Caring for my 32 year old son at home full time

Hi my name is Hilary and care for our son at home who has learning disabilities, he has a varient of Klinefelters syndrome called 48XXYY which was fortunately diagnosed at his birth.

Our situation has become more challenging as he has got older as he also has alcohol related epilepsy and has seizures due to this, which can be a huge concern for us.

I work part time as claim carers allowance which helps me a lot, although I never feel I have a lot of energy! I am 58 years old and live with my husband. We have an older son and two delightful grandchildren ages 2 and 1, who we look after one day a week also!

We don’t have any respite at all and can’t depend on extended family as they all find our son challenging too.

We are soon going on a family holiday which will be lovely with our grandchildren and our sons but I doubt it will be very relaxing!

Hi Hilary,
welcome to the forum.

I don’t know many carers who have a lot of energy!

Does your son do any activities during the day?

I hope you have a lovely holiday, it might have to be a case of. “A change is as good as rest,” which we know as carers, is debatable!