Another difficult day with Mum

Discussion in 'ARCHIVE FORUM: Support discussions' started by honeyc, Mar 22, 2008.

  1. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    My Mum still refuses to accept that anything is wrong with her. Despite being told by her GP that they think she is showing early signs of Lewy Body dementia, she continues to refuse to accept that anything is wrong with her. She is more concerned with what everyone will thing about her being "labelled" with dementia than the possible improvements that could be made to her life by accepting the diagnosis and working with it.

    I am finding this increasingly difficult to deal with as some days, she phones me 5-6 times a day, despite knowing that my children are at school and I am at work. The messages get more and more irate at me not being there to talk to her. When I ring her back, she point blank denies ringing me so many times and says that she will not do it again, until the next time.

    It is very hard on my children. I have three girls, aged 11, 10 and 5 and the older girls are certainly very aware of the situation wiht "Nanna". They have been very understanding about us all spending lots of time at her house and them basically being ignored while my husband and I clean the house because you wouldn't want to eat or drink out of anything in the house before we had cleaned it!!!

    I am due to go with my Mum to her GP for a three month review with the GP and the Consultant Physchiatrist soon and am struggling with how to deal with this meeting. Do I explain the situation as I see it and risk once again upsetting my Mum or do I allow her to keep up the pretence that all is well with her life when it is anything but?????

    Do you force someone to admit that they are not well or do you pretend that all is well just not to upset them??
     
  2. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Lewy body ?

    My hubby has been told he has Lewy bodies.
    Has your Mum also got Parkinson's ?
    Barb X
     
  3. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Honey, what a difficult situation to be in.

    You cannot go on as things are. You have to explain, either by letter, phone call, or email, to both mum's GP and Consultant Physchiatrist, and explain the situation.

    They will be/should be used to this, as it often happens with cases of dementia, but with a young family such as yours, you have to put them in the frame as well as your mum.

    You are not going behind her back, just being realistic.

    Remember, people cannot help if they are not in possession of all the facts. Please let us know how things pan out.
     
  4. rose_of_york

    rose_of_york Registered User

    Mar 22, 2008
    94
    York
    When I accompanied my mother on her last visit to the Consultant Psychiatrist she got really angry when the doctor looked at me asking for answers as to how she had been. It was impossible to tell the truth, and of course you can never get to speak to the doctor without the patient being there.
    Barbara
     
  5. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    At the moment I have only been told that they think that my Mum is showing early signs of Lewy Body dementia. From what I understand on reading up on this, it is a mixture of dementia and Parkinsons. My Mum has times, particularly if she feels stressed or overly worried, when she will have hand tremors but that is all I have seen at the moment.

    The biggest problem is her memory loss. She does things and then cannot remember doing them. This is leading her to ring me endless numbers of times without knowing she has done so!!!

    She completely forgets whole conversations that we have had and then wonders how I know about things!!

    My biggest problem is that she is adamanat that she does not want to take any medication for this at all. She does not think that her situation has got bad enough. When I have tried to talk to her about it, her answer is that when she gets worse, then she will do something about it. I try in vain to make her realise that by the time things get worse, she may well be incapable of doing anything about anything!!!

    As you can probably imagine, this kind of conversation does not go down very well with her!! What do I do???
     
  6. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Barbara, you state:
    You can, of course tell the doctor all the facts before hand, but any doctor/consultant worth his salt will acceeed to your request for a few words in private. You may have to be firm, but believe me, it can be done.

    Honey: as I said before, unless you let people know what your problem is, how can they help you.?

    Ladies, I do now how hard it is to speak up for someone else, when their whole being is against it.

    Believe me, as hard as it is to speak out against your dear mum or dad, just imagine how difficult the situation is when it is a husband/wife/partner.

    Never easy. I know.
     
  7. honeyc

    honeyc Registered User

    Jan 29, 2008
    17
    Connie

    I think that you are very right in what you say. I have to accept that it is for her own good that I say how I feel the situation is. Allowing my Mum to pretend that everything is OK is definitely taking the easy option but achieves nothing in the long term.

    I have no doubt that things will get a lot worse and I think that this won't take very long to happen as I have already seen a marked deterioration in my Mum.

    Allowing her to maintain the pretence is detremental to her own well being. I have to take your advice and at the 3 month review which will take place in a few weeks time, I must try to put forward my opinion as to my Mum's true condition and how I feel she is coping/or not with her day to day life.

    I know whole heartedly that my Mother will accuse me of betraying her and may well refuse to talk to me for a while. However, If I am honest with myself, this will only be the calm before the storm. The reality of the situation is I am the one that she turns to when she has a problem, feels down, lonely and depressed. She cannot alienate me for ever because she would have no one to talk to.

    My Mum keeps telling me that her friends tell her that everything is fine with her and she has nothing to worry about. But in the next breath, she goes on to tell me that when she invites friends round for dinner, they "offer" to bring the dinner, because they say "you have a lot on you mind at the moment".

    When it is people you really love, you cannot say the nice polite thing, choose not to hurt their feelings and go home with a clear conscience. Someone has to be the one to say what they know in their hearts is true but do not want to accept as it frightens them and they do not want to accept the inevitable.

    I think it is as big a battle for the family and carers of dementia sufferers to come to terms with this illness. It must be incredibly hard for it be happening to your partner as there is very little respite from the situation.

    I find that I get great strength from the posts that everyone leaves on this site. I try to make time to come back to it every few weeks and it reassures me that I must stick to doing what I feel is the right thing to do for my Mum. This is not necessarily what she wants me to do, but that is something I will just have to live with.
     
  8. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Neither and both! (In different measures at different times!!!)

    I can only reiterate Connie's advice ..... and I know many others here - write down what you know the GP or consultant needs to know (in confidence) prior to any consulation ..... I can understand the need not to hurt feelings even if you believe they will 'forget' soon after - but it's a worse betrayal not to give the professionals the 'truth' as you see it .....???

    Tough love, as they say.....

    Some time since Lewy Bodies was mentioned for my mum .... I know the fluctuations between lucidity and incapability ... understanding and denial (on both our parts) are very difficult .......

    Love, Karen, x
     
  9. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    #9 Cate, Mar 23, 2008
    Last edited: Mar 23, 2008
    Hi Honey

    I can relate to most of what you have described, and agree with the advice already given regarding a letter to the Consultant prior to mum's appointment. I am certain the Consultant will appreciate as much information as you can give.

    My mum has never had any insight into her condition, and has never been compliant with medication (well, if there is nothing wrong with you, why would you take medication!!).:rolleyes:

    Over the years I have come to realise in my mums case, there is no value at all in her knowing, whats the point. Its hard enough for her to cope with her loss of memory, and what ever I tell her, is forgotten within minutes, so I feel that if I had told her over and over again that she has AD, it would be as upsetting as the first time.

    Coming to accept that this is happening to your loved one is a hard road to walk, but given time you will get there, and learn to cope, but it is an emotional roller coaster. Just when you think you have over come one problem, up pops another.

    I agree the phone calls are the hardest to cope with, prior to mum moving to the NH, in the last quarter she had telephoned me over 480 times around the clock, and each time, she had forgotten that she had called me 5 minutes before hand, and the fact that it was 3:00am meant nothing at all.:rolleyes:

    At this stage I would try not to worry too much about the state of mum's house, she is probably wondering why you are doing her job, which may just add to her confusion. You will get very cute with taking away the out of date stuff, and replacing it with new, in my opinion, best to say nothing.

    We all of us want things to stay the same, mum's house to be as tidy and clean as it always was, mum to look as smart with hair done etc etc. as before, sadly these things do slip sometimes, and in my opinion try to ignore it and keep mum as happy and as less confused as possible.

    You know your mum best, and given time for you to accept whats happening, you will be in the best position to help mum the most with coping.

    Love
    Cate
     
  10. hendy

    hendy Registered User

    Feb 20, 2008
    506
    West Yorkshire
    Hi HoneyC
    How can you force somebody to admit they've got dementia? As difficult, annoying and heartbreaking it is for you, if you make things confrontational, might it cause more problems? Reading the advice given on your earlier thread(there were excellent suggestions about accepting help etc), you just have to be extra ingenious at dealing with issues. This is so hard I know. When you have a young family(as I have), you just hope and pray that the 'easiest route' can be taken by all concerned. Unfortunately, things never just go according to plan and at the end of the day you just have to accept things the way they are( this is easier said than done) it has taken me five years to completely accept Dads dementia! When dealing with Dad in the early stages of the disease, I too used to get frustratd that he would insist he was ok and managing very well, when he clearly wasn't. In fact, it was my husband who put me straight on that one when he said 'How would you feel if some b-gger told you you were going demented? You wouldn't accept it either, and you'd fight it every step of the way? ' Rather blunt, but it did get the message across!
    Honey, try if you can to get some practical knowledge of the disease, so that you can try to get a more long term overview of how its likely to affect your mother in the future. Its difficult and traumatic to face up to this blessed disease, but for warned can be for armed. It might help put things in perspective for you now.
    It is such a traumatic time for you, I completely understand your distress.
    take care
    hendy
     
  11. linda a

    linda a Registered User

    Jun 13, 2006
    48
    suffolk
    Hi

    My husband has lewy bodies and parkinsons ok in the day well most days sleeps a lot its the evenings and mornings he was dignosed just over 2 years ago
     
  12. LinzyE

    LinzyE Registered User

    Mar 13, 2008
    12
    My Grandma was diagnosed just under two weeks ago.

    Unfortunately she has shown a very rapid decline, she is refusing to eat unless its ice cream or anything sweet really and only drinks when prompted even then it is only sips. She has also become increasingly aggressive and very paranoid. with increasing falling episodes.

    She is being diacharged from hospital in the next two weeks and is going home (although she's wanting to go to the house she lived in as a young girl)... my grandfather is goin to need all the help he can get. She is getting assessments done while in hospital. We fear that she will only he at home for a few days, weeks at most, due to the rapid decline in her mental and physical health.

    My Grandfather has finally accepted the help on offer but at first was very reluctant, its was only since she has been in hsopital he has opened up to the family.

    Sorry about the long post and it propably doesnt help with your initial post.

    Linzy x
     

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