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Jay Lake
Date: 2013-05-01 05:31
Subject: [cancer] The to do list of the ill and dying
Security: Public
Tags:cancer, child, family, friends, health, personal, radiantlisa
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 nameJay
Transfer/confirm car titles into Mother of the Child's nameJay, 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 requiredJay, Mother of the Child, attorney, Dad
Make written plans for future transition steps, especially with regard to treatment decisions in mid- to late-stage declineJay
See accountant re tax planning for FY 2013 and (if required) FY 2014Jay, Dad, Mother of the Child (?)
Define memorial gifts desiredJay
Letters and videos for [info]the_child, video for memorialJay, Donnie
House inventory - who gets what, consult familyJay, Lisa, others
Basement clean-and-purgeJay, Lisa, others
Investigate COBRA and post-mortem health insurance options for Mother of the Child and [info]the_childDad
Revisit question of my two disability policies, presumably with disability lawyerJay, Dad
Title AuditJay, Dad
Post-mortem humorJay

Terminal Diagnosis
Plan and execute premortem wakeJay, Team E., Lisa
Finalize writing projects, collaborators, et ceteraJay, John P.
Discussions with [info]the_child?Jay, Mother of the Child, Lisa
Arrange cadaver donation to medical schoolJay
Plan memorial ceremony, including musicJay, Mother of the Child, Lisa
Arrange family therapy and grief counselingJay, Mother of the Child
Post mortem financial planningJay, Mother of the Child, Dad
Arrange support group for Jay, possibly for [info]the_child, possibly for caregivers and familyJay, others

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

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 transitionMother of the Child, Dad
Confirm treatment decisionsMother of the Child, Lisa, Dad
Transition to literary trustDad, John P.
Are there powers of attorney to be executed? My attorney is very cagey about thisattorney, Dad
[info]tillyjane to move into my house[info]tillyjane

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

Life insurance payoutsDad, Mother of the Child
Pay off mortgageDad, 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 willDad, Mother of the Child
Finalize Jay's affaris with health insurance and hospitalDad, Mother of the Child
Transition Mother of the Child and [info]the_child to something other than COBRADad, Mother of the Child
Apply to Social Security for survivor benefits for Mother of the Child and [info]the_childDad, 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.

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Mindy Klasky
User: mindyklasky
Date: 2013-05-01 13:29 (UTC)
Subject: (no subject)
I assume you have considered and chosen not to stockpile drugs and/or devices for termination of your life, if you decide to do that on your own, or with the assistance of others? If not, I suspect that the item could be added anywhere between "now" and "cognitive incompetence".
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Jay Lake
User: jaylake
Date: 2013-05-01 14:06 (UTC)
Subject: (no subject)
Well, in Oregon, assisted suicide is a legal medical procedure, so that hadn't really occurred to me to plan otherwise.
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Mindy Klasky
User: mindyklasky
Date: 2013-05-01 14:07 (UTC)
Subject: (no subject)
Duh. I should have remembered that. (And thanks for the listing in general, which is a valuable tool.)
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User: chris_gerrib
Date: 2013-05-01 13:47 (UTC)
Subject: (no subject)
I'm not sure why you're taking a loan on your life insurance. My understanding is that the payout from life insurance is tax-free, whereas a loan would be a taxable event. (Warning - I am *not* a tax expert.)
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Jay Lake
User: jaylake
Date: 2013-05-01 14:05 (UTC)
The payout is tax-free, post mortem. If I want access to the money prior to death, that is a taxable event. A loan from the bank secured by the life insurance payout costs me only bank rate interest.
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andelku: Apu
User: andelku
Date: 2013-05-01 15:33 (UTC)
Subject: (no subject)
ACA implementation is changing a bunch o stuff around COBRA and post-COBRA health insurance. Are you working with an insurance broker? A professional might help with this because its confusing.
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Jay Lake
User: jaylake
Date: 2013-05-01 15:43 (UTC)
That's good advice. Now to find one in Portland...
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User: mmegaera
Date: 2013-05-01 20:50 (UTC)
Subject: (no subject)
You're thinking a lot the way my dad did before he died (although he didn't talk about what he was doing -- it's just really obvious in hindsight that that's what he did, bless him). IOW, you are being spectacularly good to your loved ones. I don't know how to say good for you strongly enough.
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User: suzan_h
Date: 2013-05-01 21:08 (UTC)
Subject: The To-Do List
Thank you, thank you, thank you! As a former probate attorney, I'm glad that you and your family have an action plan now. Dealing with some of this after you're incapcitated will be a nightmare.

As a fan, my heart goes out to you and your loved ones.
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User: a_cubed
Date: 2013-05-02 01:37 (UTC)
Subject: (no subject)
Everyone who has a family (which means, nearly everyone) should have some kind of basic plan in place, not the least of which is an up to date list of assets and locations of assets. When we lost my Dad it was relatively sudden (taken ill on holiday, passing from the illness in hospital without returning home, though we got him back to the UK) even though he was 86. He'd been in relatively good health for 86. $MOTHER, $BROTHER and I had a moderately difficult time tracking down all of his financial affairs, including all the relevant paperwork. We're still not sure if we missed an old life insurance policy, though the odds are it would have been for a relatively trival amount by the time he passed due to inflation.
No one really wants to deal with their own mortality that up close and personal, so kudos to you for dealing with this while you're still capable of doing it.
I should deal with this myself, though my papers are relatively all in one place, but there's no index to them. Moving continents in 2010, though it creates its own issues with assets in the UK and questions about which inheritance law (UK or Japan) applies to my properties in which country, meant that I dealt with getting rid of old and no longer useful paperwork then, and got rid of a lot of the kipple one accumulates over the years as well.
I do hope the health insurance for your family, particularly the_child's, can be sorted out to something as sensible as is available in the US.

Edited at 2013-05-02 01:41 am (UTC)
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User: cathshaffer
Date: 2013-05-02 03:41 (UTC)
Subject: (no subject)
You need to designate medical and legal power of attorney. You need the medical power of attorney NOW. It is easy to do. Fill out the form at your next doctor visit.
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Jay Lake
User: jaylake
Date: 2013-05-02 13:32 (UTC)
Subject: (no subject)
Medical power of attorney has been done for a while. So has durable power of attorney, I just need to revisit that one a bit.
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User: emmainfiniti
Date: 2013-05-06 11:17 (UTC)
Subject: (no subject)
Get the bank to put in writing what documents they will want to allow the person caring for you in incapacity or after your death to access your accounts. In their zeal to not get sued, they often will demand things not legally necessary and will catch people off guard.
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User: shaolingrrl
Date: 2013-06-09 19:59 (UTC)
Subject: (no subject)
Coming to this (as usual) very late. One odd suggestion: don't clean up everything. I found the process of going through Dad's papers quite valuable to me.

On the other hand, I think you're vastly more open and accessible to the_Child than Dad was with us.
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Jay Lake
User: jaylake
Date: 2013-06-09 20:07 (UTC)
Subject: (no subject)
I'm cleaning up, but in a smart way. Plus the vast majority of my papers are going into the archive with Lynne Thomas at NIU, to which the_child will always have unrestricted access.
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