Awareness

[bjthink]

Is awareness of the condition of dementia only present in those whose dementia is mostly vascular? And is it a healthy condition?
As a psychologist, I've always found awareness is the key to change and self-help. And my mother has never been in any way aware of her mental state, which was always marginally psychotic, and featured transient psychotic episodes of the most brutal kind to those closest to her.
Now, she knows that she has lost her short-term memory completely. Her mind-state is terminally fearful, although she's such a drama queen that I tend to disregard any extremism she displays.
BUT, what I want to know from others is - did your loved one show signs of awareness of the condition, and did it help? And was the condition AD or vascular?
Her CPN, who is the doziest CPN in the history of psychiatric nursing, says that her 'awareness' may lead to depression, and if she were a different personality I might agree with him.
As it is, I find that because she knows, albeit with her usual dramatic self-pitying and paranoid persona, there are times when I (whom she hates with a vengeance) can almost reach her, and help.
I have recently given her a diary book, and have set up a notice by her front door that anyone who comes in must sign her book before they leave. This book enables her to access the date, day, and year, and see the people who have visited her, as she has the ingrained false belief that she has been abandoned by everyone.
So when she calls, serially and repeatedly, and says that no one has been to see her all day, all week, I ask her to fetch her book, and read the last entry in it. It takes a while for her to be able to do this, but she can usually manage it.
She reads it out painstakingly, by word, not by meaning, and this is a compassion issue for me, as she was a Primary school headmistress. My heart bleeds, as she says, 'But I don't remember this! Someone came today and I don't remember! I'm losing my mind!'
The 'day book' has helped me to remind her of the present. She can see via the entries in it that she has maligned those whose kindness on a daily basis helps her through, although her lifelong self-pity clicks in and asserts itself when the reading of the book is in the past by five seconds. She's again the abandoned badly-done-to waif she imagines herself to be in the stories she tells about herself, to herself
I really have no idea whether I'm helping or hindering by making these efforts to anchor her to the here and now.
What do you think?
Is awareness a good or a bad thing? And how have you dealt with it, when you've encountered it?

 

[connie]

Lionel was aware when he was diagnosed with AD. As at that time he was running the picture desk of a London publisher, it was especially hard for him to betold to - stop working and carryon as best you can.

I have always acceptepted his awareness, but lately I have begun to question same. I believe he can only accept his condition with the backup of myself and my family.

He totally accepts everything I tell him as true, even when his own 'logic' questions same. Lately I feel that this same awareness id diserting him. Indeed I know that, but for his belief inme and what I tell him, things are changing fast.

It is a sad fact that behaviou changes happen, and those nearest are often the last too see.

I can look back on three years, and am horrified at the changes. Lionel however did remark after he was diagonsed, when he was 60. that he probable had 5 good years. He would count these as his good years, as he says, he does not feel any different. Perhaps it is only me that sees him slipping away. Love, Connie

 

[Jude]

Dear BJ,

I don't personally think that trying to 'anchor' a person with dementia in our 'here and now' is going to help at all. Their reality is so far removed from ours and we have no way of knowing where they are.

My parents are pretty well in to serious 'flights of fancy' interspersed with bouts of reality and memory. Their fantasy periods are usually in the mornings and evenings upon awakening and becoming tired - and reality seems to kick in around meal times.

I don't ever try and restrain their imaginations when they are in their fantasy world. Maybe I'm wrong, but I try to get into their fantasies with them in an attempt to find out where they are.....

Jude

 

[Kriss]

I agree Jude

Occasionally when frustration has gotten the better of me I have tried to "fight" back with truth and reality. But afterwards I am left feeling guilty that I could be so cruel. In my mind it is far better to go along with the argument and just agree and sympathise.

Aunt has multi infarct dementia (similar to vascular I think) and Dad was never diagnosed with a name but his illness followed the same pattern, and it was during the periods of apparent awareness that he became most depressed. It was almost a blessing when that stage was past.

Once again though - every one is different.

Kriss

 

[Jude]

Dear Kriss,

The awareness stages are almost too much to bear. The first time my mother 'surfaced' I wasn't prepared because I didn't know at that stage that it was possible for this to happen. It lasted for about 5 minutes and just about broke my heart.

Jude

 

[emscub]

My Nan has had vascular dementia for about 10/12 years now, and has pretty much never had any awareness of her condition at all, although we've largely linked this to her personality, as she's never been over concerned with problems and illnesses. I've read in many places that those with vascular dementia often have increased awareness but it is quite clear though that my Nan has absolutely no idea that she has any problems. As jude says, I too feel it is best not to correct or argue when problems occur, as for purely practical reasons, the person with dementia is unlikely to recall your correction, whilst retaining their own view (which is also something I've always found interesting - as a form of memory that can be retained).

I'm very interested in training as a psychologist, BJ (sorry, not sure of your name!), and I'd be grateful to hear any information about your training and path towards training, as I'm aware that it's very competitive. Hope you don't mind me asking.

 

[karen_white]

My Dad has had vasular dementia for just over 6 years now. He was never aware that he had dementia, but he did know something was wrong when he couldn't do things he normally could or words couldn't be brought to mind.
We have never reminded him of whats wrong - as many here have said, what would be the point?
Now he's in a nursing home he is not aware of anything at all, let alone whether he is ill. Very frequently he gets very depressed and upset and we do think that he does have some awareness of his surroundings as the patients inthe home can be very noisy and perhaps upset as he knows something is wrong with him, but he doesn't know what.
People might think this is strange and wrong, but we try to keep Dad's spirits up by telling him that he will get better. We know he won't, but telling him he'll get better seems to calm him down. We know we're lying to him, but that's how we find it best to handle Dad, and it works.
Everyone needs to find the best way to deal with it.

 

[bjthink]

I'm very interested in training as a psychologist, BJ (sorry, not sure of your name!), and I'd be grateful to hear any information about your training and path towards training, as I'm aware that it's very competitive. Hope you don't mind me asking.

I've sent you a PM, Emma

 

[bjthink]

This is a section of the Society's information sheet on memory loss
http://www.alzheimers.org.uk/Caring...intaining_quality_of_life/info_memoryloss.htm

Fact and fiction
As dementia progresses, facts may become confused with imagination. It is usually best not to argue with the person. Try to put yourself in their situation and understand what they might be trying to say or what they are feeling and relate to that.

If you do have to contradict the person or correct them do so in a way that saves face and shows that you are not being critical.

Nada, this information given by the Society, assumes that any information which 'corrects' delusion, may be useless and confusing at best, and at worst, negative.
I disagree. My mother is still receptive to positive messaging, and I never relent on the positives, because part of my job as her daughter is to help her out of her lifelong negativity, if I can.
I don't think I should go along with her delusion that no one helps her, and that she is in total isolation. I believe I should reassure her that this isn't the case, and that she is surrounded by people who care, and who love her, in whatever way that makes sense.
I think that prescriptive advice, such as the above quote, has to be tempered by the gut feeling of those closest. We KNOW what is best, what helps and reassures and will do good for the person we are close to. It may be that we have to go against received wisdom, but then received wisdom is a moveable feast.
I don't correct my mother's delusions that someone gets into her home at night through the loft space to steal her dentures. Instead I've arranged for my sister to put BIG bolts on the loft trap, so that she can 'see' she is safe from the denture thief who prowls the rooftops.
I don't correct my mother's delusions that Brian, down the road, has stolen her address book, and that he wants to get into her knickers so that he can have her house. There's no point. I just tell her what a dreadful man he is and that she is quite right.
I don't even correct the vicious and cruel delusions she has about me, and which she relays to everyone. It's not a problem, and I've lived with it all my life, because her paranoid delusions are lifelong, hurtful (to me) in the extreme, but basically just the product of an idiopathic diseased mind.
What I need for her to KNOW is that people care for her, and will always care for her, no matter what she is and what she says. Her vindictive paranoid delusions are as malign to her, as they are to everyone else.
I shall continue to create mind-cues which remind her of the care she receives, as I think this is a positive reassurance. And when she finds out, as she does by reading the day book, that loving people are looking out for her, continually, although this may increase her fear about losing her memory, it reinforces the message I'm trying to give her - that she is NOT alone, and that there is (undeserved, although I never say that) love around her.
Now can the Alzheimer's Society advise me that I'm doing the 'wrong' thing? If it does, I'd argue, strongly.

 

[Kriss]

There can never be anything wrong if you're doing your best! Everyone and every situation is unique and the ones closest have got to be the ones who "know best". So long as it doesn't become an issue then a positive reminder will either have the desired effect or you skim over it and carry onto the next change of subject.

Kriss

 

[bjthink]

Thanks Kriss!
I think we're on the same wavelength!

 

[barraf]

Dear BJ

From reading your posts and the quotation from the AS fact sheet I don't think you are as far apart as you seem to imply.

You appear to be going along with the delusions when they are obviously nonsence, and correcting apparently gently, when you feel there is a point that can be made and absorbed. Which to me seems to be what the fact sheet says anyway.

In the end only the carer can decide what to do in each individual situation, and if they are doing their best that is all anyone can ask.

That is the way I work in any case, rightly or wrongly.

Barraf

 

[bjthink]

Dear BJ

From reading your posts and the quotation from the AS fact sheet I don't think you are as far apart as you seem to imply.

You appear to be going along with the delusions when they are obviously nonsence, and correcting apparently gently, when you feel there is a point that can be made and absorbed. Which to me seems to be what the fact sheet says anyway.

In the end only the carer can decide what to do in each individual situation, and if they are doing their best that is all anyone can ask.

That is the way I work in any case, rightly or wrongly.

Barraf

Thanks Barraf, me too!

 

[connie]

Dear bj, we can only ever do what our heart tells us is right.

Have readall the books, attended lectures (got the tee shirt), but where my dear Lionel is concerned I really do know and understand him best.

Keep up the good work, love Connie

 

[Jude]

Dear BJ,

Memory aids for AD sufferers, such as diaries and daily calender boards can be very useful to help jog forgetfulness. However, the secret is to maintain the sufferer's confidence without pressure, with a gentle approach rather than a rigid routine of the sufferer being expected to consult the daily information to see what she has missed. Forcing her to do so may well exacerbate her anxiety tremendously.

I am rather surprised by your comment about your mother when you say, 'she can see via the entries that she has maligned those whose kindness on a daily basis helps her through'. If she is maligning anyone, then surely it is the dementia doing so, not your mother consciously doing so?

Since you also acknowledge that her memory 'is in the past by 5 seconds....' then I feel it may be unrealistic and not a little cruel to expect her to closely monitor a diary for this purpose and quote it verbatim during a telephone call.

A better course of action might be to sit down during your visits and go through the diary and gently point out that she is having lots of visitors who care about her.

Just a thought which may help.

Jude

 

[bjthink]

Dear BJ,



I am rather surprised by your comment about your mother when you say, 'she can see via the entries that she has maligned those whose kindness on a daily basis helps her through'. If she is maligning anyone, then surely it is the dementia doing so, not your mother consciously doing so?



Jude

No, Jude. This is part of her lifelong mindset, and she has always been consciously malignant towards others - except the latest man!
This is one of the reasons I feel so isolated in trying to deal with her dementia. Most of the advice available assumes that the person with dementia was always lovely until the disease took over. But dementia is indiscriminate and can also hit those who have always been nasty/damaged/toxic people.
Fortunately, I know a couple of other people who've had the problem I have, and I turn to them when it gets really tough.
I think we don't hear much about people like me, as most in my position would walk away from it completely.

 

[bjthink]

Ps

I should also add that her diagnosis of dementia was made two and a half years ago, without any input from the family. When the psychiatrist got round to asking me about her life and medical history, nine months ago, he was a bit taken aback, as many of her symptoms which they'd attributed to dementia had been there all her life - memory impairment (which my 'sister', sadly, suffers from, too), confabulation (from a child she made up and spread evil stories about her mother), aggression, rapid mood swings, abusive behaviour, grandiosity, inappropriate sexual behaviour, compulsions and obsessions, false beliefs, poor impulse control, delusions and paranoia.
Although her medical records show lifelong mental health problems (one doctor wrote on her notes in 1969 in red pen and underlined, 'Arrogant hysteric totally lacking insight. Almost untreatable' she was never diagnosed or helped, which might have helped prevent her hurting her children.
I can actually 'see' where her symptomology is dementia (for which I have genuine compassion), and where it's just same old same old (which terrifies the life out of me), but it's too late now for her to find the help she always needed.

 

[storm]

Dear BJ, I agree with jude on this one you cant treat a person with A/D and hold all the things they did in the past against them, they are ill now thats what A/D is a illness. I am speaking from experiance i care 24/7 for my mother in law who lives with us i always swore she would never live with us because over the 30yrs of my marriage she was often very nasty and hurtful once before we were married she chased me down the street and told me to keep away from her son! Having said all that we have grown very close over the last few years and she hasnt got a clue that once she didnt like me at all.I bear no grudges she is ill and a differant person now.storm

 

[bjthink]

Dear Storm, I think you may have posted before reading my PS!
What I'm saying is that my mother has always been 'ill' (now finally diagnosed in retrospect by her psychiatrist as psychosis/psychotic episodes).
I live in hope that the dementia, which believe me isn't half as cruel as her other 'illness', may give her some calm and quiet eventually, at this very late stage in her life, and that she may some day like me, or at least not want to hurt me any more.
xx

 

[storm]

Dear bj, I hope this happens for your mum and you my mum in law is a lot nicer person and she is returning the love we give her which she as never done before its such a shame that it took A/D to bring about this change maybe it broke down some emotional barriers she had who knows.storm