Kit and caboodle - Part 1: All the fun of the fair!
- Katie Nicol
- Mar 25, 2024
- 8 min read
Updated: Mar 26, 2024
Life with Parkinson's dementia has its ups and downs, physically as well as emotionally, and at ten or eleven years post diagnosis, we realised that the time had come to invest in equipment that would ease some of the daily physical struggles for us both. Thanks to some clever new kit and caboodle, our life indeed became easier: we quite literally had ups and downs thanks to a new bed and chair, and we added some wash and blow dry options, too, as well as whistles, bells and wheels - and I can report that Euan thoroughly enjoyed all the play value. We don’t call him Mr Tech-Nicol for nothing!
It started with a stick...
Walking was becoming more and more difficult for Euan, so he decided a stick might help - and we found a nifty little folding number that would also form into a seat so Euan could take a break along the way. A visit from our lovely community physio, Marie, led to the introduction of the red chariot, which meant Euan could walk further and with more confidence, supported to keep a more upright posture and with the added benefit of a very comfy seat for enjoying the view - and room for storing snacks, too! The beloved beach was a bit tricky for small wheels, though, so enter Eric, the Swedish all-terrain walker and a new era opened up for us. Eric gobbled up the sand and gave Euan a real spring in his step. And sometimes, to allow him to go further afield, Euan would hop onto 'Cartie' for a trip into town (usually with ice cream in mind!). Eventually our OT suggested Euan needed an indoor walker, too (made by Days, instantly dubbed Doris - for those of a certain age this might make you chuckle). But poor Doris was often to be found abandoned in the the far reaches of the house, and so was never handy when Euan needed her - although when he moved to Creggan Bahn they just assumed she was part of Euan's everyday living and so, belatedly, Euan and Doris have bonded and she is now very much stage centre.
Wonderful wheels
Stick with it, Euan!
A bit of a sticky situation
It's strange to think that in 2021 our house was a very different place, and we had no idea that so many changes were going to come along in such quick succession. The conversion of the garage to create a utility room was well behind us. We had just finished transforming the grotty old decking into a much safer patio, complete with ramp, and the best of the decking had been recycled into waist high planters to make gardening easier. We were feeling pretty smug and looking forward to a quiet time ahead, just enjoying our lovely home without any further expense or disruption...
But the problem was that Euan just kept getting stuck - in chairs, in bed, on the loo - and I was increasingly required to do the heavy lifting to unstick him - toilet frames and bed sticks just weren't enough to get Euan up and doing. And I certainly couldn't risk going to bed before Euan, as he would have been sofa-bound all night, unable to get himself up without assistance. And once in bed he couldn't get out again without help because his Parkinson's means he has lost his 'wriggle function'. You don't even realise you have a wriggle function until it's not there any more - and boy, what a difference it makes! Please don't ever take your ability to wriggle for granted.
Time to take action. Time for some tech - just the ticket for for Mr Tech-Nicol!
Ups and downs with 'Big Blue'
We bid a warm welcome to 'Big Blue' the riser recliner - otherwise known as Euan's ejector chair. Euan couldn't wait to try out his 'electric chair' on the day it was installed, and it was worth every penny for all the independence and comfort it provided. To my knowledge, no one has ever been invited to have a shot in Big Blue, and I guess Euan would charge you for it if you asked, although payment in Curlywurly bars would always be acceptable.
Enter the Mexican Wave Machine
Parkinson's makes moving in bed really hard. And as a carer, when you have to wake up night after night to help someone several times to turn over or sit up, you no longer take ease of nighttime manoeuvres for granted. Even with a bed stick in place, Euan's nightly struggles to sit up and get out of bed for the frequent trots to the loo meant the time had come to do something about the hefty unforgiving king size sleigh bed. We had tried various simpler (and cheaper) pillow and mattress raisers, with the help of our lovely OT, but none of them worked, so we finally bit the bullet and ordered a profiling bed that would help Euan to sit up. It gave us each our own controls and mattress preferences - Euan's needing to be very firm and with a specially rigid edge to help him getting in and out. And the movement sensor lighting was an inspired feature of the design. Personally, I was looking forward to propping myself up with a good book, but much more than that I was thrilled that my man would have to struggle a little less to get up for those regular nighttime visits. Plus, the whole outfit provided lots of scope for perfecting a Mexican wave technique - and the remote control had the potential for a little bit of mischief-making, too!
The mighty Whirl-itzer!
In the end the Mexican wave bed just wasn't enough, and, after a brief stint with a hospital bed on loan from the local authority, we decided to invest in a super technical piece of kit, a Rotaflex bed - dubbed the Whirl-itzer! This is a bed that will take you from lying flat to standing by cleverly cradling you, raising and rotating you, then forming the mattress into a seat that brings your feet down to the floor and finally rises to support you as you come to stand. Then you do it all in reverse and find yourself back in bed - basically a sort of bed time hokey-cokey that always reminded me of the amazing old Wurlitzer theatre organs that rose up from the depths, except this one went round and round as well as up and down. All that was missing was the rousing music!
Euan couldn't manage the controls, so my sleep was still disrupted, but it made a huge difference to nighttime manoeuvres - I was no longer having to heft and heave and Euan was safely and smoothly brought to standing each time he needed to be up. It was quite simply life changing for us both. I had my own profiling partner bed alongside, which was altogether nicer than Euan sleeping separately in a hospital bed - we could still coorie in together for a snuggle.
The wash & blow dry facilities
The combination of Euan losing his wriggle function and being much more prone to falling meant that the en suite in the master bedroom was no longer safe. On a couple of occasions Euan slipped down between the loo and the radiator and wedged himself (stark naked, of course) in a space that made it very tricky to rescue him. The OT advised the urgent creation of a wet room in the downstairs family bathroom, which also mean a change of bedroom for us so that we could sleep next door. Yet another building project, and yet more of our savings deployed. We could have had a wet room provided by social services, but at the time there was an 18 month waiting list, and we simply couldn't wait that long.
A Closomat 'wash and blow dry' loo made life a lot easier for Euan, helping him to maintain his independence - and his dignity. The full length body drier allowed Euan to dry himself independently, too - that pesky wriggle function again - you try towel-drying yourself without it! The suite was completed by an adjustable sink, light and mirror - the whole combination could be raised or lowered, ahead of the day that Euan might be in a wheelchair. A nice bit of future-proofing, so we thought - if only we had also been given a crystal ball...but we got good year out of it all.
"Going backwards is not an option and standing still is not enough..."
People sometimes marvel at how hard I push to make things happen, to make things better, to make life easier for Euan. There's an inspiring TED Talk called 'Three things to ask yourself about everything you do' by Stacey Abrams, a US politician. All the quotes in this section come from that talk.
"Decide what you want to do. Ask yourself why you want to do it. Work out how you are going to achieve it."
My what is to fight to make a difference for Euan, to preserve his independence, his dignity, his quality of life - and acquiring whatever kit and caboodle we could lay hands on was part of that. Also engaging with the professionals who make such a difference: while Euan was at home, that included our amazing social worker, Lisa; our fabulous OT Joanne; and our wonderful community physio, Marie.
"Jumping from the what to the how is meaningless if you don't know why because when it gets hard, when it gets tough, if you don't know why you can't try again."
My why is to ensure that Euan's days are the best days possible. Stacey Abrams says that your why is not about something you should do, but about something you must do - and I do feel driven to make the best of things for Euan. I want him to live to the full and have the best quality of life we can achieve - and that doesn't just mean throwing money at the situation, it means finding ways to enjoy being alive and have quality time together so we will have no regrets.
I am passionate about the why of all of this, that's what keeps me going, that's the bit that makes people marvel, and I have to say it feels as though it's written through me like a stick of Blackpool rock. There's no 'should' about it for me: it's something vital, essential, non-negotiable. This is my husband, and he's been dealt a rubbish hand, and his days are numbered. I want each one to be the best that it can be. That's what keeps me going, that's my why.
"I'm going to move forward because going backward is not an option and standing still is not enough."
So a big part of the how of this, for me, is to find the right kit and caboodle for my boy, things that will free him up and enable him, boost his confidence and allow him to get through his days with greater ease and comfort and fun, too. It's not always about throwing money at the situation - the £35 walker from the charity shop was a huge success and has given hours of joy. The beds and the chair, the all-terrain walker and the wet room have cost a lot more, but we would rather spend the money now than have it in the bank for a rainy day that Euan might not be here to know about.
"Three things hold us hostage: finances; fear; and fatigue - but that's why God invented naps, it's an opportunity to evaluate how much you want something - and that's when you go back to the 'why' of it."
I can't stand by and just watch or weep and wail. I am driven to make a difference. I keep on keeping on. And yes, I worry about money, I am sometimes overcome by fears, I am often exhausted, but I look for silver linings and practise gratitude every day. I take another nap. And then? It's back to my 'why'.
And so I end by wondering, what is your 'why'? And how do you get from your 'what' to your 'how'? And how do you look after yourself along the way?
A Kit & Caboodle Footnote
In the two years or more since I started this particular blog entry, the kit and caboodle has continued to change as Euan's needs have advanced and his illnesses have marched on, but the 'why' of it all has never left me. Now, as well as getting him a 'tilt-in-space' high tech powered wheel chair, a tilting shower chair and a specialist room chair that would look quite at home in business class on a plane, we have added the amazing Cycling Without Age Scotland trishaw to Euan's collection of toys! More on this in another post, but you can see from this photo that the trishaw scheme gets Euan's full approval!
You have a gift Katie. A gift to share via your words aspects of caring that many carers can relate to. It lets others know “ you aren’t alone” keep blogging. You reach others in more ways than you can imagine ❤️❤️