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Why is it so hard to give away my dad’s brain?

Vox ·
Why is it so hard to give away my dad’s brain?

I haven’t been on a three-way call this emotionally taxing since junior high school.

James is explaining the situation — so many dynamics, so much time urgency — to Rachel, and asking if she thinks it would be workable, while I just nervously try to follow the conversation, crossing my fingers and toes.

There’s inevitably going to be heartbreak, but is it possible there could also be a silver lining? So what is this all about? Well, I’m trying to figure out how to donate my 78-year-old dad’s brain.

He has advanced dementia and is living in a memory care community.

James Watkins is the research and study coordinator of the UCLA brain donation program .

Rachel is someone who works at a crematorium, which, as it turns out, cannot make it work.

Certainly, the demand is there for my dad’s brain.

The World Health Organization describes dementia as “one of the greatest health challenges of our generation” and reports that 78 million people will have dementia by the close of this decade (a 188 percent increase since 2000), for an annual global cost of over $2.8 trillion.

And yet, research into what causes it and how to cure it remains stymied by a lack of funding, high-quality data, and — this is where me and my family come in — poor coordination with people suffering from dementia and their caregivers.

My dad hasn’t been a part of any research studies, which I have come to understand is how most people who donate their brains get introduced to the process.

Instead, I’m free soloing and it’s not going well.

I do some research, make some calls, then lose track of it for months on end.

I’ve got two kids — 10 and 12 years old — and there are constantly changing camp pick-up and drop-off times to coordinate with my husband, my mom’s post-op knee replacement appointments to make, and lest you think I’m Mother Teresa, a lot of television to binge and dive-bar beer to drink.

Meanwhile my dad is getting worse and worse.

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