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.

Why some people can and I can't

Discussion in 'Welcome and how to use Dementia Talking Point' started by ScaredyCat, Jun 14, 2019.

  1. ScaredyCat

    ScaredyCat New member

    Mar 31, 2019
    4
    Sorry...very very long post.
    Every post I've read so far shows that people have been selfless with the care they give. I feel so guilty that I can't seem to manage and am unsure if shifting a lot of the blame on to my mum to justify it to myself is reasonable.
    After going for a memory test at the insistence of her gp over 3 years ago she refused to return for a follow up appointment. She finally went again after months of persuading,begging, shouting and crying by me and was diagnosed with alzheimers.
    I live about 2 hours drive from her and suffer from bipolar and have had numerous isssues with my back and sciatica for about 3 years. My mum lives alone with her dog and has no friends. Although not in denial she threw away all the literature about the disease, refuses to go to any social groups, won't accept any visits for assistance, won't change her diet.
    She asks me for help and advice over the phone which I can sometimes deal with or not and then she argues with me about any suggestions I make or wants me to drive over straight away.
    Her house has been on the market on and off for about 9 months so that she could move to warden accommodation near me. Lots of viewings but no offers. She kept changing her mind and I was the one who had to arrange appointments, remind her etc. I had viewed 7 properties near me by then and sent her pictures with pros and cons and details of the towns they were in. Currently she definitely doesn't want to move.
    Her dog isn't old but is losing his sight. He howls and barks constantly. The neighbours have been very angry with her. He's got very fat because I think she forgets she's fed him. She doesn't give him his eyedrops. I have offered to sort something out for both of these things but she said no. I have put her pills on a docket box after weeks of persuading her to do this
    She then said a few days later she said she didn't need it

    I last saw her a few weeks ago and had brought lots of things she asked me to do that took a lot of time, like detailed print outs and instructions on how to view her bank account online. She sighed said she didn't need it and acted like I was trying to make her feel bad. I lost my temper and drove home after an hour.
    Since then my partner phoned her and said I was worried and had been crying. She said that I am a very troubled person, always struggling and my behaviour was awful when I saw her.
    I've had little to do with her since then. She wears me out, and doesn't seem to help herself or help me help her. I understand she must be distressed and people can have a change in personality from this disease. But I genuinely don't think she's that bad yet.
    I haven't abandoned her. Im seeing her monday for a 3 month check up at the memory clinic then driving her 50 miles to the consultant for her dog. But otherwise I can't be doing with it anymore.
    I feel I have let her down but just can't do it anymore.
     
  2. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,655
    Female
    All the things you mention - changing her mind, arguing, asking you for something then saying she doesn't need it - are symptoms of the disease. I know it's easy to take it personally and/or think she is being deliberately awkward - I went through the same with my mother, I couldn't believe she couldn't do simple things, even with instruction. But she really couldn't.

    I lived a long distance away and didn't do any hands-on care, but I took over her finances (with pre-arranged LPA) and when she had exhausted her helpful friends' patience I arranged daily carers for her (self funded). The carers were very good and did absolutely everything she needed - housework, shopping, meal preparation, taking her to doctor's appointments and taking the cat to the vet (and making sure he had the right amount of food - my mother used to overfeed him too).

    So if your mother can fund this type of care, now would be a good time to arrange it. She needs help but there is no reason you have to personally provide it - I know I couldn't have. If you do arrange professional care for her, don't discuss it with her - obviously, she'll refuse. Just tell her it's happening. I never referred to them as 'carers', I said a nice lady was coming to help with things like getting the cat to the vet.

    If you haven't already got LPA, you need to arrange this asap - you can get the forms but she needs to sign them. If you need more info, members will be able to help.

    In the meantime you might find things slightly easier if you slightly change the way you deal with her. For example there is no point telling her you've been upset - as you have found she won't care and will make excuses. This is because empathy is lost very early in the disease. Similarly, it is fruitless asking her opinion or expecting it to be consistent, because her reasoning is unreliable. You might find this link helpful.

    https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,549
    Female
    South coast
    Hello @ScaredyCat and welcome to DTP.

    Unfortunately your story is all too familiar. Your mum has no idea how much all this is impacting upon you. With dementia their world contracts and narrows so that all they can see is their own wants, desires and comforts. However much you give it is never enough and nothing that you suggest is ever right.

    This inability to be able to do things that will help them and to refuse things that will make life easier for them is a symptom of dementia - in their mind they really dont need any help at all and can do everything; then faced with the reality of the situation they make excuses, but actually the fact is that what they want is beyond them (wanting to do banking on line is a case in point)

    At that distance you are never going to be able to provide what she wants (even if it were consistent). As Sirena has suggested, just get on and organise things. If you ask someone with dementia if they want to do something their answer is almost always no, and if they do agree, they will probably change their mind and not remember that they have previously agreed.
     

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