1. rosemouse

    rosemouse Registered User

    Oct 12, 2015
    6
    Hello,

    I don't live at home but my mum has just been diagnosed with Alzheimer's at 65 years old. She is independent and previously very successful and high powered in her job, retired at 60. Not long afterwards I started to notice that her scope of things she talked about began to narrow, her confidence dipped, she began relying more on my dad to make decisions (she would normally make them in the family), conversations with her started to become very one-way: she would talk at you (usually about the same things) and it was as if she wasn't listening - or hearing - the answers you'd give.

    I suspect the symptoms started a couple of years ago, but only this summer we sought a diagnosis and booked her an appointment. She did not react well to this. Although diagnosed, and now on drugs for it as of last week, she will not talk about it (to me) or acknowledge it openly. She does not admit there's anything wrong. Doesn't understand why my dad is sometimes frustrated and tells me he is "always having a go" at her. Whenever I go home to visit I feel like I am between the two of them, mediating, trying to support my dad - who is very patient but is adjusting to the diagnosis and what it means, and how to handle it, and sometimes gets frustrated - and being supportive to my mum, who obviously can't, at this stage, understand why he's frustrated.

    She is at a very early stage, still so loving, talks a lot about the past, travels, sees friends, maintains a fairly normal life, and recently got OK'd to drive again which we're so pleased about. But I don't live at home and although I visit every couple of weeks, but call every week, I find it difficult because she is almost in denial, and often feel angry about this stupid disease and anxious about leaving them to handle it. I don't think it's sunk in yet that this isn't my mother being annoying (which we thought it was for a long time) but because it's out of her control. It's all so new to us. And so difficult to stop your brain leaping into the future. I am not sure what is my mother's personality and what is the alzheimer's taking hold.

    Sorry, long first message. Hoping to hear some words of wisdom or just "been there", if you have, or remember being at this stage of things!
     
  2. Patricia Alice

    Patricia Alice Registered User

    Mar 2, 2015
    179
    Hi Rose,

    Welcome to TP.

    As you say it's a terrible disease but as your mum is in early stages they can probably hold it back with medication.

    My mum is 91 and has mixed dementia, but I remember about 7 years ago she kept buying loaves of bread and cauliflowers every day. We put it down to old age at first, but when the constant repeating started and becoming frightened and agitated we knew it was more.

    Just sending you a cyber hug.
     
  3. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    189
    North Hampshire
    Hello Rosemouse,
    welcome to TP...

    Definitely "been there" :-( as will almost everyone else on this site...

    Lots of great information and help available here...

    I don't want to overload you, so I'll just mention a couple of things.

    There's a great note called "compassionate communication" that I think you and your Dad would really benefit from reading. I re read it regularly...

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

    It may also be worth your parents thinking about getting a Lasting Power of Attorney set up for your Mum.

    https://www.gov.uk/power-of-attorney/overview

    There are other things to think about too... but I'd take it slowly or you just end up feeling completely swamped.

    My Mum is a few year down the line, and still in complete denial, although we never remind her about it.

    Aim for keeping your Mum calm, happy, useful and feeling safe.

    Keep posting - you are definitely not alone.

    ElizabethAnn
     
  4. Tin

    Tin Registered User

    May 18, 2014
    4,826
    UK
    It's a hard one, not knowing and wondering what the future may hold. Sad thing is that because usually the memory or lack of it is the first indication, you then get into this terrible scenario of repetition and of course the sufferer is in denial and why not, can't remember what has been said or done.

    Caring for a person with Dementia is not easy, it can be so demanding and oh so tiring sometimes. My mum has lived with me for almost two years and bad or good, I have got used to the changes in her, you will find that you will adjust your thinking and caring as time passes and always remember talking point, you can ask anything on here, believe me, the stuff I have discussed I would not dream of talking about with members of my own family because I want answers or just empathy from someone who has/is in same situation.

    Take care.
     
  5. rosemouse

    rosemouse Registered User

    Oct 12, 2015
    6
    #5 rosemouse, Oct 12, 2015
    Last edited: Oct 12, 2015
    Patricia: Thank you so much for your reply. I'm hoping the medication will help. It's almost a relief that she's on it now, as it helps it seem more real.

    ElizabethAnn: That's brilliant information - thank you. The compassionate communication thread is so useful, and is definitely something I'll share with the family (and train myself on as well). You're right about being careful not to swamp ourselves, I have left it a couple of months to even start asking for more "personal" help like this because I didn't want to overload myself - the websites are good but reading and talking with other people who have been in the same spot is immediately better. My first instinct was to research everything but I know that's not the way. I'm so sorry about your mum. Do you think if they don't accept the diagnosis to begin with, they never will? Hard to say, I expect.

    Tin I find it even reassuring to hear that you've got used to the changes. Non of my friends have gone through it and sometimes I know they don't know what to say, although they are very supportive of my changing moods at the moment... thank you for the support. I hope today's a good day for you.
     
  6. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,278
    Female
    near Folkestone
    Hello rose mouse my husband got diagnosed at 60 and is holding up well ( he will be 66 on Thursday) My advice would be to sort out any leagal and financial matters and then enjoy and make the best out of every day :) diagnosis is good so medication can be given to slow the disease down . I concentrate on all the things my husband can still do rather then what he can't . Nearly 6 years down the line, he is still converse albeit slower and even though he is aware of his illness, he has such a positive out look on things. Keep posting and you will get a lot of support and advise :) xx


    Sent from my iPhone using Talking Point
     
  7. ElizabethAnn

    ElizabethAnn Registered User

    Jan 4, 2014
    189
    North Hampshire
    I really don't know if Mum (or anyone else who is in denial) will ever accept the diagnosis :confused:

    Mum & Dad get one of the tabloid newspapers with the scaremongering headlines and whenever there is anything printed about "Dementia" - she always makes some comment like "At least I don't have that" :confused:

    If something happens and she realises that she's confused, I say something like "Don't worry Mum, it's just your short term memory playing up today - it really doesn't matter" and she seems to be happy with that - I usually do it holding her hand or giving her a cuddle and smiling... all of which seem to calm her down again... I then say the immortal words "Now, lets have a nice cup of tea" :)

    It's taken a while to get to this, we just had to keep trying different things until we found something that works and then not be afraid to keep repeating it.

    The main thing we've found is not to keep correcting her and to make sure that we keep her calm and happy, and feeling useful, safe and loved - a bit like we would all like to feel in an ideal world :)
     
  8. chris53

    chris53 Registered User

    Nov 9, 2009
    2,929
    London
    Hello rosemouse:)sending you a warm welcome to Talking Point, glad, but sad you have joined us, much understanding and support here in a safe place, so sorry your mum and family are now on this unpredicatable journey into the world of dementia, which sometimes we as carers and people that care can understand, sometimes alas it's a total minefield,it's always a shock knowing that your loved one is going to change,sometimes from day to day or minute by minute and trying to get practical help can take up so much time, so herewith a link, I was given, which may be of help to you, above all,please don't feel alone,someone is usually around here day or night who will be able to share any new experiences you are dealing with,or just a cyber hug if needed;)
    Take care
    Chris
    http://www.alzheimers.org.uk/local-information/dementia-connect/#!/search
     
  9. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,423
    Male
    Cornwall
    Not sure I can give you any words of wisdom on dementia because we are all cope with our diagnoses differently , but there are a few Talking point members like myself who were diagnosed in their fifties and have gone on a lived full active lives probably on medications obviously the longer with live well with our dementia and getting older old age bring for some of us other medical problems I myself having dementia for 16 years personally feel dementia wise as active now as I did in 1999 only a very slight decline but that maybe old age also
     
  10. River15

    River15 Registered User

    May 28, 2015
    9
    Hi there

    Just read your post. My mum has also been diagnosed with early onset. Although we started to notice things back in 2011 it took 3 years to be diagnosed. Things have progressed and she can't drive or do much independently. She is often muddled about time and places and I am always thinking of her. She was in denial for many years but now can tell people she has Alzheimer's.
    Although this is a living nightmare where I constantly feel this out of control panic / sadness / realisation, it has actually brought my family together and we now live more for the moment and enjoy the little things in life.
    I hope you are coping well and it would be good to hear from you

    :)
     
  11. rosemouse

    rosemouse Registered User

    Oct 12, 2015
    6
    Hi River, thanks for your message. (and also to Chris and Tony, above you, who I didn't get a chance to reply to)

    So sorry to hear that you're in the same situation, and how horrid to have to wait 3 years to get a solid diagnosis. It didn't even occur to me that it was Alzheimers for ages, it just seemed like really frustrating behaviour, but if we'd clocked a few years ago that this was what it was then maybe we'd have been in the same situation as you.

    I've also found that despite, as you say, it being a frankly terrifying disease, it's brought the family together. My sister makes more of an effort to be in touch and around when she can. Also, so far, their friends have been nothing short of understanding and helpful towards my mum and dad.

    It was her birthday recently and I found it really quite upsetting on the day, I made her a photobook and I had to stop myself from crying as she leafed through the pages naming people (and only getting one person wrong). She's just had her medication dose upped, and the doctor is concerned that she's not facing up to the reality of having the disease.

    I'm glad that your mum can tell people she's got it, I hope one day my mum will be able to acknowledge it. She's just such a proud woman I don't know how much of it is her not wanting to be seen as "demented" as she puts it.

    I've been using the suggestions for compassionate communication that someone posted in this thread and have found it very helpful for keeping my sanity - but it's so hard.

    How are you coping day to day? Will you be with your mum for Christmas?
     

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