Discharge from hospital meeting

Discussion in 'I care for a person with dementia' started by fredsnail, Oct 30, 2015.

  1. fredsnail

    fredsnail Registered User

    Dec 21, 2008
    649
    Hi - sorry I'm back and looking for advice from people who've got experience.

    Mum is currently in hospital and has been for 3 weeks, we've been invited to a meeting on Monday to discuss future plans for her, along with everyone involved including her. She doesn't have dementia but is terminally ill and prior to admission to hospital we have had no support but things have been getting harder for her - she is fully aware and capable of making her own decisions.

    Since being in hospital she has to be hoisted and when in bed has to be turned every 2 hours as her skin has broken down and she has bed sores - her mobility won't improve as this is a part of her deterioration due to her illness. She has told me that each time they turn her at night she has a bedpan which she fills each time but occasionally she over fills or it spills so often they have to change the bedding

    When she first went into hospital we were told that she'd have 4 carer visits with 2 carers each time, however the doctor told her on Wednesday that she will probably need more care than that and they would be unable to provide more as that is the maximum package they supply. The consultant saw her on Thursday and seemed more positive that she could come home as she doesn't live alone. He also suggested a catheter with a view to it becoming a permanent catheter which Mum wasn't keen on (the doctor on Wednesday had said they didn't want do that as it would increase the risk of infection).

    Mum lives with me (just the 2 of us, though my brother who lives a few hundred miles away visits regularly). I work full time - but my employers are very supportive and are allowing me to work from home to care for her but I will have to go into the office every now and again. We currently have no equipment such as hospital bed, hoist etc but the occupational therapist is due to visit the house for an assessment early on Monday to give her recommendation to the meeting.

    We've been told that the meeting on Monday will be the opportunity to ask any questions.

    We are unaware of what the alternative will be if Mum is unable to come home, or if she comes home and we are unable to cope so that is one question we want to ask.

    My question is what else should we be asking? When Grandad had dementia we never had any of these meetings so am unsure what we should be asking or expecting - can anyone please advise?
     
  2. susy

    susy Registered User

    Jul 29, 2013
    801
    North East
    It sounds like it will actually end up being up to you. The meeting will assess if you are willing and able to look after her at home.
    The reality of the situation is that she has sores and needs intimate care, even if she has a catheter. She will need 2 hourly turns throughout the day and the night. You can have carers come and help 4 times a day but that is it.
    I think you need to hear the brutal truth about her condition. Is she likely to get any better or worse?
    The alternative is for her to go to a home, one that you chose, that you can visit everyday but one who have staff there who manage to be away from caring for hours and rest.
    You need to be realistic and find out exactly what will be expected of you if she comes home. It's not fair to either of you to say yes you will care for her if you can't do it and maintain it for the rest of her life.
    In the other hand, things do move on and things are not set in stone so if she did come home, she can always go in to a home if you can't cope. However that isn't a quick solution and you don't have the luxury of finding the best place when in a crisis.
    Lots for you to mull over and think about. I hope this helps you reflect on what you need. Best wishes to you and your mum x
     
  3. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    515
    My Mum came home from hospital after a spinal injury and has very little function from the waist downwards. She had to go to a care home for six months until my dad could get the house sorted and now has two carers four times a day with my dad doing night care. She has a catheter (when it will stay in - all sorts of problems with that).

    They have a bungalow but they insisted she needed the bathroom converted to a wet room, a hospital bed, a portable hoist and wheelchair access into the house.

    Even with all that care my dad does all the shopping and cooking, cleaning (well, sort of, that's another story), paperwork and form filling, takes her to hospital appointments. He's an intelligent man but its been a lot for him to cope with.

    How would you cope with turning her every two hours? I work from home so I know what that's like - there is no way I could work full time hours and look after someone at home.

    To be honest I don't think you can look after her at home and you should be thinking about a care home. All best wishes to you both, and I hope you manage to find the best care for your Mum.
     
  4. fredsnail

    fredsnail Registered User

    Dec 21, 2008
    649
    Thank you both for your replies.

    Mum has aggressive cancer so will not get better - obviously my heart says yes I'll do anything to get her home for however long she has left, but my head is saying can I really cope with everything.

    She thinks that if she doesn't come home she'll stay in hospital permanently, but my brother and I think that it'll be a care home as she's receiving little if any medical treatment at the moment.

    Turning her every 2 hours will be tiring as it will have to continue during the night so I'll have continual broken sleep and trying to work full time from home (I can't afford to reduce my hours or stop working) along with cleaning, shopping and washing will be hard.
     
  5. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,942
    North East England
    I think that I'd be looking at finding a caring Care Home where Mum can be looked after 24/7 and you can spend quality time with her while running your life and managing to get sufficient sleep.
    My Mum had Mixed D and cancer. Her cancer, while devouring her from the inside, luckily did not cause her much pain or distress and her carers in the home could not do enough for her, including sppon feeing her boiled eggs in the middle of the night if that was what she fancied.
    Looking after Mum at home and working and running a house....there are not enough hours in the day for quality time. Be kind to yourself.x.
     
  6. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,088
    Yorkshire
    Hi fredsnail
    I hope the meeting gives you lots of information and a chance to ask questions and air your views so that you can all find the best solution together.
    From what and how you have written I infer that overall you are very concerned that you will not cope with your mum's night-time and future needs and hold down your job. Personally, I do agree with cragmaid and others, you count in all this and if you have any doubts, then the best for your mum is to be in a care home where she will receive all the attention she needs AND your loving visits, during which you will be awake and able to enjoy her company (and hopefully she can relax knowing you are looking after yourself).
    My one worry - sorry to raise this - how will you deal with discovering that your mum wants to come home when you are feeling that this would not be for the best? Will you be able to gently but firmly veto this (I'm thinking that your brother will back you up?)?
    Thinking of you!
     
  7. Beate

    Beate Registered User

    May 21, 2014
    11,740
    Female
    London
    Whatever you do, don't let them bully you into taking her home. Don't say things like "I can probably do this" until you are absolutely 100% certain that you really thought about all the implications and can do this. Even then, insist on the maximum of help. Don't let them hurry you into a decision. Have the care home route explored. They need to know they are not dealing with a pushover. Communicate all your concerns clearly.

    Btw, catheters really aren't a very good idea as they indeed increase the risk of infection. OH is incontinent but I would not agree to this.
     
  8. nitram

    nitram Registered User

    Apr 6, 2011
    19,244
    Male
    North Manchester
    #8 nitram, Oct 31, 2015
    Last edited: Oct 31, 2015
    Insist on a formal >>>CHECKLIST<<<

    This has three possible outcomes:-

    ● No NHS assistance on discharge.
    ● Award of FNC (Funded Nursing Care) - fixed amount paid to nursing home, not available for care at home.
    ● Award of CHC (Continuing Health Care) - variable amount based on assessed medical needs, payable in a nursing home or for care at home.

    As you mentioned that your Mum was terminally ill is is possible that a >>>Fast Track Application<<< may be appropriate.
    For fast track an Appropriate Clinician (normally a doctor) has to sign

    The individual fulfils the following criterion:
    He or she has a rapidly deteriorating condition and the condition may be entering a terminal phase. For the purposes of Fast Track eligibility this constitutes a primary health need. No other test is required.


    CHC should be granted by the CCG (Clinical Commissioning Group) on receipt of the document.

    If you haven't already done so have a read through >>>CHC (Continuing Healthcare) support thread<<<

    There is also a completely separate 6 week Reablement Period during which free residential care or assistance with care at home can be provided.
     
  9. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,953
    Is hospice care one of the alternatives that might be considered please? Your Mum may be too well for hospice care just yet ... but if she isn't, then please do investigate it.
     
  10. fredsnail

    fredsnail Registered User

    Dec 21, 2008
    649
    Thank you again for your replies.

    I don't think Mum is yet poorly enough for hospice care and there is only one 5 bed hospice in the county.

    I will read through the chc document properly tonight though I think she scores maybe 2 A's another rest C's but it is something else to think of.

    I think the main problem is that we've had buts of information and some of it conflicting but feel we are expected to decide. I think we'll treat the meeting on Monday as an information meeting and tell them we need time to think and make a decision.

    Thanks again.
     
  11. arielsmelody

    arielsmelody Registered User

    Jul 16, 2015
    515
    I'm very worried about you trying to do too much. If she needs turning every two hours, even with an air flow mattress, there is no way you can look after her on your own every night and work full time. I worked from home when my children were babies/toddlers and I know it's true! Everybody needs to sleep sometime, and if you haven't slept you won't be able to work, and then there's all the house work etc etc to do on top of that.

    I think it's quite a clear choice from that point of view - if you are looking after her at home, unless you are getting help with the night time care, you can't work during the day and you will need to take leave from your job. Even with help at night you should think about going to reduced hours.

    It sounds quite harsh written down, but I'm worried that you shouldn't offer to do too much, and either lose your job or find that you are left totally exhausted and ill, and your mum has to go into a home anyway.
     
  12. nitram

    nitram Registered User

    Apr 6, 2011
    19,244
    Male
    North Manchester
    "I will read through the chc document properly tonight though I think she scores maybe 2 A's another rest C's but it is something else to think of."

    You have said:-

    She doesn't have dementia but is terminally ill...

    ...Mum has aggressive cancer so will not get better


    In which case do not dismiss Fast Track
    From my experience
    http://forum.alzheimers.org.uk/show...pport-thread&p=1184161&viewfull=1#post1184161
    it maybe that approaching her GP would be a good idea.
    You may have to wait until she has been discharged for the GP to be able to sign but there is no harm in sounding him/her out now.
     
  13. fredsnail

    fredsnail Registered User

    Dec 21, 2008
    649
    Thank you nitram - I will certainly raise it due to information we've been told this afternoon.

    We've spoken to the nurse this afternoon privately and explained our concerns - she said that these were the concerns that the doctor and occupational therapist are also raising. She said she will make some notes about our discussion to pass on to the people at the meeting - with the clear instruction that our concerns are not to be mentioned to Mum under any circumstances, and that any decision/advice not to send her home will be the decision of the professionals not us. The nurse thought that they were going to advise Mum not going home anyway but she was glad that we were putting Mum's interests first.

    It has been a very difficult decision to make but my brother and I feel it is the best one for all of us. We don't know what will happen yet - but we want to make the most of our precious time left.

    Hopefully all will go ok on Monday and although it may not be what we want to hear, it will be the best decision.

    Thanks to everyone for their posts and taking the time to read my post - it has been helpful just to confirm that I'm not being selfish and it's ok to say no.
     

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