Jackie McGregor: The yellow brick road back home - dementia’s deepest longing
Ever since my late mother developed dementia, I have associated the disease with Dorothy from The Wizard of Oz.
My mother frequently asked when she was going home, she was already at home but she was referring to her childhood residence.
This ‘going home’, phenomenon is common with dementia sufferers and a difficult aspect for carers to deal with. Beneath the yearning to return to a childhood abode is the need to be back in a place that felt comforting and secure to them, when their current world is becoming increasingly unfamiliar and disorientating. This is why I likened my mother to Dorothy, who one day woke up in Oz. Stranded in the colourful, utterly foreign land, Dorothy’s one goal was to return to her black-and-white world of Kansas.
Dementia patients can feel like they're in their own ‘Oz’, facing a confusing and frightening reality. Familiar faces can become strangers, much like the Lion and Tin Man were to Dorothy. They might not even recognise themselves (my mother no longer knew her reflection). It's no surprise they long for ‘home’, when everything around them seems terrifyingly alien. This echoes Dorothy's realisation in Oz when she utters, "We're not in Kansas anymore, Toto!"
This week is Dementia Action Week, aimed at raising awareness and encouraging action to support individuals living with dementia. Currently, over 25,000 people in NI are affected by dementia. This number is projected to increase to nearly 60,000 by 2051. The Southern Trust is anticipated to have the highest number of people living with dementia by 2032.
Both my parents suffered with this disease, which was devastating to watch. I cared for them both full-time, my father lost his speech, but my mother posed the question many times daily, “When is my mummy coming to take me home?” These words tore at my heart.
The yearning for home can manifest in many ways, I had to keep the doors of our house locked because mum would attempt to leave. A person might pack imaginary bags, search for keys or worry about missing a bus in their pursuit of returning ‘home’.
Understanding the emotional need underlying this desire is important. The yearning is for a place deeply embedded in their earliest memories, a place where they felt safe and loved. Trying to reason with them that they are home is a waste of time and can cause distress. I found using distraction tactics worked best, such as making my mother tea and biscuits.
Just like Dorothy had to return home to find peace, people with dementia also seek that connection with their past. Understanding what is driving their search for ‘home’, can help caregivers provide more compassionate care for the individual, whose repetitive questions and challenging behaviour stems from a deep sense of loss, fear and displacement.
We may not be able to provide them with ‘home-returning’ ruby slippers, but we can understand their desire to go back to a familiar place, to return to ‘Kansas’. As Dorothy said, “there’s no place like home!”