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Dementia Advocate Pushpa Jayakody shares her experience, and that of her late husband Jaya who lived with dementia.
It was around the time I was working with UNICEF in Colombo, Sri Lanka as the Chief of Education. What an amazing job it was, and the time of life! Our two kids were completing their post graduate studies and had already started work. Pretty soon, we would also be enjoying the happy moments of their marriages. However, something was not going as perfectly as we had assumed. Some of Jaya’s behaviour came into question. Yet we tried to adjust and forget the changes, with the hope there was an innocent explanation.
However, as time went on I felt this wasn’t so and that something was going on within Jaya that was connected to his general health. He had dizzy spells resulting in several visits to medical specialists. None suspected anything frightful. I wasn’t happy. Finally, the only answer seemed to be for me to resign from my beloved job and return home to Australia. Jaya wasn’t unhappy! My children were around and I, as usual, had a lot of faith and confidence regarding the medical system.
At least one of us had to work and so I found a position in Melbourne. I started working five days a week, but it didn’t last long. Jaya was forgetting his routine medication and also exhibiting very unusual behaviour. He couldn’t find his way home after we went out for our walk, and sometimes even needed my support to find our own room or the bathroom. This brought tears to my eyes. What was happening to Jaya, the one who was such a strength to us at all times and in everything?
My 90-year-old mum to whom Jaya was such a massive support noticed the changes with immense sadness. My children planned trips to places he loved visiting. However, they observed Dad would get confused on the plane and, in fact, for the majority of each trip. Both daughter and daughter-in-law discovered they were expecting during this time. Our family awakened with new hope and brightness! Jaya had always loved kids.
But things did not turn out as anticipated. Off and on I discussed the changes with Jaya’s doctors, but because he was fine during appointments nothing was taken that seriously. I reported the situation to the cardiologist during a consultation, and it began to become obvious there was a real issue. Many visits to the hospital followed over the course of about a year, eventually resulting in a specialist diagnosing vascular dementia, for which there is no cure.
2009 was a special year with the addition of two lovely boys to the family. Jaya saw them, and carried them, but we were cautious. He could forget that he had a baby in his arms. By this time, we needed to care for him throughout the day. Much of the time it was just me and him, and I had to manage all his requirements and ensure his safety at all times. Everything became so complicated, with him needing help for all his daily functions. There was no option to leave him, even for a minute. I left my job and life became one big challenge. Times were dark for both of us. The kids were sad, and friends surprised.
Very soon, my children and other family members started to learn about the condition and became very knowledgeable. Their recommendations were a massive support. One major suggestion was to get involved with Dementia Australia. The organisation provides massive support to people with dementia and their carers. Very soon I learned they conducted courses for people like us. I was surprised to see other participants much like me and our family. I was able to cry with the others, and grieve, and share the situations we were in. It was comforting to realise I wasn’t alone. Subsequently, I became a member of the Consumer Advisory Committee which has provided a strong link with the organisation and its activities.
The deterioration was rapid, but I continued to look after Jaya at home until it became too difficult. He started to escape and wander. He didn’t know who we were and often insisted that he needed to go home, thinking of his old family home. The situation became very serious and risky. My children moved closer into rented houses, leaving behind their newly owned homes.
His family realised what we were going through and they insisted I should no longer keep handling all the turmoil. His brothers decided there was no option other than to admit him into a nearby care home. An entirely a new and heartbreaking experience! Counselling or supporting the family wasn’t a priority. The place was a fully-fledged private nursing home with all the modern facilities, but had no staff who could handle him. Very soon the manager advised me that Jaya needed to be admitted to hospital for a proper assessment. Amidst tears I agreed. He was taken by ambulance. I was panicking. Would the staff be kind enough to accept Jaya’s difficult and unpredictable behaviour, and manage him without me? The pain within me was unbearable and safe-guarding my strong personality was such a challenge.
However, the experience did not turn out to be that scary. The nurses were well-equipped and had a wealth of relevant experience, meaning they were able to manage the situation well. We were able to breathe, but how long could he stay there? The assessments commenced. It was hard. A CT scan showed significant damage to the brain. He’d had multiple strokes, in silence.
He was kept in hospital for more than two months. Almost every day I woke up with the feeling of hope that he would recognise me when I saw him next. My biggest question was, where to next? We were fortunate that the hospital decided to send him to an extended care centre. However, another new environment and new people added to his confusion.
From then on, management at the centre looked for a permanent place for Jaya. I was extra careful not to accept just any place. By that time, I had developed some confidence in my knowledge of the system. It took about another two months to find a vacant bed in a new place, and it was a big step forward. Luckily enough, it was located close to me so I could visit him every day.
We met the staff and had a look around. It looked pleasant and friendly and, above all, the staff appeared very confident and experienced around such patients. Their daily routines were filled with these people’s laughter, cries and sorrows. What a noble task! Finally, we made the move to leave Jaya in this new, permanent home. I spent lots of time there, the staff became my friends and I got involved with lots of the activities.
Gradually, we could see the brain decline and many other organs became weak. He was not able to walk, not able to feed himself, and did not recognise his family. It was just unbelievable and chaotic.
It was at this time that I was also approached by a carer consultant, who offered help through a peer support program. Her thoughtfulness resulted in me being connected with the Respecting Our Communities project of the Aged Persons Mental Health Program (APMHP) at the North West Department of Mental Health. This committee looks at promoting the participation of consumers, carers and the wider community within the health service, with a particular focus on the Aboriginal community, Culturally and Linguistically Diverse (CALD) communities and people living with disabilities.
As a carer member, I was also given an opportunity to undertake training on interventions that support recovery. I consider it a reward that my grief is able to be shared and can be of use to others on this same cruel pathway.