The good life: Annie - some days, no time to think
“All I want is a good night’s sleep and a bit of a break.
I guess, what I am really saying is that I am looking forward to a time when I can do a few things for myself… it has been full on caring for Annie.
Some days I don’t have time to think… I just go all day… it’s non-stop.
There are days when I feel I can’t go on. Sometimes I have a good cry and then I am okay to keep going with Annie. She is a good person and has a kind heart. She wants to help all the time and when I am not coping she seems to know… she comes and puts her hand on my shoulder and gives me a comforting look.
Some nights I can’t wait to go to bed… I’m so tired I fall asleep as soon as my head hits the pillow… there I can turn off and have some peace.
Other parents tell me I’m crazy.
I never go out… just doing the shopping is my ‘big time’ out!
I never have people over for dinner or just get together… we hardly ever see the rest of the family and it is really difficult going to social events with Annie. Just getting through the day is tiring enough… besides I would not have the energy to do anything else.
I tell you it can be hard!
Nobody knows what I go through. I have tried to get some help but it’s never available when I need it… the people are very understanding and do their best but they can’t always help when I need it… they are stretched to the limit... there is only so much they can do.
I would give anything just to have a regular break where I can do some of the things I want to do… have a sleep in the middle of the day… go for a walk… anything.
I sound like a real ‘whinger’.
What else can I do?”
Lessons learned
Parents providing full time care, running a family home and working, have little or no time to be involved with 'the good life'.
The quality of parents and siblings’ lives largely depends on the availability of effective care support at a time when it is needed.
Respite and short-term care provides parents with a break from ongoing care. However, the need for respite care and long-term care accommodation is increasing and becoming increasingly difficult to arrange.