I wrote the book, “The A to Z Guide for Primary Caregivers of Dementia Patients” for people like me who entered the world of dementia caregiving with little or no understanding of what to expect.
I did know that my husband’s dementia was progressive and irreversible.
So, eight years later his dementia progressed to the point where he had to be admitted to a facility for dementia patients.
What is my role now? Instead of primary caregiver I describe myself as Advocate/Caregiver. The nursing staff and the support staff have the primary responsibility for his well being. I assist by sharing information about what he is capable of doing. That changes periodically. For instance, he began eating his meals with his fingers. It took me a moment to realize he had forgotten how to unwrap the napkin where the utensils were. He was not able to open a small carton of milk. I noticed these things and was able to share the information with the staff so they now know how to present his meal tray.
In addition to advocating for my husband, I am looking forward to taking my power point on the road! I am looking forward to addressing audiences of folks who ask, “What next?” I think I have some answers.