1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Door Notes!

Discussion in 'I have dementia' started by Jaffy, Aug 2, 2015.

  1. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    I had spent almost 2 solid weeks of dementia around the New Moon and then sometime later I was better for several days straight! Oh Happy Days were back! I did a lot of deep thinking, because some of our 4 adult children are clueless on what to do. They ask questions (I have no answers when I'm "bad off") and so they avoid us. (My opinion.)

    This is what I came up with and taped it to my bedroom door so when you enter you can't easily miss it. I left space where I or they can add more:

    NOT IN RANDOM ORDER:

    Don't ask me if I have taken my meds or vitamins. Bring me water and them (IF) you know for certain that I haven't, or that I need another one, now.

    Distract me with something else. Even if it is just "busy work". This may last well for 10 minutes or 2 hours then come up with some other distraction.

    Have a list made up for distractions that have worked, that you've heard or thought of but haven't tried.

    Take your loved one a drive. (my favorite help)

    Have your loved ones favorite funny movie to watch: over and over and over if necessary.

    Don't ask me any questions! None!

    Let me talk if I want and DO NOT interrupt me while I'm talking even if I am not making sense or have the wrong word or name.

    Let me wander around the house, or certain safe areas.

    Let me cry.

    DO NOT tell me that I "CAN'T" do any of the above. They may not seem to you to help but they DO help me! But if you can distract me into doing something else that is GREAT!

    I may want to be alone: perhaps in my room. Or just alone while everyone is around me!

    As a last result, for me, at this stage is, hold me and assure me that it will end. LIE TO ME!

    This is THE most important thing I discovered when searching my mind: I am "homesick" for ME! I am all too aware in my most worst demented state, that I am not who I was. I may be homesick for my childhood and parents, pets, home. Or for being a Mommy to my babies. Or homesick for who I was in my career. Etc. I wander around; cry; search for ME! And you, my love, may never have even known the ME that I am homesick for, because we had never met then!

    I hope this helps, I think it did my children. Jaffy
     
  2. Deputypink

    Deputypink Registered User

    Aug 4, 2013
    44
    Thank you



    Thanks for sharing - really useful
     
  3. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Wow Jaffy this is one of the most powerful things I have ever read. I am going to P M you.
     
  4. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,041
    Jaffy, I understand totally.

    What you've written should be a reference point as is Compassionate Communication.

    You Jaffy are in there as you understand what you need, but it's so hard to get others too at times.

    Thank you.:)xx
     
  5. Optomistic

    Optomistic Registered User

    Jul 24, 2014
    116
    Manchester
    Hi Jaffy,

    Your words are so very true my husband has Alzheimers and he thinks the same as you about it. It helped me understand a bit more about how it is for him. I hope you have some good days like he does when we go out together.
     
  6. Early Girlie

    Early Girlie Registered User

    Jul 5, 2015
    66
    St Albans
    Thank you, thank you, thank you, Jaffy. This is so helpful and you have voiced what I thought may be true, but my husband can't tell me.

    EG
     
  7. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Thank you all

    I am so thankful. I pray that it will be a help. I noticed this for certain in me in 08 and in 11-2013 it got so unbelieveabley bad and still is at times (too many!) My husband is undxd but in the last couple months he sees that he too "is getting it" We could have told him before 08! We both have Parkinsons plus he has Essential Tremors, I have to admire him for keep going. You're all the greatest. Jaffy
     
  8. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,577
    Kent
    Hello Jaffy

    Thank you for your help in identifying ways and means. It's so wonderful when people can do this.

    My husband was so confused and upset he couldn't articulate how he could be helped. I had to find out by trial and error, error often winning.
     
  9. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Hi Sylvia T P is such a valuable resource when people are prepared to talk so openly about their experiences. Help is only ever a keyboard away.
     
  10. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Other ideas

    I wish carers would mark their calendar (one just for dementia!) Make notes how the person was each day.

    Then check how near, on, and after New Moons AND Full Moons, the behavior changed.

    If that is true (as it is with me) the carer can expect negative changes and prepare ahead of time when the moon is going to change. With me for several years it was 3 days before -The Day- 3 days after. It wouldn't catch them unaware.

    Now after so many years it isn't as reliable but still would even help me. I told my family this years ago and they thought it was the dementia talking! No help, when they could have been prepared and it could have been easier on all of us. Jaffy
     
  11. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,041
    #11 Sue J, Aug 3, 2015
    Last edited: Aug 3, 2015
    Hi Jaffy

    You got me thinking, as I know there is a pattern to my symptoms too.

    I found the following link where you can create your own calendar and adding in the moon phases is an option too. Maybe someone could do it for you and print it out
    I am going to try and do it for myself and my friend too if I can. I have said for a long time now out of every 4 weeks I get one wher I feel I can function a bit more 'normally'

    http://www.timeanddate.com/

    All the best to you, you're an inspiration
    Love

    Sue - I hope the link works OK
     
  12. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Thanks Sue, it worked for me but don't anyone ask me how! lol Thank you.
     
  13. scarol

    scarol Registered User

    Aug 9, 2015
    1
    door notes

    Thank you for your post it made a lot of scene .
    My mother has taken up crawling on the floor at times.
    I have so many questions as to what she is thinking. She has suffered the loss of her animals and the loss of her independence. Her life is changing and she is not coping at all.
     
  14. Jaffy

    Jaffy Registered User

    Oct 24, 2013
    168
    Ohio USA
    Confession: I too crawl on the floor sometimes! 1) I am too tired to walk or too unstable. 2) it is cooler down there or more air flow and I can breathe better. Now you all know! Hope this helps, but maybe there are other reasons! Any more?
     

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