Violet, an independent, godly woman living in Chicago, fell and injured her face. She walked into church attracting the attention of a group of church ladies.
Thinking that she had been mugged, they phoned 911 and took her to hospital. Another one called her daughter Suzka, a painter living the bohemian life in a converted warehouse in California. She suggests that Suzka catches the next flight and comes home. At hospital the doctor tells Suzka that her mother has meningitis-encephalitis causing rapid dementia and cannot live alone.
Suzka is the last person one would think to be a caregiver; however, she becomes a devoted one. Her experiences are written down in her book Wonders in Dementialand. The book is an eccentric one ranging from flashback memories of episodes that might have actually happened to pure fantasy. It is an inimitable view of dementia from the perspective of a caring, loving daughter who accompanied her mother through her journey in Dementialand.
The book breaks through the stigma of dementia, a condition that some try to hide away, ignore or not speak about. This stigma is the result of a lack of knowledge about the condition, which can lead to the dehumanisation of the person with dementia; an enormous stress within families and friendships and delayed diagnosis and support.
Suzka’s experience is not unique.
It took you approximately 90 seconds to read so far. It means that during this short span of time 30 more people were diagnosed with one of the hundred different forms of dementia, a cure for which does not exist. A new case is diagnosed every three seconds. It is calculated that over 50 million people worldwide are living with dementia. By 2050 the numbers are expected to rise to over 131 million.
In Malta, it is estimated that there are currently more than 4,300 people with dementia. Multiply that number by the family members and caregivers affected directly, day in and day out (and night as well!), and you have a universe of people living in Dementialand. As if this is not enough note that since the number of people living longer lives is increasing, the number of people with dementia is expected to double over the next 20 years.
He was not in the home. His mind had transported him to where he once worked
For most readers these are numbers which can impress them or not. But for me and others like me who passed from the same experience as Suzka these statistics are not numbers. They represent people, real people with blood running in their veins, tears sometimes shedding from their eyes and their dearest memories escaping from their brains.
I still vividly remember when the consultant at the hospital told me that my father had been diagnosed with dementia, something I suspected and lived with for quite some time without accepting.
“Someone has to be with him 24 hours a day,” he told me while adding: “Since it is impossible for you to do that, try and find a place where they can take care of him.” I was shell shocked and in denial for a number of days. Going from home to home trying to find the best for my father was extremely painful.
I remember when my siblings and I took him to Casa Antonia and later to the dementia ward in St Vincent De Paul Residence. My life changed radically. Every day I visited him from 3pm till 7.30pm. It was the least I could do for him.
My question always was: is he suffering? Does the loss of memory and the fact that he is not where he physically is but where his brain takes him affect him negatively? He was at peace most of the time, wondering in faraway places. But there were many instances – and as the condition deteriorated these instances increased and became more frequent – when he was full of anxiety, fear and torment. How can you reach out to a man in this condition; a man so close and dear but at the same time so distant and ‘unknown’?
But there were nicer moments as well. He kept his fine sense of humour and his skill in repartee. He gave a great interview to Paul P. Borg about cart making, the skill of his father, now published in the second volume of Nismagħhom Jgħidu.
Most of all he remained a loving father. Once after wheel chairing him for a long stretch of time I stopped. He was not in the home. His mind had transported him to where he once worked. The wheelchair was a truck carrying his tools. He angrily confronted me: “I have three children and a wife. I have to keep on working. Why, lazy you, do you want to stop? Let us continue working.”
The human spirit, even when wounded by this condition which can be so harsh, can still rise up to higher planes. There are some wonders in Dementialand, after all.
(World Dementia Day was celebrated on September 21. Those needing help can phone 1771. This telephonic service is open 24 hours a day and those answering the calls provide information about the condition and about where one can ask for help.)
joseph.borg@um.edu.mt