1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Daughter caring for her mother

Discussion in 'I care for a person with dementia' started by Lorrainef, Jan 17, 2016.

  1. Lorrainef

    Lorrainef Registered User

    Jan 17, 2016
    Hi , I am completely new to this forum, any forum .
    I care for my mum with Alzheimer's and things are getting tough. I've started the year all positive doing lots of mindset and with great intentions. I know there are other people out there who understand how mentally draining and painfully emotional it is watching someone you love disappear before your eyes.
    I think I'm looking for strength . The strength to help my dad cope as looking at his pain is unbearable on its own. I moved back to England when I had my children so mum could be near them, help me with them . That's what she wanted but very quickly I had to look after her.
    My brother and sister help on their days off but they both work full time. Our family had turned into a tag team that grunt and grumble at each other because one of us has had more free time than the other .
    Don't know how to change things. Xxxx
  2. Sue J

    Sue J Registered User

    Dec 9, 2009
    Welcome to TP Lorraine you have come to the right place to be understood what its like caring for someone with dementia or AD. Sorry to read of your Mum's illness and its effect on your family. You will get lots of support here.

    Best wishes to you
  3. Louby65

    Louby65 Registered User

    Mar 26, 2014
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    I was in a similar position to you , children working etc looking after mum but with no brothers or sisters. I had a couple of life savers - a lunch club and our local carers cafe where i met people who understood and accessed loads of local info. It is exhausting and you need help if you are going to be able to keep her at home (or even if not in the longer term). There is a lot of help out there but in some cases it is patchy depending on where you live.

    I did a quick 'check list' to start off - things that I found useful when i was starting out. There is quite a lot of info and some of it won't be relevant but I hope it is the 'basics' and will get you started on the practical help

    Here goes.....

    You can phone Social Services Adult Care Duty Desk and ask for an assessment if there have been no recommendations from the Unit - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where they have lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days

    It is worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first

    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it

    You can also ask for a carers assessment - this will give you a break and give you some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.

    If you are not already getting it do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house. Age UK are also very good at practical advice and help - Age UK Advice line free national advice line that is open 365 days a year. To talk to someone, just call 0800 169 2081.

    I would strongly advise you to join your local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.

    The Dementia helpline is a useful number to have

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    Good luck, welcome to TP you will find lots of support here xx
  5. jknight

    jknight Registered User

    Oct 23, 2015
    Hi LorraineF! I am new to this forum as well. The people here are lovely and SO helpful. I feel relaxed for the first time in months knowing there is always someone who understands what I am dealing with x
  6. Louby65

    Louby65 Registered User

    Mar 26, 2014
    Oh I'm sorry Lorrainef , I accidentally pressed reply . I look after my mum with vascular dementia . It's tough at times but it's rewarding too , that I know she is being looked after . However I am very aware of the toll it can take on your own life and your whole family . My mum lives with me and as I work full time , I employ a carer who has been excellent . Would this be something that could be of benefit to you ? The carer gives me peace of mind and takes my mum out regularly to give me some free time . I also think the extra stimulation has helped my mum. I have siblings but they do very little and I'm fed up asking them for help . I'm sure , like yours they are looking at what each other are doing . However they seem to miss out the person who is actually doing the most , like you and me. It sounds like you have a young family so they need to be considered in this too. My mum also attends a day centre - is your own mum attending one ? If not , this could be something else you could consider . There are lots of good resources like Alzheimer's Society and the many
    'Reluctant experts ' on this forum . I say reluctant because no one ever wants to become expert in dementia because we would rather none of us have to face it , but unfortunately we do . I'm sure someone else will come along with some more advice , but please keep posting and let us help you face any issues . Best wishes , Lou
  7. Lorrainef

    Lorrainef Registered User

    Jan 17, 2016
    Im in a roll

    I'm stepping out of my comfort zone and it feels right. Excuse me because I'm trying to work out how to reply. Thank you so much for your messages. I cried just knowing I'm not on my own.
    My poor dad doesn't want to let go of anything . Non of us do really . Mum and dad turned the family home into a B&B and run it together. Well mum doesn't even know who we are now. She remembers nothing and just wants to go home. I go round everyday after dropping kids at school everyday and help dad get mum up. She sleeps in her clothes and it's such s job to change her it wash her. She screams and fights us so we have to wait till all guests gone. Dad does breakfast ms. I then clean and do rooms whilst mum wanders between me and dad .
    House won't sell , need to keep running to keep house. Money tight.
    We are all very protective over mum who has always been the typical Irish mother. Her job was to look after us. She was perfect. Is still perfect. Bloody grumpy and hard work.
    I have called the dementia helpline a few times and they were amazing but mum won't go anywhere, won't let anyone touch her, so everyone disappears and we've refused help.
    I can see that we are the problem . We can't seem to let her go because we know she wouldn't have gone whilst she was well. My dad needs my help to change things.
    Dad doesn't want me to talk to anyone because he says if I make a fuss people will come and see she might be a danger to herself and take her away. He says the last man that came to see him just plonked a load of books infrint of him and gave him facts and figures of how much it would be to lock her up.
    We need to get another assessment, I'll phone in the morning, she's changed since last time. I'm so glad I came on here. I was so scared, xxx thank you xxxx
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    I am so sorry xxx
    You are all doing a magnificent job but it really sounds as though your Mum needs some help and so do all of you need help to help her.

    You have choices, you are working together as a family and you want to keep your mum in the family unit but perhaps you all need some help to do that. It sounds as though you are all working so hard and there is a lot of help out there. You were very unlucky with the person who came to see your Dad before. The memory clinics aren't the most wonderful places in the world but perhaps some medication for your mum would help.

    The compassionate communication might help her too as she is struggling in her own world to make sense of what is happening too.

    See how you go and come back and talk through things whenever you need to, everyone is here to support you xxx
  9. Toddleo

    Toddleo Registered User

    Oct 7, 2015
    #9 Toddleo, Jan 18, 2016
    Last edited: Jan 18, 2016

    I just wanted to say "snap" and welcome to this wonderful forum.
    Mum needs24 hour continuous care which is provided by myself and my sibling; one on nights, the other on days.
    It is a stressful existence and a complete lifestyle change for me (I resigned my job to throw myself into the caring role) We are at the early stages of looking for help, and it is out there, but some geographical areas are much better catered for than others. Keep plugging away, this forum is brilliant, we all muddle along together.
    I would add that we experienced all the same issues as you, verbal abuse, refusal to wash/change clothes, slept in same clothes as she always wore, refusal to eat anything (only one type of food was acceptable) and so this went on. It was not until she was hospitalised and diagnosed with delirium and BPSD (behavioural and psychological symptoms of dementia) and started on a course of medication to calm her psychosis and anxiety, that things began to improve; and they continue to improve in lots of ways (washing/changing/eating/taking medication willingly/more pleasant to be with) the alzheimers is still a major behavioural issue, but the medication changed everything in terms of our own mental health!
    Good luck with your mum

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