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.

  1. Macduff

    Macduff Registered User

    Feb 16, 2018
    48
    Male
    West Sussex
    When is enough, enough?
    Is it when mornings and bedtimes end in confrontation because teeth cleaning, washing and dressing/undressing are things she complains about and takes forever to do? I never get to kiss her goodnight because she is ranting until the moment I turn out the light and walk away.

    Or during the day when conversations frequently end in confrontation?

    I've never sworn at my wife in the 43 years we've been together but now she swears at me, in public sometimes too. I hate it but I've now started to mutter expletives under my breath as I walk away to avoid a showdown. That's not good is it?

    Maybe it's when you spend every day cleaning the loo and floor because she has a bowel problem and refuses to see a doctor? Of course the mess isn't her fault anyway. It's the pills I give her.

    Why is she pleasant to everyone else but me? If I offer her assistance she shouts don't touch me.

    Could it be because she refuses all offers of help through social services. Will not have anyone in to help, even to have a cup of tea so I can walk the dog or pop out to the shops?

    Could it be because she doesn't see my pain, my frustration or see my tears of sadness?

    Perhaps it is when she wakes me up twice during every night to say 'nobody is helping me' and needs to change her nightie or Tena panties?

    Is it when you become Mr Nobody?

    I wonder.
     
  2. Wishful

    Wishful Registered User

    Nov 28, 2014
    78
    I don't know the answer but I think I'm close to enough is enough.

    You need to contact Social Services and get the help you need. Your wife may not like it at first but would get used to it. Perhaps a carer for just a couple of hours at first so your wife knows you're coming back.

    I really don't think the PWD has any concept of what you go through but if you don't take care of yourself then who will take care of her if you become ill.
     
  3. Hazara8

    Hazara8 Registered User

    Apr 6, 2015
    354
    The fact that you are there means you are 'Somebody', despite dementia treating you with contempt. When there is capacity we can argue and give as good as we get, somehow resolve differences and move on. Dementia knows nothing about that and when it claims a loved one as its own, one has to see that as just that - dementia the antagonist, NOT the one it inhabits. Very difficult of course. And something not really understood by so many outside that sphere - the unending regime of 'pads', 'cleaning up', changing bed sheets, perhaps two or three times of a night, aggression, being told that you 'do nothing to help me' when you actually devote 24 hours a day purely to care for a single being, a loved one. And yes, folk outside have no notion whatsoever as to the reality of what takes place inside those four walls.

    But 'Mr Nobody' remains in essence a very fundamental 'somebody' - else the outcome is disastrous. Dementia person alienates, distorts, controls and ravages the REAL person. And that REAL person remains, albeit hidden, perhaps for the greater part - but never totally. They are the victim and we as carer share that torment with them. See the dementia as the interloper and if you can combat it together, things change. Therein lies the challenge and it's a huge one.
     
  4. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,284
    Female
    South of the Border
    One of the first things that 'went' with my OH was his ability to empathise with anything that was happening with me, to me, about me - because this rotten illness takes that away.

    Your wife may not wish to have social services involved - but our SS, have said I am the client as much as OH- in fact more than him, as he does not acknowledge that dementia affects him.

    So, why not approach SS on your own behalf, and then if you are able to get respite of any kind, you can insist to your wife it was 'all their fault'.

    To be honest, if she is like my OH she will forget all the reasoning behind it anyway.

    You have to do something for yourself, for your own sanity, and to give you the strength to carry on - I understand from others on TP that there comes a time when you just 'tell' the PWD what is going to happen, and that is that........

    look after yourself
     
  5. marionq

    marionq Registered User

    Apr 24, 2013
    5,753
    Female
    Scotland
    When it becomes too much for you as it clearly has then the time has come to put help in place whether she likes it or not. If she rants and shouts then walk away until she quietens down. Each time she starts, walk away. Don't tolerate abuse.

    Get a needs assesment for her and a carers assessment for yourself. Phone SS today and tell them you can't cope on your own and urgently need help. We all need help eventually. For the first time in six years I have a carer come in four mornings a week to help with showering etc. I don't feel weak. In fact I feel pretty good that I've managed so far on my own. That's what you have done but now is time for a change.

    Good luck. Tell us how get on.
     
  6. mumsgone

    mumsgone Registered User

    Dec 23, 2015
    921
    the best thing you can do for your wife and yourself is get some help in situ. I agree with the others get onto the ss. does your wife receive attendance allowance? this is a non means tested benefit which would then allow you to get a care agency involved so that someone could be there with your wife while you popped to the shops or went out with the dog. You say your wife is nice to other people so perhaps introduce the carer as just someone you know. Above all you must look after yourself it is a long and arduous road you are walking and you need someone to help. bless you and your wife xx
     
  7. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Good advice being given here. I was in a similar place after 8 years of caring-and asked for a carer's assessment as I was so close to carer breakdown. I was lucky in that I got the most amazing social worker who told me that if I didn't plan ahead I could be looking at a crisis placement for OH one day-and I would have no control over where he went. Told me I need a five year plan...look for a home that offers day care and respite....which we did. OH thought he was going to 'his club' for day care-muttered a bit but enjoyed once he was there. His first respite stay was 'because I was ill' ( not that he got that.,,,) and he thought it was a hotel. It certainly wasn't easy...but it saved my sanity and what is left of our marriage.

    Social worker was right -we eventually hit a place where caring at home was no longer possible, both for his safety and that of the rest of the family. The home took him in after a desperate night time phone call -and he has now been there for two years. I did have a complete breakdown after he went in and I know he could not be at home now-it needs a team of carers on shifts to cope with him. But he's in a home 5 minutes from me where I can go in and out as I please. If I hadn't followed advice-he could be out of county ( often happens here as it's cheaper) or in a place he'd hate.

    I can now be his wife again and have some good times. We went on a boat trip last week ( with the home-I couldn't take him out alone as he runs away across roads and can be agressive) and it was lovely to see his smile. I still have guilt trips-but know it was the best thing for both of us.
    Good luck
    Sah
     
  8. Manc70

    Manc70 Registered User

    May 30, 2018
    119
    Female
    S. Yorkshire
    My heart goes out to you and wish I had the words to help. My OH is in a much earlier stage although there are traces of the behaviour you talk about that I recognise. I’m still unsure about our next step apart from him taking the medication and seeing the neurologist in 3 months (always 5 or 6 because of the waiting list) to see how he’s getting on with it, so I find all the advice given interesting and helpful
     
  9. malomm

    malomm Registered User

    Enough is never enough. Take all the help you can get, whether your wife likes it or not is irrelevant. She doesn't have the capacity to understand either her own needs or yours.
    You have become the whipping post for all the frustrations she feels as this disease takes over her persona and she doesn't and can't understand why.
    Take everything your wonderful social services and other organisations can offer.
    As others have pointed out, if you don't take care of yourself, who will take care of her?
    Get quetipiana and memantime prescribed for her, this will help keep the aggression under control hopefully.
    I know only too well it ain't easy, but try and stay positive.
    My thoughts are with you.
    malomm.
    This translates as 'the baddy' and that's what I am to my misiss after 57 years of marriage.
     
  10. Macduff

    Macduff Registered User

    Feb 16, 2018
    48
    Male
    West Sussex
    Thank you so much for all your responses. They really help and make you feel that you are not alone. I guess I take the hits too personally and I must identify that dementia is the enemy not the person. I'll work on that.

    I have been talking with SS for months and they have been great. We have had a needs assessment, a carers assessment and event the financial review for my wife. Funding is available. The problem is she refuses all offers of help and is quite aggressive about it. 'I'm not having anyone in and no one is going to touch me'. Right now we are trying a befriending approach and hope that if a relationship develops it might result in help being accepted.

    We tried respite but it was a complete disaster. My wife still has capacity and so it's not easy to negotiate these things. As you suggest we aim to look at day care.

    Thanks again for your support
     

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