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Like many family members of a loved one with dementia, the later stages can be an emotional rollercoaster. Hear how Adam Abbasi-Sacca and his family navigated this difficult time.
“It was as if we were losing a part of her every day.”
For Adam, watching his beloved grandma lose her ability to care for herself and to recognise her family was extremely painful.
“The later stages of dementia were an emotional rollercoaster for me, and the most challenging aspect was seeing my once vibrant grandma fade away right before my eyes. It was heart-wrenching to watch her look at me with fear, as if I were a stranger, and not the grandson she adored. I would try to reintroduce myself through photos, but the reality that she may never remember who I was anymore was a painful thought that lingered in my mind,” Adam said.
“As her condition worsened, my family and I had to step up and become her caregivers, providing her with the basic necessities that she could no longer manage on her own. Watching her struggle to do things that were once so effortless for her, like eating or getting dressed, broke my heart. It was as if we were losing a part of her every day.
“But what hurt the most was seeing her memory slip away bit by bit – that’s the reality of dementia, I accept this. The woman who had been the backbone of our family was now struggling to remember the simplest things. It was devastating to witness her struggle to recall even the most precious memories we had shared together. The thought of losing her completely was almost unbearable.”
“It was a way to create a sense of connection even in the face of her declining cognitive abilities”
Adam and his family continued to support their grandmother in the later stages of dementia and found different ways to maintain their connection.
“We discovered that engaging in activities that my grandmother enjoyed, like listening to her favourite music or looking at old family photos, helped to spark some memories and bring her comfort. It was a way to create a sense of connection even in the face of her declining cognitive abilities,” Adam said.
“This involved meeting grandma where she was on any given day, instead of projecting any guilt or shame onto her because of the pain of watching her not remember. Sometimes, this meant playing with the giant teddy bear she had beside her bed, for comfort.”
“This allowed us to prevent burnout and maintain our own mental and emotional wellbeing”
Adam and his family worked together to ensure they were able to be there for his grandmother but also each other.
“It was also crucial that we took breaks and sought out support from others. We would often have family members come and stay with my grandmother for a few hours so that we could run errands, catch up on sleep or just have some time to ourselves. This allowed us to prevent burnout and maintain our own mental and emotional wellbeing, which in turn helped us to be more present and effective as carers,” Adam said.
“As a family, we worked on communicating openly and honestly with one another about our feelings and concerns regarding my grandma's condition. This didn’t always mean agreement, and sometimes it involved negotiation too. But that’s what happens when the source of your pain is heartbreak and love. My family also sought support from various resources and professionals in the field to help us navigate the emotional and practical challenges of caring for someone with dementia.
“Grandma’s condition really brought our extended family together. I am so grateful to my aunties, uncle, parents, siblings, nieces, nephew and cousins for being there and doing their upmost for grandma from the start of the process through till the later stages. These are people whom I absolutely adore.
“We were all united in our love and dedication to her care, and that sense of connection helped us to get through some of the toughest times. It's a reminder that, even in the darkest times, there is always the possibility for love and connection to shine through. Something, I am sure my grandma would’ve loved to see.”
“Taking care of yourself is not selfish, it's necessary”
Adam’s advice to anyone going through a similar experience with a loved one is to reach out.
“For anyone going through the challenging experience of caring for a loved one with dementia, I see you and I feel your pain. It is an emotional rollercoaster, and it's important to remember that you are not alone in this journey,” Adam said.
“One thing that my family found helpful was to lean on each other and seek support from others who have gone through similar experiences. Whether it's joining a support group, connecting with friends or family members, or even just talking to a therapist, it's essential to take care of your own emotional and physical wellbeing.
“I also want to emphasise the importance of staying hopeful and keeping an open mind – that could just be my perennial optimism. While dementia can be a devastating condition, medical research is constantly advancing, and new breakthroughs are happening all the time. By staying connected to the scientific community and supporting research organisations, we can all work together towards a future where dementia is no longer a threat to us or our loved ones. Not just in Australia, but globally.
“Remember, taking care of yourself is not selfish, it's necessary. And by doing so, you can better care for your loved one with dementia and make the most of your time together.”
Dementia Australia offers counselling, group and individual support services, and many other personalised support programs for people impacted by dementia, at all stages of the disease.
To access support services, or simply to have a chat, we are here to help. The National Dementia Helpline is available 24 hours a day, seven days a week, 365 days a year on 1800 100 500.
Adam Abbasi-Sacca is a proud Italian and Iranian Australian freelance writer and commentator whose work can be found in a range of publications. His focus is storytelling and opinion editorial pieces that capture his personal experiences. He is contactable via his website.
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