They don't tell you these things...

Discussion in 'I care for a person with dementia' started by drummergirl, Oct 11, 2014.

  1. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,302
    Cotswolds
    You have every right to feel miserable Casbow :( I wish I could help practically, but all we can do on here is share and offer support. I hope you have at least some help in the form of care at home, day care, respite, that kind of thing?

    Massive (((hugs))) to you

    Lindy xx
     
  2. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    Hi casbow.

    Don't be sorry, we all have our down days. Your story is a duplicate of mine. Life is sad living with D. One of the reasons I come on TP was because everyone is so understanding, supporting and helpful. Try visiting Positives for our daily chats. It's about anything, shopping, the weather, our gardens decorating. I know it doesn't alter anything, but, we are all in the same boat and help each other, and we don't feel quite so alone.

    I have come to accept the situation over the last 14 years. I just take it a day at a time. I try to look at the good things left for me. I am grateful OH is still with me. The little things are treasured, smiles now and again. The times when he wants to hold my hand, gestures for a little kiss or a cuddle, the very occasional I love you, even though he doesn't know we're married, but, I firmly believe deep down they still have their feelings for us, even if they can't remember.

    Take care, TP is here for you. Have a peaceful night. Hugs M xxx :)
     
  3. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,265
    Female
    near Folkestone
    Good morning casbow, I am sorry you are feeling lonely and isolated. It gets to all of us at one point or another . This disease is just so difficult to deal with as we can't do nothing to stop it . I echo what Mal says and I also live day by day . Treasured moments keep me going, a smile , holding hands and the love which is still there just in a different form . I also have a son, who finds it difficult so don't hear or see as much of him as I like too . Boys are never as good talking about things as girls . They keep a lot in . Hoping today is a little easier for you?! Sending hugs your way and keep on posting xxxxxxxx


    Sent from my iPhone using Talking Point
     
  4. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    I'm right there with you, Casbow. Lived all of it. The abandonment; isolation; fear; anger; tears; hopelessness. It's a dreadful experience.

    One book I had said that our isolation is similar to those who get put into solitary confinement in prison. Don't know how long they get, but for me, it was six and a half years. Plus being called a liar, virtually, in my own home; being threatened, (not by husband, I might add), and finding the whole asking for help thing far too harrowing and frightening, in the end, so I just stopped asking.

    Apart from that - when hubby finally got put into full time care five months ago, he's since been thriving. It took a third crisis to get there, but he's being looked after, now. The fact he's been diagnosed as not having capacity almost made me laugh. I could have told them that four years ago. But thank God, a lot of the agony has now been lifted. I can only hope someone eventually sorts your situation out. Please feel free to PM me if you need a bit of company and support, xxxxxxxxx
     
  5. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds

    That's beautiful.
     
  6. Rageddy Anne

    Rageddy Anne Registered User

    Feb 21, 2013
    5,990
    Cotswolds
    #166 Rageddy Anne, Oct 29, 2015
    Last edited: Oct 29, 2015
    My husband is in tears because he says nobody wants to talk to him. He woke me at 03.15, almost twelve hours ago, and. I've been right beside him ever since. Even when I was going to the toilet he wanted the door open so that he could know here I was. I'm exhausted, bodily and mentally, from trying to run the home and life where we shared the tasks, but now I must do everything. And because I've been looking at my iPad, he says no one wants to talk to him, no one visits, and no one cares. We see people almost every day, we've been out today, I 'm probably too tired to drive but I must, I think of entertainments every day, but none of that is enough, because he lives in the NOW, and right now I'm sitting quietly and he thinks nothing has happened today.To quote from the song, Life is a Cabaret. And the show must go on.

    So when am I supposed to find the time or energy to ask for anything?
     
  7. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    Oh Anne,

    I'm sorry you are having such a bad day. It is so hard, I don't have the words to put it right. Stan likes me to sit with him, hold his hand or give him a comforting cuddle, if I go out of the room he is calling my name, then when I ask what he is calling me for, he looks at me quizzically. If only we knew what was going on inside their minds.

    I hope hubby settles, and you manage to get some well earned rest. My thoughts are with you. Lots Huuuuugggs M xxx :)
     
  8. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    It's a horrible lonely disease. Today my Mum fell again, and has broken her wrist - again. This morning I found the toilet covered in poo, the floor, mat, basin. Her bedroom door was open, she was sat in her chair whilst her bed was covered in, yes, you've guessed it poo. So before I had to leave for work at 7am I had to sort it all out.

    Then I had to leave early after hearing that she had fallen again.

    It just doesn't seem to end.
     
  9. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
    Oh Summerheather,
    What an awful start to the day. Perhaps you could get your Mam to wear pull ups at night, at least they stop 'it' going everywhere. I don't know what kind of facilities you may have or if you have help, but, have you spoken to your Doctor to see if a carer could come in? I do hope your Mam is ok after her fall, so sorry she broke her wrist again. Could your local Dementia centre offer help in the way of advice? Sending you many hugs. M xxx
     
  10. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
     
  11. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I'm sorry Mal2, I'm just in a really rubbish mood this evening. Thanks for your advice xxx
     
  12. Mal2

    Mal2 Registered User

    Oct 14, 2014
    2,967
    Enfield
     

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