• Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 5mo
    Here is my impression of our first disabled holiday with the "Limitless Travel" company We travelled to South Mimms services the night before to meet the coach at 9 am, we stayed at the Premier Inn that unfortunately told us just 2 days before that the restruant was closed and the prebooked meals would be refunded later. Limitless Travel gave me a number for the courier to assist with luggage to the coach that took us to Chester via a 45 min stop in Birmingham Hiccup no.1 the telephone number was an old one and was turned off, so waiting outside the hotel a lady came out and asked what we were waiting for? - it turned out it was the courier we were supposed to phone, she had changed her phone, told company but still given her old number! We arrived at the 4 star Hilton hotel in Chester about 3 pm where we met the other members of our party by the three couriers/carers. We then went to our separate rooms to refresh before dinner at 7.pm. Our room was a suite with a king sized bed with its own bathroom, there was a large screen 55" tv that swivelled in a wide divider separating the other room that had a hospital bed and a wheeled commode/shower chair plus a fully disabled wet room. There was also a proper coffee pod machine along with the usual kettle etc. A settee, glass coffee table, armchair, desk and chair, fridge and safe. All in all a very nice room that catered for our needs. The coach driver was a real character at our first dinner that had everyone roaring with laughter within the first 15 minutes. We had a set menu to choose from that changed daily, it had a choice of 4 starters, 5 main courses and 4 desserts, followed by tea or coffee. We were seated on a long joined up table that had the whole party on it, chairs were removed to cater for wheelchairs. The food was first class. The trips out to Llandudno, Liverpool and Llanberis were well organised and catered for all disabilities, we had the same coach and driver from beginning to end. Weather wasn't great at Liverpool but we all enjoyed our river cruise around the docks, at Llandudno we had a high tea in a hotel overlooking the bay in warm sunshine, as was our trip to Llanberis where we all got on a train with a reserved carriage for wheelchairs for a trip along the lake, stunning scenery there. To be honest I thought the cost was too much but afterwards on reflection, the quality and detail provided was faultless and we could well be going with them again. (After saving up of course!) Cost was Adult Holiday Package (Ray Proctor) £1,199.00 Adult Holiday Package (Jackie Proctor) £1,199.00 Profiling Bed (Jackie Proctor) £479.00 Shower Commode (Jackie Proctor) £161.00 Discount - £100.00 Total. £2,938.00 (To put in perspective, the 4 days in the hotel suite we had would of cost me £760, plus half board meal at approx £600)
  • Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 6mo
    This is what our bathroom looks like after having the bath removed and a wheel in shower fitted, plus some new units, this was all fitted within 4 days and was tax free. We have a holiday planned with a specialist disabled holiday company, special coach to Chester then trips out to Llandudno, train trip to the national park then a day in Liverpool the 5th day is travelling back. The hotel is supplying a hospital bed and wheeled shower/commode chair. Everything is wheelchair friendly, not cheap as you can imagine but our last holiday was 2019 and we certainly need this break. The powered wheelchair is now sitting in the garage and I'm going to sell it as Jackie just cannot control it safely, I've bought a sturdier used wheelchair that she seems to like.
  • Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 9mo
    We are now moving into a different stage of wife's Parkinson's, her legs have now contracted in a bent condition so that she cannot support herself so the Zimmer frame and the standing hoists have been returned along with the tall toilet seat. I have purchased a wheeled shower chair that doubles as a toilet seat and this is her means of moving around inside the house. Our bedroom now resembles a factory with an overhead crane, I've had to move into another room to sleep. Her dementia is getting worse plus she's more demanding and comes out with the strangest things sometimes, surprisingly she remains in good spirits. I've bought her a powered wheelchair after pushing her around Pensthorpe (a nature reserve with lots of birds) which tired me out with the gravel paths. She cannot drive or ride a bike, so the first outing in my driveway she went into the wall 4 time, the flower beds umpteen times and into me twice. The proplem is panicking and not letting go of the joystick that automatically applies the brakes. After I'd arranged insurance for her chair we attempted going up the road, not very successfully but at least the road was not encroached on. Slowly and infrequently trying to get her to use it and then we can start to use the 2mph setting instead of 1mph one. Cooking is going well, I rarely look at a cook book now, I've purchased a built in induction hob to replace the portable one and I'm very pleased with it. The subject of a small lapdog came up and we hovered right up until we were going to the rescue centre when wifey panicked and said no, so I did the next best thing and bought an expensive fully automatic bean to cup coffee machine instead, wasn't a bad buy either as wifey a devoted tea drinker now likes a cappuccino a couple of times a day. We now use an extra 2 litres of milk a week. Our wheel in shower is starting to be fitted on Monday after removing the bath, there also going to fit slimline cabinets with wash basin and toilet, this will make life easier.
  • Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 9mo
    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. “
  • Posted in: Carers and Caring

    Ray P @RayPro Norwich - updated 11mo
    Just thought I'd bring you all up to date on our situation, Jackie is just about capable of moving now as shown in clip, although she tires in the evening and I wheel her around for abloutions and bed. We've just got a quote to remove the bath and fit a wheel in shower, I supply the tiles where the bath was and was happy to see it was only £3.1k from a local disability specialist building company. Her dementia is holding its own by her medication thankfully, our local Parkinson's group is running a voice course for 8 weeks and Jackie is signed up for it as she is very quietly spoken as she speaks into her chest, thankfully she's still aware and in good spirits. I belong to a Parkinson's Facebook group for supporting carers, compared to other carers I've got it easy but some are at the end of their tether, one today ended up with the Samaritans others make you laugh or cry, it's a good outlet for frustration and anger. You may remember I've had dogs for most of my life, when our last one passed 4 years ago Jackie didn't want another one because as we know now her instability was beginning to appear. Now it is not so much, or soon to be not an issue so I broached the idea of a rescue companion dog i.e. cavalier or bischon frisé sort as company for her when I'm out. After some yes, yes, maybe, no I've decided to get myself a nice one button fully automatic coffee machine instead 😜 Quite the accomplished cook now, I make old fashioned bread pudding that seems to go down well with all our family and even had to make one for Jackie's knit and natter group, all done in the ninja.

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