1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,430
    East of England
    I have had the conversation with my children about when the need for permanent care might arise. He is not at that time yet but only because I have managed to put some home care in place. Last week I was at the end of my tether, but struggled through. Wherever the person is being cared for, the disease progresses and we all worry about the symptoms, I know I do as I wonder if I am doing the right thing by him. It won’t be long before his mobility is even worse than it is now, and then what? A bedridden person is very difficult to care for alone and I couldn’t manage that. So you are doing the right thing by your wife.
     
  2. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Hi everyone

    The case manager, assigned to oversee the current assessment period, following my wife's sudden decline, came to the assessment unit yesterday for an initial pre-planned visit.

    I was sort of dreading this, as I was half expecting that they would be pushing to get my wife back home (with the necessary support), something that I sadly felt I could no longer cope with.

    Well, it couldn't really have gone any better. The lady was very people orientated, empathetic and very knowledgeable. One of our sons and his partner were with us and the CM went to great lengths to get all our views on how we felt the future care needs of my wife should best be met.

    She thoroughly explained the process and went through the input/reports she had received from all parties involved over the last few weeks. It helped that we all seemed in agreement that due to my wife's deteriorating mobility, looking after her at home was no longer an option. So with our agreement, she will be recommending to the LA "panel" that a suitable residential placement is required as a matter of urgency.

    I had asked my son's partner to be involved, as she runs 2 local CQC registered care facilities for young adults with special needs, so is highly qualified and knows the "system" and how things ought to be done. I am glad to report that she was very impressed with the Case Manager, so I came away feeling more confident that things will progress well, not only for my lovely wife, but also for the family.

    I will keep you posted.

    Phil
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,702
    Female
    Dundee
    That's such good news@philbo! Wishing you success in finding a suitable home for you wife.
     
  4. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,302
    Merseyside
    I’m glad the meeting went well @Philbo.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    Good news Phil. This form of meeting makes a sad situation so much easier to cope with.
     
  6. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,430
    East of England
    So pleased for you @Philbo and when you have competent people working with you it works for everyone’s benefit.
     
  7. canary

    canary Registered User

    Feb 25, 2014
    10,709
    Female
    South coast
    Im sure that must have been a relief.
    I hope a suitable care home is found soon
    xx
     
  8. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Thanks everyone for all your kind wishes. Next, the dreaded financial assessment - I've done my utmost to ensure all is above board and transparent, but I still feel like I'm waiting to see the headmaster!:rolleyes:

    Hopefully, my trepidation will be proved wrong - fingers crossed?
     
  9. Disgruntled Daughter

    Disgruntled Daughter Registered User

    Aug 29, 2019
    14
    Hi Philbo

    Is it vascular dementia? How old is your wife?

    I have been through exactly the same with my mother. Muscle wastage is a matter of days when they are hospitalised and they do not allow rehab with dementia.

    The hospitals want the bed, The social workers find that discharge with a standing hoist needs four double handed visits a day and so residential is cheaper.

    Every hospital admission is a huge setback for dementia sufferers who rely on familiar faces and places.

    If I had my time again I would go in all guns blazing, invoke the DOLs (Deprivation of Liberty) Safeguards,
    beg, steal or borrow to pay a private physio and get her home.

    There is nothing more undignified that relying on others for your bodily functions when you are not incontinent.
     
  10. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    My wife is 68 and has FTD (diagnosed in Jan 2014) and has been incontinent for several years. To be fair, her mobility had declined in recent months, but I could still get her around the house, up and down stairs (just) and down the pub (in and out of a taxi - bit hit and miss).

    Whilst the assessment unit she's in are often able to get her to stand and shuffle, depending on how "with it" she presents and to some extent, which staff are on. (it take at least 2 carers).

    An OT did another assessment the day before the Case Manager visited, so the decision that she needs supervised residential care included her findings.

    I was already preparing myself that it may not be much longer before such a move would be needed, it's just come as a shock that things have escalated so quickly. Thankfully, she is still the happy soul she's been throughout much of the last 5+ years.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    It was 5 years after diagnosis my husband started to lose his mobility @Philbo. I know it`s different for everyone but the comparison hit me as I was reading your post.

    My husband walked for two hours every day, come rain or shine, once he retired and mobility was the last thing I expected to go.
     
  12. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Quick update

    The SW was due to present my wife's case to the Adult Care "panel last Tuesday but due to the large number of submissions, it was delayed until yesterday (Fri). Her assigned SW was due to be on training, so she arranged for her manager to present the case. However, I will not find out the outcome (as to whether they agree to the care requirements etc) until Tuesday, as the SW doesn't work Mondays:rolleyes:.

    I sometimes wonder if they realise just how much this all messes with your brain? I realise that for them, it's just one in a huge number of cases being dealt with but I am in limbo land - worrying about the financial assessment and not really able to start looking at potential care homes until the "placement team" provide a list of those that they think can meet my wife's needs and accept LA contracts. (She is just below the maximum threshold, so at least the LA take responsibility for making all the arrangements, even though she will probably have to contribute until she reaches the lower threshold:().
     
  13. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    233
    If you dont mind my asking what are these thresholds? I thought it was 'self funding' down to 23k then LA takes over minus the PWDs income. Clearly I am wrong.
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,709
    Female
    South coast
    The upper threshold is indeed £23,000 and above this you will be slf funded, but below this limit the LA only starts to contribute towards the care. It is only once you get down to £14,00 that the LA will be paying up to their maximum so that the PWDs saving dont go down any further. Between these two thresholds the LA will be contributing and the PWD will still be paying some out of their savings. There is a sliding scale, so that the less there is in savings the more the LA contributes
     
  15. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Hi @Roseleigh

    My understanding is the same as @canary has explained. Until the finance team have carried out an assessment and the placement team have provided a list of potential care home places, I do not know how much my wife will be expected to contribute, on top of her state pension.

    As far as I am concerned, it's going to cost her £9k (from £23k to £14k) regardless, so it's just a matter of how long that takes.
     
  16. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    249
    Southampton
    Hi Philbo
    what a mess things have been for you and your wife. As someone who is just about to let my husband go to respite care for a week while I visit my family I really worry that something similar could happen. He is 84, has frontal lobe dementia, only diagnosed a year ago after four years of trying to get someone to listen. He recently had pneumonia and septic shock which has seriously set him back. He had deteriorated significantly while in hospital but has gone downhill even more since he's been home. I'm shocked at how rapidly it has happened. I'm seeing the GP tomorrow and intend telling her that I'm tearing my hair out with him at times now but I doubt she will have anything to offer. The guilt is killing me but I know I need the break.
     
  17. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Hi

    I didn't really feel guilty about arranging the original respite stay, as I really needed the break, plus my wife had a 9 day respite stay last summer in the same place and was absolutely fine.That was the first time I had had any respite in nearly 5 years (apart from her attending the day centre 1 day a week).

    Since it all took the dramatic downturn in these last 6 weeks, I have agonised over if I hadn't have arranged the respite, would she still be okay now? In truth, her mobility was declining anyway and I think that getting the UTI etc has accelerated the progression?

    I have always dreaded the inevitable (?) time coming when I would have to make the decision to seek full time residential care for her. The recent situation has at least taken that decision out of my hands, as the way she is now means that I can no longer care for her safely at home.

    I do hope that your respite goes okay for you and your husband and please don't feel guilty as you need to look after yourself too.
     
  18. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,702
    Kent
    Loss of mobility was the deciding factor for me too @Philbo.
     
  19. Philbo

    Philbo Registered User

    Feb 28, 2017
    705
    Male
    Kent
    Well, the SW rang today (at last) to say the assessment had made it through the panel and my wife has been judged to need a place in a nursing home.

    So I am now waiting to hear from the finance team:eek: and the placement team. The latter should be providing a list of suitable nursing homes that potentially have vacancies (tried searching for NH but you end up getting mainly care homes?).

    The SW said that she would keep my wife's case open for the next 6 weeks (in our area, you don't have a nominated SW but the Adult Care central hub allocate someone to deal with each issue as it occurs). She said that once a NH place has been found, agreed and taken up, then she will do another assessment after a month. CHC was mentioned as a possibility, but judging by the TP posts on this minefield, I am not getting my hopes up yet.

    Before the dementia, my wife had a 40+ year history of severe back problems, eventually being diagnosed with degenerative disc disease (though she struggled on any never claimed any benefits). So we could argue that her current severe lack of mobility is as much due to this, as apposed to the dementia?

    One step at a time, I guess.:confused:
     
  20. canary

    canary Registered User

    Feb 25, 2014
    10,709
    Female
    South coast
    A sad day @Philbo and lots of decisions still to make ((((((((((((((((hugs))))))))))
    You might not get the full CHC, but you might get the Funded Nursing Care element - every little helps.
     

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.