The End

Sarah looked at her cell phone as if it were going to spit out her answers. Her stomach was churning, and the anxiety was hitting in waves. "Breath Sarah, just breath!" She whispered to herself. She forced herself to slowly inhale and exhale. It was 11:00 a.m. and she was not prepared for this to happen today.

The call confirmed what she knew for months. Chucks body was shutting down. The ALS sabotaging his muscles for years was going to have its final victory and soon. The nursing home administrator where Chuck lived for the last few years called to say both of his ventilators had malfunctioned, so Chuck had been transferred via ambulance to the hospital across the street. Sarah knew Chuck was going into respiratory failure. The facility administrator knew too and had been hinting at this for weeks. In truth Sarah had seen it for months. His body was puffy from water retention due to his organs shutting down from the lack of oxygen as the muscles of his respiratory system weakened and atrophied.

Sarah took one final deep breath and called her boss. She briefly explained the situation and hung up. She then called her sister to say she had to drop off Bobby, her 10-year-old son. Sarah packed a backpack and jumped in the car with Bobby. Sarah and Bobby laughed and joked all the way to her sister Sherry’s home. Sarah did not want Bobby to worry. After settling Bobby in and assuring him she would be back soon, she jumped in the car for the two-and-a-half-hour journey to Portland to be with Chuck. Sarah called the other 6 kids and Chuck's brothers on the way. Chuck had 4 kids when they met, and Sarah had two. She and Chuck had Bobby for a total of 7 kids. The six older kids were in college or married and they all lived out of state. Sarah kept it together and assured the kids on the phone she would call with updates.

When Sarah arrived at the hospital and gave her name. She was ushered into Chuck’s room in the ER. Chuck was connected to a hospital vent, and he was struggling so hard to breathe his eyes were rolled back in his head. His oxygen level was at 80% even with the vent set as high as it could go.

Sarah swallowed back the fear and panic once again and walked to the side of his bed. She put his hand in hers and assured him she was there. He struggled and brought his eyes down and looked at her. She knew him so well and she could see the begging in his eyes, and she knew he was ready for the plan. Her heart shattered into a million pieces and anxiety threatened to overtake her. She was terrified and devastated, but she knew she could not show it.

She swallowed the tears and asked Chuck if he wanted her to implement their plan. He forcefully blinked twice, yes, and then his eyes rolled back in his head again. She squeezed his hand and said, “OK. I have to go make arrangements; I will be right back." She allowed a single tear to roll down her cheek as she released his hand.

Sarah did not have far to go as the doctor entered the room as she reached the door. She quickly wiped away the tear and introduced herself. The doctor began at once explaining Chuck was in full respiratory failure. His words felt so clinical and lacked empathy. "That's a strange thought" Sarah reckoned within herself. As the doctor began explaining Chucks options Sarah interrupted him and informed him, she understood exactly what they were facing. She explained the planning her and Chuck had done long before he lost his ability to speak or move. She told him Chuck wanted to be removed from life support. She heard an echo in her head as she spoke, and she realized she did not recognize her own voice. It was like a robot had taken over.

The doctor blinked rapidly at her, and Sarah was not sure if he was shocked to be interrupted or shocked at the matter-of-fact explanation she gave. For all their training, doctors were not good at facing terminal illness with family members Sarah thought. When he finally spoke, he cleared his throat and said, "Well, if that is the decision I will have him admitted to a private room and we will follow his wishes!" The doctor reverted into his clinical voice and nodded at Sarah then he walked out. Sarah was grateful this did not have to happen in the ER. "Thank you, God," she fervently whispered as she exited the room to call her family with the update. She hung up the phone after consoling the children and assuring them Chuck was not in pain. She stayed in the private cubby she used to make the calls. She allowed the tears. Just for a minute she gave into the fear, anger, and devastation. After a moment Sarah forced herself to take a deep breath and said, "It is what is." This had been her mantra since the diagnosis. As she watched Chuck lose fine motor skills, the ability to walk, talk, eat, and even breathe on his own she told herself, "It is what it is!" Every time fear and loss punched her in the stomach. Every time she changed his sheets and cleaned him up. Every time she cleaned his canula and gave him tube feedings. Yes, even when she was forced to admit she could not take care of him anymore and had to place him in the nursing home. When she had to file bankruptcy and foreclosure because every dime was liquidated, refinanced, and used for his care, "It is what it is!" she said repeatedly. Not a day went by in years that she had not heard herself make that statement multiple times.

When Sarah arrived back at the room, she was told Chuck was going to be moved up to the fifth floor. Sarah rode the elevator holding his hand. He had not been able to pull his eyes back down since her arrival, but she kept whispering reassuring words in his ears and explained where they were going.

As they entered the room Sarah was introduced to the RN taking care of Chuck. She asked Sarah if she would mind waiting in the hallway while they got Chuck settled in and comfortable. Sarah agreed and kissed his forehead. She explained what was happening and that she would be right outside the door for a few minutes and then she would be back.

After Chuck was settled the nurse came into the hallway and asked Sarah if they could talk for a minute. Sarah inhaled sharply and said, “yes”. The nurse asked Sarah how she was doing. The look in her eyes told Sarah she knew this battle. After Sarah assured her she was doing OK the nurse explained she would give Chuck two medications that would relax him and relieve any discomfort. Then in a few minutes she would disconnect his vent. “Will he be in pain?” Sarah managed to choke out half whisper and half cry. “No honey, he will not be in any pain.” Then she continued “After a few minutes his breathing will slow and then stop. This is a very peaceful process.” She reassured Sarah holding her hand and looking her in the eyes. Sarah was not sure she could hold it together. She pulled her hand away and said, “OK, I am ready when you are.”

The two woman entered Chucks room which already had 5 additional medical staff present. It felt so overwhelming, and every part of Sarah wanted to run out of that room screaming at the top of her lungs but outwardly she turned her attention to Chuck and held his hand. She explained to him they were going to put the plan in motion. Chuck managed to pull his eyes down and look at her one last time. Sarah could see the relief. She could also see his love for her. She almost broke but she smiled and said, “I love you too!” Then Chucks eyes rolled back into the back of his head as his struggle continued. The RN sat down with a syringe, and she introduced herself to Chuck. She explained everything she was doing and what he would feel as the medication took effect. Sarah was grateful she talked directly to Chuck. Most people spoke to her like he could not understand. After she inserted the second medication into Chucks IV, they waited a few minutes. Sarah could see Chucks body relaxing. The nurse looked at Sarah and said, “OK, I am going to disconnect your vent now.” Continuing to speak directly to Chuck. Sarah took a deep breath as she watched the tube that had gifted them several extra years be disconnected from Chuck’s throat.” The panic and fear erupted inside her and she kept thinking, “NO he won’t be able to breath!” but outside she pressed her forehead onto his and told him she loved him. She assured him she would take care of the kids and make sure they were ok. She assured him Bobby would know Daddy did not leave on purpose and daddy would always love him. She stayed there feeling the exhaled air from his tube gently brushing her cheek until she realized the air was slowing down. She lifted her head and watched Chuck’s eyes come down. She smiled almost excited and for a fraction of a second she thought everything was going to be OK. She blurted, “There you are!” and squeezed his hand. But he wasn't looking at her. His eyes were still and staring straight ahead. She saw the light go out of his eyes and she saw him leave. She did not know how she knew he was gone because his eyes were still opened, but Sarah knew she saw him go. She frantically brought her head ahead around and looked at the nurse with the question in her eyes. The nurse gently said, “Let me check before you say anything because the hearing is the last to go.” She could see the war going on inside Sarah’s soul. The battle with Sarah's emotions was slowly being lost and she felt like she was vibrating in the fight for control. The nurse listened with the Stethoscope. She gently touched Sarah's hand and said, “he’s gone.” Sarah looked at her and stood up. She looked down at Chuck. He was so peaceful. She had not seen peace on his face in years. Then she was suddenly hit with a tidal wave of emotion. She grabbed the side of the bedrail and fell to her knees, holding the rail not realizing she was slightly elevated off the floor. She hung her head and began to sob and cry. She felt like her whole inside was being torn out of her body and the pain just kept coming wave after wave. She was not sure how long she had been crying, her throat felt hoarse and dry. She was exhausted. She let go of the side of the rail and collapsed on her knees to the floor. She pushed herself up and realized she was alone in the room.

Sarah kissed Chuck one final time and walked out the door. She realized she did not feel anything. She was numb and she was ok with that. The nurse came to her and handed her a bag of Chuck’s things sent over from the facility. She could hear herself saying Thank you. “Thank you for making that better. I knew it was going to be hard, but you made it more comfortable than I thought it would be if that makes sense.” Sarah said in a hollow voice. The nurse gave a compassionate smile and hug and offered her condolences. Sarah grabbed the bag and headed for the waiting area. “What am I waiting for?” she asked herself.

For the first time she realized she was not going back to that room. She was not going back to the nursing facility. She had nowhere to go but home, which was two and a half hours away and it was 3:00 a.m. Sarah knew she had been up since 6:00 a.m. the previous day and suddenly exhaustion hit again, and she sat on the couch.

She pulled out her phone and called Joe, Chuck’s oldest son. She told him it was over and Dad was in heaven. She asked him if he could let the other kids know. Sarah did not think she had the strength to keep repeating it over and over. She got up with heavy legs and headed for the door. Saying over and over, “it is what it is.” She did not know where she was going but she knew she had to put one foot in front of the other to get there. “