1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Jean1928

    Jean1928 New member

    Jun 28, 2018
    Hi, My mom has been diagnosed with unspecified Alzheimer's and is a shadow of her former self. She has been housebound since falling at home in 2016 with my dad who also fell at home two weeks' later. Earlier in the year she was able to walk with the aid of a frame but then after a fall out of bed mom was hospitalised for eight days and was not encouraged to walk. She began to have delusions on the ward, believing at one stage that it was snowing in her room.

    Fast forward to now and due to mom having an unstageable wound on her cocyx the District Nurses said she must stay in bed, where she has been for the past three weeks. The Physiotherapist does not agree that she should be in bed as her muscles are wasting away. The Tissue Viability Nurse suggested that mom should be out of bed for an hour and then put back into bed so that she can be washed in the morning in the bathroom. However, the carers manager will not allow his staff to lift mom due to her frailty and guidelines. My mom pays for all her care as she is just under the threshold. Carers visit three times a day and the manager has informed the family that any additional equipment, e.g. a hoist, will have to be paid for as mom is classed as a private patient. At the moment mom is being washed in bed and is prone to UTIs. She is losing her dignity and it seems very unfair that she is confined to bed. She has lost her mobility and I think that being in bed is making her dementia worse as she is now seeing people who aren't there.

    I would appreciate any advice. We have tried to set up an MDT meeting but so far without success. I left my job in July last year to care for my parents, although I haven't registered as their carer, I'm just one of their daughters. I visit them every day in the week and have phone contact to check how they are when I'm not there.

    Thank you for your time. I'm not sure where to turn ......
  2. Starter

    Starter Registered User

    Oct 10, 2015
    Hi Jean1928, I’m sorry I haven’t any advice for you, just wanted to empathise with the feeling of being told different things by different professionals, it drives you to distraction! Hopefully someone will come along with practical advice for you xx
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    N Ireland
    #3 karaokePete, Jun 28, 2018
    Last edited: Jun 28, 2018
    Hello @Jean1928, you are welcome here.

    You have such a lot going on and my experience is not sufficient to advise you.

    I do think you would benefit from talking to the experts on the help line and the details for that are

    National Dementia Helpline
    0300 222 11 22
    Our helpline advisers are here for you.
    Helpline opening hours:
    Monday to Wednesday 9am – 8pm
    Thursday and Friday 9am – 5pm
    Saturday and Sunday 10am – 4pm

    Beyond that I wonder if you and your parents have had a needs assessment, to which I believe you are entitled. Here's a link to the AS Factsheet about the issue https://www.alzheimers.org.uk/sites...assessment_for_care_in_support_in_england.pdf
  4. Jean1928

    Jean1928 New member

    Jun 28, 2018
    Thank you Starter, It's a comfort to be among those who truly understand.
  5. Elle3

    Elle3 Registered User

    Jun 30, 2016
    Hi Jean1928, welcome to Talking Point, I’m afraid I can’t give you much advice as I have no experience of what you are dealing with, it sounds very complex and it sounds like you definitely need support, you have my sympathies.

    All I can say, if you can get yourself registered as their carer with your local carers centre, they can offer so much advice and support, especially if you haven’t looked at things like careers allowance, attendance allowance and council tax disregard. I’ve also found Social Services a great help.

    Elle x

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