sundowning and mum at wits end - me drowning in guilt.

Discussion in 'Middle - later stages of dementia' started by lesley1958, Mar 29, 2015.

  1. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Hi
    I posted recently about obessional worries and have leant a lot about sundowning very quickly.....

    Mum having an awful time with Dad in afternoon/evening and the trigger is always - are my mum and dad alive/dead? I have suggested to Mum afer consulting this forum that she stalls and says they are and they will maybe see them when the weather is better but she says she can't tell him a direct lie and what if he remembers and knows she has been lieing to him? Yesterday was horrible. The dementia nurse came on Friday and is going to see about changing his medication but I don't know how we will get through the next few days.

    I live 50 minutes drive away and was working full time but was signed off due to stress etc on Thursday. I went over to see them Friday and Saturday - I usually stay about 3-4 hours or so. I am drowning in guilt because I feel I should stay there with then overnight (I am single, no children) but I cannot bear it. But increasingly I cannot bear my thoughts back in my own home, hardly any sleep last night. I am breaking up and how can I help my mum if I do that? And what do I have to bear compared to what she is bearing? I feel that I am such a coward.

    I was on this forum for hours last night and it helped so much to feel a part of all your struggles. I just had to talk to someone this morning.

    Lesley x
     
  2. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Hi Lesley you are no coward. You have been brave to share your thoughts and concerns on this forum. You have come to the right place very soon lots of people, better informed than I am, will make helpful suggestions that can only ease your concerns. I admit I go with the 'love lies' approach. If my wife talks about close family members who have dies and is not sure if they are still with us, I do not immediately challenge her thinking. I try to talk about the person and remember the good times. So we reminisce and eventually the 'penny drops' or we move onto another subject. Just one of the many things I have learned from supportive folk on T P. I am sure you will get lots of posts soon that will help you on your journey with dementia.
     
  3. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol

    Thank you so much for this reassurance. It has made me cry but that's tears of thamkfulness for your kindness. I will suggest this approach to my Mum. I have to get a hold of myself for her sake.

    Lesley xx
     
  4. Silverstar1

    Silverstar1 Registered User

    Apr 21, 2014
    1
    Hi Lesley
    Thank you for your honesty. I've not posted here before but often look in for words of wisdom and experience which help me enormously with my own situation.
    I identify with your sorrow and sense of helplessness. I think many of us know that dreadful tug of war between guilt on one side and grief on the other. It feels like there is no rest and yet, somehow I've had to find a way of protecting myself so I can be with mum without constantly drowning in both feelings. I hope you can find that little Island of protection too. My mum asks me if her mum is alive usually when she's sundowning and usually when we've been out for a couples of hours. I lie. I've learnt that trying to keep her in my world causes her sadness so I go into her world instead and try to swim with her tide.
    Be gentle on yourself.
     
  5. Tin

    Tin Registered User

    May 18, 2014
    4,829
    UK
    If the concept of love lies is something your mother does not want to do then maybe saying nothing would be best, hard I know or just saying tomorrow, we'll talk about it then. My mum's sundowning is not as frequent these days but when it was, the only distraction that worked was a walk or drive in the car. I would take her out to a café and it seemed that she was able to 'pause' the sundowning when other people were around and by the time we got home most anxiety had gone, repetitive questions still there though, but I don't box repetitive behaviour with sundowning.

    None of this is easy and you are worrying about both your parents, guilt is such a strong emotion.
     
  6. AitchM

    AitchM Registered User

    Mar 29, 2015
    13
    Female
    Yorkshire
    Dear Lesley,

    I can really empathise with your feelings of guilt as I am in a similar situation to yourself, although I do have a husband and children- I live a similar distance away from my parents who both have varying degrees of dementia, am an only child and have had to reduce my days at work due to constant anxiety over what is happening to them. I have spent night after night laid awake as you describe.

    I feel exactly the same as you about staying overnight- I have done several times -but feel a desperate need to escape back to normality after a few hours. This makes me feel like a terrible daughter, but on the other hand I cannot care for them when I feel like that inside. So I drive there on my days off and re-energise at home ready for the next visit.
    Selfish though it will sound, I need to distance myself at times to keep myself sane.
    Please don't feel you are alone with these feelings
    I apologise to all of you caring full time with no choice- you have my utmost respect.
     
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    3,699
    Hi lesley,

    We had a similar dilemma, regarding love lies, with Mil. She went through a long phase of asking constantly where her late husband was (even to the extent she phoned the police in the middle of the night several times, reporting that he was missing :( ) . We actually - after thinking about what the kindest option was - had no problem with using 'love lies' - our issue, for a long time, was that Mil could suddenly remember that he had died, nearly 20 years before, and if we had fibbed to her, no matter how well intentioned it was, she could get very angry at us having lied to her. Eventually, we established a response of when she asked, saying very gently to her 'Think about it, Love - what happened to him?' - and this often prompted her to 'remember' herself. We would get a few tears, often, but it was better than the angry reaction, if we had tried to save her upset by using 'love lies'. Somehow, remembering herself was a lot less painful for her than us telling her, no matter how kind we tried to be - no idea why, but that's the way it seemed to work.

    Mil has deteriorated a lot since then, but with questions about both her late husband and (nowadays, more often) her parents, we still find that asking her to 'think' often still works, although we are now using 'love lies' for a lot of other situations.

    I don't know if you could use a similar approach with your Dad, but it might be worth a try, hun x
     
  8. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,535
    North East England
    Hi Lesley. I had exactly the same feelings as you when things were particularly bad for my mam and dad (mam has Alzheimer's).

    I felt that by being there all the time, I could fix things, make them better. The truth is that I couldn't. All I succeeded in doing was to make myself ill, and I came close to a breakdown.

    Please try to look after yourself. i know it feels impossible at the moment, but you will be no good to anyone if you crumble.

    Big hugs and sympathy xxx
     
  9. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    What wonderful, wonderful people are on this forum. I cannot tell you how these replies are comforting me. Just not to feel that I am alone in feeling the need to get away is worth more than I can say.

    I have spoken to Mum this morning and tried to persuade her to find some other ways than confronting him with the truth: reminiscences and yes, lies, anything it takes.

    My love and thanks to all of us out there coping with this vile, vile disease in the best way we know how. Thank you so much
     
  10. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Collegegirl, bless you for this x
     
  11. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    Ann Mac, I'll mention this to Mum, gemtly asking him to think. Love and thanks x
     
  12. liz56

    liz56 Registered User

    Feb 15, 2015
    34
    North Somerset
    Hi Lesley, My Dad's special obsessional interest seems to be who is alive and who is dead. For hours on end ( especially when sun downing) he runs through his family from years ago - his granny, mum, sister etc asking whether they are alive. Eventually he gets to my mum, who died 4 months ago, and is surprised that she has died. He usually says no one told him ! We find 'love lies' lead to him getting cross, distraction is better or gently reminding him to think about why she is not with him.
    Oddly he does not seem to fully understand 'dead' any more e.g he will ask to ring mum. I explain he can't, she is dead, and he says " oh I'll ring her tomorrow then "!
    I find this all very hard, one day I told him firmly " no talk about dead people !" because he was doing it all through dinner . He looked hurt, because it's important to him.......
     
  13. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    That's so interesting and helpful, because "no one told me" is my dad's continual complaint at these times. So maybe the love lies route is not the one for us to take. And yes, like your dad my dad gets hurt when my mum says "I can't talk about this any more." I suggested today to my mum that she asks him at these times what he thinks? - but bless her, she is so worn down by it that I think she cannot find the energy to enter into discussion!

    But I will pass onto my mum that your dad does the "no-one told me" thing because I think it may comfort her. She feels that he is calling her a lier and takes it so much to heart.

    God, I hate this foul disease.
     
  14. liz56

    liz56 Registered User

    Feb 15, 2015
    34
    North Somerset
    Lesley I am just worn out with it too, and I am not looking forward to a 4 day weekend filled with questions about who is dead and who is not !!!! Once upon a time ( last year) I loved bank holiday weekends.
    He has just asked in a very sad voice why I don't like talking about it !
     
  15. lesley1958

    lesley1958 Registered User

    Mar 24, 2015
    107
    Bristol
    I see you are in North Somerset. Liz, and I am in Bristol.....maybe we could meet for a coffee and a "detox" some time!

    You are braver than me. I am not living with my mum and dad so I am not bearing the full burden like you - my mum is.

    Bless you, Liz, and everyone on this forum. Such love and courage I have met with here. You should all, without exception, be so proud of yourselves.

    Lesley x
     
  16. liz56

    liz56 Registered User

    Feb 15, 2015
    34
    North Somerset
    Coffee sounds good - and in the meanwhile let's try and keep sane by posting on here !
    Liz x
     
  17. Rosiegirl

    Rosiegirl Registered User

    Apr 2, 2015
    3
    I dont feel guilty or sad, just annoyed, resentfull and angry.

    Hi everyone.
    You all seem so loving, caring and kind with great love for those you are caring for. I don't feel any of these things for my mom who has had Alzheimer's for about 5 years but diagnosed about two and a half years ago. I work full time and stay at my mom's in the evening during the week and take her home to be with me and my family for the weekend. I go through the motions of caring for her, bathing preparing meals, helping her dress etc. I don't really know what stage she is at. What I do know is that some of her less desirable (to me anyway) traits that she has always had are very much emphasised now and I can't help resenting her when she acts this way now. The traits are probably not even that bad to most of you but I feel I have been controlled by her fo all of my life, I am 58 now, have a husband, three children and grand children. Mom has always kept me tied to her apron strings emotionally I didn't even go on honeymoon because she made me feel bad about leaving her on her own. There is so much more that I guess is irrelevant the main point is I don't feel the way you all seem to. What I do feel is that I am a very unkind, wicked and bad person when it comes to her and that perhaps she would be much better off without me.
     
  18. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    9,765
    Merseyside
    Welcome to TP

    Lots of us feel angry, resentful & bitter at times. We all struggle.

    Has the time come to consider yourself & your family and find a care home for your mum?
     
  19. Rosiegirl

    Rosiegirl Registered User

    Apr 2, 2015
    3
    Thanks for the response.
    Today it probabley is time, tomorrow could be completley different.:confused:
     
  20. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,838
    Suffolk
    Rosiegirl, I would have felt like that if I'd had to look after my father, fortunately a 6hour journey got in the way of that!
    Love lies, yes I use them and it must quite funny if anyone was listening. One thing in which I did tell the truth was when I was asked how his father was. I said he was fine the last time I spoke to him. I didn't add 'in 1984'!
    OH disowns me on occasion, and then asks where's my wife? If I say ta-da, here I am, it is immediately dismissed, you're not my wife.
    If I say your wife had to go out and she asked me to look after you, that's absolutely fine! By bedtime he will then say will my wife be back? And I reply, she'll come to bed at half past ten, he's quite happy with that! And all the time I am an exact replica of his wife! I fail to understand, but it works for me ( and, more importantly, for him).
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.