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Welcome to Talking Point - introduce yourself here

Discussion in 'Welcome and how to use Dementia Talking Point' started by Mark_W, Jan 17, 2018.

  1. Smudge13

    Smudge13 New member

    Feb 8, 2018
    8
    Hi just joined , my mum was diagnosed with mixed dementia a year ago , she also has dysarthria so her speech can get difficult to understand when she is tired or in a stressful situation . We have tried donepizil but Mum kept feinting , we are now on day six of rivasigmine patches so far so good !! It is just so hard at the moment to watch her decline so quickly , I decided to bite the bullet and join others who are in the same boat .
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,720
    Female
    Dundee
    Hi @Smudge13 and welcome to the forum.

    I’m sure you’ll get lots of help and Support here. Now that you’ve introduced yourself you might like to start your own discussion thread - perhaps to ask a question or to share your experience. Just go to the I Care got A Person With Dementia area -

    https://forum.alzheimers.org.uk/forums/i-care-for-a-person-with-dementia.70/

    You can then click on the grey '+post new thread' button to start a new discussion.
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,009
    N Ireland
    Hello @Smudge13, welcome to TP. You will find this a friendly, informative and supportive place.
    Medication can take a while to have an effect but hopefully you will see a slowing of the decline.
    When it comes to understanding speech try to use body language and knowledge of your mum to help you guess what she wants. My wife has the same issue and recently asked if she could use the ‘meruda’ - I knew from her body position that she wanted to use the computer! It may sound like nonsense but it’s just that the words come out wrong.
     
  4. Smudge13

    Smudge13 New member

    Feb 8, 2018
    8
    Hi , yeah I don’t really have too much bother understanding her but find in shops people often look past her with panic stricken eyes at me , when I repeat what Mum has said instead of replying to her I find they blank her and answer me , Her speech therapist gave her a card to hand people saying she had dysarthria and for them to be patient with her , but they kept asking her to explain what dysarthria was !! Hence those cards went straight in the bin , do you find the same thing happens with you ?
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,009
    N Ireland
    I don't think my wife is too bad yet, however, I do indeed get that sort of thing - people look to me for answers when talking about her. It's sad as it must make the person feel that they are thought of as stupid when they aren't and that won't help with their confidence or self esteem. I often ignore the fact that people are looking at me and I just look at my wife and wait for her to speak; only helping if I really need to. I'm lucky in that my wife has always tended to let me deal with things anyway as I'm the assertive type and she isn't so it hasn't caused any real issues with her yet.
    The condition is getting worse with my wife so issues may arise in the future but I won't worry about that until it happens. 'Live in the moment', is my motto! Good luck to you and your Mum.
     
  6. Katie Black

    Katie Black New member

    Feb 8, 2018
    1
    Female
    London
    Hi ,I am caring for my dad who has been diagnosed with altz about 6 months ago,although we have known something was wrong for about 2 years ag.
    My mum is his primary carer but I do what I can with my sister.I work part time so I am able to get him up in the mornings,get him dressed ,washed and down for breakfast.I have 2 teenagers and a football loving hubby.So all in all, a busy life.

    Yesterday,was the first time ,I actually cried .We had a glimpse of the old dad on Saturday,the smiling ,joking talking father that we knew and loved.He had been ill with a chest infection,so he had steroids and antibiotics.This made him euphoric the next day and he would not stop speaking ,winking ,initiating conversation . we had him back for one day.Then gradually it has worn off and he is back to his quiet self again.This is a cruel disease that plays with your emotions...

    I know we have good and bad days to come me ,but I will treasure that Saturday forever......
     
  7. DeMartin

    DeMartin Registered User

    Jul 4, 2017
    711
    Kent
    Hi Katie, I treasure a day eating ice cream with my dad, sunny day at the beach, that what I see when I visit him.
    Anyway really answer to bump your post up and welcome you to TP, have a good browse, ask any questions, someone somewhere will have an answer.
     
  8. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,004
    Male
    Bristol
    Welcome to TP from me too @Katie Black. Holding on to these memories and to the good days is hard, but it's getting me through some hard weeks.
    Sitting in the sunshine in Clevedon while C tells me she doesn't really like Clevedon but she likes the ice cream and the trip to Sidmouth listening to the folk singer in the garden café. I'm sure there was ice cream that day as well. :D
     
  9. chris1123

    chris1123 Registered User

    Feb 3, 2018
    13
    Greetings, Earthings. I joined because I've got this idea which I think might help people with Akzheimers. I emailed the Alz Soc to say I was going to write a blogpost about it, and Id like to know what they thought. They made encouraging noises (I'd like to think) and suggested putting it to the community. But you can't start a topic until you've posted ten times. I hope my ten opinions on people's problems won't upset anyone. I haven't got it and I don't have any relatives with it.
     
  10. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,437
    I'm not sure why you think you can't post a new thread until you have 10 posts. You can. Please bear in mind though that this forum is for the support of people with dementia and their carers. Also, look closely at our forum rules to determine if your post is appropriate. If what you are actually attempting to do is post a link which does require 10 posts, you can pm me or one of the other moderators and we will take a look and see if it's acceptable. Please do not post simply to get round our rules.
     
  11. MdeejW

    MdeejW New member

    Feb 8, 2018
    2
    I still really struggle with the simple things and i end up being really snappy... thing is, she not even bad yet and I'm scared witless for when it really kicks in
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,004
    Male
    Bristol
    It's scary alright MdeejW, sorry to say it has not got a great deal less scary as time has gone on. Does your mother have a care package in place, just having someone else to come in and do a wee it of personal care takes the strain off. Has she had a care needs assessment and have you had a carers assessment? t may be worth contacting social services to see about a day centre or some kind of sitting service. I know it's fairly early days, but I left it a bit late to sort some of these and it may be better to ask social services what they can do.
     
  13. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,009
    N Ireland
    We learn as we go along and in time I have found that even though my wife is slowly deteriorating my reactions have changed for the better. You may well find this too so don’t be so scared of something that may not happen. Have you seen the thread on ‘Compassionate communication’ in the ‘health and wellbeing’ sub forum? If not, it’s well worth a read. It is a lesson in perfection that may never be achieved but it’s well worth trying to put it into action.
     
  14. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,720
    Female
    Dundee
  15. chris1123

    chris1123 Registered User

    Feb 3, 2018
    13
    I emaile the Alzheimers Society to say "
    I'm writing a blogpost about the possibility of helping people with Alzheimers to accept their loss through a guided Buddhist meditation. As a break from desperately clinging onto the wreckage of their mind, they'd be encouraged to let go and float in the ocean of bliss. That kind of thing. The session would be about 30 minutes. I've been told that those with Alzheimers wouldn't be able to concentrate. But they wouldn't have to. They'd be following the guidance. What do you think?". Customer care advisor Jamie Tulloch said "what I would recommend would be to reach out on our online community Talking point. You could try ask our supporters what they think, and get the view directly from their perspective." I said "...apparently I have to post 10 times before I can start a conversation. Is this right?". Jamie said "That is indeed correct. The reason we do this to make sure the community isn’t filled up with spam. But please stick with it, I think this could be a really interesting idea."
     
  16. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,437
    Ah I think what happened there is a confusion relating to the term "conversation". That's what we call a one on one private discussion where you do need 10 posts. You can however start a new thread at any time. I would suggest the health and well-being forum here https://forum.alzheimers.org.uk/forums/health-and-wellbeing.75/
     
  17. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,004
    Male
    Bristol
    https://forum.alzheimers.org.uk/help/guidelines/#alternative
    Members of Talking Point are welcome to talk about their experiences with complementary and alternative therapies on Talking Point but please don’t make claims about their effectiveness or advocate for their use.

    Also please don’t:

    • Claim that complementary and alternative therapies can cure dementia, control associated symptoms or reduce the risk of developing it
    • Tell anyone to ignore a medical expert’s advice.
    • Encourage anyone to attend practitioners of alternative or complementary therapies instead of a medical expert.
    • Advertise any alternative or complementary therapies for commercial gain.
    Sorry Jennifer if this is wrong or stepping on toes.
     
  18. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,437
    No that's fine.
     
  19. chris1123

    chris1123 Registered User

    Feb 3, 2018
    13
    Fair point. As it happens, I wouldn't do any of those things, but I understand your caution.
     
  20. chris1123

    chris1123 Registered User

    Feb 3, 2018
    13
    Thanks for explaining that, Jennifer. Much apprecciated. I'll do as you suggest!
     
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