I am a carer for my wife, who has dementia. I’m not quite sure when it started to come upon her, but I first noticed it in March 2022. It’s now July 2026. Fortunately, we still know each other well, and she knows me and who I am, despite her Dementia. Occasionally, she loses track of who I am, but quickly it comes back to her – and I am ever so glad that the recognition has only ever temporarily faded. There was a time earlier on when the “sundowning syndrome“ got hold of her, and she lost contact with me, and I became a stranger and had to spend time outside on several occasions.

Fortunately, that phase hasn’t continued. It may be because we changed the house lighting so there is no light directly in front of her at night, but the light is always to the side and in the back. We have two mood lamps in our bedroom, but they sit on side tables with only a soft glow, and the main lights are switched off. We also make a practice of going out, and I’ve not come home after dark if at all possible. To be in by sundown means that daylight prevails– albeit at a soft level because of the late afternoon – and that seems to ensure that any mood changes based on life and dark do not happen.

That said, on many occasions, I become her “dad“, “Richard – her deceased brother “, “Roger – I do not know who Roger is –“, and for the first time today, somebody called “Tamba“.

But at the end of the day, I am me, and she is her, and that seems to hold together pretty well.

On display in her eye is a picture of our wedding from 56+ years ago, and we use a Frameo, which pulls up pictures of our children and others we know.

I think that helps.

But I’ve just spent time down in the garden, and when I’m downstairs she knows where I am; that does not stop me from wondering what’s in her mind, how she is being sailed in her head by terrible Dementia thoughts, and exactly what is transpiring. I so wish I could read her mind, for that might help me better understand and support her at this terrible and challenging time in her life.

We used to garden together, and sometimes she comes down to see what I’m doing and to help in a few different ways, but often that is not the case, particularly when the weather is hot and off-putting.

So today, as I’ve done some gardening, I’ve just wondered and hoped that she is okay and that the medication she takes is helping. And I hope that I can be the person I want to be as her carer, for, quite honestly, the only thing that motivates me to stay alive these days is the need to nurture and care for the one I have loved for so many decades.

If Margo were gone, I would have no compunction – particularly in the Northern Territory where VAD does not apply – but to go out and become one of the nine or 10 suicide victims of any particular day in Australia.  

By then, I will have tried my best and will continue to do so for as long as is necessary – and as I do day after day for the wife who is my best friend and lifelong partner. But if she predeceases me, then the vacuum beyond is one I will not confront.

I love my nuclear family of children and grandchildren. They love us, but they have their lives to lead, and I will not entertain being an encumbrance upon them.