1. annie.s

    annie.s New member

    Sep 28, 2018
    Difficult days! My dad 87 is primary carer for my mum 80, she has FTL dementia and has been steadily declining since 2017, we reached crisis point last Wednesday when the Dr had to do a home visit, called for an ambulance at 7pm because he suspected a chest infection. Dad stayed up to wait for the ambulance which arrived at 8 am the next morning. He has had no help to date. My sister and I who both live 2.5 hours away in opposite directions have been on hand when needed. So mum has been in hospital since Thursday and a ‘care plan’ is being put in place. The chest infection has been treated and as far as the hospital is concerned she is healthy enough for discharge but hey won’t do this until the care plan is in place... no problem so far, quite relieved actually...however I have no idea who is putting the plan together or who to speak to. I jus feel that they have fallen through the gaps! We’ve had no support since diagnosis and it was only a chance conversation which introduced dad to a wonderful volunteer from the society. Anyone know who I should be speaking to or any advice? I was under the impression that we should be involved in the discussion for the care plan but so far we have no idea where we are and it’s all been behind closed doors! .....I’m still furious that mum had to lie in her own faeces and urine for 13 hours!
  2. Splashing About

    Splashing About Registered User

    Oct 20, 2019
    Sounds very familiar to me. My mums discharge was coordinated by the complex discharge coordinator (well tbh we found a home but they sorted the CHC assessment)

    Phone the ward and ask for a named hospital social worker
  3. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    hi @annie.s
    I hope you have got somewhere with this
    I believe there should be a 'dementia' matron in each hospital (or some similar title) so it may be worth asking to talk with them as well as the discharge worker

    maybe consider asking for a discharge to respite to give your dad time to recover too; that was a tough night on both of them

    you might also contact your mum's Local Authority Adult Services to make them aware of the situation ... and the GP

    I'm glad the AS volunteer has been helpful
    there's also Admiral Nurses, who are there to support the carers ... if there isn't a local nurse, they have a helpline

  4. annie.s

    annie.s New member

    Sep 28, 2018
    Thank you!
  5. Pete1

    Pete1 Registered User

    Jul 16, 2019
    Hi @annie.s, they should be providing some home care support for your Mum - they do speak to family to understand the current arrangements (although you there isn't currently any external support) - the danger is Dad may be the point of contact and will be putting on a brave face and say they are ok (hopefully they would see through that!). There should be a Social Worker assigned to the case and linked to the discharge team - the Ward should be able to put you in touch. He/she should be organising the care support plus any potential adaptions for Mum's return home.

    Sorry your poor Mum and Dad had to experience that. Sadly I experienced that with my Mum after she had a fall, not quite the 13 hours but 5 or 6.....it is absolutely disgraceful.
  6. anxious annie

    anxious annie Registered User

    Jan 2, 2019
    Hi annie.s
    Sorry to hear about your mum and dad's struggles, and not easy for you and your sister caring from a distance.
    I think something called "reablement", a care package for 6 weeks comes into place after a hospital stay. This is something you don't have to pay for and could be carers coming in to help with personal care, meals etc.
    Before the 6 weeks is up your dad may want to contact SS for a needs assessment for your mum , to help him care for her, or this might be something the reablement team will do, I'm really not sure, but expect someone else on TP can advise on this.
    SS will help organise day centres/carers coming in to help. It all depends on your mum's savings as whether she will contribute financially or not.
    Your dad can have an assessment for his carer needs too.
    If you haven't done so already it's a good ide to get POA, for both your mum and dad. Best wishes going forward X.

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