Don't know what to do now.....

Discussion in 'I care for a person with dementia' started by piph, Jul 21, 2015.

  1. piph

    piph Registered User

    Feb 4, 2013
    To cut a long story short, Mum was diagnosed with mixed dementia about two and a half years ago. Just over a year ago, on the advice of the Memory Clinic, we asked SS to assess her as she had stopped looking after herself, although of course, she says she's fine and can look after herself perfectly well. Anyway, SS decided that she needed 2 care visits a day to oversee the taking of meds, to be there while she showered (in case she fell) to get her a meal etc etc etc.

    She has continued to deteriorate, although she won't have it, and is still convinced she is looking after herself (she isn't). The carers have tried and tried, used every trick in the book to get her to comply, I've tried everything I can think of, but it's just not working. The worse she gets the more she fights against her carers.

    I'm now getting regular calls from the carers saying she is refusing to let them prepare her a meal, refusing to get up, won't shower, the bungalow reeks of urine (I know all this, of course, from my visits, and having stayed with her for 2 months over the winter).

    Two calls yesterday evening and then this morning. Apparently she has been in bed for the last 3 days, doesn't seem to have eaten or drunk much, says she's "had a bad night" (stock answer when she refuses to get up!). I phoned and asked if she wasn't feeling well, and got the usual answers that she was fine, that she didn't get up because "it made it seem like such a long day" (another stock answer). Swears she's been eating when and what she wanted, that she showers or has a strip wash every day etc etc etc. I'm sure that she thinks all this is the gospel truth, and anyone who doesn't know her would think the same, she is very plausible. I almost believe her myself! I'm sure that the carers aren't making it up (why would they?) and I'm just about at the end of my tether - I just don't know how to handle this any more.

    Mum got really stroppy with me on the phone (and I don't blame her really) saying that she wasn't allowed to do what she wanted. I tried to explain that all I wanted was to keep her from getting ill, and to keep her at home for as long as possible.

    I think we are going to have to back off, because I'm really afraid that she's going to refuse the carers completely, and then there will be nobody checking going in to her at all. If anyone has any ideas on how we get her to accept the help being offered, or even to get her to accept that she needs it, I'd be eternally grateful.

    Thanks for reading!
  2. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    I wish I could give you some constructive comments, but I find it very difficult and frustrating too and don't have any real answers either!

    I am trying to keep my aunt (who has dementia and lives on her own) and my mother (who doesn't have dementia but also lives on her own) both safe and well but they are equally as stubborn and unwilling to accept help as each other.

    I have come to accept that it can be counter-productive to keep on trying to get them to accept what might be best for them when they don't seem to want any changes for the better. As you say, it probably is better to back off a bit, but I know it's easier said than done.

    We offer help and do what we think is best for them, but in the end if it doesn't make them any happier, have we achieved anything? If we are all less happy, then that's got to be a backward step, hasn't it?

    I do the best I can from day to day and try and prepare for what might happen in the future.

    Good luck!
  3. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    Oh Piph, bless you. I have been in exactly the same position. I did so much for my Mum that she was 'under the radar' of Acute services. In the end, she threw me out, her situation deteriorated and she was hospitalised. She never returned home. She is challenging and aggressive and insists that she can look after herself but hospital assessments proved this not to be so.

    Please do not think I am prying but I think your Mum's GP should visit and hospitalise her; she is at risk of Deep Vein Thrombosis from her bed-rest and should be tested for such. This can lead to pulmonary embolus. If your mum is demanding to stay in bed, this needs monitoring. It might be a way in for getting your Mum the appropriate care she needs (whether she likes it or not, as her mental capacity probably isn't complete enough to make rational decisions for herself.) I empathise so much with you. It is a long, arduous journey but we are here. Xx

    Sent from my iPad using Talking Point
  4. roni

    roni Registered User

    Jul 4, 2015
    Hi do you know what , this could be me writing that quote. I am in exactly the same position having phoned SS 4 times this week . It's doing her blood pressure and my anxiety no good . Our loving mother daughter relationship has all but broken down . I have to remember she doesn't live in a rational world and so I just have to make sure I do the best for her health at the minute .it breaks my heart that we have become two empty hearted strangers almost trying to live in a parallel universe. All I can say is she cannot make a rational decision about her care so ask SS to step in and make a "best interest" decision under the mental capacity act . Love and light I know you'll get through it .
  5. piph

    piph Registered User

    Feb 4, 2013
    #5 piph, Jul 22, 2015
    Last edited: Jul 22, 2015
    Thanks. I've spoken to the GP, and she doesn't see a problem! She says it's normal! She has been deemed by the Memory Clinic to still have the mental capacity to make her own decisions, and, as she is in no danger (she doesn't go wandering, nor does she fall). She is so plausible, and confident in her answers to questions that she is believed most of the time, by 'the powers that be'! It's only those close to her and one or two of the carers who know how things really are, and even the majority of the carers just see an independent little old lady with a poor memory. She is stubborn as a mule, and can be very passive aggressive, when it suits her to be. I just feel really guilty that I don't seem to be able to sort this out - I do all the 'admin' for her care etc, but I can't be her 'hands-on' carer - I've tried and just get so frustrated and cross, and it's totally ruined any relationship that we had. I just seem to be nagging at her all the time. That's why I've decided to back off a bit, and also to ask the carers to back off as well, when it comes to food and getting up and showering. They will still go in and offer, but not try to persuade her if she says 'no'. Hopefully, then we may be able to get some sort of loving relationship back. The social worker says that unfortunately, in these sorts of situations, we just need to wait for some sort of crisis to happen. Of course, I'd much rather it didn't, but I see no other way.

    Roni - this is in reply to your suggestion as well - we just haven't reached that stage yet.
  6. lizzybean

    lizzybean Registered User

    Feb 3, 2014
    With regard to food & drink, can the carers make a meal/prepare a drink & just leave it on a tray in her bedroom? Then at least she can have a pick at it when they've gone if she so chooses. This way she is not being ordered/cajoled/persuaded to eat it is her choice & nobody is watching.

    Of course she may still not want to eat but if sandwiches are left she may just have a nibble.
  7. Demonica66

    Demonica66 Registered User

    Oct 23, 2014
    Hi Piph, sadly, that's exactly what I had to do; wait for a crisis to occur. It leaves me incredulous that in our (supposed) 1st world, we have to wait for a loved-one to be in danger before anyone will act. My mum also, is very erudite and convincing. She confabulates everything. I know the turmoil you feel. Believe me, I have trodden (and still tread) the rocky path. Please carry on posting. Even to off-load. X

    Sent from my iPhone using Talking Point
  8. Quilty

    Quilty Registered User

    Aug 28, 2014
    I have sadly lived through the situation that you are in. Carers in 3 times a day for Mum with Alzheimers and Vascular dementia. I did all shopping and laundry. Had a cleaner every week and she had been in bed almost 100% of the time for 6 months. Not eating and drinking, taking too much medication even with a docit box and hearing things. Shouting abuse every day and anyone who phoned or came into the house.

    The carers did nothing about the failure to eat and drink and she eventually had multiple falls due to dehydration and spent a night on the floor in her own waste, for the second time. I refused to take her home after the second time and took the key out of the key safe. She could no longer remember she had an alert button.

    She has now been 3 months in a nursing home and is a different woman. She is calm and reasonable, allowing the carers to wash and dress her each day. The carers think she is lovely. I keep waiting for the bubble to burst. I seems out of her own house the rules are different. She is up and dressed EVERY DAY. Your Mum might need this too. If she has a fall dial 999 and tell them you are unable to pick her up and don't know how long she has been down. Best of luck.
  9. piph

    piph Registered User

    Feb 4, 2013
    Yes, they do that sometimes - but she really needs to eat a hot, balanced meal each day. she can't survive and be healthy on sandwiches, toast, cake and biscuits! I've changed the time time when the evening carers call to a bit later, as she says she isn't ready to eat a meal when they come. But if she's staying in bed most days until late afternoon (and often not getting up at all), then having toast or something at about 4pm, then she isn;t going to want a meal at 5.30ish when they come. I've asked them to come between hakf six and seven to see if it makes a difference, but I somehow doubt it!
  10. piph

    piph Registered User

    Feb 4, 2013
    She's nowhere near that stage yet - so we've got lots to look forward to! :(

    She adamantly refuses even to discuss going into a CH, and, even though I have LPA for Health and Welfare, that only comes into play if and when she is deemed to have lost capacity.
  11. camkam

    camkam Registered User

    Jul 20, 2015
    Similar problem

    Hi I can sympathise with you, my Mum is having her memory clinic assessment on Tuesday and she went ballistic when the appointment arrived, she accused me of arranging it behind her back, there's nothing wrong with her why does she have to do this, she knew nothing about it etc. etc. She was there when her GP said she was going to refer Mum to the clinic but Mum has forgotten, as she does with everything. It's damaging our relationship too, because I get angry with her because she's deaf and refuses to wear her hearing aids but it really does try your patience when the conversation loop keeps going around and around again. I live 200 miles away, she is in her two-bedroomed house and flatly refuses to move from that house. I've almost resigned myself to the fact that at some time in the future she will become ill or will fall and be admitted to hospital, and if she can no longer care for herself at home she will be sent to a care home and the problem will be resolved. I'm in the process of applying for LPAs for both health and finance but again Mum thinks she can deal with everything. SS can do nothing but provide a GPR tracking bracelet in case she wanders out (which she doesn't!) and she would forget to wear it anyway.
  12. piph

    piph Registered User

    Feb 4, 2013
    Mine's exactly the same, although she does't get cross about appointments - I just tell her we are going and she accepts it. And the hearing aids! Well, Mum has one for each ear, but doesn't wear them as she says there is nobody to listen too. I'm not even sure where she'd hidden them! The telly is kept at high decibels, I'm sure it can be heard down the road! The daft thing about it is that Mum used to be a Hearing Aid consultant, and used to get really cross with the 'old dears' who wouldn't wear theirs all the time!
  13. ITBookworm

    ITBookworm Registered User

    Oct 26, 2011
    She can actually :(:(:( It maybe isn't healthy but she can survive. FIL survived on marmalade sandwiches, sweets and tea for a number of months because that was all he could make himself by that point. He totally refused meals on wheels and wouldn't let the carers coming in even heat soup for him. We made him a hot meal once a week when we were able to visit but that was all he would accept.

    It wasn't until he became incontinent and unstable on his feet and therefore had to go into a home that we were able to resolve things. As Quilty mentioned with her Mum once in a home he was perfectly happy to take whatever food was served :rolleyes:
  14. looviloo

    looviloo Registered User

    May 3, 2015
    Sorry to read about what your going through - I can't offer solutions but I can sympathize :-(. My dad move into a care home a couple of months ago following a fall, and despite complaining that he has no appetite eats pretty much everything put in front of him. I think it's partly due to the good quality of the food there, and partly because he's now eating with other people.

    I'm another that thinks it's terrible we have to reach a crisis before anything can be done. Perhaps backing off a bit would be best for your own well-being, if only for a short while?
  15. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Oh piph, I do sympathise :( I too have been told by mum's GP that all we can do is wait for a crisis - not a fall, she's already having those - but a fall that results in a fracture. Well, not even that actually, she's already fractured her elbow but that's not enough, it seems. The crisis has to be life threatening, not just painful and unpleasant.....Really I can hardly believe this, even as I'm typing it.

    Hubby has insisted we go away for a couple of days, which has been great. But already we've had a call that woke me at 7am because the carers were worried mum wouldn't take her meds. And today, in the interval while we were at the theatre, the carers texted me to say they were worried mum has hardly eaten today. I certainly can't fault the agency for keeping in touch. I have worked hard to get us operating as a team, but it can have its downsides.

    Anyway, I'm so sorry to hear about your mum. I look forward to catching up when I get home :)

    Lindy xx
  16. piph

    piph Registered User

    Feb 4, 2013
    Another problem.....

    Another problem reared it's head today. As if I needed proof that Mum wasn't eating, I had a call from the company that supplies her meals for the freezer, to say that the freezer was overstocked and they could barely get the meals she had ordered into it. When they call once a fortnight for her order, she is obviously not checking before she says 'Oh just bring me what I had last time'. So now I've spoken to her main carer and asked her to check every week on a Monday whether she needs more, and I think I'll ask the company to stop phoning her and call me instead.

    While we were on the phone, she said that Mum hasn't allowed her to take her out for ages, stating that she feels too unsteady on her feet to go out (news to me :rolleyes: she manages to go to Age UK okay on a Wednesday), so the carer has been doing her shopping for her. She also told me that the bungalow absolutely reeks of urine yet again, but Mum wouldn't allow her to empty the bins of used incontinence pads, saying she would do it herself. There is also a lot of dirty washing sitting in two piles on the kitchen worktop (there is only one small worktop in Mum's minute kitchen, and food is prepared on it! :eek:), and offered to put it in the machine for Mum - she got 'the look', as if to say 'don't you dare!' so backed off. Apparently, it's been there for 3 days!

    I'm just tearing my hair out now - I really don't want to confront Mum about all this again - I'm getting scared that I'll just lose it totally, and end up alienating her completely.
  17. skaface

    skaface Registered User

    Jul 18, 2011
    #17 skaface, Jul 24, 2015
    Last edited: Jul 24, 2015
    My mum was just living on sweet biscuits, ice cream, Mullerice and mini apple pies for months until Social Services got involved and I started buying her M&S ready meals for the freezer - mum refused Wiltshire Farm Foods meals after I got her a brochure, and her Social Worker said "I don't blame her, they aren't very appetising, try M&S, so I did. So now I do two shops, one at Sainsbury's for the main stuff and M&S for the ready meals. Her freezer is stuffed full of ready meals and ice cream now so I'm not getting more until it's emptied a bit!

    I also felt it wasn't healthy for her, especially as she doesn't do ANY exercise, and now her mobility is so poor she can't. Her diet is much better now.

    I've also found horribly stale biscuits squirrelled away around her house - all soft and horrible, yuck!

    Also, she had a magnetic shopping list attached to her fridge which she has now hidden because she thinks the carers and I are passing notes about her to and fro behind her back. So I've bought her a new one and told her it's mine and she's not to touch it. It's only for the carers to let me know if they need me to buy anything for her anyway.

    Mum doesn't appear to go in her kitchen much except if I am in there with a carer and we are chatting, she comes in to make sure we aren't talking about her. And I've also found that mugs have been put away without being washed up. So I can put washing in the machine without her leaving it lying around - she tends not to anyway and I have to go hunting for soiled underwear and clothing.

    I've also had the calls to say she's not eaten or drunk anything in 24 hours so I had to go and have a very blunt conversation with her about what happens to 86 year old women in poor health who don't eat or drink in this hot weather, I know that's not the way to handle dementia patients but I had to eventually stand over her while she ate and drank something.

    I'm past the fear of alienating her - if I do make her angry over anything I know that she's forgotten it by the time I next see her. A couple of weeks ago she had diarrhoea and was trailing it through the house - the carers called saying she needed a doctor so I went over, and mum insisted she didn't need a doctor - I had to say "no, this time there's no argument, you're getting the doctor!" and she accepted that, she had to, I wasn't going to have that on my conscience if she fell really ill.
  18. jannie54

    jannie54 Registered User

    Jun 29, 2015
    Need help and advice

    Hi Everyone

    My 89 year old Mum has been diagnosed with mixed dementia..and doesn't understand or believe anything is wrong..she feels all the doctors do not know her and that myself, my sister and my brother are being horrible..
    she refused to have a CT scan and take any medication
    The social services have phoned to arrange a care assessment and she just puts the phone down on them saying she doesn't need any help and the district nurse came around to do a bladder scan because incontinent and she refused to let them in.

    She lives with her partner who is 90 years old and their health and welfare is a worrying issue..she will not accept any help from us and refuses a care assessment..she believes she is doing everything in the home but she is doing nothing..the place is very dirty, the laundry is piling up, they are both losing weight because not eating properly..she is incontinent, but forgetting to wear pads, not changing her clothes or washing's horrible to say but she smells and so does the home..we have tried every way possible to help her but she screams at us to get out and at present will not even talk to us because we tried to explain she definitely needs assistance..her partner tries to tell her we are right, that they both need care and assistance but she just threatens him that he will have to pack his bags and leave if he agrees with us rather than is very tough on him at 90 years old and very frustrating and worrying for us.

    I just need as much help and advice as possible, because I do not know which way to turn
  19. Long-Suffering

    Long-Suffering Registered User

    Jul 6, 2015
    Hi Jannie,

    Sounds like a nightmare. Poor you. Hmm. It sounds like your mum's partner is still in possession of his mental faculties and he accepts that they need care. It's a long shot, but you could start off by focusing on him and his care and that might start the ball rolling. If you and her partner agree that he needs care, then you could say to her, okay, you aren't going to force her to seek any help or treatment, but he needs it. Would she try to block him getting care just for himself? If she doesn't, and you can manage to get carers coming in to see him, then once they have their foot in the door, your mum might come round to the idea.

    I dunno if that would work, but it's the only non-confrontational approach I can think of. If that fails, I guess you might be forced to take more drastic action. I don't know if your mum would qualify for sectioning or if she did, if you would consider that. Hopefully someone else has some ideas.

    Good luck!


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