Alzheimer’s Touched Our Family – My Story

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I am the youngest daughter of Cecil Morrison, a man who had Alzheimer’s disease.

My story began in the early 1980s, when I was in my mid-teens. At first, we began noticing small but unsettling changes in Dad. His moods seemed different; his mannerisms and behaviours were changing and even his whole demeanour was not quite the same. The man we knew seemed to be becoming more withdrawn, unpredictable and at times difficult to understand. 

 He would sometimes tell us that he could hear voices in his head, something that was completely unfamiliar for us all. We had no idea what was happening to him or why he was experiencing these things. We simply knew that Dad was changing, and we didn’t know how to help him.

Around this time, my brother-in-law had travelled to the United States where at the time Alzheimer’s disease was beginning to receive greater recognition there as a distinct medical condition, and during his trip he came across information that was unfamiliar to us. When he returned, he began sharing what he had learned with our family and further researching to understand this illness more.

For the first time, we started to recognise similarities between what we were seeing in Dad and the symptoms being described. His changing moods and behaviour, the confusion, the changes in his personality and the things he was experiencing were beginning to make a little more sense. 

It was difficult to comprehend, and we certainly didn’t have the understanding and resources that families have today. But those conversations gave us our real indication that Dad’s changes might be a part of an illness rather than simply him becoming difficult or behaving differently.

Slowly, we began to realise that there was a name for what was happening to him. By the time I was 19, Dad was diagnosed with Alzheimer’s disease.

Although we were beginning to understand that Dad was unwell and that his changes might be connected to Alzheimer’s, knowing that did not make it any easier to live through. We still had so many questions and so little understanding of what the disease would mean for Dad or for our family. Watching someone you love change in ways you could not stop or help was painful, confusing and at times very frustrating.

I had never even heard of Alzheimer’s. before it became part of our lives. 

 

There was very little information, understanding or support available to families like ours and we were left trying to navigate an illness we barely understood while watching the man we loved slowly change before our eyes.

Dad’s personality, judgement and independence began to fade. His hygiene deteriorated, he became short-tempered and suspicious, and he would accuse us of hiding things from him, particularly his keys. More often than not, we would eventually find them in the same drawer where he had always kept them.

 At the time, these situations could be incredibly frustrating and difficult to understand.  But beneath the frustration was the sadness of watching the father we knew slowly change in ways we could not stop nor fully understand.

As the illness progressed, his driving became dangerous. He would become confused on the road, sometimes driving on the wrong side of the street or failing to stop when he should. Eventually, he had to give up driving – another painful loss of his independence.

One of the most painful memories from those early years was my wedding day.

By the time I married in 1985, Dad was well into the early stages of Alzheimer’s. To our wedding guests, he was simply a strange, confused man whose behaviour they did not understand. They could not see what I could see – that the father I knew was slowly being taken from me by an illness none of us yet understood.

While everyone else was celebrating one of the happiest days of my life, I was painfully aware that Dad was not the father who should have been standing beside me. I remember feeling embarrassed, confused and heartbroken, knowing that people might judge his behaviour without understanding why he was behaving that way.

I wanted them to see the Dad I knew – the loving father behind the illness. Instead, Alzheimer’s was already changing the way others saw him and, in turn, changing the relationship I was able to have with him.

It was a day that should have been filled with nothing but happiness, yet beneath the celebration was the quiet grief of knowing I was losing the father I knew.
 

Dad had always loved walking, and in the beginning his regular walks were simply part of his everyday routine. We thought little of them because he had always enjoyed getting out and walking. 

 

When my husband and I bought our first home, Dad would often pop in while he was out on one of his walks. He would come inside, say hello and then almost as quickly as he had arrived, he’d turn around and head back out the door. I would sometimes ask, “Where are you off to, Dad?” He would turn around, look at me with a blank expression, give me a little smile, and simply walk away.

At the time, I didn’t fully understand what those moments meant. Looking back., I realise they were some of the early signs that something was changing. Dad was still Dad, still walking his familiar routes and still coming to see us, but there was a growing sense that he wasn’t quite sure where he was going and why.

But as the Alzheimer’s progressed, those familiar walks began to change. He would sometimes become confused about where he was and lose his sense of direction. At first, we didn’t fully understand how serious it was until one day the police brought him home. That was when we began to realise that Dad could no longer always find his way back.

From then on, his walks became a source of growing anxiety. There were times when he would leave home and become completely unaware of where he was. We would drive the streets desperately searching for him, frightened for his safety. On some occasions, the police brought him home; at other times, a kind taxi driver found him and made sure he returned safely.

Something that had once been such an ordinary and enjoyable part of Dad’s life had become something we feared.

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While Dad was losing his independence, Mum was losing her husband.

She cared for Dad around the clock while also caring for her own ageing mother. She carried an enormous physical and emotional burden, with little opportunity to rest or simply be a wife.

As her daughters, we loved Mum dearly and wanted to help, but we also had busy lives and responsibilities of our own, with some of us living interstate. As the youngest daughter, I had two toddlers to care for and was unable to provide the regular respite Mum desperately needed. Much of the responsibility fell on her.

Looking back now, I understand how much she was carrying – the exhaustion, fear and responsibility of caring for Dad while watching the man she loved change beyond recognition.

There was no handbook. No real preparation. No way of knowing what tomorrow would bring.

Eventually, Dad’s behaviour became too difficult for Mum to manage, and he had to go into nursing care.

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Even there, Alzheimer’s was poorly understood. Dad escaped several times, including one occasion when he climbed a ten-foot fence trying to get out. Following that incident, he was heavily medicated, and I will never forget visiting him afterwards.

He was lethargic and withdrawn, almost lifeless.

This was my father - the man who had once been strong and independent.

But one particular visit has stayed with me more than any other.

I walked into the nursing home and saw Dad teetering on a window ledge. He was heavily medicated, unsteady and vulnerable, yet somehow, he had managed to climb up there.

What broke my heart almost as much as seeing him in that position was watching people simply walk past him - staff, residents, people going about their day as though this were just another ordinary moment.

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But to me, it was anything but ordinary.

I remember feeling an overwhelming mixture of fear, anger and helplessness. I tried desperately to coax him down, speaking gently and reassuring him. I was terrified that if I moved too quickly or startled him, he might lose his balance.

Somehow, little by little, I managed to get him away from the ledge and help him back to his bed.

I remember looking at him lying there and feeling utterly heartbroken.

I wanted someone to see what I was seeing. I wanted someone to stop and recognise that this was not simply an elderly man with dementia. He was someone's husband, someone's father, someone's loved one.

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I wanted them to see Dad.

That moment taught me something I have never forgotten, how easily a person can become invisible once their identity is reduced to a diagnosis.

Dad was still a person. He was still my father.

Yet, in that moment, it felt as though the world had stopped seeing him as either.

In the beginning, despite everything Alzheimer’s had already taken from him, Dad still knew who we were. He recognised Mum, his daughters and the people who loved him.

But gradually, that changed.

There came a time when Dad no longer recognised his wife or his children. Eventually, he no longer recognised me.

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Yet every now and then, I would catch something in his eyes - almost a sparkle - followed by a smile that felt so familiar. For just a fleeting moment, it was as though he knew me. As though somewhere beneath the confusion of Alzheimer’s, my Dad was still there.

Sometimes I would visit with Mum, sometimes on my own, and sometimes I would bring my two little girls. It was heartbreaking to know that Dad no longer seemed to recognise them as his granddaughters.

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But those rare moments reminded me that Alzheimer’s had not erased the person I knew. Although his memories were becoming harder for him to access, there were still glimpses of the Dad I remembered – a familiar look, a smile, a sense of connection that seemed to break through the confusion, even if only for a moment.

 Those fleeting moments meant more to me than I can ever explain. They taught me that, even as Alzheimer’s changes a person’s memory and ability to communicate, the person we love is still there. Sometimes we just have to look beyond the disease to find them.

That is something I have carried with me ever since.

Never mistake the loss of memory for the loss of the person.

As his youngest daughter, the fact that Dad no longer knew me broke my heart. I never had the opportunity to truly know him as an adult. Instead, I watched Alzheimer’s take away his personality, memories, independence and, eventually, his ability to recognise the people who loved him.

In his final years, Dad became completely dependent on others. He had to be fed, struggled to swallow and drank from a beaker. The man who had once cared for himself could no longer do the simplest things.

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Dad died in August 1994 at the age of 68.

But my grief had begun years before.

That is the cruelty of Alzheimer’s: you can lose someone in pieces while they are still standing in front of you.

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Alzheimer’s Came Back Into Our Family

For a long time after Dad died, I thought Alzheimer’s was a chapter of our family’s life that had finally come to an end. I never imagined that, years later, we would find ourselves facing the disease all over again – this time with someone I had grown up with and loved in a very different way.

My eldest sister, Eileen, who is 15 years older than me, has now been living with Alzheimer’s for more than ten years. Yet her journey has been very different from Dad’s.

Having lived through what Alzheimer’s had done to our father, Eileen recognised the early signs in herself. She noticed that words were becoming harder to find and that she was struggling with things that had once been simple, such as counting out money.

Rather than ignore those changes or simply wait for the disease to take its course, Eileen sought medical advice and had herself assessed. Through that early diagnosis, she was able to participate in some of the early clinical trials and research into Alzheimer’s.

But Eileen has done far more than simply live with the disease.

She has actively sought to understand it, raise awareness and help others recognise what Alzheimer’s really means. She has spoken at conventions and events, shared her experiences and become an advocate for people living with dementia and the families who support them.

Alongside Eileen has been her husband, who has walked this journey with her every step of the way.

He has educated himself, become an advocate and worked tirelessly to support Eileen and raise awareness of the disease. Together, they have faced the uncertainty, changes and challenges Alzheimer’s brings, while continuing to find ways to live alongside it rather than allowing it to completely define their lives.

Their journey has been long. While I would never suggest that we can control how quickly Alzheimer’s progresses, I believe Eileen’s determination to remain engaged, informed and involved, together with the support and commitment of her husband, has helped make her experience very different from Dad’s.

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Her disease has progressed much more slowly, and for that I am incredibly grateful.

More than anything, I am proud of her and deeply grateful for the husband who has stood beside her throughout it all.

As her youngest sister, watching Eileen’s journey has brought back memories I thought I had buried. I recognise the changes. I understand the losses. I know the heartbreak of watching someone you love slowly change.

Sometimes, when I look at Eileen, I am taken straight back to being that young girl watching Dad.

Except now, it is my sister.

Someone I grew up with. Someone whose memories, independence and relationships are being altered by the same disease that changed our family forever.

But there is an important difference.

With Eileen, I have had the privilege of seeing her face Alzheimer’s with awareness, courage and determination. I have watched her continue to speak, advocate, educate and live her life despite the disease. And I have watched her husband stand beside her, learning, supporting and advocating alongside her.

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Dad’s illness taught us what it was like to face Alzheimer’s with almost no understanding or support. Eileen’s experience has shown me what can happen when knowledge, research, awareness and advocacy become part of the journey.

Alzheimer’s may change the way we know someone, but it does not take away the person they are. The person is still there; it is our relationship with them that changes.

That lesson has become especially important to our family.

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Making Memories While We Can

As four sisters, we want to make the most of the time we have together.

As often as we can, we take Eileen away for a few days, usually a couple of times a year, and make time to simply be sisters. We try something different, go somewhere new, laugh together and enjoy each other’s company.

These times are incredibly precious.

We know Alzheimer’s is changing things, and we cannot predict what the future will bring. So rather than focus only on what the disease may take away, we choose to focus on what we can still share.

We are four sisters, and we want to keep creating memories together for as long as we can.

Then a few years later, Alzheimer’s entered my life once more, but this time through someone who had become incredibly important to me.

My father-in-law had been diagnosed with Alzheimer’s shortly before his son, me ex-husband, passed away. After losing my own father, he had become a father figure in my life. He could never replace my Dad, but I loved him as though he were my own father and he often told me that I was the daughter he had never had. Our relationship was very special to both of us.

So, when my ex-husband passed away, my father-in-law was already living with the early stages of Alzheimer’s, and he was suddenly faced with the devastating loss of his youngest son. His wife, my mother-in-law, was also in her mid-90’s and increasingly unwell. Wanting to be there for them both, I stepped into care for them during an incredibly difficult time.

I was grieving the loss of my ex-husband while watching two elderly parents grieve the loss of the son.

After his son’s death, my father-in-law’s memory loss and confusion became much more pronounced. At the same time, his wife’s health was failing, and she eventually had to be taken into care. He struggled to understand why his son was no longer there and why his wife was no longer at home with him. No matter how many times I explained what had happened, the information would quickly disappear from his mind, and he would ask the same questions again and again. He was losing the two people who were at the centre of his world, yet Alzheimer’s was making it almost impossible for him to understand or process what was happening.

Sometimes he would become angry when I could not give him the answers he wanted. When he was suffering from UTI’s, his confusion and distress became even more intense and at times he expressed a desire to end his life. I was grieving too, while trying to support two grieving parents and there were times when the weight of it all felt overwhelming.

I watched helplessly as Alzheimer’s affected his ability to understand what was happening around him.  He could not process the loss of his son, nor why his wife was no longer at home. He was experiencing one loss after another, but the disease was taking away his ability to make sense of those losses.

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It brought back the painful memories of my own father and reminded me that Alzheimer’s does not simply take away memories. It can change the way a person understands the world, alters relationships and deepens grief, affecting not only the person living with the disease but everyone who loves and cares for them.

Then came one of the most distressing days of that whole period

My father-in-law was incredibly angry with me and with everyone around him. He could not understand why his wife was no longer at home and became convinced that we were deliberately keeping her away from him. No matter how many times I tried to explain that she could no longer come home because her mobility had deteriorated so much and she now required a level of care that we simply could not provide at home, he could not understand or accept it.

His anger and confusion became so overwhelming. That day, he was so distressed that he began looking for ways to take his own life again. He would step towards the busy road, seemingly wanting to walk into the traffic or so he said. And he searched for things he could use to harm himself, including looking for a pipe that he could attach to the car exhaust. 

I was getting rather terrified.

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I was also deeply upset by his anger towards me. I knew that, in his mind, I was somehow responsible for keeping his wife from him - despite visiting her nearly every day- yet there was nothing I could say that could make him understand that this was not a choice we had made. His Alzheimer's had taken away his ability to understand the reality of the situation, and I was the person standing in front of him trying to explain it.

I knew I could no longer manage this situation on my own, so I contacted his sons and asked them to come and help. That was the turning point.

His eldest son, who held Enduring Power of Attorney, became involved. Rather than offering to help me manage Dad, he told me that I either had to deal with the situation myself or he would call an ambulance and have Dad taken away.

I was already so distressed and overwhelmed that I knew I could not give Dad the care and support he needed that day (and I suspected he also had a UTI), but I felt that help was not being offered. I also knew that his other son wanted to help, but the eldest son would not allow him to become involved.

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It felt as though I had two choices: somehow “suck it up” and continue dealing with the situation I knew I could no longer safely manage or have an ambulance called and Dad taken to hospital. Eventually the decision was taken away from me, and he called to say an Ambulance is on its way.

At the time, I believed they would take Dad to hospital, help settle him down, check him for a UTI and treat him and then bring him home.  I never imaging that asking for help in a moment when I was frightened and overwhelmed would mean that I would never again have the opportunity to care for him in his own home.

That realisation came later, and it was devastating.

When Dad was taken away, I didn’t just lose the ability to care for him. I lost a part of my relationship with a man who had become a father to me. I had cared for him though the loss of his son, his confusion, his grief and progression of his Alzheimer’s. I had tried to keep him safe and reassure him when he could no longer understand what has happening around him.

And then, suddenly, I was no longer allowed to do that.

His eldest son, as the person holding the Enduring Power of Attorney, made the decision that Dad would remain in care, despite the hospital saying he could come home if he had 24hr care. Despite how deeply this hurt me, there was nothing I could do.

I felt heartbroken, powerless and lost.

What made it even harder was knowing that the decision had followed a moment when I had been desperate for help. I had not wanted Dad taken away; I simply wanted someone to help me care for him.

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It was another kind of grief, not only grieving the changes Alzheimer's had already brought to a man I loved but grieving the loss of my role in his life while he was still alive.

I had experienced that feeling before with my own father: the painful realisation that Alzheimer’s can take someone as you knew them, away from you, piece by piece long before they die. But this time the loss felt different. This was a man who had become a father to me, who had always told me I was the daughter he never had and all I wanted was to be there for him, just as I had wished I could have done more for my own Dad.

And now, once again, Alzheimer’s had created a loss I could neither prevent nor control.

This experience made me realise once again that Alzheimer’s does not simply steal memories, it changes relationships, deepens grief and affects everyone who loves and cares for the person living with it.

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Now, there is another part of this story that I find difficult to say out loud.

After living through Alzheimer’s with my father, watching my sister live with it for more than ten years, and experiencing it again through my father-in-law, I sometimes wonder: what if one day it is me?

I know too well what this disease can do. I have seen a person's personality disappear in pieces while their body remains in front of you. I have seen the confusion, the loss of independence, the changes in personality and the inability to recognise the people who love you. I have witnessed the heartbreak it causes for everyone around them.

And sometimes I think about my children and grandchildren and wonder what it would be like for them if I were to develop Alzheimer's.

I fear that one day they may have to experience what I experienced with my father, watching their mother or grandmother slowly change while I am still alive. I fear forgetting their names and faces, the special moments we have shared and the memories we have created together. I fear becoming dependent on them and watching them take on the role of carer when I have spent my life wanting to care for them.

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Most of all, I fear that they may begin grieving for me before I am truly gone, just as I began grieving for my father many years before he died.

That thought is incredibly painful because I know firsthand how much that kind of loss can hurt.

But I also know that I cannot allow fear to take away the life I have today.

I cannot know what the future holds, and I refuse to let the possibility of Alzheimer’s rob me of the present. I want to make memories with my children and grandchildren while I can. I want to laugh with them, tell them my stories, hold them close and remind them how deeply they are loved.

I want them to know the person I am today, so that if life ever changes in ways none of us can control, they will have those memories to hold onto.

And although I carry this fear, I am also incredibly grateful for how much has changed since my father was diagnosed.

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When my father became ill in the 1980s, families were largely left to navigate this devastating disease on their own. There was so little understanding, information or support. We were trying to make sense of something we barely understood, often with knowing where to turn or what help was available.

Today, there is far greater awareness, education, support and access to resources for people living with dementia and the families who care for them. We understand much more about the disease, and families have more opportunities to seek help and connect with others who understand what they are going through.

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If Alzheimer’s ever does become part of my own story, I hope my children and grandchildren will have something I did not have when my father became ill: knowledge, support, understanding and people around them who know how to help.

Most importantly, I hope they will remember to look beyond the disease and remember that, even when memories fade, the person they love is still worthy of dignity, patience, kindness and love.

Perhaps that is one of the greatest lessons Alzheimer’s has taught me.

We cannot control how long our memories remain or what tomorrow may bring. But we can choose how we love people today. We can make memories while we have the opportunity. We can talk openly, prepare for the future and ask for help when we need it.

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For years, I thought Alzheimer’s was something that happened to my father.

I understand now that it happened to all of us.

It changed my mother.
It changed my sisters.
It changed me.
It changed our family.

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I have experienced Alzheimer’s as a daughter, a sister, a daughter-in-law and a carer. I have watched it take away independence, identity, memories, relationships. I have seen it create grief long before death and take away precious opportunities that can never be replaced.

I will always carry the sadness of never truly knowing my father as the healthy man he once was. But I also carry his memory, his love and the lessons his life left with me.

I cannot change what Alzheimer’s took from my family.

I cannot give Mum back the years she spent caring for Dad.

I cannot have the father-daughter relationship I missed.

I cannot change what Alzheimer’s is taking from Eileen.

I could not save my father-in-law from the confusion and grief that followed the loss of his son.

And I cannot control whether Alzheimer’s will one day become part of my own story.

But there are things I can do.

I can remember the people they were beyond their diagnosis.

I can speak about the reality of dementia - not just the memory loss, but the impact it has on relationships, carers and entire families.

I can honour those who have walked this journey before us.

And I can choose to make the most of the time I have now.

That is why my sisters and I make the effort to visit Eileen regularly, take her away, experience new places and create memories while we can. We know we cannot predict what the future will bring, so we choose to focus on what we can still share.

It is also why I treasure every moment with my children and grandchildren. I do not want to spend my life worrying about what might happen one day and miss what is happening in the here and now.

My father’s story ended in 1994.

My father-in-laws story ended in 2023

My sister’s story is still being written.

And mine continues alongside hers.

Through all these experiences, I have come to understand that Alzheimer’s does not happen to just one person. It touches everyone who loves them. It changes relationships, alters family roles, creates grief long before death and forces us to find new ways of connecting with the person who is still there.

But I have also learned that love does not disappear when memories fade. Sometimes it is found in a smile, a familiar look, a touch, a shared laugh to simply being together.

That is what I want to remember.

I cannot change what Alzheimer’s took from Dad. I cannot give Mum back the years she spent caring for him. I cannot change what it is taking from Eileen. And I cannot know whether one day it will become part of my own story.

But I can choose what I do with the time I have now.

I can remember the people behind the disease.

I can speak openly about what Alzheimer’s does to families.

I can honour those who have walked this journey before us.

I can remind others that even when memories disappear and relationships change; the person we love is still there

And if telling my story helps another family feel less alone, encourages someone to seek support or reminds someone to treasure the people they love while they can, then something meaningful can come from all that pain.

This is why I tell my story.

I tell it for Dad, for Mum, for Eileen, for my sisters, for my father-in-law and for all those who have cared for and loved someone with Alzheimer’s.

But most of all, I tell it for the families who are living this reality now.

I want them to know that they are not alone.

And I want them to remember something I wish I had understood when Dad was ill:

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Look beyond the disease. The person is still there. Love them for who they are today, while remembering who they have always been.