Precarity

Lockdown. We kick and scream and try everything in our power to negotiate our way out of this reality. We challenge the minister of Police. We try to find loopholes. The vitriol on Facebook about not being able to buy alcohol or go for a run or take the dog for a walk is beyond toxic and aggressive. Somehow, we will not, cannot, tolerate that this is happening to us. Regardless of horrific statistics of the number of deaths globally, we simply cannot get our heads around a lockdown.
Yet, we think nothing of our western culture that regularly sends older people into lockdown. At least we have the luxury of being locked down in our own homes, with our pets, our gardens, and our creature comforts. Can I implore you to try and contemplate for a moment what it must feel like to have to give up your home, have your dog put to sleep, sell your car, give away your furniture, photographs, beautiful linen and most of your clothes to move into a small apartment of room in an old age home?
Think of your own uncertainty, the fear, the anxiety around this Covid-19 virus. How it makes us all feel helpless. How this thing has made us feel desperate. Can I implore you to during this time try and imagine what it must feel like for someone living with dementia to be diagnosed. Most people know as much about dementia as they know about Covid-19 when they are diagnosed. And then they start trawling the internet, reading article after article on the horrors of the disease. Contradicting anecdotal fear mongering horror stories of the disease that rips away your personality, turns you in a wandering blithering aggressive idiot that smears faeces all over themselves. A disease that does not have the mercy to kill you as quickly as Covid-19…oh no, this one will trap you for years and years. It will grind away at your soul and scrape away every bit of your personhood. That is what they say will happen…
Imagine the fear, the anxiety, the desperate plea for help, and not finding any of it. The best advice you would get is to sell up and move into a care facility with a good “frail care”. The end. Oh no, sorry, not the end. The beginning of hell.
If this virus could teach us anything, I hope it teaches us about our own mortality. I hope it teaches us about our own precarity and vulnerability. I hope it teaches us to see what so many people are faced with when a system fails them, when society shuns them and their reality changes through a medical diagnosis. Please take this time to ask yourself the question “how would I wish to be” if ever a diagnosis of dementia becomes your reality. Take this time to consider your opinions of people living with a different ability, of your role in creating an inclusive environment for people living with dementia. Take the time to prepare yourself, like I hope you are protecting yourself against Covid-19, for your own ageing. It is never too late.
And while you are sitting in this temporary lockdown maybe feeling sorry for yourself, sipping a glass of wine with your dog on your lap, imagine the reality of thousands and thousands of people who have been in lockdown facilities in your own city or village, simply because their minds have changed.
Rayne Stroebel MSc (Dementia Studies)
+27 82 455 5300 rayne@mindsmatter.co.za <mailto:rayne@mindsmatter.co.za> www.mindsmatter.co.za <www.mindsmatter.co.za/>

How to grieve

I have said this before – I have no idea how to grieve. I don’t even know what to feel or think about how I feel or what I think at the moment. Somehow I feel that my grief is not “as bad” as that of some other people I know. My friend’s partner committed suicide – a beautiful, successful man in the prime of his life, gone. My aunt’s family – she was run over by a truck in front of her husband. From a happily retired couple to a family in raw grief. On the one hand I feel so blessed – my Father lived an incredibly full life right up to the day he had his stroke. He did not suffer, he had no pain, he was surrounded by the people (and dog) who loved him. He transitioned so peacefully.
Grieving is a way of celebrating and honouring the Life of the person. That makes sense to me. Well, sort of. It is not that I want my Father back, that I feel cheated, that I have unfinished business, that I feel I missed out. It was not like we spoke on the phone every day sharing stories. He always called me when he went biking, almost like he was “reporting” in. In December I stayed with my Mom for the week that he went riding. He deeply appreciated it, and said so. We somehow knew where we stood with each other. In 54 years I never had an argument with my Father. That is not to say that we never disagreed. We just never argued or fought about our differences.
At the life celebration I said that as a child I often wished that I had an “ordinary” Father, and I know that my Dad often wished he had an “ordinary” son. In many respects I took on a fathering role for my parents, which both him and I resented in a way. Yet, that was the way the dice fell. I took care of them. I suppose the confusing part is that while I am so at peace with the fact that my Father died, I am so aware of the big gaping hole that his transition has left in our lives. Literally – a big hole, an empty space. Like a house without furniture, one is suddenly aware of the emptiness, the hollowness. You see the bare walls where all the memories were hanging, now just a nail in the wall, faded paint around the outline of the memory.
I keep on looking at his photographs. I grew up with these photographs. They were hanging in my grandparent’s home all those years that we visited them. Thanks to Facebook we scanned them and used them to celebrate birthdays and anniversaries. Now it feels as if I am seeing them for the first time in 54 years, maybe because they now represent not him in person, but his memory. Suddenly I am aware of how good looking he was, how tall…
In hospital I put my hand on his chest to feel his heartbeat. I was amazed at how firm his pectoral muscles were – must be from holding the handlebars on his bike. I held his hand, looked at how well manicured his nails were. I remember how he came from word every day, spending the first half an hour cleaning up. As a mechanic his hands were always rough, but perfectly clean after he scrubbed them with a special cleaning agent and cleaned his nails. Every evening.
Now that his physical presence is no longer here, it is the memories of him that are present. I cannot help but wonder how much my Mother remembers about him, about their life together. To lose him and the memory of him must be so terrible.
I held his hand, possibly for the first time in my adult life. The first day after the stroke he could still squeeze my hand with his right hand. The left side was paralyzed. I put his left hand in mine. It felt warm, calloused. He worked with his hands all his life. He wrote with a fountain pen – an elegant script. I Remember that I liked his signature on my school report. It looked neat and professional. He was a mechanic. The hands that could hit a golf ball on a single handicap, hold a fishing rod, ride a bike through rough terrain, drive a lorry and front end loader. Give a moerse hiding. These hands lay lifeless in mine. Lifeless but warm.
The intimacy of death.

A private affair

Should our grief be private? Am I being narcissistic writing about my grief? Death has become a clinical procedure. (Strangely – so has birth, a clinical, medical procedure.) Am I exposing my Mother by writing about her grieving on Facebook? Too much info? Enough with public display? Why do I feel the need to do this all in writing, in public?
The week before my Father died I attended a “Midwifery of the Soul” conference on death and dying. Little did I know what I was about to go through only a few days later. Was I prepared? Equipped? Hell no! Was their support in the healthcare system? Hell no! The curtains were drawn, that’s it. Let’s hide this, pretend that it is not happening, make it invisible.
Almost everyone that surrounded my Father pretended that this was not happening. Not a single person could voice the words “your Father is dying”. Nope. They offered physiotherapy, speech therapy, occupational therapy, saline drips, nasogastric feeding, catheter. But not a single person would acknowledge that his brain damage was such that he would not survive. The best they could offer was to prolong his life, regardless of the fact that he would have zero quality in it.
By day three I started saying out loud “my Father is dying. You can say goodbye to him if you wish”. “Please do not tell my Father to get better, he is dying”. I said it out loud, not in a whisper. I said it loud so that he could hear me saying it. For me it was a show of respect, of acknowledging his transition. I told him that it was ok to let go, that everything is taken care of. I told him that I will take care of my Mother and his dog. I promised to take him home so that he could be with his beloved Sally, his dog.
We need to talk about death. And we need to talk about what it does to us, how it makes us feel. And in talking about death we learn to talk about Life. The more we contemplate our own mortality, the more we learn about our living, in the here and the now. And when we look into the eyes of our ageing parents, we see how precious our time is with them. And the. We know about grief, about loss, about love.
I want to share my grief. I want to show my grief. Not because I think it should be a public display, but because I deeply and strongly believe that we should stop this disconnect, this medicalization of the mystery of Life, albeit birth or death, or the journey in between that often brings as much joy as it brings sorrow. My grief I want to share for a Life lived to the fullest extent, but also for lives not lived. For every person living with dementia who battles to Be, who is marginalised by their disease, shunned from the public eye.
I want to share my grief to share the vulnerability. I want to open the curtains on ageing, liver spots, brain damage, strokes, dementia. For it is when we dare to look this part of Life squarely in the eye that we become authentic. My Father’s death was the most beautiful gift that a man could give his son and daughter and wife. To conclude a relationship spanning over 58 years, of which I shared 54, and Sally the dog 13.
I want to share my grief to encourage a closer look at Life. But mostly to give words to something that leaves most of speechless, to articulate the inarticulate, to give a voice to the silence, shine a light on the dark night of the Soul. And to show that I am not ashamed or even shy of my inability to comprehend the greatest mystery of Life, this thing called death.

The weekend

The weekend is grating, like fingernails on a black board. We somehow find conversation hard, so we go for drives. There are only so many routes in Witsand, the small seaside village where my parents lived, and where now my Mother lives alone. This was one of their favourite pastimes, going for drives. With Sally the dog.
My Mom loves for the drive to go through the “Ooskamp”, the so-called “coloured” caravan park that now has been turned into a little neighbourhood of small houses, built one on top of the other. Every time we drive past the last house on the left, she says “apparently this is the most beautiful house in the camp”. My Dad once went inside the house and told her that. And she points out Johnny Gans’ house. It is called Gansnes (goose nest). He died suddenly from a heart attack a few years ago.
We go for tea at Jana’s shop, supper at Anchorage on the beach. And another drive, this time to Oysterbeds. She comments on all the fishing boats out on the river, the trailers waiting on their return. Saturday is windstill, very rare for Witsand. We sit and watch people walking their dogs on the dunes. Some visitors come bringing more muffins. I make tea. They talk about their arthritis.
The house feels shrouded in sadness. We laugh at the dogs playing and seeking attention. But underneath there is a layer of sadness. Over the conversation is another layer. She still talks about him in the present tense. How he loves saying at 17h30 “the bar is open!”
She wants us to take some of his clothes. I unpack all his clothes on the dining room table. I know every shirt, every jersey, every pair of shorts. His sleeping t-shirts and pants. There is nothing I want to take – more than half of it is mine that I passed on to him. I know she wants us to take something. I pack it all back in the cupboard and tell her to give it to needy people.
I fill out the Sanlam funeral claim form. His ID photo is so real, lying next to his death certificate which is so unreal. We make more tea and eat muffins.
Sunday morning I get into bed with her with all the dogs. I tease Sally – she loves it and pretends to be vicious. “Jou Pa terg haar net so!” We go quiet again, drink out tea and look out the window at the dunes. I see how she struggles to find conversation after that statement.
We have breakfast. I sit on his chair, say grace like he always did. More tea. We wash the dogs. Brush them. I know we need to start packing. “Is julle dan al op pad?” I help her up out of the chair, holding her hands. She looks deep into my eyes and says “gaan julle my saamvat?” I cannot speak. We walk to the car holding hands. For 58 years my Dad always held her hand when they walked anywhere. Always opened the car door for her. She stands at the front door. I hug her – she is so fragile. I feel her shoulder bones sticking out when I hold her as tight as I can, knowing that she hurts so easily. I cannot say goodbye. So many times we drove away from home with Mom and Dad standing outside, waving. Now she stands alone. She cannot wave her hand above her head. I cannot look in the rear view mirror, I just wave as we turn the corner.
We travel back to Cape Town in silence. Stop for coffee in Riviersonderend. I phone her when we get home. “Ek mis julle al klaar” she says. My heart is shattered.

The bike

I unlock the garage with trepidation. Somehow I feel as if I am doing something wrong going in there, never mind taking my Dad’s bike for a spin. I have done this before, nut only if I had asked his permission. His bike was his sacred possession. His pride and joy, his freedom.
The key is still in the box on the back of the Tenere. I open it to find his gloves and his balaclava. He bought a new helmet a few weeks ago – a red open faced helmet with a flip down screen. There are six helmets in the garage, several pairs of boots, all his gear. I lock the top box with everything inside.
The bike is much bigger than I thought, and much higher and heavier. How he got on and off I don’t know. Getting my leg over the top box is not easy. He was 84. I have to smile thinking of his determination. Everything is still the way he left if on the Thursday – the next day he had a stroke. A week later he died. Yet, here in the garage, nothing has changed.
I put on his helmet which fits perfectly. There is a little “moon bag” tied to the handlebars with cable ties. It is worn from sun and dust. I unzip the first compartment – a tyre pressure gauge and some “Lert” tablettes. My Mom always insisted that he drinks these to stay awake on long trips. The second zip reveals patch and solution, the third insulation tape. My Dad loved modifying things.
The bike starts immediately, reverberating in the garage. It is so loud and powerful that I actually get a fright. I slowly push it back out of the garage. Sally, his dog, immediately recognises the sound of his bike and starts barking frantically in the house. I pull away gently but can feel that this thing has power. I can just imagine my Dad opening the throttle on a quiet road…
I do a quick spin through the village. I am not dressed for the open road. He would never get on the bike without his gear, another lesson I learned from him. Not even just going to the shop. Never. You do not want to come off a bike wearing shorts and a t-shirt. I am overcome with emotion as I smell my Dad when I flip down the screen of the helmet. I feel his presence.
I put the bike back in the garage exactly as I found it. It must stay there for a while longer. It is too soon to take it away. Somehow it doesn’t feel right. My Mom sits staring out the window. I say to her how strange the house feels without him. “You have no idea how I miss him” she says. I suppose I don’t. They have been together for 58 years. Even though he was a quiet man, he had a huge presence. You noticed him when he walked into a room. Now we notice his absence. There seems to be a massive chunk taken out of our world.
I try to ascertain from my Mom how she feels about living in the house without my Dad. “People ask what you will do now that Dad is gone”. “What do they mean?” she asks. “Like will you stay on in the house, are you not afraid to be alone downstairs?” (Maritha her companion lives upstairs.) “Well where else would I go?” she asks, puzzled. “Well I think they assume the old age home…” She looks out the car window. “Over my dead body! I will stay right here!” Well that settles that then, doesn’t it?
I go to say goodnight to her. She sits on the side of the bed with Sally next to her. She looks frail. I say goodnight. “You can give me a hug” she says. My heart breaks into a thousand pieces. She has never asked me to hug her. A new journey is now starting for us, building a new life without my Dad. I have no idea how it will turn out for my Mom.

Home again

I have always referred to my parent’s house as “home”, even though it is not the house in which I grew up. Having both parents alive at the age of 54 was always something quite incredible for me. We loved coming “home” to Witsand. And now we are home again, but my Dad is no longer here.
There is a strange silence in the house. My Mom seems quiet. Sally the dog is ecstatic to see us. She always is. As soon as she calms down the silence sets in. Somehow we don’t have much to say to each other. My Mom tells of more people who visited. The silences in between grow longer.
My sister “sorted out” my Dad’s study. Mom gave some of his clothes away. Most of his stuff is still in the cupboards. Somehow I have not managed to do any of the admin. I started filling out the Sanlam funeral policy claim, made a mistake and threw the forms in the bin.
At ceramics someone asked me if I am grieving. I had to think. “I don’t really know how to grieve,” I said. What am I supposed to do/feel? I go through the days aware of the fact that I am in limbo. I sit and stare out the window, drive very slowly into town, weed the veggie garden, hang in the hammock.
We decide to go for pizza. The sea air is chilly, I put on one of my Dad’s jumpers. I can smell him on me. I see his photograph on my Mom’s cellphone. The two framed photographs of him on his bike. His earphones on his chair…
It is the finality that is incomprehensible. I have complete peace with his transition. I have no regrets. I suppose it will take time to fully come to terms with the reality of his transition. What it means for my Mom, for us as a family. How it will change my role.
I decided to keep his bike. Somehow I cannot get myself to put on his helmet to take the bike for a spin. Somehow his bike is the most personal belonging of my Dad’s, almost a sacred symbol of the man that he was, the enigma. Maybe tomorrow I will have the courage. For now I will just sit with the silence.

Another Monday

And then there is another Monday, now back at home. The swimming pool is green, the vegetable garden is covered in weeds, and the desk has a layer of dust. I have two weeks worth of work to catch up with. And now an added responsibility of sorting out my Father’s affairs.
I sit at my desk. It is a mess to say the least. Sanlam forms. I hate filling out forms. Why on earth do they never make the blocks big enough to actually fit the writing? And the amount of rubbish they ask for – what on earth does it matter? I realise that I am tired and irritated. The neighbour’s bloody leave blower does not help…
Limbo. “I feel that I am in limbo” l, I hear myself saying to friends who ask me how I am. I decide to google what in limbo means:
Definition of in limbo. 1 : in a forgotten or ignored place, state, or situation; orphaned children left in limbo in foster homes and institutions. 2 : in an uncertain or undecided state or condition.
Well, there you go. I am in limbo. I am not sure of my state or my condition. Not quite orphaned. Almost! And yes, an ignored place. Because most of us insist on ignoring death. As much as we are surrounded by it, we somehow choose to not engage with it. (As an aside, our Gardener was murdered on the same day that my Father transitioned. I have chosen to not engage with his death, simply because I have no space in me head for it. I will deal with it later. Like maybe tomorrow. At the same time our Housekeeper has disappeared. I also cannot deal with that now. I will deal with later, after dealing with the murder of our Gardener. Like the day after tomorrow, being Wednesday. By then I hope to have more headspace.)
Not every death is a beautiful transition, I know. We do not always get the chance to process, to grieve, the say goodbye, to make peace. Some deaths are sudden and brutal. But if we are alive, which we all are, we all have the opportunity to contemplate our own mortality. Difficult as it is, we can actually sit our asses down and think about the fact that we are definitely, absolutely going to die. For sure. For real. True story. Not fake news. You, yes you, are going to die. Face it. Talk about it. Discuss it with your loved ones. Make a will. Do an advanced directive. DO IT!
A death like my Father’s is also a reminder to live properly. To take deep breaths (it was dreadful watching and hearing his breathing becoming more and more shallow.) To look around and see the beauty of the mountains and the ocean (his eyes never opened again after the stroke. I lifted his eyelids – his eyes were dull and lifeless). To talk to our loved ones (he did say a last “thank you” on the day after the stroke when I told him I will come back the following day).
The finality of death is perhaps what inhibits us the most. We cannot fathom that finality, we cannot comprehend its power. We object to our finiteness. We cannot and do not want to consider that this candle might be so brief. Perhaps this is my state of limbo, having to reconsider the way forward. Perhaps I need to rethink my Being here. Now that I have experienced death so real and so close, I should reconsider my own journey. But for now, I will be in limbo.

The end

Somehow I am not ready to tackle life. There is a mountain of emails to be answered, two weeks of backlog on work and the admin around my father’s affairs to be sorted. And yet I find myself on the couch staring at the mountain.
I am not sad. And I don’t think I am grieving. Maybe I am. I do not wish that my father did not die, that would be silly. And I don’t wish that he had died in any other way, in fact I am so grateful for the way he transitioned. I am simply quiet. My world has shifted on its axis and will never be the same again.
The finality of a death is one thing, to carry on after that final transition is difficult. Not impossible of unbearable, just difficult. Having to talk about my father in the past tense is difficult. He was. He did. Instead I still want to say he is, or he does. Imagining our home without him is difficult. Not saying to my mom “love to dad” after our phonecall. Not having him sit in his big chair with Sally with him is strange. Seeing his bed that has not been slept in. Wearing his watch.
I suppose this is what processing means. Being quiet and letting all these thoughts, feelings and emotions churn away inside, hoping to get to a sense of essence. When all the thinking has gone round and round all that will be left will be some essence. Like a jus that has been reduced to something pure and simple. All the evaporation of emotions will leave behind a Knowing.
I am really touched by the number of people who have followed me on this journey. Whilst it does feel slightly narcissistic, so many people have thanked me for sharing such private emotions, saying that it helped them to give words to feelings where they had none. Whilst I know that I can become quite preachy, I am astounded at how many people do not want to talk about death. Even more people who don’t have an advanced directive or living will in place, not to mention an up to date last will and testament.
I will not preach about this again, but FFS get it together and sort it out? It is an absolute curse to leave your loved ones to make decisions on your behalf without your guidance and clear instructions. Do it! Sit down, talk about it. Discuss all the different scenarios. Be bold. You owe it to those around you. Then make sure that everyone knows where the copies are of your documents.
Thanks to this I have absolute peace about my father’s transition. And eternally grateful that I could step in for him when he could not make his wishes known. If we had not known what he wanted, he would have been alive now, bedridden, not able to control his bladder or bowel, with a nasogastric tube down his nose. He would have needed 24 hour care, with no quality of life.
This is my last chapter of this journey. Tomorrow I will get back behind my desk and tackle the world again. But I will never be the same person again. I have grown so much, in fact I know that I have also transitioned in a way. Having been through this journey with my father is like an incarnation to a new life. A new beginning. I do believe that there cannot be a new beginning without and end.