1. elle2

    elle2 Registered User

    Jun 7, 2008
    #1 elle2, Jun 8, 2008
    Last edited: Jun 8, 2008
    Hello everyone,
    firstly I hope Im typing this in the right place!
    My name is elle(2). Six months ago my husband and I became fully envolved in caring for my aunt who has alzheimers.She lives 200 miles away from us and flatly refused to move. The gp and neighbours were very worried about her. So after alot of discussion we have changed our lives completey and my husband has moved his job near to her, and he stays with her monday to friday, and then she comes up here at weekends.I have a business up here so theres no question of me going down full time, Im going to be honest as you all seem like a really caring bunch, that makes me feel very guilty.
    Over the 6 months we have come to realise just how bad she is, I now have a signed letter fom her saying Im alould to discuss her with the gp etc. That has helpt as she dosent remember she has been. We have now got The memory clinic going in on monday, my husband is going to be there too. Im wondering what to expect? Im keen to get her envolved in local lunch club centre Ive been told about from your helpline, again can anyone give me some feedback?? I guess I generally need help and support, Im frightened I might be making things worse sometimes as she is conveniced nothing is wrong with her memory and then asks me the same questions on a 5 min cycle. Should I actually just be answering all over again or should I, as I have been, saying, "like I said a couple of mins ago...." Im sorry all these questions!
    One thing I do want to make very clear, is she is clean and tidy and the house is cleaner than mine! Its just she is now not wanting to go out because she might not remember where she lives. She eats properly etc.Her memories of certain events in the past are clear but repeated alot. But when we take her out to lunch she is unable to make a decission what to have. We are both very worried and really need some help and advice on this.
    Sorry for the long post, but Im just so relieved to have found you all!
    all the best
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Elle

    It is so good of your husband to relocate to help your aunt. Don`t feel guilty, you have worked out between you the best way to help her, and come to an arrangement that suits you both.

    Every Memory Clinic seems different so I have no idea what your aunt`s will involve. What I would do is write down all the questions you want to ask so you don`t forget anything.

    Please let us know how you get on on Monday and what decisions have been reached.

    I would ask you to answer her questions with as much patience as you can muster, however many times they are asked. It will only make your aunt feel even worse to be reminded she has just asked the same question.

    I felt so sad to read that. I can only imagine how she feels.

    Please believe me when I say you have found the right place for information and support.

    I am moving your post into the main support section as more members will read it and be there for you.

    Take care xx
  3. elle2

    elle2 Registered User

    Jun 7, 2008
    thank you

    Im very impressed with the quick reply and just knew I would put it in the wrong area, bare with me!
    You are right, when I see her struggerling with her thoughts I want to weep. I am a very tollerent person and I sit and listen over and over, but Im only human. What I try to do is make her laugh, my husband and I are great jokers, and to be honest, up until 6 months ago she was being cared by a member of my family that was only going to see her for two hours every two weeks, he misled us as to what was going on, he has now died and we have found out alot of her money is missing. So we have had all that to cope with too. Not nice. Now I think she is having a wail of a time, she adores my husband and we dont let her put her hand in her purse for anything "on our watch" so to speak, we take her out for dinners and I cook and spoil her up here, so there is a happy side to all this. The down side is I had to cancel a fitted kitchen she brought last week for £8000! she hadnt a clue she'd brought it.
    All we want to do is keep her, where she is happy, in her own home for as long as possible, but we do need to be sencible about it.
    once again many thanks, Ive so many questions but I dont want to hog the board!
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Elle

    I just wanted to welcome your to TP.

    I agree with Sylvia, you and your husband are doing a grand job, looking after your aunt.

    Don't worry about hogging ther board, we all had lots of questions when we first joined, and most of us have now been through the same sort of symptoms as you are encountering. Anything you want to know, just ask, someone will almost certainly klnow tha answer, or know where to look for it.

    All the best,
  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Hello Elle:

    I have just read your post and think you and your husband are marvellous to be doing so much for your aunt.

    She does seem to be doing quite well. I am sure you are bursting with questions but I will start with one. Has the consultant got as far as Aricept? If following the memory check it is considered she is not ready for it - then I would question and try to force it a little.

    Most of us feel that the earlier one gets aricept the better, but you may have read the NICE (not so nice) reports which indicate that it should only be issued in the later stages. It is possible for the consultant to ignore that ruling!Unfortunately some people are unable to tolerate it but with my husband it has certainly helped him. You will find it is the consultant who will initially prescribe and then pass the repeats over to the GP.

    I will not ramble more as it does get confusing.

    I know you will get much support here.

    Best wishes Jan
  6. elle2

    elle2 Registered User

    Jun 7, 2008
    hey, we had the mental health people out and it was a complete no no. Please dont ge me wrong, Im sure they are brilliant but my aunt totally refused to acknowledge her memory was bad,,, I need some help and advise here...anyone??? I could weep with fustration.
    yours elle ....2
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Elle, you must start a diary.

    List all the behaviours that concern you and your husband, and make sure they are timed and dated.

    Keep it for a month, then get back to the GP.
  8. May

    May Registered User

    Oct 15, 2005
    Hi Elle welcome to TP.
    So sorry you are having a bad time ( I am thinking of the 8000 pound kitchen:eek:) with your aunt. Think you are amazing how you have organised your lives to help her. Forgive me for talking practicalities , as Grannie G said, you need to keep a diary and speak to her GP asap when you have listed your concerns.You speak of financial matters in your post has someone got an Enduring power of attorney (it has different name now which escapes me for the moment, it's been a long day today:eek:)for her? If not I would suggest that you take a look at the Court of Protection website for information,this is one of the first areas really that needs taking care of. The factsheets on this site are an excellent source of info, but people here are so willing to share their experiences. Ask away if you have questions, someone will certainly answer. Do come back and post and let us know how you are. take care.
  9. Chrissyan

    Chrissyan Registered User

    Aug 9, 2007
    N E England
    Hi elle2 welcome to t/p sounds like you & hubby are a marvellous job. :) Just a thought I doubt your aunt went looking for a kitchen. Have you thought of removing her from the phone book, registering her with the telephone preference service: http://www.tpsonline.org.uk/tps/, the mail preference service: http://www.mpsonline.org.uk/mpsr/ & putting a sign up saying no door to door selling etc etc?
  10. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Hi Elle,

    Don't know where you posted it first, but I assume this is the "main board", anyway the moderators on here are fantastic at sorting people out.

    Grannie G had a good idea, keep a diary. My mum didn't realise what she was up to (and neither did we till it came to a crisis point), so do keep records.

    How fortunate/caring/hard work or whatever for your husband to move closer to her, and bring her up to you at weekends. It sounds like hard work, Elle, don't be surprised if it starts to get too hard, especially if you want a weekend away (entitled to it) or need to work in your business over the weekend. My advice would be don't get into too much of a habit if you can avoid it. But then you will feel guilty - we all know about guilt on this website, and the message is - no guilt allowed! The fact that you are on this site and telling us your situation is absolute proof that you care. So no guilt there. And do not think you have to be perfect, you are allowed to feel cross, irritated, agitated and fed up, without any guilt for having those feelings.

    Let us know how you get on at the memory clinic, my experience is that they just tick boxes "do you know who the prime minister is" well most people will still say Tony Blair!

    Much love

  11. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    Is it a Lasting Power of Attorney? Not sure, yes it is. Elle, I think you need to get that sorted pretty quick.

    Elle, do not worry about "hogging the board", no such thing is possible. People who are not able to help you can pass you over and go on to someone else they feel they can help more. So hog all you want.

    My mum also denied anything was amiss with her, still does, but Aricept has "settled her" I feel, she has now been on it a year, and her consultant must have been one of those that ignored the guidelines, which I am glad about!

    I admire your aim to keep her in her own home for as long as possible, and thank goodness your husband is able to help with that, but there will probably come a point where it is either too much for you to manage (no guilt! remember) or she isn't actually any better in her own home that she would be elsewhere.

    I say one thing, she is very lucky to have a niece like you who clearly cares so much!

    Keep us informed.


  12. elle2

    elle2 Registered User

    Jun 7, 2008
    Thank you everyone, from the bottom of my heart.
    Im sorry Ive not replied, truth is I actually head up a web site that helps addicts and we have been very busy.

    The diary idear is briliant! Funny enough I tell my members to do that in recovery, isn't it the way you cant see the wood from the trees sometimes:rolleyes: I will get right on the link someone kindly suggested to remove her from sales calls, although they are meant to be clamping down on those somehow I cant see it happening soon.
    We are trying to be sencible, I totally understand we need to have "us" time and in fact my husband is coming up alone this weekend, poor man phoned as she had "a face like thunder" this morning and asked him "why she wasnt welcome anymore" he found it very difficult to deal with. yet I phoned her two hours later and she didnt mention a word. guess Im not saying anything that any of you havent gone through!
    As regards the people from the mental health, Im afraid the only way I could get her to consider a further accessment was to fib a bit and say it was regarding the dizzy spells. It seemed to work, as my husband commented she seems okay with appointments but doesnt want to know what they are for. I think the bottom line is the total fear of being "put away" and we, after getting some brilliant advise on here, are trying to come at this from a different angle. I would rather sit and have her repeat things than see her get confused and upset that she might get to the point of not wanting to talk. I find that if I keep the topics short and light hearted that really works too.
    So at this stage we are now waiting for another appointment, theres been no mention of the drug you recommended, am I right in saying thats the one all of the fuss has been over?? sorry Im new to all this, when i did speak to her gp and mentioned it, I can remember him impling she was too bad for it to work.
    regarding her will etc, my uncle who died, was in charge of that. We have mentioned it and I do know we need to sort something out, but its just such a horrid subject to bring up. She has said she wants me now to step in, but then she forgets! I am aware we need to do something.
    Anyway, once again, thank you for making me so welcome, and please excuse my style of posting...all over the place:D
  13. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Elle

    You & your lovely husband deserve MEDALS. You are brilliant. Need I say more? I don't think so.
  14. Dennis Brown

    Dennis Brown Registered User

    Jun 11, 2008
    #14 Dennis Brown, Jun 13, 2008
    Last edited: Jun 13, 2008
    I'm a New Guy Too!!.

    Hi Ellie, This is my first shot too and I hope I'm doing this right , My wife Ivy was diagnosed with Vascular Dementia and Alzheimers about 3 years ago although it had been clear for some time before that things were wrong,Not washing, undies on top of clothes, double sets of clothes etc.I now have carers in morning & night but (I have to do everything else , cooking cleaning,washing. I won't have it any different though as we have been married 54 Years.
    The difficulty I have is Medical care as since we had the condition diagnosed I am supposed to know when things are wrong, Ivy can;t tell me!!.I wonder if any one else has this problem.Sorry to ramble on but It's nice to talk to someone, All the Best, Dennis B.
    P.S. I don' knpw how to get on the general post board at the moment so hope someone can help, perhaps I'm just THICK!!!
  15. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Dear Dennis,
    Welcome to Talking Point.
    We are all here to help in anyway that we can.
    My husband was diagnoised with AD when he was 58 and as a disabled Carer it was very hard.
    Now he is in a E.M.I. Unit and has been for 13 months I miss him so much.
    More people will come on line and lots of us are still up into the early hours.
    Best wishes
  16. citybythesea

    citybythesea Registered User

    Mar 23, 2008
    coast of texas
    Welcome Dennis and Elle

    Dennis welcome to TP. There are lots of people here who can sympathise.

    Elle welcome to TP also. I feel for you and your husband, you are both angels in disguise...so many would not do what you are doing for an aunt or uncle...only parents. All the advise is wonderful and I would not disagree with. I would suggest if possible thinking about what you plan on doing in the long term. What you are doing is very hard on a rel;ationship. I would suggest that if you plan on her coming to live with the 2 of you eventually to start it now. My suggestion would be to have her come visit for maybe 2 weeks. She sounds as if she still has the compassion in her and would like to please both of you. The 2 weeks may be all it would take for her to become comfortable in your home and then gently suggest she stay there so it is not such a strain on you and your husband. If this were to work out then your husband could transfer back home and the 2 of you could work together at getting day help for her (usually a care center, to help her make friends) This would also allow you to possibly find someone that could come in for a few hours a week to stay with her or if she is capable you and your husband could have "dates" to stay close while your aunt stays at home by herself for a few hours.

    Mom was a gentle soul and stayed that way. She never wanted to problem me and I wanted to keep her in her home as long as possible but when it came time for her to come live me she understood when I told her it was needed for her safety and the practical side of my family. Alzheimer patients can become very disoriented and the best thing to do is in early stages set up practical care. If that means at home with you then go ahead and do it now. The sooner the better...the less she will have problems with making adjustments to a new home.

    The legal side I'm going to leave to you guys in the UK. Your socialized medicine is so different from our pay as you go medicine here in the US.


  17. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    North Derbyshire
    I don't want to Hijack Elles post, I think we are all a bit confused as to where to post things, and we will just do our best until one of the moderators moves us.

    Hi Dennis.

    You are definitely not THICK, or if you are, I am in the same category, cos I never know how to decide where I should be posting, and I am probably 30 years younger than you. Someone will sort you out, everyone on here is so caring.

    Yeah it must be hard to know what is wrong, my mum often says to me "oh things need doing" and when I ask what they are, she has no idea.

    I think, probably, Dennis, you would feel better if you were one step ahead of Ivy in her needs. So tell us something about her. What sort of person is she? Does she read, does she enjoy t.v., does she listen to the news, does she knit or sew, does she attend church, lots of things there. Maybe if some of us can see some connection with her hobbies and interests, we can help out.

    Just wanting to help.

  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Hello Dennis.

    First of all, if you want to start your own area for posting it`s called a Thread.
    Click on `Support for people with dementia and their carers` and you will get the main board.
    You will see four `titles`

    I have memory problems
    Younger people with dementia
    After dementia - dealing with loss
    Lesbian and gay carers

    Then you will see a blue tab saying `New Thread`

    Click on this tab and you can post.

    As far as your worries about medical care Dennis, do you have any carers coming in from Social Services to help you?
    Also you could do with having a word with your doctor about your worries.

    Please let us know how you get on. It is very hard caring 24/7

    Take care xx
  19. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Dennis, just wanted to welcome you to TP.

    I cared for my husband John at home for seven years. Sadly, he's now in an EMI unit because his mobility and balance have gone. I visit him twice a day to feed him, and he sleeps most of the rest of the time.

    Please start a new thread and tell us about yourself and Ivy, you'll find lots of support.

    Best wishes,
  20. elle2

    elle2 Registered User

    Jun 7, 2008
    Thank you for all your messages and a big hi to dennis! You arent alone I posted in completely the wrong area, and here I am a host of a web site too!! these guys are fantasic and sure have taken alot of weight off of my shoulders with help and advise. I feel a bit bad that Im not able to get on too much, but Im very busy with supporting my own site, that is very close to my heart.

    Small update from us, firstly my aunt lost all track of time over the weekend and had a row with my poor hubby on monday morning, demanding that he drive her up here, she thought it was friday. After a few very lenghy phone calls, I reassured her she was welcome but I had a trainning course to attend the past weekend, and we didnt feel it was right to live her in an unfilmilar house. We also have 2 beautiful tonkinese cats, that only go out into the garden supervised and have to hide the keys locking us in each night, she has gone to let them out so many times, Ive given up telling her not too.
    Well a letter arrived from the mental health people, her score was 23 out of 30, now from what I understood thats actually quite high?? Im a bit shocked as she clearly is very confused and is at the point she is frightened to go out incase she cant remember where she lives, that mood, I have to be honest swings from that to firmly saying we are liers, and she never said that. Pretty heady stuff to handle, but once again Im sure alot of you have had to deal with worse. So back to the score, they are still prepared to do rather tests but didnt give a date for this. My question to you all is, do you feel the scoring was better due to the fact she has total support from us? Does anyone know how this scoring works. The sinic in me is wondering if they only give you help if you really need it. Sorry to be blunt, but Im just so concerned we arent doing enough for her during the day.
    My other question is, I know nothing about a carers allowance, our situation means its actually costing us alot more money to help her. She has no concept of money at all.
    I do truely apologise for all these questions but we are so out of our comfort zone here its untrue.
    my admiration to each and every one of you carers out there, you are amazing.

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