my mother has probable alzheimer's

Discussion in 'ARCHIVE FORUM: Support discussions' started by Lulu, Nov 28, 2004.

  1. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    My father died a year ago, leaving mum quite unable to cope alone. I had known something was amiss with her for a few years -but couldn't put my finger on it, eventually putting whatever it was down to 'old age'. (she is a little over 70). Her short term memory is very bad, and it is hard for me to believe that somebody so socially normal, is actually struggling so very much with every day life. I now organise almost every aspect of her life.

    We have been to the memory clinic and she has been prescribed Aricept for what they say is early stage alzheimer's. Some days I believe that they are mistaken; others I just know she is very ill indeed.

    Back in Februaury her MMSE score was 23, then 21, and now it's 20. Can anyone throw any light on these scores? Is this still early stage, or are we verging on mid-stage? Mum still manages to live alone, close to me fortunately, but I am supporting her in many ways. She is unable to plan, shop for, or cook her own meals. Food goes off in her fridge ... all sorts of things which just aren't her. She can't manage her finances. She also is aware that this is happening, which distresses her.

    I am still trying to find the time to come to terms with my Dad, now my Mum -and in addition, I suspect that others in the family believe I am imagining her problems!

    Hope this isn't too long. My first time at this sort of thing. I was wondering if anyone is at a similar stage, or if anyone remembers this stage, and how it progressed. Any more info on MMSE would be welcome. Thanks
     
  2. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    785
    Buckinghamshire
    Welcome

    Dear Lulu,
    Welcome to Alz TP! You are in very good company indeed.
    Let me reassure you: you are not imagining things. The up-and-down symptoms of AD are absolutely typical, one minute they are in a world of their own, almost unreachable, the next minute or the next day you wonder whether you were 'seeing things'.
    Only someone who is in very regular / daily contact with a person who suffers from AD is likely to realise the extent of the problem. My husband has been on ARICEPT for 4 1/2 years now, and it has taken a very long time to convince some relatives that he is not just selfish / unkind / antisocial / awkward etc., and that my being lenient and forgiving is a necessity for survival, not just a weakness on my part.
    The root for all this confusion lies in the fact that people who suffer from AD seem to skip from one degree of lucidity to another, and also react to different situations in different ways (don't quite know whether that makes much sense ...). They devise many ways of covering up their difficulties, and they are also able to switch from apparent deep depression to bright and bubbly personality within moments: much of it is an amazing act in order to save face, and I can often only stand in admiration ......
    Don't be put off by your relatives - support your mum as much as you can, and lean on any support services you can find, they can be a godsend.
    Take care of yourself. Regards, Carmen
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Lulu
    my wife has been on Aricept now for 7 yeqrs,and at times even now I wonder does she rally have AD?
    She does, I do not kid myself anymore.Your hubands behaviour patterns are very similar to my wife's.
    Do read the leafletsand do not hesitate to come back to the site if you feel alone (typical feeling) or worried,there is nearly always some on on line day and night
    Best wishes
    Norman
     
  4. Jude

    Jude Registered User

    Dear Lulu,

    My father has been taking Aricept for just over 4 years and my mother takes Ebixa.

    It can be very difficult for visitors or other family members to realise the extent of dementia if they are not in daily contact. My parents are brilliant at 'masking' to the extent where a casual visitor who pops in for a hour would have great difficulty in picking any symptoms.

    You certainly aren't imagining this or exaggerating facts.

    Jude
     
  5. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    It has ben very frustrating, believing people think you are exaggerating these difficulties. How can such a socially capable person, who seems much the same as they have always been, be so incapable in support of herself? We wonder sometimes that if we were suddenly to disappear for a few days, what Mum would do? Would she wonder where we were, feel hungry, go to the shop and then cook herself a meal? I very much doubt it, as she can't seem to do this anymore. Yet some imagine it's because I do these things for her that she now can't do them for herself! (This time last year she was still trying to do these things with my support) All this wears my confidence down.
    At the moment, Mum stays in her flat and does virtually nothing until I phone or call her with prompts, telling her what to do. She eats with us 4 nights of the week, and I buy in frozen meals for the remainder. Left alone, she would eat little -in fact she tells us that she is never hungry. Once the meal is in front of her, she eats well.
    Does all this sound familiar?
    I am very sorry to learn about your parents, and I think my problems are tiny in comparison. Thank you for writing.
     
  6. Chesca

    Chesca Guest

    Welcome to TP Lulu. Sorry to take so long to reply, I have just found your post.

    As far as I know, the MMSE is a very abstract and limited form of diagnosis taking about ten minutes and for what it is worth I wouldn't set much store by it. I think it's used more for clinical research purposes, which is good, but is not of much use in defining the status quo for the patient or carer. This is only my opinion based on experience. It serves to test the patient's cognizance measured against their age in relation to the years they undertook full-time education and the points used to calculate the deterioration, or something like that. It seems to be a very inexact science to me, but what do I know. The following site may provide further information:

    http://www.alzheimers.org.uk/How_is_dementia_diagnosed/Diagnosis_process/info_MMSE.htm

    The one common denominator with AD is that there is no common denominator; its effects are as individual as is the sufferer.

    The most significant measure of judgement in all of what you are saying is the level at which Mum is now not coping at all with the daily dealings of life. I'd recommend you disregard others' perceptions of Mum's state; sometimes people don't want to see what's in front of them in case they have to get involved - and that will never do for some! She will have developed her own coping mechanisms for dealing with social situations which hide the reality, but unfortunately not forever.

    You are the one on the spot and in a position to know the real situation. Are you being provided with outside support, via a social worker, any outreach worker? You need lots of advice and pointing in the right direction for financial help - attendance allowance and the like, etc, a carer's assessment for yourself if relevant. They need to be aware so they can set in motion suitable care packages for Mum and to enable you to carry on with your life with a little less worry. This will take some very gentle handling, Mum will be naturally in fear of what is happening to her - none of us like to think we are not coping, after all is said and done.

    You have taken one hell of an emotional battering over the last 12 months and despite any opposition from Mum (and there will, no doubt, be lots) you need to have some pressure taken off. You cannot live two lives, run two homes, without some impact on your own health and peace of mind.

    I don't know if this has been of any help at all as it doesn't answer the questions you ask - those who know me will be heard to mutter: since when did that stop her?

    Take care and be kind to yourself - you deserve it. And don't forget to come back soon if only for a chat.

    Kind wishes
    Chesca
     
  7. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Dear Chesca
    I have been trying to contact the Health Visitor this week. We met her a few months ago when she told us about some of the things available, but at that time, I think we were all denying what was happening. Dad had just died and I only wanted to do what he would have done for her (we now know he must have been doing everything for her) -and it felt as though I was being a 'traitor', sending her off to a Day Centre etc when she didn't want to go. But now I can see that with having to support Mum in so many ways, I just cannot entertain her full time as well, and I need to find a variety of things for her to do, including a Day Centre if there is one.
    So I shall speak to the HV about that, as well as asking how to go about an assessment from the Social Services.

    Your letter has helped, as have the previous ones. I'm still trying to find my way around this site, as well as use the computer, so forgive me if there are errors.
     
  8. Jude

    Jude Registered User

    Dear Lulu,

    Don't worry about expressions of doubt from others. You know the situation yourself. It's not only the non-eating - you need to think about safety aspects too since AD sufferers have no fear or concept of danger. Read all the fact sheets which are very helpful. Forewarned is forearmed.

    Get as much help on board as early as you can. Don't try and go it alone because you really will burn out at some point. Ask as many questions as you need to here on TP. I wish this forum had been available when my parents were first diagnosed, because it would have saved a whole lot of blundering around in the dark and feelings of isolation.

    Keep in touch and good luck.

    Jude
     
  9. Kay

    Kay Registered User

    Nov 15, 2004
    7
    Co Durham
    Hi Lulu

    Like yourself I'm new to all this as well - my Mum has had this test and has been diagnosed with early AD but frankly i was surprised at her borderline score of 24 as she can no longer look after herself ie cooking and shopping managing money etc and has deteriorated quite quickly - in a 3 month or so time span she went from being able to cook a poached egg to not knowing where to start - I think the actual score depends on what sort of day she's having on the testing day - My Mum was borderline but she must have been really concentrating hard to acheive it. I think it gives a guildline and means nothing more than that.

    We are still waiting for a visit from the community nurse and her suggestions - have you had a visit from them?

    There was a program on Radio 4 last week called Choice - it's about wether to tell your loved one that they have AD or not and is the experience of a lady who was a newspaper editor. Its worth listening to if you go onto the BBC website it should still be available for you to listen to.

    I don't know whether it will help you or not but it covered some things that i wasn't aware of being new to this.

    Don't forget to take care of yourself too.

    Kay
     
  10. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello Kay
    It was good to read your post, though of course I am very sorry to know that you too are going through much the same.

    No, we haven't yet mangaed to get through to the District Nurse who visited us several months ago. No doubt she'll eventually get back to us, but meanwhile I am wondering if I should just go ahead and refer ourselves to Social Services to get an assessment of everyone's needs.

    My mum is the same regarding cooking etc. This time last year she could at least try to put a meal together, even if she struggled. Now she can't do that, and even with a recipe in front of her, she can't seem to follow it. If she were left alone, I think she would starve. She seems not to notice what is right in front of her. Food can be going off, and she wouldn't take action. Do you find this? Does your Mum still live alone? Mine does, but she now lives very close to us so it's easier to keep an eye on her. Even so, it's turning into a full time job. How long she will be able to stay there I don't know. Does your Mum still go out alone? Mine just stays put, where it's safe!

    Thanks for the Radio Programme on R4 -in fact I heard it. I told Mum her diagnosis straight away, as I believe the Consultant had told her anyway. But I think she has forgotten about it. Does your Mum know?

    When did you first realise something was wrong with your Mum? What did you do? I am so interested to know everything as you seem to be what they call 'early stage' too. Is it mainly her short term memory that is the problem? I have to write notes for my mum and even then she forgets to read them sometimes. Yet other times, she remembers quite well.

    The D Nurse suggested a Day Centre when we saw her back in the summer. We didn't take it up because Mum would never have gone and also I think I was denying it was all happening, and it would have broken my heart to send her off on a bus to a Day centre. However, I feel now may be the time to do it because caring for her is one thing, but entertaining her all day, every day is a huge burden. I know that when I am not there with her, or she with us, she does very little -and she will often say things to make me feel guilty. I could actually spend all my time occupying her, but the minute she is left, it's all forgotten and she's bored all over again.

    Please do write again if you have the time. I am very interested to know about your circumstances. Lulu
     
  11. Kay

    Kay Registered User

    Nov 15, 2004
    7
    Co Durham
    Hi Lulu

    Yep I know just how you feel when I recently first posted a question to talking point it meant so much that people took time out to reply I was a tad overwhelmed but it does help. In answer to your questions my Mum does live alone (my father died 30 years ago and she has been living alone since) and is now 76. I first started noticing subtle changes mainly a fixation with time - ie constantly asking what time it was when we were on holiday several years ago, I originally put it down to her not listening to my answers but I came home wondering what was going on. As time has progressed my Mum seems to be regressing into the past more and more - her short term memory is very poor and it seems as though her thought processes get stuck in a rut - for instance she will tell a story about my father (which we have usually heard before - sometimes she surprises us with a new one but these days this is getting rarer and rarer) its almost word for word the same everytime. Having done this she will then start again telling exactly the same story - what I find most difficult is not saying "Mum you've just told us that story" what I try to do is change her train of thought with something like "do you remember....." not always successful as sometimes when she gets into what I have now started calling "a loop" its difficult to get her out of it.

    Her Doctor has told her she has a problem with her memory and that she mustn't drive anymore but I don't think he's mentioned the dreaded "AD" words - my Mum has spent years looking after people with dementia in her nursing home. I guess every case is different but my mother has always been a terrible worrier and if we told her she had "AD" she would get more depressed than she already is and really wouldn't benefit from this information even if she remembered it. She basically says she's alright (far too much in my opinion so I reckon she knows but doesn't want to admit it) My Brothers and I have decided that it would take some quality of life away from her (she would be so busy worrying about us having to care for her than herself!) so we are not going to tell her. We know from her treatment of the people in her nursing home (which is now closed!!) how she wanted them to be treated with dignity and respect and this is how she would want to be treated. Its been a tough decision but I think we have made the right one.

    We have the added problem that none of us live in the same part of the country let alone the same town, so a lot of the day to day stuff is done by her friend (who has experience in looking after the elderly) who she met when Mary's own mother was put into my mother's nursing home - confused yet??? Mary and Mum became friends then and have remained so for the past 10-15 years. We are in the process of setting up some sort of rota system to relieve her of some of the pressures involved in having to entertain and do all Mum's thinking for her.

    We write on the Calendar reminders of who she is to visit and when and we collect and drop her off between us to give Mary a break. I struggle to keep her entertained but am going to look into other forms of treatment mainly to help her relax - i was reading in a book that some AD patients respond well to Aromatherapy so I might try that out - if anyone has done this before let me know what you think.

    Sorry Lulu seemed to have hijacked your thread - didn't mean to but maybe its something that your mother will enjoy - i have found that there is so little that my Mum wants to do - any suggestions being met with OH NO I couldn't do that or Oh No I only go swimming on a Tuesday and other such excuses.

    My advice is to take all the advice and all the help you can get - it is vital that you get some breathing space too, remember that you're important too!!!

    I'll let you know if I can think of anything else that might help - if you want to chat you know where I am!!!

    Take care

    Kay
     
  12. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello (again) Kay

    Well after a rather bad day yesterday, wondering how on earth this was all going to end, I have felt a little spring in my step today since reading your 'posts'. There is someone out there with more or less the same problems. However, it must be so much worse for you because you are having to care from a distance, and I can imagine the strain that puts on you. Mary sounds like a wonderful friend.

    I used to be a nurse and remember only the final stages of this disease, remembering all those poor souls on the geriatric wards. But this stage is proving to be a very steep learning curve for me -I had no idea. Also, having worked for various nursing homes, some good, some bad, has made me think that I would try to care for her throughout -whatever - but I now realise that this may not happen. Maybe it will get to the point where I would welcome a nursing home with open arms!

    Six years ago, Mum and Dad were visiting us when Mum became ill. Whatever it was didn't last very long, but was sufficiently strange for me to write to her GP about the 'episode'. From that day, she was never quite the same, though I couldn't quite put a finger on it. Then we noticed her memory lapses, putting it down to 'old age'. She lost a lot of weight. When Dad was diagnosed with cancer 2 years ago, we began to ask ourselves how on earth she would cope alone ...and it has gone from there. She was unable to cope-absolutely. We had to take over her life completely.

    Since Dad dying last October, I have learned that all the rest of the family living close by to my parents (I live some way away) were never aware of any problem, that it was only me who seemed to find something amiss, and now, despite the diagnosis, people still don't belive there is a problem. They believe that I do too much for her, that the bereavement has caused all this, and given time she will be fine.


    You know, my Mum has always been a worrier, too. She is constantly anxious, even now, when I tell her there is nothing to be worried about, but she never can say exactly what she is worrying about. Because she has always been a worrier, is this then just a habit?

    Does your Mum take Aricept? Has anyone said how long she will be taking it, if so?

    Have you set up a Power of Attorney? When Dad died, Mum re-made her Will and the solicitor advised we made out the EPA. Although I haven't made use of this yet, it is we who organise all her finances.



    Sorry this is all so 'bitty', hope you understand it. Not sure if I am using this site correctly ...Take care. Lulu
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Lulu

    if this conversation is working for you [and others], then you are absolutely using the TP site in the way it should be used.

    I was interested in the comments about disclosure in this thread. Whereas I never ever told my wife that she had Alzheimer's, I did tell her that we were investigating her 'memory problems', and that appeared to be quite satisfactory. I think telling her the full story would have distressed her more than I could have coped with.
     
  14. Chesca

    Chesca Guest

    Dear Lulu

    Of course, you are using this site correctly. I think Nada moved your post to this Forum as more people will now probably read it and be able to respond.

    I think I would approach the social services now, to get Mum 'into the system'. It will become increasingly important that you have support you can trust.

    Regards
    Chesca
     
  15. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Though the Consultant told her the diagnosis at the time, and I then went over it with her, Mum doesn't seem to remember it. She just talks of her failing memory problems, so we don't remind her of the diagnosis as there doesn't seem to be any point in that.

    The Nurse got back to us today and we have arranged for her to come to see us next week. She has mentioned putting us in touch with Social Services too.

    Thanks to everyone who have read/commented upon my mailings. I know where to come now.

    Can anyone recommend any books to me on the subject?
     
  16. Kay

    Kay Registered User

    Nov 15, 2004
    7
    Co Durham
    Hi Lulu

    Yes I have a book at home but can't remember (!!yes I know what you're all thinking!!!) the exact title or author - I'll try and bring it to work tomorrow and post the details then - I found it useful to read not knowing much about AD or how the brain works - it gave me a guide to whats happening to my Mum!!
     
  17. Sheila

    Sheila Registered User

    Oct 23, 2003
    2,259
    West Sussex
    Hi Lulu, one I found very good is "The thirty six hour day", offhand I can't remember the author, but if you go to Amazon it may be listed, otherwise I will try to find out for you. Also, many of us have found "The selfish pig's guide to caring" a bit of light relief with a bite of truth in it. Love She. XX
     
  18. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Thanks to all who have added their bits. I now have so much to look into, so many new avenues to explore, and feel so grateful.

    I have another question. Mum has been complaining of a 'head cold'. Sometimes we wonder if she uses this as an excuse to get her out of social contact, but there don't appear to be any visible cold syptoms. This cold has been with her some months now, on and off. I wonder, could it possibly be the Aricept, as I see on the enclosed info sheet that common cold has been reported as a side effect? It's something I shall mention next week to the DN, but thought it was worth asking here.
     
  19. Kay

    Kay Registered User

    Nov 15, 2004
    7
    Co Durham
    Hi Lulu

    I promised to let you know - the book that I have read (although you've probably got enough reading material to keep you going for a long time!!) is the only one I could find in the shops (and being impatient didn't want to wait to order one!!) is the Daily Telegraph Alzheimers Disease by Dr William Molloy and Dr Paul Caldwell ISBN No 1-84119-474-3. I found it useful.

    My Mum is on Aricept too but as she has only been on it for a very short length of time so I can't comment about side effects yet.

    Sorry I couldn't give more insight!!

    Cheers

    Kay
     
  20. Lulu

    Lulu Registered User

    Nov 28, 2004
    391
    Hello Kay
    Thank you for the book -I shall seek it out. I smiled to myself as you weren't able to remember the name of the book! I find I am becoming more and more forgetful and often stop to wonder who exactly IS normal around here! Sometimes even Mum reminds me of things I've forgetten, which is worrying! I put it down to stress ......
     

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