1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Is that it? The past no so much forgotten as re-remembered in this vile, toxic form?

Discussion in 'I care for a person with dementia' started by PhoebeAlexander, Sep 22, 2017.

  1. PhoebeAlexander

    PhoebeAlexander Registered User

    Aug 23, 2017
    10
    This is an amazing Forum. Thank goodness for you all. What I find particularly reassuring is that you have all broadly given the same advice. i.e. take a break, keep my distance, let 'em knock themselves out - at least for a time...

    Already, with a bit of perspective, I am beginning to realise that her confabulations (not sure of the exact definitions) are usually prefaced by the now dreaded words "I've been having a think and I realise now..." She then goes on to say something really quite memorable and bizarre. You're right, it is sometimes humorous. I think my favourite one to date is about our GP who she now regards with deep suspicion. She's decided he's in cahoots with the DVLA, who recently removed her licence purely on the 'evidence' that when she went to see him he was - and I quote - "sitting in a funny way"! :D

    I torture myself poring over our past relationship. I refuse to allow her to redefine the past in my mind, just because - tragically - she has done it in her own. She wasn't the best mother. I have dealt with the consequences of that and am doing my best to acquire the self-awareness which allows me to hopefully be a good parent myself. One is constantly reminded of the Philip Larkin poem. It is sad that she has not risen to the challenge of motherhood or grandmotherhood in the way I am sure she would have liked. She could have been worse but we have had the best. And the rest is silence.

    Thank you all. x
     
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,701
    Oh, John - I feel for you - we had very similar experiences! Mil had a 'thing' about ringing the police to report all sorts of wild accusations or imagined situations. Although I had contacted the police, and explained the situation, when an elderly lady rings them to tell them that she is being 'held prisoner' and is 'black and blue' from the beatings that I and her son had been giving her, however, they are obliged to come out and check it out. A few times I was making cups of tea at 2a.m. for the local bobby's - got to the stage where with a couple of them, we were on first name terms and I knew how many sugars they did or didn't take in their cuppa's. Even when she was in hospital, she managed to call the police from one of the ward phones, and report that she had been kidnapped!

    Pheobe, I am so sorry that these awful confabulations and accusations have been levelled at you, and everyone else who has posted about them here. And I take my hat off to all of you who have selflessly cared for a parent who you haven't had a good relationship with - I don't think I could have done that.

    My situation was in one way very different. Almost since we first met, my Mil and I had been such good friends, and until the dementia, she was so supportive, and kind and always there for me, my husband and our children. We had occasionally heated 'disagreements' about her spoiling her Grandchildren - but lets, face it, there are far worse faults a Mum in Law could have!

    But confabulations and delusions were (and sometimes, still are) a massive part of Mil's dementia, and they were one of the earliest symptoms. As is often the case, they were frequently paranoid, and - very hard for me to come to terms with - I was nearly always the main villain in whatever scenario her mind came up with (though her son, my OH, and even her grandchildren were also accused of some awful things on occasion). Before she came to live with us, and before the extent of the dementia was known to her friends and neighbours, over the space of about 18 months/2 years I went from being the best DIL ever, to the person who had spent her whole married life trying to 'keep Mil away from her Grandchildren', 'drive a wedge' between her and her son, and a gold diger who was determined to part Mil from her money in any way I could. She would (I later found out) come up with incredibly detailed and convincing 'reports' of things that she claimed I had said or done, going back years, to support these accusations. When a social worker was somehow able to convince Mil to accept visits from home carers, Mil told all and sundry that I had organised it, behind her back, and was doing it to try and make it look like she was going mad.

    Once she came to live with us, the delusions and paranoia increased as her dementia worsened, and I don't think that there were many things that I wasn't accused of over the next 3 years - I beat her, stole from her, tried to poison her, told lies about her, starved her, and locked her in a room with no toilet. If her bed was wet, chances were that it was because (according to Mil) I'd 'sneaked into her room in the night, and poured water over her as she slept'. I managed to intercept her dialing 999 on one occasion, when she was about to inform the police that I'd murdered a baby - a baby that simply didn't exist in the first place. It was scary at times, because these accusations were made so convincingly, and with such detail.

    But over and above everything else the delusions and confabulations were so hurtful. And they were often accompanied by her telling me how I had never been good enough for her son, how she couldn't believe that her son had married someone who 'looks like you', how she had 'never liked' me, how I'd never been able to cook and it was a wonder that my children hadn't starved to death, how I'd spent years keeping her apart from her son/grandchildren and how 'the Lord will never forgive' me. Mention a holiday that we had taken together, for example, and Mil would usually come out with some ficticious event from that holiday where I had said or done something outrageously awful to her.

    I can tell myself that this was the dementia, not Mil, till I'm blue in the face, but it really hurt and upset me at the time, and even now, I sometimes wonder how much of what she said maybe did reflect what she really thought of me for all those years, when I thought we were friends. Its tainted the memory of the relationship we once had, made me question it, and that's the worst thing for me.

    Pheobe, I was able to care for Mil in our home for 3 years because I used to have such a fabulous relationship with her, because she had (pre-dementia) treated me so well and we were close. I think that you are amazing to have have put so much effort into caring for your Mum when your relationship with her was so difficult to start with. The advice to step back and let your brother deal with it for a while is excellent - you have done as much as could possibly be expected, and you need some time to recover and heal now, hun xxx
     
  3. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    442
    i always had a difficult relationship with my mum which worsened with dementia. She used to tell everyone she met that I never visited or did anything for her even while I was there and cooking cleaning and taking her to doctors etc. She would tell them she never wanted me and I had ruined her life, and abandoned her for a career and family. She would slam the door on me, when I did get inside she would scream abuse and get really upset until I left. However my brother who has never visited or even called in over 5 years despite living in the next road was wonderful and looked after her.
    It was a relief when she stopped recognising me and thought I was the social worker!
     

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