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.
It sounds awful but in some ways, in the treasured moments and minutes, loving a dementia sufferer is one of the most beautiful experiences you can have. To have an hour where we can just sit, enjoy delicious food, cups of tea and coffee is essential. The majority of time is spent dealing with repetition, frustration, fatigue, making sure she goes to the toilet: wipes her bum and washes her hands and at times feeling isolated in her company. To counteract how bereft I can feel, there are moments of ocean deep intimacy and recollection which we share.
I swim most days... and this along with taking a daily low dose of an antidepressant keeps me going. I have a good friend who is my sanity-saver and soul replenisher and my husband and son are my salvation. And I debrief to a psychologist once a month.
I also attend wonderful carer support monthly meetings provided by Alzheimer's Australia. As an organisation its staff are second to none. It is a godsend. The most gratifying love I experience is continuing to love her when her behaviour can be anything but loveable, whose personality is distorted and in whose company I can feel so isolated even when she is physically right next to me.
If you need support in caring for a loved one with dementia, visit Alzheimer's Australia.