Gone...But Not Forgotten.

Just a note to let readers know, Ed is gone, but he is NOT forgotten. Future posts are coming to this Blog...soon coming are some notes on why I think Ed was an amazing man.

For now, I am still getting adjusted to not having him here. My mom is slowing adjusting and that helps the rest of us adjust.

I am in the 'thinking' process of writing letters to his doctors and nurses, and drug manufacturers, all who provided tremendous care and drugs in Ed's journey with brain cancer.

So, just because Ed is gone, doesn't mean this is the end of this blog. It is just a pause.

The End of the Journey

 

Ed with older sister, Janie, one of the last pictures taken of him.

I had planned to take Wednesday, March 30th, off from work as a 'fun day' for me and my daughters to spend together at Atlantic Station, Atlanta, and woke that morning filled with anticipation of a day of shopping, dining, and laughing and giggling with my girls.

Before I even got in the shower that morning, my Mom called. She was crying. She said 'I think Ed is not going to be here much longer, if you want to see him before he goes, you should come now'. Change of plans.

I made a couple of phone calls, threw on some clothes and drove to Mama and Ed's house.

When I arrived, Mama was feeding Ed baby food. He was awake, and aware. But, I too could see a difference from just a day or two before.

A couple of weeks now, me, my brother, sister-in-law, Ed's sister and my aunt had been taking turns spending the night with my parents because Ed's condition had deteriorated. Mama was afraid to be in the house alone at night; Ed might die while she was alone with him.

Since Hospice began just two weeks before, Ed was receiving attention from a nurse at least two times a week, an aide who bathed him at least two times a week, and had begun experiencing more pain and finally agreeing to take Lortab. Going to the toilet had become a major problem. Even when my brother could lift him up off the bed and put him on the toilet, he could not hold himself in an upright position, my brother had to sit next to him and support him. But he did not want to lay in bed and go in his 'pull-ups' as we call them. He began having coughing and near choking spells when he ate, so his food was changed to all soft foods or liquids. His meals now consisted of yogurt, pudding, oatmeal, and baby food. When sleeping, he often sounded congested.All his time was spent in bed now. He slept alot.

On this morning, he just looked and 'felt' different. We called Hospice and asked them to send a nurse. Diedre, the nurse who saw him twice a week came within two hours. She did an evaluation and called her supervisor. She then told us, it won't be long.

At this point, Mama had given Ed one morphine tablet by mouth the night before, because his pain seemed worse than ever. Ed never called out in pain. But he would squinch his eyes together, sweat, and squeeze the fist of the hand that still worked (to some degree).

Diedre said a critical care nurse would be arriving that day, and she would be staying the night with us. She told us they would begin administering liquid morphine by mouth to help his breathing and pain. It would be given every two hours. She told us anything we put in his mouth at this point, food or drink, was going into his lungs, not his stomache. She said his body no longer needed food or liquid. She explained the morphine would make him rest, and he would not feel hunger or thirst.

Ed drifted in and out of sleep that day.  I don't think it sank in to any of us - Mama, me, Ed's sister Shirley, my brother, my daughters....who else was there - I am can't remember now - that this was the beginning of the end. That it was closer than we realized. But we did have a very good conversation with Ed, about where he was going, and that that was okay, that we would be alright, and that we were proud of all he had done and how long he had managed to live with his illness when he was told he wouldn't live six months with it. He listened to his favorite Bible verse and he was at peace.

Julie arrived that afternoon. We welcomed her because she was knowledgeable in the ways of the dieing. She told us what we should do to make him comfortable. She told us things we shouldn't do, lest we upset him or disturb his rest. Her presence was comforting, because now we were not alone with our ignorance.

 

Ed with neice Stacy on his birthday, March 28.

Julie left at 8:00 pm Wednesday night, and Stephanie arrived.  She was tall and thin and blond. She was young. But again, the presence of a person who watches people die for a living, was comforting. She spent the night in the recliner by Ed's bed. She ate breakfast with us at the table the next morning.

Thursday morning, Julie returned to watch over Ed, and the house was full of people, coming and going, talking and laughing. They came to Ed's bedside and held his hand, spoke comforting words to him, and left soft kisses on his forehead, and teardrops on his chest. He woke now and then and his eyes watched us. When coaxed, he would smile. He didn't appear hungry or thirsty, but we would wet his lips with a wet cloth. When he was awake, we talked to him. We talked of heaven, and seeing loved ones gone before, and of happiness and love, and of promises that only God can keep.

Thursday evening, when Julie's shift was over, (Can I remember her name? Was it Monica?) a new nurse came in to watch over Ed. She was a black girl, I do mean black, and so pretty. We welcomed her in and she settled in to the recliner with the clipboard. She took the quilt we offered her, because the house gets cold at night. By morning, she was talking and laughing with us as if she were part of our family.

Friday, our third day of watching and waiting, the house was yet again full of people. Family and friends who wanted to be near. For some families, this is morbid. For our family, it was healing. Everyone was coming together to bring Ed love and peace, and to bring Mama and us kids comfort and company. Family that we do not see so often was coming by to sit with us. 

Since it was a holiday, (Good Friday), there would be no critical care nurse today. We were nervous about that, but Monica showed us how to administer the morphine drops and the drops that helped calm the ragged, gurgley breathing. She reminded us to roll him from side to side every few hours to change his position, which helped his breathing and helped to keep bed sores at bay. She showed us how to give him Tylenol rectally. When she left, we were anxious, but knew we could do what ever needed to be done to keep Ed comfortable.

As the day went by, Ed was awake alot. He opened his eyes and watched. He blinked his eyes to answer yes or no. And he squeezed the hand that reached for his. He would also reach for a hand to take. We talked with him and prayed with him. We put cool cloths on his head and changed his position so he would be comfortable. We let him hear us laugh and talk. He was dieing, but he was being with us. 

To our great relief, we received a phone call from Hospice, telling us they were sending a critical care nurse to be with Ed and us through the night. I could not thank her enough. For at this time, Ed's temperature had reached 104.5. We had begun laying cool cloths not just on his forehead, but his arms, legs and stomach too. We had given him a Tylenol rectally, and his temperature came down a degree for a short while, but then it went back up. I knew this was one of the signs that the time was near. I learned that from being with my Granny when she passed. Another sign is breathing changes. His breaths were coming farther apart and more labored. And yet another sign was the change in skin color and temperature. His feet had been icy cold earlier in the day, but with his fever, his feet were now quite warm. But the color of legs were blotchy, and the blotchiness was slowly going up his legs towards his torso.

That evening, about 8:00pm, Pam arrived. She was a tall, thin black lady. She was very nice and seemed extremely knowledgeable. We welcomed her in and she went to work accessing her patient. She confirmed what we already knew; the time was near.

That night, it was Mama, me, my aunt Judy, my brother Bo, Ed's sisters Shirley and Janie, who stayed the night. We stayed up as late as we could, taking turns talking to Ed quietly and softly, holding his hand - which no longer squeezed back, and keeping the cloth on his head fresh.Ed's breathing continued to be labored, and at times he would seem to not be breathing - up to eight seconds at a time, and then he would take another breath. He had begun having hiccups earlier in the day, and now they came ever so often, often deep and loud. But he did not seem to be in distress or pain. Earlier in the day, when I would sit and hold his hand, he would have cycles of relaxation, and then he would grasp my hand hard and I could feel the left side of his body tense and tremble. If I put my hands on his head, I could feel what would be maybe described as electrical currents...I felt like he was having mild seizure activity, but the nurse said one of the medicines they were giving him, which helps with anxiety, would prevent him from having seizures. But I do think he was having mild ones. Not body shaking, head jerking ones though. These relaxation and tensing cycles came about six minutes apart for most of the day and into the evening. But he did not clench his eyes or mouth during these events, so I pray that means he was not experiencing pain.

At about 1:00am, we all went to bed, (or to cots or pallets) to try to rest. Mama slept the least of all us, her and Ed's sisters would go in and check on him and talk to him. After talking a little while, me and my Aunt Judy fell asleep on our pallet in a pitch black room in the back of the house. A little while later I heard Ed hiccup loud and I awakened for a minute, but it got quite and I fell back asleep.

Sometime later, in the perfect blackness, I heard some one calling my name..."Carolyn, Carolyn. Wake up. It's time.' It was Pam, the nurse. I fumbled my way out of the room, Judy close behind, and made my way to his bedside. But I was too late, he had already taken his last breath.

Mama was there. She was with him when he went, though she can't remember him taking his last breath. Pam was with him up until she left Mama with him to come get me and the others. I pray he knew he was not alone, as we all promised we would stay with him to the end.

I am happy to say, he looked peaceful. He lay on his back, mouth open, eyes closed. I thank God he went in peace. 

Just as we talked about on Wednesday morning, the angels came and took him away to Heaven. He has no more brain cancer, no more brain tumor, no more seizures, and no more headaches. He doesn't have to worry about laying in bed all day, having to be spoonfed, or having to have a catheter or have a diaper changed. Now, he is in Heaven with Jesus, God and all his loved ones who went before him. He walks by the stream and lays in the green meadows, and no longer walks in the shadow of the valley of death. His journey on this earth is over.  And what a reward he has received for enduring that journey!