Need advice on assessments

Discussion in 'I care for a person with dementia' started by sinkhole, Jan 11, 2016.

  1. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    My mother lives in her own house over an hour from where I live. She is 90 and is virtually house bound with some mobility problems and other health issues.

    Her sister, who is 87 and has late stage dementia, recently moved out of her own house when it was burgled and now seems to have settled at my mum's house with no signs of wanting to go back home (which is a good thing, as it was squalid). Understandably, my mother isn't coping very well but has refused any help up to now, other than me visiting and doing some shopping once or twice a week.

    After another mini-crisis with her sister today, she seems to have finally caved in and has agreed to me bringing someone in to discuss the situation and offer advice and support.

    It seems there are several options when it comes to who could carry out a care assessment for them. Do they each need a separate assessment? Who would be best to contact first?
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    Hi, sinkhole, I have seen some of your posts and just wanted to make sure you got a reply. As I'm not in the UK and have an imperfect understanding of the system, I am not the one to advise you about who best to call first, et cetera, but know that someone here who does know, will respond. (I'm guessing both your aunt and mother need a carers assessment ASAP, but again, don't take my word for it.)

    It sounds a very tricky situation all round and I just wanted to encourage you that it is more than reasonable, to get help. When you look at it on paper, how realistic is it to expect a 90 year old, with health and mobility issues of her own, to be the full time, hands-on, 24/7 carer for someone with dementia, both now and going forward? I would be concerned about lifting, bathing, dealing with incontinence, and similar physical issues, never mind the behavioural issues which are challenging enough in and of themselves.

    I know you know all this, and am not saying it to belittle you, just to provide you with another way of looking at the situation, and something that you might say to Social Services/Age UK/the GP/whomever it is you contact. I believe one of the pertinent phrases is "vulnerable adult at risk." I also think that you will have to be clear about what you can and cannot do, in terms of support, as you do not live nearby.

    While it's not easy, the alternative is to wait for the crisis, so I do think it's smart to try to think ahead and plan. Surely your mother could use some practical assistance (shopping, errands, cleaning, meals, work around the house and garden) and there may well be resources in the area that would be helpful to know about. So good for you.

    Does anyone have PoA for your aunt? Are there other family members "helping," or are you it?
     
  3. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
  4. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Hi Amy, thanks for the reply.

    Yes, to anyone apart from my mother, it seems like a ridiculous situation, but they have both lived on their own for many years and have always been very independent and unwilling to accept any help offered.

    I'm a (male) only child and it's just the three of us left in our family, so the buck stops with me and while I've done a fair bit of work recently getting both their houses and gardens in order, sorting out their finances, increasing levels of safety and security, I can't see how I can provide the care they need going forward.

    I've got both types of LPAs for both of them and I've already dealt with Social Services, GP, Memory Clinic etc. but it's been a real struggle to get them to accept the changes and intervention all this requires.

    I've had numerous conversations with people about the situation and we all know what needs to happen, but the sticking point is my mother and her sister being so uncooperative and determined to do everything themselves.

    I do also know that sometimes a crisis is often the catalyst for change and I'm prepared for that if it comes to it. In the meantime, like you say, I'm just going to plan for it and keep drip feeding them the thought of outside help and carers in the hope they will accept it.
     
  5. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    They are in different LAs but that's something I'm going to have to overcome one way or another.

    How would an Age UK carer's assessment differ from a LA one?
     
  6. fizzie

    fizzie Registered User

    Jul 20, 2011
    2,740
    I would contact Age Uk and talk to them - they will a)help and b) advise you and meet with you too probably which will save you a lot of problems They are very good at practical help
    the number is
    0800 169 2081

    Now below is a list of the things that I would give to people to look at/consider as well or as part of the above (a day centre for your aunt may be a very good idea but might take some persuasion!)

    You can phone Social Services Adult Care Duty Desk and ask for an assessment if there have been no recommendations from the Unit - services like carers visiting to help with the daily routine/personal care or day care that should be an option - a day centre where they have lunch and activities. As well as our social services centre we also have Crossroads Day Centre where people can go for up to 3 days

    It is worth googling Dementia activities + your area to see what is going on. There is probably a fair bit but you need to search for it. Some care homes also do 'day care' which can be useful but I would try the day centres first

    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it
    http://www.ocagingservicescollaborat...y-Impaired.pdf


    You can also ask for a carers assessment - this will give you a break and give your mum (as she is essentially caring for your aunt) some 'free' hours of help possibly. it might seem early days to be thinking of a 'break' but a few hours here and there is a good idea from as early on as you can.

    If your mum is not already getting it (or disability living allowance) then she should be but your aunt needs this in her own right too - do apply for Attendance Allowance - the forms are a bit tricky in that you have to imagine the worst possible day and write down the help that is needed (not the help that they get at the moment but what would be ideal for what they NEED). Attendance Allowance is not means tested and you should get it, if you need some help with the forms come back and ask Age UK are really good at helping with assessing what benefits you can claim and then they also help you fill in the forms - someone will come to your house.

    It might be worth your mum joining the local carers organisation - they usually have a carers cafe (and so do Alzheimers society in some areas) and it is worth a morning off to go and find out what help there is in your area over a cup of coffee - lots of friendship and support face to face and everyone in the same boat.

    If there are issues with incontinence all areas have a continence service - you will need to look up your Trust or google your area plus Continence Service. The continence nurses we have had have been wonderful and pads are supplied free by the NHS.


    The Dementia helpline is a useful number to have

    Alzheimer's Society National Dementia Helpline 0300 222 1122 can provide information, support, guidance and signposting to other appropriate organisations.

    The Helpline is usually open from:
    9am - 8pm Monday to Wednesday
    9am - 5pm on Thursday and Friday
    10am - 4pm on Saturday and Sunday

    That's it lol. good luck and keep posting x
     
  7. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,624
    USA
    I'm glad you got a response from Nitram and hope you'll get further clarification on the assessments.

    I somehow suspected you were it in terms of family. For what it's worth, I am also an only child (as is my mother) so I go it alone with her care, although I do have support from my amazing husband. There is a childless aunt on the other side of the family, with mental and physical health issues, and I will be first in line (and possibly last) to deal with her, if and when something happens to her current carer (my other aunt, her sister). I get a lot of sympathetic noises about the only child situation (poor you, bet you wish you had brothers and sisters to help you) but it's not as if I can do anything about it. Also, interestingly enough, I've been an only child all my life and so long ago came to terms with the idea that it's just me. My husband, on the other hand, is one of five children and I dread the day that we have to deal with a crisis with one of his parents; one of the siblings is semi-estranged and all five of them together couldn't decide on what to put on a pizza, let alone make emotionally wrought health care decisions.

    But I digress; for which, my apologies.

    I did try not to sound judgmental and say that the situation is ridiculous; I do not wish to be offensive. Certainly your mother is hardly the only older adult to wish to be independent, not accept help, not want to embrace change, et cetera. Any amount of time on TP and/or in carers' support groups has taught me that, as has the experience with my mother.

    Having said that, and for what it's worth, no, the current situation can't continue indefinitely, as you note. Something has to change and/or you will have to wait for the crisis.

    Here are some strategies I've seen outlined here on TP, and heard elsewhere, in terms of persuading reluctant family members to accept help:

    -first, always be aware of not just the message, but the messenger. I had a brilliant carers' workshop where we were taught this very thing. Unfortunately, the adult child is almost always the worst messenger. If you can get someone else to deliver the message, do so. Suggestions include: other family member (clearly not going to happen in your case), health care worker, social worker, doctor, clergy person, neighbor, basically anybody but you.

    -if that won't work, and even if it does, remember to shift blame wherever possible. I find blaming the doctor or hospital works best (Mother, I know you don't want to go to that appointment; however, the doctor says you must) but your experience may vary.

    -as your mother is not the one with dementia, consider a personal appeal. Tell her you understand she doesn't want help/a cleaner/strangers in the house, but that you live far away and can't do it all yourself, and it will help you if she will accept them coming in. Sometimes a parent will be willing to do something they don't want to, if it's framed as helping their adult child, rather than themselves. Some people find this approach can even work with the PWD (person with dementia), but of course it's impossible to predict.

    -some PWD will accept outside help and "strangers" coming in, if they are framed in a different way. Approaches I've read about here include: this is my friend Mary, mum, and then in an aside, she needs the extra money dreadfully, Mum, so if you'd just let her work here a few hours a week it would really be a kindness; this is a free trial service from the council/NHS/church/community centre; this is a student who needs experience to get her degree/certificate so could you please help her out.

    No idea if any of that will work, but thought I'd put it out there.

    I'm very relieved to hear you have Power of Attorney sorted. Here in the States, you can't get anything done without it (and often seems you can't, even with it!).

    It also sounds like you've done a lot of work already. As someone who was formerly a long-distance carer, it's an awful job under any circumstances and the distance makes it that much harder, and puts a lot of miles on the car!

    I'm just so sorry about the difficult circumstances. If you're inclined, I hope you will keep us posted, please.
     
  8. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    "How would an Age UK carer's assessment differ from a LA one?"

    There are two carers' assessments.

    Carers's allowance by by the DWP, Age UK will help with this and the LA should also help.

    Carers' assessment under the Care Act, only the LA can do this. It is help for the carer to have some respite from caring, it can be a variety of things including a free sitting service (no personal care) for the caree to allow the carer some 'me time'.
     
  9. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Ah OK I understand now, thanks. I've already sorted the carers allowances out so I'll get on to the LAs and organise the assessments ASAP.

    Amy, fizzie, Thanks for all the suggestions, that's all really useful help.
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    #10 nitram, Jan 11, 2016
    Last edited: Jan 11, 2016
    Just realised the DWP carers's allowance will probably be precluded because of receipt of pension , max £110/wk income after taxes.

    Different tack, have a look at >>>attendance allowance<<<

    If you don't ask you will never get.
     
  11. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    I looked into this for my mum a couple of months ago. Apparently, she already sorted out the allowance a while ago before I started managing her finances and I checked with DWP that she's getting the full entitlement, so I'm pretty sure she's getting all the benefits she's entitled to. I think it is attendance rather than carer's, as you say.

    It's not exactly an easy system to understand though...

    Also just spoke to aunt's LA about transferring her over to mum's and the GP registration seems to be the key, so I'll get that done in the next few days and then talk to SS about getting an assessment done.
     
  12. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    Has your mother got SMI disregard on her council tax?
     
  13. Boldredrosie

    Boldredrosie Registered User

    Mar 13, 2012
    237
    They differ because Age UK is helpful and actually advocates for the elderly and their carers. Local authorities, in my now growing experience, are not helpful and do not care. Age UK will provide you with information and, if need be, an advocate to speak up for your needs.
     
  14. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    "It's not exactly an easy system to understand though..."

    And as you get deeper into it you might find that it is not a unique system but multiple systems who don't talk to each other!!!
     
  15. sleepless

    sleepless Registered User

    Feb 19, 2010
    3,232
    Female
    The Sweet North
    Carers' assessments are sometimes contracted out, or were when I had mine. It was done by the local Carers' Association.
    I wonder if Age UK carry them out in some areas?
     
  16. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    "I wonder if Age UK carry them out in some areas?"

    Good point, as has been said:-

    It's not exactly an easy system to understand
     
  17. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269

    Well, she's been discounted to zero, but I don't know if that's why. I'm just about to update the benefits office on her income, which hasn't changed much in the last couple of years, so I'm assuming it will stay at zero, but I'll bear that in mind if they query it.
     
  18. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    #18 nitram, Jan 11, 2016
    Last edited: Jan 11, 2016
    SMI disregard is nothing to do with income, it relies on a certificate signed by a doctor and eligibility for qualifying benefit.

    Is sister going to be 'resident' or 'just visiting'?
     
  19. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    269
    Not sure about the disregard but I can check.

    I think we've got to the stage now where sister is going to be resident for a while, hence I'm registering her at my mum's GP practice this week. I guess that means benefits/council tax etc. could change?

    Are the relevant departments made aware once she's registered with the new GP, or do I have to inform various people about the new situation?
     
  20. nitram

    nitram Registered User

    Apr 6, 2011
    18,288
    Male
    North Manchester
    "...do I have to inform various people about the new situation?"

    Best to assume that they work autonomously.

    To register with a GP the person probably has to live within a specified area, but I don't know what 'live within' means in this context.
     

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.