Early stage and other People think she's OK

Discussion in 'ARCHIVE FORUM: Support discussions' started by Auntiep, May 14, 2008.

  1. Auntiep

    Auntiep Registered User

    Apr 14, 2008
    230
    Midlands
    I'm sorry if I seem to be complaining when my situation is nowhere near as bad as others on here, but I get so frustrated when people who pop in to see Mum for an hour or so tell me that she seems OK to them! They makes me feel as if I'm imagining it, or just making a fuss over nothing.

    I know she is in the early stages, and is lucky that she can do lots of things still, but I notice the many things that have deteriorated over time, and the things that she struggles with and that I have to support her with.

    She gets her medication mixed up if I don't sort it out for her, puts her clothes on backwards and sometimes forgets she hasn't taken her skirt off when she goes to bed, gets hot during the night then searches for her skirt in the morning. She can't use the remote control for the TV, forgets the words for certain items and of course repeats conversations. She's also so negative about most things, and very outspoken to the extent of being verbally abusive about people at times.

    Maybe it's just me 'looking for new signs'... I'm just totally confused by it all.

    Sorry for ranting:mad: , but has anyone else felt like this early on?

    Auntie Pxx
     
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Auntiep,
    Welcome to Talking Point.
    When my husband was in the early stages of AD (he was diagnoised age 58) people outside the family use to say exactly the same thing.
    They are not living with it 24/7.
    Can you keep a diary and write each thing that you notice i.e. good days - bad days. It is so helpful for the Professionals when they require information.
    More people will come on line.
    Best wishes
    Christine
     
  3. HelenMG

    HelenMG Registered User

    May 1, 2008
    194
    Dublin, Ireland
    Hi Auntie P,
    I understand what you are feeling. Dad is 91 and has Vascular dementia and has deteriorated a lot in the last 18 months from being able to make tea and dinner for himself, dress himself, go into town on the bus by himself to now, when he can't do any of those things at all. He can still manage to just about dress himself (sometimes two ties, shirts, vests etc :)) and now only walks around the block ( but can still fail to find his way home), but we look after his meds, meals, try to wash him, etc. and make sure there is someone around for him most of the time. He is great for 91 but not near as good as he once was. Many of his old friends and neighbours just see the smiling, well dressed man out walking who is pleased to be said hello too, or praised for how well he looks or how fit he is but I have to gently let them know that he has difficulty knowing who they are, and to watch out for him if they see him on the street. It was so hard for me to accept Dads deterioration. I made excuses as to why he was "OK really", just forgetfulness, or a bad day. It will take others much longer to pick up on the signs.

    I too felt that others were so BLIND that they could not see how bad Dad had become, but then I was blind too, initially. No one will be as aware as we are but I know that Dad does get pleasure from meeting others and chatting with them as well as he can. If they think he is great then it is a boost to him (Am I really very fit? Do I really look well? Who is that person?) .

    Its the illness we are angry with really.

    Big Hug
    Helen
     
  4. Natashalou

    Natashalou Registered User

    Mar 22, 2007
    426
    london
    It might possibly be your mum is able to give others the impression of being more "ok" than she is. My mother always did this...very confused with me but able to behave perfectly normally for an hour or so with another person.
    Even now in much later stages..there is a notable difference in her behaviour if I visit her alone than if Im with my partner(who she considers a stranger!)
    I guess she still even now retains some remnant of social skills.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,647
    Kent
    AuntieP

    Hello AuntieP :)

    It happened all the time when my husband was in the early stages, particularly within the family.

    Whenever I told my sister of an incident with my husband, she would say,
    either
    ` This has happened to me so many times.`
    or
    ` My partner is just like that.`

    It infuriated me.

    And my DIL`s mother and father visited from the Wirral. They hadn`t seen him for a while but had heard the tales. They found him `So much better than we expected. It`s hard to believe there`s anything wrong with him.`
    I wondered if they expected him to be climbing up the walls.

    Try not to take it to heart AuntieP. Put it down to ignorance. ;)

    Love xx










    I wonder if people say this to avoid having to offer help.
     
  6. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hello,

    I know that it's no comfort but I think this is fairly common.

    My husband was diagnosed 2 years ago but it was only recently that his mother and other family members actually started to believe me. They only spoke to him for short periods on the phone. Even when I pointed out that what he was telling them wasn't true you could tell they didn't believe me.

    The sad thing for me was that I have always played down what he has lost and concentrated on the positive.

    Take care
    Jackie
     
  7. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Auntiep

    Oh yes that's familiar - I still have those conversations now and believe me mum is no where like in the early stages!!:eek:

    I've never been able to work out whether they genuinely can't see it, don't want to see it or think it's more comforting to me.

    Even now my aunt (mum's sister) keeps asking my dad why he's not going to work anymore - who does she think would look after mum through the day?? Given that she has seen mum in one of her screaming episodes I'm astonished that she can't understand that she needs 24 hour care.

    I wish I had something helpful to offer but it's a mystery to me - I just smile and say nod along - I can't be bothered giving them the low down on what mum's actually like - if they're happy thinking she seems fine who am I to dispell that belief.

    My sister finds it more annoying and tends to start giving them a run down on what mum's really been up to but if they don't want to believe it they won't so for me why bother?

    It may be that your mum puts on an award winning performance when she has visitors - mum still tries to act "fine" to some extent when people are there (usually her carers and social services) although she can't really pull it off anymore.
     
  8. Auntiep

    Auntiep Registered User

    Apr 14, 2008
    230
    Midlands
    Thank You

    Thanks everyone for your replies, they have been so re-assuring. I really did think it was just me :confused:.

    Yes, I think it is definitely the disease that I'm angry with (Mum has Vascular Dementia), and maybe my friends are just trying to make me feel better? Our family are mostly oveseas, so only talk to her on the phone these days, and she hasn't been able to go to Sunday service at Church for a while.

    Mum can put on a good front, and always tells people (including the doctor) that she's OK, even when she's not - that's something she's always done even before the VaD.

    I feel a lot less alone now :)

    Blessings

    Auntie P xx
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Auntie P, it is so common. I visit mum 2-3 times a week, and 2 of the visits show no problems, but the third reminds me why she is in the care home. Relatives who visit for an hour now and again, might get her on a good day, and not realise anything is amiss.

    Don't be influenced by those who don't know what you know.

    Keep strong

    Margaret
     
  10. cathyberry

    cathyberry Registered User

    May 14, 2008
    1
    Middleton Manchester
    Re: Understand

    Hi

    just to say that we have found ourselves in the same postion. People in the family who have very little contact with Mum haven't seen the changes as we have. We have had all the same comments as you and at first its frustrating but as you come to accept things more yourself you'll be able to dismiss this a little. Remember its the people who have the most contact with the person with Alzheimers or dimentia that know their behaviour the best. Other people just operate on snapshops and often don't understand the condition even a little bit

    take care

    Cathy
     

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