There are some moments in our lives that just stick with us. One of mine was on a Spring afternoon in 2006. Abigail had just finished breastfeeding and was fast asleep on my chest. Emily, at that stage two and a half, lay curled up in my arm. I could smell Abby’s sweet milky breath and hear Emily’s innocent little snores. I had an overwhelming sense of peace. It cannot really get much better. In my arms, at that moment, I held my entire kingdom.

Eighteen years later I’m sitting at the Pieter Toerien theatre waiting for the legendary Karen Zoid to come on stage. On each side of me are these splendid human beings that were in my arms not too long ago. I feel the same overwhelming love for them now as then, but have had the honour of delighting in these fantastic creatures with opinions, ambitions, eccentricities, humour and loves.  Apparently they say (who “they” are I do not know, but here I am quoting them with due credit) that the mother-daughter relationship is the most complicated human relationship, but also the most rewarding.

In her show, Zoid speaks about her own mother. She died when Karen was nine. I want to weep thinking about that, not just for Karen who deserved to grow up with a mom, but for her mom who lived with cancer for seven years, knowing each day that she might not see this magnificent child of hers grow up. She tells the audience that she always looked for a letter from her mom, hoping that she left something behind which might have guided her, prevented some mistakes, maybe a physical reminder of just how much she was loved, but there was no letter. There was no video, no tape, absolutely nothing. Yet another loss for a nine year old girl who just wanted her mom.

I get it though. We see this with the young moms who come in here, fighting to stay alive, absolutely refusing to stop medical treatment, committed to stay alive for a matric dance, or a child’s graduation, or a birthday. When we sit in the family meetings with these patients, their entire focus is on the desire to recover and they dare not, for a minute, spend energy on anything thatis not focused on healing. Maybe if Mrs Greeff (Zoid’s mom) wrote that letter, it would have meant in her mind that she had given up? Maybe she needed every cell in her body focused on  survival? Maybe the fact that she did not leave a letter behind is a testament to how much she wanted to be there in person?

Last week one of our younger patients, Sally, died of cancer. I say she was our patient, but she never actually got to us.  In Sally’s mind she was going to get better. I was touched that all the doctors ( yes even the oncologists!) respected her enough to tell her the truth. There was no hope. There was no cure, no surgery, no wonderful essential oil or diet or chemo that would prevent her death. Everyone accepted and understood this, but Sally could not.  Everyone told her to come here and have a gentle, beautiful death surrounded by her loved ones, our gardens and obviously, the gracious cat, Meenie. Sally was encouraged to have conversations that were needed, to forgive and be forgiven, to say thank you, to wrap things up. Instead, Sally used her last bit of energy angrily fighting with doctors and family members. The death doula helped her to start a letter to her children, but she did not finish it.  She was repeatedly picked up by an ambulance and taken to hospital, subjecting her poor body to more and more invasive treatments. She died, even sooner than doctors expected, and left a trail of trauma on top of the grief.

Was Sally wrong to want to fight so hard?

Of course not.

Society is wrong… again (rolling eye emoji). I think western civilization failed Sally. We need to start talking about death and dying. It needs to be an open topic at the table. We need to tell people that death is seriously nothing that you need to fear (and can we invite some doctors to these damn tables and tell them too? Tell them that you have not failed your patient if they die. So far, not one doctor in the history of man has kept a patient alive indefinitely – it is okay if people die dudes! It is not okay to keep treating people and rob them of quality of life). Sally should have known that it is okay to die, and that it is okay to let people walk that journey with you.

We have another patient who is an ICU doctor. She has days left now. This morning around 6:30 I popped in to see her. Her husband (who has been staying with her in the same room since her arrival) was sitting in his dressing gown drinking coffee, holding her hand and looking out over the pool. At the bird feeder, there was a love bird fighting with a mossie (sorry, we have mossies in our gardens, sparrows go to Bryanston and Sandown). He looked at me and said, “It is so peaceful here”. We talked a bit and he told me that before his wife arrived, she was terrified. Her only reference to a palliative centre was grey walls, noise, cold hallways and bright lights. She was a doctor for 40 years, and she did not know that there was an alternative to a cold clinical death with beeping machines or an underfunded hospice filled with old donated furniture and smells of mothballs. How lucky are we that we can give her this gentle beauty? And to her husband. How wrong that Sally could not experience this too.

Anyhoo, I digress.. back to the epic Karen Zoid concert. (Her concert was indeed epic. But so is she. What many people do not know is that she is highly intelligent and could actually be a stand-up comedian, and unlike other Afrikaans women, this chick is just getting prettier all the time. Can you pick up that I am slightly in love with her?) Because of the fact that young Karen did not get the letter, she wanted her son to have the reminder she so desperately needed in case she died. She wrote him a song about what she wants him to be know for when she is gone. Go listen to it. It is beautiful. The song reminds him and all of us of what is important. In a nutshell: live generously and humbly, don’t ever lose your ability to see the wonder of our world, don’t give up, be yourself, be acutely aware of who you are and stay true to that, go see beautiful places, treasure your relationships, when life gets too much, go help others, love unconditionally, do what fills you with joy, and do it abundantly so. (The song’s name is As Musiek begin speel: https://youtu.be/nKj-e2mIp4Y?si=eNb3iJTDNwxkk0xT)

 

We should all do it (says me who hasn’t, I just write the blog guys, I don’t get life right… #don’tfollowme). We should all fill in our advance health directives ( link below), say what we need to say now, live our lives now and not be like Sally that when the time comes, we find that we cannot let go.

After the concert we got an Uber home. We were high on endorphins and  got our poor unsuspecting Uber driver from the DRC to blast Zoid songs on his car radio. This moment is very different from when I was holding my precious daughters 18 years ago, but they are still my everything, my entire kingdom and may they always know how deeply I love them and always will.

 

Some helpful links for you and your loved ones around advanced illness and the care that supports this. Also attached conversational guides and an advanced health directive ( a document to guide those who love you to make the decisions you would like them to make when you can not )

 

https://palprac.org/wp-content/uploads/2024/03/Advanced-Health-Directive.pdf

https://palprac.org/wp-content/uploads/2024/03/PALPRAC-documentation-serious-illness-conversation.pdf

End-Of-Life Care