James Tomlinson in Bedford, England
“It’s just frightening. I get hallucinations where I think there are ghosts living in our garden. But my world seems to take on several dimensions. So I don’t know which house I’m in.”
Tommy Dunne in Liverpool, England
“[Words] might make sense inside your head but they don’t make sense when they come out. The words come out and I think ‘that’s not what I wanted to say’.”
“I’m a different person to the one my wife married…I can’t get through to the part of my brain that wants to ask her how she is, give her a kiss and a cuddle.”
He says that people living with someone who has dementia must “be prepared for when the dementia takes over. There will be days when we are angry, and days when we forget where we are in time. The more that you understand that it’s not the person with dementia that is angry with you, the more you will bear what is to come.”
Agnes Houston from Glasgow, Scotland
“Dementia is more than memory. My brain and body are so tired that I can hardly cook my dinner.” But she can’t sleep in: “Something strange has been happening to me over the last four or five months. I’m waking up so early in the morning.”
“My abilities to be able to cook are steadily diminishing…I am losing my ability to sequence, plan, prepare, and cook. I hate packing – I pick up one thing, put it down, look for another thing, look for the first thing you put down and it’s not there. You end up not knowing where anything is. You try to be logical, but you cannot be logical when you’ve got Alzheimer’s.”
“They talk about the losses you get with dementia, and yes there have been many losses, but not so with my hearing. My hearing has been heightened, almost painfully. I can be out having a meal and the noise gets louder – it’s just like a crescendo, it’s terrible. I can’t stand it and I just want to finish the meal and get away.”
“I seem to live in a state of constant anxiety, of not being able to cope with crossing the road, going shopping, having a shower. The day-to-day things have been more and more stressful and causing me panics. What does it feel like when I know that the slow progression is creeping in and getting more and more frequent? Frightening. Scary. I doubt myself.”
