1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    The day centre closed for 2 weeks over Christmas, mum is so difficult to get any carers in that we had 3 days over Christmas that the one regular carer we can get in the door had off so had to handle it on our own.

    Inspite of being so run down that I have had recurrent chest and ear infections and now a nice bout of sinisitus to top it all off I dragged myself to the shops with mum repeatedly so that she could buy presents and buy items of food. I was glad that she had enough memory of Christmas's past to want to do it. But the ungratitude and the constant nit picking and griping and complaining about what I haven't done had me ready to scream before Christmas eve.

    Icing the Christmas cake all she wants to do is complain that someone bought her a colouring book and her carer bough her flowers ( colouring was her big passion until a month ago now it is a wierd thing that she would never do)

    We've had mum round every day over the Christmas period, stealing the mornings for ourselves and the children who have lost out on so much attention. Then today she rings and wants to come round earlier, we try to delay her but confused conversation means we cave in. We are playing a game with the two littlest kids when she arrives and then sits staring daggers because we continue to play, not inviting her to join in becuase she just wouldn't be able to and not stopping to give her undivided attention.

    Once the game ends my husband takes my little girl out on her bike so that I can yet again give my mother more attention. Is spend all afternoon trying to help her to a simple weaving craft. Finally it is time that I can escape and cook dinner so mum follows me and wants to help - any refusal of help is always met with her getting annoyed so I let her mess up my dinner ( cooking is one of the few pleasures left when I can do it alone)

    Then I have to break the news that I am taking the children iceskating tomorrow and her carer will be back in with another lady who she knows coming to warm up her dinner ( that I am cooking) I've learnt not to tell her these things much in advance as she will wreck a whole day, but I've spent all day feeling stressed about the confrontation that is coming - if she knew we were really going to the winter wonderland at Hyde Park there would be further hell to pay - she told the nurse recently that I should never go out without her and that she shouldn't have to have carers as I should do it all ( with 5 kids and a full time job)

    SHe stormed out, husband and I took todays dinner and all tomorrows meals down later and she had another go, we've been fielding I'm sorry phonecalls that end with her having a go at me for the past couple of hours.

    All this to be able to spend a guilt ridden day with my children.

    And the punishment won't stop there it will go on for days after.

    She asked tonight why I took on looking after her, I explained that she was my mother and there was no one else and she pointed out that there were lots of people who could be my mother. She has this obsessive attachment to me but has no idea that I am her daughter. I can kind of handle not being her daughter, i just wish that her attachment to me would lesson with that knowledge.

    Rant over - apologies I know I'm not the only one who will have had a tough Christmas!
     
  2. Marcelle123

    Marcelle123 Registered User

    Nov 9, 2015
    4,401
    Yorkshire
    It is not a rant. You are just letting off steam after doing your best in a very frustrating situation. And by posting, you are helping others who come on to the site to know more about what dementia is like. I am one of these - my mother is in the relatively early stages & lives nearby, independently, but still I get upset at all the obsessions, the argy-bargy, the mistaken beliefs etc. I have learned since joining this forum that I am relatively lucky, but I have also learned more about behaviours that are just beginning to seed in my mother's psyche.

    Thank you for posting and sharing.
    I hope you have a lovely day out, and can be completely distracted from worry.
     
  3. saskia

    saskia Registered User

    Aug 10, 2015
    124
    North Essex
    Oh what an awful horrid time you are having. I can't even begin to imagine half of your life,mine is bad enough with just my mum & we have no kids ,yet the guilt is constant. Both me & hubby work full time, spend every moment we can with mum,but its never enough.
    Every time I leave her in her home, she gets tearful & asks when I will be back, we walk her dog every morning otherwise she forgets, today I spent the morning with her & called her tonight, & she has forgotten I was there, heartbreaking.

    You should not ever feel guilty for spending time with your children, you won't get this time back again. But easy for me to say as sitting here with another splitting headache stressing that I don't spend enough time with her.

    Thinking of you so much to tonight xxx
     
  4. Slugsta

    Slugsta Registered User

    Bless you! It sounds as if you never get a moment to yourself and struggle to get enough time with your children :( As has been said, your children are important and you will never get this time back so please try to send the Guilt Monster away with a flea in it's ear (or a bloody nose, I don't mind which :D ). I do hope you are able to relax and enjoy your day tomorrow, you certainly deserve it!
     
  5. Louby65

    Louby65 Registered User

    Mar 26, 2014
    619
    Scotland
    Have a wonderful time at winter wonderland Livveywills- put yourself and your children first . You have nothing to be guilty of and so much to be grateful for . Your children , I'm sure , will love spending precious time with you making the most wonderful memories , while you enjoy being mum. Enjoy ! Best wishes , Lou
     
  6. MrsTerryN

    MrsTerryN Registered User

    Dec 17, 2012
    769
    Have a great time at winter wonderland we were there before xmas. There are lots of great rides for little ones.
    I know I will be in huge trouble when I visit mum after being on holidays but ,like you, i have other people in my family as well as mum
     
  7. Lancashirelady

    Lancashirelady Registered User

    Oct 7, 2014
    110
    You really have to put your own family first. Try to stop feeling so guilty (pot calling kettle black here!) and do what is best for you and your kids. Whatever you do for her your Mum probably won't remember tomorrow so there is no point tying yourself in knots. This disease can make people so horribly manipulative and demanding - we have to try to get a balance and give them as many good moments as we can - but in my opinion not at the expense of our children
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,731
    My mum did this all the time too - I looked after her and had two young teenagers - we all had to muck in lol. We avoided telling her about anything that she wasn't invited to in the end because she gave us so much hell. I soooooooooooooo sympathise and the day centre closure was the worst time of year.

    I have to be honest that in the end I learned to let most of it go over my head - still stressful but not so much as the early days and funnily enough it was my 14 year old who taught me how to do it! I used to take 3 deep breaths, tell myself 5 times that it wasn't mum, it was the dementia talking and then take another 3 deep breaths before launching into my distraction programme which usually didn't work but I always lived in hope

    Thinking of you x
     
  9. Livveywills

    Livveywills Registered User

    Jul 11, 2015
    57
    Thank you

    Thank you so much for your comments, I read them on the train down to London, made me cry a little!

    We had a wonderful day, even when the lunchtime carer rang to say mum was refusing to let her in the door and demanding that we appear. We resisted temptation to call her and start negotiating figuring we had left lots of food if eaten cold it wouldn't harm her, we knew she was alive as was yelling at the carer through the door.

    It was just so good to spend time where I could give the kids my attention and not worry about the noise or have to keep watching for Mum's next need.

    It has given me the boot up the bum I needed to look seriously at regular respite care, going to visit a recomended home next week - mum might hate the idea but it may just save our family, and I think like going to the day centre if it is regular she will at least become used to it.
     
  10. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    I'm so glad you had fun at Winter Wonderland and good for you for holding firm and not going back. You and your family deserve the time together and the break, and your kids absolutely deserve your attention.

    I think looking into regular respite is a great idea and urge you to do it!
     
  11. RedLou

    RedLou Registered User

    Jul 30, 2014
    1,162
    I second Amy. Well done on your day and on seeing a way to ensure dementia does not take over your family's life. You are a wife and mother now - being a daughter is a lesser role and dementia does not change that, however much it screams through doors and stamps its foot. *hug*
     
  12. Ellaroo

    Ellaroo Registered User

    Nov 16, 2015
    161
    Liverpool
    My mum who is nearly 90 has had dementia diagnosis for over 6 years but not been right for 10. She came to live with me when my sister started systematically financially abusing her. She lived with mum and had access to,pln number. When it was being investigated mum came to livevwith me , 6 years ago.
    I am widowed now and have a teenage daughter and couldnt have managed without her, especially making me laugh at things.
    I have given my mum different names when she is affected by dementia.
    Keith lemon, no boundaries and quite saucy, filthy even. Miriah keery the diva, basil faulty and im mannuel, totally submissive . A troll when the really nasty comments are coming thick and fast. Brat doll when nothing suits . Amazingly can still be herself , appreciating what a do for her . Recent one Lady C , awkward and abnoxious .

    Have been having respite for 3 yrs now , wish id done it sooner.
    Social services kept saying mum has to agree to it, problem was mum still doesnt agree there is anything wrong with her and believe she never will.
    I said mum had agreed tomit and sw paid us a visit.
    I instinctively knew not to tell mum and was economical with truth, going to visit pensioners cafe, guest house ...
    Mum did realise after wed been there 15 mins and shouted out is this what I think it is
    I thought ok , tried but it didnt work. Nurse spoke to me privately and said look at mum. Who was laughing and joking with a male resident. Nurse said mum had died of it and to leave unannounced . I questioned it and she said if mum stressed , would be phoned immediately.
    Mum was fine and since then thats how i do respite. Mum is always pleased to see me and doesnt mention my disappearing act.
    Mum is more tired and more mellow. She can still go into character but not for long.
    Respite has kept me going , say to self in 7 wks time i wont be an arsehole and thick as pig****. It does help me cope and have something to look forward to.
    Good luck xxxxx
     
  13. Pear trees

    Pear trees Registered User

    Jan 25, 2015
    441
    I'm glad you had a good time at Winter Wonderland with your family. You need to do this more often even if it does upset your mum. Your own children must come first.
    My own mum has always resented any time I spend with my daughter and her 2 girls, and has told me I should spend all my free time with her. BUT she slams the door on us when we try to visit, ignores us when we do get in, and does not appreciate anything we do for her, including taking her out to hairedressers/coffee/drive etc. She never gave me any support, practical or emotional, when growing up and was selfish difficult and distant, and very difficult to please.
    I still visit weekly and call her every other day but check with carers and SIL daily that she is ok.
     

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