1. Autumnal

    Autumnal Registered User

    Jan 9, 2016
    14
    Hi, this is my first post. I think mum may have Alzheimer's. I began to worry about her two years ago when she forgot things like where her handbag/keys where etc. I spoke to her GP but tests came back at that time which said she was fine. I knew she wasn't and decided that if she genuinely had dementia or Alzheimer's that things would get worse and sadly they have. What started with keys and handbags being lost, progressed to mum repeating everything in conversation multiple times, asking the same questions over and over again, not remembering birthdays, forgetting to put on makeup etc. But more worrying, recently she has forgotten where she lives and is convinced she is visiting the house she has lived in for the past 10 years and keeps asking when she has to leave. Over Christmas things got much worse and she began packing up her house, saying on a daily basis that she just wanted to go home. I took her to the GP after a difficult period of her refusing to admit there was anything wrong and fearing she was losing her independence. She failed most of the cognitive tests and blood tests have come back clear so her confused state of mind isn't down to an infection. We are waiting on a CT scan. I known in my heart of hearts that this is serious, and I am already exhausted constantly trying to reassure her that she doesn't have to leave her home. I just feel so afraid and confused as I have no experience of this and I don't have a clue what to do or how to seek help. I am assuming the first stage is diagnosis, but then what? I know about things like POA but have no idea how to broach this. I don't know how to help mum whilst holding down a full time job. Can anyone relate to this, and if so, what have you learned?
     
  2. Suzanna1969

    Suzanna1969 Registered User

    Mar 28, 2015
    346
    Essex
    Bless you, you are where I was a couple of years ago. It's terrifying isn't it?

    If you have siblings then you need to get them to help from the off, don't let them think you'll do it all.

    Information is power. I didn't discover TP until a few months ago which was a shame, I could have benefited from the advice here from the off, that's for sure!

    I got AgeUK to help with the LPA forms, Attendance Allowance Application forms etc. They were brilliant, a mine of info! Do get in touch with them asap.

    Mum still lives at home with Dad and, although he has Vascular Parkinsonism, he watches out for her and she gets things for him so it works. They wouldn't benefit from carers at the moment so I can't advise, other members are very knowledgeable though. If your Mum lives alone it will set your mind at rest while you're at work to know she has carers popping in.

    The best advice I can give you is DON'T PANIC! I never would have believed I could cope with what I have a couple of years ago, it's amazing what you can deal with. Once the initial shock has worn off you will be AWESOME. Just make sure you look after yourself too though.
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I agree with Susannah completely
    Get the first things in place by contacting the people who will help with the forms
    You can put Power of Attorney in place very simply online at a fraction of the cost of a solicitor and get it registered - both Health/welfare and financial. Age UK are brilliant with forms
    TP is amazing and you will get support every step of the way
    And new motto 'one day at a time'

    Welcome xx
     
  4. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    My mum has had dementia diagnosis for 6.5 years . I remember awful feeling when I first noticed her decline.
    It took me awhile to find things out such as respite care , reduction in council tax because mum has dementia and another deduction as i care for her.
    My local carers centre helped and also alzheimers groups for singing, discussions and support.
    Good luck xxx
     
  5. lin1

    lin1 Registered User

    Jan 14, 2010
    9,322
    Female
    East Kent
    Hello Autumnal.
    Welcome to TP. I am sorry to hear about your Mum, but am very glad you have found us as their is a wealth of knowledge on here, you will also get lots of cyber support.
    It sounds as though your Mum was able to put on a very good show for the GP the first time you took mum.

    It is is very hard at first because to be frank, you dont know where to turn to for help, that is definitely something we can help with , so do ask questions here.

    I understand you need some advice right now but have no wish to overwhelm you.
    Their is a thread in here about communicating with the memory impaired which may give you some tips, I must say it is not easy to do especially when you've been asked the same question umpteen times in less than fifteen minutes, sadly nor does it always work

    http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired.

    Personally I found Age uk formally age concern very helpful, you should find them in the phone book

    I am not sure if the Alzheimer's Sociiety helps before getting a diagnosis but their is no harm in phoning the helpline, they can also put you I touch with your local branch
    0300 222 1122

    Also Age uk and your local branch of the Alzheimer's society knows what's available in your area, will help with forms do a benifits check and run various things like cafes which are much more than cafes, some run day centres.

    Adult social services is another port of call.

    I think I have given you enough for now, as I said earlier I have no wish to overwhelm you.
     
  6. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Hi there. I'll reiterate what the others have said; Talking Point is very helpful (though can feel a bit distressing if you read something about someone facing even worse problems) - but it's worth it - very good for advice and emotional support.

    I faced a similar problem but though Mum passed tests, I wrote to Doctor and outlined the 'other' things that she did which clearly indicated a problem so she was diagnosed with cognitive impairment quite early. She started Aricept and they really helped her so she had a couple of years still able to drive and with little extra support. Gradually she has deteriorated and her needs have grown but after 8 years she still lives alone with care and manages remarkably well.

    My list of important things for someone approaching my situation initially would be:
    1) Recognise there's a problem and as gently as possible find a comfortable way to help Mum accept there is a wee problem too (Mum still thinks, but accepts, that she has a slight memory loss, and happily takes pills and tells people this)
    2) Get a diagnosis as sometimes medication helps and a diagnosis gets you financial benefits - Attendance Allowance, Carers Allowance and Council Tax rebate are the main ones, and other disability benefits (maybe a Blue Badge, maybe a RADAR toilet key etc)
    3) Get a/both Powers of Attorney sorted so a trustworthy person can sort out any financial matters (and maybe care matters though my view is that you can't force a person to agree care issues so discussion is still needed with this one)
    4) Start a bit of care asap (Mum had a cleaner which built up to her 3 visits a day care presently)
    5) Start thinking worst case scenario so if things go pear shaped you have some idea what to do next (ie sudden serious illness - which care home are you looking at?)
    6) Get Mum feeling comfortable with you rooting around in her belongings (I do a lot of 'cleaning' and 'washing' - which means I can find documents, go through clothing, locate things when she puts them in odd places)
    7) Start feeling comfortable with lying - when a person has early dementia they will expect to drive their car, go on holiday alone etc - if this is no longer possible have a perfectly rational (to them) reason why they can't do this (oh, the car's in the garage for a day or two) and not the real reason (you can't manage to drive now).

    Those are my first thoughts.
     
  7. Autumnal

    Autumnal Registered User

    Jan 9, 2016
    14
    Thank you

    Thanks so much to everyone who has replied. I feel much better today, and am more of the mindset... right lets get on with whatever needs to be done. It's also lovely to know that other people understand how this feels. I have discovered an Alzheimer's information day near me next Saturday and am going to register for that and I will contact Age UK tomorrow too. I am also going to have the difficult conversation about POA this week with mum and we will see where we go from there. I love the 'one day at a a time' mantra, especially as mum is seemingly ok one day and really not the next. What a roller coaster this is! Thanks again everyone x






     
  8. theunknown

    theunknown Registered User

    Apr 17, 2015
    325
    I feel for you. The problem with Power of Attorney is that it may be easy to set up, but it's only legal if the individual involved is either able to read the document for themselves, or is able to understand what is being read out to them. In my mum's situation this couldn't happen. She'd refused the idea of PoA because she thought she didn't need it (even 'though looking over diaries, notebooks, etc, show she was worried about what was happening to her). This meant going through the Court of Protection, and getting deputyship for me to sort out finances. It cost us thousands of pounds to start off with, until I was able to access one of my mum's bank accounts.

    My husband and I keep saying that we must make wills, and alongside that set up a future power of attorney. Needless to say, we haven't got around to it, but it is so important; particularly alongside the governmental separation of health and social care. Mental health is almost treated as something we're responsible for; so the state shouldn't be expected to provide financial help. Do these people know nothing, or not care? The physical aspect affects the mental aspect, and vice versa.
     

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