Advice re PWD in hospital

Discussion in 'I care for a person with dementia' started by Onlyme_, Feb 3, 2017.

  1. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    My mom has been admitted to hospital today following a fall - she is ok physically but paramedics were concerned about her level of confusion so took her to A&E. We are in the middle of getting a diagnosis at the moment- we've seen GP, mental health nurses, had blood tests and CT scan and were due to see a consultant at end Feb. We are in that awkward in between stage of coping at home / not quite bad enough for a care home; she currently has a carer come in at 11am and 5pm every day. She is going to be admitted to a ward soon and tests so far show she has low sodium, low potassium and a water infection which all need to be treated. Her confusion is off the scale today but I know it's worsened by the infection etc. I've had to suspend her care package and also cancel the mental health nurse visit which was due Monday. The hospital she is in seem very clear that they are treating the physical problems only (but know she cannot be discharged without care being in place). The mental health team say I should ask for her to be assessed by the RAID team at the current hospital. Does anyone have experience of this at all? I don't want her going home if she is going to struggle, even with a carer. Are there other options than 'bed blocking'? I will need to increase her care package before she goes home anyway as the morning call at 11 is not early enough and I think she may need 3 calls a day now. Thanks v much x
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    18,828
    Male
    North Manchester
    I think it's worth waiting a day or so when hopefully the UTI has been cleared and the electrolyte levels stabilised.

    I don't think the RAID team would do much until the current problems have been shown to be acute.

    On discharge there could be an option of between 2 to 6 weeks of free reablement to get her to the condition she was in before the fall, it is often in the home but can be residential.

    A problem is that the fall could well have been because of the UTI and more worryingly because of dehydration severe enough to affect electrolyte levels, some monitoring system to check electrolytes (blood test) should be put in place.
     
  3. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,717
    Male
    Bristol
    I have some experience of this recently, OH was discharged with a UTI too quickly to avoid bed blocking, though I'm not sure about that term.

    Two things I could recommend. First is to speak to hospital OTs. Our local hospital only let OH go home after a full assessment last time. Second may be to speak to either LA social services or hospital social services, both of which can take a bit longer.

    Local Carer support centre has a liaison officer at all the main Bristol hospitals and they have been a great source of advice and advocacy in the past. If you have anything like that in your area it's worth calling them.

    Just a few ideas for you onlyme, good luck sorting it all out.
     
  4. oilovlam

    oilovlam Registered User

    Aug 2, 2015
    388
    South East
    My mum didn't seem to do very well in hospital, kept falling. I think she wasn't drinking or eating properly. She had UTI at home and fell, breaking her hip.

    They said she was ready to leave after two weeks. But it took 5 weeks to get her home. I am 24-7 carer and still needed my brother for about a week (just in case). We also had reablement package.....twice a day (get up & put to bed).....but I thought they were more hassle than they were worth. They turn up at random times....sometimes after I had put her to bed for the night. Got rid of them after a week or two. Went back to my own care agency.

    We had to fight to get the reablement package. Initially the social worker (SW) said that I was self-funded and had to have four care visits a day (that we would have to pay for). Someone I knew told me about reablement and when I mentioned that to SW things ground to a halt...took 3 weeks of 'bed blocking' to get things 'ready'.

    There is also the option for a 'temporary' spell in a care/nursing home. This may be safer because they can build up the PWD and assess when they are ready to return home.
     
  5. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks for all your advice as always. Xx
     
  6. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Update and question about visiting PWD and dealing with requests to go home

    Well, after 5 long weeks my PWD, mom, is still in hospital. After about 2 1/2 weeks she was declared medically fit and moved to the specialist dementia unit at a rehabilitation hospital. We still have no formal diagnosis as the process was interrupted by the unexpected stay in hospital and resulting delirium / worsening in her condition, however the doctor at the current hospital says she is showing classic Alzheimers symptoms. Mom does not understand where she is (she thought she was at work yesterday and was asking anyone that looked at her if she could help them) and says she wants to go home, on a continuous loop - where's my coat and shoes, can you take me, I'll get the bus if you won't take me home, I can't stay here.... yesterday as we were leaving she was shouting that we had to let her leave and was trying to get out of the door with us. I normally try to change the subject or distract her but she wouldn't let it go yesterday. A nurse had to distract her while we made a run for it. It was awful.

    We saw the hospital social worker yesterday who seemed to be on a mission to get mom sent home with a full care package. Having seen the deterioration in her confusion and knowing how bad she was before the fall, hospital etc I cannot imagine how she would cope at home. And I cannot support her to the level she will no doubt require/demand (20-30 phone calls per day, being told to go round immediately, telling me she wants to die, etc). So we managed to steer things down the Enhanced Assessment Bed route - a temporary 4 week ish stay in a care home for further assessment and we are now waiting for the social worker to get in touch with details of care homes that are available and can meet her needs.

    Presumably during that stay in the care home, a new social worker will be involved about next steps, including the dreaded financial assessment, and it'll then be down to us to find somewhere more permanent.

    I must admit I'm struggling with how quickly things have deteriorated and still feel like a newbie in dealing with her. Other visitors at the hospital seem to have been dealing with dementia for years. I don't know where I'd be without the AS website and this forum.

    Anyway, with apologies for the rambling, I'm after some advice please about how to deal with the constant requests to go home. As I've said I've tried changing the subject and distracting her but sometimes it just doesn't work. I tried explaining that she isn't well and needs to be there to get better, we need to make sure she is safe and doesn't have lots of falls etc. The staff are lovely and do a great job in reassuring her, much better than me. And she doesn't now remember her home. She can't describe it at all, although she appears very 'with it' when she can recite her full address to anyone that asks! She also keeps asking me about her old homes from when she was a child and the house she had previously. Sometimes she evens tells me that her brain is foggy and she can't remember.

    Also tied up in this is the question about whether my visits actually help or whether they just cause stress. At the moment every time I leave, whether it's after 30 mins or 2 hours, she wants to put her coat on and come with me, and we have the same conversation. Sometimes I can calm her but usually one of the nurses has to help or take over. I've had her clutching my hand so hard I thought my finger had broken, staggering in front of me on her walking stick to block my way, waving the walking stick at me in an aggressive manner, shouting that she s being her against her will. My mom was never 'easy' to cope with but the dementia has just magnified it a thousand fold.

    I know these are normal problems and there are far worse things to come, and I'm sure others have experience and advice which can help me here. All advice and tips welcome. Many thanks x
     
  7. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,717
    Male
    Bristol
    Sorry Onlyme, I thought I could offer some advice but your mum is quite a handful. I recognise some of the clinginess from OH, but she is fairly easy going so patient reassurance usually.

    Anyway, I hope someone with more experience can offer better advice. You can't say they are just normal problems though, they sound like hard work to me. Best wishes to you.
     
  8. Witzend

    Witzend Registered User

    Aug 29, 2007
    4,293
    SW London
    #8 Witzend, Mar 11, 2017
    Last edited: Mar 11, 2017
    During her early days and weeks in the CH my mother would get very upset when I left, and want to come with me. Eventually I hit on saying I was just nipping to the shops or dry cleaners before they closed, or was off to pick Dh up from the station, etc. - 'But I'll be back very soon!'
    That seemed to work fine, and within a couple of minutes she would have forgotten that I'd been at all, as I knew already but had proof when I once nipped back after only a minute or two to fetch a cardi I'd left on a chair. (The CH was a bit like Kleptomania Central,sometimes - you didn't dare leave anything lying around!) She had no idea I'd only just been.

    Obviously this strategy will depend on very poor short term memory, but in that case it would be worth a try.
    Good luck.
    PS - forgot to add that even if it was nowhere near closing time I could still use that excuse, since by then she had no sense of time at all.
     
  9. Bod

    Bod Registered User

    Aug 30, 2013
    1,133
    #9 Bod, Mar 11, 2017
    Last edited: Mar 11, 2017

    Requests to go "home".
    Don't visit so often. Phone the staff to enquire, but going is just upsetting you both.
    When she moves to the new unit, take staff advice regarding when to visit, probably not for the first 2 weeks, till she starts to settle.
    Financial assessment.
    Does she have more than £23500 in assets? (Cash/savings/property etc.)
    Yes, then she'll pay all.
    No, then she might be asked to pay some.
    Should she own a house, then who is living there with her might have some bearing, but this needs checking. There are rules for this.

    Bod
    ps
    We've refused a financial assessment as we know we don't qualify. Should you refuse the LA assumes you will pay all costs, so if you are certain of your position, then don't have one done.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,738
    Yorkshire
    hi Onlyme_
    well done on pushing for a stay in a care home - do ask that this is a re-ablement package as I believe that those are free eg dad came home from a hospital stay with a 6 week re-ablement home care package in place, so he only started to pay for care after that 6 weeks
    any requests to go home answer every time with a stock reply you decide on eg the doctor needs you to recuperate so we have to wait for them to decide - don't change the reply, don't explain or reason, just say the same every time and then change the subject, distract, walk away ... don't engage in that conversation
    like Bod, when I leave my dad I never say I'm going home, I tell him I'm off to do some shopping and even ask if there's anything he'd like or if he's on a confused day, I tell him I'll buy some of his favourite choccy biscuits - I have also said I need the loo or need to fetch something from somewhere or have a chat with the carer or ... anything that gets me out of his sight, then I tell the carers I'm going and leave - it helps if you can hide coats or even bags, so you aren't bundling them up when you want to go, as this is a signal; if you're apparently only in indoor clothing it is less obvious that you aren't staying there with her - maybe leave when she's to have a meal/cuppa so there's an immediate positive distraction
    I do know how horrible it is to have your parent shouting for you and at you - I've had to make a few hasty retreats - I know the staff will calm dad and that he does settle after I've gone, which is a comfort - just, sadly, sometimes the sight of me does make him think he's coming away with me, so it is best for him that I am not there as nothing I say or do will lessen the fixation
    I notice you say
    so don't be worried about letting them support your mum - it's often easier for those with no emotional ties and in a uniform
    best wishes
     
  11. Primrose19

    Primrose19 Registered User

    Nov 27, 2016
    55
    Female
    Dear Only me

    Sounds just like my mum in September - 4 weeks in hospital, always wanting to go home, really cross with us. Packing bags every day etc. We kept saying you're in hospital but she never really grasped it. We thought how will she ever stay in a home which it is far more difficult to justify than a hospital.

    We thought the powers-that-be were wanting to send her home but after more assessments, they recommended residential care so then we had to find somewhere asap.

    So the first couple of weeks in the home were bad, she would shout at us, slam the phone down, tell us to go away and shake her fist at us through the window. I was in despair and posted here and several kind replies said give it time. And amazingly she calmed down, seems to think it is a hotel or holiday apartments and has settled in.

    Now we just feel guilty that she looks so well, much better than when she was at home not eating and drinking properly, but probably doesn't have enough people to talk to or things to do all day. Can't win really!!
     
  12. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks - all great suggestions! I feel like I'm learning a whole new language :)
     
  13. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks Bod, really helpful. Is there any benefit in having a financial assessment if I know we'll be self funding? I'm thinking we may need to use the deferred payments option (where they take a charge on the property) to pay for care until the house sells so would we have to have a financial assessment to do that, do you know? I'm also still mulling over whether there's any benefit in renting the house out to get the income. Too much to think about!
     
  14. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks Shedrech. I will mention the reablement package next time I speak to the social worker. I'd read about it somewhere else on the forum but I was so wound up about making sure mom wasn't going to be sent home that I forgot to ask about it!
     
  15. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks Primrose19 - that's comforting to know. I'm quite sure we won't have an easy ride but hopefully with time things will settle.
     
  16. Clueless2

    Clueless2 Registered User

    May 14, 2015
    34
    Re renting the house out

    We decided to rent my mums house out, because fortunately the rental pays a good 2/3rds of the monthly care home fees. However it is still early days for us, and I suspect that by the time I have done the annual rental account (costs re insurance, electrical and gas safety checks, repairs, agents fee, income tax....) that will fall to ar best 1/2.

    If we had sold the house, there was the tricky matter of where would we have safely invested the proceeds to achieve the same monthly "interest"?!

    We are hopeful that at least the house should still slowly increase in capital value whilst paying something towards mums care. We are fortunate that she has some savings, state pension and Attendance allowance to make up the shortfall each month.

    Another practicality to bear in mind is that the property might be empty some months, between tenants, during refurbishment etc.

    I could not imagine my mum being as settled and content in a care home as she is 18 months on. In her pre dementia life it would have been her idea of a nightmare, and was her greatest fear. The reality is that for her at this stage she has more company and stimulation than in her own home. The staff are rested, re energised and not exhausted due to 24/7 caring.

    Good luck Onlyme, you are doing a great job supporting, researching and making considered decisions for your mum.
     
  17. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    31
    West Mids, UK
    Thanks Clueless2, you certainly don't sound clueless! Useful info and I've added your points to my pile of things to consider.
     

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