What is the best way to support

Discussion in 'I care for a person with dementia' started by Xylia, Nov 2, 2015.

  1. Xylia

    Xylia Registered User

    Nov 2, 2015
    5
    Exeter
    Hi All - I'm brand new to this forum. My step father (67) has moderate and quickly progressing AZ. He is cared for at home by my mum and he now can't really be left alone over night although she does work in the day and there is a teenage son who's also struggling with the demands of care/grieving for a ill father. I live in the same city but have a physical disability so can't help nearly as much as I'd like.

    My big concern is that my mum is so stressed that I feel that she is at risk of a nervous breakdown/stroke. She is managing a difficult job, a really complex situation at home, an emotionally vulnerable teenage son and my difficulties (although I try to minimise these as much as possible). Some of my step father's family live locally but don't seem to want to help (their father also died of AZ so maybe emotionally tough for them). Mum has considered CHs but she doesn't want to 'put him with old people'.

    Her mum died yesterday in Wales and he is really struggling being there, and her caring for him means that she is having no time to grieve, plan, sort or anything else. She is in desperate need of some respite. I would welcome any suggestions because if she breaks the whole family will too. Thanks
     
  2. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,094
    Yorkshire
    Welcome to TP Xylia :)
    My goodness, your mother is a trooper isn't she. She must be so torn right now, and clearly not feeling able to put herself first for a while. My condolences to you both.
    Do I gather that she and her husband are not at home right now; that they have both gone to Wales? If so, it makes it tricky for you to sit her down and talk. Is it possible to talk to any of her relatives there and ask if they can help with her husband so that she can see to arrangements for her mother? Or even the other way round; take the key role in funeral arrangements so that your mother is present but with no extra pressures on her?
    To the both of us it is obvious that she needs to clear some space to breathe, and that means at least finding a respite place for her husband, if not right now certainly very soon.
    Is your relationship such that you can sit her down and ask her for your sake to do this as you are so very worried about her - at times my parents were relieved to be given permission to do something for themselves because I needed them to (at others they just couldn't let go). You know best how she will react - but personally I'd be sorely tempted to be pretty blunt with her.
    Mind you, she will then have to get on to Social Services to organise the respite. Is there any way you can contact their GP and SS to let them know how worried you are and ask them to be prepared to organise support when she contacts them?
    And in the long run, some day care may give her a break and allow her to see that care outside the home is not the awful alternative we can tend to believe. Does she have carers come in to help her?
    Keep posting: let us know how things go.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,814
    Female
    South coast
    Hello Xylia
    Your mum sounds at the end of her tether and carers breakdown can be a real thing.
    What your mum needs is some respite. This can either take the form of day-care, or residential care in a care home for a few days up to a couple of weeks (sometimes even more) I know that your mum doesnt want to do this, but if she has carers breakdown, or becomes ill there will be no option but for him to go into a care home. Im sorry if that sounds harsh, but it is the truth.

    Try and encourage your mum to call Adult Services (formaly Social Services) and ask for an assessment, or you could do it if she wont - and stress that this is urgent.
     
  4. Xylia

    Xylia Registered User

    Nov 2, 2015
    5
    Exeter
    Thanks Shedrech - apologies if I do this wrong as I'm new to the forum and how things post. I am fairly blunt with her and I think she has a carers assessment last week but what with the rush to Wales I haven't had a chance to speak to her about it yet. She doesn't have carers in but he goes out for lots of activities with Age Uk and the like. His care needs are more of the cooking/not sleeping and wandering off variety and more in the evening/night time. I think she needs to consider respite care but she's resistant to this. I think he'll be self funding, although they haven't had that assessment yet as she wants some work to be completed on the house before this.
     
  5. Xylia

    Xylia Registered User

    Nov 2, 2015
    5
    Exeter
    Thanks Canary - I'm trying to be gently blunt but also don't want to stress her even more, and now that's she's grieving I don't feel I can be that demanding of her. I'm sure her family in Wales is rallying around to support the best they can but it's his family that need to be helping more in my opinion. My mum is bad at asking for help though.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,094
    Yorkshire
    #6 Shedrech, Nov 2, 2015
    Last edited: Nov 2, 2015
    So glad you can discuss things with your mum - it does mean that she hears another view from her own (even if she disagrees at the moment) and can slowly come to see the sense in it - hopefully.
    Do mention that if she has the assessments before doing the work, it may be that some things can be done by the LA for free, or be partly funded. Certainly dad was helped out after OT visits with grabrails and they put in sensors linked to a carephone system so that if he opened the front door at night he was called and spoken to and they let me know. Or is she using the work as an excuse not to reach out for help? It's hard for an independent woman to let others in to help - yet we've all paid our dues and have a right to assistance.
    I hope she has arranged Attendance Allowance, I know it's money not help but it can be used towards respite when she does realise it's necessary, or maybe a sitter over the odd night to let her get some rest.
    Would she come to TP and read some of the threads about respite and how much it has helped some carers? There's even one at the moment about how hard it is to actually take this step - she may feel easier in herself knowing there are others in the same situation.
    You are posting just fine :)
     
  7. Xylia

    Xylia Registered User

    Nov 2, 2015
    5
    Exeter
    She does have attendance allowance thankfully but currently doesn't want to come to the forum because she doesn't want to acknowledge yet how bad it might get (particulary on the personal care side)
     
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,094
    Yorkshire
    Oh Xylia, I do understand. She's lucky she has such a thoughtful daughter watching out for her. She knows you'll be there when the time comes. And TP is here for both of you when needed.
     

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