What a difference a year makes...
- Katie Nicol
- Feb 4, 2022
- 7 min read
Reflecting on the last twelve months or so has made us realise just how very far adrift from 'normal' we were by the end of 2020. And it is with a grateful sense of deep relief that we find ourselves in a vastly better place as 2022 unfolds, having travelled an incredibly long road through 2021 to get here. What a difference a year or so makes...
So Where were we then?
Just over a year ago came the confirmation of Euan's Lewy Body dementia, a horrible shock, but, a bit like his original Parkinson's diagnosis, not a surprise, to me at least. The summer and autumn of 2020 had been an increasingly worrying time, with Euan more and more lost to the world, days on end thinking he was trapped in London Underground engineering works, frequently unable to find his way around our own home, convinced there was a cellar under the house and deeply puzzled by the frequent company of convincing and unsettling hallucinations, including duplicates of me - all of which left him exhausted, confused and suspicious. He found conversations difficult to have and to follow, he could no longer read or understand text, he got lost in car parks, he couldn't follow TV programmes and, maybe not surprisingly, he spent a huge amount of each day asleep - a blessed escape, I suspect.
A brown haze
Euan looks back now and says it was all a 'brown haze' of which he recalls very little. Thank goodness. It was a time of lockdowns and social isolation, so very few folk were aware of how things were for us, and when I raised my deepening concerns with the Parkinson's team - I was increasingly sure these were signs of dementia - unfortunately I was met with dismissive laughter and a cry of 'Sleeping during the day? Nothing to worry about! Take it if you can get it! ' I came away from that meeting feeling terribly alone and lost and very frightened for the health and wellbeing of my beloved man. As the days shortened and the nights grew darker my heart grew more and more heavy.
Fast track to dementia
Thankfully, we were also being cared for by the neuropsychology team, and, when Euan's latest cognitive test results came back showing significant decline, the phone rang, a long conversation followed and a day later we were told that Euan was being fast-tracked to the dementia team. Suddenly I felt we were being listened to. The consultation with the psychiatrist was pretty tough, but it was also the beginning of so many good things that I look back on it almost with fondness. We were assigned to a fantastic social worker and a great community psychiatric nurse and Euan was started on powerful medication. Assessments followed for both of us and support plans ensued - care and support for Euan, respite and support for me. And that was just the beginning. A year or so on and our lives have changed beyond measure.
So where are we now?
Euan has gradually built up his tolerance to the dementia drug Rivastigmine, and now that we have experimented with the timing of his doses we have found a golden sweet spot, a precious gift of daily normality that we are both marvelling at and hugely grateful for. It's the only dementia drug Euan can have due to his Parkinson's and we have been told it works for up to 18 months, which makes us even more appreciative of the days we are now enjoying.
Conversation is back on the agenda and Euan's sense of humour is back up to speed, with his mischievous twinkle much in evidence. Speech therapy sessions are ensuring he can make his voice heard, and he is practising voluble opening gambits such as, "You're due me a pound!" and, "Mine's a Curly Wurly!" You have been warned.
Euan has learned how to use the new Smart TV - and I suspect there's many an able-bodied friend full of envy at this particular bit of tecchy prowess. He can choose and watch a huge variety of programmes - and discuss them, too, which is just wonderful. Recent favourites include The Ponds, The Queen's Gambit and The Father.
He has finally cracked the problem of thousands mis-filed photos on his computer which has been dogging him for two years (we cracked open a bottle for this achievement) and Euan is thoroughly enjoying getting everything back into its proper place. Fabulous slide shows are once again a possibility.
Euan has managed to work out how to use his drone again, which is fantastic - and Sally has very kindly also trained as a pilot so she can help him fly. Just not too close to Prestwick.
We were able to go away several times last year without Euan getting knocked sideways; trips away the previous year saw him completely confused and disorientated, haunted by hallucinations and unable to gauge time of day or location, all very upsetting to witness - but we have none of that now and holidays are a joy, particularly when they involve friends, photography, food and the great outdoors.
We have acquired assorted new bits of kit and made some radical changes to the house to make sure Euan can live here for as long as possible (post all about 'Kit and Caboodle' coming shortly. Euan has coped brilliantly with the changes and learned how to use the new equipment to an impressive degree. If you're lucky, he might let you have a shot with his swanky ejector chair or even a blast from his body drier - who knew such a thing existed?
Our days feel blessedly busy and purposeful in quiet, simple ways, and the company of friends tops us both up wonderfully.
The precious gift of ordinary
And all of this may seem very ordinary to anyone else, but compared with where we were a year or so ago, all these things are a very precious gift that we do not ever take for granted. Most days we stop and notice and say thank you. It has been wonderfully uplifting for both of us thinking about writing this post and how much things have changed for the better.
I started this blog at a time of great loneliness and sadness, turning to the page for company and solace when things felt very bleak. The fact that these last few months have been so full of life and busy revolving around Euan's much improved state of being has meant far fewer posts, and I am not sad about that. I enjoy writing, and I enjoy sharing something of our story, but actually living our story is the most important thing - and if there is time to share, then share I will.
Enter Mary Poppins...
And now, the icing on the cake, we have our very own Mary Poppins! When we were assessed as being vulnerable by social services in January 2021, we were each deemed to be in need of support (and how). We had the option to take control of the budget ourselves (via the SDS/Self-Directed Support scheme) and appoint a personal assistant (PA) to help Euan and provide respite. Initially, I just couldn't face the admin, so we took a care package instead, but more recently, with advice from our good friend Linda, and encouragement from lovely friend Mel, we contacted the amazing Ayrshire Independent Living Network (AILN) who specialise in all things SDS. Over a period of months they helped me put everything in place so we could use our grant to employ a PA and in November 2021, PA Joanne (AKA Mary Poppins), came into our lives. What a game changer that has proved to be.
Each day fizzes with fun!
I need to write a whole separate post about Joanne and her work with Euan. She is seen here helping build Euan's new office cabinets, an example of how she willingly turns her hand to anything that will support Euan and make a difference to his wellbeing.
It is such an amazing thing to behold, the way the two of them connect and energise eachother so that each day fizzes with fun and activity and a sense of progress and purpose. Laughter and banter and serious conversation flow in equal measure, mixed in with comfortable settled silences and a growing sense of community and shared understanding.
It is an absolute joy to have Joanne on the team; she has changed our world, lifted us both up, helped us to see above the parapet and to know that life can be better and easier and lighter to bear. Joanne is resourceful and enterprising and full of integrity and common sense. She is hard working and organised and perceptive and quick and eager to learn and to trim her sails to our course. And we are managing to sail that course because she is on board.
Lifted and lighter
I cannot imagine life without Joanne now. As well as the fantastic job she does supporting Euan, she is a huge help to me. I have finally begun to get beyond the basics and touch on my 'To Do' list because I am no longer coping solo, the only one helping Euan to get dressed and meeting all his daily needs. I have been able to swim and to row thanks to Joanne; there are also plans afoot for me to have days out with girlfriends and, in due course, Joanne will provide overnight cover, too, so I can begin to catch up on much needed sleep - we just need a bit more kit and caboodle from the OT to be in place first.
AILN - our Fairy Godmother
If Joanne is our Mary Poppins, working with AILN is like having our very own Fairy Godmother overseeing the whole venture - the team is only a phone call or email away and always ready to help. Yes, officially, legally, we are Joanne's employers, but AILN does all the heavy lifting - recruitment, contracts, payroll, PR, all the backroom essentials that would otherwise fall to me. And that just doesn't bear thinking about! Without AILN we wouldn't have taken the daunting step of advertising for support and our life would be so much the poorer. And that just doesn't bear thinking about, either! I don't know who came up with the idea for such an organisation, but they deserve a gong, and I just wish there was a similar set-up in every area of the country, so that everyone who needed a PA could be supported to have one.
Heartfelt thanks
So, thank you, AILN, for making the whole PA experience possible - and for all the hard work you do behind the scenes. Thanks, too, to Karen at Alzheimer's Scotland Ayrshire who organised the review that meant we had the budget we needed to attract a PA.
And thank you, Joanne, for being such a brilliant member of Team Westhaven and bringing us back to ordinary with so much fizzing fun!
What a difference a year makes.
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