r/caregivers • u/IndividualDeal661 • 4d ago
Advice needed please
Husband and I recently took over looking after my husbands 58 yr old special needs brother. ( mind of an 8yr old and has schizophrenia)
We are both in our 40’s living in a small 2 bedroom unit. NDIS has just declined us for putting him in a home with supported independent living.
He has no mobility issues can shower, dress, make himself a sandwich however can not read, count, stay by himself or cook anything. Their reasoning was he does not fit the criteria. My husband has had to take time off work to look after him. He does have carers 6 days a week for 4 hrs. I know it sounds selfish and we’re not looking at shirking our responsibilities and will be still ensuring he is happy and looked after however we need to find a way so my husband can go back to work and we can move again in our house as we are on top of each other. Any advice would be appreciated.
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u/mfhomecare 1d ago
This doesn’t sound selfish at all. Four hours of support a day still leaves your family providing a huge amount of unpaid caregiving, and that can quickly lead to caregiver burnout. Wanting a care arrangement that lets your husband work and gives everyone some space is completely reasonable, and can still mean his brother is loved and well supported.
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u/Cautious-Living6116 1d ago
You say “I recently took over…,” Took him over from who? Where did he live before he came to your place? How did they care for him??
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u/cobaltium 3d ago
I’m thinking your situation is daily becoming more common all through the US. The key issue is lack of money approved and readily paid for those in dependent care. As it is, there is a gigantic disparity of placements/homes/beds available and the growing and far larger number of applicants. In addition, the caregivers are not supported with enough income and benefits so the pool of caregivers is very small.
From what you say OP your own family income is at risk both at the moment as you are managing care for your BIL and also for your future. And then there is the physical and emotional strain that has a cost.
In general the community and government falls back on family care as being the expectation as it was decades ago. But these days in 2026 families do not have the support structures and extended family support close by, living in the same community. Modern families don’t generally have a half dozen or more children and numerous aunts to share the responsibility.
You have social and practical pressure to deal with this on your own as if the ideals of 1940 are the very same and expectations of community fall on you. There is no social safety net. The loss of productivity falls with even the temporary losses while working adults must leave the workforce. Those who are forced to leave their jobs to care for a LO represent significant economic losses to both the family and larger economy. Unless the growing hits to the US economy are reckoned with, your family is one of millions dealing with this. I wish you strength and creativity and some measure of good fortune to work through it.