The cattle, a torch, Chopin and my lovely Dad: a journey with Lewy body dementia

MY father has been going on about the cattle for weeks now. He has difficulty speaking. It is not easy to understand what he is trying to say. All I know is that he wants to drive the cattle into the river camp.

It doesn't help to mention that there are no cattle. That all the cattle are on the farm. That my brother looks after them well. I call my brother. The phone is on speaker. My father is holding the phone with his trembling hands.

“What are we going to do about the cattle?” he gets out with difficulty. My brother is patient. He talks to Dad about the camps as always. The eucalyptus camp. The mountain camp. The dam camp. The one on top of the TV koppie. The one at the “matjien". Somewhere deep inside me a profound hurt is stirring. But I don't cry. Tears are hard to come by these days. 

“You're dropping me," my father tells me when Donovan hangs up. I don't know what he means, but I know I still want my father's approval. Even if he is confused.

Lewy body disease

My father has Lewy body dementia (LBD). That's what a neurologist tells us on a clear Wednesday morning in April last year after we drive before sunrise to be in Gqeberha for our appointment. Covid is still intense. We wear masks in the car. I try to keep the windows slightly open for ventilation, but my father gets too cold.

I explain to the doctor with the small spectacles and a calotte on his head that a Bloemfontein neurologist diagnosed my father with Alzheimer's disease two years ago. That he told him he had two years “before you will fall off the cliff". And that my father has been living  with a consuming fear ever since.

A burning train

The preamble to this appointment begins with a call from my mother on the farm. She can't cope with my father on her own any more. The nights are too bad. He gets stuck in his dreams, fights and cries about the fear and enemies only he can see.

She now wants to live in the house across the road that we bought for them for “one day".

She remembers that day like a scene from a movie. How my father first hides the bakkie's keys because he is convinced we are going to have him committed. The paranoid calls to my brother Mike, the only one he believed was not part of the conspiracy against him. How she throws clothes in suitcases and finally gets him in the car. And how, when she turns left at the farm's yellow sign with the Bonsmara bull on it, she knows that her life on the farm is over.

The father who arrives at my place is totally bewildered. He has not slept for three nights. That night I lie on a mattress next to their bed. There is a train that is on fire and children are locked inside. He cries. He peeks through the curtains. “Hack open the locks!" We have to save the children.

By the time I am staring at the beautiful artwork behind the neurologist's desk, my father has been sleeping for weeks, consumed by terrifying dreams and images. (One night he hysterically started pulling the covers off the bed, “because all the soldiers next to him are dead and the Russians are coming".)

At the neurologist's, he sits quietly and dejectedly. I'm so tired I talk like a drunk. My mother is sobbing like a child. The doctor hands her a tissue.

Not Alzheimer’s

It takes less than 10 minutes for the doctor to diagnose my father. He does not have Alzheimer's, but a different form of dementia. LBD is the second most common form after Alzheimer's, but one about which we know much less. (One American Lewy specialist rightly calls it “the most common disease you've never heard of".)

It is usually accompanied by Parkinson's. That explains his shaky hand. And clumsy way of walking. And the hallucinations. LBD is characterised by frightening hallucinations.

On the way out, Dad speaks for the first time. “Doctor, so you can’t help me?”

“No, I’m sorry, there is no cure for your condition,” he says.

“Thank you, doctor,” says my well-mannered Dad, who always places himself second. 

It feels like my heart is being cut out of my ribcage with blunt scissors.

Behold the ships

The bay is full of ships waiting to enter the port.

I take an exit towards the sea. We park next to the Bluewater Bay Surf Lifesaving Club. Two kiteboarders are soaring over the brownish water.

We eat boiled eggs and sandwiches and drink tea with Marie biscuits. I try to process (and sell) the Lewy diagnosis as good news — at least it is not accompanied by the memory loss of Alzheimer's. And we were given medication for the hallucinations.

I think my father is too exhausted not to want to hold on to even the slightest possibility of a silver lining. He sleeps all the way back to East London.

A long time coming

It's a good thing I didn't know then what I know about LBD today. That it is “thought-related rather than memory-related". That one loses one's speech over time. That the hallucinations, paranoia and dreams can be controlled only up to a point. That there is no medication for LBD because the deposits on the brain (the so-called Lewy bodies) can cause it to change from one week to the next in such a way that something that works today can be dangerous tomorrow.

Today I realise that the day in the neurologist's office was just another short white line on a long runway. I didn't know my father had lost his sense of smell seven years ago — one of the first signs of dementia.

But it is the anxiety, which has been a long time coming, that I now realise was the strongest indication. We have always joked about my father's capacity for concern. About how he could stress about everything. Whether he had boiled the needles for cattle injections long enough. Whether we had checked the water and oil in our cars (and then did it himself three times in a row before anyone could leave on a long journey). The U-turn at the front gate to check again if he had locked the house...

Today I understand that my father experienced extreme, abnormal anxiety for decades. That the first roots of his illness originated years ago. And that we can be grateful that we had him relatively whole until the 80th year of his life.

13 months later

The 13 months since I first heard the words “Lewy body dementia" feel like a lifetime.

The hardest thing to accept is that my beloved Dad is never going to get better. That it will only get worse and worse.

But there is one small grace with LBD. The doctors call it “fluctuating cognition", and it means that sometimes there are inexplicable moments, sometimes even days, when the person suddenly becomes relatively lucid.

It is during one of these phases that we return to the farm for the first time. We have a braai in the evening. My father drinks another beer.

The morning before we drive back, he asks if we can take a picture on the stoep “for old times' sake". He says he feels that today is the day “of farewell".

I looked at that photo again this afternoon. My father wanted to stand on the steps of the stoep. Ramrod straight. My mother hooked her arm around him. Dad looks past the camera at something in the distance.

Small moments

When we were little, my father would play classical music for us as we lay in bed. Music has been a lifelong passion. We brought his big box of CDs from the farm and set up the player in the spare room. Sometimes he lies there and listens to music. He is always very specific about what we have to put on. I sit on the bed with him one afternoon. He holds my hand as we listen to Beethoven's Ninth Symphony. There are tears in my father's eyes.

Dad believes people are going to steal his CDs. For a long time, he transfers the box to my house every day to “store" it here. In the meantime, we find a box where he can lock it in his room.

He is obsessed with his torch. The expensive rechargeable one we gave him a few Christmases ago. The torch must be on hand at all times. On the table when he eats. Next to the bed when he sleeps. He walks around the house a lot. Mostly with the torch in his hand. Especially late afternoon when it starts to get dark. As he did on the farm to make sure everything was locked.

And then one day my father and I go out to the street to herd cattle. The advice is that you have to accept the “well-formed hallucinations" of LBD as reality. It doesn't help to tell my father the two guys in the corner of his bedroom are not there. To him they are. Or “the men who got up from the couch" and sit and stare at him. Or the many fires we've been through by now. And so also with the cattle.

When I no longer know what to do about the cattle that have to be removed from the street, I tell him we should herd them to the garden, where they can sleep. The neighbour hears me shouting at the cattle in front of his house. “Hak, hak." My father is at the bottom of the street,  herding the cattle from that side. The neighbour comes to help. “Oom, you should now just make sure the gate stays closed. I will ensure the guys from the pound arrive early to collect them."

Good and bad days

There are good days and bad days. Good moments and bad moments. More bad than good. But I'm reaching a point of acceptance.

I grew up with a ritual. We always gathered at six o'clock for a drink before dinner. I'm doing it again for my Dad. At 5:55 pm, I saunter across the road with wine in a basket. When I walk in, my Mom has already placed the bottle of (alcohol-free) beer on the kitchen table. With a bottle opener. And a beer mug. For her there is a tall glass for her gin and tonic.

We sit on the stoep. I fetch a blanket for my father's legs. Most evenings, he still raises his mug and says, “cheers".

♦ VWB ♦

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