1. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hello.This is my first post.I have worked with people with dementia in my job but now help to care for my father with the help of outside carers.He cannot walk except with the help of a gutter frame and either me beside him or 2 carers.But these days it is getting more difficult.He was diagnosed with vascular dementia in 2016 and I have had LPOA since then.He has a permanent catheter and now an ulcer on his leg.He is diabetic but food and pill controlled.The doctor has said that I need to talk with him about care homes.I already know the answer to that.Dad has always been very rigid in his outlook.He has to go to the toilet with the help of a Sara steady which is a great help,as he refuses to use a commode..His CKD levels have gone down to 40.I didn’t realise that this was connected with dementia.Amazing the things you find out.Thanks for listening.
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    308
    Male
    North West
    Yes as the GFR drops, it worsens the dementia. Sounds like your dad has lots going on and your amazing helping to care for him. Do you think he would consider help or maybe test the water? I found it difficult myself as well as mum, so I went to see a care home myself with mum -just an idea
     
  3. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,684
    Nottinghamshire
    Welcome to DTP @TNJJ

    I have friends who work in care and they both tell me it's very different when it's your own family member who's affected.

    I think most of us have struggled when the time comes to consider full time care. I know I should have been more proactive in getting my dad into a carehome but it wasn't until after he'd had a massive stroke that I could bring myself to admit that he needed more than I and his lovely home carers could manage. Once he was there he was content and much less anxious than he'd been at home.

    I never had the carehome conversation with dad as he went straight from hospital but the general consensus on here is that a PWD will never accept the need to go into a home. My dad thought there was nothing wrong with him inspite of having heart failure, kidney failure and Mixed dementia among other problems. When I needed him to do something I usually made up a reason I thought he'd find acceptable!

    You'll find people who understand here. It's a good place to share experiences or have a rant... or whatever it takes to get through this journey :)
     
  4. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    7,564
    Yorkshire
    Hello @TNJJ
    A warm welcome from me too
    Honestly, I am amazed that you have been able to keep your father at home so long .. how on earth does he cope when neither a carer nor you are able to be with him
    I'm not surprised the doctor is mentioning a move to a care home ... with his lack of mobility, diabetes and the ulcer it sounds as though he will need a nursing home to provide the level of care he needs

    Maybe make all the arrangements and 'sell' it to your father as a holiday, convalescence, a break for you (maybe say you are going away for work or holiday and feel guilty about not visiting so want to know he has someone around to check up on him, and they make lovely meals)
    maybe it's time to put what he needs above what he may want
     
  5. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hi
     
  6. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hi.We are coping at the moment but I’m not sure for how much longer.He goes to a care home for a bath and hair wash once a month as he will only consider that.He has already had words with me about how I should consult him every time.I do and the answer is always a resounding N0..I feel like a child.I hasten to add I’m 55 he is 86!
     
  7. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Thank you for your warm welcome everyone.Im still getting used to the forum
     
  8. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hi .Dad seems to ok at the moment overnight.He has Mirtazapine to help him sleep in his hospital bed.He is supported to bed at about 18.30 every night which I know is very early.He has a tv and water in his bedroom so will watch it .He had a stroke Dec 2017 so this hasn’t helped.
     
  9. canary

    canary Registered User

    Feb 25, 2014
    9,660
    Female
    South coast
    Im afraid that this is par for the course.
    We all want to do what our person with dementia wants and when it is a parent we feel that we shouldnt go against their wishes, but, honestly, there comes a time when you have to change from enabling their desires to implementing their needs. And, Im sorry to say, that implementing their needs often requires a fair bit of being "economical with the truth" - which doesnt sit well with us, but is often the only way to improve the situation.

    What do you think aught to happen to your dad (irrispective of what your dad says)? If your dad was agreeable, would you think that a care home was the right thing to do, or would you still feel that he would be better off at home?

    I think you need a long, hard, objective look at the situation, decide what your dad needs in the way of care and then work out how to implement it.
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    At the moment dad is deemed to have some capacity even though it is variable.So I’m abiding by his decisions to a certain extent.There will be a time when he will go into a home,especially if he goes off his legs.We will be unable to get a hoist through his doorways.We struggle now with the Sara steady to get into various rooms.He lives in a bungalow with small doorways.
     
  11. Joy1960

    Joy1960 Registered User

    Oct 29, 2018
    16
    Hi TNJJ,
    I empathise with you as I'm in a similar situation with my mum 84.She was diagnosed last July and unfortunately at the end of Oct my dad died.
    She won't consider respite and is adamant she won't move.
    She lives in an old terraced house that is starting to need repairs..upstairs bathroom and steep stairs.
    I was always of the opinion that I would be able to keep her at home with live in care(I'm aware of the expense) but realistically I don't think that the house will be conducive to her and I think that her safety will be compromised.
    I have a lady that stays with her when I'm away but I'm finding it difficult to get full time private care.
    Im getting to the point now that I'm researching care homes ,because sadly as she progresses I'm finding it more difficult to deal with the issues that this awful disease brings.
     
  12. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    H
     
  13. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hi Joy1960.I care for dad with the help of outside carers.,which is not too bad at the moment.But as with dementia you get other illnesses cropping up.I can sympathise .It is really difficult to make sure they are safe and not compromise their independence.Or what’s left of it.I am getting to the same point but I will carry on for a while.
     
  14. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    Hi.I haven’t noticed this with other people but I have with dad.When he stands and walks with his gutter frame he sort of goes “mm”when walking.Is this part of the dementia or the stroke?
     

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