Hi all and may the New Year be good to you
Sorry, this’ll be a long post.
I'd really appreciate TP posters' input to help me understand Mum’s changed state and explain it properly to Mum's psychiatrist and GP.
I think Mum’s state is now markedly different from what it has been and that there could be “something else” involved (eg paranoia?), in addition to her dementia (AD & VD), ordinary sundowning and continuing grieving over the death of her sister.
It’s difficult to identify what the “something else” is. If I can’t explain it to myself, I won’t be able to explain it clearly to hard-pressed medical professionals. Also, I’ve only an opinion to put forward (the “something else” might be simply another big step along the dementia path). I don’t want Mum (and Dad) to be stopped from getting the right kind of help because we don’t give the professionals any useful information they can work with.
Does anything in the following ring any bells with you and your experience please? If you’ve been through this kind of thing, was there anything that worked for you (medication, management technique or whatever)?
The situation …..
I stay a week with my parents when I visit. Mum's behaviour over Christmas seemed wholly different to me from what it was 5 weeks ago. Dad says these changes happened earlier than that (eg long before the snow had confined them to the house).
Mum’s physical health seems OK though her arms were jerking about enough over Christmas to be noticeable (her blood pressure’s well controlled but she’s had at least one TIA) so the VD might be getting worse.
In November, Mum had very little memory, forgot who family members were from time to time, confabulated fairly freely but the stories remained stable for a short while, behaved nastily on occasions only, was emotionally very fragile ... but was still mostly in the real world, engaging with real people and retaining a three-dimensional personality.
This visit, Mum was living virtually all the time in a constantly changing, unreal, self-centred world where her confabulations changed sentence by sentence without her being at all aware of the inconsistencies. As an example:- in less than 2 sentences, her grandfather had a group of lions doing tricks for him, then they became tigers, then they became lions and tigers. She’d largely stopped being herself from the early afternoon onwards, it was like listening to a talking machine that you couldn’t connect with.
I'm guessing the confabulations are both a symptom of Mum's retreat from reality and an inducement to abandon reality faster than her medical condition dictates (it's so much more rewarding to be in a world where you stroke lions or are queen of the dance floor...).
Many of the unrealities have to do with Mum being the centre of social attention and admiration - particularly male admiration - and being successful enough to take other women's men (the phrase reflects how Mum thinks).
The above suggests to me that Mum's self-esteem is at rock bottom and she's not at all sure she can hold onto her own man (she's too ill to recognise the love and care she gets from Dad but probably is subconsciously aware of his growing despair). Mum’s also worried about losing her role, I think – on one occasion, in a “making the point” kind of way, she sat in the chair I normally occupy instead of in her own chair next to Dad and on another she got out the vaccuum cleaner and hoovered (something she’s not done for a long while). Mum fears being left on her own and follows us all about very, very closely. She’s also very appreciative of positive comments about herself and her achievements (Mum doesn’t get enough of these but exhausted carers don’t always remember to pay compliments).
There is now a sustained general nastiness about Mum's perceptions of other people that’s most unlike her previous self. She now "knows" my sister is involved with a stream of unsuitable men, all of whom are taking advantage of her. She "knows" Dad [who isn't my "real Dad" for much of the time] and I are having a relationship (though she loves me so she just wants me to think about whether the relationship will make me happy!!!!!). She "knows" people are always out to steal from others - and from her – whatever they can (this explains why so much in the house gets misplaced or goes missing). She "knows" we are constantly telling her things which aren't true (eg that we're deliberately lying about not being able to see the things and people she sees).
What makes life really unbearable for Dad are Mum's obsessions, aggressive "flips", her anxiety and collapses into heart-rending grief.
As you'd expect, mornings are good times when Mum is most herself. It’s lovely watching her and Dad on a walk together, holding hands. There is also some real contact during our conversations. Afternoons used to be good but are now more dicey (you tread on eggshells trying to avoid confrontations - sometimes you succeed).
Night-times are often terribly distressing for all parties. Mum has physically attacked Dad on a number of occasions (I think she may be developing a habitual response where she expresses her anger and frustration by lashing out) but her fury and fear are mostly expressed verbally. I have asked Dad to talk to her GP and psychiatrist about this but he probably won’t.
There were many occasions over Christmas when we'd be sitting together peacefully and companionably as a family, talking about nothing in particular or listening to the radio, when out of the blue Mum would hurl an accusation or demand at Dad with real venom (eg "You're not my husband!", "Put that off, you'll wake my parents [asleep upstairs]","There ARE people here [imagined strangers]","You did go out last night, don't lie").
Mum is equally likely to be in floods of tears about re-experienced very old and less old bereavements, being alone and homeless with no money and no job, me persisting in my foolishnesses and not taking her advice, etc. Hugs and cuddles don’t help a great deal.
Dad says there's often a sequence of increasing agitation - Mum starts by talking about her parents as alive and present, goes looking for them in all the rooms of the house and becomes very distressed and angry when she doesn’t find them, then says Dad isn't her husband, then insists he takes her "home" / back to work and then may storm out of the house and / or ring each of the family members to get their help. When she storms out, Dad goes with her (putting himself at risk because he can't see in the dark);once Mum has lost her way, he has so far been able to encourage a return home. I think Mum also gets exhausted because of the intense emotional trauma she puts herself through and by the lack of sleep (she can be wandering around until 2.00am or so if she becomes agitated and Dad can’t find a way of getting the lorazepan into her).
We're wondering whether there's some reason to do with her medication or anything else why Mum so frequently "kicks off" within a few minutes of 7.30pm, when she earlier on "kicked off" at 8.45pm. Even more importantly, we wonder whether any changes in medication or our approach to medication would be likely to improve things (eg maybe a much smaller daily dosage of the lorazepan that’s now provided as a dose for emergencies?).
Mum's current medication is as follows:-
MORNING TABLETS
1 Venlafaxine 37.5 mg
(plus 1 Calcium Carbonate 1.25 mg as osteoporosis preventative)
EVENING TABLETS
1 Venlafaxine 75 mg
1 Aricept 5 mg
1 Amladipine (5 mg?)
1 Ramipril 1.5 mg
(plus 1 Calcium Carbonate 1.25 mg as osteoporosis preventative)
SUNDAYS ONLY
1 Alendronic Acid 70 mg
DURING TIMES OF SEVERE AGITATION
A half tablet of Lorazepan 1 mg)
Mum currently attends an AS day centre once a week and will soon have a home visitor for 2 – 3 hours a week. Dad being willing to accept any help with caring is a new and very welcome development.
We’re confused and struggling. Any ideas or suggestions you can offer to help us understand / evaluate what’s happening would be so welcome.
Sorry, this’ll be a long post.
I'd really appreciate TP posters' input to help me understand Mum’s changed state and explain it properly to Mum's psychiatrist and GP.
I think Mum’s state is now markedly different from what it has been and that there could be “something else” involved (eg paranoia?), in addition to her dementia (AD & VD), ordinary sundowning and continuing grieving over the death of her sister.
It’s difficult to identify what the “something else” is. If I can’t explain it to myself, I won’t be able to explain it clearly to hard-pressed medical professionals. Also, I’ve only an opinion to put forward (the “something else” might be simply another big step along the dementia path). I don’t want Mum (and Dad) to be stopped from getting the right kind of help because we don’t give the professionals any useful information they can work with.
Does anything in the following ring any bells with you and your experience please? If you’ve been through this kind of thing, was there anything that worked for you (medication, management technique or whatever)?
The situation …..
I stay a week with my parents when I visit. Mum's behaviour over Christmas seemed wholly different to me from what it was 5 weeks ago. Dad says these changes happened earlier than that (eg long before the snow had confined them to the house).
Mum’s physical health seems OK though her arms were jerking about enough over Christmas to be noticeable (her blood pressure’s well controlled but she’s had at least one TIA) so the VD might be getting worse.
In November, Mum had very little memory, forgot who family members were from time to time, confabulated fairly freely but the stories remained stable for a short while, behaved nastily on occasions only, was emotionally very fragile ... but was still mostly in the real world, engaging with real people and retaining a three-dimensional personality.
This visit, Mum was living virtually all the time in a constantly changing, unreal, self-centred world where her confabulations changed sentence by sentence without her being at all aware of the inconsistencies. As an example:- in less than 2 sentences, her grandfather had a group of lions doing tricks for him, then they became tigers, then they became lions and tigers. She’d largely stopped being herself from the early afternoon onwards, it was like listening to a talking machine that you couldn’t connect with.
I'm guessing the confabulations are both a symptom of Mum's retreat from reality and an inducement to abandon reality faster than her medical condition dictates (it's so much more rewarding to be in a world where you stroke lions or are queen of the dance floor...).
Many of the unrealities have to do with Mum being the centre of social attention and admiration - particularly male admiration - and being successful enough to take other women's men (the phrase reflects how Mum thinks).
The above suggests to me that Mum's self-esteem is at rock bottom and she's not at all sure she can hold onto her own man (she's too ill to recognise the love and care she gets from Dad but probably is subconsciously aware of his growing despair). Mum’s also worried about losing her role, I think – on one occasion, in a “making the point” kind of way, she sat in the chair I normally occupy instead of in her own chair next to Dad and on another she got out the vaccuum cleaner and hoovered (something she’s not done for a long while). Mum fears being left on her own and follows us all about very, very closely. She’s also very appreciative of positive comments about herself and her achievements (Mum doesn’t get enough of these but exhausted carers don’t always remember to pay compliments).
There is now a sustained general nastiness about Mum's perceptions of other people that’s most unlike her previous self. She now "knows" my sister is involved with a stream of unsuitable men, all of whom are taking advantage of her. She "knows" Dad [who isn't my "real Dad" for much of the time] and I are having a relationship (though she loves me so she just wants me to think about whether the relationship will make me happy!!!!!). She "knows" people are always out to steal from others - and from her – whatever they can (this explains why so much in the house gets misplaced or goes missing). She "knows" we are constantly telling her things which aren't true (eg that we're deliberately lying about not being able to see the things and people she sees).
What makes life really unbearable for Dad are Mum's obsessions, aggressive "flips", her anxiety and collapses into heart-rending grief.
As you'd expect, mornings are good times when Mum is most herself. It’s lovely watching her and Dad on a walk together, holding hands. There is also some real contact during our conversations. Afternoons used to be good but are now more dicey (you tread on eggshells trying to avoid confrontations - sometimes you succeed).
Night-times are often terribly distressing for all parties. Mum has physically attacked Dad on a number of occasions (I think she may be developing a habitual response where she expresses her anger and frustration by lashing out) but her fury and fear are mostly expressed verbally. I have asked Dad to talk to her GP and psychiatrist about this but he probably won’t.
There were many occasions over Christmas when we'd be sitting together peacefully and companionably as a family, talking about nothing in particular or listening to the radio, when out of the blue Mum would hurl an accusation or demand at Dad with real venom (eg "You're not my husband!", "Put that off, you'll wake my parents [asleep upstairs]","There ARE people here [imagined strangers]","You did go out last night, don't lie").
Mum is equally likely to be in floods of tears about re-experienced very old and less old bereavements, being alone and homeless with no money and no job, me persisting in my foolishnesses and not taking her advice, etc. Hugs and cuddles don’t help a great deal.
Dad says there's often a sequence of increasing agitation - Mum starts by talking about her parents as alive and present, goes looking for them in all the rooms of the house and becomes very distressed and angry when she doesn’t find them, then says Dad isn't her husband, then insists he takes her "home" / back to work and then may storm out of the house and / or ring each of the family members to get their help. When she storms out, Dad goes with her (putting himself at risk because he can't see in the dark);once Mum has lost her way, he has so far been able to encourage a return home. I think Mum also gets exhausted because of the intense emotional trauma she puts herself through and by the lack of sleep (she can be wandering around until 2.00am or so if she becomes agitated and Dad can’t find a way of getting the lorazepan into her).
We're wondering whether there's some reason to do with her medication or anything else why Mum so frequently "kicks off" within a few minutes of 7.30pm, when she earlier on "kicked off" at 8.45pm. Even more importantly, we wonder whether any changes in medication or our approach to medication would be likely to improve things (eg maybe a much smaller daily dosage of the lorazepan that’s now provided as a dose for emergencies?).
Mum's current medication is as follows:-
MORNING TABLETS
1 Venlafaxine 37.5 mg
(plus 1 Calcium Carbonate 1.25 mg as osteoporosis preventative)
EVENING TABLETS
1 Venlafaxine 75 mg
1 Aricept 5 mg
1 Amladipine (5 mg?)
1 Ramipril 1.5 mg
(plus 1 Calcium Carbonate 1.25 mg as osteoporosis preventative)
SUNDAYS ONLY
1 Alendronic Acid 70 mg
DURING TIMES OF SEVERE AGITATION
A half tablet of Lorazepan 1 mg)
Mum currently attends an AS day centre once a week and will soon have a home visitor for 2 – 3 hours a week. Dad being willing to accept any help with caring is a new and very welcome development.
We’re confused and struggling. Any ideas or suggestions you can offer to help us understand / evaluate what’s happening would be so welcome.
