Frontotemporal dementia is not what most people picture when they hear the word dementia. It usually arrives between the ages of 45 and 65. It changes personality, behaviour and language long before it touches memory. Families are often told for years that it is stress, or depression, or a difficult marriage.
Robert, Olivia and Ava faced their challenge with incredible bravery and strived each and every day to keep Tina happy and surrounded in love. Their story is Hollywood worthy, and we will share more of that in time. Our priorities shifted – our focus became softening the journey for Tina, ensuring she was comfortable and helping Olivia and Ava have as gentle an experience as possible as they faced losing their Mum. Alongside the emotional toll, the financial pressures were immense. Tina lost her income and Robert had to stop working to care for her around the clock. The strain of balancing a mortgage, household costs, supporting two teenage girls and planning for their future was overwhelming.
We learned that when life is dominated by FTD, things that may seem small from the outside can mean an enormous amount. The kindness we were shown by family, friends and our community is something we’ll never forget. We are lucky to live where we do, with the support we have and so we want to pass forward the generosity we were shown to help families who are less fortunate. Tina was always kind – never, ever unkind – and that was her greatest legacy. Today, we continue to multiply that kindness, sharing it with families who need it most, so that Tina’s spirit of love and generosity lives on.