the next decline which there will be .

She has been diagnosed with sub cortical vascular dementia. She also has renal failure which she has dialysis three times a week - this also has a profound effect on cognition.

To be honest the better she feels the harder it is in the house a sort of semi mania is best way i can explain it .

She lives with us ( husband and son 6) and we are on this continual roller coaster waiting for the fall .I know she cant live alone but things are so bad here that i am tempted to say go for it and today's score would perhaps indicate she could .

Are these profound ups and downs the norm ?
cheers G

 

[Grannie G]

Hello G

When my husband was diagnosed his score was 23 and although he had many quite good times there was no way he would have been able to live alone.

Has the psychiatric nurse considered whether or not your mother might be fine during the good times but at risk during the not so good times.

I have always believed people who live alone need 24 hour residential care well before those who live with family or a partner.

This does not mean you should feel bound to keep up with the arrangement to have your mother living with you if it is affecting the well being of the family. It`s a very difficult decision to make but my rule of thumb is should the well being of one family member be considered more important than the well being of three.

 

[Rich PCA Carer]

I'm no expert, but from what I have read, fluctuations and hallucinations are more typical with Lewy Body dementia.

It is nice for professionals to help maintain a positive outlook for our loved ones, but in this case the nurse has done you no favours at all. It must be so hard when they feel that there is nothing wrong. It's bad enough for me when my wife get cocky about her performance and I can still reason with her to make her realise that she needs to be careful. I am not looking forward to the time when this no longer works.

All the best.

 

[looviloo]

I can relate to this. My dad was also diagnosed with sub cortical vascular dementia, and had/has highs and lows. He'll have a 'dip' and period of confusion followed by a more stable period of relatively good lucidity.

Generally though, the overall pattern is one of decline. Dad is now at the stage of very slurred speech and shuffling walk, unsteadiness when standing etc. Yet just last week he told me he was going to buy a 'push bike'! Sadly he did eventually suffer a fall, which resulting in long term care.

While he was still at home (on his own) he had hallucinations, mostly auditory. And paranoia, which is still there; he thinks people pinch his tissues, move clothes around, sneak into his room at night and so on.

Yet other times he talks very logically about his finances (always was good at maths!), or current affairs.

It's very odd, and frustrating for all of us, but as a family we've learned to accept it. Except dad of course. Who still wonders if his driving license is valid so that one day he'll get back behind the wheel...

Have edited to add: when dad fell and was hospitalised it was the devil's own job for us to make the care and medical staff realise that he was as bad as he was. We pleaded with them not to send him home, because he lived alone and we knew he was unsafe. He presented himself well and for the first day or so in hospital seemed, to those who didn't know him, to be 'ok' and quite capable. It was only when he went on a walkabout in his pyjamas, escaping the ward and wandering up a very busy main road, that the social care worker started listening to us. I found it useful in those days to document everything and wrote out every incident and concern and gave copies to anyone and everyone involved in his welfare. Perhaps that's something you could do, if you haven't already? I also sent a copy to his GP and I believe it helped put everyone in the picture, no matter what the test results said.

 

[Greenie Pie]

When my husband was diagnosed his score was 23 and although he had many quite good times there was no way he would have been able to live alone.

Has the psychiatric nurse considered whether or not your mother might be fine during the good times but at risk during the not so good times.

I have always believed people who live alone need 24 hour residential care well before those who live with family or a partner.

This does not mean you should feel bound to keep up with the arrangement to have your mother living with you if it is affecting the well being of the family. It`s a very difficult decision to make but my rule of thumb is should the well being of one family member be considered more important than the well being of three.

Thanks also for the comment 3 vs 1 it made me think especially tonight as my son will not eat dinner at table because of rows/ tension. I grew up in a house like that for a different reason but no way would I ever want that for son's childhood.
I think he realises there are fluctuations but the severity I am not sure anyone realises . I have actually videoed the extremes but as yet not really shown anyone as just seems a bit weird.
We have psychiatrist first visit tomorrow so I may ask exactly how variable are things. Today she is fully mobile using washing machine etc interspersed with several accusations of me stealing things turning off the power etc etc . Very odd sane and able in many ways but completely unpredictable and random in others . Cheers g

 

[Moose1966]

Hi, my mum had a spell of anxiety and confusion last summer , then a fall down her stairs which resulted in a spell in hospital, pneumonia UTI's etc, after being discharged to rehab and then onto a psychiatric unit , she was diagnosed with AZ . We tried to have her home for six weeks in late December but it was too much for us all. She had terrible paranoia and has lost use in her shoulder following fall down stairs, she went into care home in February. She has not settled and hates it but to add to my guilt her memory is excellent so she is able to have very normal conversations with me and remember things we have discussed 48hours ago , to my mind she isn't typical AZ but I've been told by the mental health team that she does . She is currently so good it feels wrong to have her in care infact her memory is better than mine she's 84 and I'm 51 !!, I understand where you are coming from and I know that this is a good period, she will suddenly in the middle of a good chat throw in some random comment. We us a family have come to the conclusion that she is losing her ability to think logically. I'm sure she is in the right place but like you say when they're good you wonder if they are coming back to you .

 

[SnowWhite]

My mum was diagnosed with Alzheimer's last autumn at 92. I am still learning a lot and I am very surprised at fluctuation in her health.

Some days she is quite like her old cheerful self and we have a laugh. Other days she's very low and hates her care home and everybody in it. I take her out and she's like a different person. Her handwriting has deteriorated dreadfully and she's very aware of that. She is now very bad at remembering who people are but she's OK with her immediate family. We only have fairly brief conversations now as she loses the thread.

She's never been nasty to any of her family but staff at her home tell me she can be quite rude to them and awkward but I think a lot of that is because she's lost her independence and is bored much of the time.

She has forgotten how to handle money and also what day it is so I write everything in her diary.

Aside from her Alzheimer's her mobility is deteriorating rapidly.
I know things could be a whole lot worse so we just take each day at a time.

 

[philamillan]

Hi Greenie Pie.

Just had a thought.

Are those fluctuations in any way related to her dialysis?

Is there any pattern to the increased confusion? Could it be just before or after the dialysis?

That degree of fluctuation seems to suggest that it could be something else other than the dementia.

Maybe even her medication?

Interesting to note what and when it happens to her.

 

[Greenie Pie]

Hi Greenie Pie.

Just had a thought.

Are those fluctuations in any way related to her dialysis?

Is there any pattern to the increased confusion? Could it be just before or after the dialysis?

That degree of fluctuation seems to suggest that it could be something else other than the dementia.

Maybe even her medication?

Interesting to note what and when it happens to her.

Thanks - yes they are indeed worse on dialysis days - this can be from the tiredness associated with dialysis and also a phenomenon where the brain swell to compensate for fluid loss that rapidly happens in dialysis . We started having carers on those afternoons to break the cycle of the extreme confusion on those days - this was suggested by the cpn . It has worked .

What is happening at the moment is bizarre though physically she is suddenly very able and cognitively at least superficially on the ball . She has however today accused me of stealing a variety of things , disconnecting the power supply to the washing machine, conspiring with my son against her and the list goes on, she has no idea what day it is and if i say its Sunday she thinks i am tricking her . She is basically furious the whole time as she believes everyone is talking about her or tricking her . The sensation i appreciate is real to her but unfortunately so is the anger to us !!! . So together in some ways on the ball but not in others ....

I am not convinced its just dementia or even dementia- although if this is even suggested that she hasn't got dementia she will be even worse and there will be no stopping her .

The dialysis situation does complicate things hugely - but dementia ad dialysis do appear to be linked as high blood results and vascular damage etc so there may be other people here who have some experience .

I have looked at the blog many time but this firs time written anything kind of a relief to just write the chaos that's going on ....
Cheers G

 

[Greenie Pie]

I'm no expert, but from what I have read, fluctuations and hallucinations are more typical with Lewy Body dementia.

It is nice for professionals to help maintain a positive outlook for our loved ones, but in this case the nurse has done you no favours at all. It must be so hard when they feel that there is nothing wrong. It's bad enough for me when my wife get cocky about her performance and I can still reason with her to make her realise that she needs to be careful. I am not looking forward to the time when this no longer works.

All the best.

Thanks - yes we are not having any reasoning which isa big problem. Long may your wife keep hers . Just very difficult . Thanks G

 

[Greenie Pie]

Hi, my mum had a spell of anxiety and confusion last summer , then a fall down her stairs which resulted in a spell in hospital, pneumonia UTI's etc, after being discharged to rehab and then onto a psychiatric unit , she was diagnosed with AZ . We tried to have her home for six weeks in late December but it was too much for us all. She had terrible paranoia and has lost use in her shoulder following fall down stairs, she went into care home in February. She has not settled and hates it but to add to my guilt her memory is excellent so she is able to have very normal conversations with me and remember things we have discussed 48hours ago , to my mind she isn't typical AZ but I've been told by the mental health team that she does . She is currently so good it feels wrong to have her in care infact her memory is better than mine she's 84 and I'm 51 !!, I understand where you are coming from and I know that this is a good period, she will suddenly in the middle of a good chat throw in some random comment. We us a family have come to the conclusion that she is losing her ability to think logically. I'm sure she is in the right place but like you say when they're good you wonder if they are coming back to you .

Thanks very hard if you not sure about the care home when you can see the old person . On some days this happens and there is overwhelming sadness . But this latest bout of activity is just mania and venom mixed and it is truely unpleasant ! It would appear that these dementia has so many different manifestations ! all the Best

 

[Greenie Pie]

I can relate to this. My dad was also diagnosed with sub cortical vascular dementia, and had/has highs and lows. He'll have a 'dip' and period of confusion followed by a more stable period of relatively good lucidity.

Generally though, the overall pattern is one of decline. Dad is now at the stage of very slurred speech and shuffling walk, unsteadiness when standing etc. Yet just last week he told me he was going to buy a 'push bike'! Sadly he did eventually suffer a fall, which resulting in long term care.

While he was still at home (on his own) he had hallucinations, mostly auditory. And paranoia, which is still there; he thinks people pinch his tissues, move clothes around, sneak into his room at night and so on.

Yet other times he talks very logically about his finances (always was good at maths!), or current affairs.

It's very odd, and frustrating for all of us, but as a family we've learned to accept it. Except dad of course. Who still wonders if his driving license is valid so that one day he'll get back behind the wheel...

Have edited to add: when dad fell and was hospitalised it was the devil's own job for us to make the care and medical staff realise that he was as bad as he was. We pleaded with them not to send him home, because he lived alone and we knew he was unsafe. He presented himself well and for the first day or so in hospital seemed, to those who didn't know him, to be 'ok' and quite capable. It was only when he went on a walkabout in his pyjamas, escaping the ward and wandering up a very busy main road, that the social care worker started listening to us. I found it useful in those days to document everything and wrote out every incident and concern and gave copies to anyone and everyone involved in his welfare. Perhaps that's something you could do, if you haven't already? I also sent a copy to his GP and I believe it helped put everyone in the picture, no matter what the test results said.

Thanks very similar sub cortical VD is what they said for my mum too . She is also threatening to get a car . Thank fully she has no chance or organising this so this along with many other adventurous idea go by the way as the organising wont happen.
Yes have written down stuff but tbh i lose the momentum to keep it up . I feel she takes so much time as it is that dedicating time to write down after son to bed and other stuff done and work is hard - But i thin you are right I should go back to this .
cheers G