Last March, mom and I returned to the city my mom called home for 35 years. A trip for my mom’s eyes ended opening mine.

This trip had three goals –

• First, get mom to an appointment with her trusted ophthalmologist.
• Secondly, allow mom to spend time with a few of her closest friends.
• Third, allow her to have time without any interactions that could cause her stress – so relaxation.
• As a benefit, she was to be my only responsibility for the week thus a little relaxing for me as well? (Said no one that is a caregiver.)

As we left the airport on our drive to the beach, it was dark and raining. In her excitement, she read ALL the street signs, some went by faster than others – but she was still able to grab something off each sign. Streets that had been daily thoroughfares, brought comments like, “Hmm, that must be new.” I responded with references to a time before and physical landmarks that were on that road hoping to aid her with recall.

We never spent too much time on any one street name, since the next sign kept popping up as we traveled 55 miles per hour. (yes, I did the speed limit – it was dark AND raining!) I didn’t put a whole lot of weight in this lack of recall since we had been on two airplanes during a long day of travel.

Our first morning, she seemed calm watching the waves crash on the beach from the couch in our suite. Temps were rather brutal and unnecessarily windy, so we remained on the couch. I went about finalizing plans for her to see friends. Mentally mapping out routes in order to take her by familiar sites. What would she like to see?

Our first friend outing, a dear woman who had become bedridden since mom had last seen her. She had been one of mom’s closest friends. On the ride over mom began “preparing herself” by asking basic questions. She knew her friend’s name and had some insight regarding Tonya’s life. But just glimpses, not how the pieces fit together. I tried to assist with the memory as much as I could. Once we arrived, mom seemed confused, the person in the hospital bed in front of her was not who she was expecting. In my mom’s mind, too many factors were out of context (including a hospital bed in the living room and aging that comes from constant pain) for the pieces to result in connections . Throughout the visit, much of the conversation was in the present. At one point, Tonya asked my mom what she does with her day. My mom turned to me and said, “I’ll let you answer that for me.” Straight forward questions, mom was not able to answer. It should be noted, my mom somehow was able to redirect the conversation to her friend. So Tonya spoke and mom just nodded timely.

We left lunch with a plan to visit her again before we left the beach. The second visit did not come to fruition. Mom was so disturbed by how confused she was following the first visit, I chose to never mentioned going back.

Sunday at church was the next meeting with friends. I knew when it was suggested that we meet at 8:15am Mass, it would be a stretch to get mom up, fed, dressed and to church in time. Ahh the realization, it is “spring forward” weekend! That will not bode well in our favor. I relayed my concerns that we might not be able to make that Mass to my mom’s friend. The response was, “All I can do.” Hmm. “Ok. We will try.”

We hit the hay earlier than normal that Saturday night – after a little Big East Championship Basketball. Then slept. Mom’s sleep isn’t restful. After she drifts off, the dreams/nightmares begin. Followed by acting out those events that are playing in her head. Words. Legs. Screaming. Anger. Thrashing. This symptom of the disease takes a toll on daily life (hers and mine on this trip since we shared a bedroom). There is no expected amount of time each night that she will be in this phase. Regardless, one can understand why she wakes up tired, then needs to nap. I am sure you have guessed, we did not make it to 8:15am Mass.

Her night episode had ended about 5 minutes before the alarm. She had finally found rest. I chose not to wake her and shut off the alarm before it could wail. Later that morning, I received a text “hoping nothing was wrong”. I responded that “as I previously indicated getting to 8:15a Mass, would be a challenge.” There was no follow up text. Mom knew nothing of her missed friend.

With a free day just to us, we wandered through a few antique shops. It was an easy, happy day. Then an early evening back at the hotel. We talked while we ate dinner, enjoying the sunset over the water. Rare moments with my mom without other distractions – I was able to soak her up. Small blessings!

The following morning we met with the doctor for whom we had travelled so very far to see. This doctor, mom had trusted for all the years she lived in Virginia. One of the symptoms my mom struggled with was her eye sight. We had seen multiple physicians in Indiana, each completing thorough exams. Results were the same. Her eyes were capable but declining. The disease was impacting how her brain interpreted the information being sent from her eyes.

Her trusted ophthalmologist was amazing! The diagnosis wasn’t different, the delivery wasn’t different. However, the person delivering it was. He was a trusted face that she recognized and I repeat, TRUSTED. In the end of yet another complete exam, he suggested that she wear “readers for reading”, not her prescription lenses. She wasn’t using the bifocals properly any longer. Her eyes were confusing her mind since she was not always using correct part of the lens for it’s intended purpose. He gave us the ideal strength for readers, but impressed upon me that I needed to not purchase more readers – what was in the house already was “perfect” regardless of strength. This was a genuine. It wasn’t sarcasm or intended with any disrespect. It was heartfelt and hit me hard.

My mom was almost joyful leaving the doctor’s office. I took the opportunity to drive her by more places that should have sparked joy. Unfortunately, her home, her neighborhood, her church (even with a tour inside) ignited zero recognition or memories. This too hit my stomach with a packed punch. Somewhere in my heart, I held out hope that when we drove by her house, she would come to life. She looked out the window like she had never been there. Tears rolled out of my eyes.

Like so many other days, I called an audible. We left the old neighborhood.

Each day of the years leading up to this week, were real. But now, my last glimmer of hope (that she would ‘just recover’) had left. This was her path. At the end of my tears, I decided to make the most of each encounter with my mom, starting with the remainder of this trip. I do not know if everyone has such a hope, I was not aware of my hope while I was buried in the day to day. However, I knew the minute it was gone.

I arranged a meal with another one of mom’s dear friends. Betty and mom had traveled to Japan together. Mom recognized her immediately! She looked as mom had remembered her. It had never occurred to me to worry about my mom not recognizing her friends. (This narrows her circle of people recognition. Something to tuck away in my mind.) Back to topic – it was a wonderful meal with lots of chatter. Following lunch, mom talked non stop on our ride back to the hotel. Success.

That night I laid in bed fully aware that I needed to capture and treasure each moment with my mom. (I know I already mentioned it.) This trip was eye opening for me. I would not have necessarily had this awakening if we hadn’t traveled. What awakening? Fact – mom’s disease had progressed further than I was aware of based on daily activities in her ‘safe’ environment. As a bonus, the long complained about eyesight had a solution. (Not a new solution- mind you).

I asked myself what was the goal of this post?

I wanted to reiterate the importance of giving our loved ones the respect they need. Hear their concerns. In this case, mom’s vision was the concern. The resolution we ended with brought her peace and piece of mind. She felt heard. Admittedly, ours was an extreme solution. I knew the diagnosis would be the same. It didn’t matter what I knew, it was about finding a way for mom to ‘hear’ the news. It was important to me to try and find someone that she trusted to alleviate this concern for her. None of this changed her disease, but for a second her world felt ‘normal’. She had a health issue, she voiced it, and a doctor acknowledged her concern and gave her a solution. (That isn’t the world the disease has created for our loved ones, they don’t leave a doctor’s office with a finding and a way to resolve the problem.)

There will come a time that deep down in your heart, realization strikes. This is the disease, the final path for your loved one. I experienced it on this trip. I had not expected it or even acknowledged that “hope” for an alternate direction was seeded in my heart. Having the revelation while we were alone enabled me to process some of my emotions.

Finally, I was the beneficiary of mom and daughter time! Albeit not what our time together would have looked like 15 years earlier. However, this might have been even better considering the circumstances. Mom lived in the present and at the present, she was my only concern. No distractions or real world worries- bills, appointments, or deadlines. She was there with just me. If you find a moment with your loved one, immerse yourself!

Most of all hug all the ones you love.

Thank you for being here on this journey with me,

Marguerite

Don’t dwell on the disease. Value the moments, the pearls of wisdom, their smile and humor.

Saint Elizabeth Health Care