 Hi Coch-a-lora, jig, jig, jig. Have you ever seen a monkey riding on a pig? Well, have you??? Every birthday celebration we had was something to look forward to. Right up to her last year, it was something very special at family gatherings. We would sing happy birthday, and then Mum Mum would, light up and sing “why was she/he born so beautiful, why was she born at all? Because she had no say in it, not say in it at all. Every time with out fail, she would then go on and then say as fast as she could. “Hi Coch-a-lora, jig, jig, jig. Have you ever seen a monkey riding on a pig?” “Well, have you???” She would ask. We would all laugh and join in. Everyone looked forward to this part of the gathering. This continues at birthday celebrations and is a wonderful way that my beautiful Mum Mum is still included and remembered at special times. As difficult and challenging it was caring for Mum Mum at times, it was these occasions that were very special. Full of love and joy and so much fun. You know over the last month, When I have been reading the journal that I kept all of those years ago, it has been an emotional ride of remembering just how challenging it was being a carer. How often lonely and isolating it could be. And there is no way I would have changed this. Yeah, maybe done some things differently, but that is the funny thing about hindsight isn’t it? The challenging times were challenging and difficult. It was very hard emotionally especially in the beginning as we started to notice the changes in this beautiful, strong and resilient woman. And the special times were ever so special, those moments of cheekiness, the singalongs. Oh my god the singalongs, Pack up your troubles in your old kit bag … is one I remember very well that we would sing quite often. And although she wasn’t an overly religious woman, she would often sing – Jesus loves me, this I know. On reflection I wonder it if was a kind of comfort for her as she would often say. “Somethings not right...” It was a different time back then. There wasn’t the medication there is today to manage this and so much has changed in that time around dementia awareness and understanding the body and brain. This week is my birthday and my beautiful Mum Mum will be in my heart, in my laughter and the fun we have together as a family. September is Dementia Awareness Month, I am sharing my experience with excerpts of my journal that I kept and that was an important tool for my wellbeing throughout this time. It is my heart felt hope that my small action of sharing will make a big difference and contribute towards building an understanding of some of the challenges families face as this condition brings about change in a person you love. Wishing you Wellbeing. Leanne. 
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 September is Dementia Awareness Month. I am sharing my experience with excerpts of my journal that I kept, and that was an important tool for my wellbeing throughout this time, while caring for someone I loved. Research suggests that every three seconds someone in the world develops dementia. It is my heart felt hope that my small action of sharing will make a big difference and contribute towards building an understanding of some of the challenges families face as this condition brings about change in a person you love. Mum Mum called my boys the “little fellas” my daughter came along the year she passed away and she just loved them all so much. Every morning they would sit together and have breakfast and we all had fun throughout the day. Some days weren’t so easy though. Like this day. How do you explain to and 2 and a 3-and-a-half-year-old they could not do what she was asking of them, there were tantrums brought on from this confusion? It was not easy as in their eyes she was an adult and how do you even start trying to explain this to children this little. I don’t know how I stayed calm, I just did. I just knew that fighting the issue wouldn’t help. I learned to remove the kids from the situation as best I could. This type of situation didn’t happen all of the time but when it did, it was very hard. I knew she couldn’t help it, and I tried my best to explain to my kids what was happening and somehow, they got it. January 20 1996 This evening Mum Mum was rounding up the boys, telling them it was time to go home. I tried to discreetly tell them that they couldn’t go with her. How could I explain that she couldn’t look after two little boys properly? Mum Mum heard me tell the boys, they couldn’t go with her, and was confused by them becoming upset which added fuel to the fire. I asked Josh who had become upset to calm down, in his frustration he threw a stone at me. I told him off. Mum Mum then set upon me, slapping me in the head and on my arms. I picked up my boys and bought them into the house in an attempt to diffuse the situation. She came into the house shortly after still agitated and confused. I explained calmly that they were my children “You Liar” she said and hit at me. I asked her not to do it. The hardest thing in this situation was I was unable to cry, I was unable to show my children I had feelings. I was numb.    September is Dementia Awareness Month, I am sharing my experience with excerpts of my journal that I kept and that was an important tool for my wellbeing throughout this time.
It is my heart felt hope that my small action of sharing will make a big difference and contribute towards building an understanding of some of the challenges families face as this condition brings about change in a person you love. According to Dementia Australia, Dementia is the umbrella term for a number of neurological conditions, of which the major symptom includes a global decline in brain function. Here is my journal entry from September 7th, 1995. Oh boy! What a day this is turning out to be, we have been out driving all over town. Mum mum wanted to see her mother. I offered to take her to the cemetery to visit her grave. No! She said, I…want … to …see… my… mother. I realised very quickly that if I said she was no longer here that it would agitate her, so I chose to validate her wish. We got in the car, her in the front and the dog and my boys in their seats in the back. I asked her to show me where to go. We drove up the road with no real direction and ended up in the next town. “Where to now Mum Mum?” I asked. There was no sense of direction, so I continued on with her looking out for her mum and chatting to the boys as we drove past the cows. I drove a different way home and parked out the front of her home that she no longer lives in. We talked about it for a short while and then she said “but I don’t want to be here, I’ve got to get home to my mother in Houghton, I told her we were in Houghton and she replied “Yes, but this isn’t the real Houghton. She was adamant she had to be some place else. So, I went home go the nappy bag for my baby and off we went on a longer drive to the Gully, we went to the post office and paid some bills, got some petrol in the car and then came home. We went inside had a cup of tea and now every thing is Ok. Mum Mum was born and raised in the township we lived in, so I never thought of it as a figment of her imagination I figured she might be remembering. From experience and reading, I learned that if I made a fuss or disregarded what she was saying, then, it would get difficult. I learned to validate as best I could. The alternative would upset her, she would become disorientated and agitated. So I did what she wanted, as best I could. Wishing you well Leanne  This is my beautiful Mum Mum. My grandmother and my friend. She was always a well-dressed woman who cared about her appearance and loved a bit of cheeky fun. She was a significant adult in my life. I spent quite a bit of time with her, before and after school and when my parents worked. We developed a special bond. She would knit and crochet me things and cook delicious treats. She did this for all of her grandchildren. My most favourite memories are those where she would brew a pot of tea and she, mum and I would sit around the table talking tales of times gone by and finding ourselves in fits of laughter that would just snow ball into more laughter. I think this is why I love laughing so much. She was widowed when I was around 6 or 7, living in the country she adored her cats, tendered to her garden, collected eggs from the chooks and chatted to neighbours, many whom she grew up with. She would always come along to school and dance performances. She lived right next door. She was always there for us. She had seen a lot in her lifetime, she had lived through wartime, concerned while her husband and brother were at war. She was part of the community and knitted socks and vests for the soldiers and then witnessed the after effects of war when our diggers returned. She had lived through the depression living off ration tickets to get essentials. A few months old, her daughter (my mum), developed an illness they thought was leukemia and after 12months of hospitalisation she brought her home from hospital, to have her for the last days. She was resilient and always looked for the silver lining. In hindsight I can see when the disease was coming on, the subtle clues were building. Living next door it was normal to have an evening cup of tea together and talk about the day. One evening, she had served up cat food in a bowl. One time she called to say that the kettle wouldn’t heat the water and when we investigated we found the electric kettle with the stove top coil melted into the bottom of it. And sometimes at night, she would knock on the door because she couldn’t turn the light off - she had been trying to turn it off by hitting it with a broom. This strong, caring, fun loving and resilient woman who had taught me so much was changing. All of these symptoms were subtle and over a few years, and it was hard to see this change in her. I remember one day, not sure how to tell her that her hygiene needed tending to. She turned mean and I had never seen her like this, she asked who I thought she was, and I reminded her she was my grandmother and I loved her very much. “You are not” she growled and said some really horrible things that had never before come from this loving and caring woman. This was one of the first hurts and in time there would be more and I would learn that this was not her, it was the disease. It was never an option to place her in care, she had cared for her own parents and granny and done so much for us and others. We wanted her to be surrounded by love and family. I’m not going to sugar coat it. It got pretty hard at times and there were times when we did talk about care options but while we could love and care for her, we did. Little did we know how much we would learn about ourselves and others throughout this time. And that we would care for her to the day she died. More than 425,000 people have dementia across Australia. This number is projected to reach more than 1.1 million by 2056. September is Dementia Awareness Month, I am sharing my experience with excerpts of my journal that I kept and that was an important tool for me throughout this time. It is my heart felt hope that my small action of sharing will make a big difference and contribute towards building an understanding of some of the challenges families face as this disease brings about change in a person you love. You can become a Dementia Friend at dementia.org.au Wishing you wellbeing. Leanne. |
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