Written by Elizabeth Arena – Community Contributor
I have always had a very close relationship with my grandparents; they have always been a major part of my life. When I started to notice changes in my nanna (such as repetitiveness and forgetfulness), it was very hard to comprehend that this may only be the beginning of a series of life-altering changes that would affect the lives of my whole family. As hard as it was for me, it was even harder for my pop. He refused to accept that the love of his life may suffer from the very same disease that toiled away at his mother. It was only through my mother’s love and persistence that my pop to came to terms with the reality of the situation and allowed my nan to be formally diagnosed with Alzheimer’s dementia. This was the start of our journey with dementia in our lives and learning about caring for dementia patients at home.
Adjusting to the notion that life would never be the same with my nan took a toll on all of us. To add further anguish to our tale, not long after that we lost my pop. The devastation of this loss hit all of us hard, but it was hardest on my nanna, and as such pushed her further into her dementia.
It has been ten years now since we lost my pop and nan has been living with my family and me for in-home care for dementia patients. The road with dementia has been long and bumpy as my nan is now really advanced in her dementia. There have been many stages along the way, the first being grief for all of us. My nan struggled to deal with the passing of my pop as she was reliant upon him for everything. There was also a real understanding back then that she was in fact forgetting, and something within her was not right. As time passed nan became unsettled; forgetting that she lived with us, she packed up her bags and planned her escape. Next came the constant need for attention. Nan would follow my mum like a little lost lamb and if my mum took a phone call or went to the bathroom nan would become frustrated and pack up her bags once again. Role reversal is a further struggle, as it is hard to look after an adult who knows they are an adult but has a childlike nature. Caring for dementia patients at home can be a real adjustment, though in-home aged care services can truly help with that.
The hardest part was when nan did not recognise us. Nan is sometimes able to recall our names, but not always our relationship. As nan and I always had such a close relationship she started to focus in on me in her dementia state, and I became “that girl.” It was hard for me to not have my nanna always recognise me, especially as I was dealing with my own health issues at the time. Little did I know that things could still progress further. Not only was I “that girl”, but my nan was convinced my parents were not my parents and that I did not live in my own house. With this nan would actively hunt me down trying to kick me out of the house. It would be lying to say that the things my nan said and did in her dementia stage didn’t hurt, because they did. However, with time you come to the understanding that it is dementia talking and not my nan. When I put myself in her shoes I realised it must be so hard to be so confused. I only needed to look up at her and see the look on her face to see that was true.
I am lucky though, because through all the hard times, good times and bad times, on the whole, my nanna has remained the same loving and caring person she always had been. Nan could have me in tears one minute and comfort me the next. My nan may not always know who I am, but she has been able to recognise my struggle with my health and has always been there to comfort me. I always held on to that love and comfort, as that is my true nanna. We have been able to relive happy memories, and for me create new happy memories.
The years continue to roll by with dementia, and our relationship may have changed, but I have come to realise that any obstacle can be overcome with a little patience and understanding. Patience may be a virtue but it is certainly something I had to learn and not something that I was born with. The same cannot be said about my mother. She has devoted herself to my nanna’s care from day one as she learned about caring for dementia patients at home. My mother has selflessly put nans needs above her own and has gone above and beyond to keep nan not only in our home but living happily. Most of the time being the caretaker of a dementia patient is a thankless job, but my mother has done it with grace, love, compassion and understanding. Words cannot express my gratitude to my mother as she has given nan and I the greatest gift: more time. As hard as dementia is, there are also good times and happy times, and no one knows what tomorrow will bring. With dementia, there is only now, so we must live in the moment and cherish every happy time. Nan may not remember all our happy times, but I do, and no one, person or disease, can take that away.