Sorry Another Plea for Help

Discussion in 'I care for a person with dementia' started by Crag, Jan 26, 2016.

  1. Crag

    Crag Registered User

    Jan 3, 2015
    76
    As some of you may recall Dad has Alzheimers and has been in hospital for over a week now having a cancer lump removed, having most of his ear and some of his side burns cut away, and a graft that looks like a large raw chicken breast stapled to the side of his face.

    The hospital have just rang to say they want to discharge Dad so he is in familiar surroundings asap, but as he's been in hospital he's totally lost to where he is.

    I'm unsure as to how mum and me will initially cope, as soon as he is home, ie he has a large stitched cut on the throat, that he could do a lot of damage to if he sneaks off for a shave etc.

    The hospital say they have notified social services that we may need help. Mum's on her way to the local Azlzheimers Society office as she's in a panic like I am on what to do.

    I don't know if any of you have been through something like this and have experience, or if it's just a case of riding the storm till we get sorted
     
  2. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    When OH was readmitted 6 hours after discharge a couple of years ago I got hold of the Carer Liaison Officer at the hospital who arranged a meeting with a nurse to make sure that never happened again. Before discharge the second time I made sure I spoke to the junior doctor in charge and eventually the Consultant did manage a quick word, the Hospital Social Services worker, the pharmacy and the senior nurse on the shift that day.

    Make sure you get a meeting with as many people as you can, hopefully the Alzheimers Society can help if you don't have a carers liaison. I would certainly emphasise to the consultant if you can that you do not wish your dad to be discharged before a care plan is in place. I can't believe they would do it any other way in the circumstances, howver short of beds they are.

    That's the best I can advise in the meantime Crag, so will just wish you luck and hope someone else can give better advice.
     
  3. Crag

    Crag Registered User

    Jan 3, 2015
    76
    Thank you for this. I will get onto this now.
     
  4. AnneED

    AnneED Registered User

    Feb 19, 2012
    81
    East Yorkshire UK
    Yes, you can refuse discharge for as long as there is no suitable care, but also many hospitals and social care teams arrange emergency rehab care for people going home, often free, often intensive but often time limited (6 weeks or whatever) Definitely worth looking into.
     
  5. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    Surely the hospital can't discharge him just like that. Talk to them and tell tell he can't go home yet.

    Aisling (Ireland)
     
  6. Mrsbusy

    Mrsbusy Registered User

    Aug 15, 2015
    356
    Having had a skin graft myself, personally I would insist he stays with them until it's recovered properly, as most skin grafts become infected, and plastic surgery, which he has had with a skin graft is a very specialist after care. They probably want the bed which is understandable but you have to insist he isn't well enough to go yet.

    When he does come home try and get him to eat eat green veg and nuts in his diet as it helps the skin to recover.
     
  7. chrissie121

    chrissie121 Registered User

    Nov 27, 2013
    29
    Speak to Social Services in the Hospital

    Ask to speak to Social Services in the hospital, they have a department. Tell them you don't think you need help but your mother will not be able to cope and you need carers to come in. When you speak to the Social Services team tell them he has alzheimers, not just cancer and he wanders and cannot be left alone. Be strong and insist your mother can't have him at home until you have a care package in place.
     
  8. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    I would be in a total panic. I don't have any suggestions, not knowing your systems in place there, but this doesn't sound feasible. You and he will need lots of help. And the risk of infection is too great.
     
  9. Crag

    Crag Registered User

    Jan 3, 2015
    76
    Thanks for the help with this. Just a quick update as I haven't heard back from Mum yet (I'm at work, but on call if she needs me).
    She has somebody from the Alzheimer's Society helping her now, and following advice on here, I've passed a message onto her to speak with Social Services at the hospital and the liason officer, if only to calm her down a bit.

    They reckon they want him in familiar surroundings asap to help with his confusion. As you may see from my previous call for help, looking after him is too much trouble.

    I'll report back when I hear what's gone on today. Most people look forward to going home after work, but I dread it at the moment not knowing what I'll be hit with next.

    Thank you for the support
     
  10. CJinUSA

    CJinUSA Registered User

    Jan 20, 2014
    1,125
    eastern USA
    O my. Good luck to you. I can't imagine what it would be like for your mother with him home. I hope this can be handled smoothly, and with his best interests and yours too.
     
  11. Crag

    Crag Registered User

    Jan 3, 2015
    76
    We have been informed Dad can't be discharged until he has an assessment, with either Mum, myself, or both present, and we had a choice of putting him in care for up to 6 weeks or bring him home, and have someone come in up to 4 times a day.
    We are opting for the latter as I think if he goes into the type of home they describe he won't be coming home to us again. So after the assessment we will then have to wait till what home help Social Services can offer, and see how we go. If then it becomes too much, then he will have to go into care, and I think Mum is starting to accept that. Thankfully this has calmed Mum a bit, as I had visions of her going into hospital with the worry she's carrying, and probably taking me in with her.

    Dad was the calmest I have seen him since he's been in hospital, but felt sorry for him as he looked so bored. I did go through a photo album with him, and will try him with dominoes tonight. He did keep saying "well lets get going then", but never once attempted to leave his room.
    There's still quite a bit of blood around the back of what's left of his ear that would worry me about contacting an infection if he were to come out, and now it's starting to heal it's itching.

    Will see what tonight brings
     
  12. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    Sounds more positive Crag. Good to hear you have a proper discharge meeting and a care plan on the table.

    Though, you may want to make sure Social Services send round dementia trained carers and your mum might have to be there when they call the first few times. Sorry to put a few negatives in your potentially good news, we had some stress with care agencies to start with, which required a few phone calls to Social Services and to the care agency to sort out.

    Good luck and best wishes to you and your family, Rob
     
  13. Crag

    Crag Registered User

    Jan 3, 2015
    76
    Well it just gets more and more tricky. Dad was discharged on Tuesday with a trial of having him back home with supposedly 4 care visits a day, but it failed miserably, probably partly to do with us waiting around for the carers to show up.
    They tokld us they'd be there at 11-30am with his lunch, but their first call was 6-30pm, and they didn't know what to do then.
    To cut a long story shorter, I got dad to bed at 10pm, only for him to get up at midnight, and he was down in the kitchen trying to hang cakes on the wall with bent paper clips, spreading the rubbish bin over the kitchen floor, trying to punch nails and screws into things.
    I tried for a while to get him back to planet earth but conceded after an hour before calling the ambulance. I spent from 3am until 5-30pm in A&E with him, before they found a bed in the hospital. I did get him to have a nap at 4-30pm, but he went and woke up in a dark lift as we were taking him up to the ward, so you can imagine what I had to endure then. I ended up having to restrain him as the nurses was in a panic, which only makes someone with Alzheimers worse.

    I was so unhappy with staff on the ward, and the way they were reacting. If only they had listened, it would have helped calm Dad.
    The following day Mum had gone to visit Dad, and was told by the staff on the ward they want him out asap as they could not cope with him, and the Social Services within the hospital gave us 2 care homes to go and look at, so again I've had to have more time off work, and to get round the city in rush hour is not my cup of tea.
    The first home was Ok, the nurse there said they would have to move a patient down stairs to cater for dad. So with tha we went to look at the second, which was awkwardly located for mum to get to.
    On arriving home Mum rang the hospital to let them know we found a home, and to ring the home to ask to reserve the bed, but we couldn't get through to either.
    I had dinner and a shower, prior to going to the hospital, only to get a call from Mum to say she has now been able to inform the hopsital, but was told by the home that there was no beds available there.
    By this point I'm about to kill somebody, I'm tired and confused. I don't know what my 78 year old Mum, or anybody elses parent, would be able to do in this situation without help from a family member.
    The only good thing from the hospital visit is I saw my dad calm again, and the staff were 110% better with Dad, and from the notes in his records, they were better dealing with him in the day when he was confused.

    Now I don't know what to do but feel I need to speak to the Alzheimers Society, Social Services before I go any further. I've told Mum we are not rushing round doing ourselves in, chasing lost causes. I just don't know where to start.
    Fortuantely I finish work at lunchtime so will try and get my head together then and hopefully make some progress
     
  14. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    6,106
    Male
    Bristol
    No wonder you are tired and angry Crag. I can't believe the nurse was not trained in caring for someone with dementia, but it was good news that the day shift were better.

    Good luck with Social Services and the Alz Society, hopefully they can get your dad into the right nursing home if you explain the situation and don't allow anyone to fob you off.

    Best wishes to you and your parents, R
     
  15. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    #15 Shedrech, Feb 12, 2016
    Last edited: Feb 12, 2016
    Hi Crag
    what a right old pickle
    Are you and your mum now convinced that a care home placement is best for your dad - as I think you were hoping to have him home again? The night time behaviour you describe would certainly make me think that it is. Such a shame the care package didn't start properly - but maybe a blessing in disguise?

    I'm not sure how much help you will be able to get from SS or the AS - I found that I was given plenty of leaflets but that the leg work was down to me - at least you now have time to look at a few more homes

    I'm sorry, I can't remember, but I guess your dad will be self funding - that does give you more choice about where to place him, which is good, but doesn't, unfortunately, make it any easier to find somewhere.

    I'll stop, as I'm not being helpful really
    All your hard work and stress will be worth it when you find the right place for your dad, then you and your mum will be able to relax somewhat
    very best wishes to you all
     
  16. Crag

    Crag Registered User

    Jan 3, 2015
    76
    #16 Crag, Feb 12, 2016
    Last edited: Feb 12, 2016
    Thanks for the replies. If I knew what to do I'd be fine. If they said go and look at some care homes when he was re-admitted we'd have gone ahead and done so in a better manner. But because the way they came across to Mum it seemed it was an emergency, and caused Mum to panic, and the way things are going I'll lose both parents if it carries on like this.
    I don't know whether I should be filling in a section 4 or 3 form as since he is a danger to himself and others with his various antics, ie not switching the gas fire on correctly and in doing so filling the lounge with gas. He was always doing odd diy jobs so is trying to do the same now and causing chaos. He can't be left alone. Mum used to have to take him to garden centres etc to occupy him.

    I believe from the interim assessment from 10 days ago, we have 6 weeks CHC funding to be reviewed in 3 months. Does this sound correct?
    It also sounded like they were going to home him, so our plan was for that to be sorted and we'd look at homes for after that, but it also seems that there only a limited number of homes that can deal with the likes of my Dad. And it's these things and others we need clarifying so I can learn what to do next.
    I'm trying to stop mum thinking and worrying about all that's gone wrong and to learn from it and concentrate on the questions we need to be asking and what we need to do. I don't know how someone like my mum could deal with this without help. She's by no means frail, so seems to be used because of her appearance

    I do hope from my experiences that others can learn something too, in case they get caught in a similar situation.




    Sent from my iPhone using Talking Point
     
  17. Crag

    Crag Registered User

    Jan 3, 2015
    76
    After a number of phone calls it seems a lot of it is down to no communications from CHC. It's a bit sad when even the dementia team at the hospital can't get hold of them.



    Sent from my iPhone using Talking Point
     
  18. jasmineflower

    jasmineflower Registered User

    Aug 27, 2012
    335
    What a nightmare! Try not to panic. They can't just turn your father out onto the streets. Just be firm and refuse to buckle to pressure until you have found the right place. As you can see, not even the CHC team are making things easy.

    I realise location is a bit of a lottery, but when we were in a similar situation we turned to our local Alzheimer's Society and the support worker there was amazing - she took the whole situation on board, gave us a shortlist of homes that could meet my MIL's needs, contacted them to see which had spaces and even contacted the right people to put in place 24hr 1:1 care to ensure my MiL's safety until she could be moved. So definitely worth contacting them. They might just turn up trumps.
    J x
     
  19. Crag

    Crag Registered User

    Jan 3, 2015
    76
    Dementia team went to see Dad in the ward whilst Mum was visiting. He now has to have an ultrasound on Monday, which buys me a weekend to get some thinking done. But at the same time I'll be feeling I've hit a brick wall till then, with not being able to make any progress

    I don't whether it's a ggod or bad thing, but dementia team have given mum hope that it may be an infection he has got and he may be ok at home if the carers put a proper plan together on what they are supposed to be doing.
    I'm not too comfortable with this but am prepared to give it another try, but then I'm not to comfortable with putting into care at the rate of knots we have had to move this week.
     
  20. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    8,093
    Yorkshire
    Hi Crag
    it's all a bit up in the air isn't it!
    In my opinion - do what YOU and YOUR MUM feel comfortable with
    You're learning some of the pitfalls and some of the positives and probably now have a little more of an idea of how things work - even if you don't feel all that confident; not sure we ever do
    if something doesn't work out at least YOU will know that you tried and can look for another way through with a clear conscience
    Personally I'd look at as many care homes as I could get round (that's what I did) - so that you have a good impression of what is out there and what you are wanting for your dad (but don't be fooled by swish looks; it's the care that counts so watch carefully how the staff interact with the residents)
    And put your dad's name down on the waiting list of any you are interested in - if you decide to care for him at home and feel it's not yet time for a care home placement, then you can just tell them that if you are offered a place, they don't penalise you

    Hang on in there - you're doing a grand job for your parents
     

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