1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    872
    Male
    Newcastle
    Isn't it sad (and plenty of other emotions too) @Rosie56 that, far from giving your mum some support when she needed it, her neighbours chose to meddle in what was a private matter in which their opinions were not wanted and counted for nothing. Too many people are prepared to be critical without knowing or caring about facts. I hope that things are better for both of you now your mum is safe and being looked after in a care setting.
     
  2. Rosie56

    Rosie56 Registered User

    Oct 5, 2013
    75
    Interesting to hear from someone who's had the same thing, Sirena. I think you're right - they just don't want to see it (and because they themselves are getting old, they don't want to think about their own possible future). I'm quite sure there will be no contact between themselves and Mum now she's in the home. I agree that the OP's 'stepdaughter' is showing hostility and to be honest, I would have told her to sling her hook some time back, but I wonder if some of that hostility is fuelled by unconscious guilt.
     
  3. Rosie56

    Rosie56 Registered User

    Oct 5, 2013
    75
    Things are getting better, thanks (apart from legal complications over trying to sell Mum's house, but we'll get to the end of those at some point). It's been a real lesson for me on how some people will sit in judgement while knowing nothing at all about the situation. A few years ago one of these judgemental neighbours buttonholed me as I was bringing Mum home in my car from her day care centre, and began accusing, blame-slinging and shame-slinging because my mother 'was going round in the same shabby clothes' and telling me I should take her on a shopping trip and get new ones. I explained to her that a) my mother had loads of practically unworn clothes, but it was in the nature of the illness that people sometimes want to wear the same ones again and again, and that the carers were making sure they were clean. Also that b) Mum was doubly incontinent so I couldn't really have her trying on trousers in a shop, could I? She looked shocked at this - she hadn't realised about the incontinence. I said, 'So you see, you don't know everything, do you?' At least now Mum has moved into residential care I won't have to meet those harpies again.
     
  4. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,893
    Female
    Yes I thought the same about them not wanting to think about their own possible future. There was one lovely lady who remained loyal and still saw my mother regularly - her own husband had Alzheimers so she had a much better understanding.
     
  5. JillyB61

    JillyB61 New member

    Aug 3, 2019
    4
    I have run out of answers to the repeated overly sincere 'how' s your mum'? She is in relatively good health, fed, clean and keeps regular routines. Thanks to her Care Home team. How do I explain happy days followed by deep despair, asking after a brother 25 years dead, looking forward to xmas (in March) cutting off clothing name tags with nail scissors and repeatedly packing her room & clothes. I do sense underlying concern and fear that this may someday happen to us all but feel I have to reassure that person that mum is absolutely fine when in fact this is not totally true - yet more guilt to add to the pile!!
     
  6. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    872
    Male
    Newcastle
    "Absolutely fine" is a relative term @JillyB61 . My wife has good, bad and indifferent moments every day. No longer seeing us together, many people have stopped asking after her welfare. Of those who still ask there are some who seem to have a genuine interest/concern and I am pleased they do. I give them an honest answer along the lines of "as good as we could hope for". To the others I don't say much other than "she's fine". They ought to be able to work out that she wouldn't be in a care home if that were really true. There are some who don't seem to have noticed that she isn't here or maybe feel that they have left it too long to ask. People sometimes don't know what to do for the best.
     
  7. Sirena

    Sirena Registered User

    Feb 27, 2018
    1,893
    Female
    As another member on here once said, people with no experience of dementia think it means someone being a bit dotty and forgetful, they have no idea of the real extent of the illness. I have found that people politely ask about my mother but they do not want to hear the answer. Depending on who asks, I either tell them the truth that they didn't want to hear, or I say that she's perfectly happy in the care home (which she is, as far as she can be). Either way I don't feel any guilt about it - it makes no difference to those asking what my answer is, or whether it's accurate.
     
  8. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    872
    Male
    Newcastle
    But does anyone ask about how the carer is feeling? Or to put it another way (with acknowledgements to Judie Tzuke):

    "Fools, they thought I was alright
    They couldn't see that I was dying inside
    Fools, don't turn on the light
    I can't bear to see their faces when they see me fall to pieces"
     
  9. Jaded'n'faded

    Jaded'n'faded Registered User

    Jan 23, 2019
    528
    Female
    High Peak
    Oh, @Sirena this is so true! I recall a particularly unpleasant woman (friend of a friend) who 'knew all about dementia' because her aunt had had it. She knew nothing. But she did like to offer her nuggets of wisdom like, 'you should take her round the shops - that's what she likes,' or 'get her to keep a diary then she'll know what day it is'.

    I finally lost it with her when she asked me, 'Is your mum better now?' I said, 'Yes, she's out jogging most days and is starting a degree with the OU.'
    ' Really?' she said.
    Me: 'No, you silly ***! Dementia is terminal - she gets WORSE every day!'

    She's avoided me since, for some reason :D:p:D
     
  10. TNJJ

    TNJJ Registered User

    May 7, 2019
    792
    Female
    cornwall
    :)
     
  11. Olliebeak

    Olliebeak Registered User

    Sep 13, 2014
    75
    Buckinghamshire
    I was having a bad day but that made me laugh!!!
     
  12. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    Hi, I know how you feel. The daughter and her family have gone away for a week and had invited my OH, not me, but he declined. They rang him to see how he was and I would love to have piped up, he’s safe, I’ve locked him in a cupboard under the stairs! He’s actually been out and about with me, going to places he doesn’t want to go to because I’ve been told by the family I can’t leave him for more than 2 hours.
     
  13. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    I’m at the end of my tether, not because of my lovely OH but his family. They have taken him to their solicitor and got him to sign over POA for both finances and well-being ( without informing me) and have since made my life a misery. My daughter took a loan off my OH and he’s not worried that she’s not in a position to pay him back yet but I get targeted constantly about this. Today, they said they’d heard she was buying a new car when she owed them. The fact is that her 4 year finance is finishing and she had to renegotiate new finance with a new car. She doesn’t have a wad of cash for an upgrade!!! How much more bullying can I take???
     
  14. Agzy

    Agzy Registered User

    Nov 16, 2016
    874
    Moreton, Wirral. UK.
    As the sons of my OH ( we are not married either) have found out in this past two weeks since I had a mini stroke, life without me would be devastating for them as visiting every now and again just wouldn't do. Mum is a long way from a care home level and care would have to be done by them alone, something I know they never considered when criticising me for going on holiday and disrupting their lives. In a diplomatic way just ask the ‘conference’ what they would do without you.
     
  15. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    Hi, so sorry to read you’ve had a mini stroke. I really hope you get the chance to convalesce properly.
    I did ask hypothetically, what would happen if they drove me away and I had a very quick and curt response from the daughter saying that they’d organise everything and would be absolutely fine! ‍♀️ They have no thought for his personal happiness- just pay for care I really don’t think they know how much I do to try to keep his life as normal as possible. He’s getting irritated by the fuss.

    Tomorrow, I’m going on the last of the events I organised last year and paid for, and it’s overnight plus next daytime. I have prepared a full itinerary for him with my family helping out along with his friends and his daughter in law- she’s lovely.

    My OH still holds a great conversation as I’ve said before- he just can’t do times or remember what’s coming up or what’s just gone. I’ve written a timeplan for him to refer to. Fingers crossed but you can tell I’m not relaxed as I’m writing this at 4.14am x
     
  16. MrsDoyle

    MrsDoyle Registered User

    Mar 28, 2019
    52
    Female
    East Mids
    Once again, it’s the middle of the night and I’m wide awake and upset due to accusations from the family. My OH doesn’t care so much about his appearance any more and he used to be so smart. Despite constantly trying to make sure he’s dressed appropriately, I missed the fact he’d put on a pair of trousers that should’ve been in the wash. I’ve been pulled up for that on the weekly visit by a family member and told that my care is poor. The other day, he went golfing and needed a change of clothes. We discussed what he should take and I had to leave the house ten minutes before he was picked up. ( I was taking advantage of the fact he was out for the day, to see friends). Unfortunately, he took a scrunched up shirt and spare trousers and I have been berated for not packing it for him. He came home looking dishevelled in that his shirt was hanging out but I was not invited to the golf day so I couldn’t be there to tuck it in! They also criticised me because I hadn’t packed aftershave.
    He had the same kind of event the next day and put a spare shirt and jacket in the car on a hanger without my needing to prompt him. I thought it was lovely he could still enjoy himself but I’ve been told I don’t care and should do more.

    He’s happy, wants me to ignore them but it’s so hard.We have lovely conversations and we’ve recently been abroad for a while which was so peaceful but I’ve come back to the same old abuse. I happily do everything from meds, providing meals, looking after the pets- all the normal stuff- to driving him everywhere he wants to be because his license is revoked, answering the same questions tens of times a day, doing all the things around the house he used to do and sorting out stuff he makes mistakes with or has forgotten to do. By the way, he gets so frustrated and swears all the time but not at me.
    I have some other major issues going on in my life and I am on the edge of depression. My mind is not as clear as it should be so I missed the ‘smart factor’ one day. They say there should be no excuses for any lapses and everyone must help more with routine, meals, love and care but specifically from the partner he lives with. I think the last sentence was added to eliminate them from extra care duties and to make me feel inadequate.

    I could do with support rather than being criticised for trying my best. I realise my best will never be good enough for the keyboard warriors although I admit I’ve never been the most domesticated Mrs Woman. But then are they right? Should I always be one step ahead, second guessing how the dementia will affect him each day? I’ll be so tired tomorrow but will still have to think for two...
     
  17. Donkeyshere

    Donkeyshere Registered User

    May 25, 2016
    315
    channel islands
    Hi Mrs Doyle
    Forget the accusations, a rumpled shirt or two is nothing to worry about in the whole scheme of things. Remember you are doing a fantastic job regardless stuff what they say they are not in your shoes. People are quick to criticise but I bet if they were doing what you do they would give you a medal. I've learnt that you will never please everyone and as you say thinking for two is quite draining Try not to worry so much about those who feel they wish to give negative comments they are not worth you losing sleep over. Just think of yourself doing such an amazing caring job.
     
  18. Starting on a journey

    Starting on a journey Registered User

    Jul 9, 2019
    51
    Mrs Doyle
    I would suggest that you forget the horrible things his family say, forget all thoughts about doing a poor job.
    Your partner has all he needs, your love and practical support. It is wonderful that he can still play golf and you can get a break. Take those breaks and enjoy. If his family are worried about his sartorial presence then perhaps they can supervise his wardrobe. Words fail me.

    Take care Mrs Doyle and enjoy your freedom when you can.
     
  19. Woohoo

    Woohoo Registered User

    Apr 30, 2019
    385
    Female
    South East
    Wow what a lovely lot they are @MrsDoyle ! Hope they never need any help in the future. As Donkeyshere said , ignore it, what a patheticly trivial thing it is, he is fed , cared for and kept safe, amongst all the other things you do for him. It’s a shame they can’t walk in your shoes for a couple of weeks , that would change their attitudes. You are doing a fab job and could do with support not criticism but I guess you will never get that from them . Take care x
     
  20. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    545
    Female
    Basingstoke, Hampshire
    That's what counts, never mind the selfish lot who have nothing better to do than try and put you down. Don't let them.
     

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