Introduction and 'Our Story'

Discussion in 'Legal and financial issues' started by Stevey, Nov 19, 2015.

  1. Stevey

    Stevey Registered User

    Jul 27, 2015
    Hi all,

    This is my first post on Talking Point. I've found the posts here by other members very useful and interesting and the Alzheimer's site as a whole has some fantastic articles. There are some very bright and knowledgeable people here!

    My mother is 75 years old and has dementia. It was I July that a letter came through after an assessment stating that she had "Moderate Dementia in Alzheimer's disease with late onset".

    My father has been struggling to care for her and has his own problems with poor eyesight, poor hearing and heart problems. He had been trying to get help from social services for some respite and arrangements were made for mum to go into a home for 1 week so that dad could get some respite.

    4 days prior to mum going in, my dad suffered a heart/angina attack. He's been in hospital since then and is awaiting decision on whether an operation needs to be made. We had to bring mum's care home arrangements forward (thankfully they were able to take her earlier) but we've had to extend her stay and might need to extend it even further.

    Depending on what happens with dad (who has been in hospital over a week now already), he'll be in no fit state to continue looking after mum at home. I've been keeping the social services updated on what's happening but I'm just worried about how much money is going into mum's care and how it's eating away at their savings. I understand there is a £23k threshold and they'll be reassessed when the figure goes below, but dad will not be in any state to have to worry about the arrangements. My wife and aunt and I are managing to keep on top of things so far.

    I started my own blog about this year, as my wife and I became parents to a beautiful baby boy, so we've been struggling ourselves with that.

    Does anyone have experience with the £23k threshold being met and being reassessed? Would the council then take over and agree to pay towards continued care? We are thinking longer term now seeing as dad needs time to recover, unless there is some home care they could receive. Night times are particularly difficult, I wonder if a "night shift" carer is such a thing?

    Thanks and best regards,

  2. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    I have no experience, yet, of needing financial support from the authority but I'm bumping this up to save it from getting lost


    Sent from my iPhone using Talking Point
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Welcome to TP Stevey:)
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Stevey
    a warm welcome to TP - it's good that you've been reading some of the threads which ask about finances, there's a good deal of useful information floating around.
    You and your family have a lot to contend with right now, no wonder you want to get things straight.
    Given the complexity of your situation, it's probably worth asking the LA up front for an up to date financial assessment - for your mother's care, only her finances should be taken into account; same for your father.
    There's attendance allowance, and carer's allowance to be considered.
    There are night carers, but these seem to be harder to organise than the more usual day time home care visits. Indeed some on TP have organised live-in carers.
    Before your father is discharged, there should be a full assessment of his care needs - and no doubt a re-ablement package will be put together, if he is to return home. make sure you push for as much care as possible - 4 carer visits a day, OT etc visits. I'm really not sure that overnight care can be available.
    Sorry - don't feel I've been all that helpful really.
    Best wishes
  5. Stevey

    Stevey Registered User

    Jul 27, 2015
    Thank you all for the welcome!

    Shedrech you've actually been very useful, thanks :)

    Dad is scheduled to have an op next week so will be in hospital for at least another week. By the sounds of things (eg, what I've been told by the social worker who made the calculations), mum is considered a self-funder and would still not reach that £23k threshold for a few weeks.

    Still, it's a huge amount of money being spent each week which is coming out of their savings - and of course, mine and their grandchild's inheritance of course.

    I will ask about the re-enablement thing. I haven't heard of that before but of course dad himself may need some care and support for himself.

    Thankfully mum appears safe and happy but had presence of mind to ask me today "When am I going home" which upset me a bit. It must have been during one of her 'clearer' moments when she realised she wasn't where she was suppose to be... :-(

    I'll use this thread to keep posted on developments.
  6. 2jays

    2jays Registered User

    Jun 4, 2010
    West Midlands
    Please keep in mind that asking to go home isn't necessarily a specific request.

    Mum often asks to go home, but she doesn't mean her home before she moved into care, she I think, means her child hood home, or it could be an emotion, rather than a place. A place where everything is ok and safe because her world is so jumbled.

    I've read on here of people wanting to go home, when they are still living in their home of over 10 years :(

    Keeping fingers crossed things work out for you xxxxxx

    Sent from my iPhone using Talking Point
  7. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    welcome to TP Steve you will find loads of help and advise here, and congrats on the baby
  8. fizzie

    fizzie Registered User

    Jul 20, 2011
    You really need to get a formal assessment and financial assessment done - a financial assessment takes a bit of time to kick in so you need to be ahead of the game. They will only take into account your mum's savings and half the joint savings and any money like pension money that is hers alone. Your Dad's money won't be taken into account or his half of the savings - at least that is my understanding. So they need to formalise the financial assessment to set your mind at rest. Given your Dad's condition it may be that he will find it very hard to cope when he comes out of hospital - he will at least need time to recuperate and then be involved in the decision making process about where is best for Mum

    Good luck, do keep posting
  9. Stevey

    Stevey Registered User

    Jul 27, 2015
    Here is a little update for you as of Friday 11th December.

    My dad was supposed to be discharged from hospital earlier this week, but due to some poor response to new drugs he's back in critical care but in good shape - but just quite upset about having to stay in there so long (over 4 weeks now). The sooner he can come out, the better but we are at the mercy of the doctors (and of course he's being looked after by the right people).

    This of course means that mum has also been in the care home for the same time. I visited her yesterday and she was in good spirits. After initial concerns about the level of service there, I know realise just how fortunate we are that she's safe and happy and being looked after by a proper team of carers. She is regularly washed and properly fed and dressed - something which my father hasn't been able to do at home on his own with her (and with his worsening sight and hearing of course, not to mention he's getting on himself and his heart problems).

    More positives and things worth noting for those people going through similar process (and especially seeing as this is not something most of us really understand of course - it's all new and bewildering and quite scary):

    • The social services team and individual support workers at the local council could not have properly understood the extent of mum's condition from their visits at home in mum's own environment. An hour or two in their company isn't enough.

    • The cognitive impairment and dementia services team from the hospital would not have been able to understand the issues either from answering questions and taking notes on a piece of paper during their visits and assessments. Going in for an appointment and answering questions isn't enough for them to understand how things are. I went to one of these sessions and they could not have had a proper understanding of their requirements.

    • Even my parents' GP would not have been able to understand the full scale of it. My dad can tell them the struggles he's had and how challenging it is looking after her, while mum would likely sit their cheerily not understanding what is being said. The GP would only be able to act in their best interests based on snippets of information.

    It is the staff at the care home that have now had over 4 weeks to understand the scope and extent of mum's condition, and of course what my dad has had to put up with for a long time now. They are on the front line, hands on, 24 hours with her. They know her habits and her quirks. They have fed her, washed her, dressed her and tried - with some difficulty it seems - to get her to sleep at night. They can see and understand how she communicates with them and with the other residents and exactly what challenges are faced by someone looking after her.

    Surely if they - who are trained to look after such patients - find it difficult or challenging, how is my father supposed to cope on his own at home and in his condition?

    Mum is considered a 'self funder'. Fortunately though, the council are in the process of extending her stay in the care home until January and will step in to help with the cost, as they will be re-assessed as the savings are reaching the threshold. Mum will only have to make a contribution (although that figure is yet to be seen - I await official paperwork on that). This means dad should have enough time to get out of hospital, rest up, and for us to arrange new care in the community arrangements for them both.

    So positive steps, despite all the stress we're under with having them both in places they'd rather not be.

    I'm feeling positive about the next few weeks but it's certainly been a trying time.
  10. chris53

    chris53 Registered User

    Nov 9, 2009
    Hi Stevey, and welcome to Talking Point, boy such a lot to take in,in such a short time, best wishes for dads return home and it's essential that his needs are considered, so many times one partner who is elderly and has physical health problems is just left to get on with looking after a loved one with dementia, great you have got so much put into place:) understanding and support here by the bucketful.
    Take care
  11. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    So good to read your update Stevey
    a shame your dad has to stay in hospital longer - but so pleased he and your mum are getting the care they each need
    do let us know of future developments
  12. Kenhy

    Kenhy Registered User

    Nov 25, 2015
    Welcome from another newbie Stevey, hope you get all sorted soon. ;)
  13. Stevey

    Stevey Registered User

    Jul 27, 2015
    Hi all,

    Here is another quick update for you:

    Yesterday, a full assessment took place at the care home. There were a lot of people present, which I felt quite encouraged about:

    - A lady from the Continuing Care team, who led the meeting and worked through the assessment;
    - My contact from social services;
    - A mental health social worker;
    - And two representatives from the care home

    It wasn't a pleasant experience hearing some the things being said about mum's behaviour, but I understood it was necessary. My father was present too - he has since come of out hospital and recovering well from his triple heart bypass. It's fortunate that he is hard of hearing as there were things being discussed that he probably shouldn't be hearing in his condition.

    What has happened over Xmas is that the council is looking for additional funding. Mum's savings is under the threshold now as she's been in there for quite some time, but the next steps - in terms of the report and giving it to 'the panel' - are key in determining where mum goes and who is supposed to fund it.

    The care home can't cope with her. A nursing home is probably the best next step as dad can't cope looking after her anymore (or at least not yet). But, all we can do is wait for process to be followed, which I understand will take some time...
  14. canary

    canary Registered User

    Feb 25, 2014
    South coast
    Yes, it can take a while stevie, but at least the ball is rolling now.
    In the meantime, your mum is being looked after (even if they do consider that its not the best place for her) and Im pleased to hear that your dad is recovering.
  15. Stevey

    Stevey Registered User

    Jul 27, 2015
    Hi folks,

    Another update for anyone that might be interested in how we handled the financials for my mum's care. Of course, this is only applicable to our case and likely won't be the same for other people, but hopefully it may give someone a good idea of what might be expected when things like savings are considered and thresholds and when the CCG - Clinical Commissioning Group - might come into play.

    Lots has happened since my last post and it has been a very distressing time for everyone. My father is home and recovering well after his heart bypass. My mum however has deteriorated while in the residential care home. Her behaviour has been up and down and my sister and I have both seen for ourselves how hysterical she can be at times. She often refuses help from the carers or even ourselves with washing and dressing and has now all but lost the ability to use a toilet on her own. My own blog has diarised the events we've been through but this forum doesn't allow me to post links just yet - but I'd very much like to share that with Talking Point in future.

    In January we had a full assessment. A rep from the Continuing Care Team spoke with my father and I and with the care home and social services about mum's needs. It was a very unpleasant meeting to have to discuss those topics but I understood it was all in everyone's interests, and mum's in particular of course. After that, we waited for the Panel to decide on what would be the next best step.

    In February we received a letter confirming that the CCG have approved for full continuing care funding, which I believe literally means that whatever care is required to be given to mum going forward - or at least for the next 3 months up to another review - the NHS will pay for everything.

    This meant we had a bill for mum's stay in the care home up to a point where the £23k odd savings threshold was met. After that, the council stepped in and she made only a contribution. This was paid up to another point at which the CCG took over completely, meaning the council / social services were no longer involved and didn't need to assist with funding.

    Just this past Monday, my mum was discharged from the care home and she has been moved to a local nursing home. While it's a positive step in some ways - eg, the new home should be better equipped with better qualified staff to look after her - I already have my own worries about her care, but of course it's just a matter of allowing some time for her to integrate and for the new home to understand her patterns of behaviour.

    Another sad part is the fact that my father is having to accept it's not likely she'll be able to go home anymore. We had considered the idea but both social services, the former care home and the CCG all said "the patient is not safe to go home", which was very hard to accept.

    All we can do now is see how she fares in this other new environment. Things have been so distressing to the point that my GP signed me off work for 'stress related health problems'. I've been poorly and lost a lot of weight since last November when dad had a heart attack, which led to mum going into care. Proof that dementia affects everyone involved and attached to the poor soul with the condition.

    Next update when things progress...
  16. tigerlady

    tigerlady Registered User

    Nov 29, 2015
    Thank you for posting your story Stevey and so sorry you and your family have been through so much upset. You describe perfectly how the CHC system should work, with sympathetic social workers and care workers who really know your Mum and your situation, and the DST meeting held with you and your father there. So many people in this forum have met huge resistance when trying to get a proper assessment for CHC for their loved ones.

    I too was very distressed at my husbands DST meeting when I heard the extent of his behaviour, so I am glad that your father's poor hearing saved him from some of the distressing things that were mentioned.

    I hope your mother is well looked after in the nursing home, and is as happy as she can be, and that your father continues to recover and is able live in his own home, and that you get a break from all your stress and worry xx
  17. Stevey

    Stevey Registered User

    Jul 27, 2015
    Thank you tigerlady for your comments. I do believe we have been quite fortunate with support and sympathy from the authorities but perhaps this is down to the individuals working on the 'case' - the council social worker involved got to see my parents from early on and she had been in touch with us and the care home since my father had his heart attack, and was able to see for herself how mum's condition went down hill.

    I kept in regular contact with social services and the care home over email and always stayed positive and presented the facts as I saw them. Eventually this included representatives from the Continuing Care team and then eventually - most recently - the CCG, and now of course the new nursing home, who appear a lot more equipped and understanding of mum's condition than the residential home was.

    That's not to say the previous home tried their best but mum was a big challenge for them. That home was quite modern and spacious whereas this new nursing home is a lot more 'old fashioned' but more homely. I do believe the environment and staff play a bit part in how a dementia patient reacts to their surroundings - I think this will be something evident as time goes from now.

    One annoying thing to happen is that my dad has received the cheque back from the council saying they can't cash it as they are not convinced about the signature. At the start of mum's stay I managed to get her to sign a couple of cheques in order to be able to pay bills from her account later on. She cannot now write or read anymore. So I'm looking forward to explaining to the council that it is indeed her signature and that we'll have to faff about moving funds around in order to pay her care bill if they won't accept it...

    On the whole, I'm a lot more positive now than I was 2 weeks ago, when I was just about at the brink of despair over everything. Keep smiling and get on it with, is what I've been doing!
  18. Stevey

    Stevey Registered User

    Jul 27, 2015
    Here is an update for the forum:

    My mum has been in the nursing home for a few weeks now and my father and I have settled all the finances associated with the stay in the residential home prior to that. To say the last few months have been a tad difficult is an understatement: it got to a point where my GP signed me off for "stress-related health problems". It had all finally got to me.

    That's all in the past now and I'm glad to say that mum has been settling in well and even shown signs of improvements. We have witnessed far less episodes of her being hysterical and hugely distressed and whenever I've visited she's been dressed, alert and smiling. Her toileting habits have improved - she speaks up when she needs to go and on a few occasions now I've helped her in the bathroom and she'll do what she needs to do, throw the paper where it needs to go, dress herself properly and wash her hands (with a little prompting of course). The beauty of this forum is that you'll probably know exactly how difficult that can be at times!

    She's even let me change her or put socks/slippers on without making a fuss. Such small insignificant things but a huge step in the right direction for us.

    My father is recovering well after his heart op but facing a future without mu, which is hugely sad. I also feel a huge amount of guilt over how she had been wrenched away from her home life last November and put into unfamiliar places and with strangers. It breaks my heart but I know I did the best I could over these last months under difficult circumstances.

    At least now I can relax just a little bit knowing that mum is in the best place for the time being, despite how anxious things can be at times. I explain in my blog how I still dread each visit as I don't know what might be happening on my arrival, but it's just par for the course nowadays.

    I have to say that Talking Point has been a very encouraging and re-assuring place to visit - so many people with similar stories and going through the same difficulties and worries - it's just so sad that this has to happen to those we love.
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Hi Stevey
    know just what you mean
    so good to read that things are on a more even keel, each in a different way, for your mum, and for your dad, and for you
    as Mr Grace would say "You've all done very well" :)

    and so agree about TP

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.