When we learnt Bob had a form of dementia, we didn’t understand what was to come. We knew he wouldn’t be able to work and may become mute, but I remember joking that I talked enough for the both of us. But like many dementias, everything was taken away. His ability to eat, his mobility, emotional capacity, independence and worst of all, his dignity, were all progressively taken. Dementia stole from the kids their father and from me, my husband.

I actually remember the day I realised that - I am no longer his wife - I am his carer.

People sometimes think that dementia is an inevitable part of ageing… that you simply become more forgetful and confused but live to your normal life expectancy.

I cannot be clearer than this – Bob died of dementia, aged 53. ‘What do you mean he died of dementia?’ or ‘I had no idea it took your life’ were common reactions from friends and family. This has caused me to often wonder – what did people think we were going through? Did they think we just had to correct Bob when he got a bit muddled up? No, let me tell you what it was like.

The tragedy of dementia at 47

He needed to be spoon-fed pureed food.

He couldn’t talk, articulate feelings like sadness or loneliness, tells us he was sick, in pain or that he had wet himself.

He couldn’t leave his bed. He couldn’t walk. He wasted away to 45kg and towards the end, each breath was almost impossible.

His own grandchildren were very cautious around him.

He couldn’t show love.

It is often joked men in their 40s and 50s buy sportscars or fast motorbikes. The opportunity for Bob to do the same was snatched away.

I had decided that we could no longer care for him and together we visited a centre for people with early onset dementia. He would have been one of the youngest there. The minute we entered the facility I sensed his agitation. He made a b-line for our car… clearly understanding on some level what we were doing there… and it scared him. Later I said, ‘Don’t worry Bob, I’m not leaving you here,’ and immediately he was at ease. I knew then that home was where he belonged regardless of the challenges that lay ahead. It was also a powerful reminder of how afraid he could still be.

During those dark days, many people simply stayed away. The hundreds of people that came to his funeral showed he was loved. But perhaps not feeling comfortable visiting or wanting to be a burden to me, we didn’t have hundreds of visitors. Please, if you’re reading this and someone you love has dementia, take the time to visit them… it is very important to do so.

We lost Bob in February this year. Even now, it is with tremendous guilt that I reluctantly acknowledge it was for the best.

Of course, what is for the best was for it to never happen.

Bob leaves behind three beautiful daughters and two gorgeous grandsons. The best way to describe how Stephanie, aged in her 20s feels is cheated… cheated that she’s lost her dad and her two boys, Hayden and Mason, have lost their grandad. Amy who is only 14 has had to grow up fast, and says birthdays, Father’s Day, buying her first car and perhaps being walked down the aisle is when she’ll miss him the most. She seems so much older than 14… probably because she’s lived through things only few girls her age have. Poppy aged only 9 breaks my heart. She’s only really ever known her daddy to be sick, and feels left out at seeing other kids with their dads. She says it’s unfair and she’s right.

For me – Bob was the man I’d chosen to build a life with, and now he’s gone. Life goes on but it is very different. I’m reminded everyday of him in lots of little things, but you know what reminds me the most of him? The girl’s eyelashes….so long and dark, just like their daddy’s.

This Christmas is our first without him and it’s going to be hard.

But, we have hope. We have hope that research advancements will be made so that one day families will not have to go through what we have. We were so pleased to be able to donate Bob’s brain to the Sydney Brain Bank at NeuRA, as we know his legacy will live on in research that will one day stop this awful disease in its tracks.

Thank you for reading. Remember, don’t stop visiting people with dementia, and please give what you can to support research into dementia and other disorders of the brain and mind.

Lisa