Our daughter is 41 and lives in a residential home. She comes home every other weekend and for holidays. We take her to all her medical and dental appointments, and when she is hospitalised I go in and remain with her 24/7. Over the years she has developed diabetes, an under-active thyroid and anaemia. We tell ourselves it's just another pill in the already full box!
Although our relationship has changed to an extent as she has got older, our daughter is still very childlike and vulnerable. She has a mental age of two and a half, and is unable to speak. The support we provide is less demanding now, although it is still very emotional and exhausting when she is hospitalised. There are various points of contact that help us with the support we provide, and our elder son acts in loco parentis when we have a holiday.
The support we get from those around us is very good - we wouldn't socialise with anyone that wouldn't accept our daughter.
We have made a will and established a trust for our daughter. Our son is in full agreement with everything we do and plan - if he wasn't we wouldn't proceed. Our family, the care staff at the residential home and family friends are the most important people in our daughter's life. The support we get from those around us is very good - we wouldn't socialise with anyone that wouldn't accept our daughter.
My advice to other families would be - read as much as you can, learn as much as you can, accept what is offered but never be prepared to be fobbed off. Always challenge things if necessary.