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registered blind and dementia

Discussion in 'I care for a person with dementia' started by Toddleo, Nov 18, 2015.

  1. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    How do other people cope in caring for someone who has middle stage dementia and VERY limited eye sight? Mum has macular degeneration, which is (according to the hospital eye clinic) "as bad as it can be." She is registered blind and can hardly see anything. Lots of the helpful activities involve looking at pictures/photos/DVD's etc. Apart from music (which fortunately mum adores) and smelling things (limited appeal) I struggle to think of practical enjoyable things to help her. Any thoughts?
     
  2. brambles

    brambles Registered User

    Sep 22, 2014
    229
    Female
    NW England
    Hi Toddleo,

    My mum got a lovely easy to operate digital radio from "wireless for the blind" ( It is on indefinite free loan)

    She gets a lot of pleasure listening to plays and talk shows on it even though she can't always follow them very well.

    She also likes me to read from the local newspaper to her.

    It is very difficult though and she does spend a lot of time doing nothing and she is not particularly fond of music.

    brambles x
     
  3. blueboy

    blueboy Registered User

    Feb 21, 2015
    126
    I have the same problem with my Mum - she too has macular degeneration which is pretty bad as well as dementia. She doesn't even seem to want to listen to music, never watches TV now and, of course, can't see to do much. She just sleeps most of the day and I don't know what activities to try with her any more.
     
  4. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    Thanks both of you for your replies, it is a tough predicament for sure.
     
  5. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    I had this worry with my Mum some years ago. A volunteer from the local association for the visually impaired phoned her every week, she had a regular church visitor but talking books and talking newspapers were her lifeline. When she declined she listened to the same book again and again and again! You may find phoning The Macular Society helpful, Thomas Pocklington Trust and of course RNIB. I appreciate how difficult it must be.
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    a pack of playing cards is sometimes quite useful - sometimes people just like shuffling them around and sorting them, others can play Patience with the large cards. just a thought!
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,713
    Female
    London
    I wonder where you got that from! :D
     
  8. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    Good idea, trouble is that mum can't see well enough for card sorting activities, apart from red and black probably, but I guess that's a start. I did buy some super size A4 cards for her a long while ago, because I thought she might enjoy playing patience with them, but she would not use them cos they were too heavy !! Lol, that's my mum for you ;)
     
  9. CucumberWhisky

    CucumberWhisky Registered User

    Sep 23, 2015
    56
    Surrey
    Hi there Toddleo

    Just wondered if you'd tried Calibre Audio Library. My mum (who also has AMD) has used them for years and they are free (but they do like a donation or two!). They come on either CDs or USBs and very good, with lots of different authors.

    Good luck!

    CW
     
  10. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    412
    Thanks cucumberwhisky, never heard of them - will check it out immediately.
     
  11. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    Calibre is excellent, my Mum used them too.
     
  12. chucka

    chucka Registered User

    Feb 22, 2015
    2
    Macular degeneration and dementia

    Hi I don't have any ideas I'm afraid but I am struggling with the same issues.

    My mother is constantly frightened as she does not know anyone in the care home she is in and can't form a bond. trying to persuade the care staff that they need to introduce themselves every time they speak to her is nay on impossible. as she does not wear glases and doesn't have a stick they just don't get their head round it. My mum spends most of her time walking round the care home looking for her family as she feels safe with them. Mum now wants physical contact all the time and has even started demanding someone sleep in the same bed as her as is is " as can't expect her to be on her own all night" and "it is too lonely to be in bed on her own". I've tried a teddy bear but she says she wants a real person. My dad died 15 years ago.

    I did try knitting as my mum use to be able to knit whilst watching the TV but that only worked for a bit.

     
  13. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Well actually my sweet Beate I got it from you and IMMEDIATELY tried it and now I have a memorial plaque on my wall acknowledging you by putting your face on the Queen of Hearts xxxxxxxxxxxxxxxxxx love ya xxxxxxxxxxxxxxxxx
     
  14. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    This made me cry! She must be so frightened and she needs a key worker looking after her. How can they be so thoughtless in her Home. All the behaviour you are describing shows how frightened she is. I suggest you write a letter to the Manager explaining how frightening this is for your mum and that the home isn't meeting her needs and they need to resolve it. Then put a notice on your Mum's door saying. "When you enter the room please introduce yourself before going any further. Make sure that my Mother knows who you are and please speak to her. Make sure she knows how you are going to help her before you start and when you have finished before you leave please make sure you tell her"

    This info is on the RNIB website
    Where can I find a care home for blind and partially sighted people?
    All care homes across the country should welcome blind and partially sighted residents, and they should be accessible to older people no matter what disabilities they may have. We can offer advice and information about finding a care home if you call our Helpline on 0303 123 9999 or email helpline@rnib.org.uk. You can also find out more information on moving to a care home from Age UK.

    The website is https://help.rnib.org.uk/help/daily-living/homes-housing/care-home

    However, if you are interested in moving to a more specialist care home, permanent and short-stay accommodation is available for older people with sight loss at RNIB’s three residential homes. These are:

    Kathleen Chambers House in Burnham-on-Sea, Somerset
    Wavertree House in Hove (near Brighton), Sussex
    Tate House in Harrogate, North Yorkshire.


    I don't know if this is helpful but she really really needs a key carer who she can trust and who understands her needs.

    I don't know if any of this helps xx
     

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