Palpable Gratitude

“…judicial orders act to deprive the ward of the right to make decisions on her own behalf with respect to care, treatment placement, support and maintenace.” I read the lines of the Statement of Duties and Responsibilities of a Court-Appointed Guardian. I take notes in one of my now three notebooks, this one titled “Lois.*” Cognitively, this makes sense. Emotionally, it is devastating that a daughter would ever have to petition a court of law for guardianship over her mentally incapacitated mother. Writhing and twisting with the palpable torment of what she and I are facing, I find reasons to leave that document, sent to me by my Elder Law attorney, and seek solace in writing. Reminiscent of my middle and high school days composing essay upon essay, writing was all but lost on me until my father’s unexpected and tragic death, compounded by the trauma of losing my mother to dementia and severe mental illness. But a skill earned is never forgotten and I feel gratitude for this skill, this outlet afforded me during this chapter of my life.

There are two significant limitations for guardianship: 1. Always act in the best interest of the ward; and 2. Supervision by the Court. Lois’ care is utmost priority and treatment and decisions must be made with her “dignity and personhood” in mind. I will direct her care, make treatment and placement decisions and the Court will supervise me. No less than nine points must be addressed in the Guardian’s Annual Status Report, a written document that is submitted to the Court on or before the anniversary of the adjudication. These nine points include: the address of the ward, the address of the guardian, the number of times the guardian has visited with the ward; a summary of said visits; any institutional treatment plans and guardian’s opines on same; summary of last physician visit; current physical and mental condition and any major changes to her condition; the guardian’s opinion on her continued need for guardianship; and finally, a summarized plan for the upcoming year. More writing.

Lois is in fair health, despite her 76 years and lack of taking any initiative to improve herself physically; it is her mind and behaviors that limit her to the point of needing a guardian. This means that I will need to be exercising fiduciary oversight for her long term care needs. She could live a long, long time, disintegrating into deeper dementia. Death during life, if life is defined as our souls and personality. She can no longer make safe decisions, she lacks insight and exercises poor judgment. She is argumentative, contrary and exceedingly hostile on the unit where she is presently hospitalized. Being somewhat savvy clinically, and always having had an interest in mental health (I worked as a psychiatric and medical social worker prior to having children), I assess her symptoms and behaviors and have deep compassion for the behaviors of dementia – the confusion, paranoia, memory, processing and executive functioning deficits – but little for the severe personality disorder behaviors. Compassion and sympathy for the depression or bipolar disorder of which she has suffered – untreated – for decades. Compassion here, anger there. My forgiveness is a journey. It is a palpable one, and it rises within me.

Tonight I write from the freshly cleaned desk of my father, the late Harrison Steves.* It overlooks the ample great room, the dark wood railing circling it much like a prison yard. This home was long sought after – Lois always wanted a large home and when circumstances allowed (through a very intricate arrangement, the subject of future Blog post), Harrison built it for her. Built it. From the ground up. Dad never did anything small; he was all in and made an impact, made the biggest impression he could. His office was the easiest to clean in their home, after the carpet cleaners came to remove the years old pet stains, it was only dusting and going through papers. So. Many. Papers. What one learns about one’s parents upon their death through paper, is palpable.

The events of the last five weeks have changed me. There is strength and tough decisions, courage and exhaustion. I am grateful for this. Palpably grateful. And that, too, rises within me.

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