10 Things I Learned When My Father Had Dementia

Dementia

Article by 

Fanny Johnstone


A
fter a stroke at 81, my clever, funny, obstinate father developed vascular dementia in November 2011. We swiftly came to understand that someone with dementia has difficulty with planning and understanding things, from breakfast choices to bigger life events. Changes to mood are inevitable, because they feel disoriented, confused and vulnerable. Balance can be challenging; memory and language fade – eventually, we were told, he would lose the ability to walk or talk …. It was unimaginable, but it happened.

My mother cared for him on her own heroically for about 18 months before my husband suggested that we move to Cornwall to help her. My dad’s prognosis was not good. He wasn’t expected to live for more than a couple of years – and he didn’t. I had 18 months with him and mum, going back and forth from my father’s former painting studio in the garden, where my husband, daughter and I sort of camped out. My brother came home regularly, too. This is what I learned when my father had dementia.

Writing helps

I kept a diary every day when my dad had dementia. I grieved so hard during and after his death that I wrote endlessly about that time. It was a way to hold on to him, to process things, to scream and cry on to a silent page so that my family didn’t have to cope with yet more tears. But it was also a chance to record the sweeter, lighter, funnier things about it, because our one piece of luck was that the dementia softened my father. He became much more emotionally available and was able to laugh a lot. I don’t know if this is the case for everyone, but, despite the occasional bout of anger or frustration, my dad yielded rather than fought.

We are surrounded by carers

Until my father had dementia, I had been lucky enough to not have to acknowledge that there is a secret world of carers (professional and unpaid) dealing with difficult and stressful situations every day. We met some amazing care workers who came to help bathe my dad, or to attend to his various medical needs.

Friends and neighbours came out of the woodwork, too. Often, these people had cared for their parents when they were children or teenagers, refusing or unable to send them to a care home and so doing everything for them for years and years: the bed baths, the potty changing, finding them when they went missing, amusing them, sorting their admin, dealing with their anger. Sometimes, without even asking, these people hugged my mother and me. They knew what it was like.

It can be explosively funny

Sometimes, my dad had to mime things, because his language abilities came and went, meaning he could no longer explain what he wanted. One day, after pointing to his bed, he mimed what seemed to be an impression of a rabbit, paws to his mouth, his beady eyes and prawny eyebrows peeping over the top of an invisible line. I didn’t know what he was talking about, but it all seemed very serious.

He got more and more frustrated while I tried very hard to hide the terrible laughter that comes when you know that the one thing you absolutely must not do is laugh. Then, I realised the paws were holding up an imaginary blanket. Eventually, I understood that what he wanted, when we made the bed every morning, was for the top edge of the blanket to stop near his nose.

Then there was the time we put dozens of candles on his birthday cake and came into his bedroom singing happy birthday, but the cake nearly set him on fire, because he didn’t have enough puff to blow the candles out. He was crying with laughter and so were we. It was a close shave.

You have to learn to adapt

I have always been quick, impatient, careless – “slapdash”, as he called me in my teens. But this slapdash nature was tamed by the demands of my new boss, dementia. My dad had been a huge reader and thinker, but the stroke had killed his ability to read; his intelligence was drowning in a sea of confusion and slowness of thought. Doing anything fast was not possible around him anymore, so my brother and I had to learn to slow down, talk clearly, enunciate well, look him in the eye when we were talking and keep things to the point, so that he could understand. We had to enter the room slowly, meaningfully, heralded by an “ooh-hoo” so that he knew we were coming. So in a weird way the dementia required a new level of respect, and when he responded, it felt strangely good to give it.

The tiniest details can make a difference

One of the great daily demands when my dad had dementia was knowing what to talk to him about. We’d take it in turns to go in and sit with him in the morning or evening, to help dispel his boredom and keep him company. This could fill us with panic, because not only was he struggling to speak, meaning that two-way conversation was difficult, but we felt the acute responsibility of wanting and needing to amuse him. Big stories about politics were now out because he couldn’t really remember who anyone was or follow a storyline for long. It had to be more immediate things that happened around the house, such as the way I’d accidentally saved a baby shrew that the cat had brought in because it ran up my trouser leg while I was kneeling on the floor. These were my favourite moments with him – knowing that a story I was about to tell was going to get his interest: his eyebrows would start twitching, his eyes would twinkle, the giggles revving up like a big geyser and his shoulders heaving with amusement. Wonderful.

You have to be organised

We never knew if my father would sleep all day, or if we’d find him wandering around, or if he’d need medical attention. So, we made an efficient list, pinned it up on the wall and circulated it to family, so that nothing bureaucratic (car taxes, MOTs, dental appointments) could ambush us while we were dealing with unexpected incidents with my dad. Naturally we already had power of attorney sorted, and a DNR (do not resuscitate) form, meaning that should his heart stop beating, or if he stopped breathing, it had been formally requested that no medical intervention would be given to him by healthcare professionals to try to keep him alive. That bit of paper – bright pink, as I recall – was a strange document to behold, but vital. He was keen to get out of here, that much was clear. If he was given the chance, we didn’t want to stand in his way.

You can forget who you are

When you’re dealing with someone who has dementia, you sometimes (or often) have to deal with something horrid or icky or sad, or all three all at once, and you can lose your sense of self. How has it all come to this and how can this happen to you? But the thing to remember is that you are still that person, and that you’ll come back up to the surface of normal life and logic and laughter one day, despite the grief and the horrid things you’re currently having to deal with. All of this unhappiness and inconvenience will be stuffed into the weird, boggy aquarium that is dealing with someone with dementia. You’re still there, and the great thing is that the kindness of friends, and of strangers too, will haul you out of that aquarium, back into the light. By the scruff of your neck sometimes, sure. But out.

Everyone needs a break

Although, as a family, we tried to establish some sort of routine, the days and pressures were unpredictable and so, inevitably, were my own moods. I drank too much. Smoked too many roll-ups. Probably ate too much cake. But I also ran a lot, and escaped to London to get away from it all, and am fortunate to have an incredibly supportive husband. I was lucky. If you don’t have that then ask for help, wherever and however you can get it.

The law needs to change

The last few months of my father’s life were so hard. To see him fading away with dementia was brutal. We dreamed of a million ways to help him out of here with his dignity intact. What I wanted for him was for it to be a normal Tuesday morning, for him to have a delicious huge breakfast, to be in bed in his room with all the pets around. For us to have said fond and loving goodbyes, as though he was just going away for the weekend, and then for him to take a pill, have a bite of his favourite shortbread, a slurp of tea to wash it down, and then gently fade away, no fuss, just falling asleep in his own bed to the sound of the birds chirping away outside.

What happened instead was that he became unsteady on his feet and was too large for us to pick up when he had one of his many falls – so he had to go into a home for the last nine weeks, a place full of bleeping alarms, strangers and rules and unfamiliarity and suffocating heat, which was awful because we are a fresh-air, open-windows kind of a family.

The staff at the home did the best they could, but putting him in there was horrendous. The thought of it instantly makes me cry, and it is hard for me to make myself recall any of that time as it is so filled with sadness. His last words to me were “in prison” – one of the worst moments of my life. As a result, I am a massive advocate for legalising assisted dying. Handled right, it could take so much pressure off so many people, and allow for much, much happier endings.

It can be a profound and valuable experience

I was able to care for my dad when he had dementia, love him, indulge him and show affection in ways that would have been impossible for me to imagine when I was young. It gave me a sense of self-worth and respect that I think had been missing for much of my life. My suspicion that he had been disappointed with me eroded during that time. I think he saw qualities in me that he hadn’t known were there. I think I did too. And as a result I’ve had a bit more faith in myself since. I don’t think it’s too strong to say that the experience redeemed me in my own eyes. I had chased fun and freedom for much of my life at the expense of responsibility and a steady career, but here I faced up to life, and grew up, I think.

A few weeks after his death, my best friend, who had known my father since childhood, invited me for a drink. I hadn’t seen her in a while. She took me to a beautiful bar. When the waiter had placed our first drinks in front of us, she said: “So how was it then?” Meaning all of it – the last 18 months, and my father’s death. My exact words – which surprised us both a lot – were: “I wouldn’t have missed it for the world.”

She was incredulous but it was true. Nearly a decade later I stand by that remark. If I can be proud of anything in my life, it’s helping my mother look after my dad during that 18 months. It was a rite of passage, a battle, something painful to endure and to survive and recover from. But I did it.

Fanny Johnstone is a writer and journalist.

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