Stephanie's story: the importance of preserving memories

In the final months or weeks of your loved one's life it can be easy to forget about preserving memories and creating legacy.

But for Stephanie, who cared for her mother who had a neurological condition which had no treatment or cure, creating voice recordings of their conversations proved to be one of the most precious things they did together.

Stephanie's story: the importance of preserving memories

In the final months or weeks of your loved one's life it can be easy to forget about preserving memories and creating legacy.

But for Stephanie, who cared for her mother who had a neurological condition which had no treatment or cure, creating voice recordings of their conversations proved to be one of the most precious things they did together.

Mum loved to laugh

My Mum, Lorraine, was a beautiful person inside and out. She had an incredible smile and loved to laugh. Her laugh was infectious and once she started, everyone around her joined in.

She was a keen royalist and we took to calling her Lady Lorraine or the Queen. She thought this was fabulous and sourced a sign that read, ‘The Queen is not accepting an audience today’ which I now have in my home - it makes me smile every time I see it.

Things progressed slowly for Mum. It began 5-7 years before her death, from offering her an elbow when walking, to using a walker, then a wheelchair. Mum also began to lose interest in the things that had once given her joy like hosting events or attending social activities.

There was a period where Mum saw her GP, who diagnosed her with depression and prompted her to see a psychologist. She was also encouraged to see specialist after specialist where diagnoses of MS and Parkinson’s were applied.

In 2014, after a family friend referred us to Professor Dominic Rowe, Mum was diagnosed with Cortico-Basel Syndrome. Professor Rowe met with my immediate family in his office to explain that Cortico-Basel Syndrome is a rare neurological condition with no available treatment or cure. He encouraged us to enjoy our remaining time with Mum and to make arrangements for Mum to move into an aged care facility as the disease progresses quite quickly.

Mum remained in the family home with Dad until March 2015. I had more flexibility with my job, so I was able to visit a lot. I would help with cleaning, cooking or just sitting with Mum while Dad worked as it was unsafe to leave Mum on her own in case she fell, had an accident, needed to go up or down stairs etc. Mum needed support with things like showering and getting dressed, so I helped with that too. We would go to the movies, matinee theatre, drive around the local area, get our nails done.

It was at this time that I had the idea to start recording Mum and I talking.

In March 2015 Mum began respite care at an aged care facility that turned into full time care. My Dad and I took Mum to the aged care home and set her room up … Dad still refers to this day as one of the hardest days of his life as he knew Mum wouldn’t be going back to their home. My goal and focus was to ensure Mum was comfortable and had a lovely space to live in. Mum had a strong faith, she was with her own mother when she died in palliative care, she was never scared of death.

I visited Mum the day before she died, we watched ‘To Kill a Mockingbird’. She was having trouble sitting upright in her wheelchair, so I sat behind her gently holding her shoulders back so she could watch Gregory Peck on the screen. He always reminded her of her own father.

The importance of lasting memories

Before Mum moved to the aged care home, I was visiting her every second day. I was very aware that we would have limited time, especially after her diagnosis, so I wanted to create lasting memories. Mum loved to talk and laugh so one day I just asked if she was OK with me recording our conversations. I suggested her grandson, Charlie, might like to hear them when he is older. She didn’t mind at all.

The recordings feel more personal to me than the home movies we have, as they were recorded towards the end of her life.

I feel the more time passes, the more grateful I am that I have them and that I was able to spend that time with Mum. I listen to a lot of podcasts while walking, driving and cooking, so I treat them in the same way. This most recent Mother’s Day, I wanted to hear Mum’s voice, they were a lovely reminder of our conversations, laughter and to hear her voice.

My brother heard a snippet of them over dinner one night and referred to them as a gift. My Dad hasn’t asked to listen to them but was impressed I had the idea to record some conversations with Mum. Dad prefers to watch old home movies of Mum.

Advice for my fellow caregivers

Make the most of every moment! There will be some really hard and trying days where it feels relentless and sometimes unappreciated. Find joy together in little things, like a piece of music, photo albums, the sun on your face, a funny video.

Take care of yourself so you can be there for your loved one and make the most of creating lasting memories - which is a treasure you’ll always be able to reflect on once they have gone.

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