Best Death Possible (part two) – A Daughter’s Mission

The Difference A Doula Makes

An experienced Death Doula is someone familiar with many faces of death. While death is universal in its presence, it is individual in its experience. In my situation, a Doula would’ve been outside the grief circle, someone who could hold space for me as I expended my energy fighting for my mother. He or she would be able to offer perspective and guidance to spark ideas like bringing my mom’s personal items into the hospital, taking pictures, and bringing in music. A Doula would’ve been grounding for me.

It all happened in a week; Tuesday to Tuesday. When my mom was admitted no one suspected she wouldn’t be coming home. It was too fast for any of us to catch up, we only had a week; but that week will be with me the rest of my life.

We think of Death Doulas, or End of Life Doulas or even hospice as being appropriate only when death is imminent. Our most important work, however, happens long before that time. I chose to refer to myself as a Sacred Attendant, simply because that is what it feels like to me – attending the Sacred. Acceptance of death needs to be woven throughout our lives. It is not a final chapter of our story, but more like a character in the background without the knowledge of its time of arrival, nor the circumstances of it. Conversations about death cannot be reserved for some imagined time in the future when death appears imminent. They also need to include more than just the ideal circumstances because that just isn’t probable. Weaving death positive awareness into things like birthday celebrations, traumatic events, or illness could help remedy experiences like ours.

Thing 6 I’d change is doing a death plan. That first night when she said was scared, I would’ve stayed at the hospital. I would’ve pulled out a notebook and written down all the things she would want at her funeral. I would write a letter she’d dictate to whomever she wanted. I would’ve asked what songs she wanted at the service and what readings she wanted. I would’ve updated her living will with Health Care Representative (Proxy) designation. I would’ve asked her important questions regarding what she wanted to leave behind for all of us. I wouldn’t have hesitated to discuss this because we didn’t think it was time.

As a result of my experience with my mother, and with so many others, I created LIFE’S Book, an opportunity to create a death plan and so much more. Completing something like this with my mother would’ve not only established her wishes, but it would’ve been a bonding time for us. It would’ve also provided some guidance for others who didn’t know what to say while visiting. My mother could’ve asked them to simply pick up the binder and pick a page.

The Gift Of Time

Working in hospice I saw the Gift of Time in action. In a death denying society, the Gift of Time is bestowed upon those who chose to acknowledge time for letting go and embrace it. Peace comes with the embracing of death. Understanding that it is no longer a time to fight against the disease or circumstance, but to fight for magic in the last days. It is here that the term ‘good death’ was coined. A death free from suffering and in the comfort of their own home or home-like environment, surrounded by friends and family.

However, there are so many other types of death happening at any given time, don’t they deserve magic too? People die in car accidents, from falls in their homes, from assaults, and from sudden illnesses like stroke or aneurysms. Where are the good deaths for these people? Where is the dying-specific emotional, spiritual, and soul support for these folks? And what of those who lie down to nap one day and never wake up? Where are the goodbyes for their families? Their last words? And what of those who live alone with no one to ‘surround’ their bedside and care for them in their own home? What of them? Where are their good deaths?

They say there are no do-overs in life, and yet I see Life as one big do-over. Every day I get the chance to do things differently than the day before. I learn from my past experiences, I do not view them as insufficient or lacking in any way. The things I wished to do differently led me right where I am today, offering my support to others to reduce these events, by having conversations earlier than ‘imminent’. By doing this differently, I am honoring my mother’s death.

I was just getting my feet wet in the local community network groups talking about dying and death and…

Then CoVid19 Hit

The deathbeds now are even more sterile and are missing most or all family and friends. Fear of death hangs in the air like grey clouds in the Michigan winter sky. Still there is no acknowledging it. No preparations. No magic moments within conversations. Not even while quarantined together have there been conversations about death wishes. There’s just been blaming, conspiracy theorizing and more denial.

What’s emerged is a grief crisis. Compounded complicated grief where before there would be straightforward grief. On top of losing loved ones, we are losing our traditions for grieving. No matter your spirituality, religion or culture every aspect of grieving has been affected. Everything from not being able to be at the bedside to hold a hand, to not being able to have a funeral, with a million things in between.

This results in bereavement counseling being more important than ever. A counselor or a group to hold space to offer comfort and support. There will be more turbulent feelings. More uneasiness. More anger. More regret.

We will shortly be coming upon the first death anniversaries and the grief crisis will hit people unexpectedly. How we honor those anniversaries will be most important and if we do it right, will spark new traditions by creating meaningful ritualistic ceremonies to honor that date. We can only hope that by the time the first of the death anniversaries from this pandemic time roll around that the pandemic has subsided enough to allow more ritualistic ceremonies.

This is something I am preparing. This is something most end of life consultants are preparing.

My Mission

Ask 100 people what their idea of a ‘good death’ is and statistics say that 80 of them will say ‘at home surrounded by family and friends’. Some might even choose a facility with a ‘home-like environment like a hospice house, surrounded by family and friends’. Perhaps because they don’t want their family to have to live in the place where they died, or maybe they do not wish to burden their loved ones with caring for them. Whatever the case most people will not say ‘in a hospital’ and yet that is where 60% of deaths take place.

Why?

Some of it is due to death phobia. The medical community, in particular, has a hard time considering death, as was evident with my mother’s team. They are taught that death is an enemy to fight against at all costs. That cost is too great however, when it robs people of precious time with loved ones.

My mission is to offer the ‘best death possible’ for everyone. None of us can change the circumstances surrounding our death or that of our loved one. However, within the scope of that circumstance we can offer the best death possible.

The best death possible means embracing the circumstances as they are and doing it ‘your way’. It doesn’t mean giving up, so much as it is giving in to the flow of life. I have had the privilege of witnessing many magical life-changing moments that took place at a bedside. I want to bring that to anyone who wants it.

Unlike a hospice referral, to employ a Death Doula there is no need for a terminal diagnosis and 6 months natural life expectancy prognosis. The decision rests solely with the individual or family to initiate at any time. It can be initiated years before the actual death, making preparations, having conversations, and creating legacies. This starts building a relationship with someone who is then familiar to you at the end of life, providing all that much more comfort.

Embracing a best death possible philosophy provides opportunity for patients and families of trauma victims the same Gift of Time as hospice patients and families. It offers the same post-death follow up and support as well. It offers something more than what has been offered to date. A Sacred Attendant or End of Life Doula isn’t meant to replace Chaplains or Social Workers, it is something additional that offers a broader blanket of comfort care to a patient and their families. The service isn’t paid for by insurance or Medicaid/Medicare, so it isn’t restricted by regulations for reimbursement. The Attendant is free to provide whatever non-medical service is right for the individual and the family unit, and to provide it as long as necessary. She or he is not limited to a ‘justified’ one hour visit once a week.

Think what peace of mind this service could be to a son who lives 1,000 miles away from his mother who has dementia and lives in a facility. That he can have someone trusted to be there as many times a week as he wants.

What comfort it could be to a daughter from out-of-town to have in-town support as she lovingly cares for her father in his home.

What clarity it could bring a family whose members all seem to be on different pages.

What a difference it would make in the hospital to have compassionate end of life support available to individuals with sudden illness or decline, or traumatic injury and their family units.

And what of this…what if hospitals offered this service to family units right now, BECAUSE of CoVid protocols and restrictions? Why not give families something to replace a small bit of what has been taken away? It’s the right thing to do.

The services of Death Doulas, End of Life Doulas, Sacred Attendants, etc… will be unique to the individuals that provide them. In overview terms, they provide non-medical support to clients and families. Specifically, they might make a well-timed phone call or text; Be a visitor who is comfortable sitting in silence; Ask just the right question at just the right time; Or offer a listening ear you are not afraid to bend. These are the tangibles every End of Life Doula (EOLD) might offer. The innumerous intangibles are impossible to list here though because they are less about doing and more about being.

Peace Be With You…And May You Be Peace

If you or anyone you know feels they would benefit from this service please speak up to your doctors, your medical team or locate your nearest End of Life Doula through the End of Life Collective https://collective.round.glass/End-of-Life/about or the National End Of Life Doula Alliance https://www.nedalliance.org/ or reach out to me personally at healingritesofpassage@gmail.com or via the contact form on this site.

A Dialogue About Death

Every story ever written has a beginning, middle and an end. Every author considers the end when first sitting down to write a storyline; However in the greatest story an individual will ever author, the end is often left unscripted.

We can’t write death in on our calendars and begin to plan when it seems ‘timely’. On the day we are born our death is written onto our calendar in invisible ink.

Modern day society chooses to approach death as if acknowledging it is morbid, preparing for it hastens it and accepting it is giving up.

Talking about your end of life care preferences when death is a remote possibility, supports decision making about end of life care when death is a probability, and promotes healthy coping during end of life when death becomes an inevitability.

In December 1974, my uncle was home from his work as a missionary priest in the Amazon, when an aortic aneurysm ruptured and he died in his sleep. I was nine years old, in the kitchen, as the discussion of burial arrangements took place and there was question about where he should be laid to rest. I said I knew where he wanted to be buried.

Every year my uncle hosted our family reunion on the grounds of the Villa Redeemer Monastery in Glenview, Illinois. On this property was a small cemetery and on one of our walks through the grounds that summer, my uncle told me he would someday be laid to rest there.

Because he shared that with me, I was able to share that with my mother. It was a small conversation that made a big difference to my mother in her grief.

Perhaps because my grandmother grew up on a farm where death was recognized as a part of life; Perhaps because my mother’s brother died at four years of age; Perhaps because my mother grew up during WWII; Perhaps because my own father died when I was three…perhaps for all these reasons, death was not a taboo subject in my house growing up, nor has it ever been a taboo subject in my own home as an adult.

Embracing mortality has emotionally prepared me to make life and death decisions in unexpected moments. This preparation does not make decision making easier – it does however, make it less complicated.

When we live in denial of mortality we create an illusion that creates complications during times of crisis. It requires that our psyche do some serious catching up in very little time, and oftentimes there isn’t enough time to actually catch up.

The internal dialogues might look like this:

Prepared: (death is a real possibility) “No. No. NO! I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready. I’ll never be ready. I can’t make these decisions. I don’t want to make these decisions. We talked about what to do, but I don’t want to.”

*breath*

This isn’t about me. It’s about Mom and living life on her terms. It’s so hard to imagine this, but Mom has always been clear about what she wants.”

(death is a probability) “I don’t want to believe that I have to do this, but I know what Mom wants. She’s told me all along. She doesn’t want to merely exist. She doesn’t want to be on machines. She doesn’t want to be a burden. She wants to live life on her terms. If she can’t be an independent active participant in life, she said she didn’t want to prolong her death. She prepared me for this, but my heart is breaking.

*breath*

I don’t want her to suffer for me. I want her to be peace-filled.

(death is inevitable) “I’m sorry Mom for the things I did that hurt you. Please forgive me, hurting you was never my intention. Thank you, for teaching me what friendship means. I forgive you, for all the things I was ever angry about. I love you.”

*breath*

Mom, it’s ok to let go, if you need to. I’m here. I’m right here.”

(death comes)

Unprepared: (death is a real possibility) “No. No. No. No. NO! I won’t believe it! We have to keep fighting. You have to keep fighting, Mom. You are a survivor! You got this! Yes, keep her alive at all costs. Don’t give up on her. It isn’t her time yet. I’m not ready yet.”

There has to be something else we can try. Why is she getting worse instead of better? What are you doing?! Why aren’t you helping her?”

(death is a probability) “Mom, I know you are tired and suffering but you have to keep fighting. This isn’t over yet. You still have so much to do. I need you. Your grandchildren need you. I am not prepared to say goodbye so you have to keep fighting, ok?”

You are not a quitter! Don’t you give up on me!”

(death is inevitable) “I can’t believe this is happening. I knew this day would one day come, but today? I’m not ready.

I’ll never be ready.”

(death comes)

I didn’t even have the chance to say good bye…”

Preparation is not morbid. It does not hasten death. It needs to be seen as the natural order of authoring our lives.

Just as preparation does not manifest death, it also does not guarantee the circumstances of our death. We cannot foresee details, but we can verbalize the atmosphere we’d like it to have. Because at birth our death is already added to our ‘to do list’, it is appropriate to have ongoing open conversations about what we might want to include and exclude from that atmosphere.

Amidst the COVID-19 pandemic our mortality has never been more undeniable. Take this opportunity to begin having conversations, exploring your fears, beliefs and hopes about your own death. Tell your loved ones what your preferences are to ease their emotional burden when the time does come. Your loved ones may not have certain choices regarding your end of life care, but at least they will have your Voice as guidance in making the really tough ones.

It may not come during this pandemic – we all hope that is true – but clearly, death is happening all around us now. We might still live in fear of it, but we can no longer deny the possibility, probability and inevitability of our mortality.

It is in embracing the existence of our death that our best living begins.