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.

  1. meester100

    meester100 Registered User

    Sep 5, 2016
    2
    This is my first post..I have found myself in my worst possible nightmare my mum has FTD diagnosed 4 years ago at the age of 60. My dad a fit healthy 64 year old and mums carer has just been diagnosed with stage 4 lung cancer. Mum is currently in respite and has been for 12 days now. We were advised by staff and social worker not to visit initially as not to upset her..Dad has just started treatment and its hitting him for six. I think its partly due to the exhaustion of caring for mum, the guilt of putting her in respite and the cancer..hes like a lost soul that seems to have almost given up. We have no plan in place for m mum when she comes home but I dont know how on earth we will cope . I am due to visit mum today as suggested now by care home as shes been asking for Dad..she is unaware of his illness and wouldn't understand anyway. I dont know what to do for the best and just needed to vent...sorry. I cant honestly believe that I am in this situation with two relatively young parents I'll...
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
    Hello @meester100, you are welcome. I hope you find the forum to be a friendly, informative and supportive place.

    I'm not surprised that you need to vent as you have such a lot to deal with there.

    I hope that others with similar experiences will be along to advise later.
     
  3. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,839
    N Ireland
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,125
    Kent
    This is dreadful for you @meester100 and I can well understand how overwhelmed you must feel.

    Do you think your mum could be told your dad is ill without going into detail about the severity of his illness. It would explain why she is in respite care. You could just say dad is having tests.

    I`m not sure how much insight your mum might have but you know so could frame the excuses according to what she may and may not be able to take in.

    At the moment, you are the most important person too. You have so much to contend with. If you can, allow the professionals to get on with their jobs in caring for your mum and dad and try to use this time to have a good think about what you can manage. You can`t make either parent better so try to work out what is best for all of you.

    When you visit your mum today perhaps you could ask if the respite care could be extended to give you some breathing space.

    I`m so sorry about this. Your parents are young and so must you be.
     
  5. Delphie

    Delphie Registered User

    Dec 14, 2011
    1,250
    My heart goes out to you. The emotional impact of it all must be huge and then there are the practicalities to suddenly have to deal with too.

    My advice is to make residential care permanent, or at least a place for the foreseeable future. I know it feels like a massive step but your Dad simply can't look after her at home, and even getting carers in (though worth trying) might be too much for him. He needs peace and time to get better, and it's a tough road. All the stresses that go with hands on dementia care won't help.

    Obviously their funding status will dictate how things move forward. If they're self funding and you like where she is, see what's possible there.

    Oh, and guilt is a monster we've all met and there's a TP stick around for beating it off with. Your poor dad is dealing with so much so will need reassurance that he hasn't let your mum down in any way. He's ill not taking a luxury cruise around the world. And you can all continue to be her 'carers', even now she's no longer at home. The hands on stuff is not down to you or your dad now but she still needs you and you'll all be there for her. Lastly, when she asks for dad or to go home, just fib. He's coming later, the doctor says she needs a few days at this lovely place to get her strength back, that kind of thing. Gentle love lies as we call them.
     
  6. meester100

    meester100 Registered User

    Sep 5, 2016
    2
    Thank you so much all..it all makes sense what you have advised but so hard to think clearly right now. I think we now realise permanent care has to be the next option but that is proving to be a minefield as our locality undergoing review so very few permanent spaces available that would be suitable for Mum. Shes quite independent inmany things and that's what many of the facilities struggle to cope with..they seem to prefer the more compliant residents who sit in a chair and sleep. Such a lack of facilities for younger sufferers!! I. Sure there are many out there who feel the same
     

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