1. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    Well its the first time I have started a thread. I have been checking out the chat rooms but its a bit quiet in there. My Dad died in November and was admitted to hospital 6 weeks previous to this. He was mentally fine, but physically very ill, but my Mum had been suffering from dementia (undiagnosed) for some time. She had been my Dads main carer and he totally protected us from the seriousness of the situation. He was in total control mentally and was totally opposed to carers. My mum (with hindsight) must have been totally run ragged. My dad was a massively private person and very stubborn with it. It was not until he was admitted to hospital that we realized the seriousness of the situation. I took charge of the situation at the time (not realizing how this was going to be). I wanted my sister to - as a nurse, but to be honest she distanced herself from the situation. We did attend the memory clinic while my dad was at home but she wasn't actually diagnosed until after he died (a very difficult time). The period after this was extremely difficult - with her totally not acknowledging his death for months - which was very upsetting and difficult to deal with. She has no short term memory but is currently able to look after herself (shopping etc). I work full time and see her after work every day to help her with shopping lists, bins, mealtimes and anything else she needs assistance with. In her routine she can cope - but the early days were very bad with constant phone calls in a very upset state to me. Things have settled down a lot - and she is now on Memantine (medication) which seems to suit her. She has recently contracted a UTI which has left her very confused and I am feeling very pressurized. I got her an automatic pill dispenser months ago - which after a few days she adjusted to, but she cant seem to accept the extra tablet, which she is leaving out (take it out and leaves it on the table)- as she is aware it is extra and she doesn't remember what it is for. I am really hoping that this bad spell is just because of the UTI and that things will improve as I am finding it very difficult at the moment. I just want my lovely mum back - but sometimes all I can think of is the worst is yet to come. My brother lives away and my sister is happy to leave it all to me, she thinks mum 'plays me up'. There are so many other things I could add to this, but I appreciate I am rabbiting on a bit. As I said - Life is difficult!
     
  2. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    Hi and welcome to TP, you have come to a good place. I am sorry you are having so many problems and yes <mum 'plays me up'.> struck home, because my mum plays me off against my sister. Idf she doesn't get her own way will change her affection from one to the other. Before finding TP we thought it was just a front, but now realise that it is the illness talking, or has been for ages.

    We now, my sister and I just let her ramble and accuse, it hurts but you learn to realise it is the demons in the dementia doing it.
     
  3. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    my sister hardly goes to see her but if we ever are there together she said my mum changes when I arrive and becomes more 'childlike'. I really don't understand this - almost as if mum puts a front on with her there. My sister was very close to my dad and me my mum so I don't know whether this is the issue, but I cant seem to get my sister to understand. just another point - she live twenty minutes walk from my mum but doesn't drive
     
  4. nitram

    nitram Registered User

    Apr 6, 2011
    19,024
    Male
    North Manchester
    At one stage with my wife I used to refer to her going into 'hostess mode' - polite, agreeable, well mannered - just like a good hostess should be.

    She used to do this with strangers or more remote family members, those who knew her day to day realised that she became a different person but were as baffled as I was about why it happened.

    The people subjected to 'hostess mode' would ring up and say 'she seemed OK when we saw her'.

    I just left them in ignorance and carried on with my (our) life.
     
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    They do revert back to children, somewhere on here someone did write it was like second childhood they revert to. I would love to say to her sometimes, "act your age not your shoe size (7)" but then realise she is acting her age.
    What gets me is I ask her if she wants to do something. No and then 5 minutes before I leave she wants this that and next thing doen. I realise now it is her way of keeping me there with her.
     
  6. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    thank you nitram and patsy56. I sometimes feel that I am fighting against the ones that's should be helping. Interesting the 'hostess mode' but a very good analogy - I have noticed this when I take her to the doctors and she is met with a professional. My mum always finds something else to try and keep me there. as much as I love her, I don't think we could live together, my life is so different to hers and I am so afraid of the time when she can't cope alone
     
  7. nitram

    nitram Registered User

    Apr 6, 2011
    19,024
    Male
    North Manchester
    "Interesting the 'hostess mode' but a very good analogy - I have noticed this when I take her to the doctors and she is met with a professional."

    I always positioned myself so that the doctor, or other professional, could see me but my wife could not. I then nodded or shook my head, or mouthed words as appropriate, most professionals took this on board.
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,781
    Salford
    Hi Beverrino, welcome to TP
    You're not the only one who steps up then finds the rest of the world (siblings in particular) do a disappearing act, been there, done that, got the T-shirt.
    I think you really need to sit down with sis, tell her how you feel and see if you can't get her to commit to doing a certain amount, if it come to it mention a care home and see if she feels any different when the inheritance starts to disappear at about £800 a week. Don't be a doormat like I was.
    K
     
  9. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    oh I think she would be happy for mum to go into a care home, she is totally not interested in money. I have tried to talk to her, but I end up feeling guilty?? I must be mad I suppose. Almost like I feel responsible. she works odd shifts where I am a strictly office hours worker, so she keeps telling me how much easier it is for me. Suppose I am just a soft touch :(
     
  10. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    99
    Gloucestershire
    And here's me, bemoaning the fact that I am an only child and the sole person responsible for Dad as his carer, when actually even if you have brothers and sisters it doesn't mean you will get much help:(
    I am so sorry you find yourself in this situation, there's a lot of us in that boat with you My only advice is to take as much advice from the professionals as you can. You could also put a sibling care plan down on paper and discuss it with your sister. If it's specific and structured with specific tasks she might just agree to share some caring duties with you. If it's vague, she may be worried about taking on too much.
    Best, Cerridwen xx
     
  11. susy

    susy Registered User

    Jul 29, 2013
    806
    North East
    Beverino, have you thought about having carers come round to help? They can monitor tablet taking (especially if it's an issue). They can also help with washing if that becomes an issue. It sounds like if when you are ready for them to come and start helping that as long as it's presented to her like "this is Emily, she is here for you" then Emily becomes familiar and you don't have to do as much or be there as much a massive weight is lifted from you. It sounds like your mum will accept care as she is the "hostess" sort of personality as long as an experienced carer helps her get used to this happening.
    This journey we are all on is not the same for everyone, however someone on here WILL have gone through what you are going through at any point. Do keep posting. It really will help xx
     
  12. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Hi, I think you will know when the time is right. I have been battling with my sister for the last year to stop mum going into care. I did everything for her. The only thing she did for herself was make tea in the morning. I fed her, shopped, washed, cleaned all the time battling with my sister who wanted her to go into care for no other reason in my opinion than to enable her to move away which I said she was more than welcome to do as I was doing everything anyway. When my mum stopped making tea, wandered out first thing in the morning early and sometimes late at night I was then concerned for her safety and called social services who decided that a care home was the best option for her. As much as it hurt me so much to agree to this I knew it was in her best interest and that is my advice. Do what you have to do to keep your mum safe.
     
  13. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Sorry posted previous comment on wrong thread! Must be going mad! What I meant to say was my mum always played up in front of me but was well behaved when my sister was around. I was always much closer to my mum. When she went into care EVERYONE told me how happy she was but she certainly wasnt happy when I went in. I made my sister come with me once and she accepted that mum wasnt the same when I was there but I was assured that she was happy and content. She always seemed to put on an act for my sister but with me she didnt bother and I really felt so much guilt and still do. Oh the wonders of dementia!
     
  14. beverrino

    beverrino Registered User

    Jan 12, 2015
    1,111
    well since I posted my original post, I am pleased to say that mum picked up after her UTI was treated (until the next one :( )
    she is a lot more settled again, but still very down and feeling sorry for herself. I love the days when we can have a conversation - sadly not very often, but I do feel less pressure than when I first posted. Than you everyone who has posted on my thread, it really helps
     
  15. little shettie

    little shettie Registered User

    Nov 10, 2009
    219
    Beverrino, I can totally relate to your thread. I would advise you to get some help, get carers going into mum even if its just to 'supervise' her medication. if you do this now, while she is able to still comprehend things, then it will makes things a lot easier further down the line when life will become even more challenging. I single handedly cared for my mum (and dad when he was alive) for 6 years, long distance too. Oh the strain. And I'm not an only child, there are 4 of us but sadly the other 3 are brothers and totally worse than useless!!!1 Bury their heads in the sand when it came to any decision making and I found in the end, I did not even ask their opinion or permission I was looking after mum so I made the decisions full stop. Once my dad died, mum could not cope alone, she muddled through for a year and then hubby and I moved her in with us. The stress of long distance caring is gone, and while there are some different stresses, life has settled down for now. My mum never accepted carers because I left it to late and gave in when she said she could cope. I'd urge you to reconsider and get help now. Nitram, I totally identify with your points too, mum was exactly the same. Even pulled the wool over social workers eyes with her 'act'!! Good luck xx
     

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