There are currently an estimated 353,800 people living with dementia in Australia. What these numbers don't account for is the daughters, sons, brothers, sisters, lovers, mothers, fathers and friends that are too consumed by the disease that is stealing more and more of their loved ones"with dementia diagnoses predicted to swell to near 1 million in Australia alone by 2050.
The challenges that families face when confronted with a terminal diagnosis of a loved one are hugely complex. These diagnoses mean developing new structures and dynamics as the person they love slowly slips away. It means learning to cope with the highs and lows of setbacks and deterioration, as well as periods of seeming remission. It means dealing with the desperate guilt of simply living life, when the person you love is nearing the end of theirs. It means dealing with the complexities of extended grief, and learning how to develop coping mechanisms to move through the turbulent waves of sadness.
Question: What is Family Garden Life?
Rebecca Searles: It's a lot more than I could have ever imagined. Originally, my goal was to provide a resource centre for families wanting to engage the kids outside in their garden, but it's become much more than that. With the complexities of our fast-paced world we live in, a family garden can be a place to connect, balance, grow and recharge in many different ways. It has become a place of inspiration and engagement, making a difference to the health & well-being of families across Australia. I am very humbled at the highly engaging group of mums we have on Facebook coming together and growing organic produce in their own garden because of the space we have created for them.
Question: What motivated the idea of Family Garden Life?
Rebecca Searles: My dad is my inspiration and has been the reason Family Garden Life came to fruition. I have always found my garden to be a place where I can connect with nature which allows clear thought and a sense of calm. When my dad's dementia took hold beyond my control, my garden became the very place I turned to. Knowing what my garden did for me, and my family, lead me into my business. I think if you ever get the opportunity to do something you love, which can make a difference to so many others, then go for it. I can't change what is happening with my dad, however I know what I'm doing with Family Garden Life is helping others and that's pretty awesome.
Question: Can you talk us through the diagnoses of your father?
Rebecca Searles: I don't think anyone can prepare for a parent getting sick, and dementia is so very cruel. Taking a strong, proud nationalised Australia, like my dad, and reducing him to an existence like this is heart-breaking. At first he started forgetting names of objects, people and places, then he started putting his keys in the fridge and blaming others for his actions. It was always -that thief'. Then he was fixated on money, and I was always blamed for -taking his money'. It broke my heart and gave me anxiety every time I walked in their house. From a father that loved his daughter so much I suddenly became his target. When he started getting really confused, walking outside at night, trying to put the hose into a power-point, it was time to put him into care. In hind sight, I probably should have done it earlier, but if you ask anyone who is in this position, it is the hardest decision to make because you think they know you are doing it, but he didn't. I became his only memory for about 6 months after that.
Question: Were there any warning signs prior to the diagnoses?
Rebecca Searles: I think you know when a family members behaviour changes and looking back it was happening for a long time before we picked it up. We thought it was just his personality, but there were signs going back about 5 years prior to the diagnosis. For my dad, it was being socially inappropriate, making comments that you wouldn't normally say. Repeating stories that he had just told you, losing things and blaming others, and not being able to recall the name of objects, like a pencil.
Question: How did your garden help with the grief of this complex illness?
Rebecca Searles: When you get outside with nature it just calms you down, helps you think through your obstacles, lets you process these things in a quite space. This works for everyone, not just people dealing with major family issues. I see a massive change in my kids when they are outside playing in their fairy garden or pouring water from one pot to another. Nature is calming and so good for your health and well-being. When I fell into a heap, my husband would simple lead me out into my garden and it just brought me back to life. Mother Nature saved me from drowning in this major event.
Question: How does dementia affect your family, daily?
Rebecca Searles: It's always there. I still get anxiety when I think about visiting the nursing home. I know he doesn't know me anymore and that makes me feel unsafe. It's a massive weight of guilt you carry around with you every day. Guilt for putting him into care, for him not being with us, for us not being able to look after him. You feel so sorry for him being reduced to an existence with no quality of life. He was the one who worked so hard to provide for his family and this is what he gets for it. It doesn't get easier, you just get better at living with it. I could never have imagined it would be this hard. Never ever.
Question: What other coping mechanisms did you and your family develop?
Rebecca Searles: A conversation goes a long way. Mum and I talk about him on the way there and on the way back in detail. We talk about how we can't do anything and this is out of our control. We talk about how we couldn't look after him even if he was at home. We reassure ourselves he is clean, and looks ok. The best bit is that he is unaware of what has happened. That's good for him, we are the ones that carry the burden of this disease.
Question: What's next for Family Garden Life?
Rebecca Searles: I have learned a lot over the last 11 months since I launched Family Garden Life. I absolutely love how many mums are finding their gardens and on a path of health & well-being. I want to keep building on this and keep helping mum's grow healthy organic food for their family, and teaching their kids how to do it. This is my direction for 2018. Education and support. I am launching an online course for the mums who need help with the basics of a food garden and our website will continue to grow and support these mums with resources, products and an engaging community. I love what I do, and I know my dad would be very proud of me. That motivates me to keep helping others grow.
Interview by Brooke Hunter