Navigating the system

The biggest deal is always you to familiarize yourself with the care available and how to organize it, how to start it, to arrange for home care, to arrange for all these things that is really the basic problem that you are faced with.

It’s a huge amount of stress [being a caregiver]. You have to deal with lots of things that are not there. You have to invent care, you have to organize care, you have to help with some, and you have to deal with a lot of processes and procedures, which don’t fit—they don’t connect. Sometimes [healthcare professionals] talk like a bunch of robots out of a Dollar Store. And [caregivers] have to tie this together somehow, and you have to be able to do that. I can see a lot of people won’t be able to do that. So, it’s going to be disasters. I think there’s going to be a lot of suffering as a result of that. Society is really not ready for this because, in the olden days, you had large families who lived in the same house or close together, or on the same farm.

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