Mother scared about respite care

Discussion in 'Middle - later stages of dementia' started by Londoner87, Apr 29, 2019.

  1. Londoner87

    Londoner87 New member

    Apr 29, 2019
    Hi all,

    I'm new here. I signed up today. I saw this thread whilst I was searching on Google and wanted just to share my experience. I am hoping it will help me feel better.

    I am 31 and I care for my mother who was diagnosed with variant primary progressive aphasia (svPPA) (semantic dementia) in 2016. I am supposed to be going to Portugal on Wednesday and have been asking for respite care before Xmas.

    A home hasn't been found yet as the social worker didn't complete the forms until I reminded her. My mother does not want to go into a home as she is scared. I'm scared about it.

    The fear isn't the real issue, its the guilt. I've always given everything up for my mother. Friends, Uni, jobs etc. She cannot understand why I wouldn't just cancel the holiday to stay with her. She struggles to communicate and I just watch her looking sad about the fact that I am leaving her and that makes me want to cancel my holiday. It doesn't help that the social worker is useless ~(I am a social worker so that's odd to say) and doesn't tell me anything unless I chase her down.

    There are those odds moments when I wish I could just disappear. If I did, I would not need to deal with the guilt, the decisions, the responsibility, the terror, the lack of hope. Of course, I cannot disappear because I feel guilty about doing that.

    Reading this has been helpful to help me know that I am not a terrible daughter. even though that is a daily feeling. Funny that, I care for her on my own, with no family, whilst working full time and I feel life a failure.

    Londoner x
  2. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    Hello @Londoner87 welcome to the forum
    There is an expression here on TP, the guilt monster who sits on your shoulder, he is not allowed to stay or have any input on the carers life.
    So long as the PWD is well looked after and safe all carers are allowed a break from caring.
    I’m sorry the SW is useless, ours was too!
    So my advice go off and have some ‘ME’ time you will be a better carer after a break.
    Now you have found us I hope you will continue to post and tell us about Portugal!
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hello @Londoner87
    and welcome

    you certainly are not a bad daughter or in any way a failure, you clearly have done so much for your mother

    I'd say it's about time you put yourself first and enjoyed a holiday - I am very much hoping that respite has been sorted out and you are packed and ready to go
  4. imthedaughter

    imthedaughter Registered User

    Apr 3, 2019
    I hope you are able to look forward to your holiday... If it helps when my dad had to go into a home for respite following some hospital tests the social worker literally sorted it out at 4pm the night before so who knows if it's standard practice to do this... Hopefully it's been sorted. You sound like you deserve a lovely break. Take care
  5. Cazzita

    Cazzita Registered User

    May 12, 2018
    OMG, you are an AMAZING person who is doing SO much! Don't feel guilty, you don't need to. SS will have to sort out respite. I hope you get the break you need - your mum will survive and so will you but you will be rested afterwards and have more strength to deal with what's ahead. x
  6. Susan11

    Susan11 Registered User

    Nov 18, 2018
    And when you go on holiday don't take your troubles with you. (Easier to say than do I know) Put all your worries in a "box" , put a lid on it and leave them firmly behind you and enjoy yourself. You definitely deserve it.
  7. pevensey

    pevensey Registered User

    Feb 14, 2012
    South East Coast.
    Hi Londener8, you sound like an amazing daughter so you have nothing what so ever to feel guilty about, but I can feel for you about feeling guilty, even though you really shouldn't do. I'm in a similar position I want to go to visit my sister who is about 4 hour drive away my daughter had said she will take me and we would stay 2 nights, but I definitely couldn't leave my OH and I have no one who could come to stay with him, I REALLY KNOW he would refuse to go tomrespotenforncouple days and to e truthful I'm scared to bring the subject up knowing what his reaction would be. But please, londenef8 go on your well deserved holiday, a d relax an enjoy it all , you will come home happier and refreshed.
    Take care and let us all know all about your holiday when you get back.

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