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  1. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    @Marnie63 Extra funding? At this rate, you could nearly raise some funds by charging an entrance fee!
     
  2. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    I just wanted to extend support and concern to everyone.

    Marnie, I'm worried about you, you must be overwhelmed and exhausted not only with caring, but also with all the idiocy from SS. I do hope that the "expert" visit on Friday goes as well as possible.

    I doubt you've had any time, let alone energy, to really process the stroke and aftermath and what it means for your dear Mum. I'm so sorry about the whole situation. I do hope you are able to find a way to give your Mum the care she needs, the way you want, without killing yourself--and I do mean that literally. I'm glad the agency you found is working out well, thank goodness you have some peace of mind on that front.

    This wretched disease has so much to answer for. I'm so sorry. You are in my thoughts.

    On a lighter note, Lady A's entrance fee suggestion is genius! You could combine the entry fee, with maybe a performance of Carmar's Talking Point Barbershop Quartet Ranters?
     
  3. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    @Marnie63 @Carmar
    If only I could sort this for you I so wish I had a magic wand,it would go to great use.
    Thinking of you.
    @LadyA we could help taking the entrance fee and charging for tea too.
    Thank you for the smile in all this awful mess. X
     
  4. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,604
    Hampshire
    LOL!!! :D
     
  5. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,604
    Hampshire
    PS - how do I do the '@' thing?!
     
  6. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,760
    Female
    Dundee
    Type the @ then immediately type the first few letters of the username you want to post. A little drop down menu will appear and the person's user name should be there. If you click on that you should get what you want. It should appear like this -

    @Marnie63
     
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,529
    Ireland
    @Marnie63 you just type the @ symbol and the name, with no space between. When you start typing the name, you'll get a drop down menu of members' names similar to what you've started typing. When you type the @+member's name without any space, they get an alert to your post.
     
  8. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,604
    Hampshire
  9. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,760
    Female
    Dundee
  10. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,604
    Hampshire
    Very quiet here today, you're not all travelling down to be part of the 'rampaging horde' are you?! If you are, then all entrance fees will be waived.

    It's been a lot quieter for me too, but unfortunately this has given me more thinking time. I'm not sure that the enormity of the currently situation has actually hit me yet. I was thinking this morning that one day a week of all this coming and going of people would be enough, but I've got it every day now! I've just got the schedule for next week though, and the agency seems to be 'narrowing down' now to only a few key carers, so at least there won't be to many different faces on the scene. I only want the good ones, and I have quickly sussed who they are by watching them at work. Our regular lady is brilliant, thank God. She has never had to do the sort of care for mum before as she does now. What a relief.

    Podiatrist came to see mum's feet today and said that in 30 years she has never seen anything like the red areas and spots mum has. It's still a mystery. The wound is still bad, but nurse is coming again tomorrow and I will spend time trying to understand what we are aiming for. It's not getting any better, but at least not getting any worse either.
     
  11. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    Ireland
    Quite unbelievable @Marnie63 - the waste of resources re the observer thing!
    You're doing great, please don't wear yourself out xxx
     
  12. Amy in the US

    Amy in the US Registered User

    Feb 28, 2015
    4,619
    USA
    Marnie, I can't imagine that you have had enough time and/or energy to really be able to take everything in, let alone adjust to it yet. You've been so busy dealing with all sorts of urgent issues that have all required your immediate attention. And having someone, especially a PWD, in hospital is just exhausting.

    I hope you're able to get some information, if not useful advice, about what to do with the wounds on your mum's feet.

    Sending very best wishes to your mum and to you.
     
  13. gene genie

    gene genie Registered User

    Apr 26, 2017
    178
    Hi hope this is not intrusive, but reading your post and you mentioned the illuminations, are you by any chance living in Blackpool, if so please could I ask a big favour, would you please message me on my thread e coli infection, it would help to "talk" to someone local as I'm really new to all this and financial ding it really difficult to deal with.
     
  14. Marnie63

    Marnie63 Registered User

    Dec 26, 2015
    1,604
    Hampshire
    I swear the dementia demon that is inhabiting my mum's body somewhere is still mocking me. For several nights in a row now I've had to change her after the carers have gone, and I think I'll probably have to do it again in the night. But it's so damn hard, all the pulling and turning and then I have to change her clothes as well as they get soaked through. Why does it all have to come at once, and why when the carers aren't here?! I can already feel it in my back and my left knee is hurting (I think something has triggered pain in an area I damaged once out walking).

    I think somewhere, at the back of my mind, I've already realised that I can't do this for much longer. What is it going to take for me to take some drastic action? Even if I get double up carer visits eventually from the agency, how do we time their visits with mum's toileting. Answer - we can't. I would need two live in carers here all the time, standing by, waiting for a wet pad! Catheterisation has been mentioned, but I resisted. Maybe that's an answer, or at least worth trying for a while. Leaving mum in a wet pad for hours on end is not an option as her skin will start to sustain damage from all the urine contact. If there's a chance that she ever gets semi mobile again, or can at least transfer, or stand, then maybe the toileting issues will become easier, but no guarantee of any further improvement of course. Maybe I'll hang on to see if she does improve any further over the coming weeks.

    Am I clutching at straws now?

    I really do want this to end soon, it's tortuous for me, and for mum. It's like a big, black nightmare, but with no end in sight. It's horrid, utterly horrid. I hate dementia!
     
  15. HillyBilly

    HillyBilly Registered User

    Dec 21, 2015
    1,947
    Ireland
    @Marnie - I think a page or two back somebody posted their positive experiences of catheterisation. Got to be worth a try? You can't manage this single-handed for the many hours of the day/night when you don't have the carers in x
     
  16. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    @Carmar is right Marnie, please be careful. I know I'm being a real doom and gloom merchant, but if you injure yourself your mum might have to go into an emergency placement. If you at least look at a respite placement as a matter of urgency whilst your mum's bottom heals you might be giving yourself more choice rather than Social Services placing her in the first or cheapest vacancy they come across.

    I'm sorry I sound really harsh, but your health is suffering and your mum wouldn't want that. X
     
  17. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    It's 05.45 and I've got up because otherwise I'm lying in bed worrying about the future. My wife is sleeping soundly and I'm depressed and very sad. My wife is increasing losing it in many ways. I can't remember when we last had a decent conversation about anything even the simplist of things. My wife likes to talk, always has done, but the difference now is that she talks in generalisations unable to articulate her meanings. She looks to me to find the words for her and then accuses me of interfering.

    Yesterday shopping we had a meal out and she said she'd pay but got confused over the amount. Poor man just stood there waiting for more money till I intervened. So awareness of money amounts has gone. She hovers over the TV remote buttons unable to work out where to push for the chosen program. That's gone. So many things gone.

    She gets tired quickly, falling asleep often during the day so I'm left alone again.
    The trouble is that she is still at that stage where life is semi normal but where her dementia kicks in big time. Anxiety, anger, depression, cruel words, she's frightened too.
    Here's the thing, and I'm pouring my soul out here....in one way I wish she wasn't here sometimes, and now I'm crying because I love her so and I feel I'm being selfish. I'm sad because dementia is like someone dying.
    There no chance of me having a heart to heart with someone as she very aware of where I am and hates me going off on my own (any suggestions?).

    I'm fed up with it, I want a normal life and my old wife back again who could cook a meal properly, make friends easily, be okay with her own company, give me a reasonable and articulated telling off, and the list goes on, but of course , it ain't going to happen, is it?
     
  18. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    Hi @Dutchman
    I'm awake and feeling sad too.
    I know what you mean about wanting it back, yep truth is it's not coming back.
    I go through the same behaviour with Mum, paying, anger, fear, following inability to do things.
    My only suggestion is if your wife doesn't already see if she can go to a club (day centre) to give you some time, even if you get to catch up on sleep, to enable you to cope with the next day.
    I'm so sorry you are faced with this, it's so hard and can be lonely.
    I use this site as my new best friend.
    Take care. Always happy to chat. X
     
  19. Dutchman

    Dutchman Registered User

    May 26, 2017
    410
    Male
    Devon
    Thanks, it's great to know someone's out there doing the same
     
  20. DollyBird16

    DollyBird16 Registered User

    Sep 5, 2017
    1,186
    Female
    Greater London
    Let's make the best of today.
    My aim for today is to make Mum smile and giggle at least once.
    We'll go out have some music and a sing along in the car.
    It's not the Mum I knew or want now, nevertheless if it can be a majority happy day for her that cheers me.
    All whilst waiting for the next 'episode' to kick in around 12:30. X
     
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