Say hello to my (not so little) little friend


The stroke admission ward was full to bursting last night. Two of the healthier guys on Dad's ward were shipped out to other parts of the hospital, with two new guys due to arrive any moment.

Their personal belongings arrived thirty minutes before they did. Although one guy had fought tooth and nail to keep his with him. He failed. Two large bags arrived and were placed on top of the bed directly opposite Dad.

The nurses started to unpack the bags, but rapidly stopped.

The first bag contained a meaty crystal dildo, something wrapped in a blanket and a huge (and I mean monster) flesh dildo.

One nurse began a rapid chant of "Oh, my gosh! Oh, my gosh!", in her thickest African accent. The other nurse stood with her mouth open and seemed to stop breathing for a few seconds.

They threw everything back into the bag and threw that into the bedside locker. Just in time.

The smallest, frailest sparrow of a man was then wheeled in (yes, in a wheelchair) and helped into bed. He looked like a strong gust of wind would break him.

So, we all sat in dead silence. Then my Dad signalled that he wanted to spell a board.

D I L...

My dad is a cunt.

Sixty Five


Dad turned sixty five today. His birthday was odd. A nice man called Dennis, who has dementia, came to visit Dad this afternoon. He gifted Dad with a photograph of his dead wife. He'd wrapped the photograph in a clinical remains bag.

Awkward stuff.


Dad has another chest infection. Weaning is also on hold whilst the ENT team decide if a Laryngoscopy will shed some light on why he's finding it so hard to get his voice.

My migraines are coming thick and fast and are leaving me exhausted. I need to sleep for a month.

Cherry Mistmas!

Last night, after massaging Dad's left hand for over an hour, I asked him to squeeze my fingers. His index and middle finger gave the tiniest of lurches. I asked him to imagine crushing my hand. Once again, his index finger made the faintest twitch.

I have to wait until the canula is out of his right hand, but I fully intend to fix that one too.

Draw a picture of Grandad.

Robert Brudenell, as drawn by Immi Brudenell

Immi (3½): "Do you remember when Grandad was alive and he used to lift me over his head?"


Dad has had another knockback, in the form of a chest infection. He took about a week to shift it, but was then hit by another 'mystery' infection. He was started on intravenous antibiotics first thing this morning, and he's already back on the mend.

Nottinghamshire Social Services have been pestering us to move Dad into a neurorehabilitation unit. They claimed that he'll be fully funded, but then added a sly 'for now' under their breath. It's another external pressure that I could certainly do without. Especially when the Critical Care team are telling us that Dad won't be going anywhere for a good long while.

I also need to broach the whole NHS Continuing Care option, which has been happily glossed over. It feels as though they want to bully us into signing Dad up for a private care home, and then dump us with the bill after a few months.

A Breath of Fresh Air.

The Critical Care Outreach Team have decided that it's time to wean Dad from the ventilator. Today they swapped out his standard tracheostomy with a fenestrated one. The cuff was then deflated, and the end cap was screwed into place. Then, Dad spoke; sort of.

Imagine what it might sound like if a very sleepy dog could talk. If you can hear that in your head, then you've got a pretty good idea what Dad sounded like. It may have been weak, but hearing him rasp out 'Hello, Russell' for the first time in 66 days was still pretty amazing.

When he told Mum 'I love you', there wasn't a dry eye in the house.

He's still only able to manage for a few minutes at a time, but he's very ready and eager to get his voice back.


Whenever I feel a twitch or a twinge from my dad's body as I massage him, manipulate his limbs or stretch his joints, I don't mention it. But I do keep a mental log of it.

If I feel the same movement again, that's when I point it out.

For the past week I've noticed that the toes of his right foot have felt distinctly cooler than those of his left. Accordingly, I've spent about an hour each day working those toes, massaging them, pulling them apart and tracing the tendons from toe to ankle.

Three days ago I mentioned to my dad's physiotherapist that I'd felt a toe twitch. More than once.

Today, Dad demonstrated conscious and consistent control of his second toe, with some minor movement from the third and fourth toes. Although the latter wasn't consistent.

Every recovery story that I've read concerning Locked-In Syndrome speaks of movement starting around day 60. Today is Dad's 61st day.

Owl Eyebrows.

Which service, please?

Dad is back on a ward. Making the adjustment from Critical Care to ward life is really difficult. The noise, the people and the constant feeling of being in someone's way is a stark contrast to the past four weeks of solitary.

The ward he's been moved to seems utterly chaotic, and it perpetually reeks of poop. However, the team there has prior experience with Locked-in Syndrome.

Dad has regained some control over his right eyebrow. He makes me think of a mildly disgruntled owl.

No Progress


Dad started laughing.

It's not exactly what most people would consider laughter, but watching his face crease up and hearing the faint rasp of air against the tracheostomy is weirdly satisfying.

He was attempting to spell something out to me, and was getting really frustrated. He kept pointing down with his eyes as though it were something in the room, and something painfully obvious. To me, however, it was quite the opposite.

"Look," I said, "I know you're pointing to something, but there's a lot of shit in this room and I'm not Uri Geller!"

He laughed. Mum cried.