The first time I really heard the word ‘dementia’ and took notice was standing on the footpath outside my family home, as a doctor gave me her devastating diagnosis about my father. In that moment our family home was no longer a safe haven to me, and my parents were no longer my nurturers. That one small destructive word swept it all away.
The same doctor who hugged me outside my family home as the truth sunk in, warned me that what I would see inside the acute dementia wards would be disturbing. Certainly, I was entering into a new world – a topsy-turvy land where normal doesn’t exist. The door to the outside world was locked at all times. When leaving the ward I learned how to key in complex codes and check over my shoulder to make sure I wasn’t being followed.
I met Allan, formerly a successful accountant, who had forgotten how to walk and instead used his bottom and hands to move around the floor like a crab. He was intrigued with the texture of the carpet, and spent hours examining it. Mary liked to discard her clothing and launch into a striptease at any time of the day – flowery frock and matronly bra flung across the room with wild abandon.
Gina was devoted to her pet giraffe and baby doll. She rocked them to sleep and carried them with her religiously. They were her babies. Martha cried for her mother and shrieked insistently ‘Where is Mummy? Where has she gone?’ The little girl words jarred as they came out of the thin wrinkled mouth of an 80-year-old.
Ethel was infatuated with my husband and exclaimed ‘Oh it’s you’ and chased him around for a kiss on many occasions. Jim had been a popular radio announcer and in his well-modulated voice asked ‘why am I in here with all of these mad people?’ as he shuffled along in his brown slippers.
I watch these unique individuals and wonder why. They were all once bright-eyed babies, cherished by their parents, playful children, who grew to marry, make love and have children of their own. Some held influential jobs and impacted the world around them. Then they got dementia.
I have become accustomed to this world of shadows. Watching my father’s decline consumed me with grief, but at the same time I adjusted to this strange world of dementia.
When Mum became too ill with her brain tumour to stay at home the hospital placed her into a nursing home also. It was a dark place. Visiting her there felt like trying to swim in a lake of concrete. Most visits involved arguing with staff to take her to the toilet, and refusing to allow them to use restraints to tie her to her chair. I was always yelling at someone. I would leave and drive home squinting through the haze of hopeless tears. It was agony.
One day a thought jumped out at me as I struggled through the visit. ‘You need to bring light into the darkness’. The nursing home was indeed a place of darkness. I wondered how I could do this.
On the next visit I took along some books and read Mum some psalms and poetry. Her moaning ceased and she calmed down. I could see that she could hear the enriching words and her thirsty soul was nourished by them. The surroundings were just as unappealing but the atmosphere shifted as my quivering words rung out -
The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul.
Today Mum is in another nursing home which offers 5-star accommodation and compassionate staff. Yet I still operate on the theory of bringing in the light. I arrive armed with bright fresh flowers, funny stories about the kids, chocolate cake and French perfume – little snippets of being alive in a place that is punctuated by death.
I no longer feel afraid of the bottom walkers and the elderly strippers. In fact I have become quite fond of many of them. Who is really normal anyway?
My children have grown up visiting dementia wards. I remember as toddlers they would get down on the floor and bottom walk around the place with Allan, and join him in examining the floor. They would have a good giggle when Mary’s dress came flying by. They haven’t once looked shocked and turned away. Children can certainly teach us some lessons in acceptance.
Alzheimer’s Australia reports that the number of people diagnosed with dementia is projected to increase, with the number of cases increasing from 245,400 in 2009 to 1.13 million cases by 2050.
Dementia is ugly and it creates darkness. If you have a loved one who is facing it, I empathise with your pain and encourage you to bring your own unique light into the situation. Don’t let it beat you. It is amazing what we humans can cope with. There are little ways you can improve the quality of life of your loved one. You can be their advocate and fight for them to receive the compassionate care that they deserve. You can bring snippets of life to them, even if it is only a milkshake or a mango. Most importantly, you can show them that you still love them, despite everything. Nothing can take that away from you, or them, not even the ugliness of dementia.
If you are caring for a loved one with dementia, or another debilitating illness, or have been through this experience, I’d love to hear from you about how you cope. Perhaps if we share our insights and support each other, we can make the journey a little easier.
Kerry, your writing is getting better each time! Dementia is so common, but usually feared less than physical problems. Perhaps we assume that we won’t be aware of it if it strikes us, so why worry? Caring for each other is one of the few things worth doing! I think almost all religions concur although most have degraded into the usual ego wagging entities with which we are so familiar. As family members or friends, we suffer more than the patient, at least it seems that way. Keep writing!