They don't tell you these things...

Discussion in 'I care for a person with dementia' started by drummergirl, Oct 11, 2014.

  1. Kitten71

    Kitten71 Registered User

    Jul 22, 2013
    East Yorkshire
    Thank you so much for posting that link. Whilst I watched it with tears streaming down my face, it was so enlightening to understand how my dad is feeling and why he does what he does.
  2. clareglen

    clareglen Registered User

    Jul 9, 2013
    I love this woman Teepa Snow. I've got addicted to the videos. It has helped me be better with mum, although today I moved her from hospital to a care home. She was ranting in the hospital 'they've spiked the water' 'don't go near them they'll get you too'. I'm going 'OK, right' trying to go with the flow as per videos. Then she says 'you're just pretending' :D I'm obv **** at this :rolleyes:

    Here's another good reassuring one on the difference between forgetfulness & dementia
    And another one on lewy body behaviour is at (start at 16:37 in) I've had this with my mum. It's so good to realise that it's not just her against me but normal for this type of dementia. Teepa's role play is so good & helpful.
  3. submarine

    submarine Registered User

    Apr 5, 2013
    Thank you Drummergirl for writing this. I do hope it gets picked up by the media so that as many people as possible read it. So eloquent and so true.
  4. Insomniac

    Insomniac Registered User

    Apr 29, 2014
    So sad but so true. People who haven't experienced this have NO IDEA what they are talking about. I wouldn't wish dementia and it's fall out on my worst enemy.

    You're doing great drummergirl.

    Sent from my iPhone using Talking Point
  5. Oxy

    Oxy Registered User

    Jul 19, 2014
    #45 Oxy, Oct 14, 2014
    Last edited: Oct 31, 2014
    Isabella, you are so right, this illness takes more than one life! Only problem is that when it's over the 'left overs' will be just that- society's poor unwanted. Whilst caring one lives the life of an old, sick person which ultimately will affect our health adversely and lead to DEM....., vascular at any rate. On benefits and probably unemployed- gov so stupid not to ensure carers get adequate allowance to stop life savings being used up and adequate opportunities for social contact. I will try to get a DNR for myself. I don't want anyone to restart my heart once it's decided to cease beating. Only gives a prognosis of dementia with shoddy care!! They want folk to strive for education but I don't need that now so wish I'd just lived it up instead and on that bright note, I will stop.
  6. Sue J

    Sue J Registered User

    Dec 9, 2009
    I agree Teepa Snow's understanding of dementia and ways to help are brilliant. We need many more of her in this country.
  7. drummergirl

    drummergirl Registered User

    Jul 4, 2012
    Hiya, I'd be more than happy to post it on there - could you send me a link to the group? Thank you x
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    I think you should send it to The Guardian, since that's the paper perhaps most likely to reach SWs and their management, and very likely medics, too. And they would not be so likely as the tabloids to want to turn it into a warts and all 'human interest' piece, with photos and anything you tell them twisted, or at least heavily edited.
  9. Mal2

    Mal2 Registered User

    Oct 14, 2014
    You mentioned carer's allowance.

    We don't have much to laugh about, but, your comment on the canvasser, and carer's allowance, did cause me to have a little chuckle to myself.

    I have seen the politicians on tv this year, saying all the words they think we want to hear, money for looking for a cure by 2025 (too late for anyone of us) but, until last year ( I don't know about anyone else ) I had never heard anyone discussing dementia.

    I was advised by the nurse manager at memory clinic, to apply for attendance allowance for my husband because of his dementia. I did, and she was furious when he was turned down. I gave her all my correspondence and she re-wrote everything for me to re-apply. She said it was ridiculous refusing dementia patients, but, it was all in the way you word the application. It was successful the second time.

    I then received a letter stating as my husband had attendance allowance I could apply for carer's allowance Ha Ha!!!!!!!!!!!!!!!!!!!!! I applied only to be told, as I received state pension of 41.00 a week, I could not have the 38.00 carer's allowance. If it had been the other way around, they would have given me the 3.00 difference. I told them they had better keep it, they obviously are in much more need of the 38.00, than I am. What a laugh!! We as carer's, save them hundreds of pounds per week, by not sending our loved ones into care homes. Whether we have a pension or not, we are still caring for them.

    My husband was diagnosed 10 years ago, I still care for him on my own. He had a sore bottom and front a couple of months ago with urine burn and I had the council district nurse come in once a week to check how it was, but, with the correct meds they gave me I got it cleared up.

    I must say they are the only people that have shown any interest in him. Although everything is ok now, they come once a month just to see how he is, telling me if it wasn't for carer's like myself, they would be overwhelmed with work. Which was very nice to hear, and they are so nice.

    I take one day at a time, and tell myself miracles do happen, if not a cure, maybe better medication. My wish for everyone.

    I have to go now and get the hoist out, before my husband slides off his chair.

    Thank you for the chuckle.
  10. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    I agree so much with everyone else, Drummergirl. Your post should be read far and wide as it really gets to the heart of the difficulties so many carers face every day, and night.

    I can see why the media sometimes over emphasise the 'memory' issue - this is so often where it all starts. But what you have done is to highlight all the other stuff that is so much harder to deal with.

    I agree about the Guardian too - by far the most likely paper to publish it. If they do, this would be great and would raise the profile of TP, where people do tell you what it's like and do share their experiences.
  11. briana

    briana Registered User

    May 23, 2011
    south wales
    said it all

    oh drummergirl,,,,, think you said so much that we as carers do/think every day,,,,, had tears in my eyes as I realized this is my day,,, and im sure most people don't even realize this IS what our day is like but we just get up and do,,,,,,,, without even realizing,,xxbb
  12. gringo

    gringo Registered User

    Feb 1, 2012
    No 'they' don't but people on here do.
    I’ve only been on TP for something over 2 years, but I’ve lost count of the number of posts I’ve read like this. I’ve posted a few myself, in prose and verse. Ok, so this one is very articulate and more circumstantial than most. But, like all the others, it will soon ‘pass and be forgotten like the rest’. As the Arab proverb goes ‘the dogs bark but the caravan rolls on.’
    I don’t think that I’ve ever seen a response to any of these posts from a politician, and I don’t believe we’ll see one any day soon.
    We feel a little better after unloading, I suppose. But that’s it.
    David Cameron tells us how affected he was by seeing Margaret Thatcher’s decline. Brought tears to my eyes! You would have thought that that would have got headlines. But no.
    The sad fact is, until a close family member is affected, and you have to provide ‘hands on care' 24/7, you will have absolutely no idea what it is really like, and how your life will be turned upside down. I fear that I was as ignorant and uncaring as the rest until my wife became a casualty and I was pitchforked into this nightmare world. Until I stumbled on TP. I had no idea what was going on at all, and trying to provide care on my own brought me to my knees.
    In the time I have been here I can’t think of any change that there has been for the better. Only TP makes any sense at all. Only on here can you get the information you desperately need, from people who know what they're talking about.
    Dementia friends? Dementia champions? In all the years I've been caring for my wife, I’ve never met one of these people down where the caring is done.
  13. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Hi Gringo,

    I am a dementia friend and have been one for some time. I spent 7 years down on the coal face of the mine called Alzheimers and a further two years of watching over my husband being cared for in a nursing home. I still make my presence felt every day, they know I am not going away. I try my very best to help others but it will be a long time before dementia friends and champions will make a difference, if they ever will any time soon. Volunteers are great but we will never find a cure or get the right care relying on volunteers.

    The government now saying they are all going to become dementia friends is laughable. How can they help when they have no idea what living with dementia is and how many if it did enter their lives would be hands on? Non of them is the answer because they would plead important jobs and could afford unlimited carers to do the job. It is all lip service.

    You are so right, TP is where we get help, support and friendship,we are an extremely large self help group doing the very best we can to hold each other up and keep smiling.

    One day someone will wake up and ask why have we not done anything about dementia?

    Most of the carers on my husband's floor have or have had a member of their family suffering from dementia and that is why they are excellent caring carers.

    Well I am off to bed now with a good book and hot chocolate, sermon over.

  14. gringo

    gringo Registered User

    Feb 1, 2012
    So now I know of just one dementia friend!

    I still only know of just one dementia friend!
    I was about to say, I think I'll join you! Stopped to think for a change!
    You would be one of the very few people who could preach a sermon I would be prepared to listen to.
  15. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Gringo you are a charmer,

    Jay x
  16. Oxy

    Oxy Registered User

    Jul 19, 2014
    #56 Oxy, Oct 16, 2014
    Last edited: Oct 31, 2014
    Gringo, thank you for writing those posts.
  17. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    rct a carer for my dad who has dementia with lewybodys...youre absolutely spot on...they do say dlb can change from minute to minute and no kidding they got that right!..its impossible to plan really..and staff at social services said well its so changeable theres no service that can run like that!..really? come us carers are managing to do it for our loved ones?... im more annoyed at not what they dont say but what they do say that shows the powers that be are saying sorry we dont know what we can training no money no understanding!..if professionals cant cope with it..why is it ok for us to have to?...ive been on every course I can watched every video read all factsheets..the daily reality is humungously harder..and more emotional..I think we deserve a big pat on the pat for how we saying well done to you..its not a lot of comfort but I think you deserve it!

    Sent from my GT-I9505 using Talking Point mobile app
  18. Isabella

    Isabella Registered User

    Jan 4, 2014
    Someone mentioned to me today how good it is that dementia is in the news so much these days. Yes, the word is mentioned in the news more now. But what this person doesn't and couldn't understand is that the dementia they hear about is a sanitised version that doesn't come close to reality - you don't hear a lot of incontinence stories in the news when they talk about the symptoms, for instance.

    I am all for raising awareness, but they're not telling it like it is, and that's why it isn't getting the support it needs. Because people think it's a bit of memory trouble, and don't realise it is total devastation of everything the person ever knew and did - including things so basic - like going to the toilet or knowing how to open the front door - it is difficult to believe that someone could actually forget them unless you witnessed that devastation first hand.
  19. win

    win Registered User

    Oct 14, 2012
    Thank you Drummergirl I don't thinkIcanactually post you a link but you
    go to Face book and then search for Dementia Awareness group. apply to join the group which they will do and then you can post. Only people who have joined the group can see your post. It does come up on your wall but only you can see it. Are you already familiar with Face Book? Hope you succeed if not let me know please and I will try to copy and post it for you with your permission.
  20. win

    win Registered User

    Oct 14, 2012
    So very true, become a Dementia Friend and help to bring awareness.

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