1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

Dreading my first post holiday visit

Discussion in 'I care for a person with dementia' started by Trekker, Aug 16, 2019.

  1. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    I have just arrived back in London, after visiting my OH’s parents in America and feel sick with anxiety about visiting my parents, both PWD. Our trip was restful, apart from the dementia dreams every night, and the frequent tears and sadness that too often overwhelmed me, and by the end I was starting to feel able to be happy. Now I am back and there is no ‘good time’ to call or visit and I wish I never had to. Phone calls are a nightmare. Either they aren’t answered or if they are, and my father can’t hear me (wrong ear), I end up having to scream in an attempt to be heard. Or he does hear me (phone to the better ear) and immediately tries to put my much more confused mother on the phone, who then starts screaming resistance to the idea across the flat or else comes to the phone demanding I do something impossible, like going back home to her ‘real family’, before slamming the phone down or screaming abuse/complaints at me. So better to visit? But when? Whenever I choose it is apparently ‘the worst time to visit’. First thing? They would be very angry and confused and wouldn’t understand why I was waking them and nor would I. Lunchtime? The best time, in theory, but also when they get up, which also means their first opportunity to fight and scream, with me or the carers in the middle. Just after lunch? Maybe, if you can time it just right, and my mother hasn’t just thrown her meal in the bathroom bin in fury, or gone back to bed after 10 minutes, or isn’t screaming at me for never visiting, as soon as I arrive. Late afternoon? See first thing and lunchtime, ie all times are ‘the worst time’. Maybe I am just too selfish for this role. Post holiday, I feel a bit sane, quite happy, and don’t want it to end. I also feel guilty, worried about my parents, and anxious as hell. Rant over. Sorry.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    I found phone calls more and more useless as dementia progressed @Trekker and actually stopped using them.

    My husband used to pick the phone up and immediately say `Speak to Sylvia` because he couldn`t cope with it.

    I would try mid morning to visit, around `coffee time` but if the screaming and shouted started would turn around and walk out.

    Your parents sound frightened and even though reasoning with them is unlikely to help, a grand gesture might be worth a try.

    I used to walk away from my husband , albeit into another room , when he became aggressive. I told him, quietly , I did not deserve to be spoken to in that way when I was trying to help and then I left him alone.

    Sometimes it worked and sometimes it didn`t.

    All I can say is there is no way you can help them if they are so aggressive towards you. All you can do is check everything is in order, they are unlikely to come to harm, they have enough food in etc. and then leave.
     
  3. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thanks you Grannie G for your kind and sensible advice x
     
  4. Bod

    Bod Registered User

    Aug 30, 2013
    1,134
    I fear they are at the point of needing much more care than they realise, or will agree to!
    A start may be to have a medication review by their GP(s) to ensure the correct levels are being used.
    A quiet word with the Carers, as to the situation when you are not there, may be helpful.

    Bod
     
  5. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you, Bod. Yes, they need far more care than they will agree to. Various referrals have been requested. My brother and I struggling to know what is best, knowing the situation will only get worse.
     
  6. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Sadness is the overwhelming feeling, and despair at seeing them suffer and feeling unable to make any difference. My in laws are 10 years younger and doing relatively well compared to my parents, although one has early Parkinson’s, they are 6,000 miles away, and we are their only relatives. Both I and my OH can see a future where my parents eventually get peace only for his to be next and then us, with no respite in between. So many posts speak of caring for a partner, having cared for a parent. I know this is just life but I am scared of what the future holds. I know it’s time to grow up but would prefer the bliss of ignorance.
     
  7. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    919
    My mother-in-law had a personality disorder most of her adult life which eventually became dementia. Even before the dementia diagnosis, she would demand my husband and I should arrive at her home immediately after landing at Heathrow. We would lie about when we were coming back, always saying we were away a couple more days. This was to give us a breather from her incessant demands. If we had told her the truth, she would have been on the phone as soon as we were through our door. When the dementia set in,we just carried on with this routine, telling the carers and other professionals we were still away. Her befriending service rang me once about something, thinking we were still out of the UK. In fact I was at home watching the television and I didn't say otherwise. I've no regrets about the lies
     
  8. Bod

    Bod Registered User

    Aug 30, 2013
    1,134
    Don't be afraid to let situation get worse, but make sure the GP, all other health workers, and social services know, and are being expected to to do their duties.
    If it comes to them being "Sectioned" under the mental health act, that could be the best thing for them. Getting the help they need, in safe secure surroundings. They will have no choice, however it is done in their best interests.

    Bod
     
  9. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you @Rosettastone57 Found out from my brother that he told them I was arriving home a day later than I was, so won’t know visit until tomorrow. Will remember your advice for next time. They told my brother I never visit, prioritising my OH’s parents in America over them. If only. Instead I deal with my parents’s issues constantly, while my husband only gets to help his lovely parents for a few weeks a year, not easy on him or them as he is an only child. Hopefully they’ll be pleased to see me, they are sometimes, but mostly they blame all the limitations of age and infirmity on me, the common lot of the person closest by. For years I used to be on constant beck and call but had to withdraw for my own health, once they moved into extra care housing 9 months ago. Ah well, sigh.
     
  10. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Hopefully it won’t, but thanks for your advice.
     
  11. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    A wonderful surprise today, when I visited my parents. They were happy, kind, and yes, confused, but happy, appreciative, like them a year or three ago, just more confused. Maybe absence makes the heart grow fonder, or my mum’s risperidone is making all the difference. Either way, I haven’t felt this happy in ages and thought all you kind people would like to know :)
     
  12. nellbelles

    nellbelles Volunteer Host

    Nov 6, 2008
    8,334
    leicester
    So pleased you had a good visit today long may it continue for you
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    That`s wonderful.
     
  14. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you! Xxx
     
  15. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    It is! Thank you xxx
     
  16. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,237
    Female
    Dundee
    That's great news @Trekker! Long may it continue!
     
  17. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Thank you! Xxx
     
  18. Bunpoots

    Bunpoots Registered User

    Apr 1, 2016
    2,833
    Nottinghamshire
  19. Trekker

    Trekker Registered User

    Jun 18, 2019
    157
    Female
    London
    Me too! Xxx
     

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