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.

  1. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    I've been lucky enough to get a carers break paid through my Carers Assessment for the last 2 years and will hopefully get a grant again this year for £300. They don't mind how you spend it and so I have opted for cheap accommodation but eeked it out so my break lasts for 10 days and costs next to nothing as I would be spending on food and petrol anyway.
    Last year I was fortunate in that Dad was being CHC funded for the best part of my 10 day break but the funding finished and he does not qualify in their eyes.
    dad has deteriorated and I am uncertain if I could leave him overnight with confidence. I think it would be ok if he had early morning plus late eve visits as I have confidence in his current agency. If he has to have meals delivered plus 3 vists a day , I can see the cost of the care bill approaching 10 x 3 x £23 plus meals 10 x £10 approaching £800. This is making my "free" holiday seem somewhat expensive and wondering if I should cancel.

    There is no way in a million years Dad would "go into respite".

    What would you do?
     
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    My personal view is that you have answered your own question in a way when you say "I am uncertain if ....."

    If someone has significant Alzheimers there is no way I would consider leaving them for long periods or on 3 visits a day - I would think that you might be worried sick which would spoil the holiday anyway.

    Having said all that I may be speaking out of turn - what alerted to me that his needs are high level was the fact that he received CHC funding at all - they don't usually fund unless needs are really severe. Feel free to ignore me if I am misinterpreting
     
  3. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Fizzie
    No thanks for taking the trouble to reply. I am finding the dementia a new thing to deal with. In the last month especially Dad has been getting confused about time, asking for breakfast at bed time and asking 4 times yesterday if I am going to work/ back from work etc when I had a day off. He stays out of mischief by sitting in his chair all day.
    CHC was granted while he was being assessed but declined after the MDT meeting. It all took a while pending nurse reports. Dad has visits by District Nurse every 2 days for dressings. If I had 3 visits a day , he would have these 3 visits plus meal delivery visit plus D/N every other day plus family visits 3 or 4 brief times while I was away so he wouldn't be abandoned. He also has lifeline.
    His dementia is not as bad as some people's, and I don't think he would either wander or try any cooking, or have any continents issues.
    If I went, I am really quite good at switching off from thinking care.
     
  4. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    I see. If he has a time issue then that may cause a real problem and if you are not there he is going to be more likely to wander - if only because he will be missing you and want to know where you are. With any kind of memroy loss he won't retain the information that you are only having a break.

    I'm just wondering - have you access to all the things that you are/might be entitled to? A carers assessment to give you some sitting hours? Attendance allowance?

    would it be worth giving Social Services a ring and seeing if you can get some respite so that your Dad could just have a temporary break in a care home?

    would family just come and sleep at night to give you a break?

    You've probably thought of all these things but I know from my Ma who was not a wanderer - when she missed me she did wander and the early hours of the morning and late hours at night are scary times for people on their own.

    Take care
     
  5. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Fizzie
    Thanks for the ideas. Yes Dad is getting Attendance Allowance and yeas we have had Carers assessment and needs assessments. Perhaps you have a good idea about the sitting service- I know I have entitlement to some but have never used the service because dad does not want anyone "sitting" or chatting to him.
    I don't think he would ever be persuaded into respite in a million years. I doubt that the council would fund any of this anyway as he is self funding and when I rang around the local nursing homes they mostly will only do 2 week block bookings so would be 2 weeks for ten days and costing about £3,000 for the fortnight down here so again not much of a "free holiday". I really feel like I need the break .
    No way in a million million years family would think of staying. They pop by once every 4 weeks for a cup of tea.
    Dad shows no signs of missing me when I am out. He sleeps nearly all the time when I am here or watches rubbish tv. Not really mobile enough for wandering.
     
  6. Sarah4uk

    Sarah4uk Registered User

    Dec 17, 2015
    9
    I know it's not ideal, but could you go away for a couple of long weekends?
    Frankly a spa break might do you wonders (I'd frigging KILL for someone pampering me for 10 minutes!)
    My oldies are self funding too, and as there's a pair, nursing home for 2 weeks would be more than my holiday!!!


    Sent from my iPad using Talking Point
     
  7. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Sarah
    I guess that would be an option but I'd need to go away with my dog or I will have dog sitting fees to add on to the overall cost, plus I'd be really miserable leaving her behind and going on my own.
    I booked my ten days last year when I did the same holiday so already pencilled it in . I just need to book leave with work.
    Have you managed a short break at all Sarah?
     
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    you could also ask SS if there is a possibility of a day centre. I'm guessing from what you are saying that he has capacity to make decisions himself - when the assessed his Alzheimers they didn't say that he didn't have capacity?
     
  9. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    937
    Hi Fizzy
    Yes I would say Dad still has capacity but I think there is as much chance of Dad going to a day centre as catching a ride on a large flying pig for a day trip to the moon:) It is really not his thing- he would truly hate it.
     
  10. mrjelly

    mrjelly Registered User

    Jul 23, 2012
    317
    West Sussex
    By your calculations your Dad would need to spend about £80 a day on his care when you are not there. This may seem like a lot, but if you look at it another way then that is what you are saving him by looking after him yourself.

    Over a year that would add up to saving about £29,000, so against that it might not feel so bad to spend a few hundreds or even thousands of pounds of his money if that gives you the break you need to carry on caring according to his wishes for the rest of the year.

    If your relatives don't like it then they always have the option of stepping in themselves!
     
  11. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Yes I think that is a good point - it might be money well spent.
    Of course without having met him it is very difficult to comment but I would have deep concerns about the safety of leaving someone with Alzheimers alone with only carers when - and this is the key - that is not what they are used to - I believe it triggers all sorts of behaviours because their memory is not intact.
     
  12. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    847
    You say you are still at work so presumably Dad's care is covered during the day and working out OK.So you need overnight care when you go away?There are agencies who can provide this cover,at a cost obviously but I really believe it's important that you have your holiday.Your holiday will still be free,it's your Dad's care that will have to be paid for.I would also start considering the idea of day centres and respite for the future.Your Dad might not want or like the idea,I doubt if anyone does but quite franklywe all have to do things we would rather not.The alternative is that you become a virtual prisoner and I don't suppose that's what you want either.You matter as much as you Dad,don't forget that.
     
  13. notsogooddtr

    notsogooddtr Registered User

    Jul 2, 2011
    847
    You say you are still at work so presumably Dad's care is covered during the day and working out OK.So you need overnight care when you go away?There are polo agencies who can provide this cover,at a cost obviously but I really believe it's important that you have your holiday.Your holiday will still be free,it's your Dad's care that will have to be paid for.I would also start considering the idea of day centres and respite for the future.Your Dad might not want or like the idea,I doubt if anyone does but quite franklywe all have to do things we would rather not.The alternative is that you become a virtual prisoner and I don't suppose that's what you want either.You matter as much as you Dad,don't forget that.
     
  14. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Can I pipe up about day care.
    My dad has always been a loner, was ok with other people but never comfortable with mixing with others really, much happier doing his own thing. When it came to it we had to force our mum to come with us for a look around the centre as in her opinion, it was full of old people and no way would my dad like that. This was a pre formed idea of what day care was. Anyway when she had been there were activities for all types of personality. She said she wouldn't mind going herself as it looked fun. My dad went and doesn't say much about it and makes excuses not to interrupt his usual routine of sitting around doing nothing.... BUT when he comes back he is tired and very happy. He can't remember what he has done but he says they are all very nice there and they look after him. This is from someone who to be honest we all thought wouldn't like it or go.
     
  15. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,739
    Susy my ma was the same -very resistant but by the end of her life it was her second home x
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.