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I hope to add some more first hand experience here from those who have some tips and advice about anything that might be helpful to know.

Please EMAIL your tips to add:

hello@youngerdementianottingham.co.uk

email now Younger Dementia Nottingham


BENEFITS (may have changed recently) & PRACTICALITIES:

Things you may wish to do, or enquire about with your local council/benefits office/social worker/Alzheimer's Society:

  • Lasting Power of Attorney, LPA (previously was Enduring Power of Attorney, EPA) This allows you to help take care of paperwork on behalf of the sufferer when they are no longer able to do so, which can happen sooner than you might think.

  • Benefits including (NB due to so many changes in the last year or so this could be out of date, but I've left here as a starting point in case helpful):

    - Incapacity Benefit (now ESA?)
    - Personal Independence Payments? (prev Disability Living Allowance or Attendance Allowance)
    - Blue Badge (if mobility or safety is an issue)
    - Council tax reduction
    (often a tricky one to find out about - but it DOES exist - email me for more info if your council acts daft/denies knowledge of/sends the wrong form, as there is another similar reduction for other circs)
    - Bus pass (free travel - I hope this still exists, but may need checking)
    - Joint bus pass (I had a joint pass if you need to be a companion as carer & travel free with them, but again, this may have been taken away in recent changes)
    - Carers Allowance (maybe this has changed now)

  • Apply for pensions early possibly (private pensions, not state pension)
    Helpful if you want to improve your income and enjoy life while you have the opportunity together

  • Make a will (both of you)
    Not necessarily easy, I know, but I would say is fairly crucial

  • I would suggest the Alzheimer's Society in Nottingham as a good place to get most advice from. They can also help you with the maze of paperwork if you are struggling.

  • I also suggest doing as much paperwork as you can earlier on whilst you have more capability of doing so, and to save stress later on.


CARING ADVICE

This could be a tricky area but I want people to feel free to add hints about what they have experienced as being helpful to them whilst recognising such things may not be appropriate for all people. Please email me with your hints to add here.

  • having a regular routine may help you both try and think 'outside the box' eg my hubby had headaches for months before we realised he had toothache

  • put keys on a clip keyring that fixes onto a belt eg (it's metal circle shape that has a pull-out chain with the keys on the end and stays on whilst in use - I got mine in a hardware shop)

  • use a wallet that can clip onto a belt loop so always remains attached whilst in use

  • buy a one-cup kettle eg 'Tefal Express Boil' for retaining independence in making hot drinks (it dispenses one cup of boiling water instantly so prevents forgetting that the kettle has been switched on and walking away, costs 40-60 but may be worth it in bills saved over time!)

  • write or print a business card for within their wallet with your contact details and anything else you want others to know to help if a problem occurs... ... or even better for those who live in the County, (sorry City dwellers you don't qualify - it's a nonsense I know), register with the County Carers Unit Emergency Card for Carers scheme where they record your details and contacts in case of emergency (ie if something happens to you as carer), and you carry a card so people can ring a number and your chosen people are notified of the situation so emergency care can be put into place. Tel 0300 5008080

  • programme your contact number into their mobile on all shortcut keys (ie most phones I've seen allow you to programme numbers into numbers 1-9 so that if it is held down it automatically dials the programmed number and put your one number in all the digits so it will only ring you if they are unable to use the 'phonebook' or dial digits etc and just need to remember to hold down any number - you could use a coloured sticker dot to identify a number if number recognition is a problem, or tippex a dot on the key and keep topped up if rubbed off)

  • get a large digital clock to replace the traditional clock face in your lounge if digital is easier (it often is)

  • get used to simple pleasures and if anything becomes too stressful to do anymore, give it up - not defeatist, but realistic in these new circs we are in

  • small household chores stimulate the mind even if not done to your satisfaction (ask yourself 'does it matter', and if it does, do it again yourself later discreetly)

  • use a white board to write what is happening on each day and leave somewhere prominent eg kitchen (there are ones available with the days of the week on too)

  • if going into respite care, label all clothes and items including glasses (write name very small on a label, cut and stick inside the widest part of the arm near the lens, and help ensure stick by also coating with clear nail varnish), even false teeth can have a name put on them when they are made

  • for more tips about care homes, go to the Care Homes page