1. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Hi there,

    Alzheimer's is such a curious illness, I'm such a beginner at it, but I get the impression that it only affects part of the brain. Has anyone else had the situation I find myself in...........

    My Mum's is not too advanced in that she still lives at home with my Dad who is very sick too. She does all the usual stuff like repeating herself endlessly, getting confused, angry, can't concentrate on anything. hallucinates, accuses people of stealing stuff. etc. etc. and I do the shopping for her as she gets very confused in shops etc. I worry constantly that they are going to be soon as risk of being on their own (although a carer calls twice a day for my father) and I will need to look at nursing homes.

    However.............. the house is always clean and very tidy, Mum dresses quite nicely and cooks the meals (albeit simple) quite well. I wonder if because she did all this before she became ill, is she simply "doing it in overdrive" . It's so curious, obviously I'm pleased for her, but it is in a way quite unnerving.

    Anyone else experiencing this?
     
  2. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    I was told that my mother didn't have "senile dementia" because her bathroom and house were clean and tidy and she was wearing clothes which matched and looked appropriate. This was after she'd had frightening hallucinations and she'd displayed classic Vascular Dementia symptoms.
    It would have been much better if the doctors had ben more honest with us, at that time. At least the Matron at the Nursing Home explained everything to us. It is much easier when you understand the reasons for strange behaviour.
    Kayla
     
  3. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear FiFi,

    I can identify with you very clearly. My Mum is now two years into her diagnosis, and (I believe) about 4 years down the track of dementia. She constantly repeats herself; misunderstands things and needs them explained again and again; has lost much of her ability to reason and is declining in other ways. Her mobility is very poor, for example. She cannot do her own paperwork at all, but signs the cheques for me. (I have POA but we always "do the accounts" together because it helps her feel less of a burden, and as if she still has some control over her own affairs.)

    BUT!!! She still dresses herself carefully and appropriately, right down to lipstick and beads. Her personal hygiene is still immaculate. She has lost no powers of speech and can still be quite witty. (Told me the other day she hates her new hairstyle because it makes her look like a koala - i.e. - fluffy over the ears!! She doesn't actually look like a koala, but I can see what she means about the fluffy bits! :) ) Actually her personal vanity has not decined one bit!

    She still reads books (but has trouble following story lines sometimes); still plays Scrabble (and can still beat her opponents on occassion!); still watches TV and enjoys answering quiz show questions - the list goes on!

    She gives us a shopping list each week which is always "spot on" with her needs (fruit, biscuits, milk for tea, etc.) and can still manage giving out money and change quite well.

    BUT!! She does not realise (or accept) she has dementia, despite being in a secure unit for dementia sufferers. (She is not one of those other poor "nutters", she tells me.) Her concept of time is poor. She misremembers things and these "mis-memories" become undeniable facts! She can be hopelessly confused by what are apparently simple things. She no longer makes logical conclusions. For example: I asked her about a hearing test the other day (my sister takes her to the Hearing Clinic) and she told me my sister was taking her. So I asked if my sister knew when the appointment was and Mum just said "Oh I'm sure she does - she always takes me to the Hearing Clinic." Rang my sister, who knew nothing about it.

    So I know we are a long way from being in the worst categories yet. I dread Mum's decline but I feel sad that she is still aware of her loss of her faculties (altho' this awareness is decreasing).

    People who see Mum briefly or meet her for the first time often think I'm not telling the truth about her dementia. She can put on a very "good show" for a short period, but cannot sustain it over time.

    This disease is SO confusing and SO difficult to understand, isn't it?? :(
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    My impression is that this is correct - only the part/s of the brain affected are affected in a randon fashion.

    Some people get hit harder in the speech areas, some in the 'must clean the house' area.

    Also, the type of dementia accentuates that.

    just my observations.
     
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Fifi

    My Mum is in her 6th year of AZ, she can still walk about, slowly now though, is unable to bath or dress herself, her speech is rapidly going and she has to be encouraged to eat or drink anything........................she hasn't read for at least a year and ignores the TV although she will tap her foot to music.

    But............. if there is a tiny piece of tissue or fluff on the floor she's there to pick up and no cushion is allowed to be crooked in the lounge.

    Very strange, but comforting to see a glimpse of the houseproud Mum I love.

    Kathleen
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    Hi Fifi.

    Yes, it certainly does only affect parts of the brain. The mystery is it affects different part in different people. And I suppose the other mystery depends on the form of dementia, eg. Alzheimers, VaD, FLD, Picks, Lewy Bodies, and others I may not know of.

    My husband is two years from diagnosis and at least 8 years from onset.

    On the one hand, he still dresses himself, takes clean clothes every day, selects his clothes with care, eg. has favourite shirts, but on the other hand has problems finding them, and opens and closes all the drawers, searching frantically.

    He has always watched his weight and still weighs himself every morning, but now he forgets he has eaten, and will ask what we are having , minutes after finishing a meal. [Sickeningly, he hasn`t gained weight.:rolleyes: ]

    He can discuss politics, but can`t remember we have a new PM; sport, but is unable to differentiate whether he`s watching it, live or recorded; and space exploration. But he can`t follow a bank statement and leaves post unopened.

    It is curious indeed.
     
  7. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Lots of similarities to my Mum, & lots of differences too. Dementia seems to be tailor-made to the individual person in the earlier stages doesn't it.

    :mad: Evil sodding disease. :(
     
  8. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    My Mum saw the Trooping of the Colour on TV in her Nursing Home room and then remembered every detail of a time nearly thirty years ago when she took me to see it, when I was expecting my first child. She actually remembered things I'd forgotten abput, like buying me a record of the event, which I still have.
    She would have no idea whether it was morning or afternoon and if she'd just eaten breakfast, lunch or evening meal!
    Kayla
     
  9. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Thank you

    Dear Friends,

    I can't thank you enough for your replies. It is so reassuring to know that others are in the same situation. It just seemed so strange to me and I couldn't fathom it out at all. Like Nell is experiencing, my Mum can put on a good show for strangers, but I've seen her behave like a wild animal when I've challenged anything (which I know not to do any more, since we had a "show down" over a scrabble word!).

    Thank you again, TP is so valuable to me for being able to air this sort of concern as I wouldn't have known where to go to.

    Much love to all.
     
  10. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    "my Mum can put on a good show for strangers"

    It has been commented on before on TP that suffers often "present well" which make us carers appear to be exagerating.

    Dick
     
  11. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Thank you Dick. I actually have kept an ornament that got damaged when my Mum was getting violent, it seems that I need a reminder of how bad it can get. Fortunately I have learnt now pretty much what to do (or not to do) to avoid this sort of thing happening too often.

    What a steep learning curve a lot of us are on!

    Regards
     
  12. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Fiona

    I recognise many of the symptoms you describe and yes, they are to be considered and wondered about, but while your parents are coping I think all you can do is be watchful and see how things develop. Lots of patients with Dementia cope very well in some areas and not in others. I think the time you have to make a move is when the lack of coping is becoming a nuisance or a potential danger.

    Hope this helps

    Margaret
     
  13. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Thank you Margaret for your kind reply. Yes, my brother and I are being very watchful. We are however dreading the day we do have to consider residential care because we have very fresh in our memories the time we had to stop our mum from driving her car - and all hell broke loose! It seems that all is calm when there is no break in routine but once a change happens, enough said........
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Jul 16, 2007
    Last edited: Jul 16, 2007
    I know what you mean , my mother must of been on a good level with her dementia, washing looking after herself for a good few years , before she was told she had AZ .

    I put it down to my father passing ways , the shock of it push the AZ into another stage , that all her cooking washing skills went .

    I am no expert , but from seeing my mother with AZ , my perception is that if they no stress in they life as in a calm environment , its amazing how long they can keep on washing , cleaning themselves , till they drop into another stage.

    that maybe way your mother in a shop , its all to stress full for her not a calm environment, but when she at home its calm, safe , so her mind at ease so she can remember how to cook , wash still .
     
  15. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    #15 CraigC, Jul 16, 2007
    Last edited: Jul 16, 2007
    Hi Fifi,

    I must concur that Alzheimer’s takes on many guises. In the early stages I swear that people though I was making it up when telling them about dad. “he seems alright to me", "he looks fine". In fact at dad’s new home where all residents have dementia some of the residents are still very articulate and careful about their appearance. As far as being tidy/keeping up appearances, my understanding is that the same part of the brain that is affected by Alzheimer’s is also the same area where COD (compulsive obsessive disorders) stem from. Not saying that is always the case, but there may be a connection at least with the tidying. By the way, I'm not saying that people with COD are more likely to get alzheimer's!

    So many cases are different and the decision when to move into care is different for anyone. It is not just about safety, but balancing the quality of life with safety and dignity.

    Just my humble thoughts
    Craig
     
  16. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,111
    Toronto, Canada
    A deceptive disease

    I had the same expereinces when my mother was in the earlier stages. She thought she lived in a house from 50 years ago and didn't know her parents had died. She couldn't remember what she had done yesterday but when she met friends of mine at a restaurant, they were surprised at how pulled together she appeared. That's because my mother is very intelligent and was smart enough to say as little as possible. She KNEW something was wrong with her but she determined to hide it.

    And hide it she did, very well for a very long time.

    Joanne
     
  17. fearful fiona

    fearful fiona Registered User

    Apr 19, 2007
    723
    London
    Thanks Margarita, Craig and Joanne,

    I'm so glad I started this thread because I have received so much reassurance from all the replies which have all been really helpful.
     
  18. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hey all

    Never any good at titles.

    Am relatively new to all this (4 weeks really) and it is becoming glaringly obvious to me that every person is SOOOH different. I find myself reading one person's story and thing "Pooh, that is nothing to get worked up about, you want to see my mum on this" and suddenly they describe a symptom or an action and I think "Crikey, I'm glad mum doesn't do that".

    Gang, we are all in this together. Keep the messages coming. It is two-way. One it makes you realise how other people behave and the more we can learn about behaviour the better able we are to understand the illness, and Two it keeps us in touch.

    Love you all, this is a special website and I think it should get a Knighthood.

    Margaret
     
  19. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
     
  20. maude

    maude Registered User

    Nov 18, 2006
    17
    I thought it was just me

    Hi
    Mum was diagnosed with alzheimers last year but loojking back we think it had been coming on over 3 years previously. She is now on aricept and has shown a marked improvement. It was really good to see these comments on the behaviour side as you can almost think you are just looking for things. Mum too still dresses well and is very hygenic but is verging on OCD. Since her stay in hospital where she suffered an episode she is constantly aware of dirt to the point of paranoia. I am glad to see that this is sometimes the case and that there are no set rules as to how this awful cruel disease affects people. She also has very down moods followed by highs. Thanks for the reassurance. You're all a great support
    :)
     

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