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.

Wishing for More Time

While my life rapidly evolves due to the changing health of my parents, there are many circumstances that add to the pressures of making sure their golden years are golden. Balancing my finances is the biggest challenge as I work to maintain two homes. It would be a dream to work just one job and make enough money to take care of all of us. The most fun part is creating weekly menus, grocery shopping, and cooking. I LOVE that part. If I could create menus, shop, and cook for 20 people every week, I would. My least favorite responsibility is the cleaning. Making sure my parents are living in a healthy and safe environment is a daily priority. The one thing I need more of is... time.

I always feel so pressed for time. Even when I am broke until the next payday (which is often 4 or 5 days away), all I can think about is how time is running out. The changes in my mom are becoming more and more visible. My dad has discovered a sudden burst of energy and responsibility. Yesterday, he sneaked out of the house on his own, in the rain, and drove to the doctor. He also jumped in yesterday and helped with mom's medicine. On days like that, I feel more pressure to take care of my dad better. Part of that effort is making sure my dad has time to connect with his brother.

My uncle who is a priest and a Franciscan monk, also has Alzheimer's. Six years younger, he is my dad's only brother. He was diagnosed a few years before my mom and his order shipped him off to Wisconsin to an assisted-living home specifically designed for Franciscans. I have been able to take my parents to see him twice but now,  my uncle is swiftly declining.

Much like my grandfather, my uncle has recently become a bit aggressive and this has resulted in a shift in his residence. We used to be able to take him out with us. We could go to the lake or shopping or to a restaurant. But now, he is restricted to the property and every report comes with news of more change.

This summer, we will make the 7-hour trek to Manitowoc, WI to see my uncle again. Tearfully, my dad informed me that this could be our last trip to see my uncle. I extended our plans. We will stay a little longer so my dad can just sit with my uncle. We will celebrate my uncle's 45 year anniversary as a monk. There will be a special mass. We will also celebrate my dad's 77th birthday and my nephew's 14th birthday. We will spend TIME with family. Time which will inevitably feel too short. As it does every day.

I worry that seeing my uncle will create a greater fear in me regarding the future for my mom. But I will be strong because it is what I do. And I will keep working to make sure my parents' senior years are good and safe and as perfect as possible. And I will work three jobs if I have to even though it will take away from the time we so desperately need.

The clock keeps ticking and I keep chasing after every single minute with no regrets.