Please don't throw me away, breaking my promise

Discussion in 'I have a partner with dementia' started by kindred, Apr 17, 2018.

  1. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    676
    Female
    So, the last couple of days have been fairly calm, even had simple nice conversations with my husband, although he has been upset about our visit with the anaesthetist who spelt everything out blunt enough for it to really register.
    Then Virgin decide he needs a new SIM card, which arrived today. That was it.... since then we have been on this never ending loop. He can’t sort it himself (to be honest the instructions challenge me), and we have had to activate the change, but it won’t happen until tomorrow. He keeps asking me to do it, I explain we need to wait, he takes the back off, I tell him we need to wait, he gets the Apple box and pokey thing to get sim out, I tell him tomorrow... and we go on, and on. Every time he asks me he gets very aggressive when I say we have to wait.
    Then I lose my patience and slam the door.
    Finally I phone my friend of 50 years for some comfort and a natter, she has been a rock to me, but recently she has been, well, just different. I asked her how she was, she said she had to go as her son was late home. This was 2 pm. He doesn’t finish work until 4. I said that, and she said, oh well, got to go now. Bye.
    Is it me.... I think I am losing the plot...
     
  2. Toony Oony

    Toony Oony Registered User

    Jun 21, 2016
    453
    Hello @Sad Staffs - have seen you on here but not really 'spoken'.
    What a day you've had to be sure.
    I'm sorry that Virgin's new SIM has thrown a spanner in the works at home, and I really don't blame your OH for being frustrated by the whole rigmarole. Like you I get quite bamboozled by such things - if in doubt I save it for when my daughter visits :rolleyes:. He must find it so confusing and irresistible to just have a try and I can only imagine how difficult this must be for you. Everyone's patience wears thin, and yours deservedly so today.
    What a pity your friend couldn't be a bit more supportive for you when you needed it this afternoon. We may not be aware but those we lean on sometimes get fed up, don't feel great or have problems they don't want to mention - perhaps this is the case with your old friend. She only has so much to give and today may feel completely unable to give you the time and support you are wanting.
    Anyway - here's a hug from me and hope things settle down this evening for you both.
    XX
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,228
    Yes, it was lovely because often he has seemed unconcerned when I have struggled with anything, quite a reversal of years gone by. Bless him.
     
  4. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    Sweetheart, that is a bit upsetting about your friend. I wonder what is happening, it's probably nothing to do with you at all. Say more when you can and perhaps we can work it out. Oh what a business with the Sim card ... glad you did manage some simple nice conversations with husband. I wrote down a lot of the nice ones I had with K and when I look back, two things, I can see how far he has deteriorated in short time, but there is some comfort in the love in the conversations. Geraldine with love and thanksxxxxxxx
     
  5. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    Oh yes, that is lovely. Gxxx
     
  6. Philpsie

    Philpsie Registered User

    Jan 6, 2016
    35
    I love what you’ve written so much that I’ve saved it for me to look at when the time comes. My husband is in emergency respite as he was aggressive with the grandchildren and it meant I couldn’t see them as I’m either at work or looking after him with no care package. The problem for us is that so many of my husbands physical needs would be met in a home but the part of his brain that knows and remembers ‘us’ and all that entails is still very much alive. He cries and begs to come home and he is coming home when there’s a care package in place but I don’t know how long I can cope! He will still be a huge risk with the grandchildren and they are my life but then so is my husband.
     
  7. Amethyst59

    Amethyst59 Registered User

    Jul 3, 2017
    5,738
    Female
    Kent
    There is no easy answer to this, and I am in the same position. My husband is very aware of where he used to live, and where he is now. In many ways, I think this stage is one of the hardest. The one thing that comforts me, is knowing how stressed, ill and ratty I was, when I was looking after him. One person can not replicate what a team can do. Seeing him for a few hours a day, and sleeping properly means that I can be so patient with him. I don’t always get it right, by any means, but things are so much better now between us, than they were.
     
  8. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    Darling, I so understand this. Please, please don't cope any longer than you can, if see what mean. Gxx
     
  9. Lindy50

    Lindy50 Registered User

    Dec 11, 2013
    5,287
    Cotswolds
    Oh my goodness, @Philpsie , what a lot you are taking on !! Do you have a review date set up for a couple of weeks after your husband comes home, so that you can review how things are going, and maybe tweak arrangements?
    I will be thinking of you (as a wife and granny myself) xx
    Good luck and love
    Lindy xx
     
  10. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    OK. So today I am going to tackle a difficult subject. That people with dementia are shells. I have heard this once too often, read it once too often and someone actually said to me about Keith today (not in his home) that she expects he is a shell of his former self, isn't he.
    So looked round Keith's home saying to self, is that resident a shell? No. Is that resident a shell? No. Until I had been round the lot and no shells. There is not one resident there who has not got a personality, a presence and an individuality whether they can talk or not. Not shells. I shall be more forthright whenever I hear this in future. Have always found it a very frightening comparison, but not now.
    We played seated football which was grand, and Keith was much more awake and singing some strange songs from the wondrous and far off land in his head.
    Thanks guys, tell me what you think. Geraldine aka kindredxxxx
     
  11. Jezzer

    Jezzer Registered User

    Jun 12, 2016
    984
    Female
    Lincoln, UK
    Hi G. No, No, No!!!! Not Shells!!! People, with personalities (maybe not showing them so much as disease progresses) who happen to be stricken with this awful illness. How I hate to hear that description "shell". This is just my personal view. Keith was singing for God's sake! "Shells" don't sing. Much Love Jan xxx
     
  12. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    Oh thank you jAN. I shall always remember that - shells don't sing!! Thank YOU. Gxxxx
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,228
    #853 AliceA, Aug 16, 2018
    Last edited: Aug 16, 2018
    In GEMS the stages are compared to jewels, some times it seems people switch to and from these Jewel stages over a course of a day. So in this context, they are not shells but the Pearl has a shell. I see this as retreating into the shell as it protects. This is natural. In my book we ARE souls, we do not have a soul so cannot lose it. So we defend that precious soul by defending it with a shell. Like a pearl.
    I am assuming that I found the link on this site to Gems. I will look up the source, it is a kind and thoughtful concept. Take great care of yourself. love and hugs.
     
  14. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
    Oh now that is so so beautiful, so lovely. and such a healing thought and image. Thank you with all heart, thank you so very much. With love, Geraldine aka kindredxxxx
     
  15. Sad Staffs

    Sad Staffs Registered User

    Jun 26, 2018
    676
    Female
    Actually I absolutely love shells...
    I collect them, but I have to have found them myself, it’s cheating to buy them!
    So, how often is a real shell that you find on the beach empty?
    It usually has interesting things inside.
    And shells have gorgeous colours, shapes and textures.
    And everyone is different.
    My husband is a gorgeous shell, although I didn’t find him on the beach!
    He has all the interesting things, he is far from empty, and like a shell on the beach, I never know what I’m going to find from one minute to the next. xx
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,192
    Female
    Dundee
    This is the link to the Teepa Snow video clip on the GEMS concept -

    http://teepasnow.com/resources/teepa-tips-videos/teepas-gems/
     
  17. kindred

    kindred Registered User

    Apr 8, 2018
    2,140
  18. cumbria35

    cumbria35 Registered User

    Apr 24, 2017
    59
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,228
    Thank you, Izzy, saved me coming off the site. It is my husband's birthday today. He wanted to wear a tie, he really struggled to tie it. It took an hour he did not want help. He said he could not understand it, his coat choice was inappropriate but he said he felt comfortable in it. So fair enough. We met family, chose food carefully then home to sleep.
    Sometimes we have to realise that this is a perfect day, adaptations and more. Thanks for being there in background. It is a good feeling.
     
  20. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,192
    Female
    Dundee
    You're welcome. Lots of the Teepa Snow videos are interesting and many people find them helpful. You can access them all on that site.
     

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