When Dementia Enters Your Family: Why I Created Our Dementia Journey Journal

Nobody ever expects dementia to become part of their family story. Like many people, I had heard about dementia. I understood the basics. But until it happened to my dad, I don't think I truly understood what it means to watch someone you love slowly become someone they no longer recognise themselves. Dad's journey began during the Covid lockdowns. Thankfully, he and his close friend had decided to support one another through those difficult months, keeping each other company while the world shut down around them. It was his friend who first noticed that something wasn't quite right. Little things, small changes, the sort of things that are easy to dismiss at first. He would stick whisky in his cup of tea, instead of milk for example (Some may say that’s normal!)

The Diagnosis

Dad underwent a series of tests. Unfortunately, he failed them all. Further investigations and a brain scan eventually confirmed that he had vascular dementia. Because of the Covid restrictions at the time, it was incredibly difficult to be involved in those early appointments. Only one person was allowed to attend, which meant family support was limited just when we needed it most. It felt as though we were trying to navigate something frightening and unfamiliar whilst the world itself was already turned upside down.

Watching Someone You Love Change

Dad continued to live with his friend, who cared for him as best she could. As time passed, however, his needs became greater than one person could manage alone. Dementia gradually took away his ability to do the simplest things. He couldn't remember what he needed to do. Sometimes he didn't remember that he needed to do anything at all and that was incredibly hard for his friend to witness. When the rules relaxed and I was allowed to be much closer to him, inside the house, I was shocked at how much he had changed. Even his physical appearance was different – he didn’t look confident at all – just worried.

My dad had always been my rock. He was strong, intelligent and capable. He was also a lifelong musician and a talented guitarist. Music had been such an enormous part of his life. Yet eventually he could no longer remember how to play. Watching him hold a guitar without knowing what to do with it was perhaps one of the hardest moments of all. It felt as though dementia was slowly taking away the person I had always known.

Finding the Right Support

Eventually, we made the decision to employ a live-in carer. The gentleman we found was wonderful. He cared for Dad with kindness, patience and dignity, allowing him to remain in his own home, surrounded by familiar things and familiar memories. As a family, we continued to visit regularly. Knowing Dad was safe brought us enormous comfort. One of the things his carer did exceptionally well was keep detailed notes.

He recorded:

• Good days.
• Difficult days.
• Changes in behaviour.
• Appointments.
• Progression of symptoms.
• Things that had happened during the day.

As family members, those notes became incredibly valuable. They helped us understand what was happening when we weren't there and they gave us insight. They helped us notice changes and they provided a record of Dad's journey.

The Emotional Side Nobody Talks About

Caring for someone with dementia is exhausting. Not necessarily physically, although it can be. But emotionally. It is difficult to explain the sadness of watching someone who once knew you so well become confused and uncertain as the person is still there but they are changing.

There can be guilt, frustration, sadness, exhaustion, sometimes even anger. But often there is nowhere to put those feelings. You may spend your days being strong for everyone else while quietly struggling yourself. I honestly don't know how people cope entirely on their own.

Trying to Keep Up

Alongside the emotional side came the practical side. Hospital appointments, Doctor's appointments, medication changes, questions, concerns, changes in behaviour, new symptoms, information, So much information. Trying to remember everything became difficult, it just went on and on. Trying to understand how the disease was progressing became difficult. Trying to remember questions for appointments became difficult and yet all of these things matter.

Why I Created Our Dementia Journey Journal

After losing Dad three years ago following a battle with pneumonia, I found myself reflecting on everything we had experienced. I thought about the notes his carer kept, and I thought about the things we struggled to with. I thought about the emotional toll on everyone involved. I realised that carers need support too. The journal was created with all of these things in mind.

It provides space to:

• Record appointments.
• Track changes.
• Note symptoms.
• Keep important information together.
• Reflect on emotions.
• Recognise when the caregiver themselves may be struggling.

But it is also about the person living with dementia. There are activities to share together. Space to record memories and opportunities to celebrate the person behind the diagnosis. Because dementia may change someone, but it does not erase the life they have lived or the person they have been.

For the Caregivers

One thing I learned through Dad's journey is that caregivers often put themselves last. They carry enormous responsibility and they worry constantly. They rarely stop and they often have nowhere to express their own fears, frustrations and sadness. This journal gives them permission to do that. To write and to reflect, remember and to acknowledge that this journey affects them too.

Final Thoughts

Dementia changes families and it changes routines. It changes relationships and sometimes it changes the person we love in ways we could never have imagined, but it does not change the memories and It does not change the love. It does not mean that anyone should have to navigate this journey alone. Our Dementia Journey Journal was created because of my dad. Because of the notes his carer kept and because of the things we struggled with. And finally, because I hope that it might help another family feel a little more supported during one of life's most difficult journeys.

To view 'Our Dementia Journey', click here