First Clues in the Puzzle: Blog Entry #3

Symptoms of Posterior Cortical Atrophy:..."appreciating the spatial location of objects around them (for example missing when reaching out to pick something up, finding it hard to press the correct buttons on the telephone, not seeing something you are looking for when it is right in front of you)... from www.raredementiasupport.org

 My mom has always LOVED talking on the phone. And, wow, could she talk! Unfortunately, I do not share this gift of phone gab. It took me years just to work up the courage to call in an order for a pizza.  I am not kidding.  Yes, I know this is pathetic.

Over the past several years, my mom's phone calls became incredibly long and rambling.  She would repeat stories.  She would ask the same questions over and over.  I found it difficult to end phone conversations.  My mom would sometimes feel hurt or angry when I would tell her it was not a good time to talk.  She would say, "Well, it's never a good time to talk with you! You just seem to be too busy"  Or she would seem to ignore my comment and go on with another rambling story.  I lost my patience and would get very frustrated.

I recognize this now as an early sign of her disease. It was the start of her (our) walk through dense, unmarked woods. I think she was anxious about things she was forgetting. I think she was probably starting to feel like something was not quite right.  Perhaps the long calls were also ways to remember news she had heard.  A "public" record.

At some point, the phone calls lessened in frequency. And then, recently, I realized that they had stopped. My mom is no longer able, on her own, to punch in the buttons on the phone.  Benson's Syndrome (PCA) creates great disturbances in visual perception.  She may be able to see the digits on the phone, but she seems unable to translate that to her fingers.  My dad (more like me in his relationship with the telephone!) will make the calls now and hand the phone over to her, often having to remind her how to hold it correctly. Our conversations are light and brief. She sounds cheerful and is always very sweet. Our conversations end after only a few minutes. No long rambling stories. No "agendas."

I have just returned back to my home after visiting my parents for a week.  While I was there, my mom received a phone call from an old friend.  She knew immediately who the person was and was able to respond appropriately to him on the phone. After the phone call had ended, she asked several times if this friend was still there.  She seemed to think that he had come for a visit.  Was she imagining his face when she was talking to him and thus the confusion? Was it because it was a friend she had not spoken with in a long time?  Was it because she knew he might be coming for a visit in a couple of months?  Something is shifting further in her brain. Her connection to the phone - where the voice comes from, who she is talking with, what is being communicated - is changing and, I know, will change more dramatically over time.  I dread - DREAD - the day I call and she does not know who I am.

So now I think I would welcome back those long rambling phone calls.  I would welcome back our debates and our challenges with each other and our eye rolling and... our passion.  Because that's one definite thing I can say about my mom.  She was (and IS) a person of passion.

I am thankful for each day I can still call my mom and she says, "Hi Becky!" I it is hard to believe - after my lifelong dislike of the telephone - that I look forward to making that phone call every day.  It's all I want to hear.