Urgent is 6 to 8 weeks wait

Discussion in 'I care for a person with dementia' started by Reluctantcarer, Jun 18, 2019.

  1. Reluctantcarer

    Reluctantcarer Registered User

    Apr 14, 2019
    32
    apparently we are down as really urgent now following my call last week but all that means is we could be seen by the urgent (!) response team in another two weeks. Mum is practically bed ridden now. Legs & feet extremely swollen. Trying to get district nurse out but have to go through the GP. Everything takes so long & needs chasing up. & each bit of the problem is dealt with by a different team. It’s like being in a Kafka novel.
    As mum’s deteriorated her need for personal care has increased. I can’t give her the level of care she needs & deserves. But with an assessment still some weeks off we have to muddle through & I have to watch my mother decline.
    The incontinence team dropped off forms over a week ago. No name or number left & no ones been back to collect them. So I’ll have to chase that as well.
    How do you all cope? Mum’s lived with me for the last 15 years & we only had help once after a fall. At 90 she needs better care.
    This morning she was confused so that could be a uti. Can’t get a sample as every time she uses the commode she passes a motion.
    Sorry for the rambling rant but feeling very inadequate today.
     
  2. Trekker

    Trekker Registered User

    Jun 18, 2019
    51
    Female
    London
    I am so sorry it is so hard. You are definitely NOT inadequate, just overwhelmed. In answer to your question, we don’t cope, we merely survive on the edge of a precipice.
     
  3. la lucia

    la lucia Registered User

    Jul 3, 2011
    591
    I only coped by the skin of my teeth by being in what I called permanent Rottweiler mode :D (A polite Rottweiler).

    I refused samples for UTIs by suggesting whoever asked for one they were welcome to do it themselves - UTIs were diagnosed by symptoms or guesses even and followed up with blood tests if antibiotics didn't do the trick.

    The incontinence team asked loads of really silly questions and wanted fluid charts kept. I refused. 3 pads a day were issued for day & night. We used them all in the daytimes and I bought heavy duty pull-ups at night.

    District nurse is self-referral here (thankfully) I'd phone & leave my number they call back. Some were great some utterly useless. Suggest when they come you try enlist their help for the pads and any bum creams, dressings etc., to keep in the house.

    I was on the emergency domiciliary care list for 8 months just for 3 mornings a week. There's a recruitment crisis it was nuts. I only got care help after my mum was in hospital and I refused to pay the OTT rates of a freelance private carer to get my mum home. They mystically conjured up a Rapid Response team - home care employed by the NHS. Yes, you read that right.

    This stayed in place until agency care could be found. I refused to accept random timings, and constantly changing staff. We got there mostly. The ones we finally stayed with I called the A Team - they were excellent and I made it clear to them I thought that. They were fab with my mum. And with their help I managed to keep my mum home all the way and mobile.

    Basically, I learned to be super assertive, never left anything to chance and yes chased everything. You are right it can be Kafkaesque. It's certainly exhausting at times. What kept me going was certain professionals who backed me up and encouraged me. The good ones really do know the social care system is wrecked and will do what they can to help a family carer.

    Don't feel inadequate - you are in a responsible management role in a disfunctional system with a mostly demoralised workforce - it ain't you! Keep telling yourself this.
     
  4. Reluctantcarer

    Reluctantcarer Registered User

    Apr 14, 2019
    32
    Thanks @Trekker. You have it in a nutshell. Teetering on the edge
     
  5. Reluctantcarer

    Reluctantcarer Registered User

    Apr 14, 2019
    32
    Your pep post is well timed @la lucia. I’m just back from the hospital. Social services basically said I needed district nurses. GP says they can’t provide the level of care needed so now mum is being assessed in a&e with full battery of tests being run.
    I anticipate My next battle will be around discharge. Mum actually wants to go to a home as she finds it distressing to get the sort of personal care she needs from me. I also absolutely believe I can’t provide the overall level of care she needs - it’s obvious from her hospital admission there are nursing needs not just social ones. I have to make it clear that just sending someone in at unpredictable times to wash mum is not enough. I have to be strong enough to say sending her back here is not an automatic option. But there will be pressure from social services & no doubt the ‘invisibles’. But ultimately it’s about what’s best for mum.
     

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