Checklist for When Your Loved One Dies

In May 2022, Lisa Stambaugh, daughter of a local support group member with Parkinson’s Disease, created a website,

In 2015, when Lisa’s father Ira died, Lisa searched online for a list of all the tasks that needed doing when someone dies. She did not find a comprehensive list. So, at that time, she created a to-do list in Google Docs to share with her sister and keep them both organized. Lisa converted the Google Docs list to a PDF, and has been sharing it with interested parties that way.

Now, she has created a website, where both the Google Docs and PDF are posted. See:

The Checklist
May 2022
Lisa Stambaugh (

Like all good lists in this category, it has sections based on timeframe — things to do immediately, things to do soon, things to do later.

For those in the SF Bay Area, the advantage of this checklist is that it includes some helpful Bay Area-specific info, such as phone numbers for PG&E, etc.

The Brain Support Network blog has a few other checklists to consider:

Three good lists from 2010 and 2012 (especially a list of 100 things)

Help for Seniors list from 2020 that is specific to spouses and includes a list of needed documents and information

AARP list from 2020


“Brain Donation” – poem by Diane (with PSP)

We recently welcomed Diane Deaver to our local Northern California support group, which has virtual meetings for those with progressive supranuclear palsy (PSP).  Her husband Doug has joined our meetings for local PSP caregivers.

Here’s a poem about brain donation that Diane recently shared.  If you’d like Brain Support Network’s assistance in arranging for your brain donation (or a family member’s brain donation), let us know!

Brain Donation

When I don’t need my brain anymore

(Which means that I’ll be dead)

Rather than have it cremated with me,

I’ll donate it to science instead.

If I can help some others

Diagnosed with PSP

to have a better future

that would mean the world to me.

If knowing what was in my brain

would help to find a cure

it would be a mighty contribution

That’s for sure.


©Diane Deaver
PSP Poet
June 2021

Genetic Testing Resources

Brain donation is the ideal way to obtain a confirmed diagnosis while also enabling research into neurological conditions.  Many families who contact us about brain donation want genetic testing.  You have likely been directed to this page as the most efficient way to provide you the information about genetic testing.

The brain bank we work with, Mayo Clinic, does do genetic testing on donated brain tissue but does NOT share these results with families.  It is not allowed to share the results with families because the brain bank is not a CLIA-certified lab.  CLIA-certified labs are required to provide genetic counseling.  We don’t believe that any brain bank is CLIA-certified.

If there is a strong family history of dementia, Mayo definitely does genetic testing prior to the preparation of a neuropathology report for the family.  In these reports, Mayo often says things like “we generally see this particular pathology in those with a certain genetic mutation,” or “given the family history of dementia, we recommend your family consider genetic testing.”  Of course these are strong clues that something is being inherited in the family.

So what can a family do to accomplish genetic testing?  The best is to arrange for genetic testing while the person is still alive.  You might try one of the options below.

If your family member has passed away and his/her brain has been donated, if your family can find a reputable testing lab that can accept frozen brain tissue in slides, then the legal next-of-kin can direct the brain bank (including the Mayo Clinic) to send tissue to the lab for genetic testing.  Your family pays for the testing (but not the shipping).  You can ask any of these options below if they accept frozen brain tissue and can do genetic testing from that.

Let us know if you have additional questions but note that we are not genetics experts or genetic counselors!

Athena Diagnostics

Marlborough, MA
Phone: 800-394-4493, Option 2
Email: [email protected]


San Francisco, CA

Phone: 800-436-3037
Email: [email protected]
Office Hours: M-F 5am to 5pm PT

Offers pre-mortem testing and genetic counseling for $250.  This lab is CLIA-certified.


Prevention Genetics

Marshfield, WI

Phone: 715-387-0484
Email: [email protected]
Office Hours:  7:30 am – 5:30 pm CST

Offers pre-mortem testing of 18 genes associated with dementia (“dementia panel”). Or testing specific to the suspected genetic disorder (“custom panels”).

Offers post-mortem testing

Offers pre-mortem banking for the case when testing is not desired at the present time