June 3, 2021, marked the one year anniversary of my Gpa Bill's death. He had Covid-19 as well as kidney and heart failure when he died. Reflecting on this loss, I remember the chaos and heartache of planning his Zoom Memorial. It was a disorienting time - I was afraid other family members who were still sick with Covid could die, I had just left my job of 11 years, I was participating in protests in support of BLM, and Los Angeles was under a citywide curfew. I can see clearly now that my grandpa's humor, devotion to service, and insight on my "special skills" were all helping me process this turning point, directing me towards the work I am doing now. Necessity is the mother of invention, after all :)
My family is plans to honor him and my grandmother, who died January 6, 2021, at an IRL memorial in September. I cannot even begin to imagine the wisdom these beloved ancestors will have shared with me by then! Thank you, time, for helping to heal my heart. Thank you, Gpa, for all the love, gifts, and dorky dad jokes you shared with me. It is my goal to continue to be guided by your love <3
End-of-Life planning can begin at retirement or upon receiving a terminal diagnosis, but what are you waiting for? It is so much less stressful to review options and start getting affairs in order well in advance of a health crisis or arriving at a mature age. Having an Advanced Directive, reviewing accounts and passwords, healing important relationships, or considering legacy projects are all meaningful ways to begin to relieve anxiety and bring peace of mind to even the most “unprecedented” times, right here, right now.
Estate Planning and other End-of-Life organization is meant to be fluid and reflect personal values which can change significantly over the course of a lifetime. It’s a good idea to look to the following Major Life Events, also known as the Five D’s, as reminders to review your plans:
Divorce (or Marriage): Many people commit “til death do us part” but skip the conversation about (spoiler alert) death’s inevitability in their lives. As Stephen Jenkins says in Die Wisely, “Nowhere is it written that by virtue of giving birth to someone or raising someone to adulthood or marrying someone or loving someone or having forty years together with someone that anyone knows, or can know, how to care for that dying someone.” We have to ask questions and have difficult conversations in order to understand someone’s values and wishes in advance. Similarly, we need to review those decisions when vows and relationships change significantly.
Death (or Birth): There’s nothing like a loss to remind you of how complicated death can be in our modern society. If you’ve handled the paperwork of wrapping up affairs, you can attest to the entanglement of subscriptions and accounts of the deceased which can take years to unravel. Similarly, there’s nothing like a beautiful new life to incentivise having an action plan in place! Like an earthquake or first aid kit, even the simplest preparations can have a major impact when a crisis like significant illness or death occurs.
Distance: Advanced Directive paperwork and options for how to handle your remains vary greatly state by state, so major moves require a thorough review of local legislation. If you have pre-paid funeral arrangements, wish to donate your organs, or have appointed an out-of-state Health Care Proxy, it is wise to consider your new location and tweak plans accordingly. Buying a home, downsizing, or otherwise moving house can also impact your Will, Trust, and plans for inheritance.
Decline: A new diagnosis, disability relative to mental or physical health, or other life altering condition can be a striking reminder to review existing End-of-Life plans. There are many tools available to help prepare an Advanced Directive in relation to a specific disease prognosis (there are Covid-19, Mental Health, or Dementia-specific Directives, for example), that can help take the guesswork out of the equation for your Health Care Proxy. It may also be wise to consult an Elder Law specialist regarding Power of Attorney, Guardianship, maintaining Medicaid eligibility status or establishing a Trust sooner rather than later.
Decade: If you’re cruising along in this lifetime and manage to avoid the previous four D’s, you’ll want to look to each new decade as an excuse to review End-of-Life plans. A lot can change in a year, let alone ten, so show some appreciation for your growing wisdom and incorporate life lessons into your plans at least every decade.
I recently completed my own End-of-Life plans and it was strange to imagine my partner, family and friends fulfilling my wishes for a home funeral, performing my interpretive dance eulogy, and divvying up my personal belongings when I’m gone. The strangeness, however, did not overwhelm the desire to leave clear and empathetic instructions for them, making my departure as painless and non traumatic as possible, should it occur one day, one year, or 100 years from now.
I appreciate having spent time reflecting on my values and have grown to love having End-of-Life planning conversations with others. It’s not all doom and gloom, I promise! The best part is, I no longer have to start from scratch, and each milestone I encounter can allow me to make tweaks and share accordingly. Which brings me to the final D…
Discussion: It’s all great and well if you have End-of-Life plans neatly organized, but if you do not share the plans with anyone, they’re relatively pointless! Be sure any wishes about your medical preferences are shared verbally with your Health Care Proxy and let them and those closest to you know where they can find the documentation to support your End-of-Life decisions. Your (end of) Life depends on it!
When my dad was sick with Frontotemporal Degeneration, I would fly back and forth between my family in Cleveland, and my home in Los Angeles as often as I could. Losing someone to bvFTD and ALS is surreal, and as a long-distance caregiver, I really struggled to articulate the guilt and heartache I was experiencing.
One trip, I arrived on the redeye just in time to bail my dad out of jail - he had been arrested and spent the night alone in a cell (*incarcerated populations are expected to include more than 200,000 people with dementia over the next decade, but that’s a whole other blog post). It felt so absurd to watch my heroic dad rapidly changing into someone who could no longer be autonomous in the world. But dad wasn’t upset about it at all. He simply laughed when he emerged from lock-up, so I pulled him in for a big, long hug.
On my flight back to LA, I began to give voice to the experience, shaping my many shades of grief into a narrative I could not only tolerate, but also find beautiful. I wrote the lyrics to what would eventually become “In The Valley,” off Sumeau’s 2020 album This is Not a Dream. Inspired by my involvement in the Association for Frontotemporal Degeneration’s annual fundraising campaign, I ended the chorus’ with the phrase “with love” because acting with love was the only sane way to deal with a loss like FTD.
When faced with anticipatory grief, ambiguous loss, and worry over my own health in relation to this potentially genetic disease, I was fortunate to be able to turn to AFTD, my family, my partner, and our music. As I began to acknowledge these emotions in song, I found a sense of acceptance. It was a turning point for me, and the song became a reminder of how I could continue to approach this overwhelming loss… with love.
A few years later, we performed “In the Valley” at dad’s funeral and then recorded it on March 3rd aka dad’s birthday (his favorite holiday) the year after he died. It was emotional but ultimately one of the best experiences of my life. When our engineer Tyler sent a mix of the song sounding so psychedelic, like something off of The Dark Side of the Moon, I knew dad would’ve loved it. The appreciation for music that we shared over the years had inspired a new creative expression, giving me both a vehicle for healing and a meaningful way to honor our relationship after he was gone.
It is my hope that “In the Valley'' connects with other folks who experience FTD and other dementias. Regardless, writing the song really helped me acknowledge and articulate a difficult experience. My gut and my grief allowed me to tap into inner resources and remember that, like a river, grief flows and changes over time, but the comforting shores of creativity are always nearby.
My dear friend Julie Roxanne recently introduced me to Blursday, the day of the week we have been living in for the past year as we have isolated and worked from home to survive a pandemic. The weekends and weekdays blur together to form a surreal, dreamlike farce of a time period. A month? More like a Meh. She made a beautiful, artistic rendering of a “Covember” calendar attuned to this nonsensical time and allowed me to share it here:
This foggy sense of time looks familiar to me because of my experiences with grief. Driving home from the hospital...hanging up on a “bad news” phone call...resuming trips to the grocery store...gathering strength to socialize again… all of these mundane moments after a significant loss can be witnessed with this same blurry lens.
In the book Time Warped: Unlocking the Mysteries of Time Perception, Claudia Hammond explains our experience of Time as the following: “We are creating our own perception of time, based on the neuronal activity in our brains with input from the physiological symptoms of our bodies.” It is only natural, therefore, that the stress, adrenaline, inflammation, increased blood pressure, literal heartache, and physical pain of grief can significantly impact our experience of Time.
Grief follows no timeline, but if it did, would we who mourn recognize the time passing?