The Angry Caregiver

 I have adopted project management frameworks and workflows to survive my caregiving mission. My training as a professional project manager is helping me and my family to mitigate (but not eliminate) the known risk of increasing socio-economic vulnerability correlates with our lengthening caregiving timeline.  The irony of this relationship - increasing caregiving socio-economic vulnerability / length of caregiving timeline - is that the length of our caregiving timeline is in direct relation to the quality of caregiving we are providing to our dear Mom.  The cost of the quality of care we deliver extends our caregiving timeline while causing longitudinal depletion of our soci-economic capacities and capabilities. It is a tough situation to be in.

We did not know what we were getting into.  We knew that Mom was aging out of her place in the mental health group home she had lived in for forty years. We knew that she had been assessed as mentally competent enough to become a resident in a long term care facility, if that was to be her next move. In 2016 Mom had a health crisis. She was losing weight and complaining of stomach pain. My sister and I assumed the responsibility of getting Mom's paperwork in order - Power of Attorney, Will, and Representation Agreement. She ended up in the hospital and was diagnosed with an ulcer. After she was released from the hospital she had a bad fall and had to go back in for an injured knee. At that time we learned that Mom would no longer be able to go up and down the stairs to her second floor bedroom. Luckily, the bedroom on the main floor of her group home was made available and Mom moved in and stayed another six years in residence. In late 2020 (Dec 16, 17) Mom had two falls in a row. ...

Mom reading David Copperfield to Adele, the dog The good news is that Mom's health and medical status have improved. The Nurse thinks Mom will be moved to Long Term Care status when a case manager becomes available. At present we do not know what this change will mean, or what additional resources it will take from the family to take care of Mom at home. I mentioned to Nurse that my estimate is that Mom is given caregiving attention every 30 minutes during waking hours - whether it is adjusting her position, her clothing / comforters, beverages, snacks, meals, playing games, talking, managing bowel movements, administering medications, would dressing, personal care, etc. Nurse replied that a recent study of Long Term Care time spent caregiving individual patients was an average of 2 hours in a 24 hour cycle (or 5 minutes per hour). In this scenario, Mom would not have the freedom to sleep, eat and get dressed as she wants, she would have to conform to the institutional schedule. In...

 of caring for a special needs human being? Can we quantify that and make rationale decisions about supporting our community and family members who do not fit within 'normal' economic production frameworks?