1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Today did NOT go to plan!

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  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Oh dear! Sorry to hear that. Do you want to share here?
  3. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    Hope you're ok mammamu?
  4. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    #4 Mammamu, Jan 19, 2017
    Last edited: Jan 19, 2017
    So I'm [emoji35].....

    Well apparently FIL has not got needs for that or a nursing home[emoji35] and they could not take him because of his verbal aggression....

    I believed changes in behaviour was "normal" in people with dementia & very common?
    Anyone can HELP or give advice what to do next?
    (We already met with the manager of the nursing home & she saw no reason for FIL to move in. She did not do the assessment...)
    Where can I go to challenge this decision. To angry to [emoji24].....

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  5. Aisling

    Aisling Registered User

    Dec 5, 2015
    Lord help you. Am in a similar situation re behaviour. Yes changes in behaviour are common. It has taken me forever to get this point across to some professionals? Has FIL had an assessment of her needs? Can you contact an admiral nurse? Did manager give you reasons for her opinion? Can she suggest another NH?

    You will get huge support here.

    Aisling ( Ireland)
  6. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    So here we go: It has been agreed that FIL needs to move,
    But because of his verbal aggression and mental illness where?
    Its a conundrum.....
    I have spoken to the nursing home and understanding better why he did not get accepted, still not sure I agree with it...... who's going to accepted him?
    He has care needs,but apparently not nursing need? This is confusing for me?
    I'm my world if you need help with everything from getting up to going to bed (& hopefully stay in it!!) you have needs.
    If I get help with all of it, I can some days manage to do "a lot ".
    Than the next day, I don't want to do anything..... so on that day my need for care is high,double or maybe even triple?
    If I don't have that high care all the time my "a lot" days will be fewer and fewer. Until one day I don't need any care.
    I don't want it to be too late for my FIL to have some "a lot" days.....
    If the place is called: care, nursing or home I could not give a .... as long as care needs are met call it a giraffe for all I care.

    Sorry for rant. No rest for the wicked time for mammamu's taxi service,followed with butler service...


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  7. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    A care home has said they cannot offer the level of care your FIL needs and the nursing home say he is not ready for nursing care at the moment. Unfortunately care homes and nursing homes can refuse if they say they cannot give the care or their care is not necessary.

    There are care homes that will be able to cover difficult or challenging behaviour with dementia. They are called EMI care homes. If you 'google' EMI care homes in your area you will find a list. Ask your Local Authority or Social Worker to supply you with a list too.
    Check they accept dementia and challenging behaviour. We found some homes said challenging behaviour but it was for adults with learning difficulties not dementia.

    It's not easy I wish you luck in sorting something that will benefit you and your FIL
  8. canary

    canary Registered User

    Feb 25, 2014
    South coast
    I agree with Jaymor. Mum is in a dedicated dementia home and they are able to tolerate verbal aggression and know how to distract people. If someone with dementia is in an ordinary care home then the CH is usually not able to cope with typical dementia symptoms like aggression, wandering and going into peoples rooms. Sometimes so-called dementia units only accept people with mild dementia too, unfortunately.

    If the behaviour gets too challenging for even a dedicated dementia (EMI) unit, then you are looking at a dementia nursing home. This is not the same as an ordinary nursing home where they deal with nursing needs of people with physical disabilities (is this the sort of nursing home that came to assess him?) as dementia nursing homes are staffed by people who are trained to deal with challenging behaviour caused by dementia.

    Do not worry, you will find somewhere. When you contact a care/nursing home it is always a good idea to ask what sort of behaviour they would not be able to deal with.
  9. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Here is an update from me and my little world.....

    Hi all,
    Firstly THANKS a million for comments, suggestions & support!!!

    I took the advice from crazyweather;Stay calm;)
    And after thinking about what you asked: Now that the CH Manager has said that they don't want your PWD because of verbal aggression would you actually want them to be cared for in this home?
    No I / we don’t.
    You have to forgive me I’m new to the “care-home” setup and did not have a clue or understanding of it at all until Sep 2016,(so I’m still in my crawling stage!)
    Naively I thought that SS would have explained it all to us from the start, I can now with hindsight see that thats not what happened in our case....

    Following a long chat with FIL’s GP, she also expressed her view of the total luck of consistency from SS and she told me that the SW had said: SS have offered them 4 possible places but they have refused them ALL!
    Well not strictly the truth this is the email from the SW:
    We have 4 potential offers at present,
    Offer 1 means you will be required to make a top up as it is well above our commissioned beds. I am aware that you indicated that you are not in a position to top up. (SO WHY is this offered to us?)
    Offer 2 & 3 It is unlikely you will consider because both are shared rooms.
    Offer 4 they refused him.

    Now forgive me for not understanding the system but it cant be an offer if its not meeting any of his needs or can it?:confused:

    I have also had a nice long chat with an admiral nurse.We have had a look at local EMI/dedicated dementia home find a few, that would work for us however its if a block bed is free....

    I’m slowly learning the process, but each time I feel I know it, another “hoop is popping up”!

    I don’t mind blunt advice or comments, it kind of works better than fobbing me off with big words and long explanations! So no need to apologize for being blunt anymore.

    Without the help and support on here I would have been crying & shouting a lot over the past 24 hours. Instead I have looked after my kids, sorted out home help for MIL, that's a miracle!! (hoping I can get some more Me-time,very selfish I know!)
    So even if the road ahead is rocky and unknown I feel its going to be ok I will carefully pick my fights and save the energy for the time when its needed. Its a long steep learning curve .
    Wishing you all some happiness and smiles for the weekend!
  10. Onlyme_

    Onlyme_ Registered User

    Dec 28, 2016
    West Mids, UK
    Wanting me-time is not selfish at all. It's essential. As I am finding out. If you are not looking after yourself then you cannot be there for the PWD. Good luck.

  11. dottyd

    dottyd Registered User

    Jan 22, 2011
    #11 dottyd, Jan 22, 2017
    Last edited: Jan 22, 2017
    Has he had a dst meeting.
    My mum was aggressive and the ch did not want her.
    She triggered a dst meeting.
    Best thing ever.
    She was awarded chc funding.
    I went out of town and found a smashing place run by mental health nurses. That's very important.

    If you haven't had one.
    Demand one.

    Please look at the prof Luke Clements video on social care. It's excellent.
    If a ch doesn't want him because he's become too difficult too handle then the NHS should pick up the bill for a nh. End of

    Be sure to know your rights. A well managed need is still a need. They aren't managing his so he needs to go somewhere that will.
  12. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Thanks Onlyme!!!

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  13. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Thanks Onlyme!!!
  14. Slugsta

    Slugsta Registered User

    I totally agree that me-time is essential, not a luxury, and it is certainly not selfish to want/need some!

    I do hope that you are able to find somewhere appropriate for your FIL very soon.
  15. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Hi Dottyd,
    Thanks for the advice!
    I have been asking for it, 1st time in October.....
    I'm planning a long e-mail to SW tomorrow, so I will mention it again and see what she comes up with this time???

    It's a little complicated as his wife can't travel for longer than 30 min. max in a car.....
    On a happy note FIL is 93 tomorrow[emoji512]. Had a nice day with him today,we all went to the pub for a Sunday lunch. It was lovely to see him interacting with my daughter[emoji4].
    Hoping and praying that we all have a good & productive week[emoji1317][emoji1303]


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  16. Mammamu

    Mammamu Registered User

    Jan 10, 2017
    Thank you [emoji4]!

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  17. dottyd

    dottyd Registered User

    Jan 22, 2011
    If the are asking for a top up then insist on a meeting.
    Because if he scores high or severe in the behaviour section, cognition etc then he should be liable for chc and you can pick a home of your choice.
    At 93 I would be surprised if he didn't score high in most categories
    At this stage of the game he needs the best placement for him.
    I had to go ou of town for my mum.
    It was a good move. She settled well.
    You must, must, must watch the Luke Clements video. You have too much riding on this.

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