1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August 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.

  1. Elle3

    Elle3 Registered User

    Jun 30, 2016
    My apologies now for this very long post, but I really need to get this off my chest as it's been really stressing me out and I just can't get any help.

    It's been a couple of weeks or so since I last visited the forum, dad has been a bit of a handful and is constantly now calling me and expecting me to visit him each day (dad is 80, he is currently un-diagnosed, we are still waiting over a month since the initial memory clinic assessment (scored less than 10) to see the consultant and he lives alone).

    Every week now, on Monday's, Wednesday, Fridays I spend the day with him and take him out for lunch and he comes to my home on Saturdays and spends the day with us. The days I visit him, I do some housework and collect his washing and make sure he showers etc). But he no longer has any concept of time, I always call him the night before and tell him I will see him in the morning. But last week I kept getting phone calls from him at 2am asking if I'm on my way, or at 6.30am asking the same thing, I'm currently shattered due to lots of broken sleep. He's also been calling me on the days I can't visit him and he asks if I'm coming or on my way and he makes me feel very guilty when I say I can't, but I really need a break and to catch up on my own chores etc.

    But as I said, this past week has been very bad though. I discovered on Monday that the savings (approx £8K) he had hidden in very good hiding places in his house have all gone. I know the money was there the Monday before as I saw it, but on the following Thursday I got a phone call from him at 6am saying that men were in his house, going through all his things and they've told him the house isn't his anymore and he has to get out and he can't take anything with him, he said I've got my money and I'm about the leave, but I don't know where to go. I asked if I could speak to these people but he made excuses about them being busy etc but really there was no-one there. I still got up and went down there straight away to try and put his mind at rest, all his doors were still locked when I arrived. I think he had watched a programme like 'the bailiffs are coming' and he had had a dream about it and woke and thought it was all real. When I asked about the money he said he had put it all back (unfortunately I did not check). Then on Thursday night I spoke to dad around 9pm and he seemed stressed about something he had received in the post and started saying again they were taking it all off him and that he had no money to pay it. This time I figured and had it confirmed that he had just received his council tax bill, I told him not to worry and I would be down first thing Friday morning to sort it out for him, last year the council tax bill was a problem as he threw it away so I knew I needed to get it off him asap.

    8am the next morning when I arrived there was no obvious sign of the bill, but he was still referring to not having any money to pay for it, I eventually found the bill hidden away in a drawer upstairs. So I took the bill, told him I would sort it and usually he's happy to accept this and then forgets all about it. However this time he just wouldn't let it go, I couldn't distract him and when I thought I had, he went back to talking about it again and saying he had to get money to pay it. By the time I left, I thought things were OK.

    Well they weren't. Saturday morning 8am dad calls and starts telling me a very confusing tale and laughing about it all, I really thought this must be a dream so didn't really take that much notice and it made no sense anyway. However around 10am my husbands mobile rang and it was my dads neighbour and basically he told him, my dad had gone out at some point on Friday night and when he came back he couldn't get back into his house (this was around 1am) he had taken out the wrong keys, so he had knocked on another neighbours door because her lights were on, she couldn't help but got his other neighbour involved who called the Police and they broke into his house for him.

    From what we can understand my dad couldn't sleep for stressing about this bill, so he had got all of his money and decided to go to this place (we don't know where) to pay it or to get a job?? But then my dad tells us a man has been in his house twice and has taken all his money, but cant tell us who this is or why he let him in, one minute he says he let him in, next he says he came in whilst he was asleep and lots of other reasons he comes up with. We have no idea what to believe and we really can't call the Police as we have no evidence apart from missing money and no clear idea of what has happened. The money could very well still be in his house, but hidden somewhere we just can't find. This has happened before with keys, wallets etc, then they just turn up a week or two later.

    This has all happened in the space of a week and it was only 2 weeks ago he had an occupational health assessment to see if he was OK to live at home and he passed that no problem. This week now the money has gone, things seem to have settled down again and he is more like his normal (memory impaired etc) self again, although he has started this week asking can we go and get some more money (he has become over the last year or two money obsessed and likes to feel and count it, like its a comfort blanket for him). But this is a very much resounding NO from me.

    I'm not really expecting any replies, as I said at the beginning, I just needed to off-load, hopefully to people who can understand the frustration and what I am going through with my dad. Some days/weeks I think I could quite easily shoot him!!

    Take care.
  2. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    Hi Elle. This all must be very worrying for you.
    It might possibly be that your Dad has a UTI or some other infection - they can cause confusion and distress.
    Keep chasing for furtheration of your Dad's diagnosis.
    Also, I think you're entitled to request an assessment of his needs (although this may be dependant on a diagnosis, not sure of the system in the UK). I'm sure others will be able to advise. He's already wandering and getting locked out so that makes him vulnerable.
    Have you got POA sorted?
  3. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016

    This is sounding as though it has all got too much for you.

    I am going to ask a blunt question. Why is your Dad keeping, was keeping, £8K in the house? Should you locate it it sounds like time for the bank, surely?

    You sound exhausted. The following organisations will give you support and will guide you as to how best to get your Dad help. Write down some of the things that have been happening. It can be a wake up call for you doing this exercise as well.

    Alzheimer's Society

    A pool of sanity and a great source of local information and how to get things moving. Scroll down the page and put in your post code.


    Admiral Nurses


    Sorry to say, it does sound as though you have reached crisis point.

    Hope you get some help sorted.
  4. Essie

    Essie Registered User

    Feb 11, 2015
    Hello Elle

    Sorry you've had such an awful week with your poor Dad, as Knickers has said it does sound like it has all got too much to cope with very quickly.

    I agree with HillyBilly that it could well be a UTI - could you get a urine sample and take it to your Dad's GP for testing?

    Have you spoken to Adult Social Services about your Dad? If not, or if nothing has been arranged by them yet then contact them and explain that he is a 'vulnerable adult' who needs support and care - the duty of care does rest with the LA although obviously if Dad has sufficient funds there will be a charge for the care provided. Alternatively you could set up carers yourself through an agency to come in to see Dad on the days you are not currently visiting.

    If it is a UTI that has caused Dad to deteriorate so much it may be that once that has been treated things can become more manageable again but if things continue at this current level it would suggest that a much higher level of support and care is needed to keep Dad safe and well.

    Poor Dad and poor you :( Big, big hugs Elle.
  5. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Hi HillyBilly, thank you for taking the time to read my post and respond, I wasn't really expecting anything, it just felt good to off-load.

    I thought of a UTI so I got him checked out, but that was OK. I just think the programme he has been watching and the council tax bill just triggered all his insecurities. He loves his home and has always been very protective of it and he also gets stressed and worried about bills and feels the need to deal with them immediately, something again which he has always done. (Yes I do have a POA but only for his finances). So I have been trying my best to get all his bills and statements online so I can deal with them without him seeing them but I was unable to do this for the council tax bill and his pension letters. Now he thinks this is all dealt with, things have settled back down to 'normal' again this week.

    I am chasing to see if I can get things to move a bit quicker regarding diagnosis.

  6. sadjane

    sadjane Registered User

    Nov 3, 2016
    The Herbert Protocol

    Hi Elle
    I'm so sorry to read about the awful situation you and your Dad are in - you must be at your wits end. Have you registered your dad with your local police force under the Herbert Protocol in case he goes missing? Here's a link to Warwickshire police - I don't know where you live but I believe all the English police forces operate the protocol.
    Thinking of you, Jane
  7. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    Hi Elle.

    Should you be considering registering your Dad under the Herbert protocol I am going to suggest reading Wozzi's thread - 'Is now the time'

    If your Dad continues to wander it really is time to consider a more formal arrangement. If you do you research into local care homes you will have a voice should SS (Social Services) decide your dad needs to move. Wandering round town carrying a few thousand pounds is not a good recipe.

    As much as your Dad loves his home his safety comes into play at some stage and it is beginning to sound unsafe and, frankly, worrisome.
  8. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    Do you have power of attorney? My MIL was getting very stressed over her post, even junk mail, and her social worker asked my OH to get MIL's post redirected - it was quite easy to do with the LPA and a form from the post office, the only problem is that it can only last for up to two years.

    Actually, looking at your first post you don't mention an LPA - if it is early days with your dad, you absolutely have to get that organised, it is so much better to do it and have it available when it is needed.
  9. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Hi, Oh Knickers, thanks for reading and responding as I said I wasn't really expecting replies, so thank you.

    Regarding the money, over the past few years he has been taking money from the bank on a regular basis (he doesn't trust them) and hiding it in his house, I didn't really know about this until about a year or so ago. Even though I wasn't happy about this and tried my best to persuade him to put it back in the bank, he wouldn't budge and would just go and get more money. I put a stop to this the middle of last year using my POA with the bank, so if he really wants some money, he is only allowed to withdraw up to £100 in one week (which he was disgusted about and thought the bank was keeping his money from him and he kicked off in the bank demanding all of his money, they had to call me to calm him down). So occasionally I would have to go with him, after pestering me continuously for days, weeks to take him to the bank and withdraw a larger amount, he would wear me down so I would take him, then he would calm down and forget about it, until he would start asking to get money again about a month or 2 later. He actually only associated the money in his house has his, the money in the bank he thought was the banks and if they gave him any, it was like he was stealing it from them.

    There was originally a lot more than the £8K, but using excuses to gain access to it, I managed to take some of this (I thought without him knowing) and put it back in the bank. However, he was aware that there wasn't as much in there as there used to be and kept saying this and that someone was taking it (it made me feel guilty at the time, but now this recent thing has happened not so much), this however, only made him want to go back to the bank and take even more out, it was becoming a viscous circle. He then chose to hide his money in a totally different hiding place which was really not that accessible, so I thought he might actually forget about it, but no he still felt the need to mess with it and count it.

    I know it's not good that all that money has gone, either stolen, given away, lost or just hidden, but at least I no longer have to worry about it and my dad is no longer obsessing about it being in his house and he has been told in no uncertain terms he will not be getting anymore to hide away. He has totally calmed down again this week and is more relaxed and almost normal again. People would think I was making it up what happened last week and how he was compared to this week, so no longer a crisis.

    Take care.

    I already keep a daily diary of everything that happens, just so I can look back and keep track of things, this does help when speaking to people.
  10. carpe diem

    carpe diem Registered User

    Nov 16, 2011
    Have you thought about installing a camera. You can also get a device which sends you a text when the front door is opened, the time will be recorded and then look back at the camera footage. Of course that will only help for the future, there's no way of finding out what happened in the past.
    I would also advise you get power of attorney and make sure there's no more cash in the house.
    Phone the memory clinic and social services and chase them about getting a diagnosis. They're all stretched and won't rush unless you keep phoning saying dad is vulnerable. The phrases vulnerable adult and legal responsibility often get results. Email them and phone the ombudsman if they delay.
    You shouldn't pay council tax after diagnosis.
  11. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016

    Well done you. Well done in standing your ground with your dad and the banking issues. Well done in being there to help him. And especially well done in having already started a diary of events.

    It does sound as though money is a real obsession for him.

    Do use the contact numbers provided as the organisations will help you in what you need to do.

    It is tough. It also sounds as though you feel disloyal by going down this route. However, as has been pointed out, your dad is very vulnerable now and not really in full control of his faculties. Time to get him into a safer environment.

    None of it will be easy but at least he will be safe.

    Bless you.
    Take care.
  12. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    Does your Dad do any shopping or payments please? If he doesn't, would he notice the difference between real £5 - £50 notes and fake money (or foreign money that "looks like" real money?

    If you think fake money might solve the problem please check the idea with the local police and shopkeepers first!
  13. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Hi Alsoconfused, he does do some of his own shopping, just locally to buy bread and milk etc and he pays his own way when we go out for lunch. I doubt I could kid him with fake money anyway, he is still quite switched on where that is concerned, he can even tell if he has been given a fake coin in his change. I'm trying to be a lot stricter with him now and I'm not allowing him to have too much in his wallet and I've told him he's not getting any more money until he has spent what is in his wallet, I wouldn't put it past him though to try hiding it just so I have to give him some more, but I won't be falling for that.

    Take care.
  14. Elle3

    Elle3 Registered User

    Jun 30, 2016
    I do feel very disloyal as most of the time he copes well at home, it's just these 'blips' that make me feel like OMG what is happening, he needs locking up for his own safety and my sanity, but then he surprises me and things are OK again.

    The professionals; the GP, memory clinic and occupational health were all thinking they might have to take him away based on the initial assessments, as his main problem is with communication and not being able to find the right words and following and understanding instructions. But as long as he is doing his own routine and nothing rocks the boat, then all is fine, he manages to make himself meals, do his housework, wash and shave every day and go for long walks in his local area. Also, up until a month or so ago he was going on daily trips on the train as this has been part of his every day routine for the past 6-7 years, however due to some rail issues and changes this interfered with his routine and started to cause problems and he ended up on the wrong train and wrong destination and was brought home by the Transport Police, they thought he was vulnerable as he couldn't tell them where he wanted to go, but if they had left him to his own devices he would have eventually got home OK. He has since mislaid his travel pass so I've had to tell a few white lies to keep him away, however, he constantly asks when can he start going on the trains again and I just tell him they are still not working. I think this has lead to boredom and when my dad is bored that's when trouble starts and things go missing or moved around in his house. I can't win really, lol!

    I am my dads registered carer, so I have someone to talk to there and I have a couple of times spoken to the Alzheimer's team for advice and I have a friend who is a social worker and has given me some good advice but that is mostly dependent on a diagnosis, which I'm still waiting for.

  15. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Hi Carpe diem

    We have considered it and door monitors, but not sure how we can go about getting this done as if he sees it being done he will object and just rip them out. I know there are lots of things that can be done, but our biggest obstacle is my dad he is very wary of anything new and observant so we can't get anything past him. I do have a POA so I'm onto the money thing and being very strict with him now, it is like dealing with a child sometimes and I'm chasing up getting him diagnosed.

    Many thanks.
  16. saskia

    saskia Registered User

    Aug 10, 2015
    North Essex
    Oh elle3 hunni

    This is such similar reading to my mums story......This may be heartbreaking what i am about to say, however, reality now comes to play.

    Mum was sectioned nearly 3 weeks ago. Daily delusions about her dead dog, people breaking into her house, stories about ' people' being in the house night & day, stealing things, money going missing etc etc......As much as i tried to go along with it, make excuses as mum was washing, dressing, putting make up on, working her sky remote better than me!

    The phone calls that started during the day, a few, then every few hours, every hour, every 15 mins, until we had to unplug our phones at night just to sleep.....Until we had 3 knocks on the door at all hours from the police as mum was wandering looking for her dogs.........

    Social services then we're on board ( as police had involved them) mums gp was concerned & memory assesments were not attended / stormed out of......

    I can't say the last 3 weeks have been easier, truth- it's been hell. Mum is in a secure hospital, nice enough, but is exactly what it is. She is in denial every day, tears when we see her and today she thought she was coming home, only to attend a review & she is headed for a section 3....

    & Mum continues to ' self care' . i.e. she doesn't need help washing dressing , knows who we are, but is no longer deemed safe to live on her own.

    I'm sorry if this is hard to read, i pray your dad gets some help, sound like you both need an intervention from ss / carers, something, as i think deep down you know this can't continue.

    As awful as it is mum being sectioned, i know she is safe. & That at the moment is a stage i never thought we would be at.

    Please involve all you can, police reports, social workers , GP, call your local dementia team daily....

    It's so hard, none of us would wish this on our worst enemy........

    So sorry once again if I've been too honest your story just sounds so similar to ours.

    Thinking of you & your dad xxx

    Sas x
  17. JABone60

    JABone60 Registered User

    Mar 23, 2017
    Hi Elle3 I have only just joined the forum as I wanted to connect with other carers going through the same thing. Although most days for me are a bad day now, I tried to find some way of expressing just how bad it was. I had tried telling people, family friends but I just couldn't express or get across just how I really felt so I wrote this poem. I hope that this connects with other carers, so that we know we are not alone.

    Just hearing that you have dementia
    Must be scary and hard to accept
    My mum has had this diagnosis
    And I know she has wept and has wept
    She thinks the doctors were wrong
    and blames me and my sister for this
    We were asked what we noticed was different
    and mum gave us a look of disgust
    We were just being honest to help her
    So she got the right treatment and care
    But in mums eyes we were cruel and betrayed her
    This was hurtful and seemed unfair
    We've tried and tried explaining
    But logic no more comes through
    She gets very cross very quickly
    Then blames us for all that we do
    I don't mind that mum can't find things
    I don't mind that mum quite often forgets
    I can deal with this side of dementia
    No matter how often this gets
    Mum knows that something is changing
    And looks to us to make it okay
    But then help is met with resistance
    And we battle with this every day
    I can't suggest things to help her
    as I'm then telling her what to decide
    I can't offer to do things for her
    As I'm then treating her like a child
    If I try to explain why I'm helping
    She says she can do it herself
    If I try to help her find things
    She says I don't trust that she's telling the truth
    If we speak to try to resolve things
    This can go on and on
    But Because I see it different
    I'm saying she is always wrong
    None of these words have I spoken
    I have never told her so
    But her logic and reasoning diminished
    She thinks I am having a go
    If I go with her to the doctors
    She explains to him all her ills
    But she says I did the talking
    And she couldn't express how she feels
    I don't say a word in the doctors
    Unless she asks me too
    But when I try to explain this
    She says oh I'm wrong it's not you
    She battles to stay independent
    we strive to keep her this way
    But safety is our main priority
    And We worry for her every day.
    I would be failing as a daughter
    If I didn't make sure she was safe
    I just wish she would see this as caring
    And not taking away her life
    She says she hardly sees me
    Yet I'm there for her every day
    Her words are cutting and hurtful
    Why does she treat me this way
    Today's been incredibly hard
    It's upset me to the core
    But nothing can ever change it
    And tomorrow I'll go back for more
    I want her to know I am helping
    I want her to help me help her
    Yet I know this will never happen
    It will only get worse that's for sure
    She is my mum and I love her
    it's a scary life for my mum I know
    I try so hard to reassure her
    But it's met with contempt and woe
    It's not easy for me either
    I can't help but feel beat and rejected
    Mum thinks I'm trying to upset her
    But I just want her to feel protected
    I am scared and worried and worn out
    I am battling this too don't you see
    I can't stop this process from happening
    This is what dementia is like for me
  18. sadjane

    sadjane Registered User

    Nov 3, 2016
    Welcome to the forum JABone60.
    I think your poem hits the nail on the head. I totally identify with the emotions you express and with the behaviour of the pwd, and I found your poem very moving and also very comforting, so thanks. All the best, Jane
  19. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Thank you for this lovely poem JABone60, it brought a tear to my eye as I can totally relate. Apologies for the very late reply, I've not been able to log on for a while. Welcome to the forum. Elle x
  20. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Social Services Visit

    Hi, this is the first time I've been able to log on and catch up since I started this post and responded to a few people. I thought it would be good just to do a little update for anyone that might be interested.

    Following on from the Police being called to help dad get back into his house, they then reported it to Social Services. Social Services contacted dad first but could get no sense from him and then they called me. I spoke to them at length about dad and they agreed to send a Social worker out to see us both. The Social worker visited yesterday and it wasn't at all scary and proved to be very helpful. She explained it is always their first priority to keep the person in their home and get them whatever support they need to keep them safe and healthy. She also told me not to worry about the fact I do not have a POA for his health & wellbeing, I have for his Finances. She explained this is really only useful if they decide dad needs to go into a care home and I object. However she said even without it they would still listen and take into consideration my wishes.

    We have agreed that dad does not need any formal support at present as he manages fairly well on his own, making meals, dressing himself, washing, shaving and keeping his house in good order and I do things like his washing and some back up cleaning as well as visit him or bring him back to our house 5 days a week and the 2 days I can't see him I call him. They are going to install Care Call so they can install the door contacts to monitor him leaving his house as well as installing the 'Just checking' motion sensors for a few weeks to get an idea of his movements around his home.

    I explained to the Social worker that one of the main issues at the moment is that dad constantly talks about people being in his home, I think he actually means people on the TV sometimes but I can't always be certain as I'm not sure I can actually trust him now, not to let someone into his home he doesn't know. So I asked if she could recommend some sort of indoor security system of cameras that would be useful, she mentioned Nest Cam but when I did some research on them, they didn't seem to have good reviews, so if anyone else has any suggestions I'd be most grateful?

    This would also help with the other issue, which is of dad moving/hiding things and then not remembering where he has put them or finding them later and thinking someone has been in his house and moved it. Going back to my original post I can now give you an update regarding the large amount of money my dad seemed to have lost. Well that actually turned up on Tuesday morning, but by Tuesday evening he had lost it again (he couldn't remember where he had put it again), but when I visited yesterday (Wednesday) I actually found it by pure chance in his inside coat pocket hanging on a door. Pretty scary to think he might have gone out with such a large amount of money, so I have removed it without telling dad I have found it (as he would have begged me to keep it) and I have brought it home with me and I am planning to put it back into his bank account. I have to say I am very relieved to have found it. There is still more money and now 2 wallets containing money hidden somewhere in his house, which he finds then loses again from day to day! I can usually never find them so I obviously don't know all his hiding places and when I have seen some of them, things are hidden in very strange places.

    That's about it for now. Hope you all keep well.

    Take care.

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