1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    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.

  1. Momx4

    Momx4 Registered User

    Oct 19, 2006
    25
    My first post here so please forgive any gaps in protocol. I'm afraid this may be a long messsage because I've been unable to find anyone to really talk to, so I am rather unloading the whole picture.

    My mother is mid 80s and her difficulties have been - are being- caused by a combination of vascular and Alzheimers disease. For 5-6 years in the first phase, Mum was able to be supported in her own home by a care package, regular family visits and wonderful neighbours.

    At the start of this year, triggered by another series of TIAs, Mum's condition deteriorated markedly with hallucinations, fear, almost paranoia, of most people, places and situations caused by a failure to recognise things and short term memory loss. She finds it very difficult to process incoming speech and cannot retain written text. Unless prompted, she doesn't remember to eat or drink or has sudden cravings where she will drink or eat unpalatable things. Mum alternates between refusing to move from a space she recognises because she is afraid of outside danger and noises - and running away from that same place because she perceives danger in it. I can never predict which one of the last two will happen. She still recognises me but is getting hazy about other family members without her 'family book'.

    Mum had a spell in hospital, when her delusions were particularly bad; a week where Social services/ Mental Health Team tried a 'return to home' package with daily visits and night care but as Mom was convinced the 'danger' was waiting round the corner to come into her home, she 'escaped' from the house at every opportunity. So the Team re-admitted her to the same ward but this time for 'assessment' - and as it was a busy ward, she just sat there. Food came. If she ate any - all well and good. If not - the food went and she just pined and cried. So I decided to bring her from her neighbourhood to me and as they were keen to free a bed, it was agreed.

    This next bit is where I still feel low. Living with me failed because I couldn't help Mum cope with my household of 4 children ( now young 20-somethings) and our general coming and goings. I got cover at school, cut my work down to two mornings, arranged for care to come in and, although the kids were gentle and patient, and although everyone moved around to make Mum a quiet space, I will be honest, I couldn't make her feel any safer with me there. The wind blowing in the hedge upset her. Traffic sounds frightened her. No-one could open the kitchen door or close the fridge sharply. We couldn't have tv or music, even in the kids' rooms without it being a repeated source of anxiety and as Mum doesn't have a day/night body clock, she would wander in and out on all of us and be taken back to bed repeatedly until she fell asleep and we'd be in a pyjama'd huddle in the kitchen.

    And what I hadn't realised until then was that her anger and frustration would be directed at me or she would single a grandchild out for disliking. Until then, I'd sympathised a little or deflected her negativity about her care and hospital staff. Now I was suddenly the 'evil incarnate' and the grandchild, she had formerly loved, couldn't do anything right. I know we all deal with this at some point but I found it very hard and my natural reaction was to shield him, even though he were old enough to deal with it. I'M old enough to deal with it but it doesn't make it easier! I told myself and all my children that the person talking wasn't the Gran they knew but a distressed and frightened person.

    Anyway, I have to tell you I didn't cope and that 'evil incarnate' arranged a care placement for Mum in a secure EMI unit 8 weeks ago. The staff care for and address the patients with affection and respect. She has her own room which overlooks a quiet corner of the garden where there is little disturbing movement. Mom has some of the paintings she has done on the walls and various familiar things from home. She has gained weight and is physically clean. She recognises the key staff and will walk with them to the dining room for meals and for coffee.

    However Mom refuses to leave her room at other times so she sits there and completely refuses to use the resident's lounge area. Every external sound alarms her and she is afraid of other ambulatory residents, who sometimes wander into her room. As bedroom doors are generally locked during certain periods of the day, my Mother's unlocked room with her inside it, is constantly something new for the other residents to explore.

    Mum's reaction to their intrusion is 'to repel all Boarders' and try to push them back out despite being frail. There have been a couple of occasions where they have pushed back and this constitutes what the staff call an 'incident' as potentially a fall might occur. I got the impression that 'another placement ' for Mum may follow a number of 'incidents'.

    However the staff do seem to be at a loss as to what to do about my mother's security because they can't lock her in her room and she is unable to operate the door's security device as her hand strength is impaired by her strokes. They see her as the innocent party but she doesn't fit into their pattern of spending her days in the resident's lounge.

    I visit Mum for one day a week as I'm now back at school and it is a five hour round driving trip. Her neighbours call on a rota, which is very kind as they are equally elderly. Every visit to Mum finds her in a tearful and anxious mood, which becomes angry and accusatory when I leave, so I can't say she is any happier there than she was with me or at home. She has forgotten the difficulty she had living in both places, so her plea is for me to either take her 'home' or to my home.

    Each visit, when she becomes calm, I walk her round the lounge, the gardens or sit with Mum in the dining room over coffee for habituation and if other residents come over, Mum will tolerate them at the table for so long, then she needs her room. Worryingly on this last visit, we walked round the gardens and when we came back in, she didn't recognise her room as 'her' room and that took a lot of reassurance. Of course, when we left (My boys help with visits quite often.), Mum became distressed again.

    I don't know what the answer is...if there is an answer or a right way? She seems to be in a good place. Will she get used to being there? Will she eventually cope with the other people? There doesn't appear to be a lot of conversation or stimulation but then, Mum finds that hard anyway. Should I be satisfied that Mum is clean, fed, warm and (almost)secure? Can I make her quality of life better? We take in flowers, a little fruit, tactile things, pictures, short poems. She has had medication for anxiety but it has had a very short-lived effect. From what I've read, it looks like a long spiralling path with things mentally and physically not getting any better, so her current quality of life is always the best thing.

    All I know is that I sit here and she sits there and I worry that she is crying.

    Thank you to anyone, who has given their time to read this far.

    With best wishes.
     
  2. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello MumX4

    My mum is also in a secure EMI home that sounds similar toy the one yours is in, except it has 16 beds.

    Visiting to begin with was difficult, but she has never seemed to realise she is anywhere other than her "home" I think that home for Mum in her reality is where she feels safe ans she seems to be fine there.

    I have no idea what quality of life she has, because her world is so very different to ours, a unique place only she knows, but she seems relaxed and happy most of the time and I am so thankful for that.

    Do you know if visitors make your Mum more tearful and she is alright when she has none? if so, maybe you could try to have a break for a week or so to see if that helps her be more settled.

    We had to with Mum at first, it was horrible for us in the short term, it worked for her.

    Hope some of this helps.

    Kathleen
     
  3. Kayla

    Kayla Registered User

    May 14, 2006
    621
    Kent
    Dear Mumx4,
    My Mum also has vascular dementia and was very distressed by hallucinations and was too frightened and lonely to stay in her own home. She moved into an excellent care home in her village and was much happier, settling in really well. Then she had a fall and broke her hip, so she wasn't well enough to remain in the home.
    She moved into a Nursiing Home with EMI and seemed to cry nearly all the time for months on end. However the staff were very kind and she eventually settled down again. She is unable to walk, but has a friend who spends a lot of time in her room. She is not exactly happy, but is more back to her old self. She will hold quite normal conversations, then come out with something strange.
    Be patient, and eventually your mother will settle down. I think Mum feels more at home in the Nursing Home now and is familiar with their routine. I did find it very hard to accept Mum's condition at first, but now I'm coming to terms with it, so it is easier to cope. Sometimes Mum does have bad days for no apparent reason and then she is better the next time I visit.
    If you want to ask me any questions, please feel free to post me. I hope your mother settles soon.
    Kayla
     
  4. Momx4

    Momx4 Registered User

    Oct 19, 2006
    25
    Thank you so very much for your replies, Nada, Kathleen and Kayla.

    After I sent the post off, I felt quite distraught. Possibly writing made it more real.

    Up to this last few weeks I guess I hoped that Mum's clouds would clear and that this was just a bad phase. That other parts of her brain would take over from the damaged ones? That the expertise of the staff and being in a routine could provide the calming influence I just couldn't achieve? That her fear was just a bad balance of medication? That she would somehow go back to the stage of being forgetful, muddly Mum again?

    It isn't going to happen, is it?

    Kathleen, what you said about your Mother being in a 'different' mental place has truly given me something to think about. I may need to accept that Mum has moved into a phase that I can't 'fix' with helpful notes on her calendar, message boards, summarised news stories (!) - all the paraphenalia I came up with to help her hang on to what I perceived as a 'normal' life. Poor Mum, I'm not surprised she got aggressive, I probably 'organised' her into feeling like giving me a slap!

    I really do need to chew this over some more.

    Thank you, Nada, for your warm welcome and Kayla, I hope we can chat more through the boards. It is good to 'meet' you all.

    With kind wishes

    Diana
     
  5. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Diana

    Just wanted to say hello and welcome.

    I think we all long to be able to make things 'better' or 'normal' as we know it for our loved ones. I am slowly coming around to accepting this disease is like shifting sand, ever moving, each time you get to the point of acceptance of how things are, they change again.

    Keep strong.

    Best wishes
    Cate
     
  6. Helena

    Helena Registered User

    May 24, 2006
    715
    Momx4

    My Mother also has Vascular Dementia but she is nearly 90 and thankfully has only really been truly strange for 18 months but still living in her own home
    She is now in hospital with pnuemonia having fallen and has now taken a turn for the worse and is refusing food and drink

    They seem to live in a fantasy world of how they think things should be not the reality of how they are and seem to live in years gone back while struggling to cope with the now

    They can change so much from minute to minute hour to hour and day to day and theres no predicting what problem will be next

    One time my Mother would be talking gibberish yet the next she could hold a conversation and then suddenly she would go all vacant looking and unresponsive , then might pace about or go and sit and stare out of a window or being tightly holding her handbag screaming at you claiming you had stolen something and in between all this she would have days where she clearly felt totally unwell these days got closer and closer together presumably as each mini stroke took its toll

    Very very hard to deal with thats for sure
     

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