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.

  1. netsy22

    netsy22 Registered User

    Oct 31, 2015
    257
    My mum was diagnosed with mixed dementia (not specified, but not alzheimer's) which mainly causes her to have memory loss, both long-term and short term memory are very poor.
    We moved her into a flat in an extra care block, but she doesn't need physical care so we don't have a care package for her. She won't avail herself of any of the social activities in the block, and entirely relies on me for her whole life. I clean, do washing for her and take her shopping. She will not even go to the bins on her own. I organise her pills and handle all her financial affairs. She has handed her whole life over to me and has become a child. I already have an adult daughter with moderate learning difficulties who is dependent on me and my husband is supportive, but has bouts of ill-health himself, and is not strong emotionally.
    My brother lives 3 hours away and swans down every 6 months for a brief visit. I have a dear cousin who comes to see her regularly (every few weeks) and who is supportive, but also lives far away. I had 4 years of retirement when I could please myself and to be honest have never felt close to my mother and we have always argued. She presents herself well to strangers, wardens, etc, and colours her hair, wears make up and refuses to associate with those "poor old things" who walk with sticks or who are in wheelchairs! Not realising that they are still independent and have their marbles. She is 87 and I don't know how her particular form of dementia will progress. She has a thyroid condition and a mild heart condition and osteoporosis which are all controlled with drugs. She is quite well and stable at the moment. She is a pleasant and loving person but her memory hinders her life and restricts it enormously.
    Now the moan - having to look after her is a burden to me, I am sorry to say I wish I knew how long it will go on. I need to make the most of my own life and to live as long a life as possible for my daughter's sake. I know very many people have it much much worse and do it with a smile so I apologise to all of them. I try to be positive and patient but it feels like a ball and chain round my neck. Any comments even to tell me to put up with it will be welcomed!
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,719
    Female
    London
    You don't need to have physical needs to warrant help! Ask social seevices to give her a needs assessment, and more importantly, a carers assessment for yourself. Your right to this is enshrined in law. Even if they won't fund anything in case she is self-funding or tell you there is nothing they can help with, they still have to give you an assessment, as your rights as a carer matter. You matter. You are entitled to your own life, so think what you want out of the assessment: do you want her to go to day care, or if that sounds too much, maybe a nice lady from a Befriending Service? The sitters from Age UK could chat with her, do activities or take her shopping or for a walk. If nothing else, social services should signpost you to what support is out there. They could also refer you to telecare for any gadgets to aid with her memory, and to an OT to check out her flat for any improvements like grabrails, if she hasn't got them already. I find our local Carers Centre, Age UK and Alzheimer's Society very helpful, also in respect of any forms that need filling in. You might also want to think about hiring her a cleaner who also puts washing on? Something like Attendance Allowance might help pay for it.

    I'm afraid that "Keep calm and carry on" is of not much use to stressed carers, and no one here will ever tell you to shut up and put up!
     
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    So agree with Beate, there are lots of different options which would help you and relieve you from all the caring you are currently doing without meaning a move for mum at this stage.
    Age UK will send someone round to help you with the Attendance Allowance forms 0800 169 2081 and they are open into the evening. If she isn't yet receiving attendance allowance do apply as soon as you can as it seems as though they are going to stop new claimants soon and it does make a difference.

    The person I am caring for goes to a day centre and it makes a huge difference - only 3 days a week but the other gaps can be filled too.

    A carers assessment for you will give you some free hours of care as well
    it would be worth looking up your nearest carers cafe (through your local carers organisation) - you will get lots of local info there and some friendly faces and some coffee and cake!!! We have one once a month and we also have a carers card which gives discounts to various bits and pieces.

    Take care x
     
  4. CucumberWhisky

    CucumberWhisky Registered User

    Sep 23, 2015
    56
    Surrey
    I know how you feel, netsy, except that in my case it is 'me, myself and I'. I sometimes feel quite calm and content to look after my mother; at other times I wonder why I'm doing it (duty mainly). Earlier this week I made a list of my wishes. It is rather long and still not finished but I will carry on doing what I have to. I was reminded by another post earlier this week too, of 'Desiderata' (apologies for not remembering who posted it) which I 'found' in the 1970s and had forgotten.

    Big cyber hug and thinking of you. CW
     
  5. netsy22

    netsy22 Registered User

    Oct 31, 2015
    257
    Thanks for the advice

    She does get Attendance Allowance so could afford a cleaner. She won't like it but I could take her out instead of having to do the chores.
     
  6. netsy22

    netsy22 Registered User

    Oct 31, 2015
    257
    Thanks for the advice

    She does get Attendance Allowance so could afford a cleaner. She won't like it but I could take her out instead of having to do the chores.
     
  7. netsy22

    netsy22 Registered User

    Oct 31, 2015
    257
    Thank you for the hug

    I have just read Desiderata it gave me tears!! :)
     

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