Hi, am I in the right place?

Discussion in 'I care for a person with dementia' started by TimT, May 11, 2015.

  1. TimT

    TimT Registered User

    May 11, 2015
    10
    #1 TimT, May 11, 2015
    Last edited by a moderator: May 11, 2015
    I don't even know if I'm in the right place. My name is Tim. My mother is 80 and she was diagnosed with dementia/Alzheimer's maybe 5 years ago . (I was told dementia is a form of Alzheimer's, and that Alzheimer's is a form of dementia, and I am still none the bloody wiser!). After that she was placed under the care of the local Memory Clinic where she was prescribed donazepil. She was there for two years before they decided that because she was showing no signs of deterioration she could be discharged. Which to my mind calls into question her entire diagnosis in the first place; just how bad do you have to get? I feel like we were abandoned just because she didn't meet a minimum level of criteria for help.

    However, even now she still recognises me and her sister; she can still communicate and hold conversation, though her comprehension and retention of information is bad. She isn't incontinent, she knows how to use a knife and fork, etc. She even does the washing up! But then I suppose this horrible disease affects us all differently; I know a neighbour who has the same condition and is in a far worst state. But sometimes I wonder if this is just ageing, or whether she does actually have this disease. Isn't she a bit old to be be diagnosed with this? I always hear of early-onset dementia, but rarely dementia diagnosed this late in life. Recently however me and her sister have noticed she is talking to herself more; it's not abusive or gibberish, she's having what seems like full conversations with people from her past, recounting memories. She does it in the loo, in bed, even while watching TV. I asked her what she was doing, and she just said, matter of factly, "oh don't mind me I'm just talking to myself".

    Is this normal? What the heck does normal mean, anyway, in a illness like this? Just how am I suppose to react? What am I suppose to do? Should I just let her live in her own little world, or snap her out of it? We're from completely different generations and it's hard to find common ground for things to talk about; and if we do find something to talk about she doesn't comprehend all that well, and quickly loses interest. I am neither a psychiatrist or a counsellor; I feel like I'm not equipped to handle this. Each day I feel less and less like a son and more like a glorified baby-sitter. I think I'm coping, but I'm not; the only respite I get is she goes to a day centre twice a week. But I'm starting to wonder if an extra day might help.

    Tonight I snapped at her, and I broke down in tears, which is unusual for me as I tend to keep everything bottled up. Physically she can walk and is fairly mobile; it's her memory that is the main issue. One minute she praises me for all I do for her, the next she's muttering under her breath that I'm an "idle ******" who does nothing. Believe me, I do pretty much everything that needs doing, including her dinner as well as my own! Her mood swings are really hard to take sometimes. She won't even admit most of the time that she even has a memory problem, and that drives me nuts. I can see it every damn day; I have to watch her, I have to make sure she takes her tablets; I'm the one who makes and keeps doctor/hospital appointments for her. I am essentially now the man of the house; I have to do everything for her. I have applied twice for Carers Allowance/Attendance Allowance and on both times I was turned down! That's what you get for being honest!

    I'm an only child, with few friends or family, so it's left up to me and her 82 yr old sister (who doesn't have any dementia and is surprisingly fit and healthy for her age!) to deal with her the best we can. My dad died two years ago (Mum's husband) after a long illness and even before then I was more or less looking after them both. After he died (I had to arrange the funeral, one of the hardest things I've ever had to do in my life) I organised a widows pension for her, just to help her out financially. And if we need a plumber, I get a plumber; if we need an electrician, I get an electrician; if the heating breaks down in the winter which it did during a cold snap, I get an engineer. There is no way in hell she would be able to do any of these things by herself. I also had to take control of her pension, and bank accounts, because she would have struggled otherwise; she barely knows how much she has in her accounts, let alone how to deal with direct debits, standing orders, etc. If I weren't here for her, I know she would struggle really badly. But at the same time I feel trapped, and utterly bereft.

    I'm sorry I'm rambling. My only comfort in those dark and lonely hours is knowing I am not alone in this.

    Thankyou,
    Tim
     
  2. Cinder

    Cinder Registered User

    Dec 14, 2014
    66
    Hi Tim-
    So sorry you are going through this.
    You are not alone.
    My MIL is 79 and has many similar symptoms. She lives with us now and I so sympathise with the workload. You end up doing everything. Literally, everything. Even when they swear blind how they are fine, you know how much you are doing so they can maintain their dignity.
    It is so hard. And so lonely,
    The disease can move very slowly and it can appear that people are stable for several years. My MIL is convinced she's fine and presents vey well. But her short term memory is blown to bits and she can't even brew a cuppa anymore.
    I wish I had more to offer than words.
    But I'm afraid a virtual hug will have to do.
    If it helps at all, you are a .



    Sent from my iPhone using Talking Point
     
  3. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    Hello Tim

    Yes you are in the right place and I`m pleased you found Talking Point.

    Alzheimer`s Disease is one form of Dementia. There are lots of others and they all come under the umbrella term of dementia. I hope this clears up the puzzle for you.

    This factsheet might make it clearer.

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=106

    I do not understand why you were turned down for Attendance Allowance. I would apply again and if necessary consult with someone from AgeUK just to check you have filled in every detail of your mother`s difficulties.

    Have you had a carers assessment from Social Services?

    http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=131

    It sounds as if you are doing far too much and really need more help. Please do not hold back but tell Social Services just how difficult you are finding caring for your mother.
     
  4. Girlonthehill

    Girlonthehill Registered User

    Jan 1, 2015
    32
    Dorset
    Tim I hope getting all that out made you feel a bit better. You are in the right place and most, if not all, of us have felt the same. The roles are reversed, we are the parents when all we want is our mum or dad to be just that , mum or dad.
    This is a truly vile disease. I wonder why you don't get attendance allowance? You need to put on the application form every single thing you do, even if you feel it is irrelevant. I am an only child as well and I understandvthe strain of having no one to talk things through with. But, I do know that even in big families often it is just one person left with the burden of care.
    You will find endless useful information in these pages, rant whenever you like. This is a safe haven. Take care of you in all this as well.
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,499
    Female
    London
    Hi and welcome to TP.

    I feel you might benefit from reading this article about compassionate communication: http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

    You could also try to involve social services more and get in touch with Age UK and the Carers Centre. They can assist you in filling in forms which can be an art form - you need to fill in the AA form with the worst day in mind, not the best.
     
  6. TimT

    TimT Registered User

    May 11, 2015
    10
    Thanks for all your kind words and support, I am in tears. I am terrible at asking for help and will always try to just grin and bear it alone. I did have someone from Social Services come to make an assessment, she filled in the Attendance Allowance forms herself. The last time I applied, they even phoned to ask why I had applied, they couldn't see what was wrong. I think the problem is that Mum's condition is not physical; it's mental and psychological. I will try to reapply for Attendance Allowance again. I just hate form-filling; it's so impersonal.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,731
    Kent
    When you fill in the form for Attendance Allowance Tim, bear in mind two very important points.

    Would your mother be considered a Vulnerable Adult?

    Would your mother be safe if left alone in the house or is she at risk?
     
  8. Cath59

    Cath59 Registered User

    Jan 23, 2015
    46
    Our local Alzheimer's Society support worker offered to help with the Attendance Allowance forms. I haven't taken her up on it yet - you have to have needed support for six months and although my mum's quite bad the deterioration has been fast so we're not quite there yet. It might be worth seeing if there's anything like that where you are. It helps to have someone to fight your corner. Failing that I understand Age Concern can be very helpful.
     
  9. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    When I applied for mum's AA to be increased from lower to higher rate, it was less than six months since her night-time needs had increased. The application was approved, but the start date of the payment was delayed until the six month point was reached. So it might be possible for you to apply 'in advance'. Maybe give them a call to check to avoid wasting time if this is not current policy.

    I did the forms myself but having read other posts since I would definitely say get someone from Age UK or AS to help you as they know exactly the right way to describe things.
     
  10. Beate

    Beate Registered User

    May 21, 2014
    11,499
    Female
    London
    I was just coming on to say the same thing!

    I did the form myself and was rejected first but I appealed, enclosing further evidential reports from the Memory Clinic which did the trick. I also heard from someone in the know that apparently "20 minutes" is a good answer on how long any task takes you - I have no idea whether this is true but as I said before, you have to describe the worst day when you need to give a lot of help, not the best day where she is almost fine.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    Hi Tim my mum is 90 now and was in her late 80s when she started with Alzheimers. It was a very steep learning curve - I recognise all the things that you have described. Mum does not realise that she has any problems and before she went into her care home thought she was still doing everything although in reality she was doing nothing.

    It sounds like the person who filled in the Attendance Allowance form did a rubbish job. Re-apply and perhaps get someone from AgeUK to help you - they are usually very good. As everyone has said - you need to say what its like on her worst day and remember to fill in the box at the bottom with examples, or they will disregard the tick-box.
     
  12. SugarRay

    SugarRay Registered User

    May 5, 2014
    48
    Sunny South East
    Hi Tim, reapply and complete the form yourself if possible. Don't use good days, always use the bad ones - I think we all like to wear rose tinted glasses when it comes to our loved ones - Tim if you can, take them off and write down exactly what you do - I think you'll be surprised and shocked. All the best. We are all in a similar boat here and try and help others if we can. SR
     
  13. TimT

    TimT Registered User

    May 11, 2015
    10
    I think she would be considered a vulnerable adult, and I have serious concerns about leaving her alone for too long. Recently a water pipe burst and it was dripping through the ceiling of a downstairs cupboard. I got a plumber and got it fixed. If she had been alone I seriously doubt she would have known what to do or who to contact. Similarly, during a cold snap the heating broke down for a day. Again, she wouldn't have known what to do in such a situation. One time she put something in the oven and, forgot about it. I also can't remember the last time she went shopping; if she goes anywhere it's with her sister, who does the shopping. Mum pays her for it. If she were left alone, I don't know how she'd cope.
     
  14. TimT

    TimT Registered User

    May 11, 2015
    10
    I understand why people are telling me to recall the worst day, not the best. I've been told that before, by Social Services themselves. My problem is I think her worst day - or my worst day - is still not bad enough to justify AA. Or maybe I'm just too damn honest.

    I always remember someone from the DWP coming to assess her. She kept emphasising that Mum wasn't very tidy and looked a bit dirty, which wasn't true. I - stupidly - got the wrong idea and got a bit defensive. Eventually the lady left, and it was only later on in hindsight did I realise what she was doing. She was trying to get me to say things in order to increase my chances of getting AA; she was trying to get me to exaggerate Mum's condition. This woman was from the DWP was actually trying to get me to defraud the DWP!

    I am so bloody confused.
     
  15. CynthsDaugh

    CynthsDaugh Registered User

    May 5, 2015
    140
    Salford, Lancashire
    Hi Tim, another one to say apply again. I was advised by the memory clinic to use the worst bad day as the basis of what help my Mum needed. And be honest with yourself about how much help your Mum needs - you say you have to make sure she takes her tablets - one example I would make sure you specifically mention! In the 'any other information bit' I highlighted things like Mum can't cook, clean the flat etc. and also similar thing with medication - nothing wrong with a bit of repetition from the main answers if necessary to make the point.
     
  16. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    hello Tim, and welcome to TP, you will find all the information you need here. And yes AA is daunting, re apply I did.
     
  17. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    :)
    She was probably trying to point out what makes your mother eligible for Attendance Allowance. I got Citizens Advice to help me fill in these forms, they were absolutely brilliant, they know all the buzz words and phrases to use. Left alone, I filled in the form in a defensive way for example, on behalf of my mum I put down that I helped her with daily bathing, what I should have said was: unable to use bath without assistance.

    Try again, swallow your pride.
     
  18. SugarRay

    SugarRay Registered User

    May 5, 2014
    48
    Sunny South East
    It's not fraud and you're not being horrible or disrespectful to Mum. It's being realistic. This disease is progressive, and you need all the help you can get. One benefit will have another knock on effect on another. There is a mountain of advice out there but only you know your Mum and your situation. I applied for and got AA for Mum, but then won our case for funding and I'm still waiting to pay it back - but that's a whole other story for another day!
    Also think about a Blue Badge as well, if relevant to your Mum's needs.
    And most importantly photo copy everything, make notes of who you speak to, and I always sent paperwork via the next day signed for post - things do and can get lost, but that's me and my experience!
    Have faith. SR.
     
  19. canary

    canary Registered User

    Feb 25, 2014
    9,397
    Female
    South coast
    You are not defrauding DWP by saying what it is like on her worse day - that is how you are supposed to do it. Think about what would happen if you wernt there on her worse day. Dont forget that even reminding someone to do something counts, so even if she is, for example, capable of actually washing without any assistance at all would she still do it if you wernt there to remind her? If she has been known to put things on the gas ring and then forget them, or turn on the gas but not light it, then she needs someone to watch over her to keep her safe all the time that she is awake.

    I know its not nice to admit what its like, but far from exaggerating what she is like I suspect that you are playing it down. Im sure she is eligible for Attendance Allowance.
     
  20. TDA

    TDA Registered User

    Mar 3, 2015
    25
    My mum has higher limit AA, my dad dealt with it before he died, but I think someone from/connected to the Council came out and filled the form in for her. (Kirklees, West Yorkshire)

    Try Admiral Nurses either.
     

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