Hi, my name is Pippy2000!

Pippy2000

I live with my husband and his profoundly disabled son. He's 18, large, peg fed, unable to walk, wears a nappy and cannot speak/understand language. My husband's mum lives in Ireland. He hasn't seen her for ages and has wondered if I could look after him on my own for a long weekend in the summer. Am I being heartless by not saying yes?

Alex_Alumni

Hello there @Pippy2000 and thanks for reaching out. Does your husband get any care support from the local authority, if I may ask?

Scope has some information on respite care, though as your husband's son is 18 years old, that may limit what help you are entitled to. Either way, it's certainly worth enquiring with your local authority about additional care and support.

I'd encourage you to be open and communicative with your husband, discuss what options might be available in terms of arranging respite care for his son. 

Perhaps there might be charities local to you that can also offer support?

You and your husband are also welcome to contact Scope's Family Support Services, such as Navigate and Parents Connect, who may be able to offer more specialist support.

Let us know if we can help any further in the meantime.

Pippy2000

We get respite from continuing healthcare. Now his son is 18 he can get 2 nights in a row. Is that long enough for my husband to go to Ireland for? The fact that I can't drive doesn't help because it means I can't drive it pick up my step-son from it )-:

Alex_Alumni

Hello @Pippy2000 and thanks for explaining for us, that's very helpful

Is that long enough for my husband to go to Ireland for? 

I'm not sure we can answer this question for you, perhaps you can talk with your husband about what would work best?

I wonder if there would be any grants for travel available, like taxi fares for example? Is this something you've discussed with the continuing healthcare provider?