1. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    ...When dealing with my "support services"?

    I'm hoping it's 'Crisis'. I've been using that one a lot today.

    I feel like a bit of a fraud as my in-laws have been in respite for a fortnight, but we've had two nights of no sleep at all and FIL fell this morning which meant I woke after an hour's sleep to find the paramedics downstairs. He was okay, thankfully.

    FIL has mixed dementia, MIL has vascular dementia. We had years of MIL wanting to go home etc. but she has settled nicely now and is quite content in her own little world.
    FIL was diagnosed a year ago and they've been living with us since then.
    FIL never sleeps through the night. Sometimes I get as much as 5 hours sleep, but that's about it. Last night he didn't sleep a wink. No sooner did we tuck him back into bed than he was up sitting on the edge of it again, hallucinating, delusional and generally all worked up. We tried everything. Nothing worked. He finally settled at 7am. OH went to work and I went to bed. The carer came in and found FIL on the floor at 8am. She called up the stairs to me but (funnily enough) I was in too deep a sleep to hear her.

    The psychiatrist prescribed Melatonin a few months ago, but it hasn't worked at all. The Dementia Link Worker told me about a month ago that the Dr would be in touch 'within a couple of weeks', but I didn't hear anything. I called today, because we are desperately waiting to try his list of magic meds, only to be told that the Dr left 2 weeks ago. So now we're back to square one trying to chase up a new Dr.

    The carer wasn't allowed by her bosses to stay on for extra time. They told her it was okay, that I would pick up the slack!
    I've left MIL in bed for a lie in as she didn't get any sleep either. I'm just about to get her up now. FIL is sitting in his chair dozing. I've tried everything to keep him awake, but no use.

    The GP just phoned (Paramedics phoned her): 'How is he now? Ok? Oh well I don't think there's anything to be gained by me visiting...'
    She's probably right as she's fairly useless.

    We still don't have a social worker. They closed our case as there were 'no problems'.
    The previous social worker ignored our request for SDS.

    And to top it off, the day centre phoned this morning to say that they wouldn't be picking FIL up as their bus has broken down.



    Does anyone have a spare rock I can crawl under?
     
  2. nitram

    nitram Registered User

    Apr 6, 2011
    19,246
    Male
    North Manchester
    "What's the magic word...
    ...When dealing with my "support services"?"


    Some phrases can be useful:-

    LA has duty of care to a vulnerable adult posing a danger to themselves and/or others.
    LA will be held responsible if they are not diligent regarding this duty.
     
  3. SisterAct

    SisterAct Registered User

    Well so much for the 'support' services. As if the life of a carer isn't emotional enough they have no idea how much their lack of service adds to the pressure of caring for someone with dementia.

    I hope you and OH are ok after this ordeal and not too worn out.
    There would be a few words I would like to say but they definitely wouldn't be 'magical' .

    Thinking of you both and your in laws.
    Luv
    Pol X

    Ps. Perhaps Fil had some kind of an infection?
     
  4. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Thank you. I forgot about those.
     
  5. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Thank you.

    Unfortunately (IYSWIM) FIL had bloods ad whatnot taken yesterday and they came back clear. The GP saw this as good news, but I couldn't help thinking that at least an infection could be treated.

    I've just realised that I have nothing for their lunch as they're supposed to be at the day centre and it's my shopping day. I'll have to risk running over to the corner shop and just hope for the best that FIL stays put for three minutes or so.
     
  6. joggyb

    joggyb Registered User

    Dec 1, 2014
    119
    also, 'at risk'
     
  7. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Added to my list.

    Thank you.
     
  8. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,962
    Brixham Devon
    Another phrase is; 'I am heading for carer breakdown-if that happens I will obviously have to withdraw from my caring responsibilities'
     
  9. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,987
    Suffolk
    ...from ALL my caring responsibilities......

    (((((Hugs)))))
     
  10. nitram

    nitram Registered User

    Apr 6, 2011
    19,246
    Male
    North Manchester
    "..from ALL my caring responsibilities......"

    Don't acknowledge responsibility, the LA are legally responsible.

    .....I will obviously have to cease caring.
     
  11. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Mission accomplished. Lunch now cooking whilst I run back and forth to the living room to get FIL back to his chair, so now the door is open and I'm repeating 'Stay there sweetheart, I'll be there in a minute with your lunch' on a loop.
    Sometimes it works. :D

    On the bright side:

    1. He didn't disconnect his catheter at all last night, so I don't have extra bedding to wash today.
    2. I can cause torrential rain just by donning my jacket. I may offer my services to drought-stricken countries at some point in the future
     
  12. SisterAct

    SisterAct Registered User

    What a Star you are and I love your sense of humour.
    Please look after yourself too.
    Luv
    Polly x
     
  13. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    #13 Katrine, Nov 13, 2015
    Last edited: Nov 13, 2015
    I remember you saying you had got nowhere with your application for SDS, but didn't comment at the time because my experience with the same LA was 7 years ago and there's been a big restructure since then.
    It would appear that "Plus ca change..." :rolleyes: In case it will help you decide what to do, I'll tell you the story, which involves professional arrogance and downright deceipt. :(

    In Jan 2008 I took my mum out of hospital, and brought her back to her own home with live-in carers, privately funded. SS gave us zero help, and it was clear that they strongly disapproved of private care because "only carers we approve have the proper training". Their only solution for my mum was a NH but there was nowhere in the area that could meet her needs and had a vacancy.

    We found out, once we had notified the hospital that we were removing her, that they had kept her in hospital for 4 weeks after she was fit for discharge because they were trying to find a NH bed. This was against the wishes of my brother who had welfare POA and had told them she would be going home once she was fit. Because SS and the hospital staff considered this not to be in her best interests they lied to the family and told us she wasn't fit for discharge.

    However, once we had made the decision they couldn't wait to get rid of her because they needed the hospital bed. A problem of their own making. If they hadn't lied they could have freed up the bed weeks earlier. I asked the hospital SW if my mum would have ongoing SW supervision. "No, why would we do that? You have arranged private care so she is discharged from our books."

    I accepted what she said at first. Then a friend in England (where I live) told me about Direct Payments, aka Self-Directed Support. I discovered that SS should have offered this, and were therefore in breach of their statutory duty by keeping silent. I began the application process. For 7 months I was kept in a holding pattern by SS, being told that my mum's name was on the list for the weekly team meeting. Every week I was told the same thing. They refused to give me the name, email address or phone number of any manager. I was only allowed to speak to the Duty SW.

    As I expect you already know, you cannot be assessed for SDS until you have an allocated SW. You won't get a SW until more urgent cases are dealt with and you move up the waiting list for action. This never happens when you are considered to be a non-urgent case. My mum's needs were being met, privately, so she would never reach urgent status.

    Is this sounding familiar?

    Eventually I phoned the Mental Welfare Commission, who were very helpful. I was advised to take the matter up at a higher level. I emailed the Head of SS with my complaint, quoting legal chapter and verse. Within hours a SW was allocated to my mum, and within a few weeks she had her assessment and was awarded SDS. The payments were backdated 7 months to the date of my original service request.

    As I said at the beginning, the restructure at your LA means that the application process may now be different. My mum's Direct Payments now come from the NHS, because it is an area where joint services are in place. However, if you are also stuck in the no SW loop, a complaint to the LA would seem the best place to start. They are totally in breach of their statutory duty IMO, but are still getting away with it. It is not your in-laws fault that SS is short-staffed and underfunded. They deserve the funding they are legally entitled to receive.

    You might also find it helpful to talk to someone at the Mental Welfare Commission. They have regional officers, so someone will have specific knowledge of your area.

    I hope I haven't depressed you too much. I wanted to encourage you to kick up a fuss. It worked for us. It is hard to overcome ingrained respect for the authorities, and due process; we continue to have expectations that they will play fair, despite the obvious evidence to the contrary. :mad:
     
  14. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    We have been alternately been patient and kicked up a fuss. We try to remain hopeful that at some point someone will do their job properly. *Sigh*

    I have been working my way up the chain of command for home care. The carers are (mostly) great, but their office is just awful. We have a different carer each day for MIL. Continuity of care my a**e!

    The day centre have been putting obstacles in our path from day one and their manager is openly hostile towards me since I took on care of my in-laws when she insisted that we couldn't do it because we 'weren't trained'.

    The GP is of the lesser spotted variety and once told OH 'Not to worry too much as FIL probably won't last much longer at his age'.

    The SW was only interested in checking on what we do, trying to make us adhere to care home regulations and basically investigating the day centre's accusations against us. When they prove to be false the SW closed our case and signed off on us, completely ignoring any concerns we had raised and our request for SDS.

    The Psychiatrist didn't show up at all until a few months ago and has now left which means we're back in a holding pattern with no meds.

    The care commission (or whatever they're called now) have a backlog of several months so complaining there seems pointless.

    We don't have a CPN

    The Dementia link worker is great, but powerless and doesn't seem to understand that I'd rather speak to real people in the same(ish) situation on here than have a phone call from someone who is trained to speak to me. Also seems to fail to understand that I just can't schedule a phone call unless it's on a day centre day and then I'd rather go out and see my own friends if possible.

    The community nurses skip in and out of here almost silently. I have to listen very carefully for them because there are supplies I can only get through them and if I miss them it's a real pain. It took us 6 months of fighting to get a hospital style bed because there was 'no clinical need'. So I was bed bathing FIL (doubly incontinent) on a divan. I'm 5' 10". My back was not entirely happy about this.

    I was speaking to the paramedic this morning. He is in the same boat with his MIL. He told me not to get FIL up when he falls during the night, to call them every time to prove a point.


    Ahh... I never did mind about the little things. :rolleyes:
     
  15. Katrine

    Katrine Registered User

    Jan 20, 2011
    2,839
    England
    Here is the link to the Mental Welfare Commission: http://www.mwcscot.org.uk/
    It is an independent body specific to Scotland. I hope they can help you to target your complaint effectively. You are being blocked by so many different people in authority, while working hard as a hands-on carer.
    I am not surprised that you are running out of energy.

    That GP's comment is truly shocking. We are so fortunate in the excellent care my mum receives from her local GP practice, who truly care about her. The LA are, however, again in breach of their statutory duty to provide a supervising officer (MH SW) because my mum is under our Welfare Guardianship. I don't care because that wouldn't actually benefit my mum in any practical way, but it still irks me that SS don't actually care about my mum, or their legal obligations.

    Bitter? Moi? :rolleyes:
     
  16. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    I've been poking around their site since I read your post, thank you. :)

    One Note is now busting at the seams with clips of text from there. I feel sort of armed and dangerous. :D

    My OH has POA for the in-laws. SS seem to see this as a cue to wander off with their fingers firmly in their ears.
     
  17. Biggest Fairy

    Biggest Fairy Registered User

    Jan 26, 2015
    37
    Inverness
    Right! Let's see how tonight goes.

    As I said earlier, FIL was awake all of last night. He did doze a bit today, but not as much as you might expect.

    The night carer came and put him to bed at 8pm. She left the bedroom door open, so I popped through at 8:40pm to close it thinking he'd be asleep.

    Nope.

    He's sitting bolt upright in bed faffing with the covers to the point that they were almost off the bed and muttering about how his 'real home' is in North Berwick, but he knows that he's not there now and he's in the other place he can't think of the name of'.

    I explained that he's in his own bed, safe etc. I covered him up, but he refuses to lay down.

    I'll turn the baby monitor on in a minute so I can respond quickly enough to stop him if he starts getting out of bed. I don't want him to fall again.

    I really hope he settles, otherwise I may spend the night through there in an armchair and my back is grumbling just at the thought.
     

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