My Story

Early Onset Dementia

Written by aero

My father has been diagnosed with Lewy Body Dementia.
He had lived alone however we visited him regularly. I started to realise something was wrong when he mentioned he couldn't afford to buy the pizza for dinner. I knew this was not true as he was well off. I asked him if he had been eating properly because there was no food in the cupboard. He mentioned that he had been living on the grapefruit on the tree in the backyard! My initial thought was that he was suffering from depression as he was not retirement age and finding it hard to find work. He had also broken up from a twelve year relationship the year earlier.
I took him to the doctors for depression however during their testing it was obvious that he was suffering from memory loss. This was a real surprise.
From here we advised my brother and sister and we got all the legal documents for power of attorney etc done while he was still able to know what we were doing.
We had testing undertaken to determine exactly what was happening and it was diagnosed as dementia with lewy body with a life expectancy of approx 5 years.
At first dad lived with me however it proved too difficult as I work full time and have 3 young children. We had a carer come in while I was at work however it was the lack of sleep during the night and the constant soiling of the floor because he couldnt find the toilet that made me decide to place him in a hostel.
He has been there for 14 months now and he has been happy there. He is however rapidly declining and has forgotton how to eat, shower , use toilet etc. I am now thinking that we need to move him to high care nursing home as he may need to be tube fed in the near future.
I am not sure what to expect in the future and feel that I am becoming scared that the final stages of dementia or taking over. I am not sure how long he has left and dont know how it is going to end.