1. Q&A: Looking after yourself as a carer - Friday 25 January, 3-4pm

    As a carer for a person living with dementia, the needs of that person will often come before your own, and this can mean that you don't always look after yourself.

    However, it's important for both you and the person you care for. But how do you do that properly?

    Our next expert Q&A will be on looking after yourself as a carer. It will be hosted by Angelo from our Knowledge Services team, who focuses on wellbeing. He'll be answering your questions on Friday 25 January 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.

Getting help for my mother

Discussion in 'Memory concerns and seeking a diagnosis' started by Sarasa, Apr 14, 2018.

  1. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    Thanks Canary. I'm wondering what to do as a next step. Apparently my mother called on the neighbours this morning wearing just a bath towel to tell them to stop turning on her bathroom heater.
    I've been wondering about whether to ask the neighborus to contact Social Services. They have video evidence of my mum's behaviour, but then I think that is unfair and it should be me contacting SS. I know they will try to wriggle out of doing anything, services have been cut to the bone in mum's borough and she would be self-funding, but something needs to happen fairly soon, and I'd prefer it if it was something that let mum keep her dignity.
     
  2. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    This must be so difficult for your family.
    I suspect that, as you fear, SS would do very little. They can do an assessment, but as your mum is self-funding they will expect you to arrange care. In my experience, finding carers for my mother was straightforward, but I suspect the difficult bit would be getting your mother to accept them coming in? And of course she would still have a lot of time on her own when she could get into trouble. Hopefully the GP will have noted your concerns and be able to take some action next week. So frustrating when all around her can see the problems and you struggle to get the process started. If you do want to contact SS, I've seen it suggested on the forums that you email them as that leaves a paper trail, which would also be easier for you.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    7,975
    Female
    South coast
    I think Social Services take it a bit more seriously when it is someone else rather than the family contacting with problems.
    Its certainly true, though that if you are self-funding they will expect you to make the arrangements.

    Mum wouldnt accept any help at all either and I had to wait until there was a crisis before mum got the care she needed.
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    You may be right Canary that they will take it more seriously if a neighbour reports it, I just wonder what help they will actually provide (I didn't have a lot of luck with SS for my mum).

    It can be so difficult when the PWD is resistant to help. My gran was was never formally diagnosed but by the time she was 91 it was evident she had dementia. The only way she accepted daily carers was when we told her they were really for my grandfather, who had mobility issues - and even then she would sometimes slam the door in the carer's face.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    7,975
    Female
    South coast
    If the PWD refuses carers/day care etc it will have to come to a crisis @Sirena.
    In mums case she had a TIA and ended up in hospital malnourished and dehydrated. She went straight from there to a care home and stayed there for the rest of her life. I have heard of people who constantly go walkabout and the police have to keep bringing them home and this is the trigger for them moving into residential care. If things get very bad and the PWD refuses everything they can be sectioned for self-neglect. The trigger seems to be that they are a danger to themselves or others. If neighbours complain it adds weight to them being a danger to themselves.

    Its dreadful that it has to get to that stage before SS will do anything, but that is the way it is.
     
  6. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    I had an afternoon of phone calls from mum. One fairly hysterical one about not being able to turn off the heater in the bathroom and saying how horrible I was as I won't have her come and stay with me. The second was all sweetness and light. I think she scares herself that I'll take her threats about cutting contact with me seriously.
    Then she phoned a third time. She had called the police about the heater and two nice policemen came and sorted it. They talked to mum about her problem with the neighbours and then went away to talk to them. According to mum they came back and said the neighbours had been committing 'hate crimes' against mum and she mustn't upset herself by crying on their doorstep. The second statement I can believe, the first one I cannot. I'm assuming the policemen just made soothing noises when mum talked about 'hate crimes' and she has taken that as agreement with her views. I'm hoping the police contact someone in the family and we can find out actually what was really said. I' d be horrified if they thought for one second the neighbours really were coming in and doing the things mum claims they are.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    @canary I was lucky (if that's the right word!) that my mother recognised she needed help so was happy to accept carers, otherwise she would probably have ended up in a similar crisis situation to your mother.

    @Sarasa, in the relatively 'early' days my mother went shopping and got lost on her own high street, she asked for help in a shop, they gave her a cup of tea and called 999. I am not sure if the police turned up, I was contacted by a paramedic who took my mother home. They did contact SS, but all SS did was call to inform me - no offer of support. This was before she had carers - she had been assessed just a few weeks earlier by SS who said she needed no help.

    There's a thread today on the 'I care for a PWD' board where a member said that even neighbours contacting SS had no effect, she finally got 'action' by contacting her councillor/MP, so that may be an option.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    7,975
    Female
    South coast
    It makes you wonder what actually has to happen before SS acknowledge that they need help :mad::(
     
  9. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    Thanks @Sirena and @canary, I think we just need to wait for the crisis. I've started an email for SS but it sounds totally pathetic. When I contacted them five years ago about the time mum's eyesight tarted to go (it's much worse now) all they did was send me the contact details of a local cleanign company.
    Mum phoned about an hour ago to say she doesn't feel well. She had her little girl voice on, which means she'd like me to go over there and see her. I'm feeling a bit mean that I didn't offer but said see how she feels in an hour or two. Mum thinks she might not have cooked her dinner properly last night, though it doesn't sound like food poisoning and she carried some (to her) heavy things back fromt he shop yesterday, which always makes her think she may have strained herself. I resisited saying that's why you need someone to come in and help you, because I know what the answer will be.
     
  10. try again

    try again Registered User

    Jun 21, 2018
    264
    Oh dear, its so blooming stressful when they don't help themselves by accepting help! my mum says she worries i'm getting stressed over her but is adamant that she will not get help as her money "is for us". Luckily she does not need help inside the house yet but i am dreading the day when she does. She's already refusing my suggestion we go to her local church "over 50" social group for a change. Currently i see her twice a week and its normally for about 7 hours each time but I think i may start dropping that because it is so boring when we don't do anything apart from the appointments.
    awaiting memory clinic but i am dreading the future.
     
  11. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    @try again - I think we are in very similar situations. I tend to only see mum for an hour or two as as you say it is very boring. I'm over there longer if its appointments but usually I read her post (she is partially sighted), help take her rubbish down and we go out for a coffee.
    Mum would really enjoy having someone else in if I could acutally persaude her, she loves to chat and some of her stories, if you haven't heard them counteless times, are very entertaining.There would be the worry that she thought they'd joined the neighbours in stealing her stuff, but I think it is worth the risk if she'd agree to it. Maybe I'll mention it when we go to see the GP on Wednesday and hope he pitches in with agreeing with me. I think mum might pay more attention to him.
    I think the 'money for us' might be there in the background, but my brother and I both agree we'd rather she had a comfortable life now, than we inherited it all.
     
  12. try again

    try again Registered User

    Jun 21, 2018
    264
    Absolutely wish she'd spend it all on herself!
    You mum sounds a bit more social than mine. She will happily strike up a conversation when we are out (appointments and she sometimes comes shopping with me) but is scared of doing anything else. she doesn't like cafes so going out for coffee or a bit to eat is a no go.
     
  13. Duggies-girl

    Duggies-girl Registered User

    Sep 6, 2017
    1,176
    Oh yes the boredom of it all. Twice a day I am at dads and sometimes I spend the evening with him. Same stories, same boring TV programmes, same conversations but what do you do. I don't know, sometimes I feel guilty for being so bored but I can't help it because it is boring and that's a fact.

    We are all in the same boat I suppose but sometimes I want to jump ship.
     
  14. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    @Sarasa I will keep fingers crossed you can get some progress at the doctor's appointment this week.

    The combination of "there's nothing wrong with me" and "the money's for you" is huge obstacle in persuading them to accept help.

    My mother, now in a care home with late mid-stage dementia, still occasionally expresses concerns about money, generally on the theme that she hasn't got any/doesn't know how she's going to pay to stay there (she does have money but I just tell her she doesn't have to pay). As I've been dealing with her finances via LPA for nearly 3 years I have been able to arrange care without her having any input.
     
  15. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    Yesterday I phoned mum up to remind her that the on-line grocery order that I'd done for her was arriving this morning. She was in a flap as she had tried to activate her new bank card (she cancelled the last one after she 'lost' it). The bank confused her about going on about POA, the upshot of it all was she couldn't find the card or her passport that she'd taken with her. I made soothing noises, suggesting maybe she had left them in the bank (that's what had happened to the 'lost' card) and things seemed OK. She phoned back a few minutes later to say she'd found them.
    Late evening she phoned and my husband answered. She was worried as she needs to pick up her regular prescription today and she wanted to do it at the same time the grocery order is arriving. Husbands assurances that none of her medication is time critical didn't work and in the end he put the phone down.
    My brother and I message each other when we've had chats with mum so we both know what's happening. I got a load of soothing messages about just agreeing and moving on when I messaged him, which didn't really help. This morning I looked at my phone. Brother was contacted later by neighbour. Mum had been harrassing them all day and they were pretty distraught. He told neighbours to call the police and that we would back them up and then spent fifteen minutes trying to persaude mum not to contact them.
    Back to the doctor's tomorrow. I hope we can get something sorted.
     
  16. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    Well doctor's vist went as well as I hoped. Doctor listened to mum going on about the neighbours and said he was refering her to the metal health team for a home visit. I assume this is the memory clinic people but he didn't want to use the word 'memory' to her. Mum seems reasonably OK with it all, but we'll see what happens when the appointment comes through. I asked them to contact my brother about the appointment in case mum forgets or decides to turn them down. The doctor also told her she couldn't refuse the visit which is good as she does tend to pay attention to him.
    Yesterday mum phoned and said where was I as she had seen me coming out of the neighbours flat. I'd been fifteen miles away in my own bit of London all day. :confused:
     
  17. Sirena

    Sirena Registered User

    Feb 27, 2018
    608
    Female
    Good news that the doctor has taken this seriously and is getting the ball rolling, and is sending appointments via your brother. Initially the memory clinic sent appointment letters only to my mother, which wasn't very helpful as I found out about them too late.

    The visit could be by the Community Psychiatric Nurse, the CPN was the first person who assessed my mother at the Memory Clinic, and also subsequently did home visits.

    Amazing how you can be in two places at once, Sarasa!
     
  18. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    I've just had a phone call from the police. Mum has phoned them saying the neighbours have been in and messed up her kitchen. My brother was there on Saturday doing a few DIY jobs. I think she's forgotten he changed her kitchen cupboards round a bit.
    Mum was obviously convincing. The PC could see that the things mum was saying didn't add up, but wasn't sure how much was truth and how much was confabulations. I think she was a bit surprised when I told her it was all in mum's imagination and the neighbours are not doing any of the things mum says they are. Well they may be getting cross with her, but when you have someone ringing your doorbell all day I think you are entitled to be annoyed.
     
  19. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    216
    #79 Sarasa, Aug 25, 2018
    Last edited: Aug 25, 2018
    I had another call from the police yesterday. Mum had called them because she thought her jewellery box had been taken by the neighbours. The policeman was aware of mums problems as he'd found a message from the mental health team on her answer machine. The box was where it should have been.
    The mental health team also phoned yesterday. They'd contacted mum and she said she didn't need any help. The man was going to refer back to his manager and try and set up an appointment when I can be there. I got his name but not his phone number or email address though he now has a raft of my contact details. I hope he gets back to me, otherwise I'm going to have to try and track him down. My fear is that they won't want to do anything as mum will be deemed to have the capacity to say no. I hope that isn't the case.
    As for mum herself. I've seen her once and had a couple of phone calls and she has been very muddled but very sweet, probably because I say things such as 'how odd' when she tells me the neighbour's came in, took a pie out of the fridge and put it on a chair. My husband thinks I should say every time 'it wasn't the neighbour's, it was you' but I know that won't work.
     
  20. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    583
    I absolutely feel for you . It's so frustrating. I agree that telling your mother that it isn't the neighbours won't help. It will just cause her to dig her heels in even more. No magic answer I'm afraid
     

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