Saturday Evening Outpost

NOT DEAD YET: PART IV — Morphine and Hospice!?

It was late spring and the sweet scent of peonies and lilacs were fading. Grammy would have had vases of them in the house, picked from the backyard where they had been pampered by the love of her life, my Gramps. They were her favorites, their fragrant perfume filling a room and their vibrant whites and pinks and purples a bold splash of color, just like her. They will forever lay claim to her in my memories. As I picked mine, hoping to hold on to their fleeting beauty, she was all I could think of. We were heading home soon, and the news was her condition seemed to be fading as well.

Over the course of three weeks, Grammy had once again begun showing signs of a urinary tract infection. Confusion, inability to communicate, holding her groin, and painful moans. Mom and her sister tried to be proactive and on each visit would make a point of discussing Grammy’s condition with the nurses on duty, suggesting often that their mother should get a UTI test. There was always an excuse why they didn’t take action. ‘She’s just constipated.’ ‘She doesn’t act like this when you’re not here.’ ‘She’s experiencing dementia.’ ‘She was just fine and talking away before you got here.’ Each time, they were assured she was eating and drinking plenty of liquids. ‘Why she even had a big glass of Pepsi just before you got here.’ Grammy hadn’t liked Pepsi her entire life…

On the night before our road trip home, I called Mom. She went over what was going on and I commented that it was almost as if the facility had decided Grammy was no longer worth caring for. “I feel like they want her to die,” her voice cracked. I heard it then, the maddening teeter between helplessness and rage, the weight of either emotion constantly creating an imbalance such that neither side ever quite makes contact with the ground. It was a never-ending cycle of indecision where any action was hobbled by an abusive relationship. I felt an overwhelming rush of guilt. What she needed, what they needed, was for their family to pull them off the teeter-totter. Something had to change at the facility…or we had to change.

After I hung up, I called my brother and we agreed that he and his wife needed to make it clear that our next actions would be reporting the facility to the state if they didn’t get Grammy a UTI test. After a contentious meeting that evening they had forced the facility's hand and she’d be getting the test in the morning. I’ve never heard him so angry and he left me with a warning… “Prepare yourself…she’s in pretty rough shape.”

To say Grammy was like a single, bright, daisy in the center of a field of fuzzy dandelions that had gone to seed would be an understatement. Over the several years of her living at the facility, she always found a reason to smile and I could always get her to laugh with me. But when we arrived to see her, all had changed. My brother was right. I should have prepared myself.

She sat in her wheelchair, her eyes closed and her tiny hands were pressed into her crotch. She would moan randomly and when I knelt down in front of her and gently touched her arm she recoiled instinctively, opening her eyes. Her beautiful, once bright, blue eyes were glazed over and expressionless, staring into some faraway place that she had gone to manage her pain. I took a deep breath and my husband knelt down next to me, putting his hand on mine. Tears began to burn the corners of my eyes. Sadness first, because there was no stopping the march of time, and our family knew that. But then, I felt anger, because old age was not an excuse for neglect. I put my face next to Grammy’s, our cheeks lightly touching.

“We’re here Grammy, we came to see you from New York,” I whispered quietly, “can you hear me? It’s Timmy.” She didn’t respond so I repeated it again. Her eyes blinked for a moment but that was the only response. “You remember us Grammy, I know you do,” I pressed gently. “Can you hear me? We’re going to try and help you get better.” Suddenly her eyes looked at me and she scowled and struggled to say something. “Look at me in my eyes, you know me Grammy,” I urged her gently, “we know you are in pain. Can you talk to me?” I saw her eyes begin to focus, finding mine and her face softened and my heart filled.

“Timmy?”

I struggled not to get choked up. She was still in there, hiding and unable to understand what was happening to her and why. “Yes, Grammy!” I kissed her on the cheek and she reached to squeeze my hand. She looked at my husband and nodded her head, recognizing him.

“You came from New York.” Her voice was dry and raspy and barely audible.

“We came to see you and we’re going to make sure you get better,” he said.

She took her hand away from mine and pointed to her crotch, struggling to find words. “Pain!” she managed to get out, her scratchy voice a desperate plea. Then she closed her eyes and was gone again.

That afternoon and the following days would prove to be an exercise of running into walls. Walls of misinformation, deception, and complete lack of compassion. From requesting pain management as simple as administering Tylenol, to getting her on an antibiotic, we were shut down at every turn. And without the antibiotic, Grammy continued to get worse. To suggest we didn’t ask enough or weren’t insistent enough would be laughable. On the last evening she would spend at the facility my brother and his wife had reached a breaking point. They picked up Mom and headed to the facility determined to get results. They demanded to speak to the doctor on call, determined to hear from him why Grammy hadn’t been given an antibiotic. The nurse refused to call, but they didn’t take no for an answer, warning again they would file a report with the state. The nurse apologized profusely… to the doctor…for bothering him and whispered that the family was highly agitated. When she hung up, she had an answer. Grammy didn’t have a UTI, she was just constipated and that’s why no antibiotics had been administered!

“She’s not constipated!” Mom was frazzled. “This is ridiculous, we were told on Friday that she had tested positive for a UTI. It’s Sunday and she’s not gotten any antibiotics!”

My sister-in-law asked if they had records of her bowel movements, as it’s standard procedure, and insisted on seeing them. The records showed that Grammy had several bowel movements recently. Clearly, she was not constipated. Then to the shock of all three of them, the nurse told them that it was the facility’s recommendation that they start morphine and call hospice.

“That’s horseshit!” my brother could barely get it out.

“Morphine!?” My sister-in-law spat out, “she has a UTI, she’s not dying! We know she has a UTI, she has all the symptoms and she’s had them for weeks. She got tested. We were told the results!” The nurse repeated the recommendation to begin administering morphine and call hospice.

“You tell the Director of Nursing we’ll be here first thing in the morning and she better have answers.” Mom then went to check on Grammy.

My brother was seething, his language peppered with expletives and a firm directive that if Grammy got any worse she was to be taken to the emergency room immediately.

That next morning, the meeting with the Director of Nursing was combative and filled with misinformation. She said Grammy didn’t have a UTI, just some abnormalities in her tests. When countered with what the weekend nurse confirmed four days ago, that Grammy had tested positive for a UTI, the Director of Nursing said she was going to tell her nurses to stop telling us what was going on! She went on curtly that Gram had blood in her urine for the past eight months and that was why she was in such pain. That was a jaw-dropper… it was the first we’d ever heard of that and keeping it from us for eight months was a clear violation of our rights. The Director abruptly ended the conversation by stating that they would be starting Grammy on morphine and calling in hospice. There was no other alternative.

My mom and her sister were so angry at this point that I’m surprised they didn’t start taking swings at the Director. Instead, they told her that they wanted their mother to be taken to the emergency room immediately. The Director refused to help them and in a nasty tone reiterated that the best thing for her at this point was morphine and hospice. They promptly left her office, gathered a few of their mother’s things, wrapped her in her Cleveland Browns blanket, and rolled her out to the parking lot where they struggled to get her into their car. When they arrived at the ER, her condition was so bad they admitted her immediately.

Hours later we were waiting on test results and Grammy lay unconscious in her hospital bed, hooked to IV fluids and monitors, her frail frame tucked beneath the sterile sheets. Her little hands lay crossed over each other and were bruised but her fingernails, painted bright red, were a defiant nod to her pluck. Mom was bed-side and had noticed strange bruises on one of Grammy’s legs that hadn’t been reported and when she showed me, I was certain they looked like someone had squeezed her leg so hard it left fingerprint-like bruises.

The nurse concurred. We couldn’t imagine how it happened. We shared a bit of what occurred at the facility where Grammy lived and the nurse was shocked. “She’s obviously a tough one!”

“She’s 103 years old…” I waited for the usual reaction of shock and wasn’t disappointed. The nurse held Grams hand for a moment and before leaving reminded us that a clinical resource manager would be by to help us navigate any issues regarding Grammy’s hospital stay.

Throughout the day my siblings and aunt came to check in on her. My aunt fussed over Grammy. “I need to fix her hair,” she asked Mom if she had a hair pick, “you know how she hates to look bad.” Mom stayed next to the bed, every now and then gently touching her mother’s shoulder or arm. They loved their mother dearly, and strangely it was in a hospital bed where it felt like she was finally safe. As the sun moved into the afternoon sky, my aunt headed home and Mom and I sat watching Grammy resting peacefully. Even though we were still waiting for her test results, this simple thing felt like such a gift.

“It’s been a heck of a day,” I let out a deep sigh and hugged Mom as she sat in her chair, “but everything is going to be better now.”

“I just wish we would have done this sooner…” A nurse interrupted her thoughts to tell her the police were at the hospital looking for her sister but didn’t give a reason. Mom let them know her sister had gone home, then called her to make sure everything was OK. My aunt had no idea why they wanted to speak to her. The doctor arrived with Grammy’s test results so they quickly got off the phone.

Things didn’t look good. The diagnosis was “acute metabolic encephalopathy, urinary tract infection, acute kidney injury, dehydration, and underweight.” In layman’s terms, she was experiencing dementia, often brought on by the condition of an untreated UTI which had also seriously affected her kidneys. She was so dehydrated that after they inserted a tube into her bladder they had to wait several hours to get any fluids, which came from the IV drip! The doctor told us it was one of the worst cases of dehydration she’d seen and that the next 24–48 hours would be critical. She doubted that Grammy’s kidneys would be able to fully recover and that meant she’d be in the hospital longer and may have long-term damage. As we told her about Grammy’s last four weeks at the nursing facility, she listened in disbelief and tears welled up in her eyes. We pointed out the leg bruises and she thought they were strange as well. Going through the chart, she told us it was painfully obvious that Gram had an untreated UTI and probably for some time given her condition. She saw the notes about blood in her urine, saying it didn’t seem critical. She wondered if it was something we thought worth pursuing if it got worse, reminding us at Grammy’s age it might be difficult to address.

I felt the need to be clear about where we stood. “Just so you know, we absolutely understand and accept that when you get to her age…and we’ve been saying this since she hit 90…that the last waltz may be near. And, per her wishes, we will not take extreme measures in the event that natural causes begin to deteriorate her condition. However, letting her die from neglect is unconscionable and something that should never happen to anyone!” The doctor agreed, her voice filled with compassion. She urged us to share what happened with the hospital’s clinical resource manager who might be able to help us figure out what’s next.

The nursing home system can be confusing to navigate. We learned that when admitted to the hospital, the hospital is required by law to only release the patient back to the nursing facility they arrived from. Grammy could be released to a different facility if a bed was available and they would take her, but, the waiting list was long for places with good reputations. Another obstacle was that she was 103. Facilities preferred to first fill beds with patients that have a bit more life expectancy. If we wanted to take her to a new facility but didn’t have one lined up and took her home during the interim, we risked undoing the complicated web of Medicaid and Medicare that made it possible to stay in a nursing home facility. Finding a new place and getting her paperwork done in a matter of days was extremely unlikely, which meant they’d send her back to the nursing facility where all this had happened.

But that wasn’t an option. Our family had all agreed on one thing — she was never going back to that place, no matter what.

Author Note: Thanks for reading Part IV. To read the conclusion of this story, please follow the link to Part V. https://saturdayeveningoutpost.medium.com/saturday-evening-outpost-51833d0f3b36