The unexpected setback

Caretakers of people diagnosed with Alzheimer’s or other forms of dementia know that even the most fluid and comfortable daily routine can be interrupted by the slightest thing: a stuffy nose can be cause for alarm, a clumsy stumble into a chair causing a bruise, water going down the wrong way and causing a coughing fit. Most of what one reads about this disease creates a picture of slow, steady decline, but in my experience the reality is more like a boat on the sea. It can be calm and beautiful, peaceful and serene for a bit, and then the wind picks up and there’s a gentle bobbing up and down that eventually feels manageable. But if bigger waves arrive, you cling to the side of the boat, fighting nausea, and wanting the motion to please, please just stop.

Nerves and neck bones don't
always get along

So it has been for us the past week. First, there was a return of neck pain due to cervical radiculopathy, a pinched nerve that can cause tear-inducing pain through the neck, shoulder, and arm. In desperation, because it was a weekend, I gave my mother the medicine she had previously taken about a year ago, Gabapentin, which is effective but we were glad to get her off it. Although it worked to help the pain subside, it caused great drowsiness. I tried my best to help my mother do the regular exercises that I learned from her physical therapy back in New York, but she was increasingly stiff and unable to turn and tilt her neck. Still, she managed a dental visit to have a permanent

Our traditional Thanksgiving plate

crown fitted, and a Thanksgiving weekend visit with our friends from Reggio Emilia complete with a big roast turkey lunch, and even dinner out the night before. Sunday we went to see our friend perform in a comedic play, and the week that followed was pretty normal, with a social invitation for tea with our neighbors Sunday afternoon.

The following Monday we celebrated because I passed my driving road test, the final hurdle to obtaining an Italian driver’s license. This had been weighing on me since the summer, and it had taken two tries to pass the true-false theory exam as you can only get 4 questions wrong out of 40, and about 10 are really tricky even if you study as if you have to pass a bar exam. But my mother was

Mimi knows when my mother needs her

weaker and started using her cane again, and by Thursday I had rented a walker. Friday was spent mostly asleep in bed, but I managed to get her to the doctor’s office for a 7pm appointment. Her regular doctor was away, and had reassured me on the phone that her colleague would handle whatever was causing the decline (and that might simply be a curable infection). Doctor Bacci was so charming, and having spent a few years in Cleveland and Brooklyn, spoke perfect English. He listened carefully to her lungs and heart, and prescribed a course of antibiotics, switching her from Gabapentin to Tylenol with codeine at half a dose, and ordered some blood work.

By Sunday she could no longer walk or even stand for more than a few moments. The blood work revealed anemia, so we began treating her with iron and vitamin B12 shots. The company that handles her lab work, Bios, also provides at-home nursing care, so I got badly needed help in bathing her in bed and getting other tests done. She continued to eat and drink, although this was all more difficult, but we figured out what worked best (thank goodness for children’s sippy cups). I bought a bedside commode so she could be spared the indignity of giant adult diapers, which she kept trying to rip off at night. As usual, patience and humor paid off and now she seems to have turned the corner back to healing and health and I am finally breathing sighs of relief.

What I have learned is that the unexpected setback, even the most difficult one, is a kind of test to see how to manage stormy seas. Like other challenges in life, it can be viewed as a learning opportunity and provide a window into how to better manage the next curve ball life throws at you. Watching the nurses, I learned a few tricks about moving my mother’s body without hurting her, and found the strength needed to get through nights of sleeping and waking not unlike what new parents go through as their babies try to adjust to life outside the womb. I thought about the young people from my driving school who also passed the road test and now were going to have to cope with the wild west traffic of Rome (although having lived here they are probably more used to it than I am). It takes a close call, or even a fender bender to appreciate the importance of being extra cautious when driving in city traffic.

I know it seems strange, but I feel more ready to accept the end of life when it is coming. My gratitude for the help in seeing my mother through the unexpected setback gives me renewed joy in every precious moment we get to share, no matter how hard.