1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. wynnie12

    wynnie12 Registered User

    Jan 9, 2015
    4
    I recently moved in to a house (August 2014) as joint tenant to care for my grandmother who is 86 as she was struggling living alone. A few weeks after moving in she was diagnosed with Alzheimers/Vascular Dementia. I also have three children two girls aged 11, 9 and a boy of 3. I am struggling to cope with my nans illness and in last month or so she has been awake throughout the night wandering and calling out. I am struggling with lack of sleep and trying to keep everyone happy. I am also worried about the effect living with a dementia sufferer is having on my children, particularly my eldest as she is frequently woken throughout the night (she is due to start secondary school in September). I wanted to do my best by my nan as she has cared for me throughout my life but she is so angry towards me and also the children at times. I am doing everything for her but she is becoming very nasty towards me which is hurtful. I feel I am being pushed to my limits daily. My nan has three sons but none of them will have her live with them (although they do have her for weekends occasionally). I feel trapped in my own home and my mother (nans daughter) has been hopsitalised for last seven years with severe Bi-Polar, so I am also dealing with this. Any help/advise of next steps would be much appreciated.
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi wynnie12 and welcome
    Reading what you've said are you in the UK? Help is available but it depends on where you are assuming you're UK just a region would help.
    K
     
  3. wynnie12

    wynnie12 Registered User

    Jan 9, 2015
    4
    Hi there. Thanks for replying. Im in London.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,884
    Kent
    Hello wynnie

    When you moved with your grandmother, did she sell her house to share with you? If so you might have a problem.
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    Sorry for your situation, Wynnie, it must be very hard. You need to speak to her GP about medication to control her aggression and her night wandering. Don't accept that "this is just dementia" there are drugs which can be used although you might have a bit of trial and error to get it right.

    Also ask for a carers assessment for yourself as you need someone to spell out what help there is for you.
     
  6. Beate

    Beate Registered User

    May 21, 2014
    11,746
    Female
    London
    You should not have to do this on your own. Call the First Response Team of Adult Social Services in your borough, tell them that you live with a vulnerable adult at risk and ask for assessments - one for her and one for you as a carer. Think about what you want - would day care help you or carers coming in or sitting service so you have a few hours to yourself? Enquire about respite.

    Take her to the doctor, they might be able to prescribe something for the sleeplessness and aggression.

    Get in touch with your local Age UK and Alzheimer's Society for practical and moral support. They can help you fight the authorities, fill in forms (your Mum qualifies for higher rate Attendance Allowance if she needs help at night), or just provide social activities like coffee club or Singing for the Brain.

    At the end of the day though, you have to think of your family, and if it's not working out and affecting your kids detrimentally, you might have to think about a care home for your nan where she will be safe and looked after. Remember that they have duty of care, not you.
     
  7. wynnie12

    wynnie12 Registered User

    Jan 9, 2015
    4
    Thank you all so much for your responses...it's great to know i'm not alone although upsetting also that so many people experience the way in which this awful illness affects your loved ones. My lovely nan prior to getting Alzheimers would never have ever been nasty to me or said anything bad to anyone so I have to keep telling myself that it's not really her, but it's hard. I have a joint council tenancy with my nan, we both gave back our separate flats to the council live together in a house. I am in the process of trying to get help via social services, nan is adamant that she doesn't want to go to day centres or groups and where I am running around doing school runs, shopping and visiting my mum in hospital she gets angry with me saying that I'm always out of the house. She is frustrated and bored and I know she finds the busyness of our home difficult. She is never left for more than an hour or two and has an alarm incase of falling. I have spoken to members of my family and they don't feel that she can live with them which is upsetting as these are her children but I understand their worries too. The dementia nurse has advised me to give nan her Donepezil (only 5mgs at the moment) at night time and last night was the first night that she had it, she's been used to having it in the mornings and has only been taking it for around 7 weeks. My eldest daughter (11) was very tearful this morning due being woken throughout the night and this upsets me. I feel like I am taking away their enjoyment of childhood making the decision of living with my nan. I never knew that she would be diagnosed with this disease. The thought of care homes scare me, but I am getting to the point where I am considering this option to save my own sanity. My own mother is a long term inpatient on a psychiatric ward so I am also dealing with the guilt of her being there. My nan at times seems ok, can hold a short conversation, so in some ways I feel that she is not ill enough to go into a home, but I think she is in later stages. She is incontinent and rarely undresses into her nightclothes. She is completely unaware of where she lives, date etc.. Sorry for the long message and thank you. xx
     
  8. marionq

    marionq Registered User

    Apr 24, 2013
    5,902
    Female
    Scotland
    The guilt which this disease imposes on carers is often intolerable but all the more so when children are involved. It is not fair to the children to disrupt their sleep and therefore their health and education. You need more input from social services and ultimately a care home may be the answer for all of you including your grandma.
     
  9. wynnie12

    wynnie12 Registered User

    Jan 9, 2015
    4
    Yes I agree. It is starting to have an effect on them and I really need to put them first. I have contacted Social Services today and I have a social worker coming to see me Monday morning. They have given me an out of hours emergency number should I need it. I popped out with my son for an hour this morning and when I returned my nan was waiting outside on the doorstep for me.
     

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