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Towards The End

My dear friend has been given about fourteen months to live by the oncologists. It is absurd. As we have drinks in Noordhoek overlooking the beach, it is hard to believe that this beautiful woman, so full of life, always ready to share her wicked sense of humour and make us laugh is dying. Yes yes, I know we are all dying, but not all of us have a date. She has a date. I feel so immensely sad and frustrated and helpless. Why the hell can they not cure this cancer? How will it progress?

We have always shared a passion for aged care. We have had so many conversations around death and dying, caring for people living with dementia, assisted living, etc. She has challenged me to think deeper and deeper and to question the many preconceived ideas that I have. And now she shares a new insight. A week ago, she was in such a bad way that she thought it was the end. She was at home in bed, feeling, well feeling like death. Looking around her home, seeing a shirt that she was supposed to put in the cupboard and did not, she became aware of her attachment to the things around her. The things that tell her story, that de ne her world, that give her comfort. The things that represent this life here.

She and I have so often talked about a dignified death (of other, old people in the Care Home). Suddenly, thinking that her own death is imminent, she realized that she did not want to die at home. That there are too many things that she feels an attachment to, that she does not want to leave. Things that sadden her to have to say goodbye to. And contrary to all our conversations over the years, she realized that she would rather die in a hospital, where others will take control of the process of dying. That is the hospital she can let go, where she does not have to be in control, and where she will not have to make decisions. Or feel that she still has to put away that shirt…

I have spent so many years thinking that I know what ageing is about, talking about death and illness, quality of life and meaningful engagement. I have talked myself into believing that I am some sort of expert in my eld. Sitting there listening to my friend, I suddenly know that I know nothing! I had read thousands of books and research articles; I have made it my business to study ageing and dementia. And yet, speaking to my friend I am (again) realizing that there is no gold standard, no one recipe or pathway, no standard procedures. Unless you are in that situation – albeit the process of dying, of living with dementia, of feeling the loss of function or the aches and pains of an old, tired body – you cannot possibly begin to know what it is like.

We need to stop and listen to the voices of the true experts, those who are at the coal face. Sit still long enough to truly hear their stories. Then, and only then, will we begin to honour and respect and understand person-centred care, asking the question “How do you wish to be?” Then, and only then, will we be open enough to really BE there for someone who is in need of our support. If we can stop, listen, hear, and then be willing to act accordingly.

I begged my friend a few weeks ago to make an advanced directive, in which she must leave instructions to not take her to the hospital when the end is in sight. We spoke about this at length. I now know that that was what I wanted. I do not want to see her die in a cold and clinical hospital, surrounded by medical personnel who do not know her. I wanted to be with her at home, surrounded by the things that tell her story. I now know that those things might at the end of the day not be important to her and that it might be easier to detach and let go in a clinical setting where people are not emotionally distraught at her death. This was so dif cult for me to hear. But I am so glad and feel so honoured that she shared this with me. I respect her so much, and of course, I will respect this wish. I drove home over Chapman’s Peak blinded by tears. My friend, my mentor, the one who never thought twice to challenge me, to tell me off, to put me in my place. I cannot imagine her not being in my life. And then again, I realise that this is about me. I now want to learn how to truly be a friend who will be there for her.

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