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Parents still living at home. What other help is available?

Discussion in 'Middle - later stages of dementia' started by Difficultdays, Mar 3, 2015.

  1. Difficultdays

    Difficultdays Registered User

    Mar 3, 2015
    4
    I am new to this, but am floundering a little and am sure some of you might be able to help. Both my parents have late stage dementia and are still living at home (and it's now way too late to try and move them). My mother has had dementia for over ten years and has been bed-bound for over three. My father was diagnosed a year ago or so but has gone downhill fast in the last month or so. He is now, just recently, at the stage where he can only just walk, even with a frame (although we are hoping that is due to an infection). He is very frail and weak but also very determined. We now have 24 hour care.

    We are self-funding and the cost of all this is eye-watering. Just in the last week we have had to introduce night-time 'sleepers', although I imagine this will become night-time 'carers' as my dad had the carer up at 2am trying to go for a walk around the bedroom.

    We have a private carer (amazing) between 9-5 Mon-Fri then an agency carer and night sleeper between 5pm and 9pm and all the time at weekends. I know we receive attendance allowance for my mum, and have done for a while, but as my dad has gone down hill so fast and was on top of all this until recently, I would like some advice about if there is anything else we can claim as self-funders? Assume I should now apply for attendance allowance for him, probably at the higher rate, but is there anything else? We are paying out tens of thousands of pounds and want to claim for anything my mum and dad are entitled to. I read about Admiral Nurses on this site and think it could be a great helpline for our fabulous carer to use as I know she suffers from dealing with them alone for much of the time, although we have extra carers calling three times a day to help with my mum (and now my dad). There are also lots of people/friends coming and going. I am an only child and live quite a long way away but spend a day there every week.

    Any help and advice gratefully received. Sorry for long post.
     
  2. Beate

    Beate Registered User

    May 21, 2014
    11,714
    Female
    London
    #2 Beate, Mar 3, 2015
    Last edited: Mar 3, 2015
    Definitely apply for Attendance Allowance!

    Also, both your parents individually qualify for council tax reduction (for severe mental impairment), and if it's just the two of them living together, it should mean a total exemption. Contact the council for a form.

    Would a care home for them both work out dearer financially or not?
     
  3. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    There is a nursing care allowance for people who need nursing, I think it is something over £100 per week. I don't know the ins and outs of it but someone on here will.
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,783
    Salford
    It does sound like the time is coming when you may need to look at full time care in a home and how you can do this and keep them together. The other question then is do you move them closer to you or do you leave them where they are so their friends can visit them (it's nice to hear people/friends still visit all too often they don't)?
    This would I guess enable you to sell their house and fund the care that way. I can't think how much the level of care you're providing for them is costing you but it must be worth looking into as it may take some time to make decisions, find somewhere suitable that you like and for places to become available.
    If you do want to keep them in their own home then there really is very little other than Admiral nurses, agencies or hiring someone yourself.
    You could get an assessment done by the social services and they would advise you of any benefits but all of the information is on here and if it looks like you'll be self funding for a long time then it probably isn't worth the intrusion.
    K
     
  5. Difficultdays

    Difficultdays Registered User

    Mar 3, 2015
    4
    Thanks all very much for this advice and help. I would move them but my dad is so determined to stay where they have lived for almost 50 years. I really think a move would kill them both. Mentally he is so strong and so stubborn. It's an ancient rickety house and to be honest the carer is not sure we would even be able to get my mum down the stairs as she is in one of those huge hospital beds and has not been able to use her limbs for years. I think we are stuck. It is also full of uneven floors, etc., so a death trap.

    We have an OT coming tomorrow to advise us about extra things that might help so that's something.

    I am going to phone and find out about allowances and will ask about the nursing allowance but am not hopeful.

    Thanks again.
     
  6. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    #6 nitram, Mar 3, 2015
    Last edited: Mar 3, 2015
    "...There is a nursing care allowance for people who need nursing..."

    I think you are referring to FNC (Funded Nursing Care), this only applies if the person is in residential care and is paid direct to the home to offset the cost of having a nurse on duty.

    "You could get an assessment done by the social services and they would advise you of any benefits but all of the information is on here and if it looks like you'll be self funding for a long time then it probably isn't worth the intrusion."

    Their is an advantage to self funders in being assessed for care needs by the LA.
    From April 2016 the LA will record the cost of any assessed needs, residential or at home, and set it against both the annual and lifetime care cost caps. The figures used will be the LA assessment of the service not the actual amount paid for the service.

    Does anybody have power of attorney for either of your parents?
     
  7. Difficultdays

    Difficultdays Registered User

    Mar 3, 2015
    4
    Thanks Nitram. Hate to think where we'll be by April 2016. But that is really handy to know about the assessment. We have paid so much more than the cap already - is it backdated when it comes in do you know?

    My dad has POA for my mum, and I have it over him but it's not registered yet as he is still of sound mind, mostly.
     
  8. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    I'm glad someone knows what they are talking about!

    Can you cut down the expense a bit by employing a carer for weekends rather than going through the agency or is this too difficult? I am sure you have thought of this.
     
  9. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
  10. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    "...I have it over him but it's not registered yet as he is still of sound mind, mostly...."

    If it's an LPA you can, and should, register it with the OPG now. You don't have to implement it's use.
     
  11. Difficultdays

    Difficultdays Registered User

    Mar 3, 2015
    4
    Thanks again. Nitrim - it is an enduring POA and apparently can't do it yet.
    Sister Millicent (you sound so lovely with that name!) - yes, just today - or rather last night when I couldn't sleep - I was thinking exactly that. To try and get someone for nights and weekends, leaving our fab carer to do her 9-5 and the agency to just do the doubling up where necessary and holiday/sickness cover.
    Thanks Beate for reminding me about Council Tax too. I know they already have a reduction for my mum, but will apply for more now my dad is so ill.
    This all takes up so much time and head-space - finding it hard to do my actual paid job at the same time!
     
  12. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    "Thanks Beate for reminding me about Council Tax too. I know they already have a reduction for my mum, but will apply for more now my dad is so ill."

    He would have to be in receipt of a 'qualifying benefit' , most likely AA, and a doctor sign that he is severely mentally impaired.
     
  13. Margaret79

    Margaret79 Registered User

    As I understand, and I could be wrong, your Dad could be claiming carers allowance for your Mum and if he gets AA awarded then she could claim carers for him. Anyone out there agree? Worth looking into.
     
  14. nitram

    nitram Registered User

    Apr 6, 2011
    19,035
    Male
    North Manchester
    "As I understand, and I could be wrong, your Dad could be claiming carers allowance for your Mum and if he gets AA awarded then she could claim carers for him. Anyone out there agree? Worth looking into."

    Basically true but receipt of DWP pensions of more than £100/Wk each would put them over the income limit.
     
  15. Margaret79

    Margaret79 Registered User

    I forgot about that Nitram. Good job someone is on the ball. :D:D

    I'll blame it on the fact that I'm so tired, MIL had me up 3 times between 2.30am and 6.45am so am not feeling my best :eek::D:eek:
     
  16. Jellybean8

    Jellybean8 Registered User

    Jan 12, 2015
    11
    Glasgow
    Denial

    My Mum has vascular dementia & Alz. My Dad is in complete denial about Mums increasingly worse condition. It is leading to a lot of family stress as my sister and I who dont live close to them are visiting freqently to help them out but Dad still refuses to acknowledge Mums condition. Mum is becoming increasingly difficult to manage - short term memory non-existent, becoming v confrontational and defensive and manipulative (which is not her personality). Have twice made social work referral and they have both refused to accept any help. CPN visits Mum once every 3 weeks but is pretty useless to be honest. Any words of wisdom?:(
     
  17. Miss Merlot

    Miss Merlot Registered User

    Oct 15, 2012
    3,262
    Hmmmm... Wondering if I know you on real life on the basis of this posting...?

    You are "I", I am "S", and we hold a friendship group (as well as dementia) in common...?
     

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