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.

Hello - feel like I have a million and one questions!

Discussion in 'I care for a person with dementia' started by dannyem, Mar 31, 2015.

  1. dannyem

    dannyem Registered User

    Mar 31, 2015
    13
    Afternoon all,

    I have recently found this forum and have found it really good reading and very informative. As some background, I am caring for Mom, who was diagnosed in late 2014 with Alzheimers. She is currently taking Aricept and anti depressants. She seems to have gone quite quickly "downhill" since then although (and from what I read its quite a common theme) she insists she is "fine". I work full time but try my best to call her or pop in every day. I usually take her a meal and see her on a Saturday.
    My first question really is.....I feel its time that maybe she is perhaps in need of having carers in daily .....I know she will be dead against this - I just wondered what others have done. She recently scored 5 more points on the test they have them do but the social worker said this is also quite common.

    I am due to see the social worker on Thursday but as yet they havent been a massive amount of help - although very understanding but not really anything constructive. They did suggest various groups for mom to attend but she wasnt interested blaming the weather etc.

    So thats my background, just wanted to post and say hello, and find out how others get around the problem, mom doesnt have a partner so lives alone if that makes any difference to carers going in etc.
     
  2. Pottingshed50

    Pottingshed50 Registered User

    Apr 8, 2012
    514
    Hello Dannyem and welcome to Talking Point.

    If you feel that Mum could do with a little bit of help (better to put it that way to her) then as you say you can have a word with the Social Worker on Thursday. I would imagine that 99% of people have the same reaction to having help that you think will be Mums , and that is to say no I dont want it. There does come a time when we all need help. I am hoping that others will post on here with some more practical help than I can give.

    Keep your chin up, you are doing a wonderful job.
     
  3. marionq

    marionq Registered User

    Apr 24, 2013
    5,753
    Female
    Scotland
    One of the main advantages of going to Alz groups at this stage is that it gets her used to mixing with different people who have the disease, who are carers or who are trained staff. Later if she needs day centre or respite or a care home she will be more amenable if she sees those as an extension of what she has been used to.

    There is a lot of enjoyment to be had at singing groups, bowling, film groups etc so if someone in the family or from social services was able to take her along she would enjoy it.
     
  4. florabunda

    florabunda Registered User

    Nov 13, 2014
    24
    It's really hard getting people with dementia to recognise they need help.
    I am lucky, my mum will go to the day centre, although she complains that some of the other people are unkind to her - I am afraid it's often her who starts the arguments! I tell her they have their problems too.
    She won't have carers, and I don't blame her, they are always in a hurry and it's often different people. Again I am lucky, I found a lovely private cleaner who gets on well with mum. So she does not get all the help she needs, but she does get what she will accept, and I do my best to fill the gaps.
    Keep trying and good luck.
     
  5. little shettie

    little shettie Registered User

    Nov 10, 2009
    218
    Having cared for my with AZ for over five years now I have been through similar experiences. Mum has always been in denial of her illness which has made dealing with all the stuff that goes with this awful disease, i.e. social services very difficult indeed. No one can mention the fact she has Az as she will fly off the handle. I found it so difficult getting any assistance from SS and the social worker I met first of all was worse than useless. Told me if mum didn't want care then there was nothing they could do!!! It took me to complain to the Head of SS to get some help! I must say as hard as it was, it was really when mum was deemed to no longer have capacity that I found it much easier to get the things she needed. Sadly with all the cutbacks, SW are I think told to only give care where absolutely needed, but it means many slip through the net. I would out my foot down and insist mum has some care even one call a day to begin with just to give you peace of mind when you're not there and once your 'in the system' so to speak, its easier to get that increased as her needs increased. My mum would never go to any day centres. Her response was always 'what do I want to go there for with them old girls all sitting around asleep'!! Lol! Once we lost my dad, mum went downhill rapidly and so she now lives with myself and hubby, as I found long distance caring so very stressful. When she lived alone she had carers four times daily but tbh, they were worse than useless and mum would never let them do a thing to help her. Sadly not one of them were over the age of 21 and had little idea of how to coax and encourage mum. That was because SS chose the care agency but now I have gone onto direct payments and you can choose your own carers which I would say has been a revelation! There is help out where and I would encourage you to seek as much help as possible now. Things can change overnight with his illness and the more help you have on board now, the better for mum, and you. xx
     
  6. angelface

    angelface Registered User

    Oct 8, 2011
    1,086
    london
    Have you applied for attendance allowance for your mum? That is quite useful.

    Maybe you could start with a cleaner, telling mum that really this is to help you - because you can't cope with all you have to do. Not a lie after all, I don't suppose?
     
  7. marionq

    marionq Registered User

    Apr 24, 2013
    5,753
    Female
    Scotland
    Day centres

    I too had the notion that day centres were full of old people sitting about in front of a TV sleeping. John has now been four times to his centre -. Last week apparently he danced all afternoon, the week before they had an entertainer in and John had a beer, he has a good lunch and plenty of company and chat. It is well worth getting started with these centres as I hope it will make things easier at future stages.
     
  8. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    Also just to check that you know she can apply for reduction of council tax if she gets attendance allowance or another qualifying benefit. If she lives alone she should get 100% reduction.
     
  9. Hollyx

    Hollyx Registered User

    Jan 12, 2014
    8
    I too have been reading and finding really useful info on Talking Point!
    I thought I would try to actually contribute.....
    We are self funding - but 3 years ago when the AZ was diagnosed, we found a carer, or 'buddy' 'friend' through a care agency. This 'friend' (carer) came for 2 hours twice a week to chat, go for walks, do painting/colouring ..... it was perfect! A bit of company when someone is on their own. Now things have moved on and more hours are needed but we are lucky that we still have the same carer every day with some extra new faces added in
    Hope this has been useful x
     
  10. dannyem

    dannyem Registered User

    Mar 31, 2015
    13
    Thank you everyone for your replies.

    I m sorry I havent responded before but have had quite a full few days with one thing and another.

    I met with the social workers last week and they are due to visit mom tomorrow, I havent warned her of this I will just say they have called and are dropping in.

    i have been reading the archives and lots of the issues seem to re occur regularly so I feel at least some comfort that I am not alone in experiencing these odd things they say/do/think.

    We have had to stage a lock changing act for Mom which hasnt settled her at all - she still thinks her neighbour is going in to take her stuff!

    I popped in this morning before work and found her porridge frazzling away set for 30 minutes! I have told her its broken and will try to get a simpler one to use - although I have a feeling she wont be able to work that either. The turntable does seem slightly uneven so not a complete lie. A love lie as I have come to learn from this wonderful forum!

    I know she will be dead against any outside help as she is "fine" and "coping well" according to her. As carers we know this just isnt true - I do find it difficult to lie to her as my "old" mom would be so cross that I was fibbing!


    Thanks again for reading and replying!
     
  11. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hi dannyem :)

    I too care for my mum, who lives alone and for a long time refused care. There came a point when I knew she needed help, and I simply couldn't be there enough. We started with carers for 15 mins per morning, 'to reassure me that she was okay and had taken her meds', and bit by bit, have managed to add visits, so that now she also has six lunchtime visits a week. Like you, I found it really difficult to 'go against her', but basically I knew she would fade away without the help. Now she barely remembers the care visits, and all the different carers have merged into one person in her mind.

    I still see mum most days but that's because I can, and I want to. Believe me, I know how hard it is to get a mum to accept outside help.....but I can't imagine where we'd all be now without it.

    Good luck, I hope you get some support soon.

    Lindy xx
     
  12. rollercoasters

    rollercoasters Registered User

    Apr 7, 2015
    5
    Hi
    Though at first I was reading about my mum!
    Trying to get mum to go to meetings was I big no no but happy to go out at strange times and have me running around to find her.At first big battle with pill taking must say got very good at ducking.Mum also lost a huge amount of weight in a year and even though I was going in everyday cooking dinner next day I would find dinner in the bin on the side or back in the oven or handbag .At least Social services have arranged a meeting more than they did when I contacted them.They seemed think that as mum could get out of bed she was fine to look after herself so good luck with them,remember to stand you ground.In desperation I spoke to her doctor who arranged carers to come in during the day and as she was proned to wandering a night sitter.I can say that I had my first sleeps nights for months.Welcome to my world and keep your chin up and do not listen to know alls who think they know best .Speak to GP they are far more helpful.i was worried about carers but mum was fine,i was there when they first came in and it surprised me that although she at first did not want them she was fine,think it was the company more than anything.Iwish you luck and remember you are not alone.
     
  13. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    Hello again

    I also went to see mum's GP in the end, and he referred her to social services ( not that it helped, but that's another story). The thing was, I was able to tell mum that her doctor said she needed the helpers, just for the moment, ' while she got better'. Love lie, yes, but it got us over a hurdle, and as I say, they now all appear to have merged in her mind.

    I agree, a good GP can be key :) xx
     
  14. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    Totally agree with Lindy50 and similar posters. Everyone will need help at some stage and later it becomes vital whilst you struggle to keep them at home. Whether its for a lunchtime snack [we started with this] or cleaning, do get Mum used to people coming in and out of the house. Just say whatever works, often my bro used to go out over lunch time so that carers and Mum had a free 'run'. You never know, there might be the odd one she takes to.
     

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