1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

A few more questions - sorry!

Discussion in 'I care for a person with dementia' started by Champers, Feb 7, 2019.

  1. Champers

    Champers Registered User

    Jan 3, 2019
    Firstly, thank you to EVERYONE on this forum. It’s a lifeline and such a supportive community. As probably most of us posting on here are starting out on this unchosen route, every twist and turn presents something new. To be able to pool experiences and knowledge makes a huge difference when trying to cope or relying on conflicting advice from outsiders.

    I posted several times already about my 87 YO mother whose existing personality issues also muddy the waters. She has recently been diagnosed with early onset Alzheimer’s.

    She lives alone but I have arranged as much as possible for her to ensure she is a) checked on and b) is kept as mentally busy as possible.

    Mother regularly sends her carers away as she “is going out to lunch”,”going to stay with her daughter”, “not feeling well” etc etc I can’t force them upon her but it’s so frustrating when I live a distance away and their visits give ME peace of mind. Although I’ve but up a large notice board for her with a weekly routine - who to expect and when - she tells me she sent them away because she wasn’t expecting them and didn’t know why they were calling.

    One day a week it was suggested by her consultant that it would be beneficial for her to go to a day centre to engage in stimulating activities with others like herself in a small group. Every time the minibus turns up, she fobs them off, again with the same excuses. She rings me 5 times a day telling me she’s lonely and not seen another person for days - which I know isn’t true - but has also said that she doesn’t want to go to the day centre “as they’re not her type” (incidentally, she’s always been quite a snob!) Has anyone any ideas of persuasive language I could use to encourage her?

    I also get a regular call from her about her house. “When am I going home?” “Could you give me a lift home?” I’ve learnt to defer a direct answer but she’ll then say, “Of course, this is my home and one day it will be yours.” Is this a common theme?

    Another daily call is about how “terribly ill” she is. Whenever I suggest I call her doctor, or even an ambulance on occasion when she’s “been struggling to breathe and stand up” she says she doesn’t want to waste the NHS’s time as she’s too old! She also has refused the offer of a prescription for Aricept for the same reason. Again, has anyone experienced this type of cry wolf scenario?

    Her calls have regularly left me in tears of frustration but thanks to all your posts, I’m slowly learning there is no logic and no way to reason with her and that whatever happened or was said one day, is irrelevant or forgotten about the next.
  2. WA123

    WA123 Registered User

    Jan 20, 2018
    I have similar problems with my mother although she hasn't formally been diagnosed with dementia. My husband has the diagnosis though so I have recognised the signs and try very hard to use the strategies I've put in place to help him. My mother however knows exactly which of my buttons to press and I was at my wits end with her. Like your mum she is also a snob and I couldn't see her in a day centre or at any of the local care homes I knew of which did day care. I searched and searched and found a brand new one only 8 miles from her which is very much her style and makes her feel pampered so got her in there one day a week. It is quite posh and she couldn't afford to move in permanently but one day a week makes a huge difference to her well being. They will collect her and take her home but I was fairly sure she would come up with reasons not to go just because it's a lot of effort for her to get ready to go out in a morning. As a result I drive 40 miles once a week to take her, spend the day doing her shopping and having some time to myself, pick her up, have a cup of tea with her and then drive 40 miles home. This has actually been useful in many ways. I make sure she gets there, I know she has enough food in her cupboards for the week to come, I check everything's ticking over in her life, she has people to talk to and something to look forward to, she gets to see me every week and, most importantly, I get some 'me' time while I'm over there. Once or twice she's rung me just before I've set off and said she's not going but I just tell her I'll be there in a hour so she needs to start getting ready. Every time she's done just that and hasn't regretted it once.
  3. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    Yes I saw that in both my FIL and own dad. I really felt with dad in particular it was because he knew he felt something had changed in the way he felt whether physically or most probably emotionally but wasn't able to coherently express himself so that was his only way of saying something felt wrong or different although he didn't know what. That definitely showed itself in phantom tummy pains when he became upset. As I lived with him due to circumstances of mum dying suddenly..reassurance and distraction sometimes worked but not so easy as you are on the end of the phone
  4. Chrissie B

    Chrissie B Registered User

    Jan 15, 2019
    Oh wow, my mum had twins and I didn't realize lol.
    Don't know what would work for you Chambers, it's trial and error I'm afraid. I can say what used to work for my mum before she went over to new issues though.
    The wrong kind of people, I got in first. "Do you know what mum, it's so expensive in this place that only people with lots of money can afford to go there."
    On my mum being told by her friend (same age without the Alzheimer problem) that there was no way she would go there, I said, "Hmm, she's just jealous, she wouldn't fit in because only people who can afford it go there, by the way, how are you fitting in?"
    I can't help with carers situation though, I employed a cleaner to come in, and whilst there, could she give tablets, heat up food, etc. I did tell her I didn't mind if she couldn't get all the cleaning done because sometimes my mum can be difficult, however. It worked out pretty well for quite a while actually, I gave her more hours to finish the cleaning if it didn't get done, and sometimes she would cut my mum's hair and paint her fingernails for her to fill in the time. If my mum had problems with her, I would tell my mum that at the end of the day, she was in charge of telling her what to do since she was her employer. My mum got to the stage when she would insist she bought the ironing board downstairs and ironed in the living room, so she could watch her. I suspect it was for the company. Eventually, my mum did start to need proper care, and I'm afraid the cleaner was complaining that she felt fobbed off, because she was employed as a cleaner and not as a carer. It was a shame in a way, because actually, she was very good as a carer, even drove my mum down to appointments with her physio when needed.
    I'm afraid I don't have the medical emergency trait worked out at all. My mum even now develops sudden emergency situations where she is dying, can't breathe, used to be always when I was going home, she was so good at it, I sometimes called 111 and paramedics used to come down. Usually, their visits cured her after 10 or 15 minutes after their arrival, and her hysteria was cured even quicker. Eventually, 111 calls led to them telling me to ring up in an hour unless she had stopped breathing or was having a stroke. I didn't realize until this started happening, how qualified I actually was, and that's without going to any med school.
    Now she has a full-time carer, it's eventually narrowed down to telling me about all her aches, how she is going blind, has a temperature, needing a second and third opinion if necessary, after I've been there for about half an hour. To think I used to an amateur doctor, and now I have become the plague leading to black death, talk about going downhill fast.
    If you think of anything though, I would love to know that answer.
  5. Sirena

    Sirena Registered User

    Feb 27, 2018
    I am not sure you would be able to 'persuade' her to go to the day centre (or let the carer in) because five minutes after the conversation she will have forgotten it and revert to her default 'no thanks' mode. The only way you could do any persuading would be to be there when the doorbell rings. She may also feel unsure about mingling with people she doesn't know due to her mental deterioration (although she would never admit it). If she got to know the carer/someone at the day centre, she may well then be more amenable. It would be worth trying what ChrissieB suggests though!

    Your mother is right isn't she - she is terribly ill, she has dementia. My mother went through a phase of phantom illnesses and went to hospital several times, twice with 'suspected heart attacks' (reflux) and once with 'lung cancer' (an allergy). I think it was responding to the feeling of 'knowing something is very wrong' and choosing a physical reason to try to explain it. The phantom illnesses stopped shortly after she had a daily carer who was with her 4 hours a day, which meant her anxiety lessened.

    I suspect your mother may soon need more help. Around this point my mother more or less stopped eating because she could not remember how to prepare food. She didn't know how to do her laundry either so she just went out and bought herself new clothes. It's really difficult to spot when someone cannot do these simple tasks unless you spent a lot of time with them - we lived a long distance away, so didn't spot the signs till relatively late.

    Would you be able to be at your mum's one day to 'introduce' the carer, and stay and chat while she is there, to smooth things over? I never said the word 'carer' to my mother, I just said a nice lady was coming to help her with things she found difficult like carrying heavy shopping.
  6. TheBearsMummy

    TheBearsMummy Registered User

    Sep 29, 2017
    East Midlands
    Our pwd completely denies that she has a cleaner even though she has been going for a couple of years and she also does hairdressing and nails. However our door camera shows she is greeted with a smile each week.
    As for the carers we refer to them as the nurses helper who comes to bring her tablets which we keep in a safe in a cupboard (out of sight out of mind). Initially she was very resistant to them and sent them away but after 2 hospital admissions due to her getting in a muddle with her heart tablets we bought the safe and claimed it is doctors orders that the "nurse" must give the meds otherwise she has to go into hospital. She has no memory of being in hospital but the threat has got through to her.
    The carers have won her over by a mixture of familiarity and by claiming they have come to see the cat - he laps up the fuss and attention.
    It did take a while and some difficult phone calls to get her to let them in twice a day but now she is quite happy to see them and one even manages to get her into the shower occasionally.
    With regards to the crying wolf we also went through that stage but quickly realised we were encouraging her by dropping everything and rushing to see her so some tough love was needed. We told her to pack her bag with several days clothes and her toiletries as she would be going straight to hospital as there was obviously something seriously wrong with her this immediately got the response of "there's nothing wrong with me I'm not going to hospital, I don't need a doctor".
    Now when she calls we tell her to go to bed and one of us will go round after work and she does go to bed. We alert the evening carer and she checks on her and reports back after her visit. Normally she will wake and take her medication but then sleeps through until morning remembering nothing at all about it
  7. Champers

    Champers Registered User

    Jan 3, 2019
    Thank you for all your replies - very much appreciated.

    Interestingly, mother has always done the ‘illness’ thing throughout my whole life, particularly when she’s wanted to stymie someone else’s plans, but I hadn’t considered the very valid point about her “knowing something is wrong” even though she complains bitterly about having to attend any medical appointments and is in complete denial about her diagnosis. She has told me that apparently her doctor has told her she is amazing for her age and 100% fit - even though I know she hasn’t visited him without me in attendance.

    I’ve reluctantly cancelled her weekly care centre visit. I arranged with the person who collected her that I would ring mother 10 minutes before they arrived so she would be ready and to enable her have her head around the visit. Unfortunately, I mentioned to her on the phone the day before that she would be hearing from me which sent her into an absolute raging meltdown. I was accused of meddling and making things up about her and that if anyone had a problem, it was me! Consequently, in the morning, she wouldn’t answer the first 4 times I rang her and then took the phone off the hook. The day centre carer and driver were given short shrift too!

    I guess I can do nothing more to assist or put anything else into place until there is a crisis, although now she is a bit more biddable about her home visit companion carers. She seems to be under the impression that she is doing them a favour and that THEY are visiting her because THEY want a cup of tea and a chat. Mind you, if that’s how she accepts it, that’s fine.

    A lot of the problems we are now having to deal with have stemmed from mother’s persistent lying and fabrication of facts all her life. Even when I was a child, she told many untruths and would go into complete denial when confronted with the actualities. Many of the fantasties and stories she has made up over the years have now, in her mind, become hard facts so combined with the Alzheimer’s, they’ll never be shifted now. She would always swear blind that certain things had happened a certain way - always to put herself into a favourable light - which I’m convinced has made diagnosis more complex because she has actually lived for a long, long time in an ‘invented’ world, if that makes sense? A sadly, complex personality.
  8. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    This sounds like my mother-in-law She had a personality disorder almost all her adult life combined with various other mental health conditions and a generalized anxiety disorder . It took family members quite a long time to realise there was anything else going on other than her existing mental health conditions.
    She had used illness all her life to gain attention whether it was a family member or other professionals. As you say the lying the fabrication of events was quite usual for her to put herself into a good light compared to other people.
    We introduced carers to her in fact before the dementia diagnosis because of her mobility issues originally at the time she accepted them albeit reluctantly . She allowed them to come in but they didn't actually do anything other than provide simply talking companionship. As things deteriorated and she needed someone to prepare her meals, we increased the carers visits whether she liked them or not.
    Briefly she went to a day centre but as was often the case she used to claim that people would upset her or argue with her and eventually she just refused to go. Everything throughout her whole life had always been someone else's fault.
    My husband and I had some training from a lady from the charity Mind about how to deal with dementia type issues. One of the biggest problems she said that families like us dealt with ,was the fact that if the person with dementia already had a pre-existing mental health condition, it was difficult to distinguish as you already said ,between the dementia and what was the mental health condition speaking.
    We realised that she needed care however because her refusal to go out of the house even to come to our house ,it made it virtually impossible for her to get her out into a care home. We would have had to use the good deal of subterfuge and deceit and at the time my husband was not prepared to do that.
    So we just waited for a crisis which eventually came last summer when she fell ill in the heatwave and went into hospital. Once in there we immediately organised for her to go into a care home she was self-funding so it was quite easy to sort out. My mother-in-law never considered that there was anything wrong with her at all although in reality at the end she could do nothing for herself

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