I'm really bamboozled...

Discussion in 'I care for a person with dementia' started by Demonica66, Jun 29, 2015.

  1. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Hi everyone. I have been sitting thinking about my Mum all day. I just cannot think of any explanation for this but I know that someone here will. My Mum is in a CH with Vascular Dementia. I have noticed that she waits for cues from others who talk to her, before replying and she glosses over things that she does not remember (she cannot remember the name of her cat so calls her 'little one'). It is almost as though she knows something is wrong but covers up for this. So much so, that some people fail to acknowledge how confused she is, as she maintains 'superficial niceties'. Is this usual? I have been called by Soc-Serv asking me about my grandfather (who died 15yrs ago) as my mum convinced them that he was alive. Hospital consultants thought that my mum was on holiday up here, and still worked full-time (lecturing at 73!) I become exasperated at this. I simply do not know what is happening, as it is only with me that she asks questions which show her confusion. Any thoughts please? Thank you so much in advance.


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  2. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Sounds like your mother is highly intelligent, and probably has strong social skills as well. People who have these qualities and dementia do seem to be able to "mask" the worst of their confusion. I think it's probably down to a life-time of learned behaviour and I think it's fairly common, at least until the late stages.
     
  3. Oxy

    Oxy Registered User

    Jul 19, 2014
    957
    Well I think soc services are reading into what your mother says as they want as of course they want to hold off having to pay anything towards her care for as long as possible. I would suggest though that you attend formal meetings with soc services, just to put matters straight as they arise. If she is 73 then she is unlikely to have a living parent though this cannot be ruled out. Whilst you can still lecture at that age, it is not possible for someone with that diagnosis in a care home who has presumably been through the memory services. She clearly still has capacity but higher order decision making will not be there.hospital consultations should if possible not be alone but they have her address!!! As poster above alluded to, she is starting from a higher baseline of intelligence than most. Wish you well with what is clearly very frustrating for you.
     
  4. marionq

    marionq Registered User

    Apr 24, 2013
    5,534
    Female
    Scotland
    I agree with the above responses and often it depends on what official bodies are looking for. When my husbands wandering became a problem and reports started coming into social services about his safety they sent a SW to assess him. She said to me my husband was a "very mannered man, a gentleman" so could sustain a polite conversation but after a few questions she realised he did not know what day it was, why he was at the day centre, what his home address was etc.

    Her conclusion was that he lacked capacity even though superficially he was fine.
     
  5. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Thank you all so much for your replies. Mum is indeed, highly intelligent and also, has been very disciplined in her behaviour due to social anxiety. She was also an alcoholic with eating disorder. It's a perfect storm; as Soc Serv have really not been helpful at all. I think the SW finds her intimidating and the hospital consultant saw mum alone; despite me asking him to let me attend. I feel so guilty, as sometimes I have to ask Mum questions in front of people to prove her confusion and I feel so cruel and duplicitous, but it is sometimes the only solution. I really am grateful for your advice.


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  6. 100 miles

    100 miles Registered User

    Apr 16, 2015
    109
    I totally recognise what you say. I am not sure how far my mum needs to go back to get to 'reliable' memories, I would guess more than 50 years.

    But I was watching her talking to a total stranger while we waited for a train....and she seemed totally competent and responded appropriately in the conversation. It was amazing, you really couldn't guess that has no idea what her grandchildren's names are most of the time.

    Intelligence and decades of polite conversation gets them a long way in life.
     
  7. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Oh, absolutely! My mum too is able to convince many people (including, until recently, the warden of the sheltered housing where she lives) that she is 'fine'. I think it's partly because people see what they want to see....

    However, she cannot disguise her inability to use the phone, turn on an oven, have enough to drink, do her laundry, make a shopping list, remember her families' names, get dressed in reasonable order, clean her teeth, etc etc. In other words, it's the practical, functional things that show her true condition. Those are the things I see more than most. And social workers and nurses would get a much better picture if they asked her to do something at assessments .....

    That said, I can't help but be impressed by her conversational abilities...:) xx
     
  8. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Whilst I would wish no one to be in this position, I am so thankful that you can all understand what I am flummoxed about! Sometimes, it seems implausible that Mum has dementia at all. This darn illness is just so cruel. Thank you all so much.


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  9. Isabella41

    Isabella41 Registered User

    Feb 20, 2012
    901
    Northern Ireland
    My mum sounds exactly like your mum demonica. She is in a care home and I sometimes think the staff forget she has dementia such is her abilty to cover up. She can hold a perfectly sensible conversation but if she were left to her own devices back in her own home she would be unable to cook, clean the house or herself, manage her finances etc. Basically she cannot function. I fought a hard battle with Social Services as due to mum being so plausible I found it hard to convince them regards the true extent of mum's problems. I hate this darned illness with a passion.
     
  10. JigJog

    JigJog Registered User

    Nov 6, 2013
    241
    Hi Demonica,

    My OH is the same. He has a stock of what I call 'camouflage' statements which he uses to hide the fact that he is struggling.

    'Oh really, that's good.'

    'Well, who'd have believed it.'

    'You must be joking.'

    'Well, I never.'......... and so on.

    Mind you, he doesn't always use them in the right place. :) When the Jehovah's Witnesses come a-knocking and he uses his camouflage statements, they wonder if he is taking the mickey.

    'Jesus died so that your sins could be forgiven.'
    'Well, who'd have believed it.'

    He also repeats the last few words of what someone says to him.

    'Are you going to cut the grass on Friday?'

    'Cut the grass on Friday?

    It helps him feel as if he's getting by and he does with some folks. He maintains his dignity and self respect. I think it's quite common.
     
  11. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,856
    England
    Who indeed! Love it. :D:D P.S. I do (but I am not a JW).
     
  12. Oxy

    Oxy Registered User

    Jul 19, 2014
    957
    Thank you Jigjog for sharing. I really laughed with the response to the JW.
     
  13. JigJog

    JigJog Registered User

    Nov 6, 2013
    241
    :D
    In fact, now I think about it, the JWs haven't been for a while........

    I wonder why..... :)
    JJ xx
     
  14. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    Mater does that, but sometimes I think it is her way of trying to remember, not that she does cut the grass, the gardeners do.
     
  15. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    My mum was a master at the cover up and charmed many a doctor for quiteca long time. Who are we to judge really as its a way of coping and holding on. Doctors should be able to see through it but seem to lack understaning od dementia. My mums in a care home and most days you would forget she has dementia. Then she says whatca nice hotel it is and her parents are coming later. She is 82!
     
  16. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    This forum really has cheered me up. Mum definitely has 'stock answers' which she uses to effect most of the time. She nearly got caught out today however, when she told the carer that she was 'far nicer than the chubby lady that had brought her an ice-cream' - me! This forum is definitely having a good effect on me: 6 months ago, that would have upset me. Now, it just makes me smile!


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  17. JigJog

    JigJog Registered User

    Nov 6, 2013
    241
    It made me smile too! :)

    It's good to hear that the forum is having a good effect on you. I feel really lucky to have the support of such an amazing group of people. So many different experiences, so much wisdom, so much support. I'd be struggling and feeling very alone without it.

    Thanks everyone.

    JJxxx
     
  18. Mannie

    Mannie Registered User

    Mar 13, 2014
    115
    Bracknell area
    For me this is normal behavior. For example last week while at the health centre I went into the disabled toilet to help my dad. Often he will manoeuvre with a shuffle a bit like Parkinson's and take lots of small steps instead of strides. As we exited thetoilet area, he spotted that we were entering the waiting room where people were sat facing us . In a flash he straightened up , took on a smile and lengthened hi s stride....I hid my amusement thinking how "keeping up appearances" is still a priority for him.

    I read that dementia patients keep their intelligence but lose their memory/practical skills.

    But probably you need more practical tips as well ?

    1. Visit your mum's GP and ask them to ensure that her dementia diagnosis is included in any hospital or health care referrals, and have yourself and any siblings documented as next of kin. This is a very common situation. I do recall how I found it so difficult to get started but now I am used to it. Right at the beginning I also drafted a letter and asked my parent to sign it that the GP could share his medical details with me.

    2. Call health receptionists and ensure they are aware just in case the notes are unclear. In some hospitals they use a butterfly symbol on the notes .

    3. You will need to attend every medical, cpn and social services meeting from now on, because they can't make assessments based on an interview with a dementia
    patient alone. Neither can your parent be expected to remember any treatment plans given by the doctor etc. I found that my parent soon got used to it. Luckily I also managed to get a health and welfare LPA just in time. So I introduce myself as daughter and attorney , as needed.

    4 . Suggest to visit your mums GP and request a further referral to SS due to eating problems , you need more help with this, maybe from CPN and/or from a carer visiting to help with meal times or similar. they should advise.

    They have responsibility to ensure her safety.

    Prepare a diary history of when it happened and what was the outcome. Also be prepared to outline the risks to your mum and to you as her carer, as you see them. I now have an A4 hard back notebook I write everything down , so I can refer back as needed. In the beginning I have discussed some matters with SS "while showing her to her car" .

    I hope this helps to know that you are right that you do need to take more control, and it does get easier as you get accustomed to it. That said having LPA for health and welfare and also finance is a MUST if your mum has still got capacity, again ask her does she mind if you help her organise it, and also ask her GP whether he/she thinks your mum still has sufficient mental capacity to be able to grant it.

    HTH
     
  19. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Demonica, I'm a bit late to the discussion here but am glad you have gotten some helpful advice and feedback. You can add me to the list of those with parents who are bright and verbal enough, to "cover" for a long time with the dementia.

    In fact, one of the nurses in the hospital told me that they see this all the time: higher intelligence, levels of education, and verbal abilities seem to correlate to being able to still function in certain situations, especially social or business transactions.

    My mother went into a care home in February and I am still dealing with remarks from neighbors such as: your mother seemed fine to me, why have you done this to her? Well, sure, she was "fine" because she could talk to you at the mailbox for three minutes and make appropriate remarks about the weather and your dog. How about the part where she couldn't feed, bathe, or dress herself? Or drive safely? Or take her medications? Or pay her bills? Or clean or do laundry? And how about the part where she wasn't sleeping and was consumed with anxiety 24 hours a day? But yes, other than that, she was fine, thank you, but no, I won't be moving her back home. She has DEMENTIA, people!!!

    Sorry, didn't mean to unload on your thread, but honestly, some people.

    At any rate, it's especially good to hear that this forum has allowed you to shift your perspective. That's such a difficult thing to do. I quite like your story about the ice cream!

    The support on here is amazing, and like nothing else.
     
  20. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    55
    Happy Saturday everyone! Thank you all so much for your replies. Today, my Aunt & Uncle are travelling 200 miles to see me & my mum. It is a little stressful as they have not seen her in 3 years and despite me telling them everything, I do not think they are fully accepting of my Mum's condition. The advice you have given me about being there at appointments etc, is, I know, what I need to do but it is not possible. My hubby had a stroke last year and cannot work so I have to work full-time. Unfortunately, my employer will only give last minute leave for emergencies (NHS) and I have had to spend nights in A&E with Mum then go to work for 12 hours on numerous occasions. This, unfortunately was why I had to place her in a CH. I have no siblings or family to help. Sorry if this sounds 'woe is me', I don't mean it to at all. Sometimes life throws curved-balls doesn't it? But with the support and off-loading on this forum, I am coping. I'm not taking Mum an ice-cream today though. We are going out for gelato. Well, she's having gelato- I'm having a salad...


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