Being well-informed about the health condition is crucial to being a successful advocate. However, even when I thought I knew the best, it did not always turn out to be the right next step.

In the complex journey of caregiving, the line between being well-informed and facing the unpredictable nature of health conditions is often blurred. Despite my earnest efforts to advocate for my mom, the path was fraught with unforeseen turns and moments of crisis that tested the limits of my knowledge and resilience.

One day, I got a call from my dad in a panic, “Mom is not responding at all… They are calling an ambulance… What should I do?” 

I responded to him in a calm voice, “I am here for you dad, let me talk to the nurse.” 

The nurse in the assisted living facility explained, “Your mom was at the dining table with her head down and your dad was trying to wake her up to eat for more than thirty minutes. We have tried everything, and she shows no response. We had no choice but to call the ambulance. I think she has had a stroke.” 

I did not want to accept her analysis. “You know there are times that it is hard to wake her up from sleep,” I told the nurse.

“I think this is different, she walked to the dining table, sat down and a minute later she was non-responsive,” she argued. 

I had to agree. The nurse put me on hold for a few minutes as the paramedics checked my mom. 

I could hear several distinct voices in the room but could not follow exactly what they were saying. The nurse came back on the phone after what seemed like hours, although it was probably just three minutes, and informed me, “They are taking her to the Emergency Room.” 

My heart was pounding. “Will you be sending her to Scripps Hospital?” I asked the nurse on the phone. “Please take care of dad, I know he will be very unsettled. Please let him know I will call him as soon as I start driving there.”

After several hours at the hospital, it was confirmed that she did not have a stroke and it was “just a UTI – Urinary Tract Infection.” I have had few such infections over the course of my lifetime, but none that resulted in symptoms like hers. The “just a UTI” caused so much panic and grief for my overprotective dad. I asked what we could do to prevent those in the future. The doctor in the Emergency Room said, “You can try to minimize those from happening by adding cranberry tablets daily to her diet and making sure that she keeps herself very clean. It’s not entirely possible to prevent these completely.” I knew that keeping her clean would not always be easy, given her Parkinson’s Disease.

Just weeks later, she ended up in the Emergency Room with the same symptoms. This time I had just come home from a difficult day at work with my boss. I had invited him over for dinner at my home as he was visiting from out of town. It was 7:30 pm and I was frantically trying to get dinner ready as my boss and husband socialized. I had not eaten all day. I was helping my ten-year-old daughter with her homework while I was cooking, when I got the call. “I am so sorry Rosie, but they are taking mom to the hospital again,” said my tear-filled dad. I could barely hear him, as his voice was so low. I apologized to my boss, husband, and daughter, dropped everything, and drove to the ER. 

A few hours later, my husband brought me some food on his way to drop my boss off at the airport. My daughter stayed up late that night even though she had a test the next morning. I stayed up all night waiting for my mom to wake up. At 4 am, she woke up and was fine. It was “just a UTI” again.

My mother had a couple of other UTI episodes when she moved in with my brother after my dad passed away. Luckily with the help of a great family doctor and the knowledge I now had from the two previous episodes, we were able to catch these before they became severe.

After a year at my brother’s home my mom moved back to my home. Her health kept declining. One afternoon she fell asleep for over two days. No matter what we tried, we could not wake her. I thought she probably had another UTI. I called her primary care physician and asked what we should do. “You should call the ambulance and take her to the ER,” she told me. I followed the doctor’s instructions and a day and a half later my mother was discharged when she finally woke up. This time, it was not a UTI. It was probably related to her Parkinson’s disease which sometimes left her unresponsive for days.

Less than two weeks later, I learned my mother had not urinated in two days. Given that she was only drinking about one bottle of Glucerna (the nutritional shake) with not much else, I waited another twelve hours before calling her doctor. After her last Emergency Room visit, my mom had made it clear that she did not want to go back there under any circumstance. 

“You need to take her to the ER,” the doctor told me. I was not sure if two weeks earlier the Emergency Room staff had not done proper testing or if this was newly acquired, but here we were once again. 

“I am never coming to the Emergency Room again,” my mother told me, the strongest level of conviction I had heard from her in years. 

After that episode, my mom continued to decline rapidly. I took her to her primary care physician and her neurologist for check-ups and to discuss her strong wish to not have to go to the Emergency Room again. Given her condition, both agreed she should be moved to palliative care. They informed me that it means that our focus will be completely on her comfort and her wishes. No matter what she wishes to eat or drink (or not eat) we would respect going forward. 

This transition was difficult for me to accept and implement. Not nagging her to take her meds, not asking her to eat, and just focusing on her wishes was a difficult transition for me. It made me have to advocate for her wishes without my protective daughterly tendencies.