Heartless? No. But:
My cousin is very LFA.
If you want him to scream for 12-20 hours straight (until his voice gives out, and then still screams silently), take a flash photo of him, or flick your headlights at him, or have any kind of strobe light.
Screaming like your ripping off his arms.
The only photos we have are direct sunlight that have been gotten almost on accident, with a phone (the sound of a camera triggers a lesser response, although other clicking doesn't bother him.)
SIMILARLY:
Some families keep a kid in institutional care in their daily lives. Others? Trying to do so creates anxiety attacks, uncontrollsd sobbing, angry outbursts. Ditto NOT doing so can also bring on those responses. It's grieving, relief, guilt... And every family handles it differently.
Just so you know... Most marriages don't survive LFA. It's too intense, either in care or out.
So while I don't think your a beach at ALL, know this family is under ENOURMOUS pressure, LFA son may have triggers you don't know about (or they planned on having him in the photo, and he had a hard day, or a meltdown, or whatever that made it impossible and they've learned not to cancel everything, but just keep moving forward the best they can), or this is how they're trying to cope with the idea of having him be gone / part of their grieving process. (See? The 4 of us? We're going to be okay together.)
Basically: trust that they're doing what they have learned is best, and are trying to do the best thing they can for their family.