When I first got told my mother had dementia and was terminally I was about 16 years old with very little idea of what that meant. It was 35 years or so ago and we have very little information about it compared to what we have today. And I lived in a small town in India where we didn’t have the access to computers or the Internet like we do now! So, it was a journey that not only shaped my life in many many ways to be the person I am today but also understand that this condition wasn’t so much about one person- it affected everyone around it. In my case, my family, parent’s relationship, our friends, my mother’s job, and my schooling at the time. In fact, it has taken me decades to write about it and share my thoughts such as this blog, as this personal journey has been one of the most powerful ones for me as a carer in my late teens and till I was about 23 years old, when we lost my mother to this condition, at the age of approx 56.

What has inspired me to write is that it is a simple way of reaching out to others who may be on this position and although everybody has a different experience we can all hold hands to share our support as this can change the whole course of how one lives through a very confusing and emotionally charged journey.We do have so much information now and can find all these posts and blogs and support groups, it can be an information overload and one has to think about how to find information that is relevant to you and your situation to make small decisions about yourself and how you are travelling in that space.  This emotional rollercoaster can be shared by talking to your counsellor, a support group where you may have some good connections, and connecting to what is happening around you.  I feel especially proud of Im part of Dementia Awareness Week and sharing this with everyone whom it may help or inspire. This week has a special meaning for me- not just because it helps me to focus on the topic that I relegate to the side in the busyness of life, but also because it connects me to my journey and allows me to reflect on my memories and experiences in new ways that bring a sense of positivity to my life. It is an oasis in the desert of fear and anxiety if you are a carer.  It has been struggle (and you can relate to that if you have been in these shoes in any way), that one cannot see much positivity in a condition that can lead to such deterioration and loss. At least, I did not and have often thought why we still have these conditions when Man has reached the Moon? It inspired me to study further in Neuroscience and has fostered a life long passion for understanding how to work with our neural networks (no brain, no me as far as I can see).

This week I want to share the message that this too shall pass. Looking back, I did not often see that apart from a sense of how to get through the day and try to see what the planning needed to be like. Thats mostly all I did and there were new things to contend with as we progressed through the maze. I went to a birthday celebration at a nursing home for advanced dementia residents at the request of the family and what struck me was the sense that they could celebrate and share the memories of beautiful family moments. The family visited every day in turns and it became quite a focal point of their daily life. When the time came for them to stop visiting, I was very moved by their comments to continue to visit the nursing home and help others with meals and outings as they had made these incredible connections through their time there.

My physical journey as a carer has passed and many of the memories have receded in my mind, but as I go down memory lane (and I feel fortunate that I am able to do that, more so now having been a carer than ever before and I am ageing with my own fears) the emotional journey is ongoing in new ways. I want to share that sense of appreciation of the gift of knowing who people are around me, sharing the small joys with my family, and building memories for the future. I could not have had that deep personal experience without the experience of deeply understanding what it could be like without that ability. For that alone, I am grateful to my experiences as being a child who looked after their parent with dementia. Although mama you may not have known who I was physically towards the end, the love and the connection will never end. What one cannot hear in words one can feel through a million other ways (the way your eyes lit up when you saw me or a big grin when I said something silly which you always found funny) and that can never be taken away from you or me and my message to everyone here today reading this about the person you love.

Here are some links to help support people caring for loved ones with Dementia:

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