It's Friday, May 28, 2010. It's been one year since I watched the love of my life slip away from me. I've been dreading this day for weeks now, but I'm starting to learn the anticipation of the event is actually worse than the event itself. Today has actually been a pretty great day. I think it's a day that Jason would've loved since...well... it was all about him. LOL I'm kidding. But seriously, it was a good day.
After breakfast, Jerrod and I went to the cemetery for some private time. It was there that I had my "big breakdown" for the day. Walking up to his gravestone, a wave of sadness came over me. As I drew nearer, the tears just started to fall. I walked to the back of the stone where Jason's name is engraved, I sat down in the grass, and I just cried. I touched his name...retracing it with my fingers...Jason Andrew Harmon...and then I put my hand on the date...May 28, 2009. A date that forever changed my life.
I sat there for a few minutes and continued to touch his name, cry, and tell him how much I miss & still love him. Jerrod was so sweet to walk around and give me a few minutes to myself. I stood up as he walked back over, and we hugged in front of the stone. I expressed how incredible it was to me that the pain was just as great one year later as it was the day it happened. It blows my mind that in a year it's never lessened...not that I really expected it to. We stood there and cried together for a minute before I headed back to the car to give him some time alone.
A few minutes later, we were on our way to Jason's parent's house where we remained for the majority of the day. We sat outside on their beautiful deck enjoying this amazing weather. We sat and talked about Jason, remembering the final days...but not the sad stuff. We remembered the funny things, the jokes, the comments...the things that made us laugh. There were a few tears here and there, but it really felt good to laugh. Later in the afternoon, the four of us headed back to the cemetery to mark the event together. A few more tears, but there was more laughter, too.
Jason's friends John-Michael and his wife Heather drove down from New Hampshire to meet us for dinner. John-Michael had been there with us on Jason's final day last year, so we were so happy to get to spend the evening with them on this special day. Dinner was fantastic, and so was the company. More stories, more laughter... it really made for the perfect ending to a great day of memories.
On top of all of that, (as of this writing) our "Donate On 28" campaign for Team Jason helped land us another $3,900! Combined with our total, that gives Team Jason $11,900 so far this year. That's already $1,000 more than what we raised last year following his death. Absolutely INCREDIBLE!
Jason would've been proud.
Friday, May 28, 2010
May 28, 2009
It's Thursday, May 28, 2009.
4:45am: I woke up after hearing some moaning coming from the living/dining room. It was Jason, but it didn't sound like he was in pain. Then, there was a knock at my door. It was Brenda, the hospice nurse who had been staying overnight. She asked me if I could come help her shift Jason to one side so she could do something. I jumped out of bed, ran to the bathroom, and then ran to Jason's bedside.
4:55am: We finished what she said she needed to do, and rolled Jason back on his back. I noticed something about his eyes, though...something not right. They were half open, sort of, and all I could see was white...as if his eyes had rolled back. I also noticed that his breathing had changed, becoming more shallow. He was reaching for every breath. I looked at Brenda and asked "Is this happening now?" She said "Yes, I think so." I immediately started screaming for Jason's parents to wake up and get to the bedside as quick as possible. Jason made it very clear that he wanted to go with me on one side and them on the other...and I was determined to make that happen (whether he was aware of it or not).
5:00am: After a couple minutes of screaming, his parents came out of the guest bedroom and ran over to Jason. I was already crying, and didn't need to say much for them to figure out what was happening. We each took our positions - I was holding his left hand in mine, and the two of them held his right hand. I waited a beat for them to say something, but no one spoke. The only sound we heard was his breathing which was becoming more shallow and hollow. I began to speak - summoning whatever strength I had left in me. "Jason, it's time to go. You need to go. You need to let go. Don't worry about us. We're going to be just fine. You need to release yourself. Let the pain go away. Just let go, sweetheart, it's ok to let go." I just kept saying that over and over again. Finally, his parents both said something, reassuring him as I had been doing. We told him how much we loved him, how much we would miss him, but it was time to go.
For five minutes, we stood there caressing his hands, his face, talking to him. With each passing minute, his breathing got slower and slower. Each time one of us said "It's ok to let go", more time would pass between breaths...
5:06am: Jason struggled for a breath. He held it in, and then a long exhale...making a sound like nothing I've ever heard. It's a sound I will never forget. And then....silence. No movement. No breathing. Nothing. At that moment, I let out a cry... and all of a sudden, he took another breath. But just one, and again, a long exhale. I held my breath at the same time. Silence.
Jason was gone.
No one spoke for a minute or so, and then Brenda - who had been using a stethoscope to listen to Jason's heart rhythm looked up at us and said "I'm so sorry." His parents and I burst into tears...the two of them hugging, and then the three of us. We broke away...stood there staring at Jason's body - now lying there without his spirit inside.
I broke away to begin making the phone calls that needed to be made. I called my parents. Then I called his friends Jerrod, Rob, Mike, and John-Michael. Meanwhile, Brenda had already called in and reported the death and asked for the funeral home to come and get him. Luckily, that didn't happen for a couple more hours. It was enough time for the other four guys and my parents to arrive at the house and pay their respects. We each took turns sitting by his side, holding his hand....caressing his face. A few times, I even kissed his forehead...and once, his lips. He was already so cold.
After 7am, the funeral home arrived to take him away. They entered the house and asked everyone to leave. They recommend that because seeing what they do can be quite traumatic for grieving families. I didn't care. I had to stay there to make sure he was treated right. I never left his side before, and I wasn't going to start now. I watched as they lifted his body off the hospital bed and placed him (sheet, clothes, and all) on their gurney. I watched as they drew an ugly green blanket over his feet, legs, torso, and then finally his face. While everyone else waited outside, I watched as they wheeled the gurney out the front door and down the front steps. I ran outside and watched as they took the man of my dreams, the love of my life...and hoisted his body into their van. I stood there, crying, screaming at times...and watched as they drove away...down the street...away from me...away from everyone who loved him.
It was done.
Jason was gone.
When I first started going to therapy right after Jason was diagnosed, my counselor gave me a book to read called "Final Gifts". It was written by two hospice nurses, and it detailed the final days of many patients they cared for. It talked about how the dying will choose when, where, and who they want present when they cross over. I fully believe that book gave me the strength to know what to do when the time came. Jason's moaning that morning was his way of saying "Hello! This is happening, and I need you all here." I later confirmed that with Brenda...who confided that she really didn't need my help. She only woke me because she knew we were only minutes away.
The rest of the day was spent making an obscene number of phone calls, writing emails, and setting up the memorial service which was held two days later. That night, we all went out to dinner...and it felt good to get out of the house for a bit. While we ate, we shared stories about Jason, reminisced about the things that made us laugh. In particular, we joked about one of his favorite movies - Drop Dead Gorgeous. So, when we got back to the house, we decided to pop the movie in and watch. It felt good to laugh...knowing that he was right there laughing with us.
It's now been on year since that incredibly awful day. And I can honestly say, it hurts just as much now as it did the day it happened. May 28th will forever be a day of sadness for me. Not only is it the day that cancer entered our lives, it is now also the day that Jason left our lives. Physically left our lives. Spiritually, he remains very much apart of our lives. And for that, I'm eternally grateful.
4:45am: I woke up after hearing some moaning coming from the living/dining room. It was Jason, but it didn't sound like he was in pain. Then, there was a knock at my door. It was Brenda, the hospice nurse who had been staying overnight. She asked me if I could come help her shift Jason to one side so she could do something. I jumped out of bed, ran to the bathroom, and then ran to Jason's bedside.
4:55am: We finished what she said she needed to do, and rolled Jason back on his back. I noticed something about his eyes, though...something not right. They were half open, sort of, and all I could see was white...as if his eyes had rolled back. I also noticed that his breathing had changed, becoming more shallow. He was reaching for every breath. I looked at Brenda and asked "Is this happening now?" She said "Yes, I think so." I immediately started screaming for Jason's parents to wake up and get to the bedside as quick as possible. Jason made it very clear that he wanted to go with me on one side and them on the other...and I was determined to make that happen (whether he was aware of it or not).
5:00am: After a couple minutes of screaming, his parents came out of the guest bedroom and ran over to Jason. I was already crying, and didn't need to say much for them to figure out what was happening. We each took our positions - I was holding his left hand in mine, and the two of them held his right hand. I waited a beat for them to say something, but no one spoke. The only sound we heard was his breathing which was becoming more shallow and hollow. I began to speak - summoning whatever strength I had left in me. "Jason, it's time to go. You need to go. You need to let go. Don't worry about us. We're going to be just fine. You need to release yourself. Let the pain go away. Just let go, sweetheart, it's ok to let go." I just kept saying that over and over again. Finally, his parents both said something, reassuring him as I had been doing. We told him how much we loved him, how much we would miss him, but it was time to go.
For five minutes, we stood there caressing his hands, his face, talking to him. With each passing minute, his breathing got slower and slower. Each time one of us said "It's ok to let go", more time would pass between breaths...
5:06am: Jason struggled for a breath. He held it in, and then a long exhale...making a sound like nothing I've ever heard. It's a sound I will never forget. And then....silence. No movement. No breathing. Nothing. At that moment, I let out a cry... and all of a sudden, he took another breath. But just one, and again, a long exhale. I held my breath at the same time. Silence.
Jason was gone.
No one spoke for a minute or so, and then Brenda - who had been using a stethoscope to listen to Jason's heart rhythm looked up at us and said "I'm so sorry." His parents and I burst into tears...the two of them hugging, and then the three of us. We broke away...stood there staring at Jason's body - now lying there without his spirit inside.
I broke away to begin making the phone calls that needed to be made. I called my parents. Then I called his friends Jerrod, Rob, Mike, and John-Michael. Meanwhile, Brenda had already called in and reported the death and asked for the funeral home to come and get him. Luckily, that didn't happen for a couple more hours. It was enough time for the other four guys and my parents to arrive at the house and pay their respects. We each took turns sitting by his side, holding his hand....caressing his face. A few times, I even kissed his forehead...and once, his lips. He was already so cold.
After 7am, the funeral home arrived to take him away. They entered the house and asked everyone to leave. They recommend that because seeing what they do can be quite traumatic for grieving families. I didn't care. I had to stay there to make sure he was treated right. I never left his side before, and I wasn't going to start now. I watched as they lifted his body off the hospital bed and placed him (sheet, clothes, and all) on their gurney. I watched as they drew an ugly green blanket over his feet, legs, torso, and then finally his face. While everyone else waited outside, I watched as they wheeled the gurney out the front door and down the front steps. I ran outside and watched as they took the man of my dreams, the love of my life...and hoisted his body into their van. I stood there, crying, screaming at times...and watched as they drove away...down the street...away from me...away from everyone who loved him.
It was done.
Jason was gone.
When I first started going to therapy right after Jason was diagnosed, my counselor gave me a book to read called "Final Gifts". It was written by two hospice nurses, and it detailed the final days of many patients they cared for. It talked about how the dying will choose when, where, and who they want present when they cross over. I fully believe that book gave me the strength to know what to do when the time came. Jason's moaning that morning was his way of saying "Hello! This is happening, and I need you all here." I later confirmed that with Brenda...who confided that she really didn't need my help. She only woke me because she knew we were only minutes away.
The rest of the day was spent making an obscene number of phone calls, writing emails, and setting up the memorial service which was held two days later. That night, we all went out to dinner...and it felt good to get out of the house for a bit. While we ate, we shared stories about Jason, reminisced about the things that made us laugh. In particular, we joked about one of his favorite movies - Drop Dead Gorgeous. So, when we got back to the house, we decided to pop the movie in and watch. It felt good to laugh...knowing that he was right there laughing with us.
It's now been on year since that incredibly awful day. And I can honestly say, it hurts just as much now as it did the day it happened. May 28th will forever be a day of sadness for me. Not only is it the day that cancer entered our lives, it is now also the day that Jason left our lives. Physically left our lives. Spiritually, he remains very much apart of our lives. And for that, I'm eternally grateful.
Thursday, May 27, 2010
May 27, 2009
It's Wednesday, May 27, 2009. I woke up early again this morning after hearing Jason moaning from the other room. I laid in bed for a minute to listen and see if he was truly in distress, and after hearing his dad's voice, I got up to go check on things. Jason was writhing around in the hospital bed, scrunching his face in pain. But this didn't seem like the normal pain he had been experiencing in recent days and weeks. This was agony. He was in extreme pain.
I immediately got on the phone to the hospice nurse (mind you, just yesterday we had practically begged for 24 hour care and were told it wasn't critical enough yet) to get her take on what we should do. She instructed me to retrieve the morphine from the refrigerator and administer a few drops. It was the strangest thing, though... when I got back to Jason's bedside with the medication, he quite literally panicked when he saw me with it. I'm not sure what he thought it was, but his dad and I had to stop and calm him down and explain that it was going to help him. After a few minutes, he relaxed a bit and allowed me to drop the drug into his mouth.
An hour later, the pain was worse. The morphine didn't help, so I called the nurse again. Again I asked for her to rush over, that a professional needed to handle this. Again she told me to give him two more drops of the morphine. I complied, and after another hour, things were still getting worse. This time, I called the "case supervisor" and all but threatened her life if someone wasn't at the house in a matter of minutes. I don't often do this, but I threw my job in her face and explained that she was "fucking with the wrong investigator" and that she "better fix this situation fast" or she'd "find Vitas and its incompetance plastered on the 10:00 news".
Another hour later, we had a team at the house, and Jason was placed on 24 hour care. They also administered another pain medication which seemed to work. Jason stopped moaning, and was able to relax and fall back asleep. So, now we were staffed with a home health-care worker all day, which allowed us to relax a bit more and spend time talking to Jason rather than trying to fix the problem.
After the morning drama, the afternoon was pretty quiet. By now, Jason was sleeping most of the time. It was getting harder to wake him, and when we were able to, he didn't stay lucid for very long. He was also unable to talk or more very much. It was almost as if he was becoming paralyzed as death took hold of his body. A few more visitors stopped by that evening including our favorite nurse, Leah, from Baylor. She brought Jason a Frosty from Wendys...which we actually used to help administer some medications, since he was now having trouble swallowing. Jason loved Leah so much, and you could tell because he actually became more aware while she was there. He did his "Oh hi!" thing to her several times, which made us all laugh. Even like this, he was still so cute.
I walked Leah out to her car a little while later, and she told me she thought it would be over by the weekend. She told me that he was very close, and that we needed to stay close by. I'm so glad we had someone like Leah to hold our hands through all of this. It made things so much easier to digest and handle knowing we were getting the best advice. I hugged her goodbye and told her I would call her after it happened.
Our night-time hospice nurse arrived a little earlier and had settled in by the time Leah left. Jason hadn't woken up for several hours, and by midnight, we all decided we should get some sleep. Like the previous night, I sat next to him for a minute before trying to wake him. This time, though...he didn't wake up. I didn't push, instead, I kissed his lips, said "I love you so much", and turned to go to bed.
Only Hours Left
I immediately got on the phone to the hospice nurse (mind you, just yesterday we had practically begged for 24 hour care and were told it wasn't critical enough yet) to get her take on what we should do. She instructed me to retrieve the morphine from the refrigerator and administer a few drops. It was the strangest thing, though... when I got back to Jason's bedside with the medication, he quite literally panicked when he saw me with it. I'm not sure what he thought it was, but his dad and I had to stop and calm him down and explain that it was going to help him. After a few minutes, he relaxed a bit and allowed me to drop the drug into his mouth.
An hour later, the pain was worse. The morphine didn't help, so I called the nurse again. Again I asked for her to rush over, that a professional needed to handle this. Again she told me to give him two more drops of the morphine. I complied, and after another hour, things were still getting worse. This time, I called the "case supervisor" and all but threatened her life if someone wasn't at the house in a matter of minutes. I don't often do this, but I threw my job in her face and explained that she was "fucking with the wrong investigator" and that she "better fix this situation fast" or she'd "find Vitas and its incompetance plastered on the 10:00 news".
Another hour later, we had a team at the house, and Jason was placed on 24 hour care. They also administered another pain medication which seemed to work. Jason stopped moaning, and was able to relax and fall back asleep. So, now we were staffed with a home health-care worker all day, which allowed us to relax a bit more and spend time talking to Jason rather than trying to fix the problem.
After the morning drama, the afternoon was pretty quiet. By now, Jason was sleeping most of the time. It was getting harder to wake him, and when we were able to, he didn't stay lucid for very long. He was also unable to talk or more very much. It was almost as if he was becoming paralyzed as death took hold of his body. A few more visitors stopped by that evening including our favorite nurse, Leah, from Baylor. She brought Jason a Frosty from Wendys...which we actually used to help administer some medications, since he was now having trouble swallowing. Jason loved Leah so much, and you could tell because he actually became more aware while she was there. He did his "Oh hi!" thing to her several times, which made us all laugh. Even like this, he was still so cute.
I walked Leah out to her car a little while later, and she told me she thought it would be over by the weekend. She told me that he was very close, and that we needed to stay close by. I'm so glad we had someone like Leah to hold our hands through all of this. It made things so much easier to digest and handle knowing we were getting the best advice. I hugged her goodbye and told her I would call her after it happened.
Our night-time hospice nurse arrived a little earlier and had settled in by the time Leah left. Jason hadn't woken up for several hours, and by midnight, we all decided we should get some sleep. Like the previous night, I sat next to him for a minute before trying to wake him. This time, though...he didn't wake up. I didn't push, instead, I kissed his lips, said "I love you so much", and turned to go to bed.
Only Hours Left
Wednesday, May 26, 2010
A Funny Thing Happened On The Way To Therapy
I'm a firm believer that those who have "crossed over" can give us signs that they're still around us, seeing everything that goes on. I've talked about a few of those instances in previous blogs. Today - a funny thing happened on the way to therapy.
I was extremely late leaving work, and I was in a terrible rush. Naturally, that meant that there was a lot of traffic which also leads to frustration and annoyance. I began fiddling around with my phone, the radio, etc and wasn't really paying attention to what was in front of me. I don't know how long it was there, but in one instant, I looked up and saw it.
Vitas was the name of the hospice organization we used to help take care of Jason. It's a name that - even a year later - I'm not very happy seeing. The truck that came to deliver the hospital bed & supplies had the name plastered in big font on the side of the truck...and I remember watching the truck drive away after they had picked up all the equipment after Jason died. I haven't seen another Vitas truck since that day...until tonight.
I looked up after fidgeting with my phone and my jaw dropped. There in front of me was a Vitas truck. My first instinct was to cry. But, instead, I began laughing. I laughed because I knew it was a joke sent by Jason to make me laugh. Of all the days to see that truck (one year to the day that it arrived on Jason's driveway to drop off the bed, etc)...I knew it was Jason's way of showing me that he's still here with me, that we're still in this together.
I was extremely late leaving work, and I was in a terrible rush. Naturally, that meant that there was a lot of traffic which also leads to frustration and annoyance. I began fiddling around with my phone, the radio, etc and wasn't really paying attention to what was in front of me. I don't know how long it was there, but in one instant, I looked up and saw it.
Vitas was the name of the hospice organization we used to help take care of Jason. It's a name that - even a year later - I'm not very happy seeing. The truck that came to deliver the hospital bed & supplies had the name plastered in big font on the side of the truck...and I remember watching the truck drive away after they had picked up all the equipment after Jason died. I haven't seen another Vitas truck since that day...until tonight.
I looked up after fidgeting with my phone and my jaw dropped. There in front of me was a Vitas truck. My first instinct was to cry. But, instead, I began laughing. I laughed because I knew it was a joke sent by Jason to make me laugh. Of all the days to see that truck (one year to the day that it arrived on Jason's driveway to drop off the bed, etc)...I knew it was Jason's way of showing me that he's still here with me, that we're still in this together.
May 26, 2009
It's Tuesday, May 26, 2009. I was woken up early by some movement in the bed. I opened my eyes to see Jason trying to get out of bed. I asked him what he was doing and he said he was trying to go to the bathroom. I jumped out of bed and helped him up, walked him to the toilet, sat him down, and then waited at the door. He hadn't been to the bathroom in days, and I didn't expect that he'd be doing anything now...but it's what he wanted.
I peeked through the crack in the door and saw him struggling to sit up. After a few minutes, he looked like he was having trouble, so I went in to help him up. There was nothing in the toilet, but he didn't notice and flushed anyway. I got him back to bed, but felt something hit my arm. It was blood. My first thought was another nose bleed, but I looked and he was fine. I turned and looked at the bathroom and there was a trail of blood back to the bed. I panicked running my hands all over his body trying to find the source until I came to the IV line still in his left arm. Blood was literally shooting from the entry point onto him, onto me, and onto the bed. I threw him on his back and jerked his arm into the air which stopped the spurting. I screamed for his parents to wake up and come in to help me. We got a towel on it and applied pressure while I called the nurse.
We ended up having to call the paramedics who were there in minutes. They were able to stop the bleeding and wrapped his arm to keep it from bursting again. It seems that when I picked Jason up off the toilet, I must've grabbed his arm in an awkward way and ruptured the IV line. It was a scary sight - especially having to call the paramedics. It was at that point that I knew we needed more help from hospice. I spent the next several hours screaming my way through different hospice workers before finally getting some movement. They'd be delivering a hospital bed and other supplies later that afternoon.
After we got everything cleaned up, we got Jason out to the living room where he laid down on the couch. His parents and I, in the meantime, had a little conference in the other room where we discussed the difficult topic of planning the end. Jason wanted to be cremated, so we needed to line up the funeral home, find an urn, etc. They were going to go that afternoon to set all that up. I felt so bad for them...in this strange city they didn't know having to go to a funeral home they knew nothing about to deal with the final arrangements for their only son. It was just an incredibly sad situation.
While they were gone, hospice arrived and set up the hospital bed. We also got a wheelchair, and a few other supplies. We also learned that we'd be getting more help - in the form of a home health aide...basically someone to help lift him up, clean him, etc. That was a relief...after some very frustrating moments trying to get the hospice company to respond to our pleas. We really wanted 24 hour care, but were told the situation was not critical enough for that. As soon as the bed was set up, Jason wanted to get in it. We helped him up, shuffled him over and sat him down. He never got out of that bed again.
Later that evening, a group of Jason's friends came by to bring dinner (even though we were still overrun with food) and spend some quality time with him. By now, though, Jason was in and out of it quite frequently. So, instead, we spent the night hearing amazing and hilarious stories about him while he slept. Every once in a while, he'd wake up, smile, and say "Oh hi!" to someone who addressed him. It was so cute the way he said it, and made everyone's mood a little lighter. That is until it was time for them to say goodbye. There were lots of tears, hugs, and kisses. Everyone knew this would be the last time they saw him alive. Standing by watching these first set of goodbyes was incredibly gut-wrenching and only made me dread the final moment when I had to do the same.
I wanted to stay up with Jason in the living room where the hospital bed was, but his dad insisted that I get some sleep. He wanted to spend time with Jason, and I wasn't about to deny him that. So, I went over to the bed, sat down next to Jason and held his hand. Watching him sleep, so peacefully...it actually made me smile. I knew his pain would be over soon, and for that I was thankful. I squeezed his hand and said his name. He opened his eyes, and I looked directly into them. I leaned in and kissed him...he kissed back...and I told him I loved him. He said "I love you too baby" before closing his eyes again. It was the last time I ever heard him say that.
Two Days Left
I peeked through the crack in the door and saw him struggling to sit up. After a few minutes, he looked like he was having trouble, so I went in to help him up. There was nothing in the toilet, but he didn't notice and flushed anyway. I got him back to bed, but felt something hit my arm. It was blood. My first thought was another nose bleed, but I looked and he was fine. I turned and looked at the bathroom and there was a trail of blood back to the bed. I panicked running my hands all over his body trying to find the source until I came to the IV line still in his left arm. Blood was literally shooting from the entry point onto him, onto me, and onto the bed. I threw him on his back and jerked his arm into the air which stopped the spurting. I screamed for his parents to wake up and come in to help me. We got a towel on it and applied pressure while I called the nurse.
We ended up having to call the paramedics who were there in minutes. They were able to stop the bleeding and wrapped his arm to keep it from bursting again. It seems that when I picked Jason up off the toilet, I must've grabbed his arm in an awkward way and ruptured the IV line. It was a scary sight - especially having to call the paramedics. It was at that point that I knew we needed more help from hospice. I spent the next several hours screaming my way through different hospice workers before finally getting some movement. They'd be delivering a hospital bed and other supplies later that afternoon.
After we got everything cleaned up, we got Jason out to the living room where he laid down on the couch. His parents and I, in the meantime, had a little conference in the other room where we discussed the difficult topic of planning the end. Jason wanted to be cremated, so we needed to line up the funeral home, find an urn, etc. They were going to go that afternoon to set all that up. I felt so bad for them...in this strange city they didn't know having to go to a funeral home they knew nothing about to deal with the final arrangements for their only son. It was just an incredibly sad situation.
While they were gone, hospice arrived and set up the hospital bed. We also got a wheelchair, and a few other supplies. We also learned that we'd be getting more help - in the form of a home health aide...basically someone to help lift him up, clean him, etc. That was a relief...after some very frustrating moments trying to get the hospice company to respond to our pleas. We really wanted 24 hour care, but were told the situation was not critical enough for that. As soon as the bed was set up, Jason wanted to get in it. We helped him up, shuffled him over and sat him down. He never got out of that bed again.
Later that evening, a group of Jason's friends came by to bring dinner (even though we were still overrun with food) and spend some quality time with him. By now, though, Jason was in and out of it quite frequently. So, instead, we spent the night hearing amazing and hilarious stories about him while he slept. Every once in a while, he'd wake up, smile, and say "Oh hi!" to someone who addressed him. It was so cute the way he said it, and made everyone's mood a little lighter. That is until it was time for them to say goodbye. There were lots of tears, hugs, and kisses. Everyone knew this would be the last time they saw him alive. Standing by watching these first set of goodbyes was incredibly gut-wrenching and only made me dread the final moment when I had to do the same.
I wanted to stay up with Jason in the living room where the hospital bed was, but his dad insisted that I get some sleep. He wanted to spend time with Jason, and I wasn't about to deny him that. So, I went over to the bed, sat down next to Jason and held his hand. Watching him sleep, so peacefully...it actually made me smile. I knew his pain would be over soon, and for that I was thankful. I squeezed his hand and said his name. He opened his eyes, and I looked directly into them. I leaned in and kissed him...he kissed back...and I told him I loved him. He said "I love you too baby" before closing his eyes again. It was the last time I ever heard him say that.
Two Days Left
Tuesday, May 25, 2010
May 25, 2009
It's Monday, May 25, 2009. It's Memorial Day, and it's the day when things really started to take a turn. As I stated yesterday, I normally spend time with my family on Sundays, but this week was different. Because of the holiday, I had made plans to attend a family bar-b-q at my parents house, and was very much looking forward to getting some time in the pool. I needed to relax.
Jason woke up in pain that morning... a fair amount of pain. He always told me he was never afraid of dying. The only thing he feared was the pain. He did not want to die in pain. So, naturally, when I saw that he was having such a hard time, I wanted to do whatever I could to fix it. He was also continuing to have frequent nose-bleeds, and I knew he desperately needed an infusion of platelets.
Once again, I called our nurse/friend at the hospital and begged to bring him in for some quick treatment. She finally agreed, and the plan was set in motion. We helped Jason out to the car and then piled in and headed to the hospital. Jason was so weak by that point, he was really starting to have trouble walking. While enroute to the hospital, I called ahead and asked them to meet us downstairs with a wheelchair. Susan & Kirsten - two of our absolute favorites - met us at the valet entrance. They helped Jason out and whisked him upstairs to get started while the rest of us parked.
Back on the 5th floor, Jason chose to lay down and selected a room with a bed instead of the regular "chaired" rooms. They hooked him up to fluids, and got the platelets ready to go. But shortly after we arrived, Jason began feeling some intense pain. The doctor was called and ordered IV pain meds, so we knew we were going to be there for a while. At first, I decided I wouldn't go to my parents house, but after his parents - and even he - insisted I go, I decided I could use a couple hours away. I waited until the pain meds kicked in...when I could visibly see that Jason was beginning to relax before I kissed him, squeezed his hand, and then left.
I made it to the car before I let the tears flow. I cried the entire drive to my parents while also catching up on phone calls and updating those who needed to be updated. At my parents, I was able to relax a little and spend some quality time in the pool. I stayed there for a few hours, and after eating, I packed it up and headed back to the house. Jason and the crew had just arrived shortly before I did, and I could tell the mix of fluids, platelets, and pain meds had helped. Jason was almost like himself again, but after a couple more hours, that quickly faded.
By nighttime, he was having a considerable amount of trouble getting up, standing, and even walking. We had to walk with him, someone in front and someone in back to make sure he didn't fall. Jason's humor was still in tact, though. At one point as we were shuffling along the floor to the kitchen, he looked up into my eyes and smiled and said "Look babe, we're dancing." We laughed about that together. We had started talking to hospice about beginning more regular care (at this point, they were only checking in one time a day) because we felt that things were getting way beyond our capabilities. However, they didn't feel like it had reached that point and told us to hang in there. Whatever.
We got Jason to the bedroom and decided to put him on my side of the bed which was closest to the bathroom. He really hadn't gone to the bathroom since Saturday, but we thought in case he had to, this way we wouldn't have to walk him all the way across the room. So, we switched sides. I got him settled and then climbed into bed. He was having a lucid moment and we were able to talk a little. I asked him again if he was scared, and he said no. Again, just of the pain. He apologized for putting me through all of this, a statement that made me nudge him angrily. He told me how much he loved me, and I echoed while telling him how much he's changed my life. It was an amazing moment, something I realized later a lot of people in our situation don't get. G-d was giving us our chance to say everything we needed to say...and we did. It turns out this would be the last night we'd be in bed together...forever.
Three Days Left
Jason woke up in pain that morning... a fair amount of pain. He always told me he was never afraid of dying. The only thing he feared was the pain. He did not want to die in pain. So, naturally, when I saw that he was having such a hard time, I wanted to do whatever I could to fix it. He was also continuing to have frequent nose-bleeds, and I knew he desperately needed an infusion of platelets.
Once again, I called our nurse/friend at the hospital and begged to bring him in for some quick treatment. She finally agreed, and the plan was set in motion. We helped Jason out to the car and then piled in and headed to the hospital. Jason was so weak by that point, he was really starting to have trouble walking. While enroute to the hospital, I called ahead and asked them to meet us downstairs with a wheelchair. Susan & Kirsten - two of our absolute favorites - met us at the valet entrance. They helped Jason out and whisked him upstairs to get started while the rest of us parked.
Back on the 5th floor, Jason chose to lay down and selected a room with a bed instead of the regular "chaired" rooms. They hooked him up to fluids, and got the platelets ready to go. But shortly after we arrived, Jason began feeling some intense pain. The doctor was called and ordered IV pain meds, so we knew we were going to be there for a while. At first, I decided I wouldn't go to my parents house, but after his parents - and even he - insisted I go, I decided I could use a couple hours away. I waited until the pain meds kicked in...when I could visibly see that Jason was beginning to relax before I kissed him, squeezed his hand, and then left.
I made it to the car before I let the tears flow. I cried the entire drive to my parents while also catching up on phone calls and updating those who needed to be updated. At my parents, I was able to relax a little and spend some quality time in the pool. I stayed there for a few hours, and after eating, I packed it up and headed back to the house. Jason and the crew had just arrived shortly before I did, and I could tell the mix of fluids, platelets, and pain meds had helped. Jason was almost like himself again, but after a couple more hours, that quickly faded.
By nighttime, he was having a considerable amount of trouble getting up, standing, and even walking. We had to walk with him, someone in front and someone in back to make sure he didn't fall. Jason's humor was still in tact, though. At one point as we were shuffling along the floor to the kitchen, he looked up into my eyes and smiled and said "Look babe, we're dancing." We laughed about that together. We had started talking to hospice about beginning more regular care (at this point, they were only checking in one time a day) because we felt that things were getting way beyond our capabilities. However, they didn't feel like it had reached that point and told us to hang in there. Whatever.
We got Jason to the bedroom and decided to put him on my side of the bed which was closest to the bathroom. He really hadn't gone to the bathroom since Saturday, but we thought in case he had to, this way we wouldn't have to walk him all the way across the room. So, we switched sides. I got him settled and then climbed into bed. He was having a lucid moment and we were able to talk a little. I asked him again if he was scared, and he said no. Again, just of the pain. He apologized for putting me through all of this, a statement that made me nudge him angrily. He told me how much he loved me, and I echoed while telling him how much he's changed my life. It was an amazing moment, something I realized later a lot of people in our situation don't get. G-d was giving us our chance to say everything we needed to say...and we did. It turns out this would be the last night we'd be in bed together...forever.
Three Days Left
Monday, May 24, 2010
May 24, 2009
It's Sunday, May 24, 2009. Normally on Sundays, I'd be leaving Jason's mid afternoon to go spend time with my family, but on this Sunday, I'm staying put. Jason's best friend Jerrod is coming by later with his mother. And, there's a new issue we're dealing with. Nose-bleeds.
When Jason's platelet level gets low, he starts getting nose-bleeds. Shortly after we woke up and moved into the living room they started to come. We'd get it to stop bleeding for a few minutes, and then out of nowhere it would start again. I put a call into our favorite nurse at the hospital - someone we'd become very close to - and asked if we needed could come in and get him an infusion of platelets. She told me that it really wouldn't do much good and to just keep him home and take care of him as best we could. She was also a little surprised that hospice wasn't there to help us.
I put a call into the hospice representative and discovered that no one really knew what was going on with Jason's case. It was the first of many screw-ups during our journey through hospice. Either way, we were there at home, which is what Jason wanted, and we were doing the best we could. Jerrod and his mother arrived after lunch, and Jason tried his best to stay a part of the conversation. But more often than before, he was beginning to space out. He would join the conversation, and then midway through a sentence, he'd stop and glass over. It was as if he had fallen asleep with his eyes open.
We got through the visit with Jerrod & his mother, and Jason was visibly tired. He went to lay down in bed, and his mom went in to be with him. Shortly after Jerrod left, a few friends of mine from work showed up and surprised the hell out of me. They pulled up with a car full of food. Literally - there was enough food in there to feed an army. We were all completely blown away by my co-workers generosity. It was an incredible sight...one that brought me to tears.
The rest of the day was spent dealing with a few more nose-bleeds, but after the visit by the "Food Fairies" it was as if we were all re-energized to keep on fighting. There was a new air of hope in the house, but unfortunately, it didn't last long.
Four Days Left
When Jason's platelet level gets low, he starts getting nose-bleeds. Shortly after we woke up and moved into the living room they started to come. We'd get it to stop bleeding for a few minutes, and then out of nowhere it would start again. I put a call into our favorite nurse at the hospital - someone we'd become very close to - and asked if we needed could come in and get him an infusion of platelets. She told me that it really wouldn't do much good and to just keep him home and take care of him as best we could. She was also a little surprised that hospice wasn't there to help us.
I put a call into the hospice representative and discovered that no one really knew what was going on with Jason's case. It was the first of many screw-ups during our journey through hospice. Either way, we were there at home, which is what Jason wanted, and we were doing the best we could. Jerrod and his mother arrived after lunch, and Jason tried his best to stay a part of the conversation. But more often than before, he was beginning to space out. He would join the conversation, and then midway through a sentence, he'd stop and glass over. It was as if he had fallen asleep with his eyes open.
We got through the visit with Jerrod & his mother, and Jason was visibly tired. He went to lay down in bed, and his mom went in to be with him. Shortly after Jerrod left, a few friends of mine from work showed up and surprised the hell out of me. They pulled up with a car full of food. Literally - there was enough food in there to feed an army. We were all completely blown away by my co-workers generosity. It was an incredible sight...one that brought me to tears.
The rest of the day was spent dealing with a few more nose-bleeds, but after the visit by the "Food Fairies" it was as if we were all re-energized to keep on fighting. There was a new air of hope in the house, but unfortunately, it didn't last long.
Four Days Left
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