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Wendy's story: living with early-onset dementia

Discussion in 'Younger people with dementia and their carers' started by HarrietD, Jun 25, 2015.

  1. HarrietD

    HarrietD Administrator
    Staff Member

    Apr 29, 2014
    4,972
    London
    In this film, Wendy Mitchell discusses getting diagnosed with Alzheimer's disease at 58. Wendy talks about planning for the future, coping with the symptoms of dementia, staying connected with friends and family and how Alzheimer's Society can help people stay connected:



    ***

    If you have any thoughts on this video, or you'd like to share your own experiences, please leave us a comment below :)
     
  2. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    Just what the media needs a look at some one getting irrespective of the illness, I assume the Video is very recent , if yes well its almost 2 years since Wendy’s diagnoses and she has obviously accepted the diagnoses and got to grips with having to adapted and be positive to overcome the disability brilliant long may it continue Wendy , with that attitude no reason Wendy can carry on independently for years & years , I am now in my 16th year and going stronger and stronger
     
  3. Olivia15

    Olivia15 Registered User

    Feb 24, 2016
    38
    This is a great video - I'm really glad that there is now more publicity about early on-set Alzheimer's - my mum was diagnosed aged 55 and although she is less able than Wendy it is great to see someone talking about it in the open :)
     
  4. Pam C

    Pam C Registered User

    May 10, 2016
    1
    My best friend was having signs such as short term memory loss in 2009, and was diagnosed with dementia in 2012 , at the age of 50, she has been in a nursing home now since February 2016, she no longer speaks and sits with her head down for hours, she doesn't recognize anyone and doesn't respond to people, I wonder what she is thinking about and if she knows what is happening to her. It's breaking my heart and I don't know how much time she has left, it's really really bad. Any help would be appreciated. I would like to be with her when she passes and I wonder if she would know that I was there. Thanks for the video and your bravery.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,584
    Kent
    Hello Pam

    You won`t know what your best friend is thinking about or whether she`ll know you are with her because she has lost the ability to communicate.

    You will know you are trying your best to support her and give her comfort , just by a stroke of her arm or a hold of her hand, by talking softly to her to let her know you are there.

    It is said hearing is the last sense to go so please keep talking to her, softly and encouraging contact. None of us know but we must keep trying.
     
  6. Red66

    Red66 Registered User

    Feb 29, 2016
    363
    What a remarkable best friend you are Pam! Like Grannie G said hearing is the last to go, how long is left who knows.. My dad had 3 different dementias and he had lucid moments, fleeting and less than 30 seconds really, but occasionally the corners of his mouth broke into a smile and then it was gone. But just seeing that warmed me, I felt like he knew for a just a few seconds we were there. There will be signs of going towards 'the end', thickened fluid, pureed food, infections setting in to mention just a few, for my Dad this stage lasted months, but for others in can be years, but the home should be able to advise you of this, and sadly, eventually loss of appetite to follow. It is so very sad that she is so young, my Dad was 73 when he passed in August and I felt that was young. I feel for her and her friends and family. Stay strong for her. I wish I could help you, Red x
     
  7. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    "Like Grannie G said hearing is the last to go, how long is left who knows."

    For a PWD 'hearing' has to be redefined.

    For months my wife could not verbalise nor did she respond to anything said to her, she would however startle at a sudden slight noise, using the usual definition she could hear.

    If I pulled funny faces at her she would smile, she could react.

    After querying this with several clinicians I came to the conclusion that the ability to hear was not enough, my wife was unable to comprehend what was being said and therefore unable to react.

    I therefore used to lean over her and pull appropriate faces as I talked, this technique worked producing changes in her facial expressions until her eye coordination went wrong and they looked in different directions.
     
  8. vanman

    vanman Registered User

    Jan 3, 2017
    11
    Warwickshire
    Great Video

    [

    Great video
     
  9. Brdy1964

    Brdy1964 Registered User

    May 10, 2017
    4
    early onset dementia

    I agree it is a relief to know the cause. I always used to be good in math with many formulas solved in my head. I found myself no longer able to do simple math and started reading clocks wrong. Family and friends complained of my repeating myself, and since early onset AD runs heavy in my family I went to be checked. MRI showed atrophy and the rest of the tests confirmed it. Cooking has been limited to soups and stews to avoid confusion, Labels placed on kitchen drawers and cabinets, and my sister has been assigned as my caregiver, P.O.A. and medical proxy.
    Simple layout changes around the house, and moving into a controlled environment, locked community, keep everything safe. AD is not the end, just another phase of life. We just try and move on graciously. :)
     
  10. Nanak

    Nanak Registered User

    Mar 25, 2010
    1,973
    Brisbane Australia
    Hi

    A friend of my daughters has just been diagnosed with Early onset Alzheimers. She is 39. It really is a disease that doesn't discriminate.

    Nanak
     
  11. Trmaskell

    Trmaskell Registered User

    May 13, 2016
    12
    North Yorkshire
    I need some help and advice please. My sister is 61 and was diagnosed 18 months ago with AD. She is now in a care home in south London and as I live in Yorkshire it’s not easy for me to visit her less than once a month. She has a super friend who visits her pretty much once a week so that is good for her.
    She sends me a good morning text every day so, in her words, I know she isn’t dead. The problem lately is that now she has lost all concept of time and doesn’t know wether it’s morning,afternoon,evening day, night so consequently I am getting good morning texts around the clock. I don’t mind about the texts but I don’t know how to respond to the ones I get at other times of the day. If I tell her it’s nighttime she gets upset and calls herself stupid and worthless, she has missed some meal times where she is still in bed as well. Any opinions or advice what to say or do would be appreciated
    Thanks
    Terry
     
  12. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,034
    Nottinghamshire
    Hello @Trmaskell
    I think I would respond to a good morning text at the wrong time of day with something neutral like "how are you?" or "hello" to avoid making her feel bad.
    If your sister has lost track of time it's likely to continue. As long as she's well looked after in her care home does it really matter?
    It might be worth asking the carers if they can get her up at a regular time to try to keep her body clock on track but I know, from what I've read here, that it's not always easy to do that.
    You can get dementia clocks that say name of day and wether it's morning, afternoon etc. Perhaps one of these would help your sister?
     
  13. Trmaskell

    Trmaskell Registered User

    May 13, 2016
    12
    North Yorkshire
    Hi Bunpoots,
    Thank you for your reply. My sister has two dementia clocks, we have tried both at different times, it seems to make no difference. The nurses in the care home have tried to get her to get up at the right time but sometimes she does doesn’t get up. I like your idea of a neutral response, I’ll try that and see how we get on.
    Thanks again
    Terry
     
  14. SamH

    SamH New member

    Feb 5, 2019
    2
    My mum got diagnosed with early onset nearly 2years ago now age 54 after a very long period of (what I think was) miss diagnosis at 1st. She has been 1 of the unfortunate that has NOT responded to the drugs. Just 1 year on and the deterioration is very noticeable!
    Non of her friends have seen her in at least a year (sore subject that will open a huge can of worms for me) and family on her side are still indenial so don't input much help if any at all.
    My dad is being very strong for me and I try to help as best I can around them and work but he is struggling! I don't know what more I can do as the time goes on. She is still too able for and form of help besides a PA but she is still in denial herself and refuses any form of help. She is angry, sad, she doesn't interact much, doesn't want to do anything at all to help herself besides sit and watch tv all day.
    It's nice to here of other stories similar please as it feels like we've been delt with the very short straw with mum xx
     
  15. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Sam welcome and I am so sorry to hear about your mum. Yes, so many of us here have been dealt a short straw with the people we love and their deterioration What do you do? Are you at college or do you work?
    warmest wishes, Kindred.
     
  16. SamH

    SamH New member

    Feb 5, 2019
    2
    I'm a full time mum working part time around hubby.
     
  17. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,425
    Male
    Cornwall
    #17 Countryboy, May 1, 2019
    Last edited: May 1, 2019
    Just what the media needs a look at some one getting irrespective of the illness, I assume the Video is very recent , if yes well its almost 2 years since Wendy’s diagnoses and she has obviously accepted the diagnoses and got to grips with having to adapted and be positive to overcome the disability brilliant long may it continue Wendy , with that attitude no reason Wendy can carry on independently for years & years , I am now in my 16th year and going stronger and stronger

    Well just saw this reply I wrote in June 2015 ;), I hope you still going strong Wendy :), I am now into my 20th year dancing on quietly few medical issues :(:D:rolleyes: but hay I am 76 wearing out gradually ;);)

    Cheers
     
  18. Juba

    Juba Registered User

    Jul 27, 2019
    25
    Hi Sam,
    My husband was diagnosed at age 57 and has been, and is, in complete denial since 'day one'. Fortunately we did have some improvements with medication - sertraline, memantine and donepezil for starters. As he's become 'less able' and having more difficulty accepting that he now he needs help with almost all basic tasks - washing, eating, dressing etc. the medication has changed - mainly to help reduce his anxiety and he is now on lamotrigine (initially due to a couple of seizures but continued to help stabilise his mood swings) and rispiridone. I think all of these drugs when introduced have helped in terms of reduced anxiety. However, my husband refuses to admit he needs any help and often becomes angry and hostile when help is offered. I've kind of learnt to walk away and just go back after a while - sometimes going back several times. We've joined a few groups to get him out the house. He often resists going anywhere but I can usually persuade him and once he's there I think he actually does find the activities ok - we do walking and singing. I also find these groups invaluable in terms of meeting other carers and they are great with my husband - who if course, is usually polite and convivial towards them! We now have a volunteer from 'Side by Side' (Alzheimers Society) visiting my husband for a couple of hours or so each week. Early days but he has has accepted this guy coming in and going for a walk with him.

    We don't watch too much TV as this could sometimes 'throw up' problems so we tend to have music playing most ofl the time and I also made up a digital photo frame which is proving great in terms of distraction and also memory prompt as - although he doesn't know who anyone is he can stand and remember occasions when he sees the photos.

    I've explained to people (professionals as well as friends/family) about my husband's denial and most people are great. I usually invite someone into the house as a friend of mine and we keep things very informal. I've even managed (I think) to get the social worker to understand why I wont talk openly in front of my husband. It's so difficult knowing if we're doing the 'right thing' when someone wont admit their condition and therefore cant be part of planning their own care. Ive also found my husband's family pretty unhelpful tho some friends have been great but just struggle with seeing the changes. Stay strong
     

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