Table 2 Managing at home

Caring at home

“We had to get the equipment in so he could get out of the bathtub and get up from the toilet and he could manage in the house. He was, he was very, very incontinent. It was a matter of changing depends a lot every day.” ~ Jane

“But by and large looking back over it, it wasn’t too bad. One of the worst parts of the thing was when she was wandering around the house at night and trying to get outside on occasion. That was a trouble for me… You can be asleep but still aware of everything that’s going on and you kind of develop that sense.” ~ Dale

Found strength

“But you learn an awful lot and you learn what you can do. What you can do I had no idea I would be able to do some things. It’s like having a toddler you think ‘Oh my God I couldn’t change a child’s diaper.’ But it is your child and you do it. And it’s different - it’s your person and you do what has to be done because you don’t want them to be uncomfortable…” ~ Lois

“I really had doubts at first when all this happened that if I would be able to do this sort of thing, right?” ~ Charles

Little bits disappearing

“He just disappeared on me. That was the Paul of then. My Paul had gone years before. And had just kind of… little bits just disappeared over that seven-year period.” ~ Lois

“She put her tablets together in her pillbox, okay? She needed to know which of the drugs were at two o’clock, this one in the morning; this one was at night time. She started to get these mixed up a little bit. And wow, that’s probably when it, we had our biggest problem. She didn’t want to give this up because, “I’m the pharmacist of thirty-three years and I know what I’m doing!” It was her last bit of independence, right?” ~ Charles