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.

time to admit and accept a move is necessary

Discussion in 'Middle - later stages of dementia' started by Shedrech, Nov 23, 2018.

  1. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    hi everyone
    I rarely start a thread but now seems like we've reached a new fork in the road to acknowledge
    dad's been in his care home for 3 and a half years now and at times it's been 'eventful' and challenging - he isn't aggressive or violent but he has been unco-operative and readily employed 'NO!' forcefully - the staff have been brilliant and worked ways round his refusals of meds and personal care - in fact they all know dad well and like him and his own individual querks
    up until recently I felt I could get through to him and provide some comfort from the high anxiety he often feels - I wonder now whether he does know me, though he mostly responds to me as though I am familiar and close to him - he moans a lot, I don't mean complains, literally moans, not in pain (we are all sure of that and have checked) but in distress, partly to 'let it out', I think, and partly as a comforter - he can be very loud so it's not pleasant for him or anyone around him, and if something in particular disturbs him he can become highly agitated, though it's rare as the staff are vigilant at getting him somewhere quiet and getting him to take his prn (hardly ever needed but very necessary when it is)
    he is not standing (has muscle tone but I don't think his brain can work through the processes any more) and hates the stand aid, won't tolerate the hoist, so personal care is very tricky - although he cannot walk he often ends up on the floor especially at night and the staff are effectively lifting him up, which isn't sustainable - he tends to sit in a chair or on the bed and hutch himself forward and backwards, so he's exercising his arms and legs pretty well but at times must slip over the edge of the chair/bed onto the floor, not falling as such (no injuries and hardly ever any bruises) but not safe
    he has now slipped so far into the dementia that sometimes it is very hard to get through to him to reassure him that eg a wash isn't going to hurt him - he may hear what's said but it means little to him, so whatever is done to him is always a surprise, unwelcome and to be vocally 'fought' against - it can't help that he has always been very short sighted, after a TIA a few years ago lost the left side of vision in both eyes and now seems not to focus
    he's had every intervention and agency available over the years - meds have been tweaked and changed - everthing has been tried
    so the care home staff have had to admit that they aren't really providing the level of care he needs, and honestly they have each and every one tried so hard and hate to have to accept this and in no way is the manager saying he must be moved or giving notice - but the situation isn't fair on dad, the staff, the other residents ....
    time to look to move him to a nursing home which specialises in challenging behaviour so there will be more staff and with the expertise to support poor dad
    luckily there are such homes locally, dad has the funds to pay any fees and with LPAs in place there's no-one else to have to liaise with, but whether/when there will be a place ...
    so, standing at a crossroads sussing out which path to take
    just so sad
     
  2. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,252
    Female
    Dundee
    O how @Shedrech how terribly sad. It sounds as if your dad's care home have done well by him and I'm sure you've developed a great relationship with them. So hard to break these ties but it does sound as if the time has come. Wishing you strength in the coming days and the search for a new home for your dad.
     
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    thanks @Izzy
    you are right, his present home has been just that,his home - I couldn't ask any more of the staff and know they have all been fighting to keep him there
    even good things must end sometime
     
  4. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,478
    Ireland
    Sorry to hear this, @Shedrech . It sounds like your dads Home has been really good with him. It's so sad when we know things are being done for the person's good and comfort - but there's no way of helping them to understand what's happening or why.

    I hope you can find a good nursing home soon, and will feel as confident in the care your dad receives there.
     
  5. LynneMcV

    LynneMcV Volunteer Moderator

    May 9, 2012
    3,464
    south-east London
    @Shedrech , you are facing quite a quandary and I do feel for you.

    I am glad that you will have a choice of places and that financially and LPA-wise everything is in place - but I know it is still a huge worry to find the right place and to make a break from the home which has looked after your Dad so well over the years - and where staff have become as much a part of your life as your father's.

    Thinking of you both as you enter this next stage and sending positive thoughts that you will find an ideal placement without a long wait.
     
  6. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,335
    leicester
    @Shedrech Perhaps you are right to start instigating a move before it becomes an emergency decision, I hope you can find somewhere that you can place as much trust in as the current CH.
     
  7. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    thanks @LadyA and @LynneMcV and @nellbelles
    I appreciate that the home has been so honest, they only want the best for dad - we all thought he would be with them to the end so it's tough all round
    daft, but at least it's not something for dad to worry about

    sitting here watching a documentary about David Cassidy, another life ended in dementia
     
  8. YorkshireLass

    YorkshireLass Registered User

    Feb 15, 2017
    198
    Female
    Ilkley
    Shedrech , sending a big hug. xxxx I often feel that I too will have to tread a similar path to yours. It's never far from my thoughts. I hope you find somewhere equally as caring as where your dad lives now, there are many angels out there xxxx
     
  9. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    I just happened to ‘drop in’ today...and I’m so sorry to hear this. It won’t just be a big change for your dad, but you too. I know I feel quite attached to a lot of the carers in Martin’s home, and I expect it is even more so for you, as your dad has been there for so much longer. I do wish you well, with your sesrch for the right home for him.
     
  10. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    thank you @YorkshireLass and @Amethyst59
    it will be a wrench
    and yes, there are carers out there with such heart
    I can't help but hope your path doesn't lead this way Yorkshirelass
     
  11. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    I hope your search for a new home goes well. I wish strength to you both.
     
  12. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,070
    Merseyside
    I’m so sorry to read this @Shedrech. I know how happy you’ve been with the home.
    I know you will find the right place for Dad & I wish you strength.
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,835
    Nottinghamshire
    Sorry to hear this @Shedrech. I’m sure you’ll do the best for your dad. Good luck with your search.
     
  14. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,415
    Female
    England
    My thoughts are with you @Shedrech, it’s not an easy thing to do when you have had such good care. I’m sure you will pick the right path to follow. Take care.
     
  15. canary

    canary Registered User

    Feb 25, 2014
    9,890
    Female
    South coast
    ((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))) @Shedrech
    It is always hard and saddening when we are brought face to face with our PWDs decline and have to decide on things which will change lives
    I have always been impressed by your sensible approach. Trust your instincts on this matter - Im sure they will not let you down
     
  16. love.dad.but..

    love.dad.but.. Registered User

    Jan 16, 2014
    4,380
    Kent
    Any changes that have to be made out of neccessity for a pwd are hard for the carer to accept as for me it just seemed like yet another affirmation of their increasing decline and a carer's lessening influence on the impact of the illness.. However...the home from what you say have done a very caring job for your dad and you are a wonderful daughter taking care of all your dad's needs...he would be so proud of you as I felt my dad would have been of me...having to accept and make decisions for them to keep them safe and looked after. I hope the changes slot into place and that eases your natural concerns.So....sending you a huge hug.
     
  17. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
  18. Jale

    Jale Registered User

    Jul 9, 2018
    235
    Female
    I hope that you are able to find somewhere for your Dad, and that when you do he settles. It is so hard having to be the one who has to make these decisions, but sometimes we have to let our heads rule and not our hearts. Will be thinking of you
     
  19. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,740
    Yorkshire
    thanks @Jale
    your signature is so apt
     

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