Discussion in 'I care for a person with dementia' started by Tubbsy, Nov 21, 2015.

  1. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    Two weeks ago we finally got my mum to agree to some help (with some persuasion from SS too) and so this last week she's had someone in the morning to get er breakfast and someone at lunchtime to make her lunch and something for dinner and to go out for a walk with her and her dog. Oh and a cleaner too :)

    Unfortunately, despite her denying anyone had been there at all this week, she's already telling anyone she gets to speak to that she doesn't want carers and doesn't need them!

    Anyway, my question is what should we (my brother and I) expect from the carers, my mum is entirely self funded so we are paying them with her money and I feel we should expect some feedback on how things are going. I phoned them yesterday and felt that I was being hurried on the phone and they didn't give much away but told me the things I should be doing eg getting er to change her clothes when that's one of the things we want them to deal with and they were told about by SS (who got this company in). I know it's only been a week and it will take time for progress to be made but am I right to think I should be kept in the loop?
  2. fizzie

    fizzie Registered User

    Jul 20, 2011
    yes you should be kept in the loop. If she is self funding you can change agency or do whatever you decide between you and her is best.
    I think it is a good idea to sit down with the agency and explain what you expect them to do ie - food, change of clothes, personal care etc etch.
    A good idea is to initiate a communication book so that you can leave messages for them - like 'her clothes were not changed today, is there a reason for that' or 'her hearing aid batteries were changed today' or whatever.
    You need to have a clear agreement with them and there should be two or three way communication.
    Some carers dash in and dash out and you don't know what they have done or even if they have stayed their time
    to be honest the agencies that SS use are not always the best ones to use but you can only find that out by talking to people locally = a useful way is to go along to a carers cafe locally and ask around.
    Do you have Power of Attorney? If so you should definitely be in the loop but most people would agree that family are key players in the well being of the person with memory loss so if the agency are difficult you would need to speak to social services
    scuse rambling!!!! do keep posting lots of people will chime in with other ideas x
  3. angelface

    angelface Registered User

    Oct 8, 2011
    They should be keeping a log book where they write up what is done on each visit.

    SS should give the carers a care plan for your mum, they should be sticking to that.

    I only used to contact the care office if problems occurred, but as you say,you need to keep a close eye on things.
  4. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    SS did write them a care plan and there is a communication book but nothing been written in it all week...something the woman from the head office simply wouldn't have when I told her yesterday! I've heard the agencies SS use aren't necessarily that good as they're caring for so may people, self funded and not but my brother and I were so desperate for help we just agreed to whatever SS would help us with. I guess time will tell. Thanks for the input :)
  5. fizzie

    fizzie Registered User

    Jul 20, 2011
    hmmmmmmmmmmm it is difficult to deny when the book is empty. Clearly the Agency has a problem communicating and realising that they are offering a service and that you have the right to demand a decent service

    I understand that you were desperate and this one is clearly filling a gap for now but .................. what you are looking for is
    Are the carers doing what you/she wants/needs them to do?
    Are they well trained and keeping her safe?
    Are they regular carers ie in a week does she have a small team of about 4 or 5 carers max who know her well (and who would know and report back to you if things were not quite right)
    Do they know that they must give you a ring if there are any falls or cause for concern?
    Do they stay the full time?
    Are they giving her medication - if not how is she remembering to take it and if they are, are they giving it to her safely and not missing doses.

    Those are the kinds of things you need to keep an eye on.

    Still would recommend you pop along to carers cafe and get some local info - can't beat it!!!
    keep posting, let us know how it goes - good luck xxx
  6. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    Ring some care agencies yourself, they should come and do their own assessment and in fact you can get some that also do the cleaning as part of their work. You should be at the assessment and you can get a feel for the company from the sort of questions they ask you about your mum. After the assessment you can always decide you didn't like them and not engage them.
    I would not touch any company that SS use with a barge pole. They will be rushed off their feet and will almost certainly not spend the time with your mum that they should.

    The difference for us between the SS company and the private company was that private company knew how to keep mum safe, where the fall risks were in the house, where the fuse box was, where the gas turned off. Dad would come home to find the house had been cleaned from top to bottom in the three hour he had been away, mum had been given tea and biscuits, the carer had often tried to do something with mum, card game or reading, but was by then beyond interaction, The SS company never asked about these things.
  7. Ann Mac

    Ann Mac Registered User

    Oct 17, 2013
    Just a tip - When Mil had carers, both whilst she was living in her own house, and then for a short while after she moved in here, I regularly photographed the pages in the record book. I'm not implying all agencies are like this, but having worked for 2 different ones myself, can I just say that sometimes, these log books can 'lose' pages awfully easily :rolleyes:
  8. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Tubbsy
    when dad had home care visits we'd agreed a care plan with the agency and a copy was in a folder on the kitchen top. It was longwinded and several pages, so I made up my own prompt sheet for each visit, printed those out and left them out. There was also a folder for their comments which was filled in every visit - though the month's sheets were taken at the end of each month (maybe one possible reason why there appeared to be no records written on your visit?).
    On each sheet I put detailed bullet points of what was to be done, in order, with a note of where things might be, and where I wanted them put eg clothes worn that day into laundry basket; clean clothes from wardrobe. I put how dad liked things done - and any helpful 'tricks' eg for his bedtime meds that they were to try first as he was sat in the lounge, then if he refused, back off and try again when he was settled in the bedroom.
    I felt a wee bit controlling but actually the carers liked it (especially any new ones) as they knew at a glance what was to be done - of course as they got to know dad and the routine they did their own tweaks but the tasks were done AND if not done a note was in the report book to explain why not and what they had tried.
    I also left my mobile number in large letters prominently on the fridge door, so had a few calls asking for advice - you may not welcome this, but I did as it sorted out the situation immediately - or I knew what I would be walking into when I visited.
    They definitely should be leaving a record of what is done on each visit. I was asked not to write on that record - so I left post-it notes stuck on - some of his regular carers even left me the odd note, very helpfully.
  9. Slugsta

    Slugsta Registered User

    As well as photographing the, blank, pages in the book, it might also be worth numbering them clearly. It is much more difficult to 'lose' pages when their absence would be obvious...
  10. Selinacroft

    Selinacroft Registered User

    Oct 10, 2015
    #10 Selinacroft, Nov 22, 2015
    Last edited: Nov 22, 2015
    I've had endless problems with dad's care agency, originally selected when he was CHC funded but now paying privately I have asked around for recommendations and have a new agency starting next weekend.
    You are paying the service and should get value for money. You should know exactly what you are paying for. My Dad's carers are mostly dislexic and were keeping notes to standard phrases like, All ok on leaving, nothing else required, sitting safely in chair- all complete nonsense and costing the earth.
    I started my own book but they started ignoring it, yesterdays carer made Dad's bed with the blanket underneath and the top sheet over the top of the blanket- I kid not.
    We have had so many different carers through the door and hardly see the same one twice, each one I have to explain Dad's little ways to. My kitchen is drowning in yellow stickies labelling where everything lives but I can't remember the last time a carer put anything away. I have had endless problems with office charging me for cancelled visits and sending carers at lunch time to serve breakfast. I gave them a fair chance but enough is enough and you need to vote with your feet. I am optimistic at the moment a lot of the problems will be sorted by the new agency
  11. susy

    susy Registered User

    Jul 29, 2013
    North East
    My dads care agency have made a care plan for the carers to follow and there is a part where they write in saying what hey have done and if there were any issues.
    When the carers had not followed the plan I highlighted the issue with the agency and they said they would deal with it. They didn't so I asked to have a meeting.... This happened. We reviewed the care plan and I did say that if it wasn't written down then it hasn't been done.
    Most of the problem in our case seemed to be my mum, I saw this because the carer wrote that she had said it was ok not to change his bed or shower him that day. I was rather cross but kept my head and told my mum off big style. Bottom line is that she is sick of having her house invaded however she can't do the caring herself. I appreciate it is really hard but I did say I would fight for her just as hard if needed... The bed has been changed every day now.
  12. Tubbsy

    Tubbsy Registered User

    Sep 5, 2010
    Thank you all for your comments and advice, it's all very useful and you are all very wise :)

    I had a phone call today from the Supervisor at the agency, who I met at my mums before the carers started, to tell me that my mum absolutely refuses to accept any help washing etc or to be washed. She said she was telling me as it was in the plan from SS and we a re private clients but offered no suggestion as to what they would do next. In the end I told her to go back to SS about it because I didn't know what else to say (and was at work so couldn't really talk).

    My question now is, what can SS do about it? Im hoping the carers will lersevere, as I suggested to to her, but I'm not sure they will.

    This was supposed to make things less stressful but it's not working so far :(
  13. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    It is early days, in the long scheme of things, and the 'good' news is that your mum hasn't outright locked them out or sent them packing (not that you've said) so despite what she says, she is to some extent accepting the presence of the carers and some of the support they offer. I am assuming she is accepting help with meals, the cleaning and walking the dog. So actually that is really positive for 2-3 weeks in.
    If her care plan includes personal care ie changing out of night clothes, wash/shower, putting on clean day clothes, breakfast - then the home carers should be working on the changing clothes and washing. If it is only to see that she has breakfast, then that is all they will do.
    I do appreciate that there are issues with the recording of support given, or offered and 'refused'.
    And for me it was that word 'refused' that bothered me - and still does even now dad is in a care home. My 'problem' was that many of the home carers would ask dad 'Do you want a shower now?' - or some such question - well, his answer was generally NO. And that's where it was left = he had refused. The carers do, understandably, work within certain limits and cannot force another adult to do anything. That seemed to mean they couldn't persuade or cajole and certainly not trick my dad into having a shower or wash. I asked them to change the question to one that expected a YES answer eg 'Time for you shower now (dad), isn't it?! So let's go into the bathroom'. This, apparently wasn't acceptable as policy - though in practice the carers who got to know dad eventually could chivvy him along most of the time. Sometimes he had wash first, sometimes didn't want to so had breakfast, then a wash. But it did take some time to build up his trust and for them to work out how to get round him. There were always occasions when he did say no and simply did not co-operate - you can't win 'em all.
    For the changing clothes - it's tricky. I built up a routine with dad so that he had a laundry basket directly opposite where he got undressed, with a notice above it telling him what to do. At first he put all his clothes worn that day into the basket - and got out clean clothes in the morning. That moved on to clothes in the basket at night, put on the clothes I left out on a chair (so he could easily see them) each visit. Then he had a nighttime carer visit so clothes in the basket - morning carer got out clean clothes from wardrobe. I found that if clothes were left on a chair or somewhere he could see them all, he just put them on again. And he did still sometimes get the previous days clothes out of the basket - nothing's foolproof.
    And all this was written in my prompt sheet for the carers.
    Do you know what your mum's bedtime routine is - and what she does in the morning? Working with what she usually does and just tweaking it may set her on a better course.
    Does the cleaner vac and dust etc - or also change the bed linen and towels and put them to wash? I'd never had a cleaner and so didn't realise they could change the bed as well.
    I know what you mean about the stress to start with - it was a learning experience for me too. Dad never did really accept that he needed any help, and even threw the carers out on some calls - some carers were more empathetic than others - there were a few blips with the agency - but overall we did get a useful routine in place, after a while. So there's hope for you yet, honest. :)

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