My Disappearing World

My Disappearing World…

My name is Kate. I am married and have two sons who are 21 and 22. I was born in 1958 in a small country hospital and grew up in a farming community on Eyre Peninsula. My first career was nursing, specialising in operating theatres. I then changed careers and became a chef. Finally I worked in health care sales.

In 2008, I was working full time, studying a double degree, caring for our school age children and running our home with my husband. Then I was diagnosed with Semantic Dementia, a debilitating and terminal illness that is trying to steal the very essence of who I am.

Dementia diagnosis was difficult, accessing services as a person under 65 was almost impossible, and because of this, support took a long time to come. 

My life has changed in ways that are challenging to understand and difficult to live with. The feeling that my life is slipping away from me is almost tangible and I do sometimes feel cheated. 

Losing my legs and arms or my sight or hearing might be better than this hideous disease.

I cried, almost nonstop, for about three weeks. I used to think ‘if only someone would tell me it is just depression or some bizarre mental illness… anything other than dementia’. It feels as if my soul is being sucked out, little by little, as my world slowly disappears.

Speaking and thinking is more difficult, the search for words, the meaning of words, numbers and equations now a major challenge. It is harder to process information, to know how to act and to respond, how to behave appropriately and to know what to do in normal everyday situations. My photographic memory is gone!

Hallucinations sometimes take over my mind, and the feeling that these things are real is momentary, but startling none the less, increasing the feeling of madness creeping into my soul. I am hearing things that are not there, becoming fixated on things, and adopting strange behaviours. It is no longer possible to be sure of what I will do or how I will behave, reducing my desire and enthusiasm to go out to socialise or to do simple things.

It feels humiliating and demoralising to show my symptoms, and I am often very fatigued as I spend a large amount of energy hiding them. Sadly, because of this many people do not believe I have dementia.

Community services have been engaged through Domiciliary Care, Alzheimer’s SA and my local council, although this took a lot of effort. Having care providers in my home has been very confronting for someone so young and independent. It felt like an erosion of my humanity, and affected my self-worth.

By telling my story, I hope to make it better for others.

It is imperative we campaign for services for people living with dementia, caring for someone with dementia, or the people working with dementia, including the researchers.

As a younger onset dementia sufferer, the thought of going into an aged care facility is gruesome, the reality that there is no funding for me to do this is appalling and the fact the government does not see as URGENT the need for a significant increase in funding and services for those of us with dementia is inexcusable.

Watch my video story: