When I was a teenager my mum used to tell the story of a patient she nursed, who was deranged. He used to say repeatedly “What’s donuts?” To which he’d reply to himself “shit with sugar on top.” She told me this story repeatedly and we laughed a thousand laughs at the idiocy of such a weird thing to say, despite the fact the poor guy was bonkers. It seemed insanely funny then… but now it’s not so amusing because it is a poignant reminder of my real life shit-with-sugar-on-top; caring for my mum with dementia.
My mum, a former registered nurse, is now a dementia sufferer. I am her middle-aged, doggedly dutiful, often stressed and emotionally-drained daughter. For nearly 2 years my involvement in her life has been constant and all-consuming. My young son often quips “You love your mum more than me” and my husband has said “you spend more time with your mum than with me.” In many ways caring for someone with dementia is like having a baby again only it is 10 times more stressful.
The thing about dementia is you don't wake up one day feeling a bit off and go to the doctor and get a diagnosis and a script for antibiotics. The symptoms slowly start to manifest in ways which initially you just put down to old age: being forgetful, misplacing keys, purses, money. Then the symptoms get more sinister, like paranoia and saying randomly mean things to your loved ones. For me as the daughter and only living relative who is present, it is without doubt the most challenging experience of my life and I have had a few.
Nothing compares to how hard it can be to summon the patience that is essential to care for a dementia sufferer. Making sure they have enough clothes on when it is cold, or removing excess clothing so they don't overheat and collapse. Ensuring they have eaten and drunk something. Becoming dehydrated is commonplace with dementia sufferers as they have no recollection of what they ate or drank. Taking them to the toilet and reminding them to wipe their bum, from front to back in my mum's case and on bad days showing them which way to wipe their bum and where to place the soiled paper.
Yes it is without doubt a truly intimate way of loving. I have experienced, on a couple of occasions, cleaning up poos from the floor. Sometimes the medications prescribed cause significant behavioural changes. You need to take an ongoing interest in what medication is being prescribed to your loved one when they are in aged care, to see how they are responding. And then there is the paranoia, the nonsensical utterances, the half-started conversations which end before they have really begun.