I am a 30 yr old asthmatic, who because of her condition and the limitations it has placed on my life, still lives with her parents. Twice in the last year my parents have had to sit next to me in ITU whilst I fought for breath. This has had a major emotional impact on them and has implications for our day to day lives. Each time my asthma takes a downward turn they are on edge. The refer to it as 'living on a knife edge'.
I am lucky in that I have a good support network of both professionals and fellow sufferers, but they feel that they are very much alone, in that other people can't understand the worry, stress and unpredicatability of living with me. I am at present in hospital for about one week in four.
If anyone knows of any support / literature for parents of adults with long-term illness, or has any help or advice, please contact me. We live in the Poole / Bournmouth area