jmgoyder

Most Dementia care advocates/experts, and organisations, seem to agree now that ‘going with the flow’ is a better, kinder way of responding to people with Dementia. For example, when Anthony asks me to find the chainsaw so he can cut wood for the fireplace, I say yes, of course; and when Anthony asked Ming yesterday to move the calves to a different paddock, Ming said yes, of course.

I was really proud of Ming yesterday because when he came home (we’d just missed each other at the nursing home), he said that Anthony mistook him for a nephew and Ming had to say, “It’s me, Dad – Ming, your son.” I guess that’s an example of not going with the flow but Ming did it gently and acknowledged to me that he and his cousin do look alike. I was proud of him for not being upset and for being so gentle in reminding Anthony who he was. I was also proud of him for agreeing to move the imagined calves that Ants often sees in the grassed area outside his window.

Going with the flow in terms of what Anthony says, or tries to say, is easy for me. I am getting better at mind-reading when he is stumped for words, when sentences are impossible. I know him so well, who he was, and who he is now with the Dementia, so I know how to reassure him that his mother and deceased siblings are fine, that the dairy is functioning, that there is plenty of money in the bank, that Ming is growing up fast (Ants often thinks Ming is still an infant).

But going with the flow for me, personally, has recently become extremely difficult and traumatic due to Anthony’s sudden deterioration a couple of weeks ago with the dysphagia and TIAs. My grief was acute because I thought he was about to die. Then, when he didn’t die, my emotions became all mangled and I became consumed with anxiety and uncertainty.

I spoke with my fantastic psychologist this morning about how frustrated and exhausted I was with not knowing when Anthony would die. Of course I already realise that, despite him being in the last stages of everything now, it could still be a long time.  She suggested just focussing on each day as it comes, not having any expectations, and re-finding my own identity, the latter of which was something my mother also said to me the other day.

As someone about to facilitate carer support groups, I felt the need to figure some of this stuff out but that’s where the ‘going with the flow’ idea caught me as I fell. There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.

I have been feeling so weak and distraught lately – even disorientated – but the volunteering jobs have been like a gift! Going with the flow….