From my Journal January 16, 1996
I think we are saying goodbye to Kysa. Have spoken to Maggie who heard from Catharine. She has been to see Kysa in the hospital-they signed a release form to take him off the saline IV. He has a morphine drip, which he is able to administer as he needs. When Maggie first spoke to Catharine, she said when she saw Kysa, to please go to him for us and look him right in the eyes, and tell him everyone of us, and mention us name by name, love him and we are praying. She did that and she spoke to him and told him that we would all be okay if he had to go. And she said, for a brief minute, he opened his eyes and looked right at her and told her “I’m not worried anymore.” Catharine said his skin is almost translucent, and today his spirit was coming through more strongly than she has seen it in a very long time. The doctors from hospice said that they would estimate a week to 10 days on the outside; given the condition his body is in. They did say his heart and lungs are fairly strong still: it’s just the rest of his body that is shutting down. So he is getting no nourishment-he sipped a little 7-up, but that’s all. He is not able to swallow anything. But he has found a measure of peace-thank you God, for that. And Catharine is truly making an effort. She told Maggie that anybody should call her at anytime, and she is being supportive and compassionate with mom and dad. I had real concerns how things would go. She seems to have changed though and wants to do all she can to be the message center, and allow everyone else to do things, as they need to. I don’t know if David is out of the country, I don’t know if Ken has been called. All the practical matters of death must be dealt with-we can at least all rest easy that Kysa is finding some peace.
Aboard Continental heading towards Houston, then Denver. I never thought to be doing this back in June I thought that was it, and that I’d said goodbye to Kysa. Now that I have decided to go, I worry that he will die before I get there. And I worry that the plane will crash, and I’ll die, and how will mom and dad deal with the deaths of 2 children. And I worry that when Chuck goes into talk to Pat on Monday about Walt and how out of hand he is, and if they fire him or demote him, then Walt is the high wire type that would come back with a grudge and shoot Sarge. It’s all-irrational, I know, but at the moment I’m feeling very shaky. Neither Sarge nor I slept much last nite. Alec had gone to spend the night with a friend, but he called at 1:30 and asked if he could come home because he was homesick. Thank goodness Lawrence’s folks understood, and they drove him home. I know that what it was is my leaving, and Kysa being so ill, and me being upset about it. This is all so unreal, even if it was anticipated. And to be honest, a part of me still believes that Kysa will come through this too. That he won’t get any better, but that he will linger on and on like this. And I have trepidation about being in Durango. I know I will be crying, and I don’t know if it will be accepted, and for me, that means, they don’t accept me. I have talked to myself, and made plans in my head but it is stressful going into it, especially not knowing what is going to happen-and knowing how traumatic it was in June. And yet I feel I need to go-for Kysa, for myself, for mom and dad, for Maggie and Joseph, since they can’t. If Kysa is going to die, and it seems as though he is, I want to be there, if I can, to share as much as I can, his journey.
2nd leg of my journey”
A change of planes in Houston. I hadn’t realized we would be stopping there. In the midst of all my emotions, I stopped to think it was pretty neat to be in Texas, if only at the airport. It’s the only time I’ve been there since I was born. This trip is awfully long, made longer, I’m sure, because of my anxiety to reach Kysa. Once I get into Denver, there is a long layover to Durango. That part of the trip is absolutely one I’m not looking forward to-I hate the little puddle jumpers over the mountains. Really working the tools of the program—
Caught an earlier flight to Durango. I’m exhausted and the closer I get, the more pain I feel. The Rockies, snow-covered, are below me. Their magnificence proves to me there is a God. I need to hold close to my spirituality in the next weeks-that will get me through this. I talked briefly to Sarge in Denver. I miss him, I miss his strong arms and loving words.
I am here with Kysa, sitting at his bedside. I have prayed, I have meditated, and now I try to put words to paper. What is going on is so big that it is difficult to put it on paper. I wish I had Joseph’s creativity and artistry; maybe it would be easier. Every so often, the morphine drip gives a soft “zzzt” sound. Helped Kysa shift in the bed, he had slipped down. He sleeps mostly-but every so often he’ll open his eyes and move his hands. Sometimes he will drink a sip of water. His throat hurts, which makes it hard for him to swallow. Sarah rented him a hospital bed, which is good, and he has flannel sheets on it, with a down comforter. That will make Maggie feel better. She was worried about that. I worry about my competence to take care of Kysa-I want to, and am more than willing. I’m just afraid I’ll do something wrong. He speaks only in the barest whisper-it is very difficult to understand him. I hope this doesn’t sound too awful, but I sit here and think, what if Kysa should die while I’m here? What do I do? My heart breaks for him; he is such a shell of who he was. The tumors in his neck have grown from under his ear to down to his collarbone. There is such a thin layer of skin to cover him. Around his neck he wears a necklace of amber beads with a jade Buddha. I pray that God will have mercy on him and release him from this.
Jan 22, 2:45pm
Bonnie (Hospice) just left. She’s a lovely, warm person. Took all Kysa’s vital signs-his blood pressure is low but she says that is not necessarily indicative of anything, as he has always had low BP. He is to be given as much morphine as he wants, to be comfortable. There is some fluid in his lungs, and that is indicative of the stage of death; his heart cannot pump fast enough to distribute liquid so it settles into a dependent area. She does not think he will die today-though she said there are no firm ways to predict. She did tell us other signs to look for. He has some bedsores but he doesn’t want to move positions and Bonnie said at this point she isn’t too concerned about them. The next few days should see this done.
Meanwhile, I don’t even allow the thought inside my head as to what the possibilities are with mom. Maggie told me yesterday on the phone that she has noticed a large growth on mom’s left breast. It is large enough that it is noticeable under her blouse. She at first thought she was imagining it and she asked Joseph and Eric if they had noticed anything. They had noticed the same thing. When Maggie questioned mom about it, she said mom almost seemed angry that she had mentioned it, and quickly changed the subject. The one thing I know out of it all is that mom won’t go have it checked. And I have fear that it truly might be a cancerous tumor, and I can’t begin to deal with that yet. I am not surprised, if it is something, that it is a growth over her heart. I know Kysa’s illness and pain have broken her heart, and I don’t know that she will much survive him. All I can do is continue to pray, and then pray some more.
Jan 25, 4:15 pm
My heart breaks for Kysa. I was just watching him as he was lying in bed, and he turned his head to the window and looked out. What does he think about as he lies there, basically immobilized? Whenever he moves, it is in slow motion, or like he’s moving underwater. He has quite a bit of pain in his legs and we have upped the morphine in the last 24 hours to more than twice from Monday. It is now 9 mgs. I wasn’t able to write yesterday, too busy caring for Kysa, too tired from being up, too emotional with what’s going on. The days are all starting to run together, so I maybe repeating myself at times. There have been some special moments: Kysa eating the fresh snow that Robert R. brought him, Kysa, when I was talking to him about the lights, and moving down the tunnel, looking right at me saying, albeit in a near whisper “I know all about that crap!” Kysa asking me about my can of Pepsi, asking me to massage him, him reaching for my hand twice last niter, and saying to me that I must be exhausted. I have prayed and prayed and now, very often, I beg God to release his spirit. Please, God, what is being accomplished by this? His body is covered in the mottled purple bruising that happens, huge purple welts. His feet and legs hurt, my heart breaks over and over again. Mom sent a beautiful letter to Kysa and Sarah, which arrived today. Kysa was conscious enough to have it read to him.
“In my imagination, I am in the same room you are, making you as comfortable as possible, and putting all my love in the atmosphere around you. That is my wish for you, that you are surrounded by people who love you and keep you comfortable, and that you are at peace.
Everyone in your family wants the very best for you-your father, Joseph, Maggie, Robert, Alison, Catharine, Dave, Ken, your nieces and nephews, and me. I participate spiritually at Mass everyday, uniting myself to the millions of people in every place and circumstance in the world-all of us offering this powerful prayer.
My special thanks to you, Sarah, for your generous spirit and the love and energy you are giving to Kysa. I appreciate every effort you make, and my prayers are always for you to continue to be able to do all the things you are doing for Kysa. Try to allow yourself some rest when possible, and remember that everyone is sending you love, best wishes, energy-whatever you need at this time. My love to you both and prayers, Mom.
Jan 26, 1996
Kysa Charles Mandeville Miller died this morning at 3:00 am. Sarah and I were here with him, and with a little distance, I will be able to take in the huge experience this all has been. I believe I am numb at the moment-lack of sleep and such an intense amount of emotion-and relief that it is finally over. Shock that its over because a part of me believed it would go on forever, and the surreal feeling of it all. I have cried, but I know there is much more. I need to come to grips with the physical aspect of it-the feeling of helplessness and hopelessness, the pain of seeing my brother suffocate. There are memories that I need to learn to view in another perspective. It was at once the most dreadful and terrifying and most life-giving event of my life. Around 6:00 last night we were just having a conversation. Sarah had just come home early from class. And she suddenly got this look on her face and cried “Kysa, what’s wrong?” He was starting to strangle and she propped him up. I thought that he was going to die at that point-I had no idea how long it would actually take. From that point on the whole thing blurs-we got Kysa to breathe a bit more normally but we knew he was starting the process and I called Robert Royem to have him and Catharine come over. She was still in class but he came over and we started talking Kysa through his pain. We told him to let go, fly away. There were tears in all of our eyes-he was struggling so. At some point Catharine called and I told her to come over immediately. She brought Jessica, Audrey, and Alysa. To an outside observer it was, I’m sure, a fascinating scene. We prayed, we meditated, we did Reiki on Kysa, anything to help him. I tried reaching our brother Robert at Farquarht’s-but the music there was so loud they couldn’t hear me, and hung up. A few minutes later I took the phone outside to try again. This time I was able to reach him and told him to come over. God, the feeling of relief was indescribable! I knew Robert needed the opportunity to spend time with Kysa, given all that has gone on in the past months. Robert came over and it broke my heart all over again to see him kneeling next to Kysa and holding his hand. Kysa was in and out of it by now-but amazingly lucid considering the amount of morphine he was getting. He knew Robert was there and they held hands for a long time. Kysa looked right at him and told him to take care of himself. I kept busy with giving Kysa ice chips or water-he was so very thirsty, or massaging his legs and arms. There was a certain consciousness throughout the evening-amazing really. Audrey fixed his feet for him at one point, and he winked at her. He continually asked for water and at one point wanted some of Catharine’s peach juice. She put some on her finger and rubbed it on his lips and in his mouth. There was a point in the evening at which we could see he was wanting to let go, and he said he was ready. Yet his body continued to hang on. Lots of water, he said, people were made of water, lots of fun in water. He looked at all of us and said we were all wonderful people. The physical aspect of what was happening was horrible to watch really-his body turning purple where the blood was congealing, the terrible thirstiness. We kept telling him to go towards the light, that Grandpa was waiting for him. I was very proud of myself that all of it, I was able to handle-I didn’t fall apart. I got ice for him, cold cloths; he was burning up internally, massaged his arms and legs. Through parts of it, he had us all laughing-his sense of humour was there. There were tears too, lots of them. Near 11:00 or so, we realized we were going to need more morphine for him before morning, and I was to go and get it. Catharine sent Jessica and Alysa home with Robert at that point, and I dropped Robert M. off at his apt after picking up the morphine at Mercy. When I got back to the house, Sarah changed the syringe-he was getting quite a lot by that point. He was thirsty and I stood to give him another ice chip. At that moment, he clutched his head and let out a horrifying cry-and stopped breathing. I will never forget that moment. I don’t know how long passed and I went to the phone to call Catharine and tell her that Kysa had died. While I was on the phone, Sarah called me from the bedroom, and I went back in and he had started breathing again. It was the apnea that I had read about. And that is when the torturous part started, of watching my brother suffocate. He was saying throughout the evening to help him and we did all we could to make him comfortable, but we were limited. From midnight on, he was making a horrible breathing sound-it was so constant-I never though it would end. He had consented to a pair of socks by then, and we covered him with the flannel sheet and a light blanket. We begged him to let go, but he didn’t seem able to. After listening to it for a while, Sarah took his drum, and started pounding it lightly. I stroked his hair and arm and told him to let go, to fly free. I have never loved anyone so much as I did Kysa in those moments. He struggled so. Earlier in the evening, I had seen the moment in his eyes where he became ready and he said he was, and that there were so many choices. I truly felt he was looking directly at God. And now, in those final few hours, I had to realize that most of Kysa’s spirit had already left, and just a small part remained to finish the physical aspect of death. It wrenched my heart to see-he was struggling so, and for brief flashes, I would see consciousness in his eyes, and a tear fell from his right eye. I almost lost it then and tried to cover my ears to the noises he was making. I went out to the living room and begged God over and over, let is stop, please make it stop, why does he have to suffer so? When I went back in, Sarah was lying half on the bed and I told her we had to sleep-this could go on for hours. The morphine was as high as it could go on the dial; I felt that if we could give him enough more to relax him physically, that he might be able to let go spiritually, so Sarah and I used the syringe to pump more in. The sounds he was making continued, but more slowly. It seems the physical pain had been distracting him. I fixed the pillows for Sarah-she lay down next to him with her hand over his heart, and I covered her, and I lay down on the futon couch beside his bed. I didn’t think I would be able to sleep with the breathing noises he was making, it was so loud, but Sarah and I were both so exhausted that the moment we put our heads down, we were asleep. I’ll never know what woke me up, but at 3:00 am I woke suddenly and stood up, and called Sarah’s name. She woke at the same time and we realized the noise had stopped, and we looked at Kysa and realized that he had died. His body had been getting cold even before we slept, and his lips blue, but now he was cold all over. It was shocking to realize it was my brother lying there; I didn’t know what to do, so I went to make tea for Sarah, and then I called Catharine to tell her. So much of what happened is a blur. I made phone calls to Maggie, to dad, to Joseph, and my heart broke anew each time I said he had died. Once Catharine arrived, she went into the bedroom and I went out to the living room. I had so much pain inside of me that I didn’t know what to do, so I lay down on the couch. I don’t know how much later it was when Catharine came out and asked if I wanted to go back to her house to sleep. I didn’t know if I wanted to or not but it was an action to take, so I went and asked Sarah if she wanted me to stay and she said it didn’t matter. She was lying next to Kysa on his bed, her arms around him. I didn’t realize she was in shock too. I put on my boots and went over to Catharine’s. It was over….