Ultimately – it’s about pain
Not always in a bad way, though. The sad, dull pain of absence I had felt for the years I was prevented from seeing my Dad was eclipsed last year by the joyous pain of being able to spend so much time with him as a carer and to ensure he could reconnect with so many of his old friends. All of us in some way shared some difficult moments with him: we got angry, weepy, silly, wistful but – worst of all – at times we felt completely and utterly helpless. We shared some extremely precious moments – especially when his sense of humour came to the fore. His reaction was classically “Dad” when I confirmed that I had successfully been accepted into the MSc African Studies course at Oxford… by St Hugh’s.First elation and then just a tinge of exaggerated fake disappointment “oh – not Trinity, then?”
Being a carer for a parent carries a sense of having come full circle but at the same time, you have to recognise that there will be no long term gain in the way that there is with watching a child become more and more independent. The trajectory is not the same – it will inevitably be downwards. The only question is: how steep?
Mornings would often be his most confused time. He would sometimes insist that I update him on “our children”. Where were they? Were they well? Who was caring for them? That we were his first thought on waking was reassuring but I realised then that he was losing some level of control – things were starting to slip away at the edges. At least I could reassure him in return: “We’re doing just fine, Dad. Vu is well and she will see you soon. I am well and here with Antony, we’re doing OK, Dad,” and he would relax – bringing himself gently back into the moment.
Later in the day, he would often be much more engaged, and, although he might not always participate fully. He would enjoy listening to music, brightening up massively when Miriam Makeba came on the radio, and conversations and would sometimes interject with his own observations or comments. When we could see he was more engaged, we would get him doing physio and working on his mobility. Those days, it felt as though he would keep going for much longer. Then there were other times when he would suddenly just shut down – and worse were the times when his illness would prevent him eating or drinking. The most painful thing to watch was when he would take in a mouthful of food or drink but then he would freeze and just hold it in his mouth until he choked. Those days were tough – he couldn’t provide the control to spit it out; he couldn’t swallow (possibly some dysphagia, which is common with dementia patients); but neither could we do anything to help and we would just have to try and keep him safe.
In our case, his decline turned out to be much steeper than hoped. In the end it was extreme, and I am not sure whether he was happily letting go, having been able to reconnect with his family or wearily giving up after going through so much. I know that he wanted ultimately to return to South Africa but he also wanted to not to be a burden. He suffered one of the worst illnesses I can imagine for someone like him: a dementia which allowed him to retain a lot of his memories – he never forgot who we or even occasional visitors were – but which deprived him of control almost completely at times. His capacity to live was ultimately thwarted by the illness of his brain, which prevented him from taking in the nourishment he needed to stay alive and fight infections. There is no way to be angry at a disease like that, though. My Dad was unable to do anything about it and we, as family and carers, were helpless in the face of its destructive influence.
Being a child and caring for a parent is tough – that parent-child relationship often played out when my Dad would shout at me for trying to get him to eat more. But that rebellious child in me wouldn’t back down easily – and therein lay (at least part of) the rub! I was a stubborn, bolshy, opinionated teenager (no surprises there – where did I get that from? Actually, it probably came from both parents, to be fair – Mum had her own feistiness as her family fondly remembers!). So of course we had our share of clashes as I was growing up. I suppose that just as he was trying to make me more able to cope with the world growing up, I was trying to keep him resilient and more able to fight infections so that we could bring him back home. Should I have tried harder to push him to keep going even for a few more days? Would that have been crueller in the long run? There is only one answer because it’s what I did in the end – I accepted that there is an end to life and we all tried to ensure it was as peaceful and pain-free as possible.
My Dad has often not been good at addressing difficult or emotional issues head on, though, and this was terribly apparent when he was more lucid. He would prefer to talk in metaphors or around the subject. It was irritating at the best of times but more so when dealing with health professionals, who are often just looking for a straight answer! And so, I would just as often be an interpreter as well, having to explain his jokes or turns of phrase. For example, “there’s something rotten in the state of Denmark,” was his euphemism for needing the loo. But one of the most important talks we had was when I was questioning bringing him to the UK. He had physical strength, but I wasn’t sure whether it would be too much for him. He could clearly see that I was distressed, and he said gently, “Don’t worry. You are doing the right thing. You have done the right thing and you will do the right thing, I know,” Those words meant so much and have kept me going the past few weeks. He had often said in the weeks leading up to his coming to the UK, “I just want whatever gets us all to be together again,” although the unspoken part was “one last time”.
I heard so many people talk about my Dad’s many amazing talents and achievements – and his humility only makes this more important. We knew how playful and loving he could be, but it has been important to hear from others how he touched their lives. He served his people and his country in fighting for freedom and, as an active member and representative of the ANC, ensuring that the world did not ignore the plight of those struggling under Apartheid. Later, as South Africa’s Ambassador, he ensured that South Africa’s representation in the world was dignified, deliberate and diligent. In both of his postings, I remember the staff fondly talking about how he made the role his own – he took it on as a full-time job and did his homework. Several times, they remarked on how unusual it was for ambassadors to be in the office at 8am and staying for the whole day!
I will miss so much about him, but in many ways, these past few years without any access to him have also given me a template for how to survive this. I wish my Dad had spent more time to help me learn better isiXhosa (although he was impressed at how much I had managed to pick up along the way informally) and I wish he had taught me the history of my family and his struggles in particular. I wish he had shared more of his stories – my sister and I had asked him so many times to write a memoir – and it is a shame that so many of these will be lost. But most of all, I will miss the small things, like never again hearing anyone call me “Me-tali-toe”; his beautiful singing and funny dancing; his cheeky wink and – of course – his extreme dimples!
Rest in Peace, Dad.