Help! I'm new to all this.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amanda1954, Nov 5, 2006.

  1. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    My mum was diagnosed with Alzheimer's on Wednesday. I sort of thought it might be but didn't think further than that. Now I have to face it and I'm finding it hard. I'm 52 and she's a very young 80. I love her very much.

    Everyone on this board seems to know so much about it all. There are a lot of abbreviations I don't understand, and people talk about 'stages'. I know nothing of all this and feel totally at sea.

    This is a great website but there's so much and I don't know what to look at first.

    My mum is OK at the moment. Bad memory problems but she's still living at home on her own OK, still driving, looking after herself well, having a great social life - she's lucky she has some good close friends. It's the future that worries me, and also how to talk to her now.

    She was worried because the doctor spent some time with me after the consultation and she seems a bit suspicious of what we might have been talking about. I just don't know how to reassure her without telling her exactly what was said and upsetting her. The doctor told her what was wrong but I don't know if she remembers.

    Sorry to ramble on - I just wondered if anyone had any suggestions. I'm sure there are answers already on this board but I haven't time to trawl through thousands of posts.
     
  2. Áine

    Áine Registered User

    #2 Áine, Nov 5, 2006
    Last edited: Nov 5, 2006
    Hi Amanda ......... welcome to TP ........ sorry you need to find yourself here. Take it easy ........... you've had the diagnosis 4 days and already found this discussion forum, joined,posted, and started to realise some of the things you need to know ..... not bad going :cool:

    I think this is the link to the fact sheet on stages:

    http://www.alzheimers.org.uk/Facts_about_dementia/How_dementia_progresses/index.htm

    If you ask about specific abbreviations I'm sure people will be happy to translate.

    Just been thinking about your question about how to talk to mum now. Maybe you could talk to her like you did on tuesday before you got the diagnosis ....... she's still the same "young 80" mum that you love. I guess how much you say about dementia and how much you talk about your anxieties and hers about it, depends to a large extent on how much you've tended to talk about other anxieties and problems as you've gone along. It sounds like mum is still very able. Maybe it would be helpful for her (and you) to be able to talk about what might happen and try to plan and put things in place for when she isn't so able. IT would be good to get things like enduring power of attorney (EPA, or sometimes abbreviated at POA) sorted now ....... ready to come into effect when needed (hopefully not for a long time yet).

    Maybe no need to rush too much though ....... give yourselves time to let the diagnosis settle in and start to adjust to it. There's a lovely bunch of people around here ......... and between us we've been there, done it and bought the t-shirt on just about every dementia related issue ........ I'm sure they'll be of great help in the coming weeks and months.

    best wishes
    Áine
     
  3. angela.robinson

    angela.robinson Registered User

    Dec 27, 2004
    520
    Hi Amanda , Try Clicking The Search Button At The Top Of The Page , Type In Abbreviations , Or Any Word Your Interested In , It Will Bring Up All The Post Relating To The World ,angela.
     
  4. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    To even dream of telling my mother that Alzheimers (with LB) - Lewy Bodies ) has been confirmed would be the worst scenario...... to pretend that we can go back to 'pre-diagnosis' conversation is a dangerous game...... or proves I have as little respect for her as others now her dementia is confirmed.....

    Her GP, consultant, Outreach worker etc etc have agreed with me that to confirm her diagnosis would be to spiral her into depression ... not good news for anyone, especially her ... I'm afraid it's a sad fact of being faced with long-term caring that we have to protect and care for the sufferer, not just in terms of their physical needs, but in terms of their emotional welfare - and if that means 'pretending' for their benefit - they are still mentally capable, then it's all part of the scene...... at least the way I see it.

    For mum to become depressed by being faced with 'truths' would be a nightmare - that's my job to fight that particular monster and protect her from it as best I can - (and yes, furtive converstaions with doctors come into that play because at the end of the day it's about caring and protecting...... and managing her situation without her realising she is being 'managed')

    Amanda, one phrase jumped out at me in your post : 'I love her very much'

    You need say no more. That's what we all do, why we're all here - because we love and are to some degree or other heartbroken and lost - whether it be the jargon of this whole horrible new world or our individual circumstances.... we're all here to help..... and drives us to need help.....

    Much love, Karen, x
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Karen,
    Though I understand where you are coming from, and with my mum we only ever talked to her about ' a bit of a problem with your short term memory', we do have members of TP who suffer with one form of dementia or another and are fully aware of their condition. Amanda, you probably know your mum better than anyone - you know in your heart what she is capable of hearing and understanding - you call the shots - there is no right answer, no right thing to do.

    Don't worry about trawling through previous posts; the TP membership is constantly changing, so there will be others who want answers to the same questions as you. And if one of us remembers a good previous discussion we will put in a link to it for you.

    Sounds to me as though you are doing really well at present. Take one day at a time - make the most of it - for none of us know what tomorrow holds.
    Love Helen
     
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Agree with you Helen....

    Precisely why Áine should not be making a 'global' observation...
     
  7. Áine

    Áine Registered User

    I think you misread my post TF. You seem to have read it as my saying that everyone should talk to the person they're caring for about the diagnosis. What I'm actually saying is that Amanda (or anyone else in this situation) should base how much they talk about it on what they know of the person and how much they generally talk with them about anxieties. I'm not sure how treating someone as the loved parent they still are is disrespecting them :confused:
     
  8. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Hi Amanda welcome to TP

    I know how your feeling about first been told your mother has AZ about when you say
    Being suspicious we must remember is part of AZ

    If you can be open with your mother , just tell her kindly he told me what he told you about having AZ , if may not be that she does not remember she may be in shock and gone in to denial.

    Dose your mother know what AZ is? What is her psychological view of AZ you could ask yourself, so hopefully if you know this, your know how to approach your mother on this issue with out hurting her feeling.
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    That's not what I said either..... I know you're raw but I have to ask the question... did you go thru' telling your dad? Did you have to register an EPA? What family issues did you have to cope with - just which T-shirts have you got that you boast about which makes you think you know it all????

    It alll went so quickly for you - for which I am desperately saddened - and admire so much of what you did ..... but some of us have already been in for - and still face - a long haul..... and don't have your patronising self-worth to help them through.

    Goodnight, Vienna, as they say.
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I hope you all don’t mind me saying that I do not like that philosophy of taking one day at a time , I could never get my mind around that . if they are talking about my mother I would say yes take one day a time , because I do no what the future lay ahead for my mother, as I am not in denial about it.

    If they are referring to me, I could say no I am not taking one day at a time, as I like to forward plan
     
  11. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Amanda1954,

    Welcome to TP ("Talking Point") and, as you might have observed, we don't always agree on things. We can speak your mind, get things off our chest, ask questions - anything that might help us all get through and hopefully gain a greater understanding of dementia in all its 'types' and 'stages'. We might look like we know a lot but there's always more to learn - about each other too.

    You don't have to feel overwhelmed about reading through everything - you could just start reading new posts from now on ("Today's Posts" link) and you'll soon start to read things you will want to comment on or ask about.

    I'm around your age and my Dad was around your Mum's age when we found out he had Alzheimers. In our experience we felt there was never a chance to talk about it to Dad - he knew he had memory problems but we figured what good would it do to tell him he had something he probably would not have understood by then anyway? It very much depends on individual cases.

    I hope that you will get as much from TP as many of us have.

    Best wishes,

    Hazel.

    Karen (TF) - glad to see you're back, how's things with your Mum? You're sounding like you need a hug tonight? {{{hug}}}

    Margarita - My understanding about "taking one day at a time" is that sometimes a situation such as this becomes overwhelming (especially at diagnosis) and the best way to look at it is in small chunks. But usually I'm with you on the forward planning!
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Just to chip in here into a conversation that has developed rather bizarrely, and as far as I can see, for no apparent reason - other than the fact that at one time or another we have all been frazzled, while at other times we have been able to put the frazzled things into a more objective context. When the two meet, it can be unpredictable.

    When someone - anyone, moderator or not - gives their considered advice to a person who has posted on TP, it doesn't mean that they necessarily mean that advice to apply to any other person, and other members should not take the fact that advice that they know would not apply in their case, personally.

    I've read and re-read the thread, and can see nothing untoward about what Áine posted, in any reply. I'd have said the same.

    My advice is that in reply to something that we believe not to be always the case, we make the reply general, not personal. Suggest alternative situations and solutions. To do anything else helps no-one.
     
  13. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Hi Amanda
    Welcome to TP, as Áine said, your Mum is still the same person she was before you got the diagnosis, whether you discuss the AZ is down to how much you would have discussed with her before, you know best. We have never discussed diagnosis with my Mum as she would certainly have gone into depression(she has always had a tendency to depression), and the diagnosis was way down the line anyway, so we talked about her 'memory problems'. I would echo what Áine said about EPA though , if you can get this done sooner rather than later it's much easier, we were borderline and had to get her consultant to verify she could still understand what she was doing, and use a solicitor to ensure it was legally watertight. Needless to say my kids now have an EPA for me, just in case anything goes pear-shaped:eek: Better prepared than not is my motto!;) Our paths are all different, but in many ways so much the same, I'm sure you will find great support here, it's one heck of a learning curve but TP helps enormously.Take care and come back and post
     
  14. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Hi Amanda!
    As we say here in Australia (and probably elsewhere!) - it is a ****** this disease, isn't it? Those of us with parents with AD (Alzheimers Disease) are probably affected differently from those with partners or spouses with the disease.

    My Mum is now 84 and has been in a secure Hostel (for patients with dementia) for about 15 months. She chose to go there because she was the primary carer for my disabled Dad (who has since died) and she couldn't keep caring for both of them. (They moved in together.) Thank goodness she made this decision at the time she did, because I doubt she could do so now - her reasoning skills are fading fast.

    Mum cannot accept that she is "losing her marbles" (or going "nutty", or any of the other quaint expressions of her generation) even though she sometimes gets very distressed about "being stupid". We stick with the euphimism that she has "some memory problems" which she has convinced herself are the result of a blow to the head that she sustained when she broke her hip at Christmas time last year. Even though there are patients all around her in various stages of dementia, she denies that she is anything like "these poor nutty souls"!!!

    Someone said recently in a post that many people of this generation have trouble with accepting the diagnosis because they relate it to being "mad" - and all the connotations that can have for those who have seen some pretty dreadful things happen to mentally ill people in the past. I totally agree.

    As far as YOUR Mum is concerned, I agree that it is "different strokes for different folks". If your Mum can cope with knowing she has a diagnosis of AD, and what this may lead to, then it is an idea to discuss with her now what she wants in the future (eg. nursing home? interventions in life threatening illness? etc.).
    Whilst this may sound a bit drastic (and may well be too soon as you are all still reeling from the diagnosis), please consider discussing these issues (even in a third person context) with her while she can still give a clear idea of her views and wishes.

    On the other hand, if she's like my Mum (and plenty of others!) and simply cannot accept an AD diagnosis, then it is a case of playing along with her. Many of us have found this "playing along" very hard to do because we feel it is not respectful of our parents and does not reflect the relationship we have with them. Sadly, I think we all learn that insisting on "the truth" and correcting misapprehensions or misunderstandings is no longer appropriate. This is because our family members with AD are now losing their ability to reason, to be realistic, pragmatic, etc. in the ways in which they once were. By insisting on "the truth" we often end up confusing them, agitating them, upsetting them and causing (unnecessary) conflict both with them and for them.

    As the Director of Mum's Hostel says, "If they think they are catching the tram to Bondi, join them on it". (Historical note: No trams have run to Bondi for about 40 years!)

    The "silver lining" (if there is one) is that you have time to see how the disease develops for your Mum. It varies hugely from one person to another, so your Mum may be quite different in the progress of her illness to my Mum, or others. You will gradually see how the illness progresses with her and make adjustments accordingly.

    One very hard thing is that AD patients can have good and bad days. Especially early on in the diagnosis you might feel she has been misdiagnosed, because she has days (or even weeks) of being just as she always was. Then she may have a bad day or days. This can be very disconcerting and upsetting.

    We will be thinking of you and sending you our best wishes. We don't always agree - but the world would be a duller place if we did! Take the help you find useful and ignore the rest. Come here for a "whinge" or to share your triumphs or tribulations. It is a strange sort of a family - but it really is like a family! And everyone here has a pretty good idea how you feel.

    Thinking of you. Nell
     
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I hope we have not scared you of Amanda ? , as I wonder how you are feeling.

    Yes Nell :) we our like a family, don’t all family have disagreement, so we end up , agreeing to disagree.

    In addition, I found what May said very interesting
    Sounds like a good idea, how can I do that cheaply?
     
  16. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    Well I'm overwhelmed by the response. So much encouragement, so much wisdom, so much kindness plus, of course, so much good advice.

    It's 10 am now and I'm just off to see my mum. I still don't know what I'm going to say to her but have decided to do what comes naturally at the time. As far as discussing the diagnosis is concerned, the doctor told her that she has Alzhimer's and will be confirming this by letter so there is no point in me beating about the bush - she's going to see it in black and white in a day or two.

    Thanks for the advice about POA/EPA. We actually already have this - I did it about six months ago when I first saw the obvious signs of problems. We just got the document and she and I signed it and had it witnessed, but I haven't taken it to a solicitor. Should I? We did one for my partner's mum and we never took that to a solicitor. Everyone recognised it - bank, utilities etc.

    However, now I've taken over the paperwork side of mum's life I really need this in place. I've been spending time doing it at her house and constantly have to call her to the phone to have her permission for them to speak to me. I made an appointment for us to go to the bank this week to show them the document. Trouble is it's coincided with the diagnosis now and she's put the two together and feels she's losing control. I made a right mess of that one! That's why I'm going over this morning, to try and explain and reassure her.

    One thing I could ask please. I've recently been typing out things for my mum, like after going to her GP (what he said etc.), so she can refer back to it when she's forgotten. She really seems to like this and finds it helpful. It also saves me saying the same thing over and over again and means I don't have to answer the phone 10 times a day. I'm just a bit worried about putting the not so good news on paper as it may be rubbing it in if she reads it over and over again. Some things might be good to forget.

    Thanks again everyone for all your help. I'm sure I'll be back over the coming days/weeks/months!
     
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    #17 jenniferpa, Nov 6, 2006
    Last edited: Nov 6, 2006
    Margarita - see here for the form
    http://www.guardianship.gov.uk/downloads/Make_An_EPA.Web.pdf

    Amanda
    I don't think there is any need to take it to a solicitor - you can register the EPA yourself. It is an EPA isn't, not simply a POA? The only reason I can see for involving a solictor is if you had to get copies notarised. Having said that, some people seem to manage O.K. without registering it, but my personal view is that that is unwise, particularly if you have anyone in the family who might take issue with your actions down the road. Also some institutions are considerably more helpful than others (to put it mildly)

    With regard to writing things down so that she can refer to them, only you know how this is going to affect her. My mother (who has had several strokes) was getting more an more distressed becasue she couldn't remember what had happened, and couldn't understand why she felt as she did (she consistently thinks she's in her 60's or less - she's actually 89) In the end I made a notice which I attached to her walking trolley that says "You're 89 and have a had a stroke" and my phone number so she can call me. She finds this less distressing than wondering what's happened.
    Jennifer
     
  18. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    Jennifer

    Thanks for your advice on that. I checked and it is an EPA. I also had a look at the link you showed for Margarita and it's the same document as I have.

    I spent a couple of hours with my mum this morning and we confronted all the issues, the diagnosis, my 'private' time with the doctor, the visit to the bank etc. She was amazing. Much less fazed than me! She wanted to know everything and was really pleased with the sheets I'd typed out for her. I told her everything face to face first, then gave her the printed version to keep for referral. After we'd finished talking about the serious bit I asked her how she was feeling about it all and she actually managed to make a joke of it. She said she was feeling a bit battered, I asked "What, like a piece of cod?" and she said "No, more like a steak"!

    I shall keep a close eye on her over the next week or so as I'm aware that when she's on her own she may dwell on it a bit and I realise there can be a danger of depression. She has never been prone to it thank goodness so I'm hoping she will remain upbeat about it.

    I'm getting married next year in Greece and she's hoping to come to the wedding so we have plenty of good things to look forward to and discuss.

    Thanks again for all your help everyone. Your support has been fantastic over this initial 'wobbly' stage and I feel so much better already.
     
  19. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Amanda1954

    I have to say it is so nice when we have members posting positive outcomes that will serve as a possible solution for someone else in the future. Sure, it may not work in their case, but it gives an option to be considered.

    That's what we all need, options, and as many that have worked as possible. We can then try and judge what works for our loved ones.

    Thanks, and kalispera

    [do tell: is there a particular reason why you will be married in Greece? And whereabouts? Greece is one of my favourite places on the planet!]
     
  20. Amanda1954

    Amanda1954 Registered User

    Nov 5, 2006
    59
    Leicester
    Kalispera Bruce!

    We have become addicted to a tiny island in the Dodecanese. Halki, just off the west coast of Rhodes. We have visited there 8 times now and have made many friends. My partner, Harry, proposed to me there in September this year. We've both been married before so given that it has to be a civil wedding we thought it would be nice to have it there. Many of our friends are hoping to join us too. It's going to be October next year on our 10th visit (we're going in May to organise everything).

    I'd better go now. I don't want to be accused of highjacking the thread to talk about my wedding!

    Amanda

    P.S. We've only been together for 19 years so obviously Harry didn't want to rush into anything!
     

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