I fear this is unsustainable - has anyone considered using a home care agency?

Discussion in 'I care for a person with dementia' started by Charles310392, Nov 3, 2015.

  1. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Hi all,

    Myself and my family currently look after my two grandparents at our home. They both have Alzheimer's, granny more severe than grandpa, and it is becoming really difficult to continue looking after them properly even by rotating between us and sharing the load. We are all getting incredibly tired, sometimes frustrated, regularly emotional and I suspect could benefit enormously from having a break.

    For as long as I can remember they have both always said "when I get old, the last thing I want is to be put into a care home" so are very reluctant to even talk about it. Has anyone considered arranging a home care agency to come in a few times a day to provide a bit or a break? What are the pros and cons?

    Thanks a lot in advance.

    Charles
     
  2. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    First of all have you had a carer's assessment, and do you have a social worker?
    You can have carers coming in to help and that might very well ease the burden for you all, but have you considered day care?
    My dad had a combination of both for mum, it meant he could get out of the house occasionally on his own, which saved his sanity. In the end when mum could no longer walk she had to go to a care home as things were completely unmanageable. She had no involvement in this decision and the prospect of it was never discussed with it either as she had no insight into her illness.
    She also went for regular respite at a care home which she would never have agreed to either, we never discussed it with her, but it enabled my dad to carry on because he had regular breaks.
    That sounds heartless, but the problem was that mum had no idea that she was anything other than her fully normal self as she had always been.
     
  3. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Hi Charles and welcome to TP :)

    I fear that I have to raise the unedifying subject of money. Would your grandparents be self-funding, that is, do they have more than £23,250 in savings each, or a property that could be sold? If they are self funding, in some ways that's easier because you don't have to involve social services in their care, unless you want to.

    Secondly, does anyone hold power of attorney for them? That is, does anyone have the authority to access their funds? Or take part in health and welfare decisions? If not, you should consider whether they have capacity to grant power of attorney to anyone. If they do, get it done as soon as possible, it will save a lot of problems down the track!

    Moving on to the care issues, have they had needs assessments done by a social worker? Are you in touch with the Alzheimer's Society or do they go to a memory clinic? It sounds as though you could benefit from talking with someone about local services and facilities.

    It sounds to me as though you could do with quite a lot of help. You have all done amazingly but the time may be near when you can't care for your grandparents without outside help.

    Please do contact a local agency and start the process of getting some support :)

    I wish you all the best :)

    Lindy xx
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Whatever their income they would both be entitled to Attendance Allowance and probably the higher night time rate too.
    I agree you should have a carers assessment.
    I do know a couple of people in similar situation with both parents suffering from dementia who have a live in agency carer and it has worked really well for all of them .but this is only an option if they are self funding as social services will not usually fund live in carers
     
  5. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Thanks for the reply sistermillicent.

    We are considering day care, yes. The only concern is that they both seem to get very disoriented when they spend significant periods outside of the home environment and find it quite distressing. They also find groups of people quite intimidating and prefer to spend time with a small number of people they know closely, which we thought might be easier with care at home.

    Did your mum cope okay once you made the decision to start the respite care, and later full-time care in a care home?
     
  6. Cinder

    Cinder Registered User

    Dec 14, 2014
    66
    We have carers coming in to help with MIL. First agency was pants, second is really good so far.
    You have to monitor them, but if the money's there it's a great help.
    x


    Sent from my iPhone using Talking Point
     
  7. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    Mum was absolutely livid with me when we dropped her off for her first respite but she was charm itself with the carers there and settled in well, a bit of getting out of bed at night was common for the first two or three nights every time she went but she settled back in at home straight away on her returns.
    Her mind deteriorated of course and at some point in that first year she had no objections at all or apparently awareness of where she was . The respite continued for about 4 years regularly then earlier this year she became unable to stand or walk and was admitted to the care home permanently in an emergency situation, quite unaware of it I think. She is very comfy there and has all sorts of care and attention that we were unable to give her at home. She actually seems happier in herself though she doesn't communicate any more, her face is less pained.
     
  8. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Hi Lindy and thanks for your reply.

    My grandparents would be self-funding, yes, and PoA has been sorted.

    They haven't had needs assessments done but have both been in regular contact with a memory clinic. They haven't really been big on pointing us towards available services though so I will speak to Alzheimer's Society directly, thanks.

    Having spoken to a few family friends it seems that agencies vary widely in terms of their staff, training, standards etc. How did you go about making a decision on which one to go with?

    Rowan
     
  9. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Thanks for your reply fizzie.

    They are self funding so we will definitely look into agencies that can provide live-in carers :).
     
  10. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Well done for persevering, it sounds like it was a good thing in the end but must have been very hard to experience at the time.

    Do you think her mind would have deteriorated in the same way if she was still at home with a care package?
     
  11. Charles310392

    Charles310392 Registered User

    Nov 2, 2015
    8
    London
    Thanks for replying Cinder. If you don't mind me asking what happened with the first agency?

    Rowan
     
  12. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    Charles
    If I were you I would start a thread asking about live in carers on here, people have so much experience and someone might be able to recommend a good agency to start off with.
    Also when you do narrow it down to a couple of agencies check out the CQC reports on them before making any decisions
    That is of course if you decide to go down that route. I have heard that for 2 people it is a cheaper option than a care home as well
     

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