the visits

Visiting Lynn during the last six months of her life, and witnessing her decline into dementia, was hard. My way of navigating the journey was to write about those visits. I hope that the tragic sadness, the bittersweet moments, the humour, and most of all the love shines through. 

I have shared them here

Lynn the last months

August 2021

Words

You can’t grasp the right words from your mind’s mighty thesaurus 

now moth-eaten and disintegrating. 

As you search all those thoughts, names, places, faces, facts,

they turn to dust and blow away on the wind, your voice fading to a whisper of eyes-closed muttering. 

Then silence. 

I hold my breath 

We start again 

Occasionally you pause and say ‘I can’t…. the word’ which tells me you’re aware, awake.

Sometimes you plough on raking up whatever words or sounds surface. 

I smile, as best I can, and savour them.

.................

The Albums 

In the front of each album you wrote the year, location and names. 

They never held much interest for me before – your trips abroad with friends, your newfound identity. Your new life. Not being my father.

I was busy with my kids, living my own life, avoiding your desire to share yours. 

When you were the age I am now, no duty to ageing parents for you,

that was someone else’s responsibility.

You’ve always expected so much from me, you even tried to tell me how to be the perfect daughter.

Now that you’re nearly ‘gone’, the thread of communication with words so slack,

these photos are a lifeline.

Guided by your notes, I’m thrilled when we access a memory

and I cling to any clue in your words, stumbling to help you connect.

..........................

September

The Hug

When words no longer flow and meaning is hard to grasp

when smiles are not enough

the hug is everything to us both

I know this from the little sounds you make, the warmth of your body against mine,

the soothing rhythm of patting your back, your grip still strong.

This is what I’ve come for, this is what remains, this is what matters.

..........................

Flying by the seat of my pants 

I trust for now that I can remember the things left undone on my to-do list:

The reply not sent, the looming deadline, that conversation not yet had.

They surface on their own to the inner ‘urgent-important quadrant’ in my brain.

I take pride in this, which is dangerous, 

Flying by the seat of my pants may, one day become sitting unaware in a chair.

But then they won’t matter.

..........................

Away with the fairies

Is away with the fairies a fun place to be?

By the crease in your brow and the set of your mouth, I doubt it.

But then sometimes, when your eyes are not focused and you’re gazing somewhere I can’t see,

I wonder.

There’s a stillness and calm

and if I gently call you back, you’re surprised.

..........................

Only connect

Looking at photos worked once or twice, your initial interest has not persisted.

Reading to you, I thought, was going to be a winner. 

I was looking forward to reading the book you like so much

that you wanted to buy a copy for the entire team of care home staff,

but today you’re not so keen on the suggestion.

Singing Welsh hymns and nursery rhymes is something I can still try,

although you’ve not joined in the last couple of times.

Today even the hug was hasty, ‘I want to go to the lavatory’ you whispered in my ear.

At least that was as the lunch bell rang, and not as soon as I arrived for our short visit.

And when I wheeled you to hand you over to the staff, your face lit up with a smile.

..........................

The Visit

I see you before you see me 

There is a blank look on your face as I approach. I am wearing a Covid mask.

The room is busy, residents being moved in preparation for dinner at five.

We stay in the emptying lounge and once we’re alone, I take my mask off completely.

“you’re looking good! have you had your haircut?” I say 

“yes” you say 

(Lynn had a nice shower and hair wash earlier) says a passing member of staff.

“have you got a pound?” you ask and then I know you know it’s me.

We (well, I) talk about money, I tell you of all your amazing detailed preparation a year or so ago

that allows me to be the adult, and in charge of your finances. 

All is well I say, and for once, you brighten and believe me.

..........................

October

Sailing

We went sailing last time

right back to the beginning of my memories of it

to Karelia the tiny boat when we were kids, where Huw and I slept in the cockpit

under a boom tent and we rowed in the morning for milk-in-a-bag from the little shop on the shore,

Then on through the years; the boats and caravans and places 

West Wales, Lawrenny, Milford Haven, Neyland Thorn Island, West Angle Bay, Llanstadwell,

scampi and chips in the basket at the Ferry house pub in Hazel beach.

I hold your hands and remember the racing, raising the Spinnaker,

the drama, the daring, the weather, the Sea.

And then the Summers, coast hopping on Gwennan and Carossima in Ireland.

Crosshaven, Schull, Skibbereen, Kinsale and Glandore.

That evening meal we had at Mary Ann’s bar in Castle Townshend after closing time,

late from a day on the water. 

The harbours and trawlers, the pubs, which were also the bakers and post offices

The names of boats and places trigger comments and questions from you

and then you say with a playful smile “I really really really really really really

really really really really really really want …to get that sail down”

It is down, it’s stowed, someone else is taking care of your boat now.

..........................

The boat

your sails are tattered 

the barnacles have tightened their grip

the hull’s outer skin is suffering from osmosis 

the teak deck, once sanded down and oiled, still looks good 

the anchor chain is too short now to catch 

you’re drifting, not in a choppy sea in open water, but on a rolling swell in a featureless harbour

the fenders on other vessels preventing damage

the captain lashed to the tiller trying to navigate an unreadable map

..........................

Wrong things remembered

Who is the horrible husband you mention?

who are the two sisters who don’t get on?

I make a few tentative suggestions, dredging your memory with you

the two sister sisters could be your wife and her sister, I suggest. “could be” you say 

(the sister is dead but I don’t mention that)

instead I opt for a little potted history of what they fell out about, 

Pat and Jess, Kitty and Lynn, their parents

then you ask for more songs, or do I?

You can’t find the name of the one that you’d like

I guess and we sing three just in case 

‘Dafydd y Garreg Wen ‘, ‘Myfanwy’ (you remember more words than I do) and then a stroke of genius from me – ‘Calon Lan’ - sung with gusto 

I push my luck and start ‘I bob un sy’n ffyddlon’ but you stop me and say no, not that one

I sing ‘Tydi a roddaist liw i’r wawr’ as I wheel you down to supper. 

..........................

The Faithful

Not easily dissuaded, I try again

Let’s sing, I say – it’s Sunday

I bob un sy’n ffyddlon

(To each one who’s faithful)

We achieve a harmony that blows me away 

..........................

Difficult Questions

You ask me some difficult questions today

it started with the car

I found my car, you say, I need to move it, where are the keys?

 

You ask me about a place that you can’t remember beginning with S, the South Seas? I say.

We look at your drawings on the wall and I talk about the places you’ve travelled and sailed with friends

You ask ‘What shall we do about the boat? ‘

I read you the poem about places we’ve sailed and lived.

You enjoy it and say where is that written in Stone?

It’s not, I say,

I wrote it on paper and read it to friends.

 

I reminisce some more

That’s sad you say, very sad, two dead from the four, no three left.

I decide to tread carefully, who are you thinking of who’s dead?

Who are the four?

We try it out; you, me, mum and Huw I ask

Has something happened to him you say (he’s dead)

Well, I say, and I tell you gently

Oh yes, you say dismissively, I remember that

and then I impress myself by remembering the names of all your business partners from the 1960s

all the names bar one. My memory is failing and you’re no help.

(Gwilym! I remember now as I’m writing)

They’re all dead now. You were the youngest of them.

 

You ask, have you got the keys to the car?

I’ll move it somewhere safe I say. You’re not entirely satisfied.

..........................

November

Protection racket

“They’re the mafia - you have to do what they say”

 

When you need help to do everyday things

freedom of choice sits reluctantly on the window ledge ruffling its feathers

half in, half out, waiting to take flight

 

Deprivation of liberty scales are now tipped in favour of risk and hard truth,

Freedom is in short measure.

To protect you from harm you’re persuaded firmly

that’s called an offer you can’t refuse

 

Yes I suppose it is a mafia protection racket,

but you can call the Boss on the phone any time, just ask

..........................

Dreaming

 

when you tell me you have no money to pay your debts

to the organisation and the Chinese (it’s £50 when asked)

you accept my explanation with acceptance and mild relief

yes it was just a dream from your subconscious - the familiarity of paying your way,

of being in charge of household expenses

of even being the treasurer of a charitable organisation.

Handling the money is familiar to you

But they send me the bills now.

 

Later you even refer to dreaming yourself.

You ask me if I’m questioning or concerned about the light above.

Metaphorically? I ask

No, the actual light you say.

We agree you mean the roof over your head and I suspect you mean your circumstances.

but to make the conversation flow I extend this to the guttering,

it’s been cleared in your home, now rented out to tenants.

Is the house in good shape you ask

 

But I think I know what you’re getting at

Are you ok here

is this where you have to be

how do I know you’re ok

 

I’m being vigilant I say

I’m visiting, looking. (you seem well and as bright as someone wheelchair bound, with dementia,

could be)

I’m asking all the right questions, and being realistic, I add.

 

it’s enough

 

..........................

 

Politics and intrigue

 

One of them is a politician’s sister who’s having an affair with a journalist apparently.

It’s all been a bit of a scandal, she’s high-up in the labour party and everyone knows.

Jeremy Corbyn is involved – (he has been invoked before, during a manic episode)

There’s also a Jewish conspiracy underlying all of this – or was it an anti-Jewish conspiracy?

 

I didn’t find out if it's one of the carers - the politician’s sister, or the politician was having the relationship.

You move on to saying that she? or someone else was so fond of you that they wanted to get engaged

– not something that you wanted to take on.

 

Don’t worry, you don’t have to do that, I say.

Oh good, you say, that’s a relief.

I’ll let them know gently I say.

..........................

The allegation

 

It takes me by surprise as it comes out of the blue, half way through our visit.

And it isn’t what I’d been expecting.

I know that those with dementia can accuse care staff or relatives of theft

(you have 74p in change and a fake £20 note in your purse that lives in the drawer)

or of poisoning…

 

But this is worse

An allegation of serious abuse

I keep my composure as you lay it out with confidence.

I become the gentle forensic investigator (too many true crime podcasts)

Concerned, not leading, asking calmly and quietly for detail.

 

I get detail, in this room here, behind Paddington station, you couldn’t find or call me or Huw

(my dead brother)

You were walking down the corridor with the maintenance officer reviewing the building.

When did this happen?

Last Friday. (I have visited twice since then)

Where you hurt or injured I ask. No you say

He’s a clever one you say, you've reported it to the chief executive, but he charmed his way out of it.

He’s manipulative.

Is he still working here I ask.

No he’s been sacked.

You’re not to mention this to anyone you say.

Oh dear, but if I was the one who’d been attacked you would speak up, I say

We have to look after each other.

They’re not to be trusted you say.

I’ve deliberately not used the R word you used, not to reinforce it.

As I’m wheeling you down the corridor – there is, in fact, the maintenance man.

I didn’t mean maintenance you say, not a workman.

As we get to the entrance to the lounge, you say – this is where it happened.

 

My brain tries to untangle what might be true, what might be memory, what might be a dream or nightmare.

I contemplate what to do, how to do what’s best, how to control what happens next, how to judge what I’ve heard.

I head to the office and speak to the nurses in charge.

Again I ask gentle questions, has Lynn been agitated? Has she been afraid?

I talk around the problem, I talk about the typical allegations I know of.

Then I get upset. They are kind.

And so I tell them

 

They tell me I’ve done the right thing,

They don’t over react,

They are reassuring.

They say the (new) GP is coming on Monday and will speak to me and to Lynn

We talk it through and when I leave, I get in the car and howl all the way home.

I read some dementia relatives websites

It looks as though this is something else I didn’t know was common

How on earth does safeguarding work in situations like this.

 

I am there when the (new) GP visits, I have a chat.

He then introduces himself to you – you’ve always been suspicious of doctors

since you were sectioned in 2017.

It’s brief, and then I appear and whisk you off to your room.

Don’t trust that solicitor you say.

He’s a doctor I say.

Well he’s the one who did it, you say.

..........................

Losing everything

It's gradual and ultimately devastating 

you can think you're prepared 

you think you can ward off the inevitable 

but decline is shocking and unexpected when you come up hard against it 

you'll catch a glimpse of your own decline in a reflection or a photograph you delete 

but there's still no realisation that you too will, like your parents, lose the plot 

stop making sense 

slip away 

but still function in the least attractive way

..........................

December

Ted I'm tired and when I visit you're asleep in the lounge 

the lively resident Estelle, who always has something to say 

waves at me as I make my way along the Christmas decorated corridor 

saying hello to the ‘elves’, the jolly activities team

there's an entertainer in the dining room but your crew or opting out 

“can you help me” she says “I need to speak to my son but I don't have his number” 

“Oh dear” I say and relate the message to the carer in the room 

her reaction tells me that this is a frequent occurrence 

While the carer retrieves our wheelchair you’re still asleep

I sit with Estelle and ask about her son 

he's a teacher and she needs to speak to him, do I have a directory? 

"not to hand", I say 

I asked about her daughter who visited last week 

she says she's worried about her son and she starts to cry 

“There there“ I say and take her hand “don't worry it'll be alright” 

as I look around the room I realise that it won't 

The carer comes back with the mended wheelchair and a steady and hovers 

I can see that she intends to get to it 

“shall I wake Lynn gently” I ask “and give her a moment to come round”

We do. 

I take you downstairs a hot chocolate in the refurbished reception cafe area 

I bring a photo album

I can see that this may be a one-way visit already 

it is the increased dose of zopiclone to help you sleep has maybe dulled your connectivity

your words are slurred and we look at the album and I read a letter from an old friend 

but not one single person in the photos including that friend gets a response 

even when I tell you who they are 

Ted the therapy dog joins us and sits on my lap 

Thank you Ted, it's what I need right now.

..........................

Characters

There are some characters in the lounge 

the youngest woman with the bandage over her nose and swollen legs 

Kathleen who maintains a continuous hoarse narrative broken only by the chewing with gums

on a T-shirt like a teething baby 

there's Estelle the lively one who often waves at me as I approach and refers to Lynn as 'he'

How does she know?

She's feisty. 

..........................

Birthday blues

A birthday bus ride to have a birthday jab to stop me dying too soon

A birthday car ride to work

to have an online meeting 

and then a birthday stab to the heart of the matter

Returning a call to one parent, who meant to speak of birthday wishes

but instead spoke unprompted and uninterrupted 

of the same obsessive topic of 30 years 

and then, when noticing the silence

told me once again, jolly almost, of the failings of my other parent at my birth 

Thanks for the birthday wishes.

What I wanted, selfishly, I realise, were birthday kisses 

The other parent, in the past-caring home, is concentrating in the death-lounge

on colouring a beautiful hand drawn Christmas tree card 

we work on it together, a birthday dance in and out of recognition

“have you been here all this time?” you ask

“Who would you like to send the card to?” I ask

Resistant to my suggestion that this card could be a birthday card for me 

you're suspicious at my suggestion that it be that ‘to Olwen, with all my love, Lynn” 

(who is this Olwen after all?)

I try ‘to my daughter Olwen’

“why all my love?” you ask with reserve 

“with love then” I say

but when we hug you say “why are you crying for your daddy?”

..........................

Pat

You're in the dining room enjoying live Christmas music when I arrive 

“is that Pat over there?” you ask as I try  to get your feet onto the wheelchair footbeds 

Pat, my mother, your ex-wife, your only wife before, 33 years ago, you underwent surgery

to feel like a woman.

“no I don't think so, she’s not here” I say

As we sit and wait for staff to help you visit the toilet you say 

“I wish it hadn’t happened”

“what?” I ask

“that we fell out, that things became difficult between us”

“we're ok” I say, “we've muddled through, you've been there for me and I'm here for you now now”

I start to cry “I’ve been very tired and emotional today” I say

later back in your room we sit and try the new slippers I've brought you 

suddenly you break into tears and sob 

I give you a hug and say “there, there”

“I wish it hadn't happened” you say again 

“what?”  I ask 

“I shouldn't have done it,  I shouldn't have changed sex. I didn't need to.

I should have been happy as I was, as we were”

I’m on high alert.

“you made what you thought was the best decision at the time” I say 

“you were brave, it was a hard thing to do, you were successful and you have been happy”

“yes” you say 

“you waited until the children were grown up and did the best you could” I say 

“we don't talk much about our daughter” you say

my suspicions confirmed - she thinks I'm my mother 

“Olwen?” I ask

“yes is she alright? does she blame us?” you ask 

“She’s fine!” I say, “in fact she’s great!, she’s kind and happy

she loves you and she loves me (?!)  you've been a good father, you're generous and loving

that's all anyone could ask”

..........................

Dark Time 

It's been a dark time 

I have narrowly avoided the rocks 

rowing hard against the overwhelming sea

Imagining murk and gloom, that shipwreck is inevitable

grappling with dark thoughts and my own siren call -

which you is you and who am I in this 

until the dawning of a thought

If I let go and let the wind blow, let the tide take us 

the storm will pass and I'll find clear passage and peace

..........................

What is it you’re after?

Although you can't articulate the question that is urgent 

and can't reach or describe the object you're searching for

on the floor,  around your person, in the corner of the room,

your meaning (I think) is clear 

you’re after reassurance, in business mode, confirmation,

you're maintaining control of something and you're instructing me with a Secret Mission 

I accept, momentarily having to remind myself that I can do this 

It really is Mission Impossible, but I accept with gravitas and integrity 

we end as always with a hug

and as the countdown of breaths and pats subside we both relax 

we didn't self-destruct into Oblivion 

mission accomplished

..........................

January 2022

Railways of the middle east

I lower my expectations before this visit 

the last one was hard

leaving me feeling that my presence not only made little difference 

but even made things worse not better 

I’d brought a pencil sharpener and some adult colouring sheets

and also learnt who the custodian of the pencil crayons is 

You needed the toilet as soon as I arrived

has it become a pavlovian response? 

the colouring is not a hit, wrong seating arrangements today

you do however remember the name of people that you'd forgotten some weeks ago 

I can see that you're struggling to talk and frustrated and exhausted by it 

so despite a negative response to my suggestion 

I read an article that I enjoyed from The Economist -

The Railways of the Middle East

It's long and you appear - eyes closed to be sleeping 

although I can see that your body is alert 

Hoorah for your classical education and your interest in history 

as I read the place names and the details of civil wars and conflicts 

it's like rediscovering a neural network of rail tracks criss-crossing country and cultural boundaries

Even before it ends you're making comments and observations 

you're relaxed and smiling 

we make the connection on the railways of the Middle East

..........................

only connect 2

Even now, after all we've been through

hope remains as a faint glimmer

the future invisible before us like fog clearing into moments of focus 

connection is still possible in ways we wouldn't have imagined 

the sound of laughter distilled into a smile 

words now not needed 

all we know concentrated into the touch of your hands holding my face 

..........................

Memantin moments

Since the review at the beginning of the week you've been  on on a drug to reduce the effects of dementia

Today you were more articulate which is bittersweet 

The stark reality of your situation, the likely future, is clearer to you

Among the tales of recent imaginary events 

are sharp insightful observations and the kind of analysis from which 

your intellectual prowess shines through

I don't demur or obfuscate when asked if you've made the right decisions that led you to this place

You had and have no choice 

you don't mind being told the sequence of events that led you to be 'the cared for'

rather than 'the professional' 

“how can I live with purpose?” you ask 

“we'll work on that” I say “everyday has little moment to watch out for” 

We talk about the ‘bonkers’ girl who is, as you say 

“One of the animated as opposed to silent” carers 

which are the two types according to you

 all masked so indistinguishable apart from their manner 

“she's very fond of you, she likes helping you through the day” I say

“and you've also done so much to remember” I say 

“I will help you, I am the custodian of your memories”

“Yes”you say 

but you cry as we hug 

..........................

The last time 

As I relax into our visit,

aware that today will be an eyes closed garble of words

describing a dream-like interaction with ‘Pat’ (your ex-wife) and ‘Olwen’ (me) and a cast of others,

I read you an email from an old friend and showed you the pictures

Eyes open, you look at me and smile, leant forward and kiss my cheek 

“why do I get kisses?” I ask 

“when you were little you’d look at me like this and it would melt my heart” you say 

“it still does”  

That'll do for me I think 

..........................

February 2022

The end of the adventure

I am surprised you made it through the night 

although when we left, you were the most peaceful you'd been all day

I'd been for a walk, a break from the vigil 

discovering a network of paths and lanes through the housing estate, a stream and trees

We left you, Hannah and I, having said everything that needed to be said (again)

and sung the songs (again) to ease you to the end of your journey

We are on our way back in next morning when we get the call

5 minutes away, just around the corner 

you are still warm, laid out with love and care

You've been ‘gone’ for a couple of days 

but now it's over, the end of your adventure

..........................

The morning after you died

As I look out of the kitchen window the sun peeked, burnished red, above the horizon 

I watch it through the hole in the hedge which I and our robin love

I even dare to be happy

Exhilarated by the beauty of the moment

A life well lived passing 

and a new day, constant and faithful, rising up to greet me

I stand outside at the gate for a better view 

and then feeling the morning chill 

walk back inside for coffee

..........................

What Now 

Since I've been writing regularly you've been my muse Our conversations as you slipped further away into the muddle of dementia  caught on paper my words capturing your struggle to find yours

But now you're gone 

what will I write? 

it has brought me joy 

it's been a compensation of sorts 

it's been a lifebuoy in a stormy sea 

I'll be lost without you 

Oh! Look! You're still here