By now it was early September and Phil was noticeably weaker. His voice was weak and breathy. I asked for a chest X-ray and a lung function test. When the results came back our doctor called and said we needed to see a pulmonologist. I made a decision to go to Emory. In Late September we saw a pulmonologist at Emory. She said the chest X-ray was abnormal and she was ordering a cat scan and, because of Phil’s past cancer, she ordered a cat scan of the abdomen and pelvic areas, too. She also mentioned that she noticed a difference in his arm strength and leg strength and wanted to bring in a neuromuscular specialist. We went home afraid that the cancer had returned.
The next day Phil had an attack where he couldn’t breathe. We raced to the Emergency Room. He settled down at the ER and they decided to go ahead with the cat scans that had been ordered. I braced myself for the results. But the doctor came in and said that there was nothing found. The doctor told us, “Keep searching. These tests can’t show everything that’s going on.” Phil was released and we went home.
Five days later we saw Phil’s cardiologist who said that he didn’t believe his heart was the issue. He encouraged us to pursue the neuromuscular aspect. By this time Phil was using a walker to move around in the houses and his head was always hanging down. He had begun drooling.
That afternoon Phil had another breathing attack and we raced back to the Emergency Room. This time lab work showed his sodium levels were very low. The ER doctor recommended that he be taken to Gainesville, Georgia to the cardiac hospital so his heart could be monitored closely while bringing the sodium levels up.
Phil stayed in the hospital a couple of days. Meanwhile Emory called regarding an appointment with their neuromuscular expert, Dr. Jonathan Glass. But Dr. Glass had no openings until late November. I begged. I pleaded. I was desperate. Phil was going downhill so fast and he needed help. He was now using a wheelchair to get around. They promised to call if there was an opening sooner.
On Sunday evening my good friend (our pastor’s wife) brought dinner to eat with us.
Phil took a bite and choked. It was horrible. Teresa jumped up and started the Heimlech Maneuver but it wasn’t helping. I called 9-1-1 and an ambulance was dispatched. As the ambulance arrived, it finally cleared his throat. Phil was ok but we were left shaken. Phil whispered to Teresa, “I hope God will allow me to teach the Bible again. It’s all I ask.” His lack of voice was still his primary concern.
The following Monday, Emory called again. They had a cancellation which meant an opening the very next day! On Tuesday we drove to Emory. Dr. Glass walked in with a small group of professionals. They poked. They prodded. They asked lots of questions. After about an hour, Dr. Glass said, “I have bad news. You have Lou Gehrig’s disease. It’s fatal and there is no treatment. I don’t know why you have it. I wish I did.” We sat there completely numb. He asked Phil if he had any questions. Phil said no. He asked me if I had any questions. I wanted to scream, “Yes! I have a million questions!” But I didn’t want to ask questions for which Phil might not be ready to hear the answers. I just shook my head no. And my tears began to fall.
We spent a couple more hours at Emory as they started connecting us with resource people to help us cope with this devastating diagnosis.
The one resource they were most encouraging about pursuing was the VA. Phil had served on a submarine in Vietnam. They had traveled up waterways inside Vietnam snorkeling and surfacing to drop off marines. Phil was most likely exposed to Agent Orange. Anyway, veterans who have seen active service are twice as likely to get ALS (Lou Gehrig’s Dusease) as the general population. Therefore, the VA recognizes ALS as service connected. Phil would qualify for 100% disability compensation along with other things that would help us—-such as a grant to adapt our home for his needs. We would need an elevator installed and a generator in case of power outages.
On the way home I asked Phil again if he had any questions. He whispered, “I don’t want you to suffer.” He had just been kicked in the gut with the worst possible diagnosis a person could receive and he was worried about me. I will never forget that.
On Wednesday morning after we got back home I threw myself into completing the mounds of paperwork required by the VA. My goal was to make sure we could keep Phil at home and I was driven to make that happen. Time was ticking. By now Phil could only whisper a couple of words at a time. He was getting weaker by the hour.
This hospital stay had taken its toll on Phil. He was barely vocal, extremely weak, and seemed mentally disengaged. Could it be hospital-induced dementia? He wanted to go home and I wanted him home so he could bounce back. I texted my friend to let her know we were going home. I forgot it was Sunday morning and she was in church. But she quietly gathered three men and two of their wives who were in the medical field to leave church and come help get Phil up the stairs to his favorite chair. As they stood to leave church our pastor instinctively knew it involved Phil so he stopped in the middle of his sermon to have church wide prayer for Phil.
When I drove up to the house there was a team of people waiting to help. They helped Phil out of the car and into a dining room chair they had brought down. The men worked together to lift Phil in the chair and carry him up the stairs. After about an hour they left, but they came back later that night to make sure I could get Phil to bed.
That night was horribly rough. I rested with my hand on Phil so I could feel when he sat up on the edge of the bed to breathe. Each time I came around and sat beside him rubbing his back until he was ready to try to lie down again. Phil was now completely nonverbal, but he plopped his hand heavily on my leg and, with jerky movements, tried to console me by rubbing my leg. It was one of our final tender moments.
The next morning I was exhausted as Phil and I struggled together to get him to his recliner chair in the living room. He refused to eat or drink anything. I crushed his medication and placed it in a little applesauce. He tried to take it but choked. I felt totally defeated and overwhelmed as I thought of all I needed to accomplish through the mental fog of exhaustion. Suddenly I heard the ding of my phone. It was a message from Hannah—one of the young women who had helped us the day before. “Did you sleep?” she asked. “Not much,” I replied. Hannah was quick to answer, “I’m off work today so how about I come over and sit with Phil while you catch up on sleep?” I felt a bit of the weight lift off my shoulders as I thanked her. Five minutes later the phone rang. It was Kenton, a member of Phil’s bible study class. “How’s that VA paperwork coming?” He asked. “I hope to work on it later today, Kenton,” I replied. Kenton answered, “I’m coming over in five minutes to pick up what you’ve done. I’ll take it to the VA office in Franklin and have them help me finish it for you.” And I felt more weight fall from my shoulders. The phone rang again and it was Teresa, my pastor’s wife. “Angelica and I were talking and we’ve decided to come every week and clean your house so you can devote your time to Phil. Can we come later today?” As I hung up the phone I looked up and said, ”I know this is You, God. Thank you for meeting every need I have.”
I turned my attention to Phil once again. His breathing was labored. He was nonverbal. He was slumped forward and unresponsive to me. “This just doesn’t seem right,” I thought. I sent a message to his doctor via Emory’s patient portal. Within fifteen minutes they called. “Take him to the emergency room and have the doctor call Dr. Glass immediately,” the nurse said. I did the only thing I knew to do. I called my pastor, Mark. “I will have some guys there in five minutes,” he said. And they were here. They dropped everything at work to race to our aid. They took Phil down as they had brought him up the day before— carrying him as he sat In a dining room chair. They loaded him in the car and we took off.
I ran into the Emergency Room to get help in getting Phil inside. Once again I received another confirmation that God was with us when I saw the nurse was Jessica, another member of our church family who had been so good to Phil. As Jessica helped get Phil into a bed and propped him up with pillows because she knew he couldn’t breathe when laying down flat, in came Anna Claire to check on us. Anna Claire is another member of our church family and is a nurse at the hospital. She pulled up a chair to sit with me as we watched Phil. Jessica hooked up Phil to the equipment and alarms started sounding indicating his oxygen levels were low. That was new...usually his oxygen levels registered fine. It was his ventilation issues which caused problems. They gave him oxygen and the number started climbing, but when they tried to wean him off, it would plummet again. His breathing seemed jerky and he was not responding to any of us. Jessica stood by his bed and stroked his head. Anna Claire leaned over and whispered to me, “This doesn’t look good at all.” My pastor soon arrived to be with us.
The doctor ordered an arterial gases test. I had read about that test. It was painful as they would draw blood from an artery. Phil didn’t flinch. They took the blood to check for gases building up in his body which was possible if he wasn’t ventilating properly. After a bit the doctor came in. “He motioned at my pastor and asked if he could speak in front of him. “Please do,” I replied. “We have the results of the test. He’s not going to survive.” I struggled to comprehend what he had just told me. Not survive? Carbon dioxide and other gases his body needed to expel were instead building up in his bloodstream. The doctor said that I needed to make a decision if we would have have him put on a ventilator. It was the only way to keep him alive. I told him I needed to speak to my children and he said I had time to speak with them before making a decision. I called my daughter and she was understandably upset but she trusted whatever decision I made. I called my son and he wasn’t sure if refusing the ventilator was the right thing to do. “Have you talked to his doctor at Emory, Mama? What if it might be a temporary setback?” I asked the ER doctor to help me reach Dr. Glass. He came back with Dr. Glass’s personal cell number for me. I called and he immediately answered. “I’ve looked at the lab reports and talked with the doctor there,” he said, “I have no doubt that it is end stage ALS. You can decide to put him on a ventilator and he may continue to live. It will be a permanent decision and the ALS will progress.” I called my son and relayed what the doctor said but he was still unsure. “Phillip, here’s his number. Call him and talk to him. Ask any question you want to ask. This has to be the right decision for you, too,” I said. Phillip called him and spoke at length with him. When he finally called me back, he said, “I’m in the car and on my way. Please don’t let them do anything that might hasten his death. I want to say goodbye.” I told the doctor our decision.
Anna Claire told me that they could move him to a hospice room in the hospital where hospice could care for him and it would have an adjoining bedroom for me and other family members. “It may be days or weeks or months,” she said. At that time, Jessica called me into Phil’s room. “It will be any moment,” she said. “His heart is slowing and his breathing is, too. You can talk with him now and say your goodbyes.” I fell to my knees beside his bed and held his hand. I thanked him for the life we built together. I told him how much I loved him. “I’ll see you in the morning, my love.”...those were the last words I spoke to him. And my life’s partner of 43 years was gone. Six days after his diagnosis, he was gone. Unbelievable!
Remember Phil’s request to teach the Bible again? Looking back I can say that Phil taught the Bible all the way until God took him home. He lived by faith and trusted God every step of the way. Sometimes actions truly speak louder than words.