Where to start. . .
When I wrote last I knew we were getting close to the end. I had NO idea we were that close.
In my last post I had failed to mention that when we got home on Wednesday from the hospital, Johnny and I laid down to take a nap. When I woke up, he wasn't in bed. As a matter of fact, he wasn't even in the house. I heard him outside yelling at the dogs to get in the house. I rolled my chair out to the kitchen and found him standing in the garage trying to get Soleil to cooperate and get in the house.
"What are you doing out here?" I screamed at him.
He told me he had taken a walk back into the woods to see how in shape he was for bear hunting. He came in the house and was walking around so strongly on his own. It had been months since he had been able to walk with a solid/strong gait.
"Wow, Look at You!"
"I know, I feel great."
"Well, DON'T YOU EVER DO THAT AGAIN!!! YOU ARE BARE-FOOTED AND WHAT IF YOU WOULD HAVE FALLEN DOWN!"
"I made sure I stayed where you could see me if I was laying on the ground."
That's my Toad.
Thursday came around and I was surprised that he was showing some signs of muscle weakening and the start of the familiar confusion I had come to really hate. He was still conversational, and when Jim and Molly picked up the boys to go to Cedar Point, the boys kissed and hugged their dad. Johnny told them to go and have the best time EVER. They both left with, "I love you, Dad." being their last words as they walked out the door.
Thursday continued with the confusion worsening. By Friday, he was mostly sleeping and didn't do any talking. He would respond to me, but most of his responses were either hard to get out or not appropriate.
The hospice nurse came on Friday afternoon and did an assessment. When she was done asking him/me questions, she asked me to come into the kitchen so we could talk.
"I have just met you, so I don't know how much you want to know."
Hello, it's me, so of course I said, "Everything."
She said, "He is progressing even faster than I think you realize."
"So, the 2-3 months that Dr. Ansari said is probably pretty optimistic?"
"Making it to the end of this month is probably pretty optimistic."
Long Silence. Those little twinkly lights started to show up in my vision. Deep Breaths, Deep Breaths.
We continued to talk about comfort measures and made sure that we had everything in the house to make this possible. I asked about food and fluids. Her response was that it wasn't really necessary any more. He would soon lose his ability to swallow, and there was really no point in forcing him, which would only lead to having the food/fluids go into his lungs.
She said that soon he would lose bodily functions and may begin to get agitated easily. She gave me instructions for every scenario she could think of. She also made sure I had the Hospice number in strategic places around the house.
Wow, that was a lot to absorb. I've always considered myself a realist, but I thought she was talking about things that I had days to weeks to prepare for.
At bedtime Friday night, I told him everything the nurse had to tell me. He was pretty lucid at the time, and I think he understood most of it. I cried on his shoulder for a long time while he rubbed my shoulder. I said, "I'm losing you and there isn't any thing I can do." He said, "I'm ok. You'll be ok." I asked him again if he was scared and he replied, "Never."
I spent the rest of the night telling him how much I loved him and how happy he made my life. I told him some of my favorite stories of "us". He squeezed my hand and said, for the last time, "I love you, Babe."
He woke up Saturday and was basically in the recliner all day. He went back to bed about 4 in the after noon and started moaning and was starting to lose consciousness, intermittently. A build up of secretions had started which was making him sound like a motor boat with a weak engine. As the evening progressed, so did the secretions. By late evening I called Hospice for some direction on how to handle this level of fluid. They told me what to do and I did it. For about 10 seconds it seemed be better. Over the course of the next two hours I called twice more. I really found it hard to believe that I was struggling with this so much. I felt like I was letting him down.
At about 1 a.m. Jimmy came over (to pick up kids from Bryanna's campfire next door) and just stopped in to see how Johnny was doing. Having him with me was a gift from God. I am so glad that I wasn't alone with all that was going on. He helped me try to get Johnny comfortable by sitting up, laying down, whatever. Nothing would stop his agitation. I called Hospice again while Jimmy was here and just asked if someone would come out and check him. At this point Jimmy and I both thought he sounded like he was drowning.
Within the next couple minutes, Johnny's agitation subsided, he became still, and took two very deep breaths and then stopped breathing altogether. Jimmy and I looked at each other, and the only thing I could think to say was, "Oh, no, Jimmy."
And then his 13 month struggle had ended. While my heart broke, I thanked God for his mercy in not having Johnny linger and struggle.
It is my belief that when Johnny took his walk in the woods, that was his "sudden burst of energy" that the terminally ill seem to get. I also think this was his turning point for deciding that he wouldn't be strong enough to bear hunt.
I miss him each minute with everything I have. I loved him and he loved me. That isn't something that death takes away.
My eyelids are no longer cooperating, so I am closing for now. There is so much in my heart that I still have to share.
Quickly, here are the arrangements:
Visitation:
Thursday, 2-8 pm at Halbritter on Main St, Niles
We are encouraging people to wear their Fighting Toad shirts if they have them. It's what Johnny will be wearing!
Funeral:
Friday, 2 pm at the Hope Community Church, Lake Street, Niles
Luncheon to follow:
Niles High School Cafeteria, 17th and Eagle St, Niles
Memorial Contributions can be made to the Brian Parker Memorial Foundation.
A college fund has been established at 5/3 bank for Quinn and Jake.
God Bless us all.
Tuesday, August 10, 2010
Saturday, August 7, 2010
Not enough time . . .
Our hospice nurse, Deb, stopped yesterday to do a complete check on Johnny. She was very thorough and asked many, many questions. I liked her instantly. I think in Hospice training they must have a class on speaking calmly and quietly, but with confidence.
After her review of Johnny we went to the kitchen and she said, "I don't know you yet, so I don't know how much you want to know." I do know me, so of course I said, "Everything. And I want it straight."
"He is moving along very quickly."
Long silence followed.
"So you think the 2-3 months Dr. Ansari mentioned was generous?"
"I think making it to the end of the month may be generous."
While she was here, Johnny was still able to talk a bit and answer questions although I had to fill in the blanks of his confusion. In just one day's time, he is unresponsive, incontinent, and moans pretty much non-stop. I don't believe he is in pain, but I do give him his medications as directed by Hospice so that I know he isn't suffering. At times he is agitated, but that is usually only for a few minutes at a time. His wakeful periods are minimal.
The boys came home today from Cedar Point with Uncle Jimmy (not a Boo) and Aunt Molly. When they left on Thursday, Johnny was still able to have a decent conversation. They were devastated to walk in and see him in this condition.
We took time for the four of us to lay together in our bed and talk about what Dad is going through and how long it could possibly take for him to pass. As I have mentioned before, I feel like their childhood's have been ripped away from them. It was in their beautiful eyes and on their sad little faces today.
Quinn asked if it was wrong to want him to die soon. I told him that is was my shared prayer that if we can't keep him, then we would like God to be merciful and bring him home as quickly as possible. Jake wants him to be cremated (which is Johnny's wish as well) because he doesn't want him stuck in the ground.
Tonight I had to call Hospice to get direction for Johnny's uncontrolled secretions. His cough isn't strong enough to manage them and he was having a hard time breathing and was doing a lot of coughing in response. I gave the medicine that they provided and have noticed that over the past hour or so, he no longer sounds like a motor-boat trying to start up. His moaning is nearly constant, so I just try to whisper to him or rub his back. I don't think it helps him at all, but it helps me.
I'm trying to stay strong by meditating. Ok, not the "hippie" type of meditation or the Ashram kind, just closing my eyes and trying to find the calmest spot I can find and stay there for as long as possible. I only allow pleasant thought and beautiful images there, and I always hold Johnny's hand while I'm doing it. I truly feel him calm along with me. I don't have a mantra or anything, but just sitting still and being calm and quiet has a very positive effect on me. I plan on continuing to do this even after Johnny has passed.
Do I have a feeling at all on how long I think it will be? No, not yet. I know that he has already gone 3 days without any food/hydration. I just can't see him going on much longer, and truly it is too hard to watch my Johnny not actually be here while he is laying in our bed. I already miss him so much.
Dear God, please bring him home to you quickly.
After her review of Johnny we went to the kitchen and she said, "I don't know you yet, so I don't know how much you want to know." I do know me, so of course I said, "Everything. And I want it straight."
"He is moving along very quickly."
Long silence followed.
"So you think the 2-3 months Dr. Ansari mentioned was generous?"
"I think making it to the end of the month may be generous."
While she was here, Johnny was still able to talk a bit and answer questions although I had to fill in the blanks of his confusion. In just one day's time, he is unresponsive, incontinent, and moans pretty much non-stop. I don't believe he is in pain, but I do give him his medications as directed by Hospice so that I know he isn't suffering. At times he is agitated, but that is usually only for a few minutes at a time. His wakeful periods are minimal.
The boys came home today from Cedar Point with Uncle Jimmy (not a Boo) and Aunt Molly. When they left on Thursday, Johnny was still able to have a decent conversation. They were devastated to walk in and see him in this condition.
We took time for the four of us to lay together in our bed and talk about what Dad is going through and how long it could possibly take for him to pass. As I have mentioned before, I feel like their childhood's have been ripped away from them. It was in their beautiful eyes and on their sad little faces today.
Quinn asked if it was wrong to want him to die soon. I told him that is was my shared prayer that if we can't keep him, then we would like God to be merciful and bring him home as quickly as possible. Jake wants him to be cremated (which is Johnny's wish as well) because he doesn't want him stuck in the ground.
Tonight I had to call Hospice to get direction for Johnny's uncontrolled secretions. His cough isn't strong enough to manage them and he was having a hard time breathing and was doing a lot of coughing in response. I gave the medicine that they provided and have noticed that over the past hour or so, he no longer sounds like a motor-boat trying to start up. His moaning is nearly constant, so I just try to whisper to him or rub his back. I don't think it helps him at all, but it helps me.
I'm trying to stay strong by meditating. Ok, not the "hippie" type of meditation or the Ashram kind, just closing my eyes and trying to find the calmest spot I can find and stay there for as long as possible. I only allow pleasant thought and beautiful images there, and I always hold Johnny's hand while I'm doing it. I truly feel him calm along with me. I don't have a mantra or anything, but just sitting still and being calm and quiet has a very positive effect on me. I plan on continuing to do this even after Johnny has passed.
Do I have a feeling at all on how long I think it will be? No, not yet. I know that he has already gone 3 days without any food/hydration. I just can't see him going on much longer, and truly it is too hard to watch my Johnny not actually be here while he is laying in our bed. I already miss him so much.
Dear God, please bring him home to you quickly.
Thursday, August 5, 2010
Major Decisions
Five days in the hospital . . . Let me just say, “WOW”.
As I’ve been talking a lot about lately, Johnny’s fluid balance got the best of us once again which landed him in the ER with an admission to the Oncology floor.
Last Saturday was Matt Brawley’s (and Mrs. Brooke Brawley) wedding. Johnny was adamant that he was going to that wedding. He wouldn’t take no for an answer, and to tell you the truth I didn’t try really hard to say no.
He complained all morning about excruciating stomach pain across the middle of his abdomen. I knew he was terribly dehydrated, too. After Matt and Brooke’s beautiful wedding, I brought Johnny home and before he even got back into bed, he said, “I need to go to the hospital.”
I knew it was bad if he was telling me.
In the ER, they started him on fluids and drew labs, etc. We knew from the last abdomen CT that he had an inflamed pancreas and now we had reached full blown pancreatitis. Don’t ever wish pancreatitis on your worst enemy. It is terribly painful, and treated mostly with “gut rest” or in other words no eating or drinking.
Over the course of his admission, we reviewed his medications and pain management and have made several changes where that’s concerned. Improvements have all been working nicely.
Chemotherapy was scheduled for Monday morning, but since he was inpatient, we obviously didn’t go. Instead, Dr. Ansari came to us. We had a long heart-to-heart. Dr. Ansari explained to us that we can see on the CT that Johnny’s belly is fully affected by cancer now -- lymph nodes are getting even more involved, there is inflammation of the entire mesenteric area and his pancreas is terribly inflamed (although not yet invaded by cancer). There are now mutliple nodules in the lower lobe of his right lung and the chest lymph nodes are increasing in size and number.
We are losing the fight.
The difficult decision to stop all chemotherapy was made. Dr. Ansari said he didn’t want to go back to the infusion center to tell the girls, because they all have fallen in love with Johnny. Who could blame them?
I asked if we were still on track with the time frame he had initially told us in May, which was about 6 months. He said at this point it looks like 2-3 months, but Johnny is a strong-spirited guy and didn’t commit to a definite number.
Johnny told him that he wanted to go home and Dr. Ansari agreed and said that as soon as the pancreatitis had calmed down we could go. When that time came, he said that instead of having Johnny come back to the ER every time he needs fluids, he wanted us to go home with Hospice Care.
Hospice? Oh my God, that is for people who are dying. And my Johnny needs Hospice Care? How did that happen so soon?
We have met most of his Hospice Team, and if you’ve ever heard anyone talk of Hospice and how amazing the people are, they are right. Every encounter we have had so far has been incredible. Johnny’s comfort is the number one concern. They told me, “We are your 911 from now on. You call us day or night when you have a need. We are here for you, Johnny and the boys.” It is very calming to know I can keep Johnny here and they will come to him if he has another crisis.
Johnny is feeling much better, but still sleeps most of the time. When he wakes, he is usually talkative and jokes around. When he is listening to conversation, his eyes are closed, but he stays involved in the conversation.
Please pray really hard for the boys right now. They understand that our time is short and it is becoming so much more difficult knowing that saying a final goodbye is creeping closer daily. Quinn is wearing his emotions on his sleeve and tries so hard to be brave and strong. The two of us had a good talk/cry together last night and I know that eventually we will all be fine again. I love that he loves his dad so much and we talked about how lucky he is to have a dad that has been involved in his life from day one. His uncles will all foster his love of hunting and fishing and he is such an “old soul” that I know I will be able to lean on him on days when I feel I can’t stand on my own.
Jake tries to stay involved with his friends as much as possible and still manages to keep himself involved with Johnny, although to a less physical degree than Quinn. Jake’s network of friends and “other mothers” will make this situation more tolerable for him. I’ll also be able to lean on Jake and his humor when I am having bad days.
Together the three of us are invincible.
Lately I have been reading a lot and working on finding peace and understanding. I know I am a strong woman and will eventually (with my boys) be ok. I refuse to ask, Why me? Or Why Johnny? That just doesn’t make anyone feel any better.
I will spend the rest of Johnny’s days making it my duty and my honor to help him feel the best he possibly can.
We still love to have visitors, but I know you will all understand when I say that I have to limit the number of visitors per day/week. If you are interested in stopping by, please just give us a jingle first and we can determine if it is a good time or not. I know you will understand if it just isn’t a good day, and we will try again later. Also, please understand that sometimes we don’t answer the phone (We do not have caller ID, so we aren’t screening, I swear!). We may both be sleeping, talking, or just not in a position to carry on a conversation. Leave a message, or try another time. We want your calls! Promise!
Thanks to everyone who have asked about my legs. This I can tell you: One broken ankle sucks, add to that a broken foot and it is downright cruel. I am please with the answer to my prayers to stay home with Johnny, but struggle with how badly my physical body has let me down. Nighttime is the worst because by then the cam boots feel like I am wearing my dad’s snowmobile boots with lead weights in them. They are heavy, hot, and annoying. Especially when the Velcro sticks together and I can’t get my legs apart in the middle of the night. I’m telling you, someone should put a secret camera in my room if they want to win AFV’s $100,000 grand prize!
My multitude of thanks continues to everyone providing comfort for my family. Whether it is food, prayer, visits, whatever . . . Thank you so much.
As I’ve been talking a lot about lately, Johnny’s fluid balance got the best of us once again which landed him in the ER with an admission to the Oncology floor.
Last Saturday was Matt Brawley’s (and Mrs. Brooke Brawley) wedding. Johnny was adamant that he was going to that wedding. He wouldn’t take no for an answer, and to tell you the truth I didn’t try really hard to say no.
He complained all morning about excruciating stomach pain across the middle of his abdomen. I knew he was terribly dehydrated, too. After Matt and Brooke’s beautiful wedding, I brought Johnny home and before he even got back into bed, he said, “I need to go to the hospital.”
I knew it was bad if he was telling me.
In the ER, they started him on fluids and drew labs, etc. We knew from the last abdomen CT that he had an inflamed pancreas and now we had reached full blown pancreatitis. Don’t ever wish pancreatitis on your worst enemy. It is terribly painful, and treated mostly with “gut rest” or in other words no eating or drinking.
Over the course of his admission, we reviewed his medications and pain management and have made several changes where that’s concerned. Improvements have all been working nicely.
Chemotherapy was scheduled for Monday morning, but since he was inpatient, we obviously didn’t go. Instead, Dr. Ansari came to us. We had a long heart-to-heart. Dr. Ansari explained to us that we can see on the CT that Johnny’s belly is fully affected by cancer now -- lymph nodes are getting even more involved, there is inflammation of the entire mesenteric area and his pancreas is terribly inflamed (although not yet invaded by cancer). There are now mutliple nodules in the lower lobe of his right lung and the chest lymph nodes are increasing in size and number.
We are losing the fight.
The difficult decision to stop all chemotherapy was made. Dr. Ansari said he didn’t want to go back to the infusion center to tell the girls, because they all have fallen in love with Johnny. Who could blame them?
I asked if we were still on track with the time frame he had initially told us in May, which was about 6 months. He said at this point it looks like 2-3 months, but Johnny is a strong-spirited guy and didn’t commit to a definite number.
Johnny told him that he wanted to go home and Dr. Ansari agreed and said that as soon as the pancreatitis had calmed down we could go. When that time came, he said that instead of having Johnny come back to the ER every time he needs fluids, he wanted us to go home with Hospice Care.
Hospice? Oh my God, that is for people who are dying. And my Johnny needs Hospice Care? How did that happen so soon?
We have met most of his Hospice Team, and if you’ve ever heard anyone talk of Hospice and how amazing the people are, they are right. Every encounter we have had so far has been incredible. Johnny’s comfort is the number one concern. They told me, “We are your 911 from now on. You call us day or night when you have a need. We are here for you, Johnny and the boys.” It is very calming to know I can keep Johnny here and they will come to him if he has another crisis.
Johnny is feeling much better, but still sleeps most of the time. When he wakes, he is usually talkative and jokes around. When he is listening to conversation, his eyes are closed, but he stays involved in the conversation.
Please pray really hard for the boys right now. They understand that our time is short and it is becoming so much more difficult knowing that saying a final goodbye is creeping closer daily. Quinn is wearing his emotions on his sleeve and tries so hard to be brave and strong. The two of us had a good talk/cry together last night and I know that eventually we will all be fine again. I love that he loves his dad so much and we talked about how lucky he is to have a dad that has been involved in his life from day one. His uncles will all foster his love of hunting and fishing and he is such an “old soul” that I know I will be able to lean on him on days when I feel I can’t stand on my own.
Jake tries to stay involved with his friends as much as possible and still manages to keep himself involved with Johnny, although to a less physical degree than Quinn. Jake’s network of friends and “other mothers” will make this situation more tolerable for him. I’ll also be able to lean on Jake and his humor when I am having bad days.
Together the three of us are invincible.
Lately I have been reading a lot and working on finding peace and understanding. I know I am a strong woman and will eventually (with my boys) be ok. I refuse to ask, Why me? Or Why Johnny? That just doesn’t make anyone feel any better.
I will spend the rest of Johnny’s days making it my duty and my honor to help him feel the best he possibly can.
We still love to have visitors, but I know you will all understand when I say that I have to limit the number of visitors per day/week. If you are interested in stopping by, please just give us a jingle first and we can determine if it is a good time or not. I know you will understand if it just isn’t a good day, and we will try again later. Also, please understand that sometimes we don’t answer the phone (We do not have caller ID, so we aren’t screening, I swear!). We may both be sleeping, talking, or just not in a position to carry on a conversation. Leave a message, or try another time. We want your calls! Promise!
Thanks to everyone who have asked about my legs. This I can tell you: One broken ankle sucks, add to that a broken foot and it is downright cruel. I am please with the answer to my prayers to stay home with Johnny, but struggle with how badly my physical body has let me down. Nighttime is the worst because by then the cam boots feel like I am wearing my dad’s snowmobile boots with lead weights in them. They are heavy, hot, and annoying. Especially when the Velcro sticks together and I can’t get my legs apart in the middle of the night. I’m telling you, someone should put a secret camera in my room if they want to win AFV’s $100,000 grand prize!
My multitude of thanks continues to everyone providing comfort for my family. Whether it is food, prayer, visits, whatever . . . Thank you so much.
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