[Kursk]

Originally Posted by Osem

Some cases will clearly be simpler than others. However, often you don't have the information at your fingertips - remember you may be being asked about events which happened many years ago relating to a child or other loved one. There's also the very real problem of accepting just how bad things are when you're trying to describe in detail all the ways in which, possibly, a variety of conditions affect your loved one and trying to identify and articulate clearly the many possible ways in which their disability affects their life and indeed your own (if you're still caring for that person, as we have been for over 20 years now). Often it's other people who can better see the extent to which your life has been affected because you gradually adapt your lives to the needs of the person you care for and lose sight of all the things you do on a daily basis to support the person concerned as well as all the things you can't/don't do anymore as a result.

Caring for someone with complex needs long term involves a roller coaster ride of emotions, fears, frustrations, doubts etc. which are really very difficult to confront at times. I know we worry terribly about Osem Jnr # 2's future and who's going to care for him when we can't. There are times when we feel we can't take any more and will have to put him into care and the truth is that, if we give into those feelings, that's where he will end up sooner rather than later at massive cost to the public purse. To an extent you often survive living in denial about the reality of your loved ones prospects and your daily life and I can tell you that filling out forms such as this, which bring into such stark focus the scale of those problems, is far from easy. In fact it's a most depressing and disheartening exercise which calls everything into question and creates a whole lot of additional stress and anxiety amongst all those involved. In our case, due to the extent of his problems, there's also always that terrible doubt and pressure about whether you're doing the best, whether you've explained properly, whether you've said enough, whether you've overlooked something important. Believe me, although it is a necessary process it can be a very onerous one which involves a lot of very difficult soul searching indeed...

Understood. Thank you.