The hard, hard work of supporting a death

Much has been said about dying and about how hard a death can be on loved ones. But I’ve never seen anything like this email, which I received this morning. It’s from Myra Isaacs and Jan Oldenburg, who became the primary caregivers and care organizers for “Mighty Casey” Quinlan, who died April 25 after a month in a skilled nursing facility under the supervision of hospice.

In the past I’ve seen bits and pieces of the many tasks listed here but holy cow, when it’s all put together, it’s sobering. It’s a lot of work, at an unhappy and often stressful time.

I myself was not with them at Casey’s side in Richmond – I’m just the messenger who was blown away by this email and asked to publish it.

[Notes: “Mary” was Casey’s given first name at birth. She never liked the name, so adopted her original last name as her first. CeCe (Cecelia) is her sister.]

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From Myra Isaacs:
Jan and I want to say “hats off” to members of Team Casey for lovingly and admirably serving Mary/Casey in her final days. A miraculous amount was accomplished in a short amount of time – about 7 weeks! On multiple platforms, tributes have been coming in for Casey from around the country and from overseas.

We are all acutely aware of the loss of Casey and what it means to each of us. Wrapping our heads around this loss will be an ongoing process. For sure, the world is a duller place without her.

Here is a report of the timeline and what has been accomplished and still remains to be done:

1. Casey called Myra at around 5:30 AM on Tuesday, March 7th to report that she had fallen and that, even with CeCe’s help, she couldn’t get up. She asked Myra to come over and help. (Myra had a key to the apartment.)
2. While Myra was on the way to Casey’s apartment, Casey called the rescue squad (a better, safer idea) and they were able to get her up and back into her recliner chair.
3. Casey again fell on Friday March 10th. This time she had the rescue squad take her to Bon Secours St. Mary’s Hospital.
4. After Casey was stabilized and her pain managed, it became clear that her legal and personal affairs were not in order. Casey asked both Myra and Jan to step in and undertake specific roles. 
5. After research, Jan located and consulted with a Wills and Estate Attorney and later a Probate Attorney. In collaboration with Casey, we completed the wills questionnaire at her bedside – with Myra, Casey, Hank Burchard, and Jan in attendance.
6. The attorney came to Casey’s bedside to execute a Power of Attorney (POA) and Will on Friday March 17^th. Casey named Jan her POA and Executor. Later, we executed two codicils to the will to correct an error and change the original backup executor. The attorney came to Rosedale Health and Rehab to get the codicils signed.
7. The same attorney was later asked to draw up legal paperwork for CeCe, Casey’s sister, to make sure her affairs were also in order.
8. St. Mary’s Hospital notified Jan and Myra on Tuesday March 14th that once we decided where Casey was going, they were ready to discharge her, declaring her condition “stable.” Casey stated that her preference was to return home with hospice care. We tried to envision fitting a hospital bed in her living room, but the prospects weren’t good, especially when we considered the need for round-the-clock care.
9. Jan and Myra inquired about care options considering home care services as well as skilled nursing facilities (SNFs) that might work for Casey. We made inquiries about each care option and the attendant out-of-pocket costs as well as hospice care options. The focus was always on keeping Casey safe and comfortable:
   • Initially, we thought there would be in-patient hospice options for Casey, but began to understand that today, in-patient hospice is primarily short term. We needed to either find a Skilled Nursing Facility or home care options; in either case, hospice care would provide oversight.
   • We interviewed multiple hospice providers as well as multiple Skilled Nursing Facilities.
   • Based on multiple criteria, including finances available, bed space, and the option of admittance to care under “Medicaid Pending” status, we decided that the best option was to have Casey go to a skilled nursing facility, Rosedale Health and Rehab, where Casey would receive care around the clock. Trinity Hospice would oversee Casey’s care in Rosedale. On a fee-for-service basis, Rosedale would have cost $11,000 per month; admission under “Medicaid Pending” status meant that her care costs would be covered after the Medicaid determination came through.
   • Medicare only covers a limited number of hospice care hours weekly either at home or in a facility. This meant that if Casey went home, we would need to hire and pay for round the clock caregivers, which was not financially feasible.
   • Jan completed paperwork to apply for Casey’s Medicaid benefits in conjunction with Bon Secours and the Henrico Medicaid Determination unit.
   • Rosedale agreed to accept Casey with no out-of-pocket payment in a Medicaid pending status (the process takes 45 days and can be paid out to the facility posthumously). Note that we’re still waiting for the determination.
10. Dave deBronkart set up A CaringBridge site to so Jan and the team could share daily updates about Casey and her condition as well as tributes, photographs, stories, etc.
11. Andrea Downing re-opened Casey’s GoFundMe. However, the attorney advised us that the money could jeopardize Casey’s Medicaid application, possibly rendering her ineligible, so we shut down the account. 
12. We spent many hours identifying the important people in Casey’s life and identifying who was local. Myra then set up a communication network so “Team Casey” could communicate easily and share updates and responsibilities. Dealing with family and friend dynamics, especially under fraught circumstances, was occasionally difficult.
13. Casey received two notable acknowledgements of her lifetime of achievement. 
    • Casey was awarded the Doc Tom Award from the Society for Participatory Medicine. Jan worked with these The Society for Participatory Medicine to “fast-track” this award so it could be presented to Casey while she was still with us! We then blew it up to poster size, read it to Casey, and posted it on her wall in Rosedale. It generated comments, questions, and googling from hospice and Rosedale staff and helped humanize Casey for them.
    • Casey also received a Tribute from the RVA Tech Council – Margaret Lynn McDermid MLM Awards. Casey’s friend Lisette Johnson spearheaded the tribute from the RVA Tech council and played a recording of it when she visited Casey.
    • Today (5/4/23) the BMJ (nee British Medical Journal) approached Dave deBronkart about writing an obituary for them about Casey’s role in the patient movement.
14. Myra interviewed multiple companies regarding auctioning Casey’s belongings to cover her outstanding debts (and possibly contribute to her estate with the aim of funding CeCe’s needs over the long term).
15. Jan spent innumerable hours on the phone using the POA to gain access to Casey’s accounts and debts. In addition to listening to terrible “Muzak” Jan found out how many organizations do not understand the role/legal aspects of a POA and how many did not/would not reveal information to Jan or said it would take multiple weeks to process the POA paperwork on their end. Many asked to speak with Casey directly, demonstrating that they don’t understand the legal powers of the POA nor do they understand what it means when an individual is under hospice care. If you have the option, it is clearly better to get a POA on file before you need it!
16. Of particular concern was gaining information about Casey’s USAA Life Insurance policy in order to update the beneficiaries. (Jan spent 4+ hours, multiple times, on hold with them!) More hours were spent determining whether these USAA Life Insurance funds would have to be: 1) used to pay off Casey’s debts, or 2) would be taken by Medicaid to cover Casey’s health care costs. Fortunately, because the policy was term life and because Casey named beneficiaries, the life insurance policy is not considered a part of her estate and will not be seized by Medicaid.
17. At Casey’s request, we worked with the Cremation Society to set up and pay for a cremation policy for Casey and make it irrevocable (so that Medicaid would credit the expense). Only after Casey died did we realize that Casey’s Medical Power of Attorney specifically needed to address cremation and burial in order to expedite the last part of the process (true anytime the next of kin is not the person managing the affairs). This added additional time and stress.
18. Attempts were made to return a couch purchased by Casey on CeCe’s behalf for which CeCe was reimbursing Casey. Despite being informed of the extenuating circumstances, and though the couch had never been used and was sitting in CeCe’s Fredericksburg apartment with the tags still on it, the furniture company (Ashley Furniture and its financing bank – TDBank) refused to take it back or discuss the circumstances with Jan (by phone) or with Piper and CeCe (in person). This adds to Casey’s unresolved debt load. TDBank is likely to fall to the bottom of the list of outstanding creditors.
19. Casey was so thorough in setting up multi-level privacy settings on her electronic devices that gaining access to her accounts has been challenging, but has mostly been accomplished, thanks to critical passwords that Casey provided early in her stay at Rosedale. Note that most of Casey’s bills came electronically, which made clarifying her various obligations more difficult without full access to her emails; at least with paper there is something concrete to use in assessing obligations!
20. With Casey’s agreement, over the course of 5-6 weeks, Casey’s belongings were organized and prepared for auction. Specified beneficiaries of particular items have either already received their inheritance or will shortly. This includes the transfer of Casey’s firearms, which we learned must be done at a certified dealer who can also do a background check on the giftee.
21. Books contained in 8 bookcases were been distributed. Other items have been brought to consignment shops to be sold; some items have been donated to a new immigrant family with 7 children and some items donated to Goodwill. As payments are received from consignment shops, they will be given to Jan to be deposited into the estate.
22. The auction company identified items they deem strong candidates for auction and brought these items to their warehouse to be cataloged, photographed and made ready to sell online.
23. Casey’s apartment has been emptied as of Friday April 27th. (Myra organized this effort with special thanks to Cece, Piper, Mickie and Bart.) 
24. Casey’s landlord was notified on April 14 that Casey’s lease would be terminated as of April 30. Casey’s parking pass and keys have been returned to the property manager, meeting the April 30th deadline. The post office has been notified to forward Casey’s mail to Jan in her role as Casey’s executor.
25. As specified in her will, Casey’s car has been donated to NPR. Her E-Z pass has been/will be disabled.
26. The online auction hosted by the auction company Caring Transitions will take place from Monday, May 9th @ 4 PM to Tuesday May 16th at 7 PM. Friends and family will be notified and given a link to the auction site @ 4 PM Monday May 9th.
27. Writing of the obituary is in process as of April 30th. After feedback and edits from friends and family, Casey’s obituary will be placed in the newspaper soon.
28. The Cremation Society will send Jan copies of Casey’s death certificate, when available, which will allow Jan to file the will for probate.
29. Casey’s SS number, voter registration, credit cards, passport etc will all be disabled.
30. As executor, Jan continues to work on tabulating Casey’s outstanding debts and understanding her finances and obligations. The probate process will determine which debtors will be paid and in which order.
31. Jan will be filing taxes for Casey for 2022 and 2023.
32. Casey specified where she wants her ashes spread (at sea in two different locations) and arrangements are pending to make that happen. Casey allocated funds for this purpose as part of her USAA life insurance policy.
33. Casey asked Jan to finish the book that Casey had started writing – which will be accomplished down the road.
34. A Celebration of Life will be organized over the next few months. Family will be asked about dates they are available.

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Additional commentary from Jan and Myra:

Importantly NOT included in the above list is the work her local friends did to manage Casey’s care while at Rosedale. There was much to monitor and manage, not least the constant delicate management of medications, balancing between Casey’s comfort and her desire to be functional as visitors came and went. Early in her stay at Rosedale, Casey seemed rather zombie-like. Initially we weren’t sure if this was due to a rapid deterioration in her medical condition or over-zealous pain management. We worked with her hospice care provider to moderate the pain management meds and within a day, Casey was much more herself.

We also had a rocky transition from Bon Secours Hospital to Rosedale. It took place on a Friday and there were significant delays in getting Casey’s pain meds. It is still not entirely clear whether the fault lies in the hands of the hospital due to insufficient discharge instructions, the SNF, or the hospice service. What is clear is that transitions of care SHOULD be smoother for the patient with an emphasis on continuous pain management!

A big take-away for all of us is that when you have a loved one being cared for in a skilled nursing facility, even with hospice support, it really matters that you have “eyes-on” them and the care being provided to make sure the care is competent, loving, and appropriate.

Dave again:

If you’ve been through this, do you have additional sorts of work (real work) that go into this process? If so, please share in a comment.

I think we all need to know what lies ahead, someday, so we can think ahead and prepare what can be prepared.