I’m writing a novel based on the illness experience of a close relative. Throughout the process I have also had to deal with the effects on me as I reflect on my relative’s experience. This is an emotional journey which often overwhelms me and up till now I have not paid attention to that. It certainly explains why I am frequently exhausted both mentally and physically. It doesn’t help that I also have to write a critical piece which involves research into the illness and how best it should be handled. The research has thrown up how often I do exactly the opposite of what is recommended. So as well as exhaustion I have to deal with guilt at my unhelpful and in some ways damaging actions. That they arose from ignorance and well meaning doesn’t mitigate the guilt. Added to this, my excuse for no longer visiting my relative is that instead I am doing the thing I do best: “writing” and this is my contribution to her “care”. Yes, she did say “I hope you get some writing out of this hideous disease” but still the guilt lingers.

Why is it so difficult to visit her? My brother visits every day, sometimes twice a day. The relationships are different. He is her elder brother and says that now she has dementia it is as though she is “my little sister again”. She was always my older sister (by seven years) and in many ways she was a mother figure to me. A particularly benign mother figure but one with a degree of authority. I went to her for comfort and for advice about how to operate in an adult world. She was my champion, my encourager, my solace. I have read how difficult adult children find the switch from being cared for to caring for their ill parent. For me, I have to toggle between keeping my relative safe and not infantilising her, always with the sensation that the sister, who occasionally was exasperated when I acted in an unreasonable way, might criticise my handling of her situation.

I can’t get feedback from my sister because she has the “flattening of effect” (a symptom of the disease) where she does not register negative or positive feelings with facial expressions. I want to “please” her but don’t know how. I want her approval.

Whenever I had difficulties, my sister was the first to help, to give me money, buy me a dress, express contempt for someone who had chucked me, defend me from another’s hostility. I desperately want to do for her what she used to do for me.

But I feel helpless. 



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