Alzheimer's: Dismantling of Families

Alzheimer’s doesn’t just steal memory, it dismantles families. Not all at once, not loudly, but slowly, quietly, and relentlessly. One forgotten name becomes a missed appointment. One moment of confusion becomes a permanent shift in roles. Over time, families are forced to reorganize themselves around loss that hasn’t fully arrived yet. And in that space, between who someone was and who they are becoming, grief takes root long before goodbye.

What makes Alzheimer's uniquely devastating is that the person you love is still physically present, even as pieces of who they were begun to slip away in front of our eyes. Families are asked to grieve in fragments, over years, while continuing to show up, care, and pretend that what is happening can be managed or explained. The most difficult part is accepting that it is a loss without a clear ending, and that ambiguity is often the hardest part.

For many families, the first loss isn't memory, it's certainty. Usually there is a moment when something feels off. A story retold one time too many or a familiar face not immediately recognised even when you are their son, daughter, lifetime partner or spouse. It's a sudden confusion that can't be brushed aside as stress or aging. Initially, denial feels protective. Most families explain things away. They wait and hope, but slowly recognition settles in. And with it comes fear, not just of the diagnosis, but of what it means for the future. Once Alzheimer's enters the picture, time begins to feel different. The question is no longer if things will change but how quickly.

Alzheimer's has a way of quietly rearranging family roles. Adult children become decision makers. Partners become caretakers. Conversations shift from shared memories to instructions and reminders. Authority, independence, and identity all begin to blur. The emotional whiplash of loving someone while managing their decline can be overwhelming. Children often disagree, argue with each other, and search for ways to be the number one child in the overall picture. This is a time when many report issues of control that has always existed within the family. Those providing care often find themselves grieving the loss of companionship while still performing the daily tasks of care. It can be exhausting to hold tenderness and responsibility at the same time, especially when the person you are caring for no longer understands the weight you may be carrying.

One of the most isolating aspects of Alzheimer's is anticipatory grief, mourning someone who is still alive. This kind of grief doesn't receive casseroles, bottles of champagne, or sympathy cards. There is no funeral, no collective acknowledgment or memorial. Instead, there is a long, quiet sadness that lives beneath everyday interactions. Caregivers grieve the loss of conversations, shared jokes, recognition and mutual understanding, often while being told to stay positive or cherish the time you have left. Remember, cherishing and grieving are not opposites, they often exist side by side.

In 2022, I went to visit my older sister who was dealing with Alzheimer's disease, as well as other heart related issues. The warning signs were there many years before, but we were all too busy with our lives, relationships, work, school, or just too exhausted to ascertain what was happening at the time. Today, I realise how important it would have been to be aware of the warning signs of the disease. It would have made a major impact on our lives. You can check out the early signs on the Alzheimer's Association website or on Dementia Australia's site.

Alzheimer's doesn't just affect one person; it has the power to test entire family systems. Disagreements over care decisions, finances, medical interventions, and emotional labour can create deep fractures between siblings that can last forever. Some family members step forward; others step away and prefer not to get involved. Resentment builds quietly when responsibility is unevenly distributed, and unspoken expectations begin to develop into conflict. In the midst of these tensions, the person with Alzheimer's often sits at the center feeling confused, unaware of the arguments unfolding around them, no longer able to advocate for themselves or understand why familiar faces feel so distant. Too often, family members are too busy fighting over the control of finances. We often forget that the person with Alzheimer's can hear the discussions, arguments, and recognise the anger on faces. Often, they will zoom out and pretend not to understand, or even better, not recognise troublemakers.

Beyond memory, Alzheimer's has the power to take:

• Shared history

• Emotional exchange

• Spontaneity

• Ease of being known

For caregivers, it often takes:

• Time

• Sleep

• Identity

• Emotional Safety

It was a great pleasure to see my sister hold on to things that meant a lot to her. Most days she made no sense when talking to me, but often, she would start a clear conversation with me. It made me smile but also made me question if I was just imagining it all and the thought frightened me. I can still remember how her smile was triggered by certain music and she would start to dance with me and then we would laugh a lot. Even a simple hand squeeze made me smile because I could see in her eyes that she remembered and loved me. Even a shared laugh felt like a miracle and brought me lots of joy and happiness. Connection doesn't disappear entirely; it simply changes shapes. Love becomes less about being remembered and more about the presence.

For many families, learning to hold what remains, rather than constantly mourning what is gone is both painful and necessary. It doesn't erase grief, but it can soften it. Overall, it taught me to always show kindness to those that you love the most and to those that deserve it. It's all about living and enjoying one's life to the fullest without any regrets. After spending time with my sister, dealing with so many emotions, I left knowing that the time we spent together was incredible and I will never forget the way she would make me laugh and teach me new dance moves. She was always a great dancer. When certain music was played, it all came back to her, and she couldn't stop smiling and moving her body and making me move mine to the beats.

Alzheimer's teaches families how to love without certainty, how to grieve without endings, and how to stay present through prolonged loss. It dismantles families not because they are weak, but because the disease demands more than most people are prepared or able to give. Losing someone who is still here is one of the quietest heartbreaks there is in life. And for those living it, being seen, truly seen, can make all the difference.