What I wish you all knew…

This is the chant that has taken root in our home, and that I endure for extended periods of time throughout the day and night. It sounds harmless, and it would be if it didn’t go on and on and on and on and on and on and on, and on – and on – for excruciating lengths of time, often combined with fear, terror, whining, clingyness, neediness, attention seeking and crying wolf.

Think broken record. Think wind-up toy on steroids, and you’ve met my dear mum.

Even writing about that constancy creates tension and constriction in my gut. Not to mention the caution and guilt of going public about our journey, where judgements can be rife and public perceptions quite wounding.

And I do feel, at a very deep level – at a soul level – that I have Mum’s backing for this. We’ve become a bit of a team in here, working this whole thing out together, aiding deep emotional healing for each other in ways I don’t think I will ever truly understand never mind be able to articulate. But I can feel it, and I ‘inner know’ it.

My name is Lesley. My wee 83-year-old mum has what was diagnosed as ‘unspecified’ dementia and I have been looking after her 24/7 since 19 February 2024.

And it is mother and daughter doing their best with what they’ve got, not always pretty – often far from it – and whatever it looks like from the outside and feels like from the inside, is always rooted in love.

I’ve been living with Mum since July 2022 when she was really starting to show some significant signs of cognitive decline. It was like walking a tightrope for a very long time (still is, just the balancing act is a bit different), finding the most appropriate way to communicate with her without upsetting her.

For a while she was an accident waiting to happen, as her brain was no longer doing logic or reason and her movement was becoming chaotic. And on Christmas Day 2023 the accident happened.

After a partial hip replacement and eight unnecessary weeks in hospital (another story), Mum returned home on Monday 19 February 2024 at 2pm. We didn’t think she would still be alive come July, she had declined so much in the hospital environment.

However, not without an immense amount of trauma, stress, sleepless nights, confusion, exhaustion, resentment, anger, rage, frustration, fear, terror, sadness, guilt, tears, occasional side-splitting laughter, renewed appreciation of each other, and a visit to A&E less than 48 hours after she’d returned home after she’d fallen and cracked her skull, she thrived, and instead, although small, frail and really very scary on her legs at times, she has become remarkably healthy.

She is very physically well, eats everything you put in front of her, drinks everything you offer her, and rattles and bangs around the house with her zimmer like it’s a ragdoll.

Her agility is remarkable, her balance is mostly good, and she is fast as a ninja – but her brain doesn’t speak much to her legs or her feet so she forgets to use them. Hence, her mobility is quite hair-raising, her landings are usually light except when her head rattles against the wall or a piece of furniture and I live with matchsticks keeping my eyes open, my heart in my mouth, and a good friend of the couch where I collapse as often as the opportunity arises.

Thank you for reading. I hope to chat again soon.