• Ray P @RayPro Norwich - updated 8mo

    An insight of the Parkinson's carer (but applies to all carers)

    The Hidden Caring Role (copied from my carers Facebook group)

    As many of you know we care for my people with Parkinson’s Disease and
    Dementia. On the face of things they function well and we are lucky we
    can still go out and do things and have what looks like a pretty ‘normal’
    life.
    What you probably don’t realise is that behind the scenes a whole lot
    goes on to make things happen but you don’t see these things and how
    they frustrate and tire us both out.

    We recently had Carers Week. I thought it was a good opportunity to
    highlight carers who on the surface appear to be coping brilliantly but
    underneath are trying to cope with so many hidden challenges. Maybe
    you have a friend or relative who is a carer and this may shed light on
    their lifestyle.

    I belong to a Facebook group for people who partner with someone with
    Parkinson’s (many of whom also have dementia) and I asked them for
    their hidden challenges.I had nearly 80 responses so it’s an emotive topic.
    You may be surprised at this list. There will be things in there that haven’t
    even crossed your mind. Not everyone deals with all this all of the time
    but it is an extensive ‘job description’!!!

    The hidden challenges of caring.

    • Constantly having to think and plan for two people
    • Arranging and being their advocate at every medical appointment
    –not just a GP or Neurologist but the affiliated appointments such
    as physio, mental health, podiatry, orthotics, dementia nurse,
    continence service etc etc.
    • Helping them deal with their anxiety (which is often heightened
    with Parkinson’s).
    • Trying not to show your own emotions as they can’t cope with you
    being upset
    • Ordering seemingly endless medication and managing it ensuring
    all medication is given correctly and in a timely way
    Watching their diet both for the swallowing/choking risk and also
    for the effect it has on their digestive system.
    • Dealing with constipation/diarrhoea including thinking and
    planning ahead if going out.
    • Making sure you have bought continence equipment such as pads,
    waterproof bedding etc – just in case.
    • Providing reassurance if they are disorientated or confused
    • Explaining things over and over again as memory deteriorates.
    • Helping to support them if they hallucinate – reassuring them that
    no-one is in the house and they are safe
    • Feeling ‘jealous’ that friends can just ‘go’ whereas we have to plan
    and organise to the n’th degree. Being impromptu or travelling light
    is not an option.
    • Helping them dress
    • Cutting their nails
    • Sorting out hearings aids – putting them in, cleaning them, changing
    the batteries, ordering new parts
    • Driving them to every appointment
    • Not being able to prioritise whatever you need to do as if they need
    us we have to drop everything
    • Getting up in the night with them to help with toiletting or to
    change beds when accidents occur
    • Endless washing
    • Being careful what information you give them as too much notice of
    appointments or events can cause unnecessary anxiety
    • Helping them do exercises provided by physio
    • Motivate them to get active rather than just snoozing in front of the
    tv
    • Help find ‘meaningful’ tasks so they feel they are being helpful and
    have a fulfilled day when they can no longer do things they used to
    do
    • Helping them with tasks so they feel they’ve achieved something
    even at the expense of you getting your tasks done.
    • Carrying bags whilst out and ensuring they can walk or use a
    wheelchair safely
    • Manhandling the wheelchair if they use one
    • Asking for help for them eg when travelling
    • Planning every trip out route planning, driving, finding parking,
    checking ahead for disabled spaces etc
    • Dealing with all paperwork including insurance, banking,
    appointments…
    • Organising and dealing with property maintenance locating and
    booking tradesmen, dealing with them and paying them.
    • Chasing up appointments if they can’t manage the phone or email
    • Dealing with ‘the system’ as not every professional acts in a timely
    or correct way.
    • Dreading the post arriving/phone going for yet more appointments
    or things to sort out.
    • Constantly feeling overwhelmed by the responsibility
    • Wanting to go out and do ‘nice’ things and make memories but not
    being able to face the gargantuan amount of effort it takes to
    organise days out/holidays and the tiredness when you get back.
    • Constantly watching for new symptoms to ensure nothing gets
    missed – not assuming all issues are due to Parkinson’s
    • Helping to moisturise skin, legs and feet especially checking for
    sores or damage
    • Ensuring they wear a hat and sun cream and drink plenty in the
    heat
    • Making sure they have hat, scarf and gloves when it’s cold.
    • Constantly keeping an eye on them to check they are safe. Not
    leaving them on their own and needing to organise someone to be
    with them so you can go out alone.
    • Help with washing, shaving and personal care.
    • Organising their clothes as they can’t always chose appropriate
    items for the weather/activity
    • Finding things they’ve lost time and time again.
    • Feeling upset when you witness someone of a similar age achieve
    basic tasks like buying shopping or putting fuel in the car knowing
    your loved one will never do that again.
    • Buying your own Birthday and Christmas presents as they cannot
    shop alone or order online
    • Having to take over the tasks they thought of as theirs – car
    maintenance, gardening, cooking and washing for example
    Feeling lonely even when they are sat next to you as their
    comprehension and conversation diminishes.
    • Making decisions as they can’t do it for themselves.
    • Wording questions in a meaningful way because an open question
    such as ‘what do you want for dinner?’ will not elicit a suitable
    answer
    • Answering the same questions time and time again
    • Trying to keep up with what they are asking as their train of thought
    jumps around
    • Filling in missing words when they can’t articulate well
    • Trying to calm their frustration when they can’t make themselves
    understood
    • Dealing with fluctuations in movement as medication wears off.
    Freezing or becoming ‘stuck’ can be common
    • Trying to keep to a routine that makes them feel comfortable and
    secure.
    • Sundowning- when they deteriorate late in the day – thinking they
    are in the wrong house or wrong bedroom. Dealing with aggression
    or distress that goes with this.
    • Grieving for the person they used to be that you’ve lost
    • Losing yourself and feeling that your relationship with them has
    changed.
    • Not being able to relax and enjoy things as you’re permanently ‘on
    call’
    • Trying to keep them safe and double checking everything such as if
    they use the kitchen. Making sure they haven’t unplugged the
    freezer or fridge
    • Finding kitchen items in strange places. I’ve given up counting how
    often I’ve rearranged the cutlery drawer to put things where I can
    find them!
    • Taking over all the household chores as they fail to remember how
    to work the washing machine, microwave or dishwasher
    • Having them follow you around so you can’t get on with things that
    need your concentration.
    • Having little if any time to do the things you used to enjoy
    • Friends ‘dropping’ you as they can’t deal with the deterioration and
    you can’t join in like you used to. The loneliness that goes with it.
    • Constantly repeating things
    • Trying hard not to snap when you’re tired and frustrated. Speaking
    to them with your ‘Disney Princess’ voice and not your Cruella De
    Ville voice!
    • Liaising with and booking care providers if used. Dealing with
    invoices or employment law if employed directly
    • Trying to make out to friends and family that you’re fine (even when
    you’re not)

    If you’ve got to the end of this list well done! Not everyone experiences
    all of these all the time but the consensus was they are all part of the role.

    One person summed it up as this:-
    “ Having to control their life as they can't make their own decisions but
    having no control over your own life. “

    This discussion is now closed.

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