Friends, Family & Carers Forum

[Splash]

I got an email which asked 'what do carers need?'. Not sure where to put the answer so here goes.

I care for my son who had psychosis as a teen and has just had another episode at 26. Sometimes they call it schizophrenia and sometimes they say it is too early to make that diagnosis. He has a person who is supposed to talk to on the mental health team but he does not relate to her well.

Carers need proper support for their carees that the caree can relate to. Carers also need easier methods of seeking help that do not require filling in copious forms many times over with the same information. Also when a person goes to hospital the story should only have to be told once or every time you go to hospital.

[NikNik]

Hi @Splash,

If I have understood your response correctly, it looks like all of your recommendations are for matters related to the person that you care for.

What about you? What do you as a parent and carer need for support, help and advice?

[Splash]

It is about me. If my caree does not get the respite support required I spend the whole of my respite time worrying instead of enjoying my respite. If I have difficulty getting help my primary focus is on how to get the help I need rather than on me. If I have to repeat the story in hospital I get frustrated have a bad visit with my caree and return home frustrated and depressed. Unless these needs are addressed there is no room for me. I do not need support to be me. I can find support in the community to help me with my hobbies. I need support with my caring activities so that I have time and emotional energy to be me.

[NikNik]

Great points @Splash

Without naming any organisations, did you have a bad experience getting respite care previously?

[Splash]

Had bad experiences and know of others who had bad experiences. Also had some really good experiences. Trouble is there was no way to make sure it was going to be good.