1. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Whoooooops - I was tired last night!

    Oh has informed me that HE was up with her, for nearly 2 hours, putting her back to bed 3 times, between 3.30am and 5.30am - each time, he caught her heading downstairs. And having said that, she must still have gone down, after he finally thought she was asleep, and dozed off himeself, as the lights were on when I came down. I can't believe I slept through that, its so unusual!

    She's up, and this morning we are all about how she has to go out and get a job. And about how she has spent all night walking (true enough, by the sound of it) though she is veering between thinking that she was walking for real or just walking in dreams. She's very despondent, looking for things to worry about/complain about - this aches, that aches, what if this or that happens, whats going to become of her - and the 'little one' is back - or rather, not so much 'back' as yet again, gone missing.

    I think it must be another UTI - sods law, its Sunday, and nothing I can do till tomorrow :(
  2. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    And - Oh joy - the nasty comments are back.

    "You've put weight on Ann - you look as fat as a pig to me" !!!

    Long day ahead!
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    I would be flattered. There are some elegant pigs out there

    ImageUploadedByTalking Point1417347860.709548.jpg

    :eek: :D :D :D

    Sent from my iPhone using Talking Point
  4. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    ROFCWL - thank you 2jays - I needed that laugh :D :D :D
  5. count2ten

    count2ten Registered User

    Dec 13, 2013
    Hello Anne, I am in utter awe at your resilience and strength - I've been going through these delusions/hallucinations with my mother for 18 months now - also visual disturbances (mainly cats and people on roofs, children sitting on trees and bushes, people waving and walking around harry potter-like in photos). She became very anxious and agitated, first lot of anti-psychotics zonked her out but the people went away (they had been under her bed, in her bed, coming through the floor and the walls, stealing things, eating her food etc etc.). But I was worried about the side effects so took her off them and things were quiet for a few months (it helped that it was a nice bright sunny summer , but been dreading the autumn coming with the dark gloomy days because it's all gone downhill again. Recent stuff, phone calls in the early hours, telling me that she's home now but not sure where everyone's gone, my father is still alive living with another woman and her kids, or down the pub "getting ****ed again", all sorts of bizarre stuff and disjointed sentences. A common theme is having to look after a young boy who should be with his mother who is a "*****" for leaving him with her. (Is any of this real I wonder - my brother was ill as a child and she carried a lot of guilt about it although she had no reason to). Had to drive round at 4.30 the other morning and found all lights on (I think she leaves these on every night) , clothes all piled up on the sofa (ready to pack and leave I think) , she'd had a wee in a jug she'd found in the kitchen (how she managed this without spilling anything on the carpet will remain a mystery forever). I worry that she will kill the budgies by feeding them sausages and chips, chocolate biscuits and wanting to take them out for a walk. She thinks I'm having an affair with the lad next door and worries that my partner will find out.

    Did the risperidone help at all? Been started on a very low dose but making her very drowsy and depressed. Doc wants to add Mirtazipine in few weeks but not sure all these things will help. What she needs is people around her 24/7 . I'm also worried now that she is getting very vulnerable to people calling at the door - in the past she has always been very vocal and just shut the door to everyone, but now she could be easily persuaded because she's not sure where she's living anymore. Everyone tells me to start looking at care homes but knowing how suspicious and paranoid she is (this is life long behaviour, not just the dementia) I'm selfishly thinking how much worse it could be.
  6. loveahug

    loveahug Registered User

    Nov 28, 2012
    Moved to Leicester
    Gosh Ann I'm exhausted just reading yesterday's antics, I do not know how you cope, you're a saint! Just a point, if you go for a stair gate get a tall one so MiL doesn't try and climb over it. An acquaintance's husband was going downstairs and sharpening knives in his sleep (he didn't have dementia) so she fitted a stair gate, he climbed it and fell down the stairs. Fortunately he didn't come to too much harm. I do hope you and hubby catch up on your sleep.

    Bet wishes
  7. Tin

    Tin Registered User

    May 18, 2014
    Oh Ann, on days like that I have given up trying to work out, why, what, when. Just hurts my head!!! I am lucky because all rooms are ground floor, but then unlucky because none of the doors close properly except for mums bedroom, so sometimes can't hear a thing!! Hope things calm down soon at the very least hope the chatter stops. Apart from the calendar we wouldn't know its Sunday, not a calm restful day anymore.
  8. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hi count2ten (love the name - so appropriate :D ),

    respiredone was a massive help, initially - it didn't stop everything completely, but it toned it all down, making it a lot easier to cope with - prior to that, Mil could go for up to 22 hours straight, shouting, accusing us of all sorts, determined to 'get out', banging on windows, doors, and working herself up to the point where we really thought she might have a heart attck, at the very least! Unfortunately, she has developed 'Parkinsonisms' - a promounced tremor in her right hand/arm, and an odd 'gait' and because of that, the respiredone is now being withdrawn, and replaced by memantine, We have actually had nearly 2 weeks of real calm - yes, delusions and confusion and repetition, but nothing that has left her agitated to any huge degree. This is since the memantine dose was increased to 15 mg a day. Its due to go up to 20mg, next week, and then the respiredone will start to come down. Mil is also on mitrazapine - this was given to combat severe night-time delusions/dreams, and to be fair, that has worked brilliantly.

    From what you say, it may be that 24/7 care is now in order for your Mum. I know that 14 months ago - and Mil wasn't as bad then as she is now - being preyed on by doorstep and phone cold callers was a massive issue for us, and that along with night time outdoor wandering, due to believing her late husband was missing, led to us realising that she couldn't be left living alone. Both OH and I are (or in my case, were) professional carers with many years experience, and we have a lot of reasons for trying to care for her in our own home. That just isn't possible for everyone, for a host of reasons, and had we not been able to at least give this a go, then we would have looked at residential - if only for safety's sake. The fact that Mil - like your Mum - is suspicious and sufers from paranoia, and has a huge fear of being put in a home, would have been outweighed by the need to keep her safe. You don't have to decide now, but I honestly think - from what you have said - that it might be an idea for you to at least start preparing for that eventuallity, sadly.

    Thank you, loveahug - I will keep that in mind if we go for a stair gate x

    Tin, I hope your day is calmer than mine - you've had enough over the last few days with the constant coat on, hun! I think you are due a break and a bit of peace!

    Got her upstairs for a bath/shower - nothing but complaints and critisms, and more rude remarks. Continued when she came downstairs, and so in the end, I've ordered her into the other room, to give me some peace. I'm really frustrated that I've had to be firm, but don't know where else to go when she gets like this - though it won't stop her, it will buy me some peace while she sulks, and that peace is much needed at the moment!
  9. count2ten

    count2ten Registered User

    Dec 13, 2013
    Thanks Ann, all/any information is so welcome and helpful - this forum is a life saver, makes me realise I'm not the only one and there are people coping with so much more than I am. Just got back from my mothers, spend most of my free time there now, she's very suspicious of the new carers and hid in the bathroom this morning when they came, they phoned me and I told them to leave her cereal out with a jug of milk but not to push it with the tablets - she's refused them 3 times now. Would only take them from me but not the new one, so we may never know if the Risperidone works or not! Place was a mess, I think she's been up all night - water in the sugar bowl, tea in the glass of water, all this evidence is telling me she is now starting to have problems with simple tasks that she could manage even a few weeks ago. The carers didn't feel they should do anything so the place is untidy, the kitchen floor is sticky and the toilet bowl not cleaned. The bed never gets made anymore and I had to put her washing on again today. Sorted out her fridge again yesterday and did all the shopping, vacuumed the house and generally tidied up., (What am I paying these carers for?). Anyway, she reckons last night there was some kind of party, all the "gang" came home late and made all this mess. Made the big mistake of saying, do you think it could be a dream (I know, I know, wrong and stupid of me, but I'm still obviously in some kind of denial) - she got all huffy and said that's it I'm not telling you anything anymore,. Then 5 minutes later after I made her some lunch she told me all over again. This time I just sympathised and her world was ok again.

    If I had a big house, if I had a ton of patience, if my partner and his son are willing to live with this problem for the foreseeable future, maybe I could avoid the CH situation. Should I sell up and move into somewhere with her? Should I use some of her money and get a downstairs toilet/shower room built so she can move in with me? Ive been thinking about releasing some of her equity (I have LPA ) and have a live - in carer, but her place is so small and there's no guarantee it would work. Like yourself, I have worked in the caring setting and my experience has told me to step away from the residential care scenario - having said that, there is one really good home about 10 miles from me that has the best reviews, the happiest people and the loveliest carers - but how do I even bring the subject up with her. I think it probably has to come to a crisis before we could even consider it.
  10. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hi Count2ten,

    We had the same issues with carers, with Mil before she moved in with us :( It took a long time, but in the last few months, Mil had finally agreed to just one carer visit a day. However, she would not let them actually do anything once they got there. Her LA had a minimum 30 minute visit rule, and the staff would come in (usually with the key from the keysafe, as Mil would not answer the door) check her blister pack to see if she had takne the previous nights and that mornings tablets - not that they could do anything other than note it, if she hadn't taken the night ones, was too late then for her to take them - and if they were lucky, she would make them a cup of tea and chat for a short time, before telling them to leave. If she let them stay 15 minutes, they were doing well! So, like you, OH and I would be down there, 4 or 5 times a week, trying to persuade her to let us help with all the things the carers were supposed to be helping with - not that she would always let us, either!

    The medication issue was another biggie for us. It wasn't so much that she would refuse all meds, as that she would forget to take them, or take too many or generally mix and mess them up. Have you tried giving the respiredone covertly? Yes, I know thats frowned on by the medical profession, but as carers, we all know, needs must!

    Please, please, think long and hard before either moving in with, or having her to live with you. There are two of us here, with Mil, and though I do the bulk of her care, at least I have OH, who can and will step in regularly, when he is home, and share the load. On the days when he is working a 12 hour shift, and I am solo with her, I am exhausted even on the good days. On the bad days, it goes beyond exhaustion. You do become very isolated, and you do find that 99% of everything you say, do and think is all about the person you are caring for - its all consuming, and as 2jays said - its relentless. You can't plan anything - even with really good day care available for Mil, I have to cancel so many plans last minute, either because she is ill, or because something comes up that needs sorting for her and it can't wait. In the last 3 weeks, I've had to drop out of two photography assignments, because Mil had the runs and I had to be at home to deal with cleaning her up - she won't let OH help with personal care, she can't do it herself and it can't be left, even for an hour or two. I also, during this time, cancelled one of my weekly volunteer stints at a gallery, as I got a last minute phone call saying that the extra banister rails we needed were going to be fitted that day - and I cancelled lunch out with friends simply because I was so tired, I couldn't face it! Other days, whilst she is at day care, I've been dealing with paperwork, out shopping for and picking up stuff for the bathroom adaptations we have had to make, on the phone sorting appointments for her, picking up meds, and tackling jobs that I can't do when she is around - like mopping floors, and searching her room for hidden, smellie undies. Finding time for the rest of the family is a huge effort at times - finding time for myself - er, pass! Not happening a lot of the time. What about work, if you work? I'm a free lance photographer, and it takes military style planning for me to be able to get to say a wedding job - OH often has to use a days annual leave, so I can maybe take on one wedding a month. And it will impact on your relationship with your partner, no matter how strong that is - OH and I have found that a lot has changed, and though we are doing OK, it hasn't been easy - and its not going to ge easier.

    I could go on and on, but you will have got the picture. Suffice to say that even with experience, even with good day care, even with OH so I'm not solo, I often wonder if I am going to be able to sustain this - so far, I'm managing - but, to be blunt, we all know that with dementia, its probably only going to get harder, hun x

    It was a 'nasty' day, yesterday - first one in nearly 2 weeks! All 'I want' and when and if she couldn't have, straight to insults and digs. I'm apparently evil, I like being cruel, I'm spiteful, I'm lazy, I have no heart, I do absolutely nothing for her, it would kill me to even give her a tiny bit of help when she needs it, I get a 'kick' out of making her miserable - and the best one? Its a good job she can take care of herself because she would be stuck if she had to rely on me!!!!. As is typical, she would wait till OH wasn't in earshot, before delivering ewach comment - however, he is wise to that, and heard plenty. Thats a tough one for him - he knows what i do, and he has trouble getting his head round hearing his mum being so horrible to me :( Sundowning made everything worse - again, no extremem agitation, but constant 'Home, home, home'.

    Sample going into GP's today - think it must be a UTI, or maybe that should read, I hope its a UTI! Its been nice having the comparative calm of the last couple of weeks, don't want this to be the start of another phase of upset :(
  11. Grace L

    Grace L Registered User

    Jun 14, 2014
    NW UK

    I'm sorry you are having the fat comments, I understand all too well.

    MiL has recently re-acquainted herself with my fat being obsession .....along with the spiteful comments.

    Thing is, I'm the opposite of fat, would struggle to weigh much less.
    When I had my flu jab and winter service , GP said I could do with putting on weight.

    I've been wearing winter woollies, so do look a bit bigger (not much), and MiL has noticed.
    She's been making comments like ....
    "You're fat enough already, You are not going to eat all of that are you" ...
    when we've been out for tea and cakes.... then reaching over and helping herself to my portion,
    before she's even started on hers !!

    One of my nieces, also slim has similar 'fat comments' ... and she's slimmer than me.

    One time, we had ordered lunch at the bar (in a pub), and then she saw the waitress ... who was fat.
    Weelllll, I must say, that was enough to put her off eating !! and she got up and left before the food arrived.

    MiL is round, really-round... and notices other fat people and tells them ...
    Even people on TV get the fat comments.
  12. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Hi Grace,

    Lol - I wish I could say that I'm nice and slim! I'm a fairly 'average' size 14, so hardly Twiggy, I'm afraid. However, Mil is a size 16, and several inches shorter, so its a bit 'pot, kettle, black' when she starts. She is dreadfully pass-remarkable with people she sees when we are out - comments on weight, clothes, hair - and is NOT complimentary at all :( The comments aimed at me, when she is in 'one of those' moods are very definitely meant to sting. The weight is just one of her favoured topics. Another is she will ask if I am married to her son - now I get that all the time, and often, when I confirm that I am, the response from her is 'Oh I didn't know that!' - but when in 'one of those moods', she will reply with 'Well - I didn't think my son would marry someone who looks like you/has a face like yours' :rolleyes: And its not restricted to how I look - I can have changed all the bedding, and she will spot the laundry basket overflowing as I start to get it all through the machine, and pass a remark about she wonders if I'll ever bother actually trying to keep up with the washing? Or - on a Sunday, if I am still in my dressing gown when she gets up - a snappy ' Do you ever bother getting dressed?'. I can hand her a drink and forget 'Thank you' - I'll get 'I bet it nearly killed you, making that for me'! Or, out of the blue, 'Do you not worry that your kids will grow up as lazy as you are?'; 'The problem with you is you don't have a heart - you have a swinging brick'; 'Do you get a kick out of being so cruel'; 'It would kill you to do anything nice for me'; 'Do you ever try and make the house look tidy?'. If I come into the lounge and sit down with a book in the evening I can get 'Do you spend all day sat on your bum reading?'. The tone is always the same, and if either I or OH (when he hears her - she often waits till he is - she thinks - out of earshot before she will make one of those comments) pull her up on what she has said, she will tell us that she was 'just making conversation', or is 'entitled to her opinion' :rolleyes:

    On days when she is like that, I end up feeling like I am permently on alert, waiting for the next verbal shot ! Its OK saying, 'its not her, its the dementia', can tell myself that over and over - but, several hours filled with repeated insults and digs does have an impact. Its not all day, every day, by any means, thankfully, though - I honestly don't think I could cope with that, because it does demoralise and leave me feeling very self concious and defensive.

    The odd thing is, her care staff have said to me that when she is at day care, she often talks about me in really complimentary terms - so I suppose it could be worse, lol - she could be nice as pie to my face, but be telling others all sorts about me!
  13. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    This mornings conversation :D

    Mil - 'Why am I up and dressed so early?'
    Ann 'You're going to day care today'
    Mil 'Oh - not today I'm not. There's no school today'
    Ann 'There is, hun'
    Mil 'No - not today - there's no school anywhere today'
    Ann 'There is, Hun - and its day care you are going to'
    Mil 'Ann - I'm telling you, there is no school today - its a bank holiday. Everywhere is closed!'
    Ann - Todays not a Bank Holiday - its a Tuesday, anyway'
    Mil - 'Thats right - Bank Holiday Tuesday!'
    Ann - 'There are no Bank Holiday Tuesdays!'
    Mil - 'There are in September'
    Ann - 'Its December now'
    Mil - 'And in December too'
    Ann - 'Shall we look at the calendar?'

    *We look at the calendar and I point out that all Bank holidays are highlighted in red - and today isn't*

    Ann - 'See, hun - its not a Bank Holiday, so day care is open today'
    Mil (with a big sigh and a glare) - 'I don't know Ann - I sometimes think the only reason you talk to me is so you can have an argument'!

    Mini bus - please be early today :D
  14. Grace L

    Grace L Registered User

    Jun 14, 2014
    NW UK
    Thank you TP, It really does help that we can post our frustrations...

    MiLs comments include....

    Oh, I cant bear to look at you .... go and put some make up on.....

    Well..... I must say ... (when she says this, you know you are in trouble) ....
    You knew I was coming, and you chose to wear that !! Go and get changed....

    I get loads of comments about my clothes, even the ones she likes.
    And you would think I was fat from the comments she loves to make.
    Sometimes only 'bits' of me are fat.... such as my face.... saying I look fat and bloated.

    Well I must say..... I can see you've at least tried to have a bit of a tidy....

    Well I suppose it will have to do (roast dinner with all the trimmings) ... buuuttt (oh gawd help me) ....
    I wish you had told me we were having that, I wanted x ....
    having shadowed me making the entire dinner, it came as a surprise we were having a roast dinner.....

    Even slim people on the TV look fat to MiL, its very strange, and comments re getting worse.
  15. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Oh Grace - do you think your Mil and my Mil are twins! That could be my Mil talking :rolleyes: I tend to tense inside when I get 'Ann - do you mind if I ask you something/say something . . .', which is her version of 'Well - I must say', by the sound of it. Do you get the 'back-handed compliments', too? You know, like 'Oh Ann - is that a new top?. Its nice to see you making an effort - for a change!'.

    Sometimes, I can find my sense of humour, and laugh it off - but not always!
  16. Owly

    Owly Registered User

    Jun 6, 2011
    #156 Owly, Dec 2, 2014
    Last edited by a moderator: Dec 2, 2014
    It might help you to read about Eckhart Tolle's concept of the "pain body" which is described on many websites, this one below being just one example -


    For even more understanding, read his illuminating book "A New Earth".

    The pain body is described as a parasitical force that lives in all of us. It feeds on pain and bad feelings. It needs food so it accepts or even invites situations in which pain will be received, or it will re-run old hurts from time to time, things people said or did to us, so that it can get its 'food'. It sounds as if your pain body is getting more than its daily dose of pain-food.

    MIL seems, in spite of her dementia, to have a highly intelligent ability to decide when to inflict pain and when to act charmingly. That is why I think - as I said on a previous post on this thread - that she contains one or more invading forces (entities? sub-personalities? demons?) that interchange. One comes out at her day centre, so that she appears to be a charming and appreciative lady. And the other is reserved mostly for you, because she/'it' knows that a wave of pain will arise in you, and that 'it' within her is feeding on your pain too.

  17. RedLou

    RedLou Registered User

    Jul 30, 2014
    #157 RedLou, Dec 2, 2014
    Last edited by a moderator: Dec 2, 2014
    Ann - I think you are a saint. :)
  18. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    I write all mums down. It is good reminder for me about how this horrible disease affects.
    My mother told me she didn't want to be my mother anymore. That is rather painful.
    TP is a place I know I can whinge and vent and sulk about my mother because at the moment she is horrible.
    I think may of the people who suffer with this disease are intelligent. Dementia or not my mother knows my buttons. Probable because it is an old memory :). She has always pushed them.
    Kinda a bit stunned at that observation Owly considering it is a forum which is well used for venting.
    On a side note from that.
    I am fat but I think even with dementia mum decided I was a lost cause and would never lose weight. :). I just get the "you have stolen everything from me"
    Ann thank you and tin and others who tell me by the stories of their mothers and mothers in law that I am not alone.
    That feeling like a kid again even as a woman in my fifties because it is my mother yelling at me.

    Ann you have more to contend with your MIL than my mother and she is in care
  19. Grace L

    Grace L Registered User

    Jun 14, 2014
    NW UK
    I cant remember when MiL had anything nice to say about how I look, or what I'm wearing.....
    so no back handed compliments.....

    When I cared for my husband (VaD) she hadn't been diagnosed with Alz, but if I think about it,
    her little digs, comments started way back.

    When my husband were alive, she'd comment on his clothes, or if he was unshaven etc...
    Now her interest in fashion, clothes, make up, hair .... has shifted onto me (and my slim niece) ....
    people in a supermarket queue, café.... just about anywhere.

    I never had this behaviour with my husband (VaD, possibly picks, lewy, mixed) ...
    I wonder if the fat, fashion comments are more a female trait of Alz?
  20. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    Actually just remembered mum has no social niceties. For example she will say in a regular voice 'oh she is nasty' or 'she looks guilty' this is about both residents and staff.
    They are within hearing

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