Please can somebody explain

daisydi

Registered User
Feb 25, 2015
255
0
Norfolk
Does anybody know why some days a person with dementia can be lucid and fairly normal and then the next day be completely phased out, not bothered about anything, anxious and defensive. I understand the disease affects and wipes out parts of the brain but what I dont understand is why some days it is not so bad and then other days it is awful. If some parts of the brain are dead why do they revive themselves on occasions? I just can't get my head around this disease or is that the nature of it?
 

Kevinl

Registered User
Aug 24, 2013
6,298
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Salford
Same way they can "up there game" when they're at the doctors, social workers or around other people, you just wonder why can't you be like this all the time?
It would be interesting to know how some days or certain situations so much can come back only to disappear the next day.
It's not like it "wipes out parts of the brain" it just stops it kicking in unless there is some special event occurring then in switches back on (at a reduced level).
K
 

JayGun

Registered User
Jun 24, 2013
291
0
Does anybody know why some days a person with dementia can be lucid and fairly normal and then the next day be completely phased out, not bothered about anything, anxious and defensive. I understand the disease affects and wipes out parts of the brain but what I dont understand is why some days it is not so bad and then other days it is awful. If some parts of the brain are dead why do they revive themselves on occasions? I just can't get my head around this disease or is that the nature of it?

The way I think about it with my MIL in law is that when she's calm and feeling ok she has the mental resources to make the effort and try - but if she hasn't slept well, or she's stressed, or in pain etc, that takes up too much brain space for her to be able to keep it together.

I can even tell when she needs a wee badly now, because even that puts her off her game too.
 

daisydi

Registered User
Feb 25, 2015
255
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Norfolk
The way I think about it with my MIL in law is that when she's calm and feeling ok she has the mental resources to make the effort and try - but if she hasn't slept well, or she's stressed, or in pain etc, that takes up too much brain space for her to be able to keep it together.

I can even tell when she needs a wee badly now, because even that puts her off her game too.

I often see my mum after lunch and sometimes she is just so restless and wandering. Regularly she needs the loo but doesn't remember how to do it, where to go etc which maybe is why she is restless in the first place. Oh this is so horrible ...
 

daisydi

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Feb 25, 2015
255
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Norfolk
With my Mum there seems to be a defense mechanism which can kick in when others are around, when she is trying to keep up appearance of still being in control of her life poor Mum. It all breaks down when someone just goes over that invisible line and gives a little bit too much 'help' for her liking. This makes her angry and stressed, she just doesn't understand why they are helping and how she got into the CH and we go through all the recurring loops again and again. It is hard to know sometimes if it is forgetfulness or denial. Probably both. Then a few hours later she is lovely again, remembering things well with and without prompting.It seems to me that she is watching herself loosing control of her life - knowing that is happening whilst denying it at the same time. Does this make sense? So sad and frustrating that you can't do anything to help.

Yes I've said before that it is like she is being tortured as she does know what is happening but cant do anything about it. I just cannot get my head around it and how absolutely devastating it is
 

JayGun

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Jun 24, 2013
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0
I often see my mum after lunch and sometimes she is just so restless and wandering. Regularly she needs the loo but doesn't remember how to do it, where to go etc which maybe is why she is restless in the first place. Oh this is so horrible ...

Quite possibly. When I think MIL needs to go, I try cueing her and leading by example by saying how desperate I am for the loo after all that tea we've been drinking and then going to the loo myself, but if she doesn't copy me I suggest that she goes, or come put of the loo and say" all done, your turn." as if maybe we'd both said that we needed to go.

It may well be that the restlessness you observe is a sign of needing a wee, or it might be a bit of boredom, or perhaps a little of that feeling that you are supposed to be doing something but you. can't t remember what it is. After a while patterns emerge and you'll recognise what's happening.
 

Linbrusco

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Mar 4, 2013
1,694
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Auckland...... New Zealand
My Mum has Alzheimers and my husband has had had two brain surgeries, chemo and radiation for a brain tumour 11 yrs ago.
The brain ( or part of) is diseased, damaged or atrophied but not entirely dead.
Brain cells and brain activity, cause the symptoms and behaviour to fluctuate, as does medication, sleep deprivation, infections and even stress/anxiety.

My husband has been on anti seizure meds for 11 yrs.
In those 11 yrs, he had a period over a year where he was severely stressed, due to unable to perform his job and deciding whether to retire on medical grounds.
As a result he suffered partial seizures, where he could not speak for 5-10 mins at a time. His tumour was right on his speech area.
4 yrs ago after coming down with a urinary infection he suffered a massive seizure and hospitalised.
His Neurologist said even this far down the track, once a brain has become damaged whether by surgery, accident or disease the brain is unpredictable.
My husband also has good days and bad days.
 

daisydi

Registered User
Feb 25, 2015
255
0
Norfolk
My Mum has Alzheimers and my husband has had had two brain surgeries, chemo and radiation for a brain tumour 11 yrs ago.
The brain ( or part of) is diseased, damaged or atrophied but not entirely dead.
Brain cells and brain activity, cause the symptoms and behaviour to fluctuate, as does medication, sleep deprivation, infections and even stress/anxiety.

My husband has been on anti seizure meds for 11 yrs.
In those 11 yrs, he had a period over a year where he was severely stressed, due to unable to perform his job and deciding whether to retire on medical grounds.
As a result he suffered partial seizures, where he could not speak for 5-10 mins at a time. His tumour was right on his speech area.
4 yrs ago after coming down with a urinary infection he suffered a massive seizure and hospitalised.
His Neurologist said even this far down the track, once a brain has become damaged whether by surgery, accident or disease the brain is unpredictable.
My husband also has good days and bad days.

Yes thank you. Unpredictable! I'm afraid I have one of those minds that needs to understand and I just cannot.
 

Kevinl

Registered User
Aug 24, 2013
6,298
0
Salford
Yes thank you. Unpredictable! I'm afraid I have one of those minds that needs to understand and I just cannot.

It must be like drinking half a bottle of gin then trying to act normally when the police pull you over in your car (not that it's ever happened to me). You know how to act normally and sober and you try to but your brain is too foggy to cope, you can try and snap yourself out of it but your brain really can't handle it. Bit rubbish but that's about as close as I can guess.
How can you know what's happening inside the mind of a drunk or someone on drugs?
They just re-wire your brain while you're under the influence of them, look in most city centres and you'll see people in their 20's; being incontinent, sexually inappropriate behaviour, irrational, violent, forgotten their own address... who does that remind you of?
I guess if you want to find out a couple of Bacardi Breezers, 7 WKD's and a few shots might give you a clue.
K
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
You've raised an issue that must occur at times to many of us daisy.

Much of what we are told about what happens to the brain may not be as accurate as it sounds. Sometimes it's almost like metaphor. It's common to hear about parts of the brain being 'wiped out' or 'dead' but what does that actually mean? Probably, in many cases, that area isn't actually dead, completely non-functioning, extinct. It may be practically useless at some times and a bit better at others (like other parts of the body we could think of). Or more than one 'part of the brain' may be involved in particular activities and some of the parts may be working better. Or the person's mood may affect the way even the 'damaged' part of their brain works - for good or ill. We might say to each other (particularly to kids) 'use your brain'. Perhaps for some PWD, at some points, it's still possible, by focussing, to make better use of what they've still got.

Professionals sometimes use pretty basic ideas to try and explain to us lesser mortals what is going on, but most things about the brain are still too complex even for them to understand, never mind properly explain.

I don't know if this helps you but it sometimes helps me.
 

Grey Lad

Registered User
Sep 12, 2014
5,736
0
North East Lincs
You've raised an issue that must occur at times to many of us daisy.

Much of what we are told about what happens to the brain may not be as accurate as it sounds. Sometimes it's almost like metaphor. It's common to hear about parts of the brain being 'wiped out' or 'dead' but what does that actually mean? Probably, in many cases, that area isn't actually dead, completely non-functioning, extinct. It may be practically useless at some times and a bit better at others (like other parts of the body we could think of). Or more than one 'part of the brain' may be involved in particular activities and some of the parts may be working better. Or the person's mood may affect the way even the 'damaged' part of their brain works - for good or ill. We might say to each other (particularly to kids) 'use your brain'. Perhaps for some PWD, at some points, it's still possible, by focussing, to make better use of what they've still got.

Professionals sometimes use pretty basic ideas to try and explain to us lesser mortals what is going on, but most things about the brain are still too complex even for them to understand, never mind properly explain.

I don't know if this helps you but it sometimes helps me.

Thanks Stanley you have certainly helped me with this post. G L
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
I think most of the brain is not dead but is inaccessible to it's owner most of the time. Occasionally it 'floats to the surface' and you have a completely different person - the old person, the person you fell in love with. OH has this fleeting normality as well and I've never been to be able to fathom a reason why 'normality' has reappeared.
 

1954

Registered User
Jan 3, 2013
3,835
0
Sidcup
Same way they can "up there game" when they're at the doctors, social workers or around other people, you just wonder why can't you be like this all the time?
It would be interesting to know how some days or certain situations so much can come back only to disappear the next day.
It's not like it "wipes out parts of the brain" it just stops it kicking in unless there is some special event occurring then in switches back on (at a reduced level).
K

Oh boy mil does my head in when she does that as it makes me look like a liar re her dementia !!!!
 

stanleypj

Registered User
Dec 8, 2011
10,712
0
North West
I can understand how frustrating this must be and it's obviously an experience shared by many members. People sometimes write to the professionals concerned with specific examples of the behaviour that makes life so difficult for then and their carers.

But perhaps the positive way of trying to look at it is that the PWD is sometimes capable of relative 'normality'. I struggle to see how that can be ultimately seen as anything other than a good thing.
 

Miss shiraz

Registered User
Dec 24, 2014
79
0
Midlands
1954 - def agree with you here. Also mil tells people things that i think she actually believes eg i do all my own cooking, cleaning gardening, when we know the reality.
interesting about likening dementia to drinking... i can relate to that. MIL's behaviours used to deteriorate further after drinking a third of a bottle of gin (nearly neat except for a splash of orange squash -yuk!), so we had a put a stop to that; she's on the sherry these days, slightly less potent!! :D :eek:
 

jaymor

Registered User
Jul 14, 2006
15,604
0
South Staffordshire
My husband was so depressed, tormented and anxious when he started to loose his skills. He was aware that he was loosing them. Once his memory was of times further back then the depression lifted and as far as he was concerned he had the skills, the time of them disappearing had passed.

Of course this brought up more problems because he was adamant he could do a job and would not allow workmen in, hence a big deteriation in the house until he went into nursing care.
 

daisydi

Registered User
Feb 25, 2015
255
0
Norfolk
Thanks to everyone for your input. It's good to read different perspectives and comforting to know that I am not alone in trying to deal with this
 

Tin

Registered User
May 18, 2014
4,820
0
UK
I can understand how frustrating this must be and it's obviously an experience shared by many members. People sometimes write to the professionals concerned with specific examples of the behaviour that makes life so difficult for then and their carers.

But perhaps the positive way of trying to look at it is that the PWD is sometimes capable of relative 'normality'. I struggle to see how that can be ultimately seen as anything other than a good thing.

This is how I feel when I see my mum trying so hard to 'fit in' with other people and conversations. I am just pleased there is something there pushing her. I used to say that my mum was like a little girl playing at being a grown up but not any more, she is a grown up and still trying to do her best with what little she has, as confusing and upsetting as it is for me, she keeps trying.
 

patsy56

Registered User
Jan 14, 2015
837
0
Fife Scotland
Oh boy mil does my head in when she does that as it makes me look like a liar re her dementia !!!!

Oh yes there is the real demented mother and the one that appears from the cupboard to be nice to social workers, doctors and community nurses, then it goes back into the cupboard and out comes the demented woman again.