Alzheimer’s Notes and Safety

A friend who’s managing her spouse’s onset of Alzheimer shared the term “anticipatory grief” with me — that was a new term I hadn’t heard about.

Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday. Anticipatory grief is also more broadly imagined futures. There is a storm coming. There’s something bad out there. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. I don’t think we’ve collectively lost our sense of general safety like this. Individually or as smaller groups, people have felt this. But all together, this is new. We are grieving on a micro and a macro level.

David Kessler

I then asked her the question, “Do people want to know what disease they might be carrying?” To which she said, “People want to know in different amounts.” I thought this was the most wise thing I’ve heard in a long time.

People want to know [the bad thing] in different amounts.

My Friend

Someone who loves to go deep, wants to know everything. Whereas someone who can’t handle or manage the situation might want to know zero/zilch.

We then talked about how managing the situation of a loved one taking on Alzheimer’s requires her to “bear it” — which takes on both an intellectual and physical toll. Her partner will eventually fade away, but my friend will need to navigate the different form of grief as her memory fades.

My friend then went on to describe how a clinical trial works for an experimental drug, and how it falls into three phases:

  1. Safety [it shouldn’t hurt anybody]
  2. Safety and Efficacy [it didn’t hurt someone and did it do something in a sample group?]
  3. Does it work? To what degree does it work? [does it reduce the symptoms or does it actually address root cause — to what degree is it going to work or stop working]

If a drug passes these three phases it then gets to be FDA-approved. Wow — I learned so much amidst hearing something so sad. Life is meant to be lived while you’ve got it. Live! —JM

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