What a difference yet another year makes...

I haven't added a post for over a year. Not because there was nothing to say, not because nothing of note was happening, but simply because there just wasn't the time or the strength to put any of it into words.

Time and Tide and Tidal Waves

I did start to draft the 'Kit & Caboodle' post in the springtime of 2022 (coming soon!), but time and tide overtook me and life became about nothing more than keeping our heads above water, with nothing left to spare, a veritable case of "not waving but drowning"as both Euan's illnesses moved on apace. The changes and challenges came thick and fast, but with dogged determination (and help from Joanne and Sally), I tried to stay one step ahead, not wanting to let the dastardly duo of Mr P and Mr D get the better of us. I kept thinking, 'Just a bit more kit and caboodle, just a bit more true grit and determination, and we will be ok.' But in the end we weren't ok and in September 2022, sleep-deprived, exhausted and physically depleted, I finally had to admit defeat and acknowledge that Euan needed to be cared for away from home.

This is without doubt hardest thing I have ever had to live through.

Nine months on from that traumatic time, in the long, light days of midsummer 2023, the tidal wave has passed. Euan is settled and content in wonderful Creggan Bahn Court, wrapped round with five star care and support. The rhythm of our days has finally become simple and gentle, there is fun and laughter again and I find I have come, for now, into some quieter waters and at last have time to reflect.

Last March, before everything completely accelerated away from us, I wrote a poem, about how things seemed right then. I called it 'Out of Time' because even then, that was how it felt - we had, quite simply, run out of time for all the things that anyone might hope for in their later years. Ironically, Euan had been unable to tell the time for quite some time, too, existing in a world out of time - sad for a man who made a living from revolutionary software that he designed to help the NHS manage appointment times and knew to the minute every mile of a journey or routine of his day. Euan loved the poem as soon as I read it to him, and asked me to share it via the blog with his blessing; it is with apologies to Euan that it is only now seeing the light of day.

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Out of time

Reflecting on what it means to have Parkinson’s and dementia in our lives…

We’re out of time for work and play

No time for us to end our days

In relaxation and repose the way it goes for those

Who breathe the freedom that retirement brings

We’re out of time and out of tide

To swim and row

And feel the flow - no time to go!

No time to know

The freedom

That those time and tidal pleasures bring

Out of time for fun and frolics

Out of time for mountain climbs

Out of time for making portraits

Out of time for making time

We’re out of time for thought and mind

Out of time for choice and choosing

Disease, dis-ease, our way of losing

Losing time and choice and freedom

We do our best

We do not dwell

Upon this time and tidal swell

And yet -

We’re out of time and out of step

Out of choice and out of freedom

No rhyme no reason to explain our loss

Nor why we’re trapped

In this cold season

…We’re out of time…

…We’ll lose the race…

…We’re out of time…

Please, slow the pace!

But time and tide they will not wait

We’re out of both

We’re just too late

No rhyme no reason to explain our fate

We’re simply

Sadly

Oh so madly

Truly madly deeply badly

Simply

Oh so very sadly

Simply

Sadly

Out of time

March 2022

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Worlds apart

And so we are indeed out of time. Euan is pretty much in his own world these days, with only a very tenuous connection to the reality that the rest of us inhabit and understand. He is mostly at peace, although periodically (and regularly over night) he becomes agitated and suspicious and difficult to deal with (as I knew only too well when I was caring for him myself at home). These tricky times aside, Euan loves the company of family and friends, people who can connect him to the comfort of the familiar (but often slippery, slip-away) past. True, the past doesn't play quite so many tricks on his brain as the increasingly confusing and intrusive unrealities of the present - but the past doesn't quite stay put without help. That help comes in the form of those who want to hear Euan's stories; those who have precious shared memories to rekindle; those who want to learn afresh, maybe from photos or treasured objects, all about Euan's life and times; people who can support Euan to be his best self, who know and love the funny, bright, cheeky man within and are happy to help draw that essence of Euan to the surface. All these interventions create a vital bridge between the worlds, a bridge whose span is becoming ever wider, anchored on shores that are less and less secure.

During this time of upheaval and change, I have parted company with someone who told me I was always making a mountain out of a molehill with Euan's health, apparently always 'going on about it' when 'others had it far worse', and apparently I only had time for other people on 'high days and holidays.' At the time of these accusations, as well as dealing with all that was going on with Euan, I was supporting friends who were grieving and struggling in various ways, and they in turn were supporting me. I certainly wasn't 'shutting myself away' from the needs of others, and I certainly wasn't adopting the 'poor me' tone that I was being accused of. I would hope that these blog posts are testament to quite the opposite, my upbeat determination always to 'keep on keeping on' (our mantra) and to triumph as best we can over adversity. It was clear from the accusations that my accuser and I were worlds apart, so I felt I needed to walk away in every sense. And I have to say, my world has felt much lighter since I decided to cut loose. I've never done such a thing before, but I know it was absolutely right in order to preserve the integrity of the loving, caring, positive world we try to wrap around Euan - and it was the right thing for my own wellbeing, too.

The importance of the tribe

It's interesting to see who's stayed close and who's drifted away and who has come closer than we might ever have imagined over this last year or so. It's back to the concept of the tribe - more than ever now, we need our world to be populated by those who 'get it.' Our focus has to be about Euan and making sure that the shady, shifting, shape-changing world that he so bravely inhabits is the best that it can be.

"We do our best, we do not dwell..."

Onwards and upwards, I say, and a huge thank you to all who tread that road alongside us, helping us to do our best each step of the way. We couldn't do it without you.