1990 was the year of magical changes in my life. As is usually the case though, I couldn’t know it at the time.
I had been married a little over one year and my beloved grandmother had just died. I was 25 years old and working in a job that had nothing to do with my Life’s Purpose and the death of my Gramma left me depleted, devastated and depressed.
Just ripe for the Universe’s picking, I suppose.
I don’t even remember how I stumbled upon the new job as a Social Worker in a Valparaiso, IN extended care facility. I was to be responsible for the programming on the dementia unit, as well as the psychosocial care of the patients on the new dedicated hospice unit. My supervisor was ‘other worldly’ and introduced me to alternative non-medical modalities as a way to assist our hospice patients with pain control.
It was there that my end of life doula education/experience began, though -as I said- I didn’t know it at the time.
My work experiences served as fuel for some deep meaningful conversations between my husband and I about death and dying. As my career developed so too did our conversations around end of life issues. The topic of death was commonplace in our home and we clearly stated and restated the things we would want and not want regarding treatments and interventions.
As our daughter grew we included her in those discussions, too. She was four when I began to take her with me to visit hospice patients. She had a certain magic with patients who had long retreated behind dementia made walls. She was compelled to hold the hands of those who mere hours later would cross the Threshold.
We all lived our lives with the understanding that death was a bookend to birth, which gave us the wisdom to concentrate on the experiences between them.
The marriage ended in 2012 and like any family we struggled a bit to find a new normal. It was not easy, by any means, but we eventually found a place of harmony.
I would go on to remarry and my new husband and I moved to another state with my daughter, then 20 years old. My ex-husband and I maintained communication regards my daughter and often exchanged updates about our own lives.
On December 20, 2015 while back in town for a friend’s funeral, my daughter and I stopped in to see my ex-husband. It was then that he revealed that he had stage 4 lung cancer.
In the months that followed, a nightmare unfolded slowly all at once. The information he was giving my daughter contradicted the medical treatments he was consenting to. The woman he had been living with, now his fiancée, who at first seemed supportive, kind and compassionate became someone else entirely.
In late April my daughter was called to his bedside because of a decline. My ex-husband’s niece states he was calling for his ‘wife’, meaning me. My daughter called in tears and asked me to come. I did what any mother would do and hopped on the very next train.
Upon my arrival, my ex-husband perked up and began to proclaim his appreciation for me and stated that he did not know what he had when he had me. Over the next few days we would have meaningful conversations and in a private moment he gave me an apology I had long before given up on ever receiving.
That said, it was clear that his state of mind was altered at times. He had been having seizures which turned out to be the result of a rare secondary cancer of the spinal fluid that spread to the brain. While he was alert he was not always lucid nor coherent. This seemed to be ebb and flow with the timing of a medicine that was used to keep the swelling in his brain down.
As I stood in his hospital room it was very hard for me to remember that I was neither his wife, nor his end of life doula. I was simply there as the mother of our daughter and the step-mother to his first daughter. I had no legal rights. I had no rights at all. My place was simply as a guide for his two daughters, as they had all the legal decision making rights.
So I became their end of life doula, creating a space for them to be active in their father’s journey and to feel some sort of empowerment in a situation where they were feeling powerless.
Because the eldest daughter was local she was the one designated by the hospital to sign all consents for him.
As we all listened to the doctors we were clear on the fact that he was dying, so it was quite the shock when this fiancée of his, who had seemed compassionate and kind, suddenly turned into a different beast, and did not want to forego aggressive treatment. She was irrational and verbally aggressive. She began to stay away from the hospital for long periods of time.
In private moments my ex-husband would talk of acceptance and a lack of desire to pursue active treatment, but his thoughts and intentions were overpowered by his fiancée.
His only advance directive was the one we created when we had been married and now his competency was in question so having him sign a current health care representative form was not an option.
His two daughters agreed that seeking further aggressive treatment was not what he would want. Was indeed not what he was expressing he wanted.
My daughter and I needed to return to our home and we left with the promise to support his eldest daughter in decision making.
On April 27, 2016 we were about 2 1/2 hours away on the road when she called us to say that the fiancée gave her a consent form to sign so that she and their father could get married.
My daughter strongly objected and we all found it suspicious that this was not mentioned at all during our visit, but suddenly presented mere hours after we left. This woman’s motives were now suspect.
On April 29, 2016 she had him sign a printed-off-the-internet durable power of attorney, witnessed by a friend of hers. Then she forged his signature on a will, witnessed by a friend and her sister.
It was later discovered that on April 26, 2016 she named herself as beneficiary of his retirement accounts with another forgery.
On May 2, 2016 this woman managed to convince the eldest daughter that this is what her father wanted and she signed the consent for them to marry. A sitting Indiana juvenile judge performed the hospital beside ceremony.
On May 15, 2016 the now wife attended her ‘wedding reception’ without her husband because he was too weak and ill to even get dressed. He sat at home with our daughter at his side and later his other daughter joined them.
On May 21, 2016 she completed a quit claim deed, as his DPOA, transferring his house to herself.
He died on May 25, 2016.
My daughter and I had arrived on May 22, 2016. I was there strictly as support to my daughter. When we arrived for a moment he became alert, recognizing our daughter right away. The wife made sarcastic passive-aggressive remarks about how he had been non-responsive to her but perked up for our daughter. Then he saw me and gave me the same kind of greeting. This clearly angered the wife.
My daughter spent most of the next two days with him. Because of legal matters that were transpiring, the wife became hostile and my daughter and I both felt it best I not return to the home.
While she was there the wife would leave the home to run errands. My daughter would call me and we would Facetime as she laid with her father, being present for him, reminiscing, playing music, comforting him and giving him permission to go. In effect, our 22 year old daughter was doula-ing for him. And I was doula-ing for her.
In the afternoon of May 25, 2016, while his wife stepped out to get ice cream, our daughter by his side, he took his last breath. The details of that moment are her story to tell, not mine, so I won’t share that here. But know it was powerful and beautiful and full of love.
Since that time my daughter, my husband and I have talked often about how we wished it could’ve been different for her father. We talked about how we would’ve welcomed him into our home and attended to him. How we envision that he would’ve wanted things to go. We all wanted a ‘good death’ for him and while the last moments were precious, the months leading up to it were not.
I know in the marrow of my bones that this was not a death of his choosing, even though I have to accept it was the result of his choices. I know it would have been very different if we had still been married, or even if he had just not had this someone in his life.
But it wasn’t my death.
And that is the most important thing as an end-of-life doula we must understand. It is not our death. When we are asked to doula for someone we are there to support their decision making, not steer them towards particular decisions. Our biases are to be left at the door. We are not to push our own agendas, no matter how perfect we think they are.
Individuals must have autonomy in their dying, just as in their living. Their rights must be protected. In this case, while in the end he was taken advantage of and swindled, and we don’t believe he was directing the journey of his treatment, he made the earlier decision to have this woman on his journey.
Despite all of this, our daughter and I did everything within our power to allow him space for autonomy over his transition. We felt that was our duty as human beings who loved him. Not to push our agenda, but allow him to create his own. While we feel that he was not in control of his treatment, he certainly was in control of his last moments, choosing to leave when it was just him and his daughter.
It is hard for us to find the peace in it sometimes. We had such a beautiful vision for his journey, based on the decades of conversations we had. Because of our long history together, we believe we knew him better than anyone else. We believe we know what his ‘good death’ would’ve looked like given different circumstances.
But it was not our death and we have to find solace in the fact that we supported him when he needed it most, in the moments we had with him.
When you read end-of-life doula stories you hear some amazing stories that read like a Hallmark movie script; but that just isn’t always how it goes. It’s important to know that.
People are complicated and die the way they live. An end-of-life doula is meant to support the individual and their family (the ‘unit’) in a way that is harmonious with their situation. An EOLD enhances, they never take over, overshadow or override the individual or the family. They are meant to assist the unit in creating their own highest experience.
NOT to script or direct an experience of the doula’s imagination.
Yes, my daughter and I fantasize about a death we feel would’ve been ‘better’, but -again- it was not our death, so we have come to accept peace in knowing that we absolutely served our role in enhancing his death to the level allowed.
I would’ve scripted a different movie for his transition. What I would’ve scripted would’ve made my daughter’s healing of grief a bit less complicated. What I would’ve scripted would’ve been the stuff of Oscar winning movies. What I would’ve scripted…
Being an end-of-life doula means I support the script of the one making the journey. It’s not my death.