Paranoia or do LAs really try to push people into full time care to save costs?

Discussion in 'I care for a person with dementia' started by paulh, Mar 25, 2015.

  1. paulh

    paulh Registered User

    Mar 23, 2015
    Hello, I'm new to this website so this is my first post. Apologies for it being quite so long winded, although I have quite a lot on my mind at the moment...:confused:

    My father died over 3 years ago, leaving my mother alone in our family home.

    My mother is 79 years old, has mild to mid stage Alzheimer’s disease and suffers confusion regarding times of the day, people’s names, places etc. and is more or less confined to the house nowadays although is very happy watching TV, listening to music and the radio and is more or less stable, as far as anybody can be with a progressive mental disease. Due to her dementia, she receives care at home 4 times a day to attend to her medication, washing, eating, etc. needs for which she partly pays herself from her pension & attendance allowance. She is physically very able bodied and uses no form of assistance (Zimmer frame, wheel chair, crutches, etc.).

    I live abroad and visit only twice a year on average, although am in constant contact with the care agency as well as my mother, to whom I call almost every day. I order readymade meals through the Internet on a weekly basis, which the carers heat in the microwave every day. I also deal with any other services my mother needs such as chiropodist, hairdresser, basic repairs to the house, etc. My aunt and my parents' long time neighbour also visit regularly in order to check up on her.

    Last September, my mother starting exhibiting occasional incontinence problems when I was there and so I called the local continence assessment team, although was told they have a backlog of 12 weeks and my mother would be added to the list and seen in due course. By Christmas, nobody had been to see my mother so I asked the care agency to contact the continence assessment team and try to move things along. The reply from the care agency was that the matter was in hand and the problem was that there was a huge number of people on the waiting list, although my mother's case had been marked as "urgent".

    Two months passed and still no result from the continence assessment team...:eek:

    Two weeks ago, I contacted the care agency and asked again about the continence assessment. To my surprise, the reply was that a social worker has now been assigned to my mother’s case and has arranged for my mother to be checked over by a doctor. The result was that my mother was apparently over 1½ stone underweight although otherwise in good physical health. It has also been noted in the daily logs (according to the social worker), which the carers fill out each day, that her not eating enough was a regular issue. In spite of this, the care agency has not once informed me of this and the situation has been allowed to deteriorate.

    As a result of my mother’s weight problem, the social worker is now demanding that she be admitted into a care home, which apparently specialises in nutritional requirements, for a period of 2-4 weeks, if her weight does not significantly increase over the next 4 weeks.

    I contacted the care agency last week and asked them why the situation has been allowed to get to this state. I made a list of changes they have to make in order to make sure my mother is actually eating the food I order for her. I’ve received no reply to that email for over a week.

    I also contacted the continence assessment team today and was advised that nobody has been in contact with them from any care agency and my mother's case has certainly not been marked as "urgent". They also couldn't explain why nobody had been to see my mother before now to carry out the assessment. :mad:

    Am I being paranoid or does this look like a conspiracy in the making?

    I fear that if my mother is forced into this care home on a “temporary” basis, she will not be allowed to return home after the 4 week period and her temporary status will become permanent. After that her care funding issues will no doubt be in question by the LA.

    My mother is adamant that she doesn’t want to go into any kind of care home and is intent on staying at her real home in which she has lived for over 35 years for as long as possible.

    The question is, how liable is the care agency for effectively creating this situation through their apparent negligence (or intent), which could now force my mother into a care home and possible self-funding far earlier than necessary? I’ve read from various forums on the Internet that LAs nowadays find it more expensive to keep people in their own homes and are all too keen to try to push people into residential care far earlier than necessary, citing anything as an excuse to do so and social workers are usually the ones to push it through. I'm sure the care agencies also know about this and are willing to exploit it, particularly if they have more challenging cases on their books that they could do without.

    How much power does the social worker have in this situation? Can I prevent this action in any way? How culpable is the care agency for effectively creating this situation, if it means that my mother has to go into care against her will? Can I demand that the care agency provide a nutritional specialist (who is apparently on offer in this care home) to visit my mother at home in order to try to reverse the situation?

    I have Lasting Power of Attorney over my mother, although unfortunately only over her financial affairs.

    Thanks, if you made it this far. Any advice or answers to the above questions would be most welcome as well as any other general comments.

  2. win

    win Registered User

    Oct 14, 2012
    Hello Paul, I am sorry to read your dilemma and must quickly add that I think you are doing a fantastic job from abroad. I was an overseas carer myself for my mother for 12 months, after that she came to live with us. It is so hard when you are not around so I really sympathise with you.

    From 11 years personal experience, I would never trust a care agency. I have found that they will say anything that makes their lives easier. I have also found that if you want anything done, you need to arrange it yourself and chase it again and again. Having said that we had the same Social Worker for both my late mother and my late husband and she was absolutely fantastic and helped us through funding and everything else we required.

    On top of that I can add, that if you mother is regarded as having capacity or unless they can prove she is a danger to either herself or others, they cannot make her go in a home. I firmly believe that they now try to allow people to stay in their homes as long as possible, the trend is changing in that favour very much, because they realize that in most cases home is best for all concerned.

    Some people however do thrive in a care home and enjoy the social interactions provided where others deteriorate much quicker than they would have done at home. You know your mother better than any one and must therefore fight for what you believe to be in your mother's best interest, particularly as you have POA and that is therefore your responsibility.

    Have you agreed that the carers write down in your mother's care plan after each visit exactly what your mother has eaten and drunk, that they do stay there to supervise her eating and not just leave her with a meal. They are usually so pushed for time and only allowed 30 minutes for a lunch and tea visit. Hopefully they have a least an hour in the morning. You can ask for a re-assessment to cover your mother's needs the outcome of which would probably be in her/your favour as every one wishes to make sure your mother is well fed for loss a better word. I take it your mother's carers log in and out at each visit, could you ask the domiciliary company to send you a copy of the time sheets and care plan logging, daily, weekly or what ever suits them and you so you can check that everything is running to plan.

    The domiciliarycompanies will try to get away with murder, at least that was the case with the 4 I have used over the years, they were all equally bad, but the carers were mostly wonderful and some are now life long friends of mine.

    I do hope you get all this sorted but it an ongoing thing as you will know and you'll need to work very closely with the domiciliary company. Is it privately own so you can deal with the owner or is it a managed concern? I wish you luck
  3. RedLou

    RedLou Registered User

    Jul 30, 2014
    Where my father lives, the carers were not allowed to insist he eat meals. Such behaviour was seen as borderline bullying/abuse. They did not have time to coax him. Result: hospital admittance, nearly at starvation levels. Long distance caring is problematic. It is the distance from family that leads to relatively early admittance to a full-time care institution imo.
  4. Beate

    Beate Registered User

    May 21, 2014
    There's a couple of issues here. You mention self-funding but I am confused about the context. If she is self-funding, i.e. Has more than £23,250 then SS won't normally get involved anyway. But to establish that, a financial assessment has to be done first. Do you know whether it has? If she is not self-funding but is assessed as needing round the clock care, this will not be provided at home as it's too expensive. I don't know how much say you would have without a health POA. I will say this though - if your mother has no longer capacity to decide this herself, a best interest meeting will have to be held. You'll have to ask yourself whether a care home might actually be best for your mother. It's one thing trying to keep promises to your mother, and another thing to successfully keep your mother at home with adequate care from afar. You can't help where you live and you're doing all you can but at some point it might not be enough anymore. I don't think there is any conspiracy here, just the stark reality of care agencies in this country. I would speak to the social worker again and ask about any assessments they have done on your mother and whether a doctor has been involved in the malnourishment issue.
  5. Witzend

    Witzend Registered User

    Aug 29, 2007
    SW London
    To be honest I don't see how putting anyone in a care home would save the LA costs. If the person is self funded then the LA will not pay anyway. If the person is not self funded, then a care home will cost a lot more than carers coming in. Four times a day is the most visits most LAs seem to fund.

    Maybe it simply comes down to the amount of care needed. There may often come a time when carers popping in even several times a day is just not enough any more - the person needs help and supervision 24/7.
  6. curtainsgalore

    curtainsgalore Registered User

    Nov 2, 2014
    I felt that the LA wanted to keep my Mum with mixed dementia at home much longer than I thought was safe, with carers and my support. Mum declined and de skilled so much when she did go into a care home, I totally saw where the LA were coming from.
    Also I don't really think it's the care agencies position to be arranging incontinence people to come around, they are just there to support the care package that has been prearranged with them, not organising appointments.
  7. dementiascot

    dementiascot Account on hold

    Mar 26, 2015
    Hi Paul

    There are a number of issues to address in your post.

    First the assessment for a care home place. What the assessor has to do is look at the needs of the person and how they can best be met with MINIMAL intervention to keep the person safe. Moving someone with dementia to a new environment can be highly distressing for the person so should only be done when there are no other options or all other options have failed. This doesn't seem to be the case for your mum. If the social work insist on a move you can raise a formal complaint and insist no move is made until the complaint is investigated.

    Regarding weight loss, there can be a number of reasons for this. I would suggest;

    Get the GP to rule out any underlying medical conditions
    Request a review of how nutrition and hydration needs are being met (it is common for care staff just to leave food out for someone with dementia but this is often insufficient, the person may require prompting and supervision at meal times - the care plan should be detailing any concerns staff have about eating and drinking, if not questions should be asked. Are staff trained in dementia care?).
    There may be insufficient time in the current care package for staff to stay with your mum and ensure she is prompted to eat - if this is the case ask for a review and increase the level of support at meal times.
    People with dementia often experience changes to their food preferences, they may start to prefer sweet or spicy foods and stop eating foods they once enjoyed. If all the above has been done and your mum is still not eating then changing the diet may help. You can ask the GP for referral for support with nutrition if needed
    Sometimes it can be a dental issue so get this checked out
    There may also be swallowing issues which are making eating more difficult a referral to the speech and language team should help with assessment about this.

    The assessor must take into consideration your mothers past and present wishes when making a decision and should also consult your for your opinion.

    Regarding the care company and the missing referral to the continence team. I simple request to them to provide evidence that the referral was made should be sufficient as it should be noted in your mothers care notes. If however they refuse you may have to raise a formal complaint with the care company and the local authority and you may also wish to speak to the care quality commission

    On the matter of continence sometimes it is about ensuring the person with dementia can clearly identify the bathroom, where it is and how to access it. For some people it helps to paint the bathroom door a bright colour to make it stand out from the other doors. You can also put a sign up which gives the person further clues that this is the bathroom such as the word and a picture. Is it easy for your mum to see the bathroom from the living room, where she would normally sit? If not it can be as simple as moving a chair so the bathroom is in eyesight. It can also be about carers providing regular prompting to use the bathroom when they are there, do they do this? I can't post any links but if you google continence management and dementia you will find an excellent resource from Alzheimers Australia.

    I hope this is helpful and best wishes for you and your mum.

  8. vickduffet

    vickduffet Registered User

    Mar 25, 2015
    True words.. dementia and incontinence
  9. paulh

    paulh Registered User

    Mar 23, 2015
    Thanks for your comments!

    At the moment, my mother only pays a fraction of the actual costs of care to keep her in her own home. The LA pick up the tab for the rest of it. My point is, that if she was to be pushed into a care home then the LA would of course then investigate the option of her funding her own care, through means testing, as a potential self funder thus effectively reducing if not practically eliminating the costs that the LA are now currently paying.

    Check out the attached Express article, which was published only last month.


    Attached Files:

  10. paulh

    paulh Registered User

    Mar 23, 2015
    Hello Yvonne,

    Thanks for your excellent comments and suggestions! I'm currently making a list based on your reply, to present to the care agency & social worker.

  11. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    With the best will in the world, a long-distance caring situation is always going to be problematic, simply because you have no real idea what is going on outside the carer visits.

    I lived 2+hrs away from Mum (with AD)and my cousin was on hand just down the road, but it became impossible to control what and when she ate. It eventually dawned on me that the reason she was continually eating scones and jam, was that was all she was able to 'prepare'. The cupboards and fridge were stocked but she simply didn't know what to do with the contents any more.

    We also live 3+ hrs away from MIL. She has very mild VaD but I was concerned for a couple of years that she was severely malnourished. She had the frozen meals delivered weekly, but some of these have only 250 cals which I think is inadequate for an adult's main meal. We tried suggesting she supplemented these with tinned potatoes and veg, bought fruit smoothies, but quite frankly, she couldn't be a****, and filled up with chocolate chip brioche and chocolate buttons. The fridge was empty (milk, cheese spread and eye drops) but there were packets and packets of chocolate treats in the cupboard. :rolleyes: It's hardly surprising virtually all her teeth gradually fell out and she felt tired and weak all the time.

    It came to a head last year when she fell and was hospitalised twice. She moved into a CH where she was monitored properly - she was just over 5 stone and skin and bones underneath the baggy clothes. The manager has told us now that she didn't think she would pull through, but 12 months on, she is now 1.5 stone heavier, and looks 10 years younger. Regular meals of wholesome home-cooked food has been her salvation, and she acknowledges that herself.

    I suppose what I'm saying is that you will probably be unable to maintain her in her own home indefinitely anyway and sometimes the best thing to do is to make the move sooner rather than later. Personally I would take up the respite offer and see how she gets on. If it turns out that she thrives on the 24/7 care and companionship on offer, then in many ways, you have the answer right in front of you rather than having to react to a crisis situation later on.
  12. Moonflower

    Moonflower Registered User

    Mar 28, 2012
    I spent several years trying to help my parents from 500 miles away, it is very difficult.

    To be honest I think that there is a limit to what you can expect from a care agency.

    In the end, the LA is unlikely to fund more than 4 care visits a day and for most people with dementia a point will come when that isn't enough any more.

    Weight loss can lead to all sorts of problems, as can incontinence, so the offer of a trial in a care home could be a positive - at least the social worker is trying to help your mother. She may thrive in a good residential home, this is a chance to find out.

    There are an awful lot of people posting here who are desperately trying to get residential care for a dementia sufferer who really can't cope at home any more, in your position I wouldn't turn down help lightly.
  13. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    Dietician assessment via GP

    Hi Paul,

    Sounds like you are doing an amazing job, just wanted to add a couple of things to the already excellent comments here.

    First and most importantly, in your situation, I would suggest you next step is to contact the GP and arrange a dietician to assess your mother. Make sure to speak to the dietician directly and say that you need the GP to prescribe meal supplements like Ensure/Fortisip - there are different formulations. This is assuming your mother can and will feed herself yoghurts or drink milkshakes from cartons?? That could be all she needs to put the weight back on. Also obviously tell the social worker that is what is in your mother's best interests to keep her environment stable as she has dementia. Possibly the SW doesn't really know what she is doing, also possible she is sniffing around for money. Certainly don't trust them from my little experience with them. However I don't think there is a conspiracy with regards to the Care Agency, they just want to be paid and it sounds like your mother is an easy job for them. She is not abusive or obstructive from the sounds of things.

    I would take anything you read in the Daily Express with a huge pinch of salt, it is all designed to raise your blood pressure!!! :D Focus on the job at hand, understanding how all these agencies work and who is responsible for what is challenging, and to do it from a distance even harder!

    I agree with the previous posters it is not the care agencies job to contact the continence assessment team, even if it was I would not leave it to them. Everyone of these agencies is in their own little office not knowing what anyone else is doing. You have to be on them, and you have to ask the right questions. NB If I had a problem with the continence assessment I would be calling the district nurse as they are the same thing aren't they? You might get lucky....

    You cannot officially get the care agency to do anything that is not in the care plan and especially if it would take longer than what they are currently doing e.g. you need to sit with her and make sure she eats the food.... that will have to involve a reassessment of her needs and rewriting that care plan. Which involves an assessment by whoever is providing the funding. That is probably why you have not had a reply to your email, because it is too complicated for them to act on. You will need to call them and find out what they need in order for them to make the changes.

    If it comes to it that she needs someone to sit with her while she eats and that is too long a time for the carers to be with her from the funders perspective, then I guess you need to think about getting in volunteer services, neighbours etc. or care home time? If you think this is a possibility then you need to persuade the SW to try the dietician at home route as the last ditch attempt to keep your mother where she wants to be, but keep her on board as to keeping the future options open.

    Regarding your question on care agency liability I am sure they have their get-out clauses anyway, but if it is not in the care plan that they need to make sure she eats then it is harder to prove anything. As someone else said, they are not allowed to 'force' someone to eat. They are covering their backs by writing in their notes that it is an issue, but I would be surprised if anyone back at the office actually reads the notes when they come in. You could argue that the carers should have contacted the GP or alerted you though. I think that is in their remit.

    Someone also asked about training in dementia for care agency workers. I am employed by one of the care agencies that provide domiciliary care via social services, NHS and private routes. Ostensibly we are trained in dementia but in reality it is 20 minutes so barely anything is covered. Then there is a multiple choice test which the trainer gives you the answers to, so they have it on record that you have successfully completed your training. Pretty shocking. They are in most part good people, it is just a terrible system.

    So the people on the ground generally have little specialised knowledge, although they may have gained that depending on how long they have been in the job and who they have worked with. Hopefully your mum will have regular carers who get to know her, but of course that is not guaranteed. Above that is the field manager/line manager or placement co-ordinator who does the writing of the care plan and checking up re. any issues, then there are the people in the office who are all day fielding calls from all directions and generally fire-fighting and trying to keep the show on the road. I don't know who you have been speaking to but I think you need to speak to the placement manager, if possible, if you want to know what is happening with your mum at home, and to the people in the office if you want to know what is happening re. funding. That is how it works with my agency anyway; like I said you need to understand who is doing what and what their responsibilities are so you can prompt the right people, as they cannot always see outside their little box.

    Hope some of that was of some help. Best of luck!!
  14. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    Great post MerryWive :)
    Having worked both in social services and a care agency, I can absolutely recognise the situation you describe. Sad, but true, especially as most staff mean well. The problem is that the systems do not allow them to give the best care they could:( And yes, we have to figure out all the various chains of responsibility in order to get the best care we can for our loved ones.
    It's not easy, even without the added dimension of living a distance away.

    All the best

    Lindy xx
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    I was a long distance carer (the Atlantic was in the way) and I have to say, the 3 months (yes only 3 months) that I was trying to manage my mother's care in her own home from a distance was a disaster. It wasn't until I got her into an extra care /very sheltered housing situation where she was in her own flat, but had on-site carers, meals delivered, medication handled, personal care overseen and cleaning and laundry done for her that I could in any way relax. Probably the most important part of that arrangement is that I could contact the domiciliary care manager and say "what about X?" and get an answer.

    If you really want to keep her in her own home, I believe that there are people who provide the sort of service the domiciliary care manager provided: day to day coordination basically. But it's probably hideously expensive as compared to what it costs in a purpose built extra care facility.
  16. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    Thanks Lindy! By the time I had finished writing that last night I no longer could tell whether it made sense or not!!
  17. paulh

    paulh Registered User

    Mar 23, 2015
    Thanks to everybody for all your excellent and practical suggestions! Your comments and advice have been hugely supportive and have given me additional avenues to explore. Information is certainly power!

    Before I started this thread I was fairly close to despair and no doubt feeling somewhat paranoid about certain "coincidences" seeming to culminate into one ulterior motive. I'm still suspicious about social workers although I'm more now of the opinion that the care system in the UK operates on the basis of the left hand not knowing what the right hand is doing. In other words organised chaos.

    I still believe there is still some way to go before my mother needs full time care, although acknowledge that that day will surely come and probably in the not too distant future.

    At the time of writing this, the care agency have re-reviewed my mother's case and have allocated additional time to her meal visits. This simply means than a carer sits and chats with her whilst she eats and prompts her and /or offers to make something else if she doesn’t appear too interested. This has made significant progress and her weight is now starting to increase at the rate of a pound per week, according to the care agency. Care doesn’t always have to be so complicated for it to have a significant impact on someone’s life.

    I’m not sure what the social worker’s reaction will be to this, although it’ll be interesting to gauge whether the mood is one of more disappointment if she feels she can’t justify sending my mother to the care home, albeit for only 4 weeks. Oops, that paranoia feeling is creeping in again...:eek:

    I’ll keep you posted on how things go.

  18. paulh

    paulh Registered User

    Mar 23, 2015
    It certainly made sense to me. Thanks for your time and trouble!
  19. tre

    tre Registered User

    Sep 23, 2008
    Just to reassure you that in my experience most LAs would not want to push someone into residential care when they can get away with them remaining in their own home with carers visiting.
    When my mum was severely affected with vascular dementia, doubly incontinent, challenging behaviour, wandering, no recognisable verbal abilities left save shouting moaning or crying and my dad aged 83, himself severely crippled with rheumatiod arthritis affecting his mobilty and manual dexterity, in the opinion of the LA my mum was not bad enough for residential care.
    I think in these days of cut backs it is much cheaper for the LA for someone to remain at home with carer visits and with their budgets much restrained this is what will happen.
    I think you will find a great many people pleading with the LA that their parent is no longer safe at home and the LA saying a CH is not neccessary so I really think that with LAs they only recommend residential care when there is no other option.
    Just look at the number of threads where a distance carer is horrified that their parent is about to be discharged from hospital after a crisis back to the very situation from which the crisis ensued in the first place.
    Having said that I have agreat deal of sympathy for your plight of trying to do your best for your mum remotely.
    I am here in UK living with my husband for whom I care and I find it difficult trying to contact the right person or to get any continuity of who you speak to. Someone rings and leaves a message and no number is ever left to allow you to get back direct to the person who rang you. Then you do get back and then they call when you cannot pick up and so you continue to go around in circles.
    I hope you manage to get all this sorted out
  20. MerryWive

    MerryWive Registered User

    Mar 20, 2015
    Hi Paul, great to hear you are feeling better equipped to deal with the situation now, and really glad to hear that your mother is gaining weight already. :)

    Yes, please do let us know how things go...

    Love this!

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