Wet Wheels

I had my doubts, a lot of them, but it seems we have been encapsulated in a bubble of support and love.

We meet Peter at the key side with his lady volunteers. The sun is shining and the sea conditions are good. The best day of a week, which has been fraught with cancellations due to sea fret and sea swells.

We don our life jackets. Our youngest has brought along RLNI Ted also wearing a red buoyancy aid. She’s a little nervous. Her big brother has told her tales of the high sea, it will be his second trip aboard ‘Wetwheels’.

On our last adventure we were incredibly fortunate to see seals dolphins and minke whales, today only a few playful seals put in an audience but the trip takes on a whole different adventure.

Today it’s all about going fast and getting wet.

As confidence grows the boat heads out into the sea, the familiar landmarks of the north east coast grow smaller.

The inky sea meets a clear sky and the horizon goes on forever dividing them both, the occasional inquisitive seal checks us out.

There are eight and four crew on board. Our nucleus family fused together for fun on board and a shared adventure.

Ken is the first to get wet. Sat next to James on the starboard side I can see his glasses getting steamed up with spray. I’m not sure if he’s happy at first, but then a huge grin covers his face as the speed board cuts through the waves.

I’ve our granddaughter on my knee at the aft. She very quickly overcomes her nerves and sways with the rock of the boat, urging it faster. Her ‘old sea dog’ brother leans his head into the stiff breeze, looking every inch the Captain’s mate, loving every second of exhilarating action.

The rest of the grown ups listen to Peter’s expert commentary as he points our things of interest and shares his passion for this coast line. No one thank goodness is looking green.

We share the contents of my cool box, with crew as Peter cuts the engine for a little while, I was told to bring cake, but we’ve sausage rolls again and sandwiches as well as very posh macaroons from Betty’s. It is a sociable, friendly affair and an opportunity for photos with some of my most precious people.

I think we covered 81km, and we’re out well over two hours but it is the return journey that will be etched in all our hearts forever.

‘Who wants a turn to drive?’ Peter asks.

Of course our red tousled haired grandson is keen.

All under very close supervision of course, and risk assessed, but of course he’s not aware of that.

He takes his place in the driving seat.

Already accomplished in a golf buggy he has progressed to a speed boat in three days!

The concentration is intense, I don’t quite think he believes he’s been given this opportunity. Last time he was aboard we had to practice social distancing and Covid rules, this is a whole new experience. A special opportunity that boys can only dream of.

Ken also takes his turn in the hot seat. I don’t need to say a single word to Peter he has seen how Ken has changed. In the last two years dementia has stolen more than perhaps we realise until we revisit this point again from his past.

Peter and his crew give Ken a chance to feel something though. Something normal life doesn’t often do these days. Ken feels he’s in control, that’s a powerful emotion, in charge of a powerful beast of a speedboat. That’s one to build self esteem and pride.

Last but not least our four year old takes the helm. Mummy can’t believe it and almost faints . I’m amazed at her poise and confidence again. You’d think she has been skippering boats all her life. Peter guides he every move of course, and she executes a turn that throws water all over her brother and Uncle James. They are absolutely soaked, but this is the game, and we all howl with laughter.

We head back to the harbour with lips tasting of salt and hair like straw. Jovial banter and happy faces. Ken has loved his birthday adventure I’m sure of it, but understandably is beginning to flag.

Every thing about wet wheels is aimed at giving people with disabilities and their families the opportunity to make magical amazing memories to share and cherish.

Even if the memory eventually fades for Ken, the rest of us have had an afternoon we won’t ever forget and will treasure forever.

https://wetwheelsfoundation.org/locations/yorkshire/

On route

And so we are off.

It’s been a rocky road to get going.

Ken told me he wanted ‘one of the other’s ‘ to help him get ready this morning and was difficult at every stage. My heart sank. Today is a big day and the start wasn’t holding much promise.

Organising any thing with dementia in the mix is always a risk, you just never can tell if what is going to happen has been understood. No matter how exciting and how much effort has gone into this planning.

I’m close to crying but carry on, and eventually with a lot of persuasion and cajoling Ken is dressed between his wandering and refusing.

I am beginning to think that today will be an expensive disaster. Wondering if now the time has come to employ carers to come in the morning. If Ken doesn’t want my help and can’t do anything for himself the choice might be taken out of my hands.

With guile and dependence on my nurse skills I get Ken to take his medication. It’s getting harder. First thing after a long night he is so confused and disoriented and until his tablets start to work simply can’t comprehend anything. Where he is , what he wants. Who I am.

I’ve a sinking feeling that there is another disappointment looming, but know now only time will fix things. I leave Ken with a cup of tea and the tv while with out any enthusiasm at all I get my self ready.

I’m washing the pots when Ken appears,. He’s wearing his sky blue teeshirt with the ‘wet wheels’ logo. I’d hoped that it might be a visual cue earlier when I’d explained our plans for today.

Anyway if nothing else there’s no doubt that the colour looks good against his tan.

I’m therefore very surprised when I look up his brown eyes are smiling, and he wraps his arms around my shoulders.

The relief is massive. Ken is back. Suddenly the sun is shining again,

And so James is driving us to Whitby. Abba is on the radio and whilst I blog in the back Ken is relaxed and content watching through the window. A completely different person.

The one we want for this special celebration of his 60 years.

More to come.

Intervention

We’re both a bit tired today. Mine mainly from managing expectations and keeping a lid on things.

I know it’s important have a bit of quiet time and with Hettie happily walked and sandwich platters ordered for Sunday’s family birthday tea party I can at least tick a couple of things off the ‘to do’ list.

Stress is different for everyone, I’m sure like many in our situation I carry a constant load that I’m so used to I barely notice, like a chronic condition you can’t fix. Constantly being on the go the unhealthy antidote many of us prescribe to, but there is so much to do whilst Ken has a nap. It’s a bit like being a new Mum, you know you should rest whilst the baby sleeps, but then that big pile of washing won’t sort itself.

I hate having to organise things I trusted had already been organised.

Ken’s two week neurology referral has never materialised.

I have creeping doubts I need to intervene.

I spent some time speaking to the GP receptionist on Monday, only to find out no such mention was made in the discharge letter from casualty. She repeats again it says ‘no follow up required’. She will send a message to the duty about what I’ve said. It could take a couple of days before they’re back in touch.

I was told by the A and E doctor that an urgent review for further action would be sent to ‘the first fits clinic’. And that the neurologist would decide if Ken needed any treatment following his seizure.

There is no doubt he had a full blown fit. Tonic clinic spasms, a bitten tongue and incontinence. Since then we have had this strange vacant episodes, possibly petite mals, that’s why I’m keen to get him investigated.

I got a call from the GP receptionist whilst shopping for donuts in Sainsbury’s yesterday. She’s sorry but the practice can’t do anything, as Ken was admitted to Casualty, I’ll have to contact them.

My heart sinks. It’s rather like trying to find a needle in a haystack getting hold of the lovely registrar who looked after Ken and asking him about the discharge letter. I’m sure he’s very busy dealing with the heat and new emergencies.

Luckily for me I’ve a little knowledge of who I need on my side.

Medical secretary’s.

They often have access to information and can check the notes and records, it’s just a case of trying to get a direct number.

I’m not actually sure who I need to speak to. The hospital switch board is friendly but I’m not easy to help. His directory needs specific extension numbers or names. I know I’m in trouble when I have to spell ‘first fit’.

The person he puts me through to has absolutely no idea what I’m on about. I apologise and put down the phone.

I’ll try the neurology department.

By navigating the system I eventually get the renal and neurology department secretary. When I phone it’s an answer phone.

Leave a message, she’s remote working and will reply as soon as she can.

Meanwhile I’ve finally found a number for the emergency department admin. There’s no one a available.

‘Try again in five minutes’ a male answerphone voice tells me. I do try five or six times. Same message.

I can absolutely understand why someone a little less tenacious would simply give up, instead I phone the neurology secretary again and leave a long convoluted message.

I decide to put my efforts into the birthday celebrations. I’d already spent too much time disengaged, and couldn’t think of anything else I could do yesterday.

To my surprise get an unexpected call this morning.

‘Gillian’ the neurology secretary. She is so warm and friendly and says she will check the system. No they hadn’t had a referral. There are 15 others waiting already for the ‘first fit clinic’ two weeks was never going on be viable. Unfortunately she can’t help until she has a letter, I’ll have to contact A and E after all.

I ring the number I’d tried yesterday. The phone rings and rings and I’m expecting the answer phone message again. To my surprise another helpful lady picks up, when I explain the situation she promises to look into it and get back to me within the next half hour.

I’m not holding my breath, but I get a call.

She tells me that she has just handed the referral herself to Gillian. The emergency doctor had done one so why the GP had the information to say there was no ‘follow up’ she couldn’t explain.

Lost in the system, someone’s small mistake. But with a juggernaut as large as the NHS these things are going to happen.

We will wait to see if the appointment arrives in the post, but I now have two points of contact and two actual people to speak to, though once again it feels like I’ve had to battle the system for Ken.

Sixty years and counting

I’m not entirely sure Ken understands when I wish him Happy Birthday first thing, but when the grandkids charge in with croissants for breakfast I think he realises it’s not a ‘usual’ Wednesday.

Golf and our grandson comes too. Everyone makes a fuss of them both, I fasten a big ‘60’ badge on his golf trolley just to be sure.

He’s noticeably slow though, hits a couple of decent shots in the driving range warming up but then completely looses momentum. I don’t usually follow around the course but our seven year old is having a whale of a time. He even gets to sit in a golf buggy and steer. The volunteers are absolutely fantastic with him and are more than a little aware keeping him happy makes Ken smile more than anything else.

It very clear when Ken attempts to take a shot, there is something missing between the signal from his brain to his limbs. He stands for ages, at first we think he’s lining up the shot, but it quickly becomes clear he doesn’t know what to do again.

If he doesn’t try to think, but simply uses muscle memory automatically, he can manage some great strikes, but today rather like when we all overthink things, he becomes frozen.

Our grandson picks it up too, as do the amazing volunteers, they don’t let Ken flounder, assisting discretely. When he does manage what seems to me a terrible shot, they clap and praise his effort enthusiastically. I can see our grandsons puzzled processing, but then he offers his congratulations too.

There is cake and doughnuts, cards and singing. We all appreciate the relatively young age that Ken is, one of the carer/wives confesses she hadn’t realised Ken was fifteen years younger than her husband. But we’re not wasting time thinking about dementia today.

The drizzle of the morning turns to periods of warm sunshine this afternoon. I’ve a good parking space thankfully, and unload our picnic and chairs. I’d prepared for every eventuality, umbrellas and sun hats, we find ourselves a prime position for the ballet performance staged on the bowling green overlooking the iconic views and backdropped by castle ruins.

The local ballet school has been weeks prepared for the ‘Tales of Beatrix Potter’. There are rabbits and ducklings and children in reddish brown costumes that I guess are squirrels. We’ve turned out in force as a family to support our granddaughter, only four but with a confidence and poise belying her tender age.

There is a lot of skipping about, she has three costume changes, and takes it all far more seriously than some of her peers. With her auburn hair in a tight bun she seems so much more grown up.

There is quite a crowd, the music is cheerful, we’ve food and squash to drink. An opportunity to be together, celebrate a birthday and enjoy the atmosphere.

I know Ken will need his tablets by late afternoon, by four o’clock there is a change. My daughter noticed it too, time to head home.

Ken is tired, but although he needs to rest can’t settle. We video call his sister on the group chat. The restlessness doesn’t really settle until the family descends again with fish and chips for supper, Ken’s favourite.

The candles on the cake are lit again, it didn’t get cut earlier, everyone sings in full voice including Ken. ‘HAPPY BIRTHDAY DEAR KEN….GRANDPAAAA….DAAAAD’ .

When it comes to blowing out the candles there is a united spontaneous explosion of surprised laughter, instead of blowing Ken whistles a few notes, and buoyed by the response gives us all more.

It’s caught on video and is priceless.

A neighbour pops in with another card. Ken smiles,

‘I just don’t understand it’ he says bemused.

It has turned out to be a far nicer day than I could have hoped. A few wobbly points but a huge improvement on recent events.

There is more fun to come planned over the next few days, it’s just a case of being vigilant and watching Ken’s mood to make sure he isn’t over stretched.

‘How old are you today Ken?’ I’ve just asked.

‘I’m the one’ he answers.

Well I have to say, you can’t argue with that!

Time management

Third nap of the day.

As my sister points out after a couple of hours of anything, the effort needed by Ken’s brain is exhausting, and he’s had to cope with so much of late.

All seemed to be steady away this morning, though after breakfast Ken went back to bed still tired. He frightened me dragging with him the bedding off the bed behind him on the stairs…

Potential trip hazard, we’ve had enough falls of late.

I didn’t want to rush him, so we missed out on the Sporting Memories picnic. Postponed due to the high temperatures last Friday, and relocated in the sports hall instead.

So getting up and ready was a dignified and sedate process. I was thinking all was fine.

We took Hettie for a change of scenery and a steady stroll by the river. She went in the water and turned completely scatty, her hilarious antics making us laugh.

I’d promised Mum we would call with milk.

I parked the car, let Hettie out and opened the passenger door for Ken. It was then I noticed the change.

He wouldn’t, no that’s the wrong word, couldn’t is more accurate, get out.

Almost frozen, he didn’t seem to hear or understand a word I said. When I attempted to help him swing around his legs they felt glued to the footwell of the car.

It was strange. Once again it felt like he ‘wasn’t with us’.

I talked calmly and gently, not a flicker.

I decided to abandon the situation, put Hettie back in the car and run upstairs with mum her milk. She’s otherwise engaged, I just call ‘sorry mum can’t stay, can’t get Ken out of the car!’ And rush back. He hasn’t moved, but I feel a double guilt.

I fasten his seat belt again and tell him we’re driving back home. Halfway he seems to come round. A mini fit? Something Parkinsonism?

This one has certainly foxed me.

Ken eats beans on toast in Kenneth fashion cleaning his plate. Then gives all the telling signs he needs a rest. Another hour’s sleep.

Our chicken owning neighbour spots me in the garden, and whilst we chat Ken comes down dragging the blanket off the bed behind him again, joining us on the lawn. It must look very odd to anyone else, a grown man with an enormous security blanket.

When our lovely carer’s resource friend arrives so I can have my re arranged contact lens appointment, all is well.

They have a drive and sit by the river.

She has a lovely card and mug for him, I’m not totally convinced he knows it’s his ‘noughty’ birthday tomorrow but seems pleased nevertheless. It’s a useful and thoughtful gift.

As soon as she leaves he is asleep again on the settee. The much enjoyed burst of activity has left him drained.

We’d planned to meet ‘old friends’ for a meal tonight. But I think it’s clear Ken is not on form yet. Meeting and eating in public is a challenge at the best of times, and over stimulation at the moment has its consequences. Head has to rule heart again, another big disappointment.

I chase up the neurology referral to find that despite been told in casualty it would be ‘2 week’ it hasn’t been done. The GP will get back to me.

I email the CPN with the developments at the weekend.

Next job is to sort out banners and balloons.

Fingers crossed

I think today is going to be okay.

I hope they aren’t my famous last words.

So far so good. Ken gets to football group with out incident. Dog walk, then long chat with Mum. Sometimes as we know conversations can be difficult but necessary.

I’ve a call to put up the sun umbrella to shade next doors rabbits, I am also glad to be of taxi service. Others have problems too, if I can return a favour I always will.

I’m on grandma duty this afternoon and with little hands in mine we head into town.

It’s the annual festival of entertainment and arts. We eat a light lunch at an out side table and watch the oddly dressed man performing tricks and swallowing fire. There is juggling and balloons and a challenge with chocolate biscuits. Our youngest participating with me for support, the older one is filming us on my phone.

Ice cream of course, and a paddle in the pool in the park. It’s not so hot, with hazy skies and a warning for thunderstorms later.

We need the rain.

Home for an hour before picking up grandpa. One is watching tv the other surrounded by soft toys telling them a sweet made up story I’m doing my best to listen in to.

One teddy has a split seam, He will need an ‘operation’ to sew him up again. It starts an interesting conversation about what we are stuffed with and how we can be mended. I just love these little chats. Also turns out to be a simple sewing lesson.

I’ve always loved children and their thirst for knowledge, and know just how quickly their intellect will exceed mine. Pretty sure I won’t keep up with them much beyond Key Stage One.

The two little people take charge when we pick Ken up. One in each hand it is they who guide him to my car. He’d have no clue what it looked like otherwise but it really doesn’t much matter, the picture of the three of them is looked upon by all with smiles.

Ken is tired, I’m told he’d taken a while to settle when I dropped him off but coped. He didn’t eat much lunch but had two puddings. He has his medication straight away when we get home and settles for a sleep on the settee.

Don’t want to jinx things but as I said earlier, his birthday week has started okay, 🤞

The predicted rain held off for now.

Superstitious Sunday

When I cracked open my fortune cookie the other night it read something like ‘There may be trouble ahead.’

We all laughed surely I’ve already had enough bad stuff.

James is buying a lottery ticket this week for the euro millions.

Hopefully his prophecy will come true, he’s to expect ‘good fortune’.

Mine certainly did.

I’d kind of thought things were on the up again when I put Ken to bed, but the early hours phone call changed things.

Mum’s medi – alert. She’d had a fall. Ambulance had been called. I rush straight over in my pyjamas, telling Ken to stay in bed. I text the Kids, James immediately replies he’s on his way to be with Dad.

Mum is on the living room floor. In pain but conscious. I won’t go into the details. It must be about an hour waiting for help, but for Mum it feels much longer. I phone my daughter close by to see if she can help me move Nan. My sister drives the twenty or so miles to help. The ambulance arrives at the same time as she does. Mum is still on the floor.

The ambulance trolley won’t fit in the lift. The crew of five firemen arrive to carry mum down the stairs on a spinal board into the ambulance. One it transpires is an off duty paramedic also a voluntary fireman. He seems to take charge, some people are definite hero’s.

My sister goes with Mum to hospital.

I get back home about mid morning to find Ken struggling again. James has managed to get him to eat breakfast, but he isn’t good.

I am in no doubt what the issue is. His medication is late.

He is some where else in his mind again. A land where kind people have turned nasty, I get the suspicious glare that tells me paranoia is in control. James witnesses how I bear the brunt first hand.

We know he has to have his tablets, I know for fact he won’t take them from me. I’m trying to poison him after all. James volunteers and is very thankful when he swallows them down.

It’s a case of waiting for them to kick in. Getting a shower or dressed is going to have to do just that…..wait.

About an hour later and it’s clear there’s a positive move in mood, like the sun dawning after a black moonless night.

The family switch shifts, my daughter sits with Dad a while, James goes home. I’m blessed to have the pair of them, and couldn’t manage my life with out the support of everyone around me. I’m no Martyr. We are a team.

Ken naps in his chair, we’re left alone for a while, I can visibly see the tension leaving his face as he relaxes.

I phone the Crisis Support Team for advice. The Nurse advises me how to tweak Ken’s medication. He wakes and when I offer him his second dose as recommended he is compliant. I help him shower and dress with no issues at all.

More positives.

I’ve a call from my sister, mum is pain free and waiting for assessment. It makes me think the amazing properties of pharmaceutical drugs and the power they have on our bodies and minds to heal so many different ailments and pain.

I wonder how soon they will find a cure for dementia, tablets can do so much for other diseases and symptoms.

The family come round at tea time. Ken is a little distant but not distressed or distrusting. We had all planned to join the annual afternoon Picnic on the Green. Instead it is a family affair in the courtyard.

Mum is discharged, no broken bones and will have a Domiciliary visit tomorrow.

A stressful day that ended better than it started. I’m writing in the inky black of the garden underneath the stars.

Hopefully the curse of the fortune cookie has done it’s worse.

Birthday disappointment

What do I do when I don’t know what to do?

Blog.

I was so looking forward to the party.

So much so I can reveal we even attended the venue a month early to find no one there.

I’d written the save the date on the wrong month on the calendar, and worries about being late because of the Yorkshire Show traffic had rather clouded my brain.

A surprise 70th for a lovely lady who follows our story. I couldn’t mention earlier for fear or ruining the big reveal.

We’d got suited and booted and I felt rather stupid telling Ken I’d the wrong date, never mind we’d joked and gone out for tea instead, though I was disappointed it was a beautiful evening.

We’d met this special lady a couple of weeks ago, talked about birthdays as her’s and Ken’s are only a day and a decade apart. A fact I actually knew, but had completely forgotten as far as the party was concerned.

So I’ve mentioned it, the fact we got the wrong date and the surprise a few times this week. Albeit in between all the other things going on, Ken seemed keen to go again, we’d laughed at my previous daftness.

But to be honest I’ve felt a bubbling undercurrent. Watched my tone and words. We’d the kids for drawing and painting with our daughter this afternoon, and the party came up in a positive light again, but I just had a ‘feeling’.

I showed everyone the dress I was going to wear, and we agreed it would soon be time to get ready. There were strict instructions not to be late.

As soon as my daughter left I felt the downward shift in Ken’s mood. I showed him the trousers and shirt I’d ironed this morning, ‘Did he approve?’

He seemed okay with what I’d prepared.

Then it all went very wrong.

I try to explain he needs to undo his shorts and take them off to put on his trousers. Ken knows better.

I’m in a state of shock as he glowers at me and pushes me out of the way. I’m not going to argue.

I give him time, and jump in the shower as he tries to put his trousers on top of his shorts, but they won’t fit. He is cross.

With only a towel wrapped around me I try to help, my assistance isn’t accepted graciously rather through the angry resignation he needs me.

I dress and hear Ken trying to open the front door downstairs. He manages to pull off the back of the letter box and put on the security chain.

I know he wants to walk.

I consider what to do. Do I unlock the door and let him go?

In fact when I offer to help him I’m met with such repulsion I know better than to intervene and call James.

He is always able to defuse such situations.

I catch a bit of Ken on video on my phone. He is too distracted to notice but it can be a very valuable piece of evidence for his CPN, the loathing towards me is hard to bare. I know it is the illness, I really do, but my pain is real.

James arrives, Dad is very angry with me but listens to him.

I send a text to the Birthday Girl’s daughter, so sorry. I don’t want her thinking we’ll be late arriving and spoilt the such anticipated surprise.

I forward it to our daughter who immediately phones. She’ll come to relieve James. They both have plans tonight but he’s got tickets to watch a band.

She asks what she can do, and persuades without too much difficulty Ken to take his tea time medication. He ones he’d refused from me.

I need a moment and with her in control of the situation I walk Hettie in my party frock, feeling so so disappointed. But then I’ve lost the appetite for partying now.

At my insistence she goes back to her visitors.

I’m left with Ken, he wanders around again with that steely stare. He can’t work out what it is he wants, or where he wants to go. I let him carry on and actively avoid him, changing into my pj’s.

He’s soon asleep in his chair.

As my daughter says he’s never really done parties. She still hasn’t forgiven him for refusing to dress up at her 18th Grease Party. He was the only one not to make an effort, she gave the excuse it was his depression stopped him joining in.

But I don’t think this was anything to do with the party. All to do with me. He made that very clear verbally and non verbally. And as my neighbour rather sweetly reassured me when he saw me I wandering in the garden.

‘You always hurt the one’s you love the most’.

He has experience of dementia.

So I hope it’s a really fantastic party. I’ll expect to see the pictures. I know special lady you will read this, and I know that you will understand.

And my God, there is no way you look your age! xxxx

Later…….

Ken wakes and recommences his wandering. Round and round the court yard looking over the locked gate, a forlorn figure.

I watch from behind the bifold doors, he then begins to rearrange the garden seating.

As dusk falls I ask if he wants some supper, to my surprise he follows me inside. His demeanour has changed. Almost meek.

I just want to be able………like the others……

He looks at the table outside where he’s enjoyed the recent company of his male friends. It’s poignant.

The red mist has lifted. Almost certainly his medication working. Unfortunately he has missed a few doses this week due to his vomiting and the deficit was telling.

He can’t find the words, but kisses my arm resting on the kitchen table along side his cereal bowl.

It says ‘sorry’ I’m sure of it.

He knows he lost control.

Getting ready for bed he is a very different person. I tell him I’m here to help, nothing else. I’m a woman, I’m not trying to emasculate him. I wish things were different, but they are what they are.

And so once again the calm descends. The night here could have had a very different outcome, but it didn’t and we’re fine.

I really hope the party is in full swing.

Calmer waters

Another day, and all is calm.

We’ve both slept well, I feel like a different woman.

I’d been a little anxious last night especially when Ken couldn’t grasp that you should take off your shorts to put on your pj’s. He spent a good half hour fiddling to refasten his belt, the simple process to complete completely back to front. Just another example of the fight for independence. I curb the urge to interfere.

He’d hardly settled for five minutes all day, driven by the need to be somewhere. At one point yesterday I’d a call from a neighbour to say Ken was fiddling and trying to get into the car parked under our tree. I don’t know who it belonged to, but it was definitely making Ken anxious. My immediate thought was ‘oh no, are be going to get the learner driver scenario again’. His obsession with cars was a difficult phase.

But when I eventually got Ken into bed he seemed to drift into a much deeper sleep straight away. I admit it took me a while to drop off waiting for him to robotically sit up again, but he simple rolled on his side and started snoring.

It’s just before 7am when I awake, Ken is patting the bed clothes.

It doesn’t take much to rock the boat these days, hopefully we may have some calmer waters for a little time until the tide turns and the wind changes direction and heads us back into the next storm.

A bad night

Another stifling night,

The pacing relentless from midnight,

The face of anguish,

Lost in the dark.

I’m a stranger

Followed by suspicious eyes,

The world of reality exchanged for a far sinister place.

No words can sooth,

As if a foreign language on deaf ears.

I can only watch,

Be there.

The hours pass,

My heavy eyes desperate for rest,

But keep on the lookout for danger.

He won’t share my bed,

I’m not to be trusted,

The voices in his head speak,

They tell the truth.

Eventually an unsettled sleep,

Twitching limbs and restless moves,

I keep vigil,

My body crying.

Unsettled Hettie needs the garden,

The night air sends her scatty

I chase her back inside,

A ridiculous game for the hour in my nightie.

And then it starts again,

Dawn has broken,

I lie, one eye open

The folding of bed linen,

And smoothing of pillows

A ritualistic cycle.

No choice,

That’s how it is,

Resistance at every step of the morning routine.

Buttons fastened, undone and refastened,

I dare not interfere, my tone is low and level.

And then the fog slowly lifts

Hazy maybe, but the night terrors are banished to the dark.

A long hot day ahead,

For one the early hours forgotten.

The reality of dementia.