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. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Do you ever want to EXPLODE but don't because you will be yelled at, etc.? Would I be better to do so or am I better to hold it all in (normal life for me for 69 years). Then I wonder why my family can't tell how bad off I am. I am an actress (when I'm capable, I should win an Oscar, I'm that good!) Or if I can and do act okay, is that good for anyone? Or am I really okay and the dementia doesn't really exist? I am a million times worse than any family member knows. And hubby doesn't want anything to do with it so he leaves me alone daily when Sundowners worsens. His dementia (which is not dx'd and he knows doesn't even exist) is worsening but he has been so flaky for so many years that friends and family just accepts him. Me, they will not accept so I have to be strong and only fall apart when alone (getting less and less possible) which is much of the time and I'm not sure, I can go on any longer. I do tell them, I do give them print-outs, no help at all. Sorry, I just can't go on like this any longer.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Hello Jaffy

    If you can`t get help from your family , try to get help from the professionals. Please see your doctor and tell him/her how difficult life is for you without support.

    Families and friends don`t always understand with dementia how one minute you can be fine and the next minute experience confusion and anxiety.

    Perhaps you would consider phoning the National Dementia Helpline.

    http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

    I`m really sorry you feel so unsupported. Please ask for help.
     
  3. Barry

    Barry Registered User

    Oct 14, 2006
    1,898
    Indonesia
    Hi Jaffy
    Sorry to read of your situation but I know hat you mean about wanting to (Explode) unfortunately for me its now become not a matter of choice as when things don't go right I know just explode and let out all my vent!

    Anyway thinking of you and best wishes
    Barry
     
  4. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    Hi Jaffy,I know exactly how you feel just lately and its awful.In my situation it seems that when my daughter is having a moment and struggling with the ups and downs of my condition,one minute im making perfect sense but ten minutes later im not its ok for her to be frustrated wwith me but not the other way round for me to be frustrated with the dementia.If I voice how I feel she doesn't like it so I try hold it in but all these thoughts upset me,I feel like im trying so hard because I really do understand how much she has to cope with but I don't feel she understands how I feel,I hate having this I long for the times we could be together and laugh and relax in one anothers company,Its as if people think that because my brain doesn't work properly they think the bit that feels vulnerable and scared doesn't exist.Why is it ok for someone to get angry with me just because of the situation its neither of our faults.I feel like standing in the middle of a field and shouting as loud as I can im still me.No wonder we get swallowed up into people who just sit quietly saying nothing.I really do hope you can talk to someone Jaffy sometimes its easier to talk to someone whose not family or maybe so close.BIG HUGS TO YOU
     
  5. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    You have answered what I was going to ask, Thank you. I wondered if there came a time that i would not be able to put on my "act", or not explode. I fear I am getting near to that time.
     
  6. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Thank you so much. yesterday when alone I screamed at the top of my lungs which with Parkinson taking my voice isn't near as loud as I wish it was! And I threw plastic clothes hangers! Only helped at the moment not long term!
     
  7. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,992
    Suffolk
    These things help in the shot term. I have thrown various things in my time, but it's short term release, however, sometimes that's all you want. You then recover and cope for a bit longer.
     
  8. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    Good for you Jaffy,I hope others will post on here what helps them through the tough times,I know it would help to have some ideas to cope.:):)
     
  9. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    My oldest dau called she lives 2 miles away. her dad told her I was worse, then handed me the phone. She said she saw a father of a good friend for 20 years go down hill and die with Parkinson's and dementia and she can't watch me do the same. So I said, I'm just forgotten then! No she said she will remember me!
    I need a in-person person in my life besides my demented husband. No meetings for people like us just for the caretakers (thank God for that, been thru that with Mom) but the "sick" one is not allowed to come. It's for sure no one wants to come here with 2 of us. I don't want to be here and he doesn't either.
     
  10. muriel67

    muriel67 Registered User

    Apr 10, 2014
    44
    That's so sad Jaffy,People don't realise how excluded they make us feel.We all have a need to be cared about and loved and when we are going through tough times it doesn't help to feel abandoned.Last week my daughter just turned to me and said mom you know you will be going in a home don't you,you cant come and live with me,I was shocked she could just come out with it like that as if I was just someone she knew and not her mom.I said I didn't want her to be my carer as she has children to care for.Then I asked that if I was put in a home and I got bruises would she make sure I wasn't being hit.She laughed and said well you wont know.I don't know where the lovely caring daughter I brought up has gone.maybe she frightened for the future when she looks at me.I think we have to help one another on here theres a lot of people walking in our shoes.Have you got any support or any care groups in your area that can pop in and talk with you.
     

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