Entering A New Phase of Alzheimer's

The call came three weeks ago. My uncle, who is in a nursing home designed to care for Alzheimer's patients, lost his ability to speak. Growing concern for his inability to communicate caused his dear friend and caregiver to pick up the phone and share the news.

With the call on speaker phone, my dad attempted to chat with his brother, who is younger by six years. My uncle stayed silent on the other end. My uncle's friend Henry, another priest and Franciscan monk who studied with my uncle and knew him for roughly 45 years, responded instead. He encouraged my uncle. "John, do you want to say hello to your brother?" Henry prompted to no avail.

Finally, I spoke, "Hello, Uncle John!" Henry reported that my uncle's face brightened as a broad smile spread across it.

"Do you know what Tuesday is?" I asked.

"No," Uncle John finally responded.

"It's my birthday!" I proclaimed.

"Oh!" He replied again.

Henry interjected again, "Do you want to sing "Happy Birthday?"" And, together, Uncle John and Henry sang "Happy Birthday" to me.

We decided after that conversation that a visit to Wisconsin was imperative, even if the seven hour drive had to take place in driving snow. It would be March after all, and Wisconsin winters were never as forgiving as they had become in St. Louis, Missouri.



So, last Friday, we loaded up the car and drove to Manitowoc, WI. After spending Friday night arguing with one another and going to dinner, We visited Uncle John three times: twice on Saturday and once on Sunday morning. Our time with him proved as heart wrenching as it was lovely.

To my sister's credit, we purchased some sweets for our first visit which took place on Saturday morning after Henry took Uncle John to church. While Alzheimer's has stolen my uncle's ability to communicate, it has not yet confiscated his sweet tooth. We ate donuts and laughed at silly things for probably far too long. And then my uncle went down for an afternoon snooze.

On Saturday afternoon, we returned to the nursing home to find my uncle inconsolable. He cried uncontrollably. That said, he did speak, saying, "I've had a rough time." We all hugged him many times. He loves to hug. He holds you tight and kisses you on the side of the neck. Sometimes, he holds on for a very long time. It was a difficult experience. It shook my nephew and my dad. My mom cried with him. My sister and I stayed strong and tried to remain reasonable. He was not crying because he was sad. He was just crying. And we knew there was nothing we could do.

Finally, on Sunday morning, we popped in for one last visit. There were no words on Sunday beyond a "yes" or an "uh huh" but there were plenty of smiles and lots of laughter which seemed like a good note upon which to end our visit.

Alzheimer's wages a cruel battle upon its victims and the families who love them. The endless unanswered questions are unbearable. Accepting that nobody really knows what is going on in the mind of someone afflicted with torturous disease does not make enduring it any easier. If only they could communicate. If only they could tell us what is going on in there. If only they could articulate their pain or sadness and even their moments of joy.

The call that came three weeks ago forced our whole family into a new phase of life, not just a new phase of Alzheimer's. And, I, for one, am not ready.

Happy Mother's Day

My vivid memories of growing up are very limited. I don't remember a lot about school or hanging out with friends but I have some very strong memories of growing up with my mom. I called her Mother Nature and mother and ma. I don't think I ever called her mommy but that could be my memory failing me once again.

She would lay me up on the kitchen counter so my head would fall into the sink and she would wash my hair, usually twice because it was so oily, and I would fall into a relaxed daze. She pulled a chair up to that same counter and taught me how to crack an egg and eventually how to make pancakes and meatballs and mashed potatoes and chocolate chip cookies. She ironed almost everything, including my dads handkerchiefs, while watching "Another World" and "Days of Our Lives." When I went off to kindergarten for a half day in the mornings, she would pick me up from school, cart me home and let me iron while she folded laundry. I loved watching "Days" with her.

My mom taught me how to keep a home. It was neat as a pin and so clean you could eat off the floors (until we got a dog). She also taught me that every day wouldn't be easy. She cried in front of us, she got angry and would sometimes leave a walk it off and, while others might see that as weakness or maybe even wrong, I know now that she taught me that it was ok to FEEL whatever I felt. Feelings are feelings and nobody can say they are wrong.

I watched my mom with my baby sister (and with many kids that followed as my mom babysat them in our home). She would sit them on her lap, facing her, and she would talk to them and play pat-a-cake, holding their hands and teaching them how to clap and wave and reach to the sky saying, "SO BIG!" Watching her made me want to be a mom more than anything else in life.

She has been married to my dad for almost 50 years. Until a few years ago, she made dinner almost every night and, when my dad was working, she had that dinner on the table the moment he walked in the door. They still hold hands. They kiss each other good night and say "I love you" every single night. They taught me that even though it's hard work, it's possible to love someone "til death."

I am so grateful to have been given my mom as my mom.

Now, we work in the kitchen together. I guide her through a recipe. She can no longer crack the eggs but she is a rock star mixer. I hold her hand as she walks up steps and curbs and distances that feel a little too far for her to make it on her own. There's a little bit more role reversal as every day passes. But I wouldn't change it for anything. I am glad I am here for her like she was for me.

She is my mom. HAPPY MOTHER'S DAY MA!