Still finding if difficult to come to terms with mum's illness

Discussion in 'I care for a person with dementia' started by Jezzer, Mar 29, 2018.

  1. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    I am soooo happy to know that! Much Love x
     
  2. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Oh that is fantastic, I am so so pleased, so pleased. What a greeting! And her lovely smile! what a moment! So so good to hear. Gxx
     
  3. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you!
     
  4. Scouts girl

    Scouts girl Registered User

    Jan 18, 2017
    308
    Oh what a lovely welcome for you. Those precious moments when we get a smile lift our spirits so much and it is a shame we cannot ‘box’ them to store in our memories. Xxx
     
  5. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    It certainly was! Thank You for your kind response xxx
     
  6. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Morning all! A warm sunny morning here - hope you are having the same wherever you are. I just wanted to share my feelings following a news story I read online over the weekend. Sadly another case of concerned family members placing a cctv device in their mum's room in a Dementia Care Home. What they witnessed was shocking and distressing - for their mum, for them and for folks with a mum in care. The 3 "carers" received suspended jail sentences. Given @kindred 's correspondence to a national newspaper last week and subsequent carers accounts in the same paper , I was particularly interested in the comments that followed the story shown online yesterday. The majority were folk who were appalled both at the abuse and "punishment" of those responsible, but the comment that upset me was "Why can't her daughters look after her?". I responded as best I could and was pleased to see another reply which stated " you clearly have never cared for a loved one with Dementia". Hurray for that person! I guess there will always be folk who view Dementia sufferers as folk who are a bit forgetful and tend to get lost. They simply haven't a clue about this devastating disease, the many varied and complicated forms it takes, and what it does to us, their loved ones. Every one of us, whether we are a child, husband or wife, parent, in-law, partner whose loved-ones are now in residential care had no choice but to take this most difficult of decisions. Of course we would have continued to care for our loved ones at home, but we all reached that point where it was no longer possible and still we are considered "uncaring, not bothered, shirking our responsibility" by some. The reality, we know, could not be more different! My mum is fortunate inasmuch as she is lovingly cared for but we know such abuse goes on and it must be stopped. How awful too for families who are in the process of placing a loved-one into care. Seeing that awful footage is not helping them. I'm sorry, I've ranted on but I had to offload that. A huge Thank You to the kind and caring staff who work in CH/NH's. We know what you do and God Bless you. Thank you for listening. x
     
  7. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Thank YOU for posting and I did not see this news story. I do know from many different jobs I have had in the past that where there are vulnerable people - of any age and in any place - there may be some people whose response is sadistic. I'm presuming that's kind of what was happening here. Thank YOU with all heart, this is a wonderful and rousing vote for us families who do the very very best we can and are usually forced to put our loved ones in care in the end because the devestation and our suffering has become too great. Thank you. Gx
     
  8. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi. Just need to share. Mum unable to speak today. Yesterday she was chatting away. I felt so sad for her. She tried at least a dozen times to tell me something but had to give up. Not quite so sleepy. So this morning was a hand-holding, stroking forehead type of visit and I gently told her various things. Beautiful smile though. Just feeling a bit teary. Thanks for "listening" . Love to all.
     
  9. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Oh my darling, your mum's beautiful smile. And holding hands is one of the most beautiful things we can do, it means the world, it means I am with you, completely with you. So so well done, not surprised you are overwhelmed with emotion. You are being a beautiful, devoted and so loving daughter. Gxx
     
  10. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you Geraldine (hope it's OK to use your actual name). I'm Jan and am quite happy if folk here use that. You said some lovely things about me and I really appreciate that. She's my mum and has been wonderful all my life. She is still wonderful, just different but as we all know, it's this cursed illness that's taking our loved ones away from us, slowly and painfully. Thank you again, I always read the posts on your thread - I found new friends there and like to know how things are going. The love and support of friends on TP keeps me going. Bless you and Keith x
     
  11. kindred

    kindred Registered User

    Apr 8, 2018
    2,199
    Oh bless you, too Jan. Please, yes use my name. Thank you for reading my thread, too, I appreciate that so much. Of course she's your mum. There is nothing like this illness, it is surreal in its effects on those who care for people who have it. Your mum knows how much you love and appreciate her, she knows. And that's what matters, there's a kind of completion to our relationship with them then. That is so important. Thank you Jan, lovely to hear from you. Geraldinexx
     
  12. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    I havent posted for a while. The title of my thread should really be changed since mum has deteriorated so much. Can I do this or should I continue on here? I'm just feeling dreadfully low watching mum like this. I'm sorry; I sound pathetic as so many of you are in just the same position. I wake full of dread, visit mum, come home and do what I have to but I feel I'm not me and I'm in a nightmare. Thanks for listening.
     
  13. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    3,011
    Nottinghamshire
    I'm feeling exactly the same as you this morning. How long is this nightmare going to go on?

    Thinking of you ((hugs))
     
  14. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    (((((hugs))))) @Jezzer
    Once they reach final stages (which is not necessarily the same as end stage) life is an emotional roller coaster.
     
  15. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi @Bunpoots Thank you for replying especially when you too are feeling like this. I wish I could tell you how long but I cant. It's like a sadistic game toying with us isn't it? We know this awful disease is terminal but we get a bit of light and then are plunged back into the darkness again. As @canary said (& Thank You too for replying) it IS an emotional rollercoaster. Our lives are "on hold". We don't want our precious loved ones to die but neither do we wish them to go on like this. Yesterday I said lots of things I needed to say to mum even though she was asleep. Mainly how much my brother and I love her, but also thanking her for being the most wonderful mum, apologising for the worry I once out her through and other personal things. I looked at her face and a smile appeared so I know she'd heard me. I've not posted this before but for years I've been (and still am) treated for anxiety and depression. This started years before mum became ill. I very much doubt I'm alone in this respect but this awful time has just made this worse and I'm drawing on every bit of strength. The wonderful support of my friends on TP is adding to that strength so bless you and Thank You. ((((Hugs))) back x
     
  16. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    478
    @Jezzer , I just wanted to send you love and support, what you are going through is absolutely the worst and most intense experience ever I think - watching a loved one slipping away.
    You have been so kind to others, offering your support while at the same time trying to cope with your own gathering grief and understandable anxiety and depression.

    Be assured, there will be many on here thinking of you and your Mum and hoping she can be at peace soon.

    With love and a (((hug))) xxx
     
  17. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    @Prudence9 Thank you so much for your lovely message. Your love and support is so much appreciated. I was so down yesterday & just needed to share here on TP with folk who understand. I thought afterwards that I sounded full of self-pity which was not my intention. I just needed to offload.
    So many of us are experiencing the same I know and I'm so glad to have TP.
    I'm told by the senior nurse that this part of mum's deterioration could go on for a while - they don't feel her passing is imminent yet. That said, something could change quickly, we just don't know. I sat holding her hand and quietly talking to her yesterday when out of the blue she said "be quiet!" . "Who mum?" I asked. " You! " came the reply then she was back to sleep again. I had to smile - that told me didn't it.?!!! No speech for ages then that. She also pulled her hand away so she definitely wanted no bother. From her face, she seemed agitated and she was moving her legs too. I wonder what is going on in her mind? Thank you again for your kindness. Sending love and (((Hugs))) in return.
     
  18. Prudence9

    Prudence9 Registered User

    Oct 8, 2016
    478
    Not self-pity Jezzer, grief and sadness, and where better to offload?

    That's a lovely memory that will make you smile forever. It must have been enough for your Mum just to know you were there.

    Hope you feel a little better today xxx
     
  19. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Thank you @Prudence9 , I do actually. Mum is such a lovely, kind and caring lady but could fight her corner so telling me to "be quiet" was part of that great personality still coming through! :) x
     
  20. smartieplum

    smartieplum Registered User

    Jul 29, 2014
    259
    Hey jezzer. Just thinking of you. Xx
     

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