Mom was diagnosed with non small cell lung cancer on June 6, 2000. She went into the hospital on June 5 because she had become weak and did not feel like she could move anymore. At the hospital she was diagnosed with bleeding ulcers. She received two units of blood.
The next day her doctor came into the room and asked me to please sit down, and told us during some tests he had ordered, he had found a tumor in her right lung, upper lobe. He then scheduled a biopsy going through her back, to determine if the tumor was malignant or not. It was. She was released from the hospital six days later with an appointment in early July to see a thoracic surgeon. During this time mom debated back and forth as to whether she wanted this surgery or not. I kept insisting that she have the operation. Yes, it was going to be painful, but the tumor was in a good location and had not spread (to their knowledge). So, of course I wanted her to have the operation. Mom was very fearful of the pain, but agreed.
She weighed 90 pounds and her eating was at a minimum. My job was to push as many calories as I could into her. I would make at least three trips to her home every day, pushing ensure, vitamins, candy, and making sure she had anything she needed.
One night she called me at home, saying she felt funny. Would I come and sit with her? When I got there she was sweaty, weak, and dizzy. I called an ambulance. She was suffering a silent heart attack. She spent another week in the hospital. Of course now her operation was canceled. She would never survive it.
By this time mom had grown tired and decided she would seek no further treatment for the cancer. She asked me to just take her home and never send her back to the hospital again. That is what I did.
Mom went down hill fast after that. She rarely moved from her couch, and the pain started becoming more intense. She ate very little. She started loosing the use of her legs. After trying a couple different pain medications the doctor decided it was time to start morphine. Her last doctor appointment I had to bring her in a wheel chair, and my brother had to carry her from the car to the chair. The doctor said he thought it was time for hospice. We agreed.
By that time bedsores had set in. At that time mom was not confined to the bed, so I had no idea this was even possible. By the time they were discovered, they were open and weeping huge sores on her buttocks. This was the worse thing I had ever seen, and it continued to get worse as she got sicker. To this day I wish I had known more about this condition, as I think the sores were as painful to her as the cancer. This was the end of July.
When Hospice came in they ordered a hospital bed, commode, and all the things that would make mom more comfortable. I was so relieved at this point, to have them helping us. Mom could no longer be left alone. Between my brother Dave, and his wife Terri, and myself, we took turns spending the nights with her. I spent the days with her. Mom was still pretty coherent, and we spent many days and nights talking with her and laughing, in between her sleeping. Someone was with her constantly. I think mom really enjoyed having her family always so close.
Her morphine was increased, and so was her sleeping. She ate nothing to speak of, and her drinking was at a minimum. We did not push the issue. The body knows how to die, we were told. She was in her last two weeks of life. She started having strange dreams that I thought were morphine induced. She would wake up confused as to what time of the day it was or what we were doing there. After much reading, I have come to realize that this was the times when she started doing what I call her dying work. Seeing her life in the past, and settling old issues. She started having conversations with people that she said were standing around her bed. I did not question this. In fact there were times when I tried to engage in these conversations with her. She would ask me who they were, and I would tell her to ask them. She would, and would then leave me out of the conversation. This truly felt like a magical time to me, as I believe that these people were there to make her transition from this life to the next a little easier.
Mom seemed to develop a special connection to my brother Dave. Sometimes she would wake from a sleep and tell us things about Dave that he would later find out to be true! An example was that at the time he was trying to sell his house. She awoke one night after he had left, and told us someone was interested in his house and there was a note on his door about it. When he returned the next day, he announced that there was a note from the Realtor that someone had made an offer. He had no idea mom had told us of an interest in his house. Another time Dave had left the home a little upset. After he had left, mom awoke and said that Dave was angry, driving his truck, and cursing. I called Dave later, and he confirmed Mom's vision. Dave has a mild temper and it is was not the norm for him to be so angry. Somehow, someway, mom was able to "see" occurrences. It was truly amazing.
Slowly moms breathing became more irregular. When she would sleep, she would pause in her breathing for up to 30 seconds, and then start again. This was terrifying to watch. But as hospice explained to us, this was not uncomfortable for her, only for us to watch. We were nearing the end.
On Sunday, all of mom's grandchildren came over to see her, and spend time with her. This day she was very alert. She was talking, laughing, joking. Making sure every grandchild knew how much she loved them. On Monday my daughter decided to spend the night with me at mom's. Again, mom was very alert, and had spent the day with very little sleep. Talking and talking all day with Terri, Dave and myself. That night, mom asked my daughter for a piece of chocolate candy. This delighted my daughter as mom had such a sweet tooth and had asked for nothing to eat for so long. Well, that chocolate turned into the biggest mess on my momís face you have ever seen! I returned to the room, and found them laughing and giggling, and trying to clean her up. The candy had nuts in it, which immediately got stuck in her dentures. I spent the next hour trying to clean her up. At first I was a little put out. But then I looked in their faces and knew it was time for me to lighten up. They were both so happy, like two kids that had gotten into something they were not supposed to. This was the last thing my mom ever ate.
Tuesday Mom awoke more disorientated. Her sleeping became more restless. She was somewhat agitated. She seemed to be detaching from us. Her mood at times became more fidgety. She seemed to be struggling. She started sleeping more.
Wednesday night I spent alone with her. Her breathing was more shallow, and became more irregular. I became alarmed and called hospice in the middle of the night. After explaining what seemed to be happening, they reassured me that mom was not going to die that night. Everything that was happening was completely normal for the process she was going through. It was a very long night.
Thursday the hospice nurse and social worker showed up and the nurse put a catheter in, as I could no longer get her out of bed. The social worker talked to us about the signs of dying and what we could expect. Mom had started to run a fever. This was also normal for the last days of dying. This day, she talked very little. She slept a lot. I remember mom asking Terri why she was tapping her on the shoulder. Of course, Terri was not. When I left to go home that night, I kissed her good-bye, told her I loved her and would see her in the morning.
Friday morning when I got there mom was awake, but very tired, I talked only a couple of minutes to her and she fell back asleep. When she awoke, I could see something was definitely wrong. Her breathing was fast, and her eyes would open and close with each breath. Terri called Dave. My brother Dennis came. We called hospice and the nurse and her CNA came. Mom's temp. was 108. My brother Doug came. The nurse told us that she would pass by that afternoon. She showed us how to dissolve her morphine pill in a small amount of water, and give it to her in a syringe under her tongue. This was to make sure that mom stayed comfortable, and would not feel the lack of oxygen that her body was experiencing.
At one point Mom's tongue became stuck to the roof of her mouth, due to dryness. The nurse showed us how to swab her lips and mouth with glycerin to keep it moist. Her eyes slowly closed. We talked with her, we held her hand, we stroked her hair and forehead. My daughter came and told her what a good grandma she had been, and how much she loved her, and a tear rolled down her cheek. I hummed her favorite song, the one she sang to me as a child and to my children and grandchildren, " You are my sunshine, my only sunshine". Another tear rolled down her cheek. We told her it was okay to go, that she was tired and we knew that. We would be okay too. Her breathing became shallower and shallower. The nurse froze sheets in the freezer to cover her with, as her fever would not come down.
Finally her breathing became such as we knew no air was getting through. The hospice people called this fish out of water breathing. It is just the gesture of breathing, nothing more. One last breath and she was gone.
Her temperature never went down from 108. The doctor later said that they suspected septicemia. This is a blood poisoning. It is not uncommon for a person that is dying, as organs begin to shut down.
Mom died at 3:25 p.m. on Friday, August 11, 2000. Through this whole thing, never once did she complain to us how terrible she felt. She was one of the bravest women I have ever known. My life is a lot more empty with out her. But thoughts of her fill my heart everyday.
When you are a caretaker and your whole life is (for a time) devoted to the care of your loved one, it takes time to wind down. It is like being in a battle for a long time, and suddenly the war is over. You wake up tense, ready for the fight, but you have no battle to fight anymore.
Although the days with mom were the worst in my life as Dave and Terri and I watched her die, they were also the most treasured. Nothing in the world can bring a family closer together as they care for a parent or loved one as they die. It is a privilege, and if you miss it you will never know the wonderful moments you let slip by. It was my honor to care for my mom and it made me admire her more than ever before.
Marcella Vaade 1924-2000 Forever in Our Hearts
copyright 2000 Susan Peticolas Lahti