My dad’s dance with dementia

A story has been grinding in my head for a long time about my father and his dementia. He ended up in the hospital again during the jacaranda time of 2020. It came with the gift of the purple season – the road from my house in Johannesburg through the jacarandas in Eerste Laan, past the German school, up with Loch over Jan Smuts, to be greeted again by the guard of honour of the jacarandas, and up in Sherborne and left to Donald Gordon Hospital.

It started with the first few purple flowers that brought promises. We entered the hospital stay when the trees were in full glory, and we exited when the flowers laid on the floor like a carpet of honour.

Jakarandas

Three weeks of hospital visits, with a weekend break in between.

It was not Covid this time. That path we walked in June when he was admitted to the hospital with delirium and dehydration. This time it was different manifestations of Parkinson’s disease and frontotemporal dementia (FTD). Dehydration, infections (and then the delirium it causes), and the challenges that Covid visits brought to the care unit where he stayed were some of the main reasons he went to the hospital.

Degenerative, they say of FTD. A disease for which there are probably many adjectives. A condition that affects the frontal and temporal lobes.

He was only officially diagnosed with this at the beginning of this year, after which he went to the care unit shortly before the start of the pandemic. It is an early-onset dementia (60% of cases are between 45 and 60 years old). It is sometimes confused with a midlife crisis due to the personality change it causes. This means it is often misdiagnosed until the symptoms are without-a-doubt FTD.

A diagnosis of dementia with Lewy bodies in 2013 was probably the beginning. Who knows. It also does not really matter, because degenerative means after all, there is nothing one can really do other than to manage the symptoms. And keep on loving.

Those who are interested in the brain will know that the frontal lobe is in a sense responsible for being human. It controls your cognitive ability, your emotional expression, your problem solving, your memory, your language and your judgment. This is where the essence of your personality and your communication ability lies, say the smart ones.

And this is what dissapered. Piece by piece. On and off.

FTD makes people damn rude at times. There are difficult days when one hides for a fist or a curse. If you knew my father, you would not know whether to giggle or wonder in amazement at how thin the line between common sense and unhealthy mind actually is.

I accept that I can not be objective about my father. But I think most people who know him will be able to testify to his empathy, his language ability, his thinking. A human being with an incredibly sharp mind. The legal philosopher. The linguist. The human rights lover.

Covid visits

Seeing this disappear – piece by piece – is sometimes the cruellest thing that could happen. His brain, the brain that devised and produced a myriad of articles and books, is literally shrinking.

It naturally challenges one to think about what the essence of being human is. If all those things that have always defined you are no longer there, you do not cease to exist. It is an abomination to say “the person is no longer there”, because they are. One is more than the sum total, and the absence, of the characteristics you are known for.

This is ] something I think about a lot these days.

He is the empathetic Lourens who could conjure with words, and the Lourens-with-dementia who curses about the quality of the food he gets, and his totally loses it because fo the poorly worded court documents (which do not exist) that I can not do properly because I am supposedly lazy.

One must be able to handle all of that while processing the loss that the disease brings daily.

Christmas 2019

When the jacarandas turned green, my dad went home to be among the people who love him. With care. And every day that brought a different challenge.

Like Tom Hanks’ chocolates – you never know what you’re going to get.

Some days are happier than others. Dress rehearsals dramatize the past in a type of “faction” – not facts, but also not fiction. The neurons in the brain jump, jump, jump, and sometimes they miss and hook on to a lost memory.

For example, I had to hurry to look for a gown one evening and get the court documents ready. Those that were apparently so poorly written. We are late, the pieces are an embarrassment. I’m lazy. Ask for a postponement! Ask for a postponement!

I can at least report back that I could get the clerk of the court to move the date to another day so I could fix the court documents.

Dressing up for court

To the children’s amusement, we were also in Angola, the birthplace of his father. He was so sincerely glad to see my husband and me there – that we made an effort to go all the way there. We would ask for fishing spots so we could go fishing that day. There was a peacefulness in the dream world that his brain created for him.

Other days are a dress rehearsal for something else. With questions about his illness, about a humane existence. The answers that are as unbelievable to him as the fantasy world in which he sometimes lives. Anosognosia, they call it. Then the questions must be answered with a bite on the lip to disguise your own sadness. One cannot give hope, but one can also not talk to people as if they are already dead, even if one mourns so constantly.

And how does one talk about death with someone who is dying? Where are the masters that one can learn “how to die”? No one is a master. Nobody.

I could perhaps find answers in our shared love of philosophy and turn to Seneca. After all, he said things like “it takes a lifetime to learn how to die” and “constantly explore death”. Well knowing that there are no masters.

In the process, it is instead I who learn the lessons, and find meaning in advice such as “constantly exploring death”. I will add – “while making sure you live true to yourself”.

January 2021

I want to believe that if one can master that art, the story of life will make sense, and death will be a natural conclusion. Many days my children also learn valuable lessons – lessons we no longer learn because we lock away illness and death. People’s illness and death have become an abstraction. Now they see ageing and experience death as an integral part of life. An inevitable part. A cycle.

Sometimes they mock me when I help clean wounds or try to repair the damn catheter: “Mom, now you are no longer a useless doctor”. Then we just laugh, because there is truth in it.

I also learned practical things. The one caregiver thinks I missed my calling – I’m apparently channelling Florence Nightingale with the suprapubic catheter. But I assure her that I am stunned that I have not yet dramatically passed out due to my vasovagal syncope. (Like the time with the ER trip – from Sorbet from all places – over a broken toenail).

Over the past few months, I have watched in amazement as nurses, caregivers, and physicians treat what is a stranger with so much compassion and care — proof that we, as human beings, have a natural capacity for caring.

I also learned that sometimes you surprise yourself with your abilities when your limits are tested. And how easily certain things come. You do not learn your life lessons in your comfort zones. (But comfort zones remain essential places to rest and build strength so you can be brave when you have to.)

There are also sad days. Days he is lost, sometimes anxious about the uncertainty of it all, exacerbated by the dementia that hinders understanding. Where you do not know if you will see him the next day.

On days like these, my mom plays his favourite of the favourites, Mahler: Ich bin der Welt abhanden gekommen.

I am lost to the world. I am dead to the world’s tumult.

Or Pärt’s “Spiegel im Spiegel”, which takes one away to another world. Then he closes his eyes and finds calm, and all that one would wish on someone who loves so immensely.

After a stormy Monday, the day after the weekend we had him admitted to hospital for the second time, I drove back while the sun was setting and played “Ich bin der Welt abhanden komommen”. Joburg wore her most beautiful sunset, and I cried incessantly, because one just does not know.

The uncertainty that this disease brings is like a dripping tap that test how long it will take before you give in and surrender. I, meanwhile, learned to brace the uncertainty. There are things that one can control, and there are things that one just has to accept.

What I’m sure of is that you live until you die. Seneca pulls that golden thread through from birth to death, and the times before and after it: “Death is the end of all our sorrows, a gate through which we cannot pass. It takes us back to that peace we were in before we were born. If anyone has pity on the dead, let him also pity those who have not yet been born. ”

So, what’s left now? To love unconditionally and without judgment. To keep space for the disease to play out as it should, without trying to control it. For the body to switch off piece by piece, and close, until it is completed. With maximum comfort and peace, in an environment of love and life.

And to sit with the contradictions in me: The wish that salvation will come quickly (mostly for him, but also for myself if I am honest – because some days it becomes unbearable to watch it). And the wish that he should not go, because I do not know a life without him.

And to sit with the tangle of intense emotions, from which I sometimes want to flee, while I know the only way is through it, not around it.

Then my dear friend sends me a quote from the film Antonia’s Line:

“Nothing dies forever. Something always remains from which something new grows. So life begins, without knowing where it comes from or why it exists ”.

And I know: Something will remain. It brings blissful resignation.

This is the only dance we dance. And the jacarandas will bloom again next year.

My dad the teacher (2015 – photo taken by my colleague Linda Stewart)

* My dad passed on, 8:45, Saturday 6 February 2021. I held his hand as he greeted death. I feel honoured to have walked that last walk with him. I miss him so much already. ❤️

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