Saturday Evening Outpost

NOT DEAD YET: PART III — Do Not Resuscitate?

Grammy lay in her bed motionless, the pink comforter tucked around her little body. Her thin, white hair was matted down and a large bruise spread from her head down her face. Her little hands, clasped tightly together with nails painted an almost defiant red, were covered in bruises. It looked as if she was barely breathing.

Sometime in the late evening she woke up and had to go to the restroom. She still hadn’t managed to be comfortable wetting herself even though she now wore adult diapers. Maybe it was pride, or defiance, or even the last battle to hold on to a shred of her dignity. She struggled with using her buzzer, but the nurse's station was the room next to hers and they could usually hear her if she called out to them. This time, when she called out for assistance it did not come. She waited for 20 minutes and called out again. Then again shortly after. She called for help for about 40 minutes and then she began to cry.

— It is difficult to write this part as I am filled with such fury and profound sadness at her suffering and inability to get help. Where were these people, these so-called caregivers!? Why wasn’t there someone to help her? Were they trying to teach her a lesson? Were they trying to train her, at 102, to soil herself and not bother them? —

It was early morning before daybreak when mom called me to tell me that Grammy had fallen and was unresponsive. She had no idea how long she had been that way or how it happened. She apologized for waking me up and said she’d call me later with an update. She and her sister were heading to the nursing home.

The street that the nursing facility is on is beautiful with well-kept homes and manicured yards. Ancient, towering Maple trees lend a sense of calm to the front lawn of the facility…this place where people go to ride out their journey on the planet. As Mom and her sister pulled into the parking lot, the early light of dawn kissed the treetops and set them aglow, but there was nothing that felt calm or warm or comforting about this place. They hurried to Grammy’s room, not knowing what to expect. She was wrapped tightly in her comforter. Her breathing was shallow. She was terribly bruised. They bent to her, speaking softly and close to her ear to see if she might respond. They tried to gently wake her, finding an unbruised area to lightly touch. She did not respond. She would not open her eyes or acknowledge them in any way. Her roommate, who had been sleeping, woke to say that she had taken a bad fall in the night, but that’s all she would say. They were astounded that she hadn’t been taken to the emergency room, but the staff hadn’t even called a doctor. As they both struggled to keep their anger in check, they knew they needed to get her to the hospital. They summoned the on-duty nurse to try and understand exactly what had happened and why nothing had been done. The reason nothing had been done, apparently, was because she had a Do Not Resuscitate order. My aunt, exasperated, asked them if they actually knew what that meant because not getting help for someone who was injured had nothing to do with a DNR. Even though they were frustrated and upset and wanted more answers, their only concern at the moment was getting their mother to the emergency room.

As I lay awake in the early light of daybreak, not knowing what state my Grammy was in and imagining it was near the end, it was difficult for my thoughts to find my memories. I tried visualizing the visit where I proposed to my husband in front of her and my mom. We all sat in the little livingroom having our morning coffee together, they in their two chairs and us sitting together across from them. It was a moment of surprise and delight. They both cried with happiness. He said yes. Grammy’s reaction was remarkably poignant, humorous, and beautiful. I couldn’t imagine I could love her even more after that, but I did. I tried to remember sitting on the porch swing holding hands with her when I was seven years old and singing together. You Are My Sunshine, On a Bicycle Built for Two, and Sidewalks of New York were our favorites, and boy did we sing off-key, laughing with each other and singing even louder. I desperately wanted to be free of the encumbrances of anger that I felt from her seeming neglect, but it was difficult for my memories to carry me. Instead, the powerful gift of remembering comforting, golden imagery, and letting go, felt stolen.

My phone rang again as I was pouring my first cup of coffee. “She’s OK,” mom said with an exhausted relief in her voice.

It took me a moment to respond as I stared into my steaming coffee. “And the two of you?” I said, referring to her and her sister.

“Tired.”

“I’m sure you are. We can talk later, why don’t you get some sleep?” I knew by the sound of her voice that wouldn’t be happening.

“I’m still too mad to sleep. We both are.”

“OK, so what happened?”

“Well, your grandmother must be made of titanium.”

After the hospital ran all the usual tests, she was diagnosed with a closed head injury, facial laceration, and a urinary tract infection. As bad as her fall was, there were no broken bones and no diagnosed brain trauma. When she finally opened her eyes at the hospital, it was because my mom and aunt had gotten her one of her favorite things, Chicken McNuggets. They literally put the nuggets under her nose to smell and her eyes cracked open just a squint. Not only was a DNR not called for, but her appetite also didn’t need to be resuscitated. She ate every nugget and drank a vanilla milkshake as well!

When they returned to the nursing home with Grammy her roommate was concerned. Later, out of earshot of the staff and without being prompted, she recalled what happened that night. She had been awake the entire time and said when she heard Grammy crying, she’d had enough. She began pressing her buzzer and calling out that they needed assistance. It didn’t come. That’s when Grammy struggled to get out of bed herself and fell. Her roommate was visibly upset as she recalled that Gram had laid on the floor for several hours until help finally came. When Mom repeated to the nursing director what they learned had happened they were told Grammy’s roommate suffered from delusions. We would learn later when she was able to talk again that Grammy’s story matched her roommates. Maybe they were having shared delusions…

The nursing home’s response to this incident was to take Grammy’s walker away and confine her to a wheelchair. They clipped an alarm to her clothing so that if she attempted to get up from her chair the alarm would go off. They also had an alarm on her bed in case she got up at night. No longer able to exercise her legs she quickly lost her ability to stand on her own. At 102 she had been able to walk with her walker around the large facility for hours on end. Not any more. Now, getting her up for the bathroom, to shower, and to get dressed became more difficult. Confining her to the wheelchair, while pragmatic, felt like punishment. But, it was the easiest solution to cover their incompetence. At least that’s what it seemed like to us.

Over the course of the next year, her care seemed to get much worse. She showed constant signs of urinary tract infections and often complained of pain when she urinated. She seemed underfed and dehydrated. Every time we brought these issues up to the staff, the response was still the same — it was her age and deteriorating mental condition. We were assured she was getting all the care she needed.

Mom and her sister have always been strong and present advocates for Grammy. They would visit three to four times a week, sometimes together and sometimes separately but the times they visited were usually consistent. They decided to change up their routine and go when they weren’t usually expected by the staff. Given that Grammy’s weight and dehydration were becoming an issue they decided to visit her during lunch. When they walked into the dining room, they saw her sitting at a table with three other residents. Her head was barely above the table because she sat too low in her wheelchair. She couldn’t see her food and she was trying to eat with a knife. There was food all over her face and her clothes. It was painfully clear to them why she was getting little to eat. Once again, they took issue with the situation asking why she hadn’t been put in a regular dining chair. The answer? No one had asked them to, but they would absolutely do that for her.

A nursing home must provide assistance to those who cannot feed themselves adequately. Mom and her sister had requested that assistance but for some reason, it didn’t seem to be happening. They asked if she could be put at a shorter table so she could see what she was eating. They were told she would be. It didn’t happen. Each time they complained, they were reassured that she was eating her meals and getting plenty of liquids. But they no longer trusted what they were told so they began checking in on her during other meal times. When they arrived one day to find her alone in the empty dining hall crying in her wheelchair, her face was covered in food and she was holding her groin. When she saw her daughters it took a moment for her to recognize them and pleaded for them to take her to the restroom.

They wheeled her back to her room in a fury, taking her to the restroom, where she moaned in pain. When a nurse’s aide walked by and heard them she popped in to check on them. They immediately confronted her. “We found her crying in the dining room, holding her groin! Why was she left there!?” The aid frowned — well she was just fine and happy and wanted to stay.

“Oh, baloney!” Mom blurted out. “She was in pain and holding her groin. She probably has another urinary tract infection.” The aide looked puzzled and said that it seemed strange because at lunch she ate all her food and was talking away.

“Does she look like she ate all her food!?” My aunt shot back. “It’s all over her shirt! It’s under her nails, it’s in her hair, it’s all over her lap! Where is your compassion for godsakes!”

The aide had a blank look on her face and said she’d get her cleaned up.

“We can manage that!” My mom and aunt snapped.

“Tell the director of nursing we’ll be in to see her when we are done,” my aunt finished and they turned their attention to their mother, gently washing the food from her face and her hair. As they removed her food-stained clothing they saw bruises on her body that hadn’t been reported.

When they went to see the director of nursing, she listened attentively, nodding her head but showing little concern for the situation. She told them that Grammy had been in a terrible mood and didn’t want anyone to touch her and that she had refused to get out of bed. The bruises had probably come from her struggling and just hadn’t been reported yet. When it was suggested that she should be left in bed if that’s where she wanted to be, the nurse shrugged. When asked if the reason she may be struggling was that she was in pain, the nurse wouldn’t agree and would not offer any solution. When questioned why someone wouldn’t have noticed that she was in pain, the answer was the same — it all had to do with her age and deteriorating condition. When my aunt asked why they hadn’t tested her for a urinary tract infection given she was prone to them, the response was that they hadn’t been asked to.

“For goodness sakes! We shouldn’t have to ask you!” my aunt snapped. “Test her!”

Later that night I called Mom. It was a warm, late spring evening and I could hear that her door was open and she was using her screen door because every now and then I could hear a car go by. She was sitting in her chair reading the local paper and trying to decompress from her day. We’d be home in a few days for a graduation celebration and planned on staying for a week. We were really looking forward to seeing everyone and spending time with Grammy.

“Hey ma, you in your jammies?”

“Not yet. I just had some leftover spaghetti. What in god’s name is going on at that nursing home?” She launched right into it, recalling the entire experience, giving a damning condemnation about how the director of nursing handled them. “That woman!”

“You need to put an end to this bullshit!” I was furious after hearing the details. “Report this to the state! I can’t believe they keep giving you the run-around!”

“I feel like, because we’re just two older women, they don’t listen to us. I bet if I were a man they’d pay attention.”

Mom and her sister were two of the strongest people I knew. Both had been through emotionally crippling, incredible hardships and loss and they barely cracked. First and foremost for these two sisters were their families. Their ability to hold steady the ship in turbulent waters was remarkable. It spoke to the core of who they were — kind, generous, and capable of deep and unconditional love. And it spoke to how they were raised by their parents. If viewed through the lens of the masculine experience, their age would not make them less respected. Rather, as survivors, life-warriors, and conquerors, it would make them great and wise and honored elders. But that was not their reality.

“Yeah, you’re probably right,” I grappled for a ‘but’ except there wasn’t one. “It’s time to stop being so nice. You both are just too nice.”

“Isn’t that a shame,” she said softly. “They used to be nicer. I wonder if it’s because of the change.”

“Well, the website of the new company that bought the place says something like they are good at maximizing profits for their shareholders. It’s a nursing home, I wonder how that happens when it’s essentially a fixed revenue business?” She didn’t respond, but let out a deep sigh and was quiet. I wasn’t sure if she got what my point was. “What I’m saying is they have a fixed number of beds, those beds can only earn them a fixed amount of money, give or take people needing extra therapy, etc.”

“I know what you meant. It’s hard to see it when it’s a little bit here and a little bit there. Even if there seems like less staff, or someone says the pay isn’t good, or someone seems like they don’t know what they are doing. You notice differences but then you ask questions…”

“You took notes right?” I interjected. “All along? And pictures?”

“…and they tell you — No! It’s wonderful here, everyone is happy. There’s plenty of staff on duty. Everybody loves Grammy…” She paused. “They call her that…Grammy!” she said sarcastically, and her voice lowered and you could hear the years of frustration and anger. “They don’t deserve to call her that. If that’s the way they treat their grandmothers they should never be allowed to step into a place like that.”

“Mom…”

“They’re so fake!” she spat out. “And yes, we took notes and pictures.”

“I think it’s time to get your eldest and his wife involved,” I urged her. “Give them the authority to speak for you. They want to help and she knows what she’s talking about. They also think it’s time to report them to the state.”

“The state is not going to care! And, what if it makes it worse!?”

“Worse than what, mom? This?”

“Yes!”

Mom was rarely wrong and this time would be no exception. What happened next would be the last issue Grammy would ever have at this facility — and despite what some in the facility suggested, morphine and hospice would not be the final solution for her.

Author Note: Thanks for reading Not Dead Yet—Part III. For Part IV, please click the link. https://saturdayeveningoutpost.medium.com/saturday-evening-outpost-ba62e9b6f9a6