New to dementia - lots of questions to ask.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Margaret W, Jun 12, 2007.

  1. Lila13

    Lila13 Registered User

    Feb 24, 2006
    Have you and your mother had carers' assessments? A lot of social workers don't seem to know or prefer to ignore the fact that you're entitled to have them. They should not expect you to do things for your gran which will seriously affect your own health.


  2. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    More thanks

    Jennifer, thanks for the point about council tax, I didn't know that.

    I don't mind about paying for care, mum has savings (if she'll let me use them!), that is what they are there for. Or I'd pay as much as I could myself.

    Ashburton, I wouldn't be able to pay if I didn't work. Problem is, mum's idea of savings is that they are not there to be spent, so as long as she is aware she has got them, I'd have to pay out of my own pocket (keeping a record in case of her going into residential care). I felt a bit guilty reading your suggestion that I shouldn't leave mum on her own, but I can't imagine she would want me to spend any more time with her, she has never had any conversation or hobbies to talk about. The hour she spends at our house on a Sunday is 75% silent as I run out of things to say about cleaning and our daughters (apart from repeating myself - which she doesn't notice). She isn't scared of being on her own - but if that happens I'll have to rethink.

    Gill, never heard of the buzzer on the door, what a good idea. But what would SS do if it went off? We have a private company that provides an emergency phone for illness etc (not that she wears the buzzer round the neck, it isn't even in her bedroom but next to the main unit in the living room!).

    Franko, forgotten what you said about bank accounts. I tried explaining bank accounts to mum long before any sign of dementia (thought my dad had told me she was "losing it" before he died). Somebody mentioned forgetting a credit card bill - mum doesn't know what one is. She has a direct debit for her gas service but keeps forgetting to top the account up. Doesn't see why they can't take it out of one of her savings accounts.

    Still on bank accounts, only one gets a decent rate of interest but she isn't bothered, it means nothing to her cos as I said, savings are for saving, so if it got £200 more interest it would just add to the savings. Anyway appointment with bank manager being arranged as we speak.

    But another reason for me not taking over these bills is that it gets her out of the house to pay them. While she can do that safely, of course. I realise I'm only at the beginning of all this, please all be patient. It might seem to you all that I'm worrying about nothing yet.

    The thought of finding all her documents for bills etc is a nightmare. She has them all over the place, can never find anything (never could). I only discovered a couple of months ago that the house insurance was still in dad's name. I assumed she'd have changed that. I told her to. Maybe she was already suffering dementia then in a very mild way. When she paid the house insurance she sent a cheque from the Halifax with no covering letter or anything and couldn't understand why they hadn't sent her a new certificate of insurance.

    Zadok - great idea about blaming the government! I can add the Council, BT, North West Water and British Gas to the list!

    Nebiroth - she's been pointing to empty chairs for months! Even empty beds that she says are slept in (a single bed shared by three men and a woman!).

    Thanks all, you are a great bunch. I suspect I'll need you again.

  3. MJK

    MJK Registered User

    Oct 22, 2004

    Sorry if someone's mentioned this already, but your Mum should be entitiled to Attendance Allowance (it's not means tested).

    My Mum has a lot of the symptoms you describe (she's been diagnosed with AD) and has carers going in checking on medication, helping with meals, checking for problems etc. At the moment it's working ok and I get far fewer calls re lost glasses, hearing-aids etc (always a problem as I live 200 miles away!!). There'll also be services such as meals on wheels, day-centres etc, though I think it varies a lot as to what area you're in.

    As far as medication goes, my Mum has hers supplied weekly in a blister pack with the tablets sealed in separate compartments for each dose (the pharmacist does this). Not fool proof, but does mean you or a carer can check if she's taking them correctly (my Mum nearly always starts the pack on the wrong day so we have to allow for that!!).

    Hope this helps.

  4. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hi MJK

    I thought that attendance allowance could only be claimed if the person was incapable of things like dressing, washing, getting out of bed. Mum can still do all that, but what she wears is rather bizarre. last week she wore a pair of trousers to church. The hems are turned up with rough wool. She wore an old top which was heavily stained with bleach. Not dirty, she isn't at that stage yet, but it had sgnificant bleach stains. When she got back from church (presumably wearing what she thought was her best outfit), she changed her tatty trousers for a skirt that I recall her buying when I was a teenager (40 years ago). She wore the same bleached top and skirt to come to my house for an hour, and when she got home she changed back into the tatty trousers and an even more stained top.

    Thing is, I bought her new clothes for her birthday in March. A lovely turquoise cardigan and white blouse, two lovely jumpers in gorgeous colours, and two pairs of trousers, which I have shortened for her. I have never seen her wear them at all. I wanted to buy her a skirt, but there was nothing that she would like.

    But she still dresses in her old gear and looks dreaful.

    Anyway that is not the point. I'd appreciate further info on attendance allowance if you have it.

  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Here you go


    Important note about attendance allowance: you can claim if you need help to do various things EVEN IF you do not get that help. Also when filling in the forms you need to look at worse case scenario: not the good days, the bad days. You get no credit for being shy about stating your case. For example, if you (or rather your loved one) need help dressing, even if they normally manage to do it on their own although it takes them forever, it should be put down.

    And this is for the council tax (actually briefly glancing at it you look as if you need to be getting AA before making the application: I'd forgotton that bit)

  6. MJK

    MJK Registered User

    Oct 22, 2004
    #26 MJK, Jun 16, 2007
    Last edited: Jun 16, 2007
    My Mum can do all those things too, but still qualified. She's only 70 and is quite fit and able (in some ways). The following link to Help The Aged's website give some info about what particular needs may be covered, how to claim etc.

    Mum gets distressed and confused often so having carers in helps to prevent that . Also, they help her to prepare meals, ensure old food is thrown out, help with cleaning, prompt her re medication and basically keep an eye on her. None of the family live close so it is reassuring for us to have someone checking on her.

    Honestly you could be talking about my Mum! She used to take a pride in being well turned out, but now she'll go to Church in clothes that are mismatched, stained, with buttons missing etc. When I'm with her I'll try to (tactfully) suggest she might want to wear something else and she then gets quite huffy about it. I tended to assume that she hadn't noticed, but even when I've pointed out particularly bad stains, she'll just huff and puff and put the item back in the wardrobe (then follows me sneaking it out again and putting it in the washing basket). She'll then usually put it in the washing-machine but then it's pot luck as to whether she actually washes it or just cuts out that process and just hangs it up to "air"!!

    Sorry I digress, I've just had a frustrating visit involving me sneaking downstairs in the middle of the night to do loads of washing while she's asleep!!.

    Anyway, check out Attendance Allowance we could have claimed it a long time before we actually did, because like you we assumed she wouldn't qualify.
  7. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Attendance Allowance

    Margaret, it certainly sounds as if your mum qualifies for the lower rate of attendance allowance.

    As others have said, describe the worst possible scenario. Also, when asked for the date the problems started, don't give today's date, give a date at least six months earlier. They make you wait for six months in case the problem should be temporary! (Don't we wish!).
  8. Adrian M

    Adrian M Registered User


    I have read your posting, and whilst I would not claim to have much experience - I am jsut trying to come to terms with moving my Mum to a care home (you can see my other posts Decisions and Truth Hurts for background if you like), but I do know a bit about EPAs and Banks....

    You should be able to register an unrestricted EPA with any bank. You will need to take your own identification with you when you go (a passport / driving licience / utility bill with address - you will need at least two types) unless you are already a customer yourself. Make sure they only copy your EPA - don't leave it with them - you cannot replace it!

    Once you have registered the EPA you should be able to do anything your mother can do. You can request duplicate statements (but you might have to pay for them) get your own cheque book etc. Some banks will let you use online banking (my mother's does) and most will allow you to use the phone.

    Don't forget your Mum might have other savings accounts etc that you don't know about - that is quite common.

    You can aslo use the EPA with utility companies. I registered mine with BT for my Mum's phone. It let me register online (as my Mum) and I could track her phone usage as BT run online call tracking - you can look at all the call details just 24 hours after call had been made. It let me see when Mum was calling her carers (we used a private care agency) more than usual or her elderly brother for help etc. I did tell Mum I was doing this for her. I know it might sound a bit 'big brother' but it did help keep track for warning signs.

    I know how tough this time will be for you - I went through this last summer - I can only say try and get as much help as possible. I was lucky the social services and specialist elderly mental heath team worked together and supported me in getting immediate help (intermediary care) for a couple of month while I made arrangements for a full care programme with a local agency.

    If your Mum is not in a financial position to pay for care social services have a duty to provide but it isn't always easy to get - as I say I was lucky in that respect.

    I wish you the best, but in my experience (limited) you need to protect your Mum first and plan for the long term.

    We never went through any long process for a diagnosis - two visits to a specialist elderly mental health consultant was all it took - no distressing scans / tests etc.

    I hope this may help.

    Adrian M
  9. MJK

    MJK Registered User

    Oct 22, 2004
    Ooops - sorry Jennifer, didn't notice your post! Didn't mean to repeat the info you'd given re Att. Allowance!
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire

    Thanks all, still not sure how to deal with these "threads", I wanted to reply to individual comments but not privately, but don't know how.

    Local council tell me no council tax rebate is likely unless she is on pension credit or Attendance Allowance. DSS or whatever the are now called tell me she is not entitled to Attendance Allowance as she is not incapable of washing, dressing etc.

    To the person who said it took two weeks to get a diagnosis, it is now 14 months since I first consulted a doctor by letter, never got a reply, and six months since the first visit to a doctor, since had five more visits and it is six weeks since she saw a psychiatrist. 4 weeks since she had a CT scan and still no diagnosis. Meanwhile I learn that she phoned her elderly friend seven times on Thursday to find out what time the old ladies club was and eventually didn't go. One of her friends rang to find out why, and mum didn't know she hadn't been. At 3.30 p.m. she told her friend she was getting ready for bed.

    The deterioration in the last month has been horrific. She has gone from being a slightly confused old lady going about her business, to a totally disorientated nuisance, to put it bluntly. It seems that she has gone from Stage 1 of dementia, to Stage 3 in the space of 4 weeks. It hasn't given me time to think about it, and I don't know what to do. I am in tears for the first time in 40 years. I don't know where to turn to next. Is she safe to be alone?


  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    While the first point is true, the second isn't necessarily. Until you fill out those forms no one can tell you one way or the other what the verdict will be.

    Is she safe to be alone? I'm afraid I can't answer that question for you. YOU probably won't be able to answer it until the answer is a definite "no" to be honest. Not remembering appointments is one thing; forgetting to turn the gas out is something else. It has for many of us come down to safety: if she lets random people in, wanders out inappropriately (or inappropriately dressed), leaves door unlocked or the gas turned on, in other words is a clear danger to herself the decision, if not easy, is easier. It's the in between stages that are tough.

  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Margaret,

    I do appreciate your concern for your mother and can see how distressed you are about her deterioration.

    What I would try to do, is separate the serious from the cosmetic.

    Her choice of clothes may cause you embarrassment, I can remember my mother dressing most inappropriately, and I cringed at her loss of dignity, but she didn`t come to any harm from this, and neither will your mother.
    But when it comes to applying for Attendance Allowance, does she need physical help with dressing, ie. can she put her clothes on by herslf and fasten them, or does she just wear unattractive clothes.

    Her confusion is worrying, but does any of it put her at risk. This is what you need to consider. Does she wander and get lost? Does she go out at night? Does she leave her doors unlocked, does she lose her keys?

    What type of heating does she have? Does she cook with gas or electricity?
    Is she able to control her heating and cooking facilities.

    And your final question,` is she safe to leave alone,` is the crux of the matter.

    Take care.
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Margaret, I'm not surprised you're upset. I think the diagnosis is the first thing you have to chase up, as without this it is difficult to access any other services.

    I would suggest you write to the psychiatrist's and explain how your mum has deteriorated, and ask for an urgent review. If nothing happens, I would write and ask about the complaints procedure. (Escalate is apparently the buzz-word!)

    Regarding AA, I suggest you get a new form and take it to your local branch of Princess Royal Trust for Carers. They know just how to angle the replies, and I honestly believe DSS take more notice if the form has been filled in by them. (Shouldn't happen, but I'm sure it does). Don't forget the six month wait.

    As for replying to posts individually, I wouldn't worry about that. No-one expects an individual reply. If a particular post or point strikes you, then by all means mention it, but apart from that, all we want is that you let us know how you're getting on. You're doing fine.

    If you mean you don't know how to do quotes, Bruce has an excellent tutorial here.You can also find lots of other tips.

    All the best,
  14. Clive

    Clive Registered User

    Nov 7, 2004
    #34 Clive, Jun 17, 2007
    Last edited: Jun 17, 2007
    Hi Margaret

    My mum was just like yours. It took ages to get the NHS and SS started.

    Your mum should get Attendance Allowance. Ring the Benefit Line on 0800 88 22 00 and ask for another application form. Payments are backdated to the day you apply for the form. I agree with Skye. Get it filled in by someone who knows the words to use. The District Nurse filled in mum's and put that she would go for her Pension on her own through a wood so she was not safe on her own. If you do not get it first time apply again. When mum got put on the higher rate it was back dated to the date of the form which was almost a year due to delays.

    Like many people we had to pay for a private company to come in to look after mum three times a day. I was able to specify the times they would come by email (varying it week to week to fit in with my availability to do the caring) however I had to set the full weeks schedule 10 days before the Sunday of the week in question. (Easier said than done). I also found that if I asked for some “Respite Care” please, which was basically when a Carer just occupied mum whilst I was supposed to have some free time, I was offered a few hours a week without charge. This might have just been the company I used, but cost control is important, so it is worth asking.

    Mum would not go to the Day Centre and so I asked the local Alzheimer’s Society for help. They put me in touch with a Pensioners' Cub who sent a volunteer helper to picked mum up once a week and they included her in their meetings. (A volunteer staid at mum’s side all the time.) Their mission statement said they included any race, disability etc and I think mum was their one with Alzheimer’s.
    The Pensioners' club also sent a volunteer once every two weeks to have tea with mum, which was also cost free. And they ran trips once a month which were no more expensive than employing a carer. (I stress the cost because when this is all over you will find your mum's health problem has cost you a lot more than you expect... and it helps if you start with that knowledge).

    Keep asking the questions, the answers will slowly come to you.

    Wishing you all the best with your mum


    PS. I also found a "Key safe" screwed to the outside wall with a spare key inside was useful. Any one who could not get mum to answer the door could then ring me for the combination to open the key safe and get in. (Had to take the safety chain off the doors. but mum would never remember to use it when people called, putting the chain on only at night.)
  15. Gill W

    Gill W Registered User

    Jan 31, 2007
    Co. Durham
    Hi Margaret,

    Just an update to my previous post, and also to add some input to others' posts.

    The alarm system on the door has proved useless, to be honest. It's been in for a few weeks now, and last night Gran went on the wander in her slippers for a jaunt to the seafront! She was picked up by the police at 11.25p.m and my mum was called out to settle her back at home again. My mum takes medication which makes her drowsy and so do I so she had to phone my sister to drive her the 25 miles, because we've told her off for driving under the influence of meds before now. The alarm system was set so that if the door was opened after 4.30pm and not opened again within two minutes, an alarm would sound back at the emergency care place and someone would be sent out looking for her. BUT!! You guessed it, it didn't happen. So we have two assumptions to make from that. Either she left the house before the alarm was set, and was wandering for hours before she was found, OR she left after the alarm was set and it failed to alert anyone. We've had an engineer out today to check for faults, the result is still awaited. The social worker who deals with Gran is off sick, so we may hear from her tomorrow, who knows?

    Attendance Allowance. Gran was allocated that as soon as she was diagnosed with Alzheimers. She was still capable of dressing herself, she still is, although she now dresses rather strangely of course. She wears old jumpers and tat that she's found in the wardrobe after x number of years and ignores all the decent stuff cos it "doesn't belong to her". Someone from social services was actually useful in that they filled out the forms for the AA, and others too, to make sure she was in receipt of all the benefits she was entitled to. Don't let anyone tell you that Mum isn't entitled to it, just fill the forms in and let the official decision makers make the decision.

    I can't remember who asked if Mum and I had had Carer's Assessment, but the answer is no. Social Services have been shown that Mum is in receipt of DLA and they can quite clearly see that I can't even stand up straight to walk properly, but they've not even suggested an assessment. I have told Mum that she should ask for one, even for herself, since she does more of the caring than me (I have two children at school) but to no avail. I think she's lost faith in them to be honest. We've had to fight so hard for so little it's become a chore to her so she doesn't bother.

    We started with Carers on a morning, then progressed to an afternoon when the meals where being left on the step, so that someone could ensure she'd had her meal. We've also had the key safe that someone mentioned installed, and we had to argue to get the guy who delivers the meals to use the damned thing. He wanted no part in using the safe to make sure Gran's meal went inside, but that was put right after a rather curt phone call from myself. The lunchtime carer was added after that, more as a check that she was in the house and to make sure she ate her lunch as leaving it til 4pm was proving ineffective.

    Gran has now become doubly incontinent, bless her soul, and it's getting harder by the week. Sometimes she can appear quite lucid, most of the time she talks absolute nonsense. She no longer truly recognises us as her family, she was most taken aback when she was told that mum was her daughter the other day. The expression on her face was priceless. Such a shame. She also now wears sufficient make up to give Coco the clown a run for his money, and she always took such pride in herself. She's still trying to do it of course, but her perception of sufficient and way over the top is gone.

    Her appointment with her consultant was cancelled the other day, hopefully it won't be long before its rearranged. We now have another wandering session to add to her collection, and we'll have to pray things start to move. She's 25 miles away from us, and Mum was totally and utterly worn out doing the 50 mile round trip every day when she was first diagnosed. We would like her near to us, but SS seem to be resisting all the way along the line.

    Just my perception on things, don't know if it helps at all.

  16. Lila13

    Lila13 Registered User

    Feb 24, 2006
    #36 Lila13, Jun 19, 2007
    Last edited: Jun 19, 2007
    It is horrifying that social services are being so unsupportive given your gran's, mother's and your situation.

    (Hope someone in here with more experience can tell you how to get more help from them.)
  17. Margarita

    Margarita Registered User

    Feb 17, 2006
    #37 Margarita, Jun 19, 2007
    Last edited: Jun 19, 2007
    Now that is true about Council tax .

    But not about Attendance Allowance

    When my mother got AA she would still wash herself & was not diagnosed with AZ .

    When you phone AA tell them that your mother has dementia and would like them to send you application forum .

    you don't tell them
    In the form tell them
    It you feel your mother needs that , then tell them why explain in the forum why you think she needs support .

    what support do you think she needs now , and what is coursing her from not doing it herself , not the dementia , but the symptom of the dementia . what symptom is she having , that is stopping her from living an independent life .

    I can't remember what they ask in the forum take it down to your local CAB they explain to to you better & can even fill it up for you
  18. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    TP? What is TP?


  19. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Where you are! TP = Talking Point :D

  20. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Thanks to all

    As said, I am a bit daft, I don't know how to reply to these "threads", so I assume this is going to you all.

    Thursday morning, Mum was found at 1.45 a.m waiting at the bus stop at the end of her road. Some kind person called the police. The police went to look and found no-one, so she must have gone home again. Thank God, or whoever. But at that stage the police had no idea who this old lady was. Except that she went back home and phoned 3 friends at 2 and 3 a.m. Two of them were very cross and rang me at 2 and 3 a.m. as well. One was exceptionally angry and said "You are her daughter, it is your responsibility, if you don't do something about it I am calling the police". Oh heck. So I rang the police and said if anyone reports my mother for making nuisance calls, please inform me and not her. Wherupon the officer I spoke to said "She wouldn't happen to be the old lady that was reported to be at the end of Laneside Road at 1.45 a.m. would she? And I said most definitely.

    Anyway, the police moved it on, and by 12.45 mum was on her way to a secure unit at a relatively local hospital (I was told she might end up miles away), and seems happy there. She is there for assessment only, she thinks she has been there for three days (only one), and that she is going home tomorrow. They reckon at least a fortnight for an assessment. But unless Aricept or similar changes her behaviour, she cannot return home and to the wandering at night. We went to cancel her papers, and the papershop told us she had been hammering on their door at 2 a.m. and the postman had seen her out at 5 a.m.

    Surely no care package can cover this.

    I think she is searching for companionship. She is desperately lonely on her own, the Old ladies club is a point of contact for her, and she is trying to get there at any time of day. I think she would be far happier in a home, where she has social contacts. She has few friends of long standing, so making new friends wouldn't upset her. Her few longstanding friends would visit her if I took them.

    I really can't see how she can return home now.

    Can anyone advise



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