[cancer] The to do list of the ill and dying

Yesterday over lunch, Lisa Costello and I spent some time going over to-dos for me as I grow more ill and transition into the dying process. Then we met Team E. for dinner at the excellent Al-Amir Lebanese restaurant in SW Portland, where we went over this again in greater detail. Even if I get an unexpected reprieve next week, these issues will apply soon enough.

I divided the process into a number of event-based stages. These can’t really be date-based, because we won’t know until we get there when certain things happen. These stages are:

  • Now
  • Terminal Diagnosis
  • Leaving Work for Disability
  • Reaching the Point of Cognitive Incompetence
  • Hospice / Palliative Care
  • Death

These are in rough chronological order, though there may be overlap between various stages. Within each, I’ve listed all the things the four of us could think of that need to be dealt with, and who will do the dealing with. (Slightly redacted for privacy and business confidentiality.) The line items aren’t in any particular order at the moment, though they may acquire ordering in my tracking spreadsheet as this all progresses. Some of the line items are obvious and self-explanatory, others could unpack into entire blog posts of their own. For now, this is what I have.

This is a sobering and depressing process. But being prepared now will make the later stages of my death much, much easier on everyone involved, at least from a logistical perspective. By then we should be focused on emotions and relationships, not how the heck the gas bill is going to be paid.

Transfer utilities into Mother of the Child’s name Jay
Transfer/confirm car titles into Mother of the Child’s name Jay, Mother of the Child
Discuss transition to literary trust with attorney – PO Box, phone, bank account etc. Jay, Dad, attorney, John P.
Put Lisa on writing account, PO Box, other paperwork TBD(?) Jay, Lisa
Confirm with attorney how mortgage and house title are handled post-mortem with Mother of the Child, seek additional paperwork as required Jay, Mother of the Child, attorney, Dad
Make written plans for future transition steps, especially with regard to treatment decisions in mid- to late-stage decline Jay
See accountant re tax planning for FY 2013 and (if required) FY 2014 Jay, Dad, Mother of the Child (?)
Define memorial gifts desired Jay
Letters and videos for [info]the_child, video for memorial Jay, Donnie
House inventory – who gets what, consult family Jay, Lisa, others
Basement clean-and-purge Jay, Lisa, others
Investigate COBRA and post-mortem health insurance options for Mother of the Child and [info]the_child Dad
Revisit question of my two disability policies, presumably with disability lawyer Jay, Dad
Title Audit Jay, Dad
Post-mortem humor Jay

Terminal Diagnosis
Plan and execute premortem wake Jay, Team E., Lisa
Finalize writing projects, collaborators, et cetera Jay, John P.
Discussions with [info]the_child? Jay, Mother of the Child, Lisa
Arrange cadaver donation to medical school Jay
Plan memorial ceremony, including music Jay, Mother of the Child, Lisa
Arrange family therapy and grief counseling Jay, Mother of the Child
Post mortem financial planning Jay, Mother of the Child, Dad
Arrange support group for Jay, possibly for [info]the_child, possibly for caregivers and family Jay, others

Leaving Work for Disability
Pay off all debts except mortgage using insurance loan Jay, Dad
Shop for new, competitive high speed Internet service, place in Mother of the Child’s name Jay, Dad
Transition cellular account (specifically my number) from Day Jobbe to my account Jay, Dad
Determine how cellular account will be handled post-mortem Jay, Dad
Benefits transfer at work Jay, Dad
Arrange for life insurance loan at bank Jay, Mother of the Child, Dad
Arrange minor home repairs using insurance loan Jay, Team E.
Transfer air miles Jay

Reaching the Point of Cognitive Incompetence
Take me off car insurance, make sure billing is in Mother of the Child’s name to ease post-mortem transition Mother of the Child, Dad
Confirm treatment decisions Mother of the Child, Lisa, Dad
Transition to literary trust Dad, John P.
Are there powers of attorney to be executed? My attorney is very cagey about this attorney, Dad
[info]tillyjane to move into my house [info]tillyjane

Hospice / Palliative Care
Execute plan for death at home vs. hospice or hospital facility Jay, primary care physician

Life insurance payouts Dad, Mother of the Child
Pay off mortgage Dad, Mother of the Child
Memorial gifts (from Mother of the Child and the estate rather than directly from me) Dad, Mother of the Child
Execute will Dad, Mother of the Child
Finalize Jay’s affaris with health insurance and hospital Dad, Mother of the Child
Transition Mother of the Child and [info]the_child to something other than COBRA Dad, Mother of the Child
Apply to Social Security for survivor benefits for Mother of the Child and [info]the_child Dad, Mother of the Child
[info]tillyjane to remain at my house for transitional period [info]tillyjane

As always, suggestions and comments are invited. Also as always, permission to republish with attribution is granted.

25 thoughts on “[cancer] The to do list of the ill and dying

  1. Susan says:

    From my experience with the friend that I wrote to you about in email, a suggestion: for any meaningful bequests (memorial gifts), consider doing the gifting in person while still able to do so. It is a valuable chance to share a few meaningful words about it, thanks, farewells, etc. Sometimes it can be hard (for others, if not you) to really say the important things about feelings, and this circumstance can break down that reserve enough that some valuable things may be said. Valuable to the recipient, I mean. Reduces the “oh, I wish I had told him…” moments in the future.

  2. Dragon says:

    Thanks for sharing this.

    Having it laid out like this helps those in direct need of assistance organizing end of life details and also can be used by many others to begin thinking about what needs to be done to prepare families. Talking and thinking about these details in advance sure beats a chaotic scramble and the questions wondering what the individual would want done after the fact.

  3. Trey says:

    This may be covered by the literary trust, but what about online materials after death?

  4. Jay, what about keeping your Live Journal site up and other online identities? Pages like this are of enormous value to others and will continue to be.

  5. Ben Fenwick says:

    1) “No plan survives contact with the enemy,”

    2) “Strategy is a system of expedients.”
    —Helmuth von Moltke the Elder

    But you’re doing a damn fine job of it. –Me

  6. Nina says:

    Hey, Jay, lots of good thought gone into this.

    I watched one of my friends planning for her death, and she did a wonderful job with it, down to the readings at her memorial. One thing she planned I don’t see on your list, but suspect you’ve got covered, was fun stuff she wanted to get in before she died. A visit to distant family, high tea with her female relatives, some time camping or hiking, Thanksgiving with extended family. I know you’ve got travel plans in place. I was just wondering if there were nice things you might like to do with loved ones, like some time at the beach or something like that.


  7. passwords/pin numbers, ownership of social media sites etc. Sure its there, maybe just in a different speak from UK English.

    These are the smartest words you have ever written


  8. At this point you and yours should also think about things to provide comfort for both of you – music, games, time together, comfort for caregiver(s), etc. Money and structure for the time (now and later) is useful and not to be ignored (and boy are you doing well there), but some methods for just easing your (and your loves and friends) time and slacking off on stress should be thought and discussed. Best of wishes and hope.

  9. Laurie Mann says:

    A very good list for anyone at any age.

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