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The journey into dementia

The story that has to be told before the words disappear.

Little by little, Jannicke (54) is losing herself,

but unlike many people with Alzheimer’s, she is still able to tell us about her experience.

Dagbladet’s journalist and photographer have followed her for an entire year.

Here is their report from the inside of the disease that affects 100,000 Norwegians.

The journey into dementia

This story has to be told now. The woman it concerns will lose the ability to tell it as her brain tissue dies, leaving empty spaces inside her head. She can see it in her MRI scans, inside her own brain, how the disease is laying waste to area after area. Making it so she can’t remember what happened yesterday, how to read the watch on her wrist or how to get to and from the grocery store on her own.

image: The journey into dementia

She doesn’t always remember us either, the journalist and photographer following her for an entire year. Before we meet, she has to be told who we are and what will happen. She has pictures of us on her phone that she can look at so she won’t feel like she’s meeting us for the first time over and over again.

Words will start failing her soon as well. She knows this. They’ve already started to elude her, individually and as complete sentences. As if an invisible hand is erasing everything she’s written on a whiteboard in the middle of a lecture. She sometimes loses the thread. Draws a blank. The doctor checks how she is doing at regular intervals. For her it’s like sitting an exam. She dreads it for weeks. Fears ‘failing on half a brain’, as she puts it. No one recovers from the disease she has. No one gets better. The best she can hope for is finding out she’s not got that much worse. Yet.

Watch a typically confusing situation from Jannicke’s everyday life:

Have you got your glasses? They’re not in the bathroom, as far as I can see, and… Did you find them? No. You were looking for your glasses! What are we looking for now? We’re looking for your glasses, Jannicke. Yes, and I haven’t found them. No, but you… how about I go and look… What are you looking for? My iPhone’s here, but that’s not what I need, is it? No, you’re looking for your glasses or you won’t be able to read. This is just unbelievable. Where are they then? You must have had them on when you were out shopping. Surely you did… Maybe they were hanging here? Well, where have you been since then? There they are! Whew! That’s just how it is now. Yes, that’s just how it is.

But right now there is a window of opportunity as she gradually loses herself to the disease that between 80,000 and 100,000 Norwegians suffer from and 350,000 live with as next of kin. While she is still able to use her words, she has an important story to tell. She wants to take us into a mysterious landscape where few journalists have previously set foot.

On assignment into dementia.

Chapter 1

How did they find out that there was something wrong with Jannicke?

Jannicke Granrud (54) can’t remember when she started to forget. On the outside, she is one of those women people turn to look at because she’s so well put together. She grew up in Bærum and now lives in a posh area on the west side of Oslo. Always flawlessly made up, well dressed, French manicure, clinking jewellery. Lip gloss. And the most beautiful accessory of all: a big, white smile.

‘I’ve been walking around thinking my memory is excellent,’ Jannicke says. ‘I can still remember the names of my parents’ colleagues from when I was little. That type of thing.’

The brain of an adult human is made up of 100 billion nerve cells. There are 100,000,000,000,000 connections – synapses – between these. It is in this intricate web that chemical and electrical charges fly around. Becoming thoughts, memories and emotions.

Most people who get dementia are affected by the subcategory called Alzheimer’s. We used to just say they were ‘senile’, but all that really means is old. Dementia is not a natural part of growing old. Dementia is a condition. It strikes in what makes you who you are. In your brain tissue. It starts to atrophy. Your brain shrinks. It can even happen if you’re relatively young. Researchers think that the disease might take root long before the symptoms show themselves. Ten years before, maybe more.

Jannicke has lived with Hildegunn Fredheim (58) for 16 years. Something may have already started to happen inside her when they met.

‘We met when we were studying to become counsellors, in the middle of our lives. I remember Jannicke was standing in front of a coffee machine one of the first times we spoke. It said “insert ten kroner”. She just couldn’t work out how that machine worked. So I helped her, thinking she was probably just a bit awkward. It’s only now, many years later, that I’ve started wondering about that episode,’ Hildegunn says.

Jannicke looks at Hildegunn and smiles. She calls her ‘the Logistics Manager’. Hildegunn manages her everyday life now. She’s the one who has to help us work out the chronology. When did things really start going downhill?

‘Five years ago. You started forgetting when you had made plans with your children. You missed your son’s concert. It was hard. And the children were upset because you didn’t seem to be paying attention to what they told you. You asked about things again and again. And you got notes of concern at work,’ Hildegunn says.

‘Yes. That was horrible.’

Watch Jannicke in her element, as she used to be:

The first time I met Jannicke I remember thinking I’ve never met anyone like this before. Nice clothes, always well groomed. And lots of energy. Laughter, silliness. You wanted to be close to her. And I wasn’t the only one who wanted to be close to Jannicke. A lot of people did. I sometimes thought that God had split a soul in two, putting one half up in Holmenkollen and one in Ski, and then we finally found each other. Maybe I should have realised sooner.

Both Jannicke and Hildegunn are speaking coaches and therapists. Speaking has been a key part of their profession, in teaching and therapy. Now Jannicke has to concentrate to compose complete sentences while telling her story. To find the words, one by one, from the rich vocabulary she used to take for granted.

‘I’d be standing in front of a class and suddenly just be like…’ she says, describing the strange feeling of drawing a blank, almost like fainting except she was still standing and looked fine from the outside.

image: The journey into dementia

‘The students were starting to wonder. I realise that. I couldn’t remember instructions and sometimes forgot entire days, without being particularly stressed, without being able to explain it. I also had another job at a nursery. When the parents came to collect their children in the afternoon, they asked me what they’d done and eaten and I couldn’t think what to say. I couldn’t even remember the children’s names.’

Hildegunn started to wonder as well. Well, more than that. She was irritated. Couldn’t Jannicke be bothered to care? Did she just not give a toss anymore?

‘Jannicke would go to the grocery store and come home with the same things we’d just bought. She would look at me and nod when I asked her about something, and then do the exact opposite. Of course I was frustrated. I couldn’t understand why she didn’t understand.’

Jannicke suddenly wasn’t sure how to get to the cabin they’d driven to a hundred times before. She would wake up in the middle of the night thinking she’d overslept, that it was morning and that she needed to get up and go to work. Coffee machines weren’t the only thing she had trouble using anymore. She puzzled over the TV, the washing machine, the kettle.

What is harmless, everyday lethargy – and what might constitute the first signs of serious illness? When should the alarm bells start ringing? Everyone forgets plans sometimes. Everyone occasionally struggles with a piece of technical equipment. Doesn’t remember a name immediately, mixes up words. Jannicke definitely isn’t the only person to have ever gone to the shop and bought a new bottle of washing-up liquid even though there’s an unopened bottle at home on the kitchen counter.

But all this at once?

‘I had my suspicions long before she was sent for investigation,’ Hildegunn says.

‘I said to some of our friends: “there’s something very wrong with Jannicke”.’

Chapter 2

Who were Dr Alois Alzheimer and his patient, Auguste Deter?

The journey into Jannicke’s condition also sends us on another journey, back in time. To Frankfurt in Germany, in 1901, where a woman Jannicke’s age is sitting on a hospital bed. She is in an even worse condition. Her hair has been pulled into a messy ponytail. She is wearing a white nightgown and looks dejected. ‘Auguste Deter, 51 years old,’ notes the doctor examining her. Her records still exist, thirty-two yellowed pages in a blue folder. In elegant handwriting, he logs the remarkable conversation he has with the patient:

‘What is your name?’

‘Auguste.’

‘Surname?’

‘Auguste.’

‘What is your husband’s name?’

‘Auguste… I think.’ (looks confused)

‘Your husband?’

‘Oh, my husband.’

‘Are you married?’

‘To Auguste.’

Auguste Deter, the first recorded case of Alzheimer’s
Auguste Deter, the first recorded case of Alzheimer’s Vis mer

The doctor’s name is Alois Alzheimer. Auguste’s problems have been ongoing for several years. She has trouble sleeping, he notes. She is confused, forgetful, frightened. And she is jealous – she has decided her husband is being unfaithful. She is only getting worse. Auguste is unable to say what year it is. She is unable to write her own name. Sometimes she starts screaming, yelling that someone wants to kill her. Doctor Alzheimer logs conversations they have at lunchtime as well. One day she has pork and cauliflower on her plate.

‘What are you eating?’

‘Spinach.’

‘What are you doing?’

‘Potatoes.’

The German doctor thinks all these are symptoms. But of what? In 1901, no one has any idea what Auguste is suffering from. Up until that point, the assumption has been that the human brain wears out over the course of a lifetime. That is why, it is thought, that elderly people get confused. It is part of the natural ageing process, just like getting wrinkles and grey hair. But how can this patient, who is only middle-aged, be suffering from ‘old age’?

In the handwritten notes in the yellowed records, there is one sentence that stands out. It is a note of Auguste herself voicing something significant.

Ich habe mich verloren,’ she says.

She repeats these words again and again. ‘I’ve lost myself.’

When Auguste dies five years later, a medical breakthrough is made:

Doctor Alzheimer cuts into her head. Into what will immortalise him when he lends his name to a completely new diagnosis. Because Auguste hadn’t been suffering from normal old age, she had been affected by a specific illness. Her many and rare symptoms had a demonstrable physical cause. The doctor holds her brain in his hands and realises in astonishment that it has shrunk to half the size of what is normal. He then cuts thin slices of the brain tissue and studies it under a microscope. He discovers a kind of plaque that has clustered between the brain cells and prohibited them from communicating with each other. And he finds more. In the cells themselves. A kind of tangle. Microscopic threads have become entangled inside the brain cells and strangled them from within. Stifling Auguste’s memories and language, her ability to form sensory impressions and think, reflect – indeed, laying waste to large parts of what made her who she was.

Even though Auguste is already dead at this point, she becomes the first patient in history to receive the new diagnosis: Alzheimer’s disease.

Hildegunn is on a business trip to Sweden when her phone rings. It’s the doctor. They’ve found something in the samples taken from Jannicke’s cerebrospinal fluid, he says. An elevated value that shouldn’t be there.

‘It was something very specific. Something indicative of plaques in her brain, I think he said.’

Chapter 3

An alien with black eyes

Three different tests are carried out to diagnose Alzheimer’s – the most common form of dementia. First, a cognitive test of the memory and ability to orientate oneself. Using a pen and paper, the patient answers questions that are simple for those who are healthy, but that can be confusing if there is something wrong with the most important and complicated organ in your body.

‘What year is it?’

‘What season is it?’

‘What floor are we on?’

The doctor conducting the test reads out simple, random words that the patient has to try to remember later. For example: rabbit, chair, juice.

It is then time to draw hands on circles representing clock faces. What does the clock look like when it is quarter to four? Twenty past one? And what were the three words, again, the ones that were just read out?

The second test is called a lumbar puncture. The doctor uses a long needle to extract a clear fluid from the patient’s spine. Cerebrospinal fluid. It is this fluid that our brains are suspended in, up in our skulls, and that flows around our spinal marrow down the length of our spines. If the fluid contains suspicious levels of certain proteins, which may indicate the presence of plaques and tangles in the brain, the third test is carried out: and into the tube the patient goes. First for an MRI. Then for a PET scan with a radioactive substance injected into their bloodstream.

The brain is photographed from all angles. In black and white and in psychedelic colours.

This happens in 2016: they already know that Jannicke has scored poorly in the words and clock faces test. She is forgetful. But how bad is it? Not remembering the words ‘rabbit’ and ‘chair’ doesn’t necessarily mean she’s sick, does it? But then there are the plaques they have found. Now she has inserted into big machines at the hospital and scanned like a document in an office photocopier.

Out come the MRI and PET versions of Jannicke.

She and Hildegunn are sitting in a doctor’s office, waiting for a diagnosis. But there has been a misunderstanding. The neurologist hasn’t received the MRI and PET results yet. He calls a colleague while they wait.

The clock on the wall ticks incessantly. There is linoleum on the floor and colourful curtains frame the windows. The doctor listens to the person on the other end of the phone. He nods.

And Hildegunn can still hear his voice, loud and clear, as he says:

‘Okay. So there’s no doubt?’

The world turns upside down. The last three or four years suddenly make sense. The diagnosis means that Hildegunn goes from being irritated with Jannicke to understanding her girlfriend in another way. She isn’t uncooperative and disinterested. She’s actually unwell.

What about Jannicke herself? After all, it’s her brain. What did she make of the diagnosis?

‘I think I just saw Hildegunn’s reaction and thought “well, that’s probably what it is then”,’ she says calmly.

The MRI scans of Jannicke’s brain look like an alien. A terrifying creature with black holes for eyes. It stares doggedly ahead. When the doctor scrolls with the mouse, the different parts of the brain are displayed, a journey of discovery inside the skull. From her forehead backwards, inwards, past her eyes, nose, mouth, tongue and sinuses, all the way to her temporal lobes.

Let’s stop scrolling there. As her ears come into view on either side of her head.

We are at the heart of the brain. At the heart of the problem.

There, slightly to the left in the MRI scan, the disease is visible: a round, black spot. A similar spot can be seen on the right side as well. In the hippocampus. In healthy people, this sausage-shaped structure measures three to four centimetres. But Jannicke’s hippocampus has shrunk. It is surrounded by empty spaces where there ought to be brain cells, the ones that remember appointments and how a coffee machine works. The first thing that goes when you get Alzheimer’s is often your ability to retain new memories. Your memory becomes like a tape player with a defective record button. It becomes difficult to make new recordings, but you can still play old tapes. For a while, at least.

Chapter 4

The love story

When Jannicke was diagnosed, she was 51 years old and one of the youngest people in Norway to be diagnosed with Alzheimer’s. From that moment, everything changed. The way the couple think. About Jannicke. About their life together. About the future.

Fifteen years earlier, they had both gone to therapy in an attempt to stop liking each other. They met while studying. They were both married with spouses and children. But the therapy didn’t work. Hildegunn had never met anyone as vibrant as Jannicke before. A classy west side lady who was cooler and more rock n roll than you might think. Jannicke attracted people like a magnet. Everyone liked being close to her. She was the life and soul of every party, dancing, laughing and having fun. And she was just as enthralling on weekdays, when it was just the two of them.

Jannicke was equally fascinated. By Hildegunn from Ski. The powerful lady who walked around with a rucksack and men’s shoes on.

Get a glimpse of their wedding:

After Jannicke was diagnosed, I decided to take time off and that we should get married. It was such a lovely bouquet, and Jannicke looked so lovely. It was really lovely. And then there was one Valentine’s Day you wrote me a card. Yes. Yes, do you remember what you wrote in the card? Wasn’t it something like whether you wanted to or whether we should get married? [But you said we should get married, that’s what you said.] Mm, but you were the one who wrote the card to me. Yes, it was. Because I’d spoken about it before, and you thought it was a bit… you’d been married, etcetera, and then suddenly there was this card, and then another year passed, and another year, and then you got sick. Mm. Do you remember that? Yes. You got the diagnosis and then you started saying I could just leave you. Yes, because I thought no one has the right to […] something that will only ruin the other person’s life. And then I said I think we should get married instead.

They both left their spouses. It was upsetting and difficult and shameful. But they took up the fight, and were finally able to be together. And that’s when the credits should have rolled. When the violins should have played. That was supposed to be their happily ever after.

‘When we got the diagnosis, I went home and googled like a woman possessed. I had to find something that could help. A pill. A diet. Something,’ Hildegunn says.

‘I was like “We will fix this. We’ll straighten everything out.” I’m used to resolute action. I call experts, I pull levers, make things happen. But for the first time in my life, I couldn’t find a solution.’

That’s when Jannicke said Hildegunn didn’t have to stay with her. She said she would understand if she ended their relationship when they knew how bad it was.

But Hildegunn didn’t break up with her. Instead, she took time off. And after they were married, on the steps outside Oslo Courthouse, she made her wife a solemn promise:

‘If I take your hand and hold it, then you know everything is okay. Even if we can’t talk to each other.’

Alzheimer’s is a fatal disease. No one can predict how long it will take for Jannicke to disappear into her own world. If she is lucky, she might have four or five good years left. If she is unlucky, she might only have two. No one knows.

Friends say that they need to make the most of their life together while they still can. Carpe diem! Okay, sure. But what does that mean? Should they sell their flat and travel the world? Does making the most of their life mean taking the time to drink coffee together in the mornings? Or running the New York marathon? How do you use the time you have left?

‘Hildegunn does her utmost to make me happy. She’s suggested sailing round the world and everything. But I… I don’t want all that. I don’t need to escape from the way things are,’ Jannicke says.

Photo: private.
Photo: private. Vis mer

‘It’s important for me to be able to say that I’m not living a sad life. There is so much good that makes up for what’s difficult. Fortunately none of my friends have given up on me either. I still manage to socialise with people I’ve known for a long time if Hildegunn helps me make plans.’

‘The Logistics Manager’ has to arrange everything. Dinner parties with mutual friends. Reunions with their old study group from Blindern. Choir practice with school friends from her childhood in Bærum.

‘The girls in the choir, yes. We’ve known each other for more than 30 years. I can’t learn new songs, but I remember the old ones. “Ave Maria” is beautiful, and “To live is to love”.’

Jannicke starts humming.

‘If we stick with old songs, I’m fine.’

Chapter 5

What is it like inside Jannicke’s head? Inside dementia?

How does Jannicke herself experience the situations where it seems as if life is out to get her? All these everyday tasks that have suddenly become difficult and confusing?

She doesn’t sleep well. She wakes up in the middle of the night and thinks it’s time to get up. And when it really is morning, she feels like there’s something she’s supposed to do. Something that is going to happen. Something she needs to get to. She just can’t remember what. Maybe it’s not until tomorrow. Or maybe it’s already happened, yesterday perhaps. Hildegunn does her best to make things predictable. She has put a big, backlit digital calendar in the living room, and a paper one as well, to help Jannicke keep track of the days.

Watch Jannicke’s video diary about the demon inside her:

Right now I’m a bit frustrated because I’m never able to sleep for very long, or almost never. And I’ve always been so good at sleeping. But now it’s like there’s a demon in me that stops me from sleeping, for long anyway.

‘Do you remember what it’s like to remember?’

‘Oh, yes. It was a completely different way of being. You don’t burn a single calorie retrieving information. It’s just there. Gathering my thoughts take a lot of effort now.’

Trivial things have become problematic. Consider something as simple as getting dressed. Getting up in the morning and choosing the right clothes for the season.

‘For a while I kept not dressing warmly enough, almost like a child who doesn’t know what’s best for them. I was irritated when Hildegunn said I had to wear my down jacket because it was minus ten. I refused to budge. I said “no, I want to wear my lighter coat”. Stupid things like that,’ Jannicke says.

‘What goes on in your head in moments like that?’

She thinks about it. For a long time.

‘It’s really odd. I mean, I’ve had children. I recognise that protest. And I’m really quite susceptible to the cold, so I don’t know where that came from. But sometimes I just think it would be nicer to wear my lighter coat. In moments like that I’m not thinking sensibly or like an adult. In a way, your partner becomes your mother, from your childhood. And I feel provoked too. No one likes being told what to do. It can make you do silly things.’

She worries about this.

‘I look at people who are sicker than me and some of them are so rude. Always throwing around accusations and being sarcastic. It must make it such a chore for people to come and visit them in the nursing home.’

image: The journey into dementia

She had to stop working a long time ago. It was getting impossible. Indefensible. So was driving. Jannicke herself came to the realisation that she would have to give up her driving licence one day when she drove out of the Granfoss Tunnel.

‘I didn’t know where I was, where I was going or how to get home. So that was that, really, even though I’ve always zipped around in nice cars. I don’t dare use the metro anymore either, because I just get confused and end up in Grønland when I’m supposed to be going to Majorstua. Now I have one of those cards for special transport arrangements.’

She looks for her glasses. Incessantly. We all do things like that, but Jannicke forgets what she’s looking for while she wanders from room to room, here and there, into the bathroom, into the living room, checking the dresser, the window sill, the bag hanging from the chair.

‘Here it is,’ she might say, relieved for a moment at the sight of her phone on the living room table.

Then she pauses.

‘Was it my phone I was looking for?’

‘No, you’re looking for your glasses,’ Hildegunn calls from the kitchen.

Watch Jannicke’s video diary about something she wants to do:

I’m quite nervous right now because I want to prepare or give a kind of small speech to my brother who’s starting… who will be having a party very soon, and of course I really want to contribute with a speech. That’s what we’ve always done. It’s very difficult for me now, and I really feel like Bambi on the ice, and I don’t have the same clear plan, so I feel very stupid and like I can’t, at least not right now, work out the essence of what it is I want to say to Christian.

The grocery store is just around the corner from where they live. Jannicke doesn’t like going alone anymore because she struggles to find her way home again. If she tries and comes back with things, it sometimes turns out she’s forgotten to pay. Hildegunn has to hurry back to the store and get her credit card out.

‘The people around you probably think you’re healthier than you actually are. They don’t see all the organisation that goes into making you seem okay,’ Hildegunn says.

Jannicke tells us about the agitation she feels. A restlessness that niggles at her and that can make her do strange things.

‘I feel very alone inside. A bit like when I was a child. “Will Mum be here soon? When will she pick me up?” I get scared I’ll lose myself. Sometimes I lose, like… time stuff. I feel physical fear. Almost like I’m dreaming. Is this me? Is this my life?’

Hildegunn nods.

‘I notice that. You start wandering around. “My body’s all messed up,” you say.’

Jannicke knows she can make life difficult for the people around her. It can drive you nuts when people wander around aimlessly. But it seems that the agitation inside needs to be expressed outwardly, sooner or later. You end up trembling because you’re terrified, or stressed or in pain. Pretending you’re fine becomes impossible. It’s worse when it’s dark outside.

‘It’s like who I am as a person disappears when I’m home alone in the evenings. What was that creaking noise? Is there someone outside the window looking in?’

image: The journey into dementia

It is in situations like this that Jannicke becomes confused. When there are things she thinks she is supposed to be doing. Like the time she was alone at the cabin while Hildegunn was on a business trip.

Jannicke got it into her head that she needed to shovel snow. She cleared a kind of street around the entire cabin. It took her several hours. When Hildegunn arrived, she showed her what she had done.

‘It was an astounding effort! But it was mad,’ says Hildegunn, who hadn’t mentioned shovelling snow at all.

‘I thought “what is this? Why has she done this?” We didn’t need that much space cleared around the cabin. Do you remember that?’

‘I’d forgotten,’ Jannicke says. ‘But now you mention it…’

Sometimes she also gets dressed up and goes out to parties. At her brother’s, for example. But then there’s no one there. Jannicke listens, almost fascinated, to Hildegunn’s account of one specific incident:

‘You wondered whose birthday it was and what present you should take.’

‘And it was at my brother’s, right? Did I get the wrong day? Was there even a party at all?’ Jannicke asks.

‘There wasn’t a party at all. It was just something you’d got into your head.’

Photo: private.
Photo: private. Vis mer

They still have great moments together. Hildegunn is a font of ideas. So maybe sailing around the world is out, but what about hiring a motor home and driving to Northern Norway? They go to Southern Norway in the summer and to the mountains in the winter. Abroad too, sometimes. This winter, they have just returned from a cruise in the Caribbean. And Jannicke is still so articulate and still looks so fresh that someone who has just met her might not realise that she is unwell. At home in Frogner, the décor is as tasteful as in an interior design magazine. Persian rugs, fire crackling in a tiled stove, crystal chandeliers. And, to top it all off, a lazy black cat lounging on the sofa. Kiwi doesn’t know whether it’s Tuesday or Thursday either.

‘It’s good that there are two of us,’ Jannicke says, scratching his head.

Kiwi purrs, the living embodiment of carpe diem, unaffected by the concerns of the world. But Jannicke is feeling stressed. The check-up that will tell them how the disease is progressing is getting closer and closer.

‘I find it embarrassing, everyone seeing how stupid I’ve become. If I fail that exam… I just don’t know how I’ll bear it.’

Chapter 6

Why did Jannicke of all people get dementia?

Jannicke feels guilty for drinking so much Pepsi Max. Didn’t she read something about that somewhere? About how diet soda can cause Alzheimer’s?

She is still only middle-aged. She has never smoked, she has lifted weights at the gym and really thought she was living quite a healthy life. Nevertheless, she got sick. Has she done something wrong?

Has she ingested aluminium from old pots? Used too much deodorant with antiperspirant? Slept too little? Stressed too much? Should she have eaten more blueberries? Drunk more milk? Or wait, is it pomegranates that are supposed to be beneficial? Does she have a vitamin D deficiency? Or B3? Has she solved too few Sudoku puzzles? Has she breathed polluted air? Lived near high-voltage power lines? Is the dementia the result of low-grade inflammation in her body, from microbes in her gums? Or is a herpes virus to blame?

Those who consult Doctor Google to find ‘the cause of dementia’ get 368,000 articles thrown at them. A cacophony of opinions and warnings veering in all directions.

‘Mouth ulcer virus increases risk of dementia.’

‘Three glasses of champagne a week reduces the risk of Alzheimer’s and dementia.’

Hildegunn rattles off the kind of titles you see: ‘Do you have dementia? Check for these signs’. And Jannicke continues, in the same mocking tone: ‘If not, just you wait, you’ll have it soon!’

It’s all so confusing. They manage to laugh a little, finding that option preferable to crying. The truth is that dementia is a complicated condition that researchers are working flat out to understand. No one can say why one person, why Jannicke of all people, has developed Alzheimer’s. And for any one person there probably isn’t only one reason, but several. A combination of vulnerability and misfortune. There is no point thinking that Jannicke has ‘brought the dementia on herself’. Some people do everything right and still get sick. Others do all sorts of things that are bad for them and stay healthy.

But let’s look at some of things that the researchers think might be linked:

Age is considered the most significant factor. Even though dementia is not a natural part of getting old, the risk increases the older you are. In this context, Jannicke is considered young. More women than men are affected. She can check that box. Does she have high blood pressure, diabetes, high cholesterol or other underlying illnesses that inhibit the flow of blood to her brain? Not that she’s aware of. But all these are known risk factors. That is why a healthy lifestyle, everything that is good for the heart, also contributes to protecting us from dementia. It’s the same old lecture: don’t smoke, work out, eat cabbage. And broccoli. So-called cruciferous vegetables are supposed to be extra good for you. And let’s not forget the latest superfood: pomegranate! Run, preferably with intervals so the lactic acid is adapted and burned more efficiently. Breathe. Pant. All physical activity is good. Just don’t start with boxing. Receiving hard blows to the head, or suffering a concussion in other ways, significantly increases the risk. Jannicke has never boxed. She hasn’t suffered any head injuries on the football pitch either.

Is there a vulnerability in her genes? Jannicke’s paternal grandmother had dementia. Her paternal grandfather managed to hide it for a long time, likely out of shame, and her grandmother lived into her late eighties, but Jannicke remembers how confused she was. She has always considered herself more like her maternal grandmother, who had no issues with her mind.

Her paternal grandmother never underwent any genetic testing, but researchers have pinpointed several suspicious genes. One of the gene variants that may have to do with the plaques that form in the brain is called ApoE4.

Poor hearing and depression are also linked to dementia. Other findings are more difficult to understand. You shouldn’t get too fat, particularly in the middle of your life. But later in life you also shouldn’t be too thin. Alcoholism is obviously harmful. But dementia occurs more frequently among teetotallers than among those who drink in moderation.

Champagne providing protection from dementia is one of the more speculative theories. Unfortunately. Otherwise Jannicke would be fine. There has been a lot of partying and bubbles, singing and dancing with friends over the years. And there still is. Which in itself is considered beneficial. Keeping active, both socially and mentally, is important. That is why higher education is associated with a lower risk of dementia. Every extra year spent in education slows the ageing process down by four years. Researchers have calculated that you lose ten per cent of your cognitive capacity in the year following retirement. That’s when you should get a hobby. Don’t just solve more and more Sudoku puzzles, but do something completely new so that new connections form between the neurons in your brain. Start playing the guitar. Learn Russian.

Perhaps the key word is epigenetics. Different people react in different ways to the same type of exposure. Being genetically predisposed isn’t enough. Something has to activate the genes. But what might have activated Jannicke’s Alzheimer’s remains a mystery.

Chapter 7

Jannicke’s coping strategies

‘Those who protest have a worse time of it. Protesting is like wearing a bikini on Christmas Eve because I think it’s better that way,’ Jannicke says.

The defiance stage is over now. The dementia has come to stay. They need to learn to live with it. It took Hildegunn a year to accept the diagnosis. To wrap her head around it all. How life is and how it might eventually become. No Google search takes her to any solution. She can’t make a telephone call to cancel Jannicke’s condition. But she needs to make a lot of other calls to get help.

Send emails here and there. Google her way around the Norwegian Labour and Welfare Administration system and Oslo Municipality, which offers different services in different parts of the city.

After a lot of ifs and buts, Jannicke gets a place at a day centre for younger patients with dementia a couple times a week.

image: The journey into dementia

‘Now I just do what Hildegunn tells me. She does everything she can to make sure we have a life. So I can’t just behave like a child and refuse to cooperate,’ Jannicke says.

So she uses her transport card and is taken by taxi to the other side of the city. To this club that no one really wants to be a member of. It’s called Villa Enerhaugen. In Tøyen.

‘The day centre’s on the ground floor. That’s for those of us who are still managing okay. But it’s a four-storey building and it gets sadder and sadder the further up you go in the lift. So when you reach the third floor… up there it’s Jølstad or something. The funeral directors,’ Jannicke says.

We go with her one day to what she calls her ‘minimum security prison’. Turns out the defiance stage might not be completely over. Jannicke considers the day centre a holding facility. She goes there to give Hildegunn a little time off. But the people who work there aren’t so bad. They sit on the sofa and talk to her about what’s in the news. Read aloud from the quiz in Aftenposten. Offer her a puzzle with 1,000 pieces. Make omelettes. The other service users are okay as well. For the most part. Even though sometimes it’s too late for them by the time they get there; their disease has progressed too far and they are out of control and need to be asked to take the lift up one floor.

‘Many of them are irritated and frustrated. For example, a man I see sometimes. He’s so angry. He’s the one who earned all his family’s money, and now he gets nothing, he says. He just gets pocket money and feels incapacitated.’

image: The journey into dementia

Eventually Jannicke and Hildegunn move from Smestad to a new flat in Frogner. They have to downsize for the sake of their finances. And they hope that Jannicke will benefit from living in Frogner, since she spent a lot of time there when she was younger. Maybe she’ll have some sort of map of the neighbourhood buried deep in her memory. She changes day centre. Goes for walks with other dementia sufferers. People who are ten or twenty years older than her. She thinks they could be her grandparents. She is often mistaken for an employee.

And while Jannicke and her new friends drag themselves out into the icy streets with crampons strapped to their boots, Hildegunn sits at home and sends even more emails. Makes even more phone calls. Tries to build a system around Jannicke. It takes a lot of pestering and begging.

Just getting a support worker on Mondays and Wednesdays took two years. Then there’s the welfare service centre for the elderly on Tuesdays. This is how the week is filled up so Jannicke isn’t always home alone.

The hands on the clock face, which have become so difficult to interpret, move round and round. Sometimes Jannicke has plenty of time. A bit too much time. At the same time, she is short of time. As the days go by at a snail’s pace, the disease closes in. No one knows how quickly the black spaces in her brain will get bigger.

Can she feel the change?

‘Yes. I get more tired now. I need to take short naps during the day. Almost like a baby. I sleep for fifteen minutes here and half an hour there. Drop off.’

It is getting more difficult for her to follow conversations when she and Hildegunn go to parties.

‘Across the table, if there’s a lot of noise. But surely everyone struggles with that? The problem is I get stressed. If someone says something to me that I know is important, I think “I NEED to remember that” because I don’t want to become someone who forgets important things people have told me in confidence. But I still forget. So… I guess you could say I’ve become good at keeping secrets.’

‘Do your friends know about your condition?’

‘My closest friends know. But then sometimes I meet someone in the street who I might not have seen in a while and I can’t really remember where I know them from either. That’s horrible. So I err on the side of being too excited to see them and try to be extra cheerful.’

Jannicke has developed several coping strategies. For example, for when she is at home alone for a few hours and the restlessness builds like a cyclone inside her. A lot of strange thoughts and fears whirl around inside her head.

‘We’ve talked about what you can do when you feel that way, and we’ve agreed that you should use that energy for something. Vacuum and clean, right?’ Hildegunn says, giving her an encouraging smile.

‘I can smell the cleaning products out in the stairwell when I get home. That’s how I know when you’ve been feeling agitated.’

Jannicke nods.

‘I need to get the vacuum cleaner out. All the time. Then I calm down. It’s mindfulness. I sing to myself as well. That helps.’

‘To live is to love.’ The old song from the girls’ choir. Over and over again.

After the episode with the snow shovelling around the cabin, they had another clever idea: if she is alone and gets something into her head, she can text Hildegunn to check.

‘Was I supposed to tidy the garage today?’

Their texts can be read as a kind of log of her confusion:

‘Can you call me?’

‘Should I call you?’

‘We’ve already spoken.’

‘I feel like when you’re alone, Jannicke, without someone to keep you right, you quickly spiral. Then all sorts of strange things can go on in your head. “Did someone tell me such and such? Are we going there tomorrow?” Then you need to check in with me so I can say “no, that didn’t happen” or “yes, that’s right”,’ Hildegunn says.

Jannicke nods. Her iPhone has become her most important tool in her everyday life. That and the vacuum cleaner.

Chapter 8

Is there a cure?

Jannicke isn’t the only person who is short on time. Dementia is a disease that affects society as a whole. The population is growing, with researchers predicting that twice as many Norwegians will be receiving the same diagnosis by 2040. They need to find a treatment, and fast.

Today, the medicine cabinet is despairingly empty. There is no cure. No vaccine to prevent it. No tablet to slow it down. No concoction to reverse it. Nothing. All we have are a patch and some pills that in the best case can relieve symptoms. In some people.

But wait, we hear you say. Hasn’t the mystery just been solved? You said so on Dagsrevyen, on Monday this week! And on the front page of VG, in a sensational piece on Tuesday: ‘The Alzheimer’s breakthrough’, it said. Declaring that a miracle cure has been found generates traffic and sales. Everyone wants to read good news, and it’s tempting to hyperbolise. This is what happened: Norwegian researchers at the University of Oslo and Akershus have published an article in the journal Nature describing studies on roundworms and mice, and on cell models. Their hypothesis is that the brain cells of Alzheimer’s patients are unable to dispose of waste products. It piles up and causes the cells to die. By adding certain substances that occur naturally in pomegranates, among other things, these researchers think that they can stimulate the cells’ ability to clean themselves, something that might stop, or at least slow down, the progression of the disease. They envisage a cure consisting of a specially adapted diet supplemented with a pill. And it sounds great. The problem is, Jannicke isn’t a roundworm. Or a mouse. Or a cell model.

At least five to ten years of clinical trials in humans still remain before they can know whether the ‘breakthrough’ is valid for real patients. The dietary supplement might help, it might have no effect, and in the worst case, it might be harmful. We don’t know yet.

In any case, it’s too late for Jannicke to be cured by jubilant media reports. To prevent dementia, the researchers need to be able to detect it much earlier than they are currently able to, long before the patient starts exhibiting symptoms. Perhaps through a blood test – which they haven’t come up with yet either – performed by GPs? Once the plaques have already formed in the brain, as they have done in Jannicke’s, no amount of pomegranate is going to help, not even if she ate it morning, noon and night.

What about researcher couple the Mosers and their rats in Trondheim? After all, they discovered something important as well. They were even awarded the Nobel Prize. Didn’t they solve the mystery? Can the Mosers and the mice help Jannicke?

‘One step closer to solving the Alzheimer’s puzzle,’ wrote NRK.no in the autumn. Unfortunately, they were laying it on a bit thick. The Mosers are researching how the brain works. They are not researching Alzheimer’s at all. Or a potential treatment for Alzheimer’s. What they have discovered is where in rats’ brains their GPS is located, the so-called grid cells that allow them to navigate in space. In short, their sense of orientation. They have also discovered where in rats’ brains they sort their memories into the correct order. In short, their sense of time.

There is still a long way to go from there before a 54-year-old woman in Oslo can take a medicine that cures her of Alzheimer’s.

‘What we are doing is basic research that will not be able to help patients for a long time,’ said Edvard Moser himself to Aftenposten when they received 50 million kroner for Alzheimer’s research from a widow who had lost her husband to the disease. But for it to be possible to cure the disease in the future, we need a better understanding of the brain.

Every morning, after her shower, Jannicke sticks a special patch to her shoulder. It is one of the few things she actually never forgets. Her anti-dementia patch. The substances it contains seep in through her skin, into her blood, and flow up into her brain, where they facilitate communication between the nerve cells. The medicine doesn’t stop the progression of the disease, it doesn’t heal, but it helps with the mental capacity that Jannicke has here and now. Jannicke also takes a yellow, oval pill. This can’t revive lost brain cells either. It can’t help her interpret the hands on a clock again or find her way home from the grocery store. According to the doctor, the tablet has ‘a generally stimulating, positive effect on the brain, one that is quite unspecific’.

Dementia research has a long way to go. For many years, cancer research has been given higher priority. Dementia research might be as much as 20 to 30 years behind. The competition to launch an ‘antibiotic’ against Alzheimer’s is now fully underway:

In the USA, they are testing a new medicine that directly targets the plaques in the brain. The clusters of protein. We don’t really know whether the plaques are cause or effect, that is to say whether they cause the problems or whether they are just a sign of trouble. But when the plaques are removed, the patients feel better. And that is promising.

Another exciting lead is lactic acid. The painful substance excreted in our muscles when we exercise, making us stiff and sore. Up until now, lactic acid has only been considered a waste product in the body. Something we just want to get rid of. But new research shows that lactic acid acts as a signaller in the brain. It triggers the formation of new nerve cells, connections and blood vessels, something that might explain why active people more rarely get dementia than inactive people.

image: The journey into dementia

And in a refrigerator in a laboratory at Rikshospitalet, 60 tiny brains float around in fluid. The mini brains have been grown from human cells, from skin that has been reprogrammed to become brain tissue. The researchers inflict trauma on the brains and experiment with different medicines to save them. They dream of transplantation. Of a future in which it is possible to replace dead brain tissue in dementia sufferers with brain tissue grown in a lab. Of recreating some of what has been lost.

Chapter 9

How is Hildegunn coping?

Hildegunn has started going to therapy. For her own sake. To cope with the situation she finds herself in as Jannicke’s next of kin. The therapist suggests creating an inner landscape she can use to get in touch with her emotions.

‘I picture us in a mountain landscape.’

She closes her eyes.

‘I go ahead to scout. Where is it safe to go? Where are we going? I pave the way so that my flock can follow. That’s what our relationship is like now. I climb up high and try to work everything out, but then the fog rolls in. It’s impossible to see where we’re going and then I lose sight of the flock.’

That’s how she feels. Powerless. Hildegunn becomes almost unable to breathe. There’s nothing she can do. She starts hyperventilating and crying.

‘But when I’m with the therapist, the weather can also improve. The fog recedes a bit and some sunlight manages to get through.’

‘“Go and get your flock,” the therapist says. “Then sit there on the mountaintop together. Then we’ll let the fog roll in again.” Then I feel calm. Because fog’s not so bad as long as you have each other.’

image: The journey into dementia
Hildegunn and Jannicke together in front of a cabin

She thinks the inner landscape illustrates the feeling she is struggling with – the feeling of gradually losing someone over a long period of time. Without knowing the way, not even the direction, and without being able to do anything.

The imaginary hike in the mountains helps. Hildegunn thinks about it a lot. About how this is the challenge now:

‘Being able to sit in the fog on the mountain and feel okay without knowing where we’re going. Being together as best we can. Here. Now. Trying to enjoy what we have in the thermos and sharing an orange.’

Watch Hildegunn read Kolbein Falkeid’s poem ‘Hvor vi hadde det fra’ (Where We Got That From), which is a comfort to her:

But who said our days would be free? That they should spin around on the wheel of fortune in our hearts and every evening stop on a prize? Who said that? Where did we get that from?

Who said that our lives would be easy to build? That the bricks were square balloons that would arrange themselves? Who said that? Where did we get that from?

There were pills for everything: nerves, persistent coughs and anaemia. But who said the shortcuts would always be possible? That the mountain passes would never be impassable? And that we wouldn’t get stuck in the tunnel? Well, who said that? Where in the world did we get that from?

-

It’s kind of like… for me it’s… in a way it’s all I’ve got, so this is a kind of acknowledgement of the fact that sometimes the mountain passes are blocked by snow and someone’s going to end up stuck in a tunnel and… this time it’s us. But I think we’ll make the best of it. I think we’re good at that.

But Hildegunn also has a recurring nightmare. In this nightmare, she herself has received a terrible diagnosis. ALS.

‘I’m sitting in a wheelchair that I control using my mouth, with a joystick, while Jannicke walks along behind me, physically hale and healthy, but with no idea where we’re going. And I tug and pull at the joystick with my teeth. “No, not there, there!” I wake up dripping with sweat and despairing.’

It helps to meet others in the same situation. A kind of self-help group with nine other couples where one of each pair has dementia.

‘We spent a whole weekend together and people drank wine and beer in the evening and couldn’t remember where they were the next day,’ Hildegunn says, laughing.

‘It was really nice. Almost like camp for adults,’ Jannicke says.

Frustration and despair. It’s easier to cope when you know you’re not alone. When you know you’re not the only ones to have drawn the short straw in the health lottery.

‘Doctors like to fix people up. Give them medicine, operate, solve the problem. But you can’t fix dementia. It’s like when they get someone in with fibromyalgia. The doctor just sinks down in their chair, like “oh, why won’t they just leave?” That’s what it feels like for a lot of us,’ Hildegunn says.

‘Is dementia something to be ashamed of?’

‘Well, that’s our experience when we meet other people who are affected. It’s a really ugly, low-status disease to get. You’re not entitled to anything. If you get cancer, it’s all hands on deck. But if you get dementia… then you’re a lost cause.’

‘What do you get out of standing by her as her next of kin?’

Hildegunn turns to Jannicke. Doesn’t break eye contact with her wife.

‘The moments when we’re like we used to be. The disease hasn’t taken our relationship away from us yet. But I can see how much energy it takes out of you just to get through the days. I know you don’t have much left over for our relationship.’

Chapter 10

What should you do if you encounter Jannicke or another person who might need help?

You might meet Jannicke in the street. She might be the next person to get into the taxi you drive, the woman who is unable to tell you where she’s going. Or she might be the woman ahead of you in the queue at the grocery store, the one unable to remember her PIN code who rummages around in her handbag and finds that she is unable to pay with cash either. If it isn’t her, it might be someone else with dementia. And if so, you can make a difference. Be a good person. This is one of the reasons why Jannicke and Hildegunn want to share their story. To contribute to a more dementia-friendly society. As Hildegunn says:

‘This disease is so FUCKING MEANINGLESS. It’s so awful. I can’t think of a more idiotic diagnosis to receive when you’re 50 years old and in the middle of your life, at the height of your career. So if we can contribute something meaningful, we must. We shouldn’t just sit here feeling powerless.’

The most important thing is to remember that there are people with dementia out there. To not automatically assume someone is drunk or high and simply walk on by. People shouldn’t be scared to offer their help, Jannicke says. Shop assistants and security guards are trained to assist customers with dementia. If they see a woman hurrying out of the shop with two blocks of cheese and a packet of steel wool in her hand, they know she isn’t necessarily a shoplifter who needs to be arrested. This is important: someone who is unable to explain themselves isn’t unable to feel.

image: The journey into dementia

Dementia isn’t visible on the outside. Particularly not when it comes to Jannicke, who is still so careful to maintain her style. Some people have suggested that dementia sufferers wear bracelets they can show people when they need to: ‘I have dementia’. A symbol that society can recognise.

‘That’s a good idea. When I was little, I wore a silver bracelet that said not to give me penicillin,’ she remembers.

‘And I know a man who had a nice gold medallion made that has his name and “call this number” on it. Like a collar on a dog, so you can find the owner and return them if they’re found all alone.’

Jannicke has made a choice: she has to dare to be open about what she is struggling with. She would be happy to wear a bracelet or necklace.

But the most important thing now is the verdict. Finding out how serious her condition is.

Chapter 11

The exam

A whole year has passed since we first met Jannicke and Hildegunn. Jannicke has been dreading what she calls the exam for almost as long. These check-ups she attends at regular intervals to check how her Alzheimer’s has progressed. When the doctor gives her specific exercises to do, it’s as if the disease becomes more real. The realities are starker. She talks about it almost every day for weeks before they go to the hospital. How much she hates that she has to be tested. She says she doesn’t want to ‘fail on half a brain’.

‘I like the doctor a lot. I think he’s nice. And I’ve always been a high achiever,’ Jannicke says.

How do they themselves think things are? Has the dementia got worse?

‘How much we notice the disease depends on how stressed we are,’ Hildegunn says.

‘I think it’s worse if we’re going somewhere. There’s a lot of looking for things and confusion. “Have I washed my hair yet? Did I do it today or yesterday? What day is it today?” It’s getting more like that.’

She has noticed something troubling.

‘“Where are my glasses?” Before I could tell Jannicke “they’re there, on the table” and she would find them. Now she’ll stand looking at the table where I’m pointing. Her glasses are right in front of her and she still can’t see them.’

Watch Jannicke’s video diary about dreading the exam:

I’m filled with dread because I’ll soon be meeting the doctor at Ullevål to check whether I’ve got worse or whether something’s stabilised. I sometimes feel like I’m on top of it and able to remember quite well, but then suddenly it’s like I can’t recall anything and like I almost don’t know what the question was, and then I feel very frustrated and get very sad and scared.

‘The thing I find saddest is that my children are going to end up with a confused mum,’ Jannicke says.

‘I do my best, but even my best isn’t great. I remember what my grandma was like in the end. The worst thing would be ending up like that.’

Her doctor has pink socks with a banana pattern. He is also wearing a matching pink shirt under his white coat. He speaks Swedish with a Skåne dialect. His name is Peter Bekkhus-Wetterberg, and he works at the Memory Clinic at Ullevål Hospital. There is a rubber model of a brain on a shelf in his office.

‘I think I might have been here before.’

‘Yes. You’ve been here several times,’ Hildegunn says.

Jannicke will take the cognitive tests alone, without help or interference from anyone. Only she and the doctor can be in the room. First, he asks her to draw some geometric shapes. Two pentagons intersecting each other. Jannicke tries to copy them using a pen and paper. Afterwards, they look at the result together. It is strikingly different from the original.

‘It’s like everything’s a blur,’ she says.

‘Your eyes aren’t the problem. The problem’s in your brain. Right at the back, towards your neck, in the parietal lobe. The test shows that this area is damaged. We know that this is typical of Alzheimer’s and means that it is difficult for you to interpret visual impressions,’ the doctor says.

But how important is drawing pentagons, really? Surely Jannicke can live a happy life regardless? Unfortunately, the test is a way of measuring damage to the brain that explains very real problems she has in everyday life, the doctor says. That’s why she gets disorientated. Why she struggles to recognise visual cues. Poor lighting makes everything even worse. That’s why Jannicke has suddenly developed a fear of the dark.

‘Roof, banana, needle.’ The doctor gives her three simple words to remember. Three commonly used nouns. When he asks her to say them back to him only a few minutes later, they have disappeared.

Why? Peter Bekkhus-Wetterberg explains that this damage is in another part of the brain, in the hippocampus. Do you remember how memory can be compared to a tape player? Jannicke’s record button is and will remain broken.

The doctor gets out the dreaded clock faces and asks her to interpret the hands, which are randomly positioned. It is pure torture to her.

‘Quarter to… two? No, three? And that one’s twenty-five past… six? Hm. Half… Twenty-five to… No. I hate this,’ she sighs.

Jannicke needs to sit an ‘exam’ in being herself and fears failing on half a brain:

It’s not like they’re testing you- It feels like a test to me, and the first time I went it was worse than sitting an exam, like at Blindern or something. When you see that professor man standing there, and you can fail on half a brain. Shall we have a go? For example, it says ‘cooking not applicable’. That’s if you don’t… Yes, if she no longer cooks. Yes, that’s kind of the case. So what you do is look at these clocks and tell me what time it is. What time does this clock show? Five… it’s hard because it’s between the marks. Mm. Hm.. two? No, three? I’m not sure. No? Let’s look at the next one. Twenty-five past… Mm. Six? No. What about this one? This just looks like the splits to me. It feels like it too. No, I don’t know. No. I hate this. It’s just awful. Pride isn’t my best friend at the moment.

Peter Bekkhus-Wetterberg’s patients sometimes get angry with him. They call him a psychopath because he shows them everything they’re no longer capable of and draws conclusions from the findings. Decides whether they can still work or drive.

‘It’s like you’ve failed at being yourself,’ Jannicke says.

The doctor doesn’t agree with this, not today. The exam didn’t go that badly.

‘There are some things that have become more difficult for you, but I don’t think things have got dramatically worse since last year. I’d also like to point out that some things are good. Particularly your ability to express yourself. Some nouns have disappeared, but you find creative ways of paraphrasing.’

Jannicke takes a photo of the doctor’s banana socks. An amusing detail amidst all the seriousness.

Afterwards, she and Hildegunn stand outside the hospital building and compose themselves.

‘Peter’s a lovely man. He always makes you feel like you’re doing well even if some of the tests perhaps didn’t go like you wanted them to. The thing about you not wanting to go out in the dark and struggling with time and place and contrasts. And the thing with the clock. It all matches up with what we experience in everyday life,’ Hildegunn says and summarises for Jannicke:

‘He also says that nothing dramatic has happened. It’s not progressing very quickly.’

‘Yes… but there were a lot of holes there.’

‘Holes? Your mean on the MRI of your head?’

‘I could see them.’

Jannicke is talking about the dark spots. She saw them in the office, on the doctor’s computer screen. In her own brain. Black holes where the brain cells have died, right in the middle. And further back towards her neck, in the back of her head, where he said there had been shrinkage. Does she think it’s good to find these things out?

‘I don’t want to be protected. I don’t want anyone going behind my back in any way. Or embellishing the truth. Because… then you’re just lying to yourself,’ Jannicke says.

Chapter 12

The difficult conversation

Jannicke has a somewhat fresh memory. One day, from a distance, she spotted a famous person she has always admired, with the same diagnosis, over by Solli plass. The impression must have stuck in her ravaged hippocampus because it was so shocking.

‘He was completely in a world of his own, trembling, with unseeing eyes. It made me feel really sad. Because it was kind of like looking at what’s in store for me.’

Hildegunn remembers how upset Jannicke was when she got home.

‘You said “if I ever get that way, shoot me or give me a pill”.’

There is silence for a moment.

‘We don’t think like that anymore.’

Jannicke shakes her head.

But Hildegunn only plans a month ahead now. No one knows what might happen in the course of a year. Eating all the pomegranates in the world won’t help now. The other day, another word disappeared from Jannicke’s vocabulary. They walked past the bakery and Jannicke wanted to buy some bread, but in that moment she was unable to say ‘Baker Hansen’ anymore.

‘All that came out was “hakebakebake”. So we laughed it off and now we just say we need to go to Hakkebakke Forest, the one in the children’s book, when we need bread.’

No one survives dementia. The average patient lives for twelve years after being diagnosed. No one knows whether the progression is quicker if you get sick when you are younger. What we do know is that the brain keeps shrinking. The brain cells die, the connections between them stop working, the body doesn’t receive the signals it needs to live. More and more functions are lost. Memory, sense of orientation, language, recognition, and then – towards the end – the ability to feel hunger.

And finally: the ability to breathe.

What if Jannicke gets so bad that she is no longer able to recognise Hildegunn? Neither of them want to imagine what that might be like. But they have caught wind of a construction project up in Tøyen. A plan to build a special garden city. A small gated community for people with dementia. Inside the fences, the residents will have freedom of movement, and there will be streets and a supermarket and restaurants and a theatre and a hairdresser, just like out in the real world. Jannicke will live here when it becomes necessary for her to check out of life at home with her wife. She thinks it sounds better than the linoleum corridors in a normal nursing home.

And even thought they won’t always be able to live together, Hildegunn will visit. Even if they can’t have conversations anymore. Hildegunn will still visit.

She has a promise to keep, from their wedding. A promise to keep and a hand to offer.

Sources: Norwegian Health Association, Norwegian Institute of Public Health, forskning.no, The Lancet, Nature, Danish Dementia Research Centre, Store norske leksikon, nrk.no and Retriever. Expert interviews with Johanne Egge Rinholm, brain researcher at Rikshospitalet/University of Oslo, Peter Bekkhus-Wetterberg, specialist in geriatrics and consultant at the Memory Clinic/Oslo University Hospital, Tormod Fladby, professor of neurology at the University of Oslo and dementia researcher, Lisbeth Rugtvedt, former secretary general of the Norwegian Health Association.

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