You might be interested in the statement I wrote about it:
JUMPING THROUGH HOOPS
by Francie Allen
Fluid transparent bodies – visceral and sculptural – cast their shifting shadows in my invented public spaces. These undulating figures are fashioned of wire netting and other lacey materials, a perfect foil for special lighting effects to create environments of shadows. Many years as sculptor, drawer and dancer have led me toward making multi-sensory installations. Here I sculpt, draw and choreograph events that invite further manipulation and creative action by dancers, musicians and college art students – all adding their part to the community experience.
I wrote this Artist Statement in 2014, when – happily absorbed with my own artistic career – I was suddenly required to change directions. My beloved husband’s troubling symptoms of cognitive decline worsened into Alzheimer’s disease. My artistic momentum sputtered as I scrambled to redefine myself as a primary caregiver with the social, medical, legal, and financial tasks required in assuming total supervision of my soul mate’s life.
What gave the situation a painful twist was my partner’s intention to end his life early if he was ever confronted with Alzheimer’s dementia, a disease his father had suffered. As a professor of philosophy, my husband always maintained that he would rather self-deliver than gradually lose all of his cognitive powers or burden loved ones with his increasing care needs. He requested of several trusted friends to honestly tell him when it looked like he was nearing the end of his window of lucidity, where he would no longer have the mental competence to end his own life. Even though I came on the scene rather late, I too became one of those “guardians.” In order to truly support my husband I had to examine very deeply whatever personal agenda I might have around the question of whether he should die early or live on and decline from the disease.
Because Alzheimer’s erases short-term memories and leaves the long-term ones relatively intact, my husband was only aware of his determination to end his life. However, as the time drew nearer and nearer he became more and more anxious. He tried to resolve the conflict between his long held intention and a more authentic drive to live, by declaring that he did plan to die early – “just not yet. Later. I’m not ready yet.” So all the planning and initiative fell upon me. I finally had to set the date for him to VSED – Voluntarily Stop Eating and Drinking – the only legal and safe way for a person with dementia to choose to die, in the state of Washington. My partner’s angst grew as the date approached, until I finally had to call it off. I had to make that ethical choice for him. As a result we agreed that he would live out his days with the deepening deterioration of dementia and I would support him to do that, as long as we could live in a space of love with each other.
Thus I found myself performing a crucial function for my husband that I did not at all desire to do. Yet, because we had created an environment of love which we inhabited together, I found myself jumping through the hoops of first guiding him into an abortive death process and then caregiving him through a degenerative disease. My love for him both forced and allowed me to make those choices.