Subject: Communication and support Date: Fri, 27 May 2005 12:06:19 -0400 From: Gina McEwen Hello, This letter was written by me to my siblings and my Mom the night of Dad's Memorial Mass on May 16h. The letter just below it was a continuation of my letter, written by Mary Lou on May 19th when she returned home from Mom's house in Annapolis. Some of you have asked for a copy, so I thought I would share this with all of Dad and Mom's siblings. Please feel free to share this with anyone else that you might think would like to know the details of the last 2 days with Dad. Love, Gina ----- Original Message ----- From: Gina McEwen Sent: Tuesday, May 17, 2005 12:53 AM Subject: Communication and support Hi! I am having a bad time right now. I am sitting at home in my quiet house, with my husband and children sleeping, and missing Dad terribly. I keep looking at his picture on the front of the program and thinking about this past week. And, oh what a week it was for me! As I am thinking about this week, it occurred to me that perhaps I have precious details of moments with Dad that I have shared with some of you, but not all of you. You know, in a time like this, it is hard to remember what you told what to who and when. Then I began to read Dad's "Family Ties" story and one thing came to mind.........Dad gave a gift to all of his children, and that was the gift of communication. He taught us how to share our feelings and emotions in an honest and loving way, which is a gift that most people don't have. I would like to use his example and try to communicate to you what I am feeling, when I am feeling it. I know if I can do this, you will support me because you love me so very much. Right now, I am feeling very sad and lonely. I know it is good for me to be alone in my quiet house, with my family asleep, so that I can feel these emotions that I have put on hold for so long...................but boy is it hard................I can't stop crying! Jerry told us that crying is not just okay but it is good, natural, and healing. But boy does this sadness hurt! It hurts more than I ever expected it to. When I went to Mom and Dad's house on Tuesday morning, I did not expect to be saying goodbye just 50 hours later. Those 50 hours, however, were 50 hours that I would like to share with you so that you all may know the joy, sadness, and fear that took place in my mind and heart during that time. I will try to tell you the details as best as I can remember them. ___________________________________________________________________________________________________________________________ On Tuesday morning, I had dropped the kids off at school and went to the gym to work out. I called Mom at about 9:00, as I often do, on my cell phone from the gym while I was doing the stair climber. I like to call Mom in the morning because my kids are already off to school and I have a little quiet time. When I am working out, it is great because it helps my exercise time pass quickly. This particular morning, Mom sounded very distressed. She said they were having a really bad morning. She told me that Dad was having panic attacks because he was having difficulty breathing. I asked her if she wanted me to come over and she said no, that I should go to school. I was very worried and I immediately called Mary Lou (or did Mary Lou call me? - I can't remember). In any case, I felt worried, anxious, and uncertain what to do. I felt like I should be there, but Mom had told me no. If I remember correctly, Mary Lou told me that she thought Dad was having these breathing problems because his anxiety was high and causing him to panic which was causing him to have trouble breathing. She said if we can get him to calm down, it would help things tremendously. She was going to call the doctor to see if he could prescribe a fast acting anti-anxiety medication and see what else needed to be done. I asked her if I should just go there even though Mom said no. She advised me to call back in 1 hour and go from there. That was a very long hour! I went home and took a shower..............I was very nervous! I think I spoke to Mary Lou again in that hour and she told me that she had spoke to Mom and the doctor and the prescription was being filled. She felt confident, with the information that she had, that this was going to be okay. She decided to come now instead of later that day or tomorrow morning when she was supposed to go to Dad's scheduled doctor's appointment. I called Mom back at about 10:00 and she told me that things had not improved and if I wanted to come, that was okay. I got in my car and went immediately. I called Mary Lou from my car and told her I was on my way. She told me she would meet me there and would stop and pick up a pulsometer (?) on her way, so that she could read Dad's oxygen level when she got there. She also told me that she was having a wheel chair delivered there today. When I got to Mom and Dad's, Dad was upstairs in his bed resting. He seemed reasonably okay for the moment. He didn't seem in terrible distress but Mom had said that he had taken the anti-anxiety medication and whatever else Mary Lou advised him to take and so he was finally seeming like he was going to be able to sleep. Mom was very calmly standing in her room and organizing her clothes. She told me that he had not wanted her to leave his side all morning and that he was very scared. I suggested that she take a break and that I would sit with Dad for a while. Mom then went downstairs and was able to have a little break. I sat down on the side of the bed and held Dad's hand. Dad then dosed and woke up, dosed and woke up. The side of the water bed was getting very uncomfortable so I told Dad that I was going to go find a chair. Just then, the wheelchair was delivered and Dad asked me to go downstairs and bring it up for him to see.................so I did. He then insisted that I should sit in his wheel chair and check it out for him...............so I did. He wanted me to read his "Vision, Mission, and Youth Career Development Program" that he had recently written for JAG................so I did. Then he looked at me and said "Gina, will you cut my hair?" I said yes and he said "Today?" I then asked him why it was so important that he get his hair cut today and he said "Because I don't want to be a cadaver with long greasy hair." Then when he saw the look on my face, he said "You never know, there might be a good looking intern." That was Dad, teasing till the end. I told him of course I would cut his hair and he said "Okay, I'm going to get ready now". Then he went back to sleep. When he woke again, he said "Okay, I am ready now", but he had to get his breathing under control. A few minutes later, he sat up in bed and tried to again catch his breath and gain enough strength to then get out of bed. The getting ready for the hair cut and the actual hair cut took about 4 hours or so, I think, because Dad had to make several stops while trying to get downstairs to the patio where he wanted to have his hair cut. He had to stop to rest so that he could get his breathing under control and gain enough strength to move on to the next resting place. One of his resting places was his recliner chair. While he was in his recliner, we talked a bit. The one thing that really stands out in my mind is that he told me that he has been praying to Pope John Paul and asking him to ask God for a favor on Dad's behalf. When I asked Dad what the favor was that he was asking for, he said "Just a favor, God's choice". At that time, I didn't know what it was that Dad was praying for, after all he had told me "just a favor". But looking back on it now, I think that perhaps Dad was praying for God to end the pain....................not necessarily the pain for Dad, but the pain for us. I believe Dad perhaps didn't want us to suffer any more and that he felt like he was soon not going to be able to stay strong for us any longer and he was scared that he was going to let us down. When we finally got downstairs, I was able to give Dad his haircut. During his haircut, Mom ran downstairs for a minute to change loads in the washer. While standing behind Dad and cutting the hair on the back of his head, he suddenly stopped talking and dropped his head down to his chest and let it bob there. I thought he was having a heart attach of something! I held on to him with one hand so that he would not fall out of the chair and pulled the door open with the other hand and screamed as loud as I could for Mom. Mom then came running upstairs just in time to see Dad lift his head back up and say "What are you yelling about?" When I told him what had happened, he suggested that he was nodding off, but Mom and I thought differently. Let me tell you, I was very nervous finishing up that hair cut! I was really glad when it was over and Dad made it back to the couch. I was then waiting anxiously for Mary Lou to arrive. When Mary Lou got there, she immediately took Dad's oxygen reading and as you know, it was 75 when it should have been over 90. Mary Lou said that Dad must have passed out while I was cutting his hair. She then tried to get Dr. Doyle but got the doctor on call instead. He told her that we should call 911 ant have an ambulance take him to the local hospital. She told the doctor that our Dad is a very stubborn man and she was almost certain that he would want to go to the University of Maryland Medical Center where all of his records were. The doctor advised her accordingly and she relayed the information to Dad so that he could make his choice. She told Dad that the doctor recommended an ambulance to the local hospital and Dad said no and that he wanted us to take him to Baltimore. Mary Lou then very calmly told Dad that we could do that, but there was a chance that he wouldn't make it there alive. He then asked if we would please take him anyways and if we didn't make it, it was okay..........that we were doing what he wanted, that we did the best that we could, and that it wasn't our fault. At that moment, I was horrified!! Mary Lou was so very calm, I was amazed. She called me aside and quietly told me that this is what Dad wants so we will do this. She told me that I needed to be very calm, move slowly around the house, don't show any signs of nervousness or panic, and not to appear to be in any rush. She said that she would ride in the back of my car with Dad and I was going to drive. She told me that my job was to drive and get them there. She told me not to pay attention to what was happening in the back seat, just to concentrate on driving calmly and cautiously and to keep driving no matter what until we got to the hospital. In other words, don't react and don't stop driving. When we got in the car, she reviewed with us what our jobs were.........mine to drive, Mom's to navigate, hers to take care of Dad, and Dad's to breath and not talk. We all did our jobs very well except, of course, Dad! Would he stop talking..............no! He told us to turn here and Mom told him that she now was aloud to tell him to "shut up" because that was the nurses orders. He told us who we needed to contact. He told us that someone needed to call Chris to tell him that Dad might be dying today and he wanted Chris to know that. He told us that we were doing a good job. He was still in control and he tried to make the situation better for us! ___________________________________________________________________________________________________________________________ I'll continue with this story later, or someone else can if they want. I'm very tired now and I am going to try to go to sleep. I feel better and less sad now that I have shared this with all of you. Somehow, it is therapeutic for me to talk, or write..................to just communicate with you. I love you all so very much! ~Gina ----- Original Message ----- From: Mary Lou Brophy Sent: Thursday, May 19, 2005 1:04 PM Subject: Re: Communication and support Hi All, I just got home last night from Mom's house. I wanted to finish Gina's story....you can read if you want, delete if you want. or save for the future. You can feel free to chime in any details that I missed or correct me. I wanted to have this written down while it was fresh in my mind and then I want to move on...... I was concerned about Dad's condition when I got to his house Tuesday about 5:30 or 6 pm. I had picked up a pulse oximeter on my way to Annapolis. His oxygen level was 75% on 5 liters of oxygen, which is the maximum his concentrator could provide. He was pale and there were several reports of him passing out. He was lying on the couch and reported that after taking all the medicines, he was comfortable. I was worried that he would pass out again on the way to the hospital, and if we were getting into the car, he would fall. The portable oxygen could only go up to 4 liters and was an intermittent system as compared to a continuous system . I was afraid that his oxygen would go even lower. He was certain that he wanted to try to get to Baltimore to the UMMC where Dr Doyle was and where his records were. He wanted a bed on 9 west. I spoke to the doctor covering for Dr Doyle and then to Dr Doyle himself to convey his wishes and to emphasize he wanted a bed on 9 west, the oncology unit. Dr Doyle called ahead to tell them we were coming and to see if there was a male bed on 9 west. He said we would have to go through the emergency room and could not be admitted directly to 9 west because that was the only way to get a lot of tests done rapidly. Dr Doyle felt that this was a dramatic change in Dad's condition and felt that he must have an acute process going on, such as a pneumonia or a pulmonary embolism (blood clot in the lung) to account for his condition. I told Dr Doyle that I thought this was just a progression of the disease and that he was approaching the end of his life. Dr Doyle agreed that after the tests were done, if there was no acute process, that he could be discharged to home with palliative care or hospice. We discussed his advance directive (living will) status and the doctor called ahead to the hospital to brief the ER doctor on dad's history and his condition and to tell them to expect us in 40 minutes. Gina, Mom, and I loaded up the car while Dad stayed on the couch resting. We packed up his medicines, living will, sox, a change of underwear and pajama bottoms and loaded up the car. We got Dad into his wheelchair and Gina and I got him down the 2 steps to the patio and out to the car. He only had to stand and pivot to get into the chair and then again to get into the car. We held onto him tight incase he passed out again. We reclined her captains chair in the car so his head would be lower and more oxygen would get to his brain. We had his oxygen up to the max and had the pulse oximeter on him. Gina drove and Mom sat up front with her to navigate. I rode in the back with dad to keep an eye on him and keep him comfortable. We had all his medicines with us and bottles of water. I gave him some morphine and ativan and a couple other things to keep him comfortable. He talked and joked in the car while we were driving. His oxygen level stayed about the same as at home 75 to 80 percent. He asked several times for someone to call Chris to make sure Chris knew that he only had a short time left. Mom and Gina made several calls in the car to various family members and then they called other family members. We got to the hospital uneventfully. We pulled up to the emergency room and We got him into the wheelchair and into the hospital. They wanted us to take a seat in the waiting room, but I told the clerk that I was afraid he would pass out again sitting upright. She got a nurse fairly quickly and we got through the registration process and got back into an examining room. Things moved as quickly as they can when you don't come in the ER in an ambulance. They got Dad on a 100% non-rebreather mask to give him the most oxygen possible. His oxygen levels rose to 88 to 90%. They started an IV because he was dehydrated and gave him fluid. They did a lot of blood work and a chest x ray and a spiral CT scan. They were considering 3 options: a blood clot, pneumonia, or a progression of his disease. The blood test showed an elevated white blood count which is suggestive of an infectious or inflammatory process. The chest x ray showed an effusion which they could not tell if it was a pneumonia or a progression of his disease. The cat scan was negative for a blood clot and also showed progression of his disease. They decided to treat him for a pneumonia with IV antibiotics for a couple of days and see if he responded. They wanted to put him in the medical ICU due to his fragile pulmonary status because they would be able to intubate him and put him on a ventilator easily there. They would not accept him on 9 west due to his condition. There were no beds available in the ICU so they kept him in the ER all night. Around 2 AM all the tests were done and the decisions made and now it was just a waiting game until at least the morning when possible a bed would open up. Mom climbed up onto the gurney with dad, and Gina, Tom Stluka, and Frank and I decided to leave and get some sleep. Tom went home and Gina drove Frank and I to Mom's house to rest and also have access to our cars. I went back to the hospital and arrived in the late morning. Nothing was happening....still waiting for a room. Mom reported that they had been giving him IV antibiotics and fluid and they had given him a breakfast tray. He was dozing on and off. They had had a bad incident during the night where he had walked to the bathroom with a nurse and had a very bad episode of extreme shortness of breath. The nurse said we won't do that again. He used a urinal while sitting on the side of the gurney and even that made him very short of breath. Mom went up to the cafeteria and they had put out a free breakfast buffet in honor of nurses week. She got good breakfast. Early in the afternoon they reported that a bed was going to be available soon. Dr Doyle came into see Dad and basically repeated the same info the the ER doctor had said. The plan was to transfer him to the ICU, treat him for pneumonia and see if he responded. They asked Dad frequently if he got tired of breathing, did he want to be put on a ventilator. His response was always that if he needed to go on the ventilator because his difficulty breathing was due to a reversible, treatable condition, such as pneumonia, then the answer was yes. If his condition was due to the cancer and there was no hope for treatment then the answer was that he would not just want to be kept alive on the ventilator. The doctors all spoke to him and questioned him thoroughly to make sure they understood exactly what he meant. During this time he told me that he was having strange dreams and thinking people were there that were not there, and thinking that there was a box on his lap and then waking up and there wasn't. he said he felt like he was in a twilight zone. I felt that he had one foot in heaven and one foot here. He had also told Mom and I that he felt very well taken care of and very loved and supported. He said I'm going to sit back and let everyone take care of me. He said I don't want to be maudlin but I'm going to enjoy my death. He moved to the ICU and they got him settled in. They hooked him up to several monitors to monitor his pulse, BP, Oxygen Saturation, EKG, etc...Mom, Frank, and I waited in the hallway. He had his own nurse just outside his door who could monitor him closely on monitors in the hallway and also at his bedside. The wall was glass so the nurse could see him at all times unless the curtain was pulled. The ICU doctor came in to interview Dad and ask a lot of questions. He had the info from the ER but wanted to get some info from Dad directly. That interview was tough and Mom and I chimed in a couple of times when Dad looked at us to give the name of a medicine , etc...Again they asked about intubation and a ventilator and also CPR. They changed some of his medicines and only allowed him to have ice chips and a few small sips of water. Tom Stluka arrived and took a picture of Dad. We were told then that no pictures could be taken in the ICU. The ICU rules stated only 2 visitors at a time but the nurse was very nice and brought in a couple more chairs. There was a waiting room around the corner that we were supposed to use so that only 2 people could be in with Dad at a time. Tom Stluka got a hotel room nearby that we could go to to sleep or hang out in if we wanted and still be close to the hospital. Monica arrived later and we all took turns visiting Dad or just sitting with him while he slept. We also took turns going outside to make phone calls, get coffee, have a cigarette, etc...The waiting room was small and cramped and not real comfortable and there were several small children playing in there and I couldn't get a cell phone signal. There were several periods of time that I was not in dad's room during this time due to us taking turns, etc.. I missed one discussion with Mom and Dad and the doctor's where they signed permission for an arterial line and also a central line to be placed to give them IV access, access for blood to be drawn, and also to be able to monitor his blood pressure internally, and also be able to give IV fluids and meds. Some of you may have info and may want to chime in. Monica and I had one particularly distressing episode where Dad had to use the urinal very suddenly and we could not get the nurse fast enough. Dad used the urinal himself and became very short of breath. This was so difficult to witness. The respiratory therapist came in and gave him a treatment and had him do pursed lip breathing and it subsided. The nurse also gave him some ativan and some morphine and he became more comfortable. The nurse said when we left she would apply an external (condom) catheter so that when Dad had to urinate he could just go and it would drain into a bag. This would prevent him from having to put forth any effort and get short of breath. He got a little goofy and asked questions like " I want to know when Monica is getting married". He was very happy and comfortable though. When we were all leaving We were getting the phone number of the nurses station so we could call to check on him. We were also giving the nurse the cell phone numbers of all of us as well as Mom's home number, and specifying to the nurse that Monica and Frank would be just a couple blocks away, and that Mom and I would be farther away in Annapolis. Frank and Monica could get there quickly and Mom and I would be 30 to 40 minutes away. When we were handing out the slips of paper with the nurses phone number on it, Dad asked if he could have one so he could call the nurse if he needed her. We reminded him that all he needed to do was use the call button and we showed him how to call the nurse. I also asked the nurse to keep a close eye on him and told her he may forget how to use the call button. When I told Dad that I was going to take Mom home for the night so she could get a shower and some sleep and get fresh clothes, he was glad that she was not driving and that someone would be with her. He asked me to take good care of Mom. I told him that I would take good care of Mom if he took good care of himself. I hated to leave him there alone. He said what if I don't take good care of myself? I said that I would still take good care of Mom. I asked the nurse to take very good care of him and I told her it was hard to leave him because I could see him slipping away. She assured me she would. We all said goodbye and kissed him and left the hospital. It was very hard to leave him there alone. Monica was worried that the nurse was not on top of things. There was confusion about his diet. The first ICU doctor had written cardiac diet but then the night time doctor had come in to speak with us and said he didn't want him to eat yet. On the way home I did not have a good feeling and wished we were still there. I questioned myself and thought maybe one of us should have stayed in the waiting room around the corner. I asked Mom if she had gotten the chance to say everything to Dad that she wanted to, and she said yes. She said they had months of time where they laid on the couch and held hands and talked. She said there was nothing left unsaid. I had a feeling that he was going to be intubated and put on the ventilator during the night. He would not be able to speak while on the ventilator. I reassured myself that Monica and Frank were close. I reminded myself that we needed some rest (especially Mom who had been up for more than 36 hrs), especially since we didn't know what lie ahead and how long we would be at the hospital in the days ahead. Dad has also told me on a previous occasion that he was not afraid of dying. He said he was ready. He said he was not concerned about the quantity of his life, but the quality of his life. He had also told me that he did not perceive his dying to be an end to his relationship with Mom. He said our life here on earth is only a blip in the continuum of our being. He said he had known Mom before he met her and would be with her again at some point. He likened it to the several times in his life that he had gotten a new job in another city, and had gone on ahead to find a home and prepare, and then had brought Mom and us kids to join him. He said when he died he was just going ahead to prepare the way for her. This was all reassuring for me. Mom and I heated up dinner from Palma and ate on the patio. We slept in her bed together and slept fairly well for 6 hours. In the morning she was packing some things to bring to the hospital for herself and also for him. We planned to leave home around 11 am to be back at the hospital in time for 12 noon start of visiting hours. At just before 11 am we got the phone call from the doctor that Dad was having a lot of trouble breathing and that they could not keep his oxygen level up and that they were putting him on the ventilator. They had asked Dad again and that was what he wanted. I asked the doctor to let him know we were coming and were on the way. I called Gina to call Frank and Monica at the hotel. She called them and they sprinted to the hospital. Mom and I quickly locked up the house and put the stuff in the car and headed to the hospital. On the way we talked to Monica and Frank who reported they were at the hospital and that they had not been permitted in. They were waiting in the waiting room and a doctor and nurse would be in to talk to them. When Mom and I got there, we went directly to the room. We talked to some doctors in the hallway and then found out that a separate conversation was happening in the waiting room with other doctors and Monica and Frank. The other doctors came into the hallway and they all recounted what had happened and how Dad was doing at the time. They told us that Dad's heart had stopped during the procedure of intubating him. They had to do CPR, shock his heart and give cardiac medicine IV to bring him back. They said he was in grave condition and if his heart stopped again, they would not bring him back. The plan was to leave him on the ventilator and if he lived for a couple days maybe he would respond to the antibiotics and we could try to wean him from the ventilator. The thought now was more that this respiratory distress was from a progression of the disease rather than just a pneumonia. We might have to make the decision to pull the plug if he did not respond to the antibiotics. They assigned several doctors to him who stood in the hallway watching the monitors and him. They assigned a palliative Care nurse (Diane) who's job was to keep him comfortable and to guide and support us through the entire process. He also had his own regular nurse who was assigned only to him (Kathy). They let us into see him. Gina, Jeff and Kelly arrived. They let all of us in at first and then we took turns seeing him and waiting in the waiting room. He looked peaceful and like he was sleeping, except he had the tube coming out of his mouth and a lot of lines and monitors attached to him. We talked to him and held his hands. About 1:00 he started to look like he was having trouble breathing again. The nurses were giving him medicines to make him comfortable. I told Mom that she might have to tell him that it was OK to let go, and tell him that we were OK. She stood close to him and held his hand and his head and spoke into his ear and let him know that he had prepared us well and taught us how to love and that we would be OK....He did not have to hold on for us. The nurse Diane came in and said "you know this is it" to make sure we knew he was dying. She asked where the rest of our family was and then went to the waiting room to get them. We were all there and telling him it was OK to go and reassuring him that we would be OK. We held his hands and he died peacefully. The chaplain came and we said some prayers holding hands and standing around his bed. I had a strong sense of him watching over us and looking down on us. I felt his strength and his love and his pride. His wish was to die with his "family around him and the TV off". They told us we could stay as long as we wanted. I asked them to remove the tubes so we could be with him without all the tubes, especially the ventilator. The doctor pronounced him dead at 1:20 pm. Fred and Brita arrived shortly. My mind is fuzzy and I don't remember exactly when they arrived. We all hung around and talked amongst ourselves and to him and Mom. Many people made cell phone calls. The nurses were making arrangements for his body to be donated to the medical school. Because he was not pre-registered with the state anatomy board, this was not possible. A nurse from another program came in and explained everything to us and we were able to donate his body for research and possibly his corneas for a corneal transplant. They would call Mom that evening at home to explain everything and tape record her interview with all the medical info and her permission. We waited with him about 2 hrs before we left. We didn't know what to do or where to go. We didn't just want to leave and go our separate ways. There was not a good place in the hospital to be together and hang out. It was very hard to leave him there. We decided to go to the hotel room to regroup and decide where to go from there. We went to the hotel room and met Tom Stluka there. We started to talk about what we needed to do and started making a list. I am happy that Dad died peacefully and quickly with his family around him. I am happy that he did not suffer much or have his death drag on for a long time. I think he was thinking about all of us and spared us a more painful experience. He would have been proud of how we all worked together to make sure he was comfortable at the end and how we were all together to support him, Mom, and each other. I think we were a really great team and all pulled together to make all the arrangements for the memorial gathering and the funeral mass. Everyone was very respectful and considerate of each other and worked really hard to make it a tribute to Dad. It was a real family and team effort that included the in-laws and the grandchildren. I don't know how we would have accomplished all that we did without everyone's efforts. I have learned a lot from him and feel blessed to be in a large caring family. Love, Mary Lou