Advocating

Advocating With The Right Goals

Ruby – My Mom

Caregivers tirelessly advocate on behalf of seniors across a spectrum of interactions, from family and friends to healthcare providers, insurance companies, banks, and neighbors, ensuring their needs are met and their voices heard. Often, this advocacy extends to helping seniors stand up for their own interests, empowering them to maintain autonomy and dignity in their daily lives.

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.

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The Hardest Decision

Frances, Grant, and Alan’s Story

Frances had always been able to take care of herself, but her recent cancer diagnosis had thrown their lives into turmoil. Her husband, Grant, had been showing signs of dementia, and their son, Alan, was stretched thin trying to manage his own family and career while worrying about his parents.

One Sunday, during their traditional family dinner, Frances decided it was time to discuss a difficult but necessary decision.

“Alan, Grant, we need to talk,” Frances began, her voice steady but filled with emotion.

Alan looked up from his plate, his face a mix of concern and curiosity. “What is it, Mom?”

Frances took a deep breath. “I’ve been thinking about our situation. My cancer treatments are taking a toll, and Grant’s dementia is progressing. We can’t go on like this, relying solely on you. It’s too much.”

Grant looked confused, his eyes darting between Frances and Alan. “What are you saying, Frances?”

“I’m saying we need professional help. We need to move to a skilled nursing facility where we can both get the care we need,” Frances explained, her gaze steady on Alan.

Alan’s eyes widened in shock. “Mom, are you sure? I mean, I can manage. We can find other ways.”

Frances shook her head. “Alan, you’ve already done so much. I don’t want you to burn out. We need more than what you can provide. This way, we’ll be in a place where professionals can take care of us, and you can visit without the stress of being our sole caregiver.”

Grant nodded slowly, though his understanding seemed partial. “If it’s what you think is best, Frances.”

Alan sat back, processing her words. He knew deep down that she was right. The strain of managing both his parents’ needs was becoming overwhelming. 

Alan sighed, running a hand through his hair. “I just… I feel like I’m letting you down if I agree to this.”

Frances reached across the table, taking his hand. “Alan, you’re not letting us down. You’ve been amazing. This decision is about making sure we all get through this in the best way possible.”

A few weeks later, Frances and Grant moved into a skilled nursing facility. It was a difficult transition, filled with tears and moments of doubt. Alan helped them settle in, ensuring their room was filled with familiar items from home to make the adjustment easier.

“I don’t like it here,” Grant grumbled one evening. “It’s not like our house.”

Frances, ever the mediator, added, “You have your own bathroom, Grant. No more fighting over the shower with Alan.”

Grant managed a small smile. “I suppose that’s a good thing.”

Over time, they began to adapt to their new environment. Frances’s health stabilized somewhat with the consistent medical care, and Grant’s anxiety eased knowing Frances was being looked after.

One day, during a visit, Frances took Alan’s hand. “You did the right thing, Alan. We’re safe, and that’s what matters.”

Alan felt a wave of relief and gratitude. “I’m just glad you’re both okay. I love you both so much.”

Alan put his own feelings aside for their wellbeing, accepting that this was the best choice for all of them. He learned to trust in the care they were receiving, knowing it allowed him to focus on being their son rather than their caretaker. His sacrifice, though emotionally challenging, provided his parents with the stability they needed and allowed him to find peace in knowing he had done everything he could for the people he loved most.

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A Clearer View

Nathaniel and Vivienne’s Story

Nathaniel had always valued his self-reliance, but lately, his vision had started to blur, making daily tasks increasingly difficult. His daughter, Vivienne, had noticed the change and was growing concerned.

“Dad, I think you should see an eye doctor,” Vivienne suggested one afternoon as she watched him squint at the newspaper.

“I’m fine, Vivienne. It’s just old age catching up with me,” Nathaniel replied, brushing off her concern.

“Dad, you’ve been bumping into things and struggling to read. This isn’t just old age. Please, for me, get it checked out,” Vivienne persisted.

Nathaniel sighed, finally relenting. “Alright, alright. I’ll go.”

A week later, they sat in the ophthalmologist’s office, where Nathaniel was diagnosed with cataracts in both eyes. The doctor recommended surgery to improve his vision.

“It’s a common procedure, Mr. Harris. You’ll see a significant improvement,” the doctor assured him.

Nathaniel was hesitant. “Surgery at my age? I don’t know, Vivienne.”

Vivienne reached out, holding his hand. “Dad, this could make a huge difference in your quality of life. Think about it. You’ll be able to read, drive, and do all the things you enjoy without struggling.”

Nathaniel nodded slowly, the reality sinking in. “I suppose you’re right. Let’s do it.”

The surgery was scheduled, and Vivienne stayed with her father through the entire process, supporting him every step of the way. On the day of the surgery, Nathaniel was nervous, but Vivienne’s presence reassured him.

“You’re going to be fine, Dad. And once this is over, you’ll see the world so much clearer,” Vivienne said, smiling.

After the surgery, as the anesthesia wore off, Nathaniel blinked slowly, his vision gradually clearing. He looked around the room, marveling at the newfound sharpness of the details.

“It’s like a fog has lifted,” he said, tears of gratitude in his eyes.

Vivienne smiled, feeling a wave of relief. “I’m so glad you went through with it, Dad.”

In the weeks that followed, Nathaniel’s independence was restored. He could read his beloved books, tend to his garden, and even drive again. One sunny afternoon, as they walked through the park, Nathaniel turned to Vivienne.

“You know, I was scared of the surgery, but it was the right decision. Thank you for nudging me,” he said, his voice full of gratitude.

Vivienne squeezed his hand. “I’m just glad you’re happy and healthy, Dad.”

Nathaniel smiled, looking around at the vibrant colors of the park. “I didn’t realize how much I was missing. It feels like I’ve got a new lease on life.”

Vivienne nodded, feeling a deep sense of satisfaction knowing that advocating for the right medical intervention had significantly improved her father’s quality of life.

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