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. elvismad

    elvismad Registered User

    Jan 8, 2012
    289
    I dont know how you all cope. I have watched my mum lose all track of who she was and her only constant seems to be me. I struggle with working 10 hour days and an hour travelling each way and visiting mum every week day night and for a good chunk of the days at weekends. I no longer holiday with my husband and all the appointments for foot clinic, blood tests,Diabetes revies, medication review, optician and lymphadema nurse are down to me to sort and take mum to. I feel like a total failure. I am watching my mum fade away and know there are years of life left in her. I have no life, its all about work and mum. I feel so lost and useless . i dont have children, my brother lives too far way to help (his choice and I resent him for it). Tell me how to accept all this and deal with it because I am failing dismally
     
  2. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I wish there was a magic wand to wave and make everything easier. Have you asked for a carers assessment via the social services? You could then see a social worker and ask that they put some caring in place. Your Mum will probably have to pay for it but there's a limit to how much they have to pay. This might ease some of it for you. It's only when this happens that you actually realise how little social care there is, and how bad the cuts have been for all the councils - there is no money anywhere. Don't beat yourself up, you are dealing with a terminal illness that isn't given the care and help that a terminal illness should be.
     
  3. Bill Owen

    Bill Owen Registered User

    Feb 17, 2014
    182
    BRIDGEND
    Ho no you are not

    yes it is very hard.you can get care alowance to look after you mam .plus pip this will be in you mam name. All will help you with you money. Is not easy to look after someone with this illness. But its not there fault. Im dislix so baer with my spling
     
  4. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Firstly, welcome to TP. Best place to come that will enable you feel normal when dealing with the blasted disease. Nobody will judge you, lots have experienced the same as you and can advise you on what action to take or to try something else. But best of all never feel alone, and it's 24/7 !

    Secondly, don't be so hard on yourself! You have done amazingly to get this far, as well as deal with everyday work and normal things for your existence like bill paying food shopping as well as your mums. That's not an easy task I know as most of us are doing the same everyday. Guess what, we are all tired too just like you, it's known as your body and brain telling you to slow down, take your foot of the pedal even just a little, a cut yourself some slack, after all who says you have to be superhuman?

    I was taken on my first decent holiday this year by my eldest son for a week, after caring for my elderly parents both with dementia and my youngest son who has anxiety issues. The holiday did us good, but the sad part was it made me realise I too should be living a life like other people, not just taxiing and attending hospital appointments, seeing doctors and getting test results every week of my existence. And that's what it comes down to I was existing not living.

    Since then I have tried to convince parents they need more help but they are too stubborn to accept it, even to have a cleaner or mow the lawn. So I now have taken a step back and don't visit them everyday but do phone them everyday. It will take a crisis before anything changes so I'm afraid that's what will happen and there's not a thing I can do to change it, so until then I pace myself and not make myself so available to take them for coffee etc. I'm afraid I have learnt you have to be selfish sometimes with this disease as you will end up a victim of its nature, and will suck the life out of you literally.

    I also know how hard it is to see the physical and mental decline of your loved one, and how infuriating it is when brothers seem to be unavailable when they want to be. I just know that at the end I know my conscience is clear and I tried my best which is all you can do. Try grabbing little things for yourself, a walk round the park, a cup of tea in the garden on a nice day, or treat yourself to a glass of wine (bottle even) for the end of a day. But don't think you aren't doing enough you are doing too much! Review the situation, maybe tell TP what you need help with, carers? Time management? GPs? And I'm sure somebody will be able to help. Keep us posted please.
     
  5. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Elvismad, you are not failing - far from it. You are flippin' fantastic.

    But - I don't think you can or should carry on tackling this all by yourself. If you do, the thing that will fail, eventually, is your own health. You must do something that will enable some of the burden to be taken from your shoulders.

    As others have said, get a carer's assessment from social services. This assesses your own needs as a carer, which may include having respite organised and other carers to take over some of the tasks that you do at the moment.

    Remember that your life is just as important as your mum's life.

    Do keep posting - oh and welcome!
     
  6. elvismad

    elvismad Registered User

    Jan 8, 2012
    289
    I have had the carers assess via the alzheimers society and it was no help. I can't have numerous random people coming round and mum does not accept her diagnoses saying she just has a bad memory.She is 82 with various other health issues. I simply don't have the patience or the strength to deal with this. Weird thing is mum is more loving now than she ever been towards me as a child and is talking about my work life as her own. I feel like her mum. I deliberately didn't have children because I wanted to be impulsive as an adult. Now I have more responsibility than I could ever have
    had with a child with none of the future promise. Every instinct I have tells me to run but I can't.there is none else. I know I am whining and you all deal with this but I just cry at the injustice of it all.
     
  7. Flake

    Flake Registered User

    Mar 9, 2015
    222
    Please contact Social Services - Adult Social Care and get an assessment. Your mum needs some care and you need a break. Try telling her the love lies, that you need a little help as your work is busy etc etc. My mum went through a stage of denial, then got admitted to Hospital and that was the turning point. I had to get care in to help as I work full time and she needed held 3/4 times a day and I couldnt manage that. I do everything for else her, shopping, appointments. money management and worrying. My brother has no part in her life and has not done so for years, just a Christmas card.

    Dont be so hard on yourself you are doing a great job, its just that sometimes you have to take a step back. This site is brilliant so please come back and let off steam, rant, and talk. We are all in this together. Good luck xx
     
  8. Tara62

    Tara62 Registered User

    Yes, I totally understand that. That's exactly where I am. It is total and utter hell.
     
  9. Bessieb

    Bessieb Registered User

    Jun 2, 2014
    108
    I completely understand where you are at Elvismad. I too am struggling to accept the situation I have found myself in. I do have children - and I was expecting them to be dependent on me - but now I have two additional dependents and they are far more challenging than the children have ever been. The resentment and frustration is so difficult to deal with ...and the guilt for feeling this too.
    I do hope that you can get some help from SS soon - it does sound much needed.
     
  10. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    How about tackling the problem from a different prospective. YOU go to your GP and ask for medication for you! Speaking from experience I have felt how you do now and if you speak to your GP it will help you be in a better place if you take a short course, or even long if needed, of anti depressant or anxiety medication. It would help to get you in a place where you would feel more able to cope and more capable of standing up for yourself with the demands made by others. It would also help with getting help for your mother if you told the assessment team you found it necessary to have this medication as it was too much to deal with alone.

    Please consider this option, there is no shame in asking for this help, it's a step in the right direction and many people rely on this help to live everyday without the amount of hassle you are having right now, so hold your head high.
     

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