Advocacy moves to the forefront of caregiver skills with the care facility era. This was not ‘in the cards’ nor anticipated
Everything is centralized in the caregiver when at home. While this is certainly suffocating for the caregiver it is also extremely efficient for the spouse with MS.
The caregiver is a walking talking database of medical history. With time the caregiver’s diagnostic abilities can rival any Neurologist’s
With the care facility era, the introduction of a “team” or shifts complicates and confuses day to day management of MS symptoms.
For example I just discovered that one of the fundamental sources of so much communication frustration has been that Patti was being seen by the wrong doctor!!! She’s been there for three months and that was just caught
Patti’s medical records, my notes, questions, and observations have been sitting idle and unread in a file to the attention of a doctor that has never seen Patti!! I could scream!!!!!!!!!!!!
No wonder I find myself banging my head against the wall so often monitoring and trying to manage Patti’s treatment.
She was misevaluated by physical therapist day after admittance, which took me over several weeks to catch and correct.
And now I learn the wrong physician examined her day after admittance.
Institutional thinking and mindset can be so sluggish and more focused on putting information in a file than actually reading it.
From caregiver you need to morph into patient advocate. Different focus, different sense of urgency, and new and different skills. From the isolation and suffocation of home caregiving you now need to succeed in the political and institutional world of a medical facility.