Here is an update from Melissa – she finishes Cassandra’s last days…
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Hello from Oklahoma. My girl and I are enjoying the open road trip. (w my brother Bob, Dad & Kathy) Dad and Bobby fight for the driver’s seat. They say I have too much on my mind to drive safely. Of course what this translates to is that they are chauvinistic pigs. (and I love them)
Tuesday, March 23, 2010
I knew the end was near, but in my head, I still thought we had forever. It’s hard to wrap your mind around what grieves your heart. I think some people were maybe a little edgy that Cassandra might die on my birthday. For me, it would have been an honor. It doesn’t matter whether it was the day of my birth, or two days after…. I will forever associate my birthday with the death of my daughter. It’s not a bad thing at all. She’s been released from the confines of a sick body. Just the same as I’ve not truly had a Valentine’s day since her birth on that day. It’s not something lost, it’s a blessing. Both events will bring me joy, someday, I trust.
Cassandra was still able to make simple needs known if you asked with a yes or no. As she got weaker, it didn’t stop her from trying to crawl out of her body. There is no better way to describe her delirium. I tried to let her do whatever she wanted. One moment she was sleeping, the next throwing her feet out of bed. She didn’t always have a destination in mind, sometimes she would just say, “get up”. The lazyboy rocker that the Wounded Warrior Battalion had delivered last September (after the ICU stay for the pseudomonas) seemed more comfortable for her, but it was only for 1/2 hour or so before she was pushing forward to get out of there too. She had her last wheelchair ride today.
The Hospice “crisis team” came on board today. What this entailed was having a LPN at the house around the clock. Jim hoped they would be support for me. I was perplexed. There was no more ‘high tech’ nursing going on. Initially, I resented the need for a crisis team. I am my daughter’s mom, her nurse and if I can’t get it done…. then must be it didn’t need to be done. Still, I agreed with Jim. If he thought it was a good idea, I owed it to him and my family to give it a try. Besides, having the LPN on hand to make calls into the RN would be easier than me talking to a receptionist, having the RN call back and then decide whether or not a home visit was needed.
After the first LPN arrived, I went upstairs to sleep a little. I knew I was a little “itchy” and it was from lack of rest and sadness. I hated the mean feelings inside of me. I knew whether I tried to suppress them or not, there was a sting to my words. I slept until Diane came up to ask me if it was okay for the nurse to give Cassandra tylenol for a fever. She’d had a small fever before I laid down, but not anything so striking that I would want to use a suppository. She had started choking on liquids earlier in the day, so it wasn’t a good idea to have her try to swallow pills for the fever.
We tried treating the fever without medicine. First, the oxygen concentrator (puts off a lot of heat) was put outside. We then turned on fans, used cool washcloths and removed CJ’s sheet. Anything to avoid the suppository. Unfortunately, after a few more hours and no break in the fever, it seemed logical the fever was the cause of some of her discomfort. Cassandra couldn’t tell us one way or another. There are many ways to have pain when dying of a disease that makes your blood so thick it clogs the vessels, or just the opposite by having low platelets and loosing volume by bleeding out. Cassandra’s stomach was swollen and she had tenderness by the spleen. (upper left stomach under the ribs)
Even as bad as this evening was….. I still thought there was more time. I’d hold my hand over her heart and could feel it beating about 160-180 beats per minute. It was hard not to cry. All I could remember was marveling over her as a newborn. Ten perfect toes and fingers, a smile that seemed glued on from birth and that tiny heart beating in her chest. How could it be that the shell that held my beautiful daughter had let us down? I wanted to scream, “DO OVER”.
About 9pm, it was obvious that Cassandra needed an increase in the amount of pain medicine. The LPN called for the RN to come and assess. The RN was to the house within the hour. She quickly reviewed the pain pump, called the doctor and changed the pain pump settings. She had us give three boluses, each ten minutes apart. I really didn’t notice any difference in Cassandra’s comfort. The RN left. I’m sure she was convinced, in her head, that it might take a few more boluses- which we could do once she left.
The next 3 hours were nothing short of hell. Cassandra’s breathing rate doubled, so I switched her from the nasal oxygen to the face mask. We tried repositioning her. I tried singing inspirational Christian songs, rubbing her leg, arm… whatever. I gave her some IV Ativan – which is for anxiety but also can help with nausea, pain. Again, as many other times in my life, I’d reached the end of Melissa. I prayed with my family, begging God to take Cassandra out of the shell holding her to earth. I told Him, “I never thought I’d ever ask you to take my girl…. but PLEASE take her out of this pain. Shortly after that prayer, I pulled the pain pump from it’s bag to check and see how many boluses we had given. An orange light was flashing and the pump display said, “stopped”.
I flipped out. If I could remember the vile that flew from my mouth, I probably would not share it. My family has told me and I am not proud. My beloved daughter had just been forced to endure the complete withdrawal of pain medication because the pump had never been restarted after the dosage increase. Instead of providing her with improved pain relief, the inattention to detail brought my girl more distress. I can’t think of anything positive to take away from her having to endure such pain, other than perhaps more reward upon entering Heaven.
Wednesday, March 24, 2010
Once I turned on the pain pump, my brother used his watch as a stopwatch. We knew she could have a bolus every ten minutes. Nothing was going to “fix” having missed 42 mg of pain medicine each of the two hours it was withheld…. but we would do all that we could to make the remainder of her time a little more comfortable. When I discovered the pump mistake, I asked the LPN to get ahold of the RN stat. She didn’t make the call right away. We asked again. I don’t know what I thought another RN could do, but someone needed to do something. Anything. The LPN said Cassandra sounded more comfortable because she was moaning less……… and the pump was working now, “right?”. There seemed no compassion to my families distress, only excuses. The second RN came about 1 hour after I turned the pump on. She reviewed the pump, commented that we’d given many boluses…. and that’s about it.
I took Jim by the hand and went into the kitchen. I asked him for permission to ask the nurses to leave. I didn’t see where they added to Cassandra’s comfort at all. The LPN was confrontational and making excuses almost nonstop. We were in agreement. To make sure we weren’t just crazy parents, I called Susan into the kitchen with us. It was unaninumous. They needed to leave. We were polite, considering the circumstances.
Just as Jim and I got back to Cassandra’s head, I noticed her breathing had changed. It had slowed down, but it was also more comfortable. I put my head down next to her head and told her to look at the sneakers on top the TV. I told her, “put those sneakers on and run to the light. You have done a very good job, but I want you to go now. No more pain for my girl…. but I am going to miss you so much. I don’t know how I’ll manage without you, but I am so blessed to be your mom. I love you so much. I am so proud of you”. Again and again, I spoke softly in her ear. Even now, I’m surprised how easy it was to tell her to go, but holding her bound to this earth didn’t seem an option either. I never wanted her to die. I still long for her. My soul aches for her and probably will long for her, forever.
I raised up away from Cassandra’s bed to tell our family that it wouldn’t be long. We’d just sent Dad and Kathy upstairs. In the short time that it took for them to descend the stairs, my girl died. It wasn’t scary anymore. She was comfortable. Her chest majestically raised off the bed ever so slightly, and I watched her life force leave the body. It wasn’t only visual. It was a feeling. I knew she’d left. I cried out, “—- cancer” Cancer didn’t win. My daughter won. She wasn’t stuck dying in a hospital as she thought. She didn’t die at all, really. Cassandra died to the present, but will remain evermore in our hearts.
As our loved ones mourned over Cassandra’s body, Jim’s dog Annie, jumped up on the bed. Annie is trained special to tend to people in distress. Tucker the cat had been hiding under the hospital bed for the previous hour. The animals probably were “in the know” more than we give them credit.
I passed the torch to Jim. He took his place, stepping up to the plate to take care of the shell that was once our daughter. He handed me lotion, encouraging me to rub it on her face to help ward off dehydration. Her skin was already beautifully smooth, so I couldn’t understand what he was asking me to do, but still I listened. Jim placed Cassandra’s body so lovingly in correct alignment. Again, I have no idea what he was doing, or why… but Jim knew. He pulled the sheet up off the edges of the bed and covered her body. He took a lily from my birthday arrangement and placed it on her chest. Her body looked so beautiful, so at ease. Please excuse my boldness, Cassandra… at that moment, was clearly the most beautiful woman I’ve ever seen.
Our family waited with us until just before the funeral home personnel arrived. Cassandra was gone, so I couldn’t imagine needing to say anything to the shell that I hadn’t already said to her soul……. but there was still more to say. I’m sure everything I spoke over her, I had said before… but words just kept babbling out of my mouth. I stayed with her, knowing it was going to hurt to see her leave the apartment on a death gurney. All I can say, “It could have been worse”.
Jim followed the hearst to the funeral home. Long ago, he and I had a running joke if I couldn’t heal a patient, I could simply refer to Jim for his services as an undertaker. I remember when Jim was in school I couldn’t comprehend how he could do what he was going to do as an undertaker. He probably felt the same about what I chose as a living.
I cared for Cassandra in life and Jim cared for her after death. Jim went to the funeral home, “to make sure they take good care of her”, is what he told me. I trusted him, telling him, “Thank you, I don’t think I could do what you are doing”. I had an idea that he wanted an active role in making sure her body was respected. Never, ever… in a million years, did either of us expect that we would be called into duty for our own child. However sad this is, it is also an honor. I am proud of what I accomplished for my child, and I am so proud of what Jim was able to do to ensure her body, after death was kept sacred.
I waited a few hours before I went upstairs to lay on Cassandra’s bed. It had been months since she’d slept there. The sheets had been changed numerous times since we had a lot of visitors. Still searching for her scent, I found the last outfit she wore. Carefully, I sealed it in a ziplock storage bag. I didn’t need the reminder right at this moment, but I wanted to be sure to have access to it when the need arose. It was about now that I started to wonder if I was a little crazy after all.
At around 1 pm, friends and family started arriving. I stumbled downstairs in yesterday’s clothes. At some point, I think I cried myself to sleep. The very thing I was dreading….. all the “sick person” stuff, was in the living room like a heavy blanket, almost suffocating the air out of my lungs. The medical company that loaned them was expected in the next hour or so. It was such a sad scene, some people couldn’t even sit in the living room. For 4-5 days, our girl had needed this stuff, and now she so clearly did not. It was hard. A few organizations had been sending a warm meal for all of us daily and they continued on Wednesday too. Members of my Bible group brought food, love and hugs. Finally around 6pm, I thought to shower. It would be fitting to go sit at the ocean and watch the sunset. My sisters took me. It was a so-so sunset which was perfect. Had it been beautiful, probably that would have made me mad.
Thursday, March 25, 2010
Initially, Jim had planned to have Cassandra dressed in her military blues for the ceremony. When we talked about it, we decided that it might be more fitting to send her off in her PT gear. Jim grabbed her Marine PT uniform and her favorite running shoes. When he asked me if I wanted to the funeral home with him to dress her, I hesitated, but only for a minute. Of course, I would go to dress her and it would be my honor.
I wasn’t afraid of seeing a dead body, I’ve seen my share. I was nervous seeing my daughter’s dead body. A very kind lady led Jim and I to the room where Cassandra’s body was waiting. She was still wrapped in the sheet, wearing a tank top and shorts. I said a prayer to God, thanking him for the beautiful girl he gave us and for the 24 years we had with her. I asked Him for strength to do what needed to be done. We talked to her as if she were listening. Pulling the pants up over the running shorts was much easier than getting the jacket on. Running shoes went on easy. The funeral home team came in once we had her dressed to help move her body into the casket.
I am not sure what all went into Jim’s side of caring for Cassandra’s body, but what I know for certain is that she looked the same as if she were home sleeping at the apartment. Helping to dress her was a blessing and a honor.
Thank you prayer warriors, for staying with us. Please remember all of our friends who are still suffering with the devastation cancer brings. May they all be victorious. It would be such an awesome tribute to their friend, my girl.
Pray incessantly! Love Mel
