When Words Fade

Before I could get a diagnosis, I needed to get Power of Attorney for my sister. Luckily, I knew of an Elder Law firm where a friend of mine worked. The three of us met and discussed some legal avenues we would need to explore. Mary Kay, still not sure if anything was wrong, was a trooper. She put her trust in me and in the attorney. We easily determined a financial plan. Since we really don’t have a lot of wealth, i was very clean that we would each be POA for one another (fiscally). The medical POA was a bit more of a procedure and many roadblocks. In the state of Wisconsin, two medical professionals need to “activate” this right and responsibility. This can’t happen with the person in question being of sound mind. Roadblock one!!

I knew something was wrong; Mary Kay really wasn’t sure. Her Primary care provider couldn’t share any information with me and I felt my hands were tied. Finally, I had a heart to heart talk with my sister and told her that while I truly respected her privacy, I felt the need to accompany her on her next Doctor’s visit. At the clinic, I asked to meet with the Doc, who knew that I was the only close living relative and the Doctor agreed to meet with both of us separately. I was given a series of questions and a n agreement was made that Mary Kay needed to see a Neuropsychologist.. We made an appointment several months out in Duluth, some 80 miles away.

Mary met with a team while I waited in the waiting room for several hours. Finally I was included in a conversation with two Psychologists and a nurse where it was diagnosed that Mary Kay had Primary Progressive Aphasia and Frontal Temporal Dementia. . I still was not privy to be her spokesperson and she as told to pay attention to deteriorating conditions. Speech was already a challenge for her, but she was able to communicate. The dementia was less noticeable. She was given an appointment with another Neurologist in three months which is where she was told to stop driving (she really wasn’t driving anymore) and to begin a search for assisted living. Still no POA for her medical needs.

I was banging my head against the wall because no one could talk to me. We knew, I knew things were getting worse, but I could not speak for her, and no one could discuss her situation with me. Three more months passed and Mary KAy had basically slipped into a silent shell. She no longer participated in conversations, no longer knew where basic things went in her kitchen, which was her domain most of her life. I sensed depression setting in, but even if I pissed her off, she showed no emotion. no more smiles and no anger. silence. If she spoke, it was one or two words that needed to be repeated and very soft volume.

My panicking intensified. I finally asked to see her doctors again. Mary Kay and I saw a Physician’s Assistant to her Neurologist who was an angel. Within two hours, I had full Power of Attorney and a roadmap with no destination in sight, but possible resources and many questions. Our journey together was in full swing. I, a single man by choice, was now acting as a fulltime 24 hour a day, seven day a week caregiver for my sister. My sister who I love dearly, but never dreamed I would be her interpreter, companion and comforter.

I will share more…more humor, more heartbreak and more stories as I continue down this road. stay tuned!