The Final Journey Part 6 (The Long Goodbye)

Saturday October 8

The walk through the front door, into the elevator, and down the hall to room 141 was particularly long this Saturday morning. I wanted to get there quickly, but at the same time, was terrified for what I was going to find. I was still reeling from the anger over the hospital keeping Gram waiting over twelve hours for an ambulance to bring her back and then releasing her without calling me. My emotions were piqued.

Two women staff members saw me as I walked into Gram’s room. Gram was lying in her bed in the same fetal position she was the night before at the hospital. Her eyes were still half open and pasty. Her breathing was deep and heavy. She was wearing only a hospital gown and a diaper, which was exposed because the blankets were partially pulled off.  Did they just toss her there? As I moved to cover her, the two staff members walked in and quickly took over. I didn’t know these two women well, but they sure knew Gram. They were night staff, I surmised. They took control of the situation with a sweet gentleness and conviction that touched me to tears. I stepped out of their way, “Let’s get her into her PJ’s,” one said, more to the other than to me, as they frantically and dutifully positioned Gram to change her. 
“Gramma isn’t Gramma without her PJ’s,” the other said. I left the room to allow them privacy. 
As I walked out, I heard one of them say, “We can’t have her like this, Gramma runs this place.” Even teary-eyed, I couldn’t help but to chuckle under my breath.

Shortly after the two women left the room, the ManorCare nurse came to check on Gram and took her vitals. She asked if I needed anything. “No, thank you.” I said. Gram looked so much warmer and comfortable once she was in her PJ’s. Those women were right; she needed to be in those PJ’s.

Michelle came shortly after I arrived and we sat with Gram throughout the early morning. We reminisced. We laughed. We sat quietly at times. We were sad and there were moments of tears. There was disbelief – lots of disbelief – this was all happening so quickly. But this time with Michelle and Gram was special to me. Through these years of Gram’s illness, it had been the three of us. So it was appropriate that it was the three of us now.

As the morning went on, Gram became increasingly restless. I grew impatient waiting for the hospice nurse, Tonya, because, as brave as I was trying to be, the restlessness was difficult to watch. I felt helpless. The random arm movements weren’t as bad as the grasping and rubbing of her head she kept doing with one or both hands. It was similar to what one might do when suffering from a severe migraine. I didn’t want to think she was in pain – I couldn’t bear it. I’ve experienced migraines and I know that pain well. I didn’t want to think it.

Gram was repeatedly grasping the edge of the blanket, too. As I watched her do this, I flashed back to childhood when I used to do a similar thing. I got comfort from the nylon ribbon they used to put on the edge of blankets - its cool softness was soothing and felt good between my fingers, on my face, and on the tops of my feet. I would bunch it up in my hands and rub it against my face. I would position my feet in such a way that that nylon would slide across the tops of them. It calmed me and at the same time distracted me from the bad thoughts. Now, I was hoping it was doing the same for Gram.

I knew once Tonya arrived, she would get Gram started on Morphine and Ativan. The Ativan would help with the restlessness and the Morphine with pain, if she was having pain. When she did finally arrive around 11:00 am, shortly after Michelle left, she quickly ordered both medications.

Within a couple of hours, the meds arrived. Once they did, though, someone dropped the bottle of Ativan and it broke and spilled all over the floor. The original pharmacy didn’t have any more so they had to seek out another one. In the meantime, they began administering the Morphine, but it only calmed Gram slightly - mainly because it put her to sleep. It was something, though, while we waited for the Ativan, and I was thankful for it.

In the meantime, Mom and my brother, Bill, and sister, Heather, and her boys, Kody and Zach, arrived around noon right after Michelle left. Jude came later, too. I was happy to see Bill come. Bill is my oldest brother and losing Gram was going to be at least as difficult for him as it was for me, probably more. Over the years, Bill couldn’t seem to handle Gram’s disease and slow decline very well, so he didn’t come around much. Over the last few years, though, he had bravely begun to come for our holiday gatherings and I was happy for that. Bill was Gram’s real favorite, even though most assume I was. I had no issues with their relationship, at least since I became an adult. They had a very special bond. And now, more than ever, Bill needed his time with Gram - his chance to say good-bye. Gram did, too. She always worried about Bill and loved him deeply.

The Ativan finally arrived around 3 p.m,. The nurse began administering it immediately, but the effect was not immediate. I expected it would take a couple doses to establish the proper amount and get it built up in Gram’s system before we’d see the results.

Throughout the day, most of the entire family would make their way to see Gram. Jude, Mom, Bill, Heather, Kody, and Zach, came early. Later, my sister Michelle, her husband, Paul, and their kids, Andrew and Aubrey, would also come. Additionally, there was a steady stream of staff and other residents who stopped by Gram’s room throughout the day to express well wishes, say goodbye, and offer a prayer, a story, or even a gift. Cynthia, a resident, offered a page from a coloring book she colored specifically for Gram. It was accompanied by a letter she wrote. “I heard you’re getting ready to break my heart,” the letter started out. “…Believe me they’ll be a lot of others, too. Everyone loves you so much. Like the beautiful blue skies open up to you. I love you honey. You earned your peace and are saved by grace.” Cynthia cried when we told her of Gram’s condition. Kevin, another resident, came by and asked the family to join as he said prayer for Gram and for us.

As each shift ended, staff members finishing the shift came to say goodbye to Gram. They didn’t know if she’d still be there for their next shift. Some of those moments were more poignant than others, such as when Chris, the tall, young aide, who always took such good care of Gram, came in, got down on his knees beside her bed, lowered his head next to hers, kissed her, and said, “I love you Grammy.” I tried to hold back the tears, but could not. How nice that Gram was surrounded by such love.

As I sat at her bedside throughout the day, there were times that Gram would reach for and grab my hand, pull it toward her, run her hand up my forearm and back down, and then squeeze my hand. Then she’d push it away and repeat the process. Once again I was taken back to my childhood, to her comforting me during the nightmares I used to have. I hoped, now, I was doing for her what she did for me back then. She provided me great comfort during those scary times as a kid.

Heather, Mom, Bill, and the boys left around 5:30 p.m.. Gram hadn’t opened her eyes at all Saturday, but when Bill leaned over to say good-bye, she opened them. She only did it for him and he spoke of it as he walked out, “I think she was trying to say something to me.” Perhaps she wanted to see his face one last time. She didn’t see him often. Perhaps she was saying, "I love you."  

Jude stayed with me well into the evening. She was a huge support for me and I was glad she stayed. Michelle came back minutes after Mom and Heather left. Paul, Aubrey, and Andrew came later. Gram was still somewhat restless when they arrived and Aubrey and Andrew were concerned. I didn’t tell them what happened to delay the Ativan, as I didn’t want to further upset them. By now, the Ativan had helped some, but it hadn’t reached its full effect. Aubrey and Andrew also expressed concerns about Gram’s breathing. It appeared belabored. Her mouth was wide open, as it always was when she slept, but today, that aided in the appearance of a struggle. Tonya told me earlier that she was not struggling to breathe but it was typical for families to think otherwise. Nevertheless, we expressed our concerns to the ManorCare nurse, who, without hesitation, brought oxygen. Tonya may have been right. It didn’t seem to ease Gram’s breathing at all. We felt better though.

Again, we sat and reminisced. We told funny stories. We sat quietly. We wondered. Again, there was disbelief. I mean, just four days earlier, she was still wheeling around. She had just said to me Wednesday night, “I have to get the hell out of here.” Although her words were disjointed Wednesday, she still had some of that characteristic spunk that endeared her to so many. But now, she lay lifeless. None of us knew what was going on in her head. I only hoped it was peaceful preparation for her transition. I hoped that those she loved that had gone before her were reaching out to assist with her journey.

I learned that evening what NPO meant and it was a harsh lesson in reality. I was asked about Gram being NPO. I Googled it: NPO is short for the Latin, nil per os, which means ‘nothing through the mouth.’ I knew Gram hadn’t urinated or had a bowel movement in at least 24 hours and I knew she wouldn’t and now, couldn’t, eat, but hearing NPO and learning what it meant made the finality of things painfully real – this was the end.

I also experienced first-hand what I had hoped I never would, but nevertheless had read about. That is, how often Alzheimer’s patients die of starvation because they lose the ability to swallow. I believe it’s called Dysphagia. Gram was starving to death as we watched and she had been over the last months – slowly, but definitely. But today, as the nurse, Ang came to administer the meds from the oral syringes, I understood well what losing the ability to swallow meant in the final stages of this disease. And it was horrifying to watch. The medication was to be placed under Gram’s tongue and absorbed there. Naturally, though, some drops would dribble down her throat, which by now was so dry and brown that the tissue and dried, pasty saliva looked like stalactites hanging from a dark cave. When some of the medication hit Gram’s throat, she would immediately go into a spasm - mouth wide open, shoulders tensing, head bobbing forward, in a clear struggle to swallow. It looked as if it was purely reflexive and without all the muscles actually working to push those few drops down. This seemingly automatic, but not actually functioning, attempt by her body only caused her to gag and let out strained and raspy, weak, shrieking noises that originated from deep in the back of her throat. I’d place my hand on her back and lift her to an upright sitting position as I rubbed her back and neck in an effort to help. As I looked over to Ang who was sitting across the bed from me, I could see the big tears in her eyes that spoke to the helplessness that we were both feeling at that moment. It would only end once the drops were able to finally pass beyond Gram’s throat on their own. By Sunday, these moments had stopped, thankfully. They were the most difficult part of the whole dying process to watch.

Later in the evening, after Jude left and when Michelle and her family left, I left too. I had to go home and take care of my dogs. Gram was resting more comfortably.

By the time I returned later that night, the meds had fully kicked in and Gram was resting peacefully. It was probably after 9 p.m. when I walked into Gram’s room. I found Stefanie and Monica, two of Gram’s favorite aides, sitting with her. They had cleaned her up and finally got her positioned from fetal to lying on her back. Her arms were no longer moving; rather they were resting over the blanket that was neatly folded and covered her to her waist. She looked peaceful. Her mouth, of course, was wide open.

Stefanie and Monica have always loved and taken such good care of Gram, so those quiet moments of them sitting with her when I arrived, were some of the most poignant that I will remember.  The room was dimly lit, which provided a softness and solemnness to the experience.  They were sitting quietly. And when they spoke, they spoke softly as if not to wake Gram. “This place won’t be the same without her,” Monica said.
“No, it won’t, “added Stefanie. I was profoundly touched.

Tonya came back, too, to check on Gram. Tonya explained what Gram had been experiencing earlier. “It’s called terminal restlessness,” she said, describing the restlessness – the flailing of the arms and rubbing of her head that Gram had been doing incessantly until the medications fully kicked in. “It doesn’t mean anything,” she went on, “They’re just random movements that people experience when they are dying.” She reassured me again that Gram was not struggling to breath or having pain. It was probably due to delirium from the dehydration and severe anemia she was experiencing along with her organs shutting down. Tonya looked at the oxygen concentrator next to Gram’s bed. “Oxygen is for the families.”

Friday was a day of gut-wrenching day of decision-making. Saturday was a day of settling and acceptance, peacefulness, and good-byes. By the end of Saturday, Gram was finally resting and peaceful. Hospice was engaged and providing comfort measures. Sunday would be about waiting.