1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Appledoorn

    Appledoorn Registered User

    Dec 26, 2015

    I'm new and need a moan!

    The 6 ½ hours I spent in A & E last night with my 89 year father has to be the lowest point so far in the 6 weeks of living hell I (and he) have endured since it first became apparent that he had (so far undiagnosed) dementia.

    I fully understand that the NHS casualty doctors are over stretched and underpaid and need to get through the disparate group of people presenting themselves for treatment on a Sunday night quickly and efficiently but it has to be the worst place in the world for a person confused and disorientated trying to hold on to what is left of his sanity. On several occasions I almost turned his wheelchair round and left, feeling that the deep wound over his eye sustained in a fall in home 30 hours after being discharged from hospital, would heal faster than the feelings of desperation and despair. But I stuck it out, thinking that is what good daughters do. And after stri strips were applied, an ECG , urine test and chest Xray undertaken we returned home at 4am.

    In 6 weeks he has gone from being more or less able to care for himself to someone who has 4 carer visits a day and who spends all day huddled on a hard kitchen chair by his fire. And we won’t have an ‘official’ diagnosis until he visits the memory clinic in a month’s time. I wonder if there will be any dementia specific help then. Even with 4 carer visits a day he managed to overdose on his medication yesterday because ‘they only support with medication in an official dossette box prepared by the pharmacy’. This, I discovered today, will take 2 weeks to set up.

    I work and also support my son who lives with me with his little daughter at weekends. He is helping where he can but finds the dramatic change in his grandad and the lack of any really useful help upsetting and frustrating. As an unmarried only child I am struggling physically with the constant running around but it is the huge emotional pain I find most difficult. I don’t know my dad any more but I see in his eyes the fear and anxiety as he comes to the realisation that what is happening to him isn’t going to get better. And that destroys me. The worst moment is when I wake up in the morning and realise it is really happening.

    Of course all of you are experiencing the same thing but I needed to share my feelings on this sleep deprived evening.

    I will be getting him a more comfortable chair to sit in; pestering the social worker for an OT home assessment to help me identify the fall risks and write more notes to the carers so they get a better idea of what he likes to eat; where it can be found in the house and to try and pursued him to change his clothes more than once every 3 weeks.
    Thank you for listening!
  2. Adcat

    Adcat Registered User

    Jun 15, 2014

    It's a nightmare this caring business. I really identify with you, the disbelief this is happening and the tiredness awful. I don't know what else to say except you have both my sympathy and empathy.
    Take care
  3. fizzie

    fizzie Registered User

    Jul 20, 2011
    I am so sorry
    There are some things you can get going which will help with cash flow
    ...on a practical level

    also the social services assessment might give you access to a day centre which would at least be somewhere safe he could go to during the day and our one is brilliant, they are so kind and they give showers or baths and make people feel really special. At least you would feel he was safe during the day

    You will also benefit from a carers assessment - it will give you a few hours of sitting service 'free' each week

    Both the above can be accessed by phoning social services adult care duty desk and telling them you are self referring

    He will also be eligible for a council tax refund - best get diagnosis first but ask council for the forms and you will need to get one of them signed off by the GP (Don't pay, some of them try to charge but they are not allowed to) Your dad comes under the category of severe mental impairment (sounds awful but does the job)

    If you haven't got it I suggest you apply for power of attorney - both health and welfare and financial. You can do it online and it costs a fraction of the cost that solicitors charge and it will save you a HUGE amount of grief with all the powers that be - social workers, banks, everyone, later on, do it now whilst he has capacity.

    Attendance allowance - non means tested, get the day rate minimum now and then you can just upgrade to the higher rate when you need to. Just google and print off the forms but get some help filling them in - they are tricky because it is about the help he needs not the help he actually gets. Phone AGe UK and ask if someone can help you check and help you fill in the forms - they are open a lot and its a freephone number 0800 169 2081. They will help you with loads of other stuff too

    Your local carers organisation carers cafe will be a Godsend as time goes on - have a search you will get lots of local info from just popping along and so much face to face support as well

    This leaflet on compassionate communication is very useful - I found it very hard to master but I stuck it on my fridge to remind me every day and it really does work

    Do have a look at it

    Good luck, keep posting - its a tough journey but there's loads of support on here xx
  4. middlemiss

    middlemiss Registered User

    Apr 27, 2014
    Hi Appledoorn, sorry you are having a difficult time, just a quick observation - you said the chemist needs 2 weeks to set up the medication nomad? Ours did it in a day when we stressed the urgency of our situation with mum after the GP changed her dosage. Go see the pharmacist if you can and have a word, they may do it sooner for you.
    Best wishes and luck x
  5. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    #5 Pickles53, Jan 12, 2016
    Last edited: Jan 12, 2016
    I get so angry when these statistics are trotted out about differing death rates if a patient is admitted at a weekend. Never seem to consider that the only people admitted at a weekend are those who are emergency cases so by definition they are sicker than the planned weekday admitted folk.

    My daughter and son-in-law both work in NHS finance and are more aware than most of how expensive the treatments are that their little boy has needed so far. Sadly most of us haven't got a clue and don't value the service as we should. We all need to be wiser about when we use it so that it can be there for us when it really is needed. I bet a fair few of those people in A&E on that evening didn't really need to be there but I understand that once a person has turned up they can't be simply triaged and told to go to their own GP or a walk-in centre instead. That 's just wrong. Over Christmas NHS senior managers were issuing statements asking people not to go to A&E 'unless it really is an emergency' . The fact they need to say that shows how the service is being misused.

    None of this is by the way implying that you shouldn't have taken your dad to A&E, Appledoorn, and in a crisis with dementia patients it is often the only safe thing to do, but if we want the service to survive we'll all have to think more carefully about how we use it.
  6. Appledoorn

    Appledoorn Registered User

    Dec 26, 2015
    Thank you all for your kind words of support, encouragement and advice, especially regarding the pharmacist. I'll be having a word tomorrow!

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