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Dementia, my Dad, and me

Mum & Dad wedding

You went for respite and didn’t come back …

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You went in for your normal respite stay last October. That’s how it started off, but I also needed to go to the office more frequently. Mum was by now just too frail to cope.

The social worker checked that you were settled, and it was decided that you would stay.

In a way, it was a relief, Dad. I already knew it might happen this way, and I had been dreading if it didn’t and having to drop you off for the final time, knowing that you would not be in your home ever again … that same home that you shared with Mum all those years.

What did you call your married life with her?

‘Three life sentences’, with a twinkle in your eye … and Mum would say:

‘Yes, but for whom? Certainly not you; you’ve been spoilt’, and you would laugh, knowing that to be the case!

You used to tell us how you first met: how you had looked across the dance floor into Mum’s lovely brown eyes and how you just knew. And how you swept her off across the dance floor out of the arms of the partner with whom she was dancing.

You had forgotten so much but you never forgot your love for her.

‘I’ve loved you from the first moment we met’, you said to her.

So that’s why it didn’t surprise me when Mum returned from her first visit and said:

‘He was so thrilled to see me. His face lit up, and he told me that he was so looking forward to us being together again’.

I needed to brace myself for my first visit, because that comment cut through me like a knife and, tears pricking, I turned away. You will never be here with us again, Dad, sitting in your chair with a happy smile on your face, I thought.

I looked at Mum, tired with all her hospital and doctors’ appointments, physically unwell herself and with the upset of the last few weeks: the financial assessments the comings and goings of various people and Dad leaving.

‘Are you alright, Mum?’ I asked.

‘I’m just thinking of your Dad’, she said, ‘of the first time we entered this house and how excited we were about our first home’, their first and last…. and our home too, my sister’s and mine.

And I sat and thought of my childhood here, of Dad always in and out with so many activities on the go and so many people to see … of Mum, tired with her commute to work and constantly multi-tasking when we were young … of her love of reading and escape into literature … of Christmases past, coming home to Mum, so excited to see us, to the glass of wine she had waiting for us as soon as we stepped into the house… of Dad’s smiling face … happy memories …

Although my sister and I left long ago, it seemed that it was only when Dad left for good that our little family unit was no more.

The First Time …

When I went to see you for the first time, Dad, I went armed with your favourite biscuits from home and two takeaway coffees purchased from a hotel near the Care Home. When I opened your door, you were lying on your bed, and I initially wondered if you knew me at all. I needn’t have worried …

Your breakfast was on a tray in your room, and I wondered why you hadn’t eaten it in the dining room with others around you. You were always such a friendly, person. When I asked, you said that people weren’t talking to you. You worried me, Dad. I stayed for lunch with you and, sitting in the dining room, realised that they just didn’t talk to you or anyone, only because they were no longer capable of it, but it still hurt.

Dad, wherever you went, you joined in. Your off-the-scale extroversion embarrassed me as a child; now, I just wanted it back again. And I wanted you around people who responded to it positively.

We did eventually have a laugh together that first time I visited. We talked about your other daughter, my sister, Tracey, about Alec, your grandson, and about my brother-in-law, John, and I made light of things. I didn’t mention Mum or the fact that I was still based with her, and that her health issues were catching up with her too. I didn’t want to unsettle you.

We had already decided that we would try to take our leave in a way that wouldn’t upset you. We wanted you to be left with feelings of love, not abandonment.

So, I waited until you said you were tired and were resting on your bed. I sat watching the rise and fall of your chest. I took one final glance at you before I stole out.

I cried silent tears on the train all the way back.

It didn’t get easier …

You were on the bed again when I arrived. You were tired, you said.

I walked into that room, with the photos of my sister and me when we were students and the one of Mum in Austria with you. They were out of place there; I closed my eyes and saw them in your bedroom at home, the light flooding in.

It took me a while to persuade you to sit up next to me, to watch Andre Rieu with me, to smile, to talk. You, my totally extrovert father, were subdued in a way that you never had been before.

‘Where’s your mother?’ you asked. ‘Is she coming back shortly’.

‘Everything’s fine, Dad; Mum’s fine’, I said, evading the question.

I think I knew then that I had to get you back to the previous home you had been in for respite purposes. It wasn’t that this home was inadequate, it just obviously wasn’t right for you.

You were lying, propped on a pillow and barely opened your eyes the next time I visited. Dad, I’m losing you, and this isn’t just about the dementia, I thought. Nothing I did could entice you out of that bed and how I tried.

You were fast asleep when I left.

My heart always sank as I entered the building and went up the stairs and down the long passage to your room, with your name on the door and a picture of a cricketer … cricket your passion in life.

I entered always to find you languishing on a chair or lying on the bed.

And each time, all I could think … I will never desert you, Dad.

My Dad

This might be your last night at home

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I came across this the other day, tucked away in a notebook:

Sitting across from you tonight, all those other times flit by … watching political debates with you; documentaries about the great composers; the New Year’s day concert from Vienna, which I hated until I hit middle age! And tonight, especially, watching All Creatures Great and Small, I remember youth and possibilities and Sunday evenings with another cast of characters and the car splashing through water as the credits rolled.

I think of all the nights in this house where I grew up, Dad. One of my earliest memories is you carrying me up the stairs and we’re counting them in German … eins, zwei, drei und so weiter … and I’m five years old.

Where did that time go?

So many years spent away, living my life, but always returning to you two, Mum and Dad, and the hills of home.

And now, three years here, you’re surprised every morning when you see me Dad, and your face fills with joy:

‘How long are you back for, this time?’ you ask.

Tonight, you were on particularly good form, so happy to be here with us … your ‘girls!’

I tucked you up in bed and felt so protective, probably the way you felt about me when I was a child:

‘Night, night, love you Dad, never forget’.

‘Love you too, my daughter … you never forget,’ you replied.

You have always been such a benign, positive, life-affirming presence in my life, with your openness to others and to diverse cultures; with your dry sense of humour and your love of the absurd.

Tonight might be your last night here, Dad, in this house with its happy childhood memories, and it hurts.

Light

It goes against the grain … but where I don’t believe that honesty is the best policy

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‘I’m just going to ring my mother,’ you said.
‘But Dad,’ I responded, ‘Gran died a long time ago’.

You looked shocked and sad.
‘No,’ you said.

The next morning the conversation was a repeat of what had been said the day before.

You forgot as quickly as I responded, but it was obvious that although you had forgotten what was actually said, the accompanying worry and sadness remained.

I don’t know why it hadn’t dawned on me earlier how cruel my response was; my only excuses are that I hadn’t wanted to mislead and that I hadn’t been back with my parents long and was relatively new to the day-to-day realities of dementia.

By the second day, I had realised that I had to go along with whatever you said, Dad.

‘I’m just going to ring my mother,‘ you said, ‘but what’s her number?’

‘Try later,’ Dad, ‘I don’t think Gran’s there now’.

‘Oh, right,’ was your only response.

Then you forgot, and you only occasionally ask now.

And, I suppose I mention this as a precursor to a conversation I recently had with a social worker (Autumn 2023). In view of my Mum’s health and the realisation that I would now need to leave more often for work, we had realised that Dad would have to go into a home, and the realisation hurt.

So, I was already raw when discussing the situation. Strangely, it wasn’t talk of care homes that set me off, it was when she said:

‘How does your Dad feel about that?’

I could feel my stress levels rising.

‘I can’t phrase it like that to Dad,’ I said. ‘That would just be cruel. He no longer has the cognitive ability to understand. It would just cause him needless upset’.

Already, I could imagine his hurt face looking at Mum and me, the worry in his eyes at our desertion of him, my Dad who loved my Mum, my sister and me above all else.

I felt distraught when I put down the phone.

In the beginning, I didn’t use support lines at all, but I had recently started to reach out to the Alzheimer Society’s dementia support line and that was my go-to now.

‘I can’t do it,’ I heard myself saying, ‘I can’t have an honest conversation with Dad; he just wouldn’t understand, and it would cause him so much pain, but I feel so bad about misleading him’.

It was such a relief when she reiterated what I already thought: that Dad would forget the conversation but probably be left with the feelings of sadness or worry that would accompany it. The conversation with her helped to allay the feelings of guilt, and it crystallised my approach.

That woman was a lifeline to me. She understood; she understood my guilt at lying but that honesty would be cruel where cognitive function didn’t exist anymore. There was no need to explain to her how upset I was about the thought of causing Dad severe distress should I tell him that he was going into care for good.

She said to me that if the next conversation upset me as much I should just ring again. Luckily, when I saw the social worker face-to-face and explained, she totally understood, but knowing that lifeline was there has made all the difference.

Early Morning

Late night, early morning …

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It’s 12:45 am when I head to bed myself and the light is on in your room. I open the door to find you in Mum’s wardrobe.

‘Hi Dad, what are you doing?’ I ask.

‘I’m getting up’.

‘But, Dad, it’s the middle of the night’.

‘No, it’s not,’ you reply.

I turn off the light and open the curtain to pitch black outside.

‘Look Dad. Does that look like day time?’

‘No.’ you say.

‘Can you go back to bed, then?’

‘Alright’…

I tuck you in again.

1:00 am

I hear the bed creaking and you’re on your feet when I enter the room.

‘Are you alright Dad?’

‘Yes, I just need socks’.

‘Why Dad?’

You look exasperated.

‘I’m getting up’.

‘No Dad not yet,’ I say.

‘Yes, I am’. You’re adamant.

‘But it’s dark outside Dad’.

‘No, it’s not’.
I switch the light off and open the curtains again.

‘Oh, so do I need to leave my legs like this?’ you ask, looking dolefully at your bare feet.

‘Yes,’ I respond. ‘Don’t you want to go back to bed, Dad?’

‘Ok’

I tuck you into bed again.

1:10 am

I’m wide awake, listening out for your footsteps.

I hear the bed creak and the light switch flick.

I get up and open your door. ‘Dad, what are you doing?’ I ask.

‘I’m getting up,’ you respond.

‘But, Dad, it’s the middle of the night, you don’t want to get up in the middle of the night, do you?’

‘It’s not,’ you say.

‘Look Dad,’ I draw the curtains again.

You look out.

‘It’s dark’.

‘Would you like to go to sleep, then, Dad?’

‘Alright’.

I tuck you into bed again.

1:30 am

I hear creaking in your room.

You are sitting on the end of your bed yawning.

‘Dad, don’t you want to go to sleep?’ I ask.

‘No, I’m getting up’.

‘Why, Dad?’
You look at me as though I’ve lost the plot.

‘I want to,’ you respond.

‘Really, Dad?… but look how dark it is outside. Do you really want to get up?’

‘Oh’ you say, looking puzzled.

You remain seated.

‘So what do you want to do, Dad?’

You look at me as though I’m quite strange.

‘I’m going to bed; it’s night,’ you say.

I tuck you in again.

4:30 am

I hear my name being called and knocking on the bathroom door.

I get up.

‘Oh, you’re there,’ you say.

‘Are you alright, Dad?’ 

‘I need a tinkle,’ you say and close the door.

I wait.

5 minutes later and you’re still in there.

‘Dad, are you coming out soon?’

I hear the washing of hands and then you open the door.

You point to the floor.

‘Don’t worry about that Dad; I’ll clear it up’.

There’s urine everywhere.

5:00 am

I awaken from a light sleep to tapping on the door …

I’m so very tired and another day’s work looms.

Sunshine through the trees (1)

Just nobody else mention commodes!

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I needed to get out on my return from the hospital, to alleviate the frustration and find peace in nature.

The conversation I’d had earlier still baffled me!

‘You could use a commode’, the nurse had said, ‘when he’s discharged’.

Funny how I had felt my blood pressure rising at the very word. How many times had I been told that already since I’d been back with my parents, supporting Mum with Dad.

No, I can’t use a bloody commode. Have you any idea what it’s like in the middle of the night? Have you been up every time your father goes to the loo, wiping up the streams of urine that reach the bathroom door? But at least he still knows to go to the bathroom, and I’m thankful for that.

‘It wouldn’t work’, I had said. ‘Dad is not used to using a commode. I can’t introduce something he’s not used to. The bedroom would stink of urine’.

‘He would sit on it’, had been her response.

Yes, right. Dad is used to standing and he’s got dementia, so he’ll either be confused or stubbornly decide sitting is not something he wants to do … And, it will be the middle of the night, just to add to the confusion.

I was still thinking about the chaos that would ensue.

The nurse had looked at me as though I was just another awkward relative, not prepared to find a solution.

And I had looked at her and thought just what I would like to do with a commode at that moment.

And I didn’t get it. I didn’t get how people, who must have some dealings with dementia, could even suggest commodes and Zimmer frames and all those other things Dad was not used to doing / using. (Don’t get me wrong, I was/am so grateful to the NHS, especially for all the help we had had during lockdown from consultants, paramedics, and the district nurses). But to get back to my point, Dad continued to do what he had always done, mostly as an inbuilt reflex. I could have explained till I was blue in the face, and he still wouldn’t have got it. That wasn’t his fault.

‘My Dad has dementia’. How many times did I need to say it in response to an idea mooted that would have worked under any other circumstances?

Please, stop telling me what my Dad can or can’t do; I already know and I’m sick of hearing.

 

On the stairs (1)

Escape

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It’s early morning and I’m half asleep when I meet Dad on the stairs.

He raises his finger to his lips to signal that I shouldn’t speak.

Then he whispers:
‘When are we getting out of this place?’

‘Dad, where do you think we are’, I ask?

‘I don’t know’, he says.

‘Don’t worry, Dad, we’re at home’, I respond.

‘Oh’, he says, looking around in surprise and still not quite comprehending where home is.

Then, he laughs, and old Dad is back.

‘Of course we are, he says’, shaking his head in astonishment that he could have thought otherwise.

Sometimes, he asks me if he needs to go to school; he frequently tells me that his schoolmasters will wonder why he’s late … Dad’s never late … unlike his elder daughter!

Then, there are those days he tells me that he will see Peter later; that’s my Uncle Peter who he’s forgotten moved to Australia years ago – and is now, sadly, no longer with us – and he talks about seeing his parents and my Aunty Jen and in his head he’s at home with them.

And, there are mornings, like this one, where he quickly becomes himself again, and I’m his daughter, and he’s in the house where he has lived all his married life with Mum.

spain resized

‘Karen, Do a Pedro’: Dad’s constant refrain during lockdown

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Whenever Dad doesn’t want to comply with one of my requests, I am told to ‘do a Pedro’. When he finally forgets Pedro, I’ll know things are really bad.

My parents spent many a rainy British winter month in Spain. Pedro owned their favourite bar; he was a great guy who loved Dad and was perpetually having problems with ‘your lot’, in other words the English. Of what nature, I’m not quite sure, but I can imagine! Some English visitors to Spain are not always a credit to our nation!

My father, a man who very rarely swears, insisted Pedro take a no-nonsense approach and just tell them to ‘bugger off’. Whether Pedro took this on board, I don’t know, but from this point onwards, he always called Dad ‘Mr B off’ and so the swearword itself morphed into ‘Do a Pedro’ every time Dad decided that he didn’t want to take any notice of us!

Let’s return to the present for a moment!

Asking Dad if he wouldn’t mind:

• getting up so I can dress him;
• standing well over the toilet;
• going to bed before midnight so that I can help him undress and put him to bed without feeling knackered the next morning as my working day begins …

… all elicit a ‘Karen, do a Pedro’, said with a broad smile on his face.

It’s something that he’s so far held on to.

When ‘Karen, do a Pedro’ goes, we will have reached another stage.

Sunset (1)

I’m still here if you look hard enough

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It must have been at the end of the first lockdown when, whilst talking to an acquaintance, an older lady passed us, her husband trailing behind, not looking particularly alert.

The person I was speaking to said ‘hello’, before turning back to me:

‘He’s got dementia’, she said. ‘He’s not with it at all. I don’t know how she does it, such a burden on her’.

She didn’t mean any harm; she’s a really pleasant person, but the comment disturbed me: I didn’t want my Dad to be spoken of the same way to some other chance acquaintance that he and my Mum would undoubtedly know.

I followed the couple into the supermarket.

And, I wouldn’t have thought any more of it – other than feeling a little sadness for the man I had just seen and for knowing that my Dad’s name would be bandied about in the same way – had I not happened upon the couple again at the till.

There was a woman in front of them with lots of shopping, flustered, looking around for something to place her purchases in. It was the man who was apparently such a ‘burden’ who immediately stepped forward, bags in hand.

‘Here you are’, he said pleasantly.

And there, for all to see, was the man he had been and was still.

Over the bridge Settle Station (1)

March 2020 – returning home

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My workplace was ahead of the curve when it came to remote working.

I remember returning to my parents back in March 2020. On alighting the train, I crossed the bridge, the hills rising to greet me as they always had.

I’d decided to travel back with some trepidation. I’d been commuting to London in the days prior to going and was scared that I might do harm to two very vulnerable people: my Dad has dementia, whilst Mum has multiple, physical health problems.

I knew I had done the right thing as soon as I walked through the door to encounter a very cheerful father and a worn-out looking Mum who, of course, had never commented on the extent to which she was feeling the strain of being the one racing around after Dad, for his medication, his meals and fulfilling his needs generally. I remember thinking, what about your needs Mum?

At that time, Mum could still drive and walk around town. Now, thinking about the situation then, a mere four years later, I’m shocked at such a rapid decline, but she has never been in robust health.

And, why am I returning to the beginning of lockdown now? Because I’ve just come across jottings in my diaries of some of the things Dad said to me then and through the intervening years. I suppose I wrote little snippets down because I was fearful of the ravages of dementia that time would bring.

Dad’s comments take me back and bring my parents’ rapid decline into sharp focus. Dad doesn’t have the capacity to comment in this way now. He knows who we are, but he’s losing vocabulary daily.

And, thinking of Dad then and now inevitably leads to Mum, who has long since ceased to drive and can’t even walk round the corner to the post box, never mind rush about town. That’s the same Mum, who I find most mornings, sitting on the end of her bed, head in lap, because she’s fallen asleep before getting back into bed.

So, I sit and read and am taken back to a short time ago, which feels like forever:

April 2020
Dad today, comes and hugs me.
‘Thanks my old mate’, he says.

—

May 2020
Dad to me: ‘You could break my heart’.
‘Why Dad?’
‘Because I love you so much’.

—

March 2021
Dad about Mum: ‘I’ve loved her for a number of years (sixty five at that point!) and I still do’.
Me: ‘And she loves you, don’t you Mum’.
Mum: ‘God, I do’.

I’ve jotted down ‘as if surprised’ after Mum’s comment, and that brings a smile to my face now!

—

June 2021
Dad to me: ‘I have to tell you, your Mum and I have had a do, and she’s gone’.
Me: ‘Where Dad? You mean she’s left you?’
Dad: ‘Yes’
Me: ‘But, she’s upstairs, Dad’.

Dad goes upstairs and encounters Mum.

‘Never leave me Mam’.
Mum: ‘I won’t, you daft bat’.
Dad to me: ‘Don’t forget that I love your mother’.

—

April 2022
Dad tells me that he loves me, my sister and Mum dearly.

He asks me to let Mum know: ‘Mention that to her the next time you see her’.
‘You’ll be seeing her too, Dad’.
‘Will I?’
‘Yes, she hasn’t deserted you’.
Dad: ‘I’m a lucky man; I’ve got a great family’.
Me: ‘And, Tracey and I are lucky; we’ve got a great Mum and Dad’.

—

Nov 2022
Me: ‘I love you, Dad, never forget’.
Dad: ‘I won’t, my daughter; you’re a darling’.
Me: ‘You are, too, Dad’.

—

Dec 2022
Dad to Mum:
‘The first time I saw you was the best day of my life’.

—

And my Dad, Summer 2023, some months before we had to place him into care permanently, the entry which really breaks my heart:

‘My girls, never leave me. I think the world of you’.
Me: ‘Tracey, Mum and I think the world of you, Dad. We love you’.
Dad: ‘And I love all my girls’.

—

So, 2020 is my starting point for blogs about life here with Mum and Dad, and I’ll add more over the coming weeks, written then and through the years since.

To those out there watching your parents fade, I know how hard it is.
To those out there losing your mother, father, husband, wife, brother, sister to dementia, I understand.

I’m with you on this journey.