Amanda : A Love, Lost and Remembered
- admin1356
- Dec 16, 2024
- 7 min read
Amanda recalls the moment she realised something was profoundly wrong with her husband, Ian. Once a fun-loving, strong and supportive presence in her life, Ian began to change in ways that felt inexplicable.
A successful Marketing Manager known for his wit and resilience, Ian had always been the steady rock, especially during Amanda’s busy days as a GP. But in his early to mid-50s, Ian’s once-easy-going nature grew uncharacteristically anxious and stressed, leaving Amanda unsettled.
As time passed, Amanda couldn’t ignore the signs.
“I remember the day it hit me,” she reflects. “I thought, ‘He has Alzheimer’s,’ but quickly dismissed it. He was only 57.”
Yet the nagging suspicion didn’t fade. Even with her background in medicine, Amanda was hesitant to voice her fears aloud. Instead, she quietly prepared, downsizing their home and adjusting their lifestyle to relieve Ian of the pressures of work. She hoped these changes might ease his mind, even as she sensed something far more profound at play.
The Diagnosis That Changed Everything
In December 2018, their fears were confirmed. Ian was diagnosed with Alzheimer's, and life as they knew it shifted. For Ian, it was a moment of mixed relief and devastation. Finally, there was an explanation for his struggles, yet it marked the beginning of a journey neither of them was prepared for. Ian’s once dynamic personality began to fade, and he slowly withdrew from the world around him, struggling to reconcile the person he was with the limitations imposed by his condition.
The hardest part, Amanda says, was watching Ian’s role in the family change.
“He was such an energetic and witty soul who loved to make people laugh,” she remembers. “But as his condition worsened, he became a stranger to us at times, and even in the later stages had aggressive episodes”.
The shifts in Ian’s behaviour left Amanda grappling with the reality of a disease that robbed him of his essence and left her struggling to care for him.
Navigating a System That Failed Them
Despite being in the medical profession, Amanda felt isolated and overwhelmed.
“I thought, as a GP, I’d be equipped to handle this. But dementia strips you of any certainty. You’re constantly adapting to a new version of the person you love,” she explains. The healthcare system offered little solace. Needs assessments and care options often fell short of addressing Ian’s specific needs, especially as a younger, physically fit man in his 50s.
“Ian didn’t need someone to sit and have tea with him. He needed someone who could keep up with him physically,” she says.
Frustrated by the system’s inadequacy, Amanda found herself doing much of the research alone, seeking out the right support to help Ian stay active. Eventually, she found an amazing man, Noel, who was a trained caregiver, and became Ian’s exercise buddy on the days Amanda was at work. He and Ian would run, go to the gym, swim, play tennis etc. This enabled Ian to remain very physically active and engaged. However, the process of finding this support was draining and the support unfunded.
The Family That Stepped In
Through it all, Amanda found unwavering support from Ian’s sisters.
“I was incredibly lucky to have them,” she says. “Ian’s older sister, Sue, would visit every week, bringing art supplies and spending precious time with him, sparking small moments of joy and connection.
“His younger sister, Carolyn, despite her own busy life and living much further away, would still come up every few weeks to spend time totally present with Ian.
“They didn’t just support Ian; they supported me and the kids through everything. They helped me make tough decisions and were there for every step.”
In addition to Sue and Carolyn, Amanda and Ian were very fortunate to have practical support from close friends who would visit regularly to spend time with Ian and support both of us.
The love and dedication of family and friends became a source of strength, grounding Amanda as she navigated the relentless demands of caregiving. “Their presence was a reminder that we weren’t alone in this.”
The Children’s Journey Through Loss
Amanda wasn’t alone in her grief. Her young adult children, Josh and Brooke, felt the impact acutely. Both of them found it difficult to connect with their dad as his personality changed.
Brooke was still living at home initially. “She struggled to see him as her dad,” Amanda recalls.
Yet, despite the challenges, Brooke became a quiet pillar of support during Ian’s most difficult moments.
“So many times, when Ian was extremely distressed and I felt at breaking point, I would call Brooke, and she would just be there to hold his hand,” Amanda says. “She would turn some music on and get out the paints and brushes. Ian would calm down, and they would paint, laugh, and reconnect.”
These moments of shared creativity brought comfort and helped bridge the gap left by Ian’s illness, giving Brooke and Ian a way to rediscover their bond, even as so much else was slipping away.
Josh had moved out of home and was flatting. He managed his visits in a way that supported both Ian and Amanda. He and Ian had a common love of sport, and running, and connected through this shared passion. Josh trained for and ran an Ultramarathon to fund-raise for Alzheimer’s dementia, and Ian was so excited for and supportive of him.
“Ian would be so proud of them both,” Amanda says. “He wanted nothing more than for them to have the adventures he’d had at their age – which they are both doing now. His absence from their milestones is a loss we all feel deeply.”
Saying Goodbye
As Ian’s condition deteriorated, Amanda and the family made the painful decision to place him in care. Ian was initially cared for at Fraser McDonald, within the public hospital system, a facility which offered an intensive level of care and compassion that Amanda remembers with gratitude.
“The staff were incredible,” she recalls. “They took the time to understand Ian, treating him with kindness and empathy. The facility had an occupational therapist, physiotherapist, nurses and doctors who engaged him in meaningful activities, helping him retain a sense of dignity and purpose, even as his health declined.”
Sadly, as Ian’s illness progressed, he was assessed as requiring an ongoing psychogeriatric level of care. Long term care can only be provided in the community, and so Ian was transferred to a facility that promised a great deal, however, provided a much lower standard of care.
“It was heartbreaking,” Amanda remembers. “Gone were the daily activities, the expertise and the familiar faces who cared about Ian as a person. His basic needs were met — feeding, toileting, and cleaning — but there was no personal connection, no attempt to engage him in physical or mentally stimulating activities or to lift his spirits.
Amanda would visit to find Ian in a lazy-boy chair, declining physically so rapidly, with little interaction or stimulation from the staff. Her heart broke seeing him in this state. She, Ian’s family, Josh and Brooke and family friends took turns visiting, and Amanda even hired someone privately to spend time with him, reading to him, playing music, and keeping him company on the days they could not be there.
“We couldn’t bear the thought of him spending his days alone, with no one to truly see him,” she says.
The contrast between the two facilities was stark, leaving Amanda feeling helpless and let down by a system that promised so much yet delivered so little.
Then, in early September 2022, Ian contracted COVID. Amanda vividly remembers the last time she saw him before he fell ill. She, along with Sue and Carolyn, had spent a special morning with Ian. They were chatting, singing, holding hands, finding moments of joy and connection between the heaviness and sadness. These moments were gold, they felt Ian’s deep love in those moments and knew that Ian felt safe and loved. Just hours later, Amanda received a call to say that Ian had tested positive for COVID.
A week later, Ian was admitted to the hospital, where Amanda found him barely conscious, frail and visibly aged. COVID had taken its toll, weakening his body to the point of no return. He lingered for two more months, but he was never able to speak again. On 4 November, at the age of 62, Ian passed away.
For Amanda and all the family the loss of Ian has been a complex journey of grief.
“We always thought we would grow old together,” she reflects. “But dementia took that from us. Although there were precious moments as we learnt to slow down and appreciate more fully the simple things in life, dementia took away our future, it was not the life we planned. Dementia became all consuming.
Even now two years after Ian’s passing, Amanda feels his absence profoundly. “I grieve more deeply now than ever,” she admits. “Watching our children take on new adventures, knowing how much Ian would have loved to be there, is a constant reminder of what we lost.”
A Call for Change
Looking back, Amanda is grateful for the incredible support from family and friends. “We were so fortunate in that regard.”
However, in terms of the system, what is available in the community, the funding, and negotiating the whole process, she is very clear that there needs to be so much more support and more understanding of the unique needs of families affected by young onset dementia. Amanda knows her journey, and those of all the others she met going through this challenging illness, would have been different with a system better equipped to provide age-appropriate care and resources for those in the prime of their lives.
“All those affected by young onset dementia and their families deserve better” Amanda says. “I hope that by sharing our story, we can help create a system that respects and supports families facing the same heartbreak.”
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