01.08.10
Friday visit.
Dad seemed to be in a constant state of discomfort today. He wore an expression of discern on his face the whole time because of it. I wish dad wasn’t going through this, but he is. I told him I probably wouldn’t go by on Saturday. I need to give him a break from seeing me. I need a day to catch up on things and I’m hoping one of my sisters will go over and stay for more than just a few hours. I’m betting I’ll end up over there in the evening. I don’t want to experience a day without dad. I’m afraid that if I don’t start letting him go it will be harder on me once he leaves.
I’ve begun to worry about dad getting bored. I know that probably sounds silly, but if I were in his situation I’d be racked with boredom. There really isn’t much on TV worth watching, and that and the radio are his only entertainment staples. I started attaching my laptop to his TV and we watched westerns on Netflix. He likes Columbo and Gunsmoke, so we’re going to do a marathon of that on Sunday. Dad tries to keep his mind clear of bad thoughts and much of what you see on TV is pretty bad. He gets extremely agitated when he sees something that is inappropriate. I’ve noticed that when he’s watching a movie he gets the chance to rest better. The surrounding silence around the movie must be peaceful to him. When he’s just resting in general people have a tendency to just talk and having to listen to conversations just wears him out.
Is it unhealthy for me to call every morning to say good morning to him and then go and stay with him during the day, then before too late in the evening call him and say good night? I feel like I’ve started a routine that he expects, and if I break the routine he’ll notice it. I’ve been doing this for almost a month now, and I’ve noticed that his voice lights up when I call him like that, maybe he needs it. I know I need it. I’m a creature of habit. Routines come easily, but are hard to get out of.
Saturday, January 9, 2010
Friday, January 8, 2010
The Hardest Thing Yet
I’ve discovered that being with someone that is dying, at least being with someone on a daily basis and having been blessed with the task of helping someone through dying, is a lot like helping them pack up their household to move away.
I’ve seen dad every day, give or take one or two, since the end of November. I’ve seen him slowly melt away, but didn’t realize it. I was given the task of getting photos together a while back to create a collage for dad’s funeral; he’s having a closed casket. As I was looking through the photos, I came across one of him from last Christmas. It was a portrait of him and mom that they had made at their church. I’ve never thought of dad as being healthy in the weight department. He’s always been 6’1 and 160 lbs. As I looked at him in the photo I noticed how golden his skin was and full his face was. I had gotten so use to seeing dad emaciated and pale that it seemed normal to me. He seemed to look the same as he did when I was fishing with him back in April of this year. So I could imagine how shocked people must be to see him when they haven’t seen him in years.
In the weeks that dad has been confined to his hospital bed I’ve always seen him in his pajamas, or a t-shirt. I’ve seen his bare back and arms and legs enough to have mental images of them, but it was something that didn’t shock me. Sure I had a very difficult time seeing dad for the first time like that, but I was able to make peace with it. I knew that his cancer was eating his calories, his nourishment. I knew that he was going to waste away. I knew, but I didn’t know what that would look like. I know now.
On Wednesday morning I helped dad with his morning routine. I emptied his Ileostomy bag, and helped him take a sponge bath. This is how the sponge bath occurred. I sat in the chair beside his bed, watching as his long hands reached into the basin to grasp and wring out a wash cloth. I watched as he slowly, clumsily, grasped the bar of soap and enfolded it in the cloth to suds up a bit. I sat beside him and held my breath while he washed his arms, and then his chest. I watched as he dipped the cloth back in the hot water and listened to the sound of the water being squeezed out of it. I tried not to gasp as dad drew his long spindly legs up to him and gently washed each one. I watched him and tried to block the images out of my head. Then dad called out to me and asked me to wash his back, so I stood up and took the cloth from his hand. He rolls over and I take in a deep breath, silently holding it in, and I dip the cloth in the warm water and then I gently apply it to his shoulders. His shoulders that look alien to me because they’re nothing more than two huge twin shields of bone that protrude out from his back. I wash them gently, then I cup his spine in my hand and I run the warm cloth gently down the length of it. I speak to him softly as I do this; I tell him I am honored to do this for him. He tells me that he is glad that I am here for him. I am not feeling anything; I am numb to all of this for the moment. I dip the cloth back in the warm water and squeeze it out. I gently wash his side, which is nothing more than his ribs protruding up and through the skin. I lovingly run the warm cloth along each one and then I dry him off and he rolls over and I do the same to the other side. Once I am done bathing him he asked me to rub a special cream on his back and pelvic area. It’s to help prevent bed sores. I didn’t hesitate and hastily made my way to get it. Dad had me turn the gas heater that is in the wall beside his bed on and close the door. It got warm fast. As dad rolled back over to his side he pulled his underwear down for me and I wasn’t prepared for what I saw. There weren’t two globes there anymore. His posterior was gone. It was nothing more than the end of a spine protruding downward. I didn’t realize what I was looking at; I still can’t bend my mind around it. Dad said mom usually wears gloves when she does this, I told him I didn’t want to wear gloves. I dipped my hand in the cream and I touched him and rubbed it in with all the love and compassion that was in my being. I gently massaged him and worked my way up over his ribs, his spine, and his shoulder blades. Even when I was through with the cream I still rubbed him. I wanted him to feel every ounce of love that I had to offer him. After a while he rolled back over onto his back and I helped him put on his pajamas. Once he was in a comfortable position, I placed a towel on his chest and I shaved him. It was difficult because his face has developed so many sharp angles, and his skin pits beneath the bones. I then gave him a haircut.
After I had finished with dad and brought him his first Ensure of the day, I went to gather my things up. It was almost noon at this point and I needed to go home. I had spent the night, so I was tired and my dogs needed me.
I still hadn’t had the full reaction to seeing my dad the way I had that morning. I was just so mentally tired that when I got home I bathed the dogs and then went to bed. I slept till 4:00 pm. When I woke up the emotional shock of seeing dad in the way that I saw him hit me. It felt like someone punched me in the stomach with all their might. I curled up in a fetal position and wept.
The next day I was ok.
I’ve discovered that I have changed through all of this. I’m a more serious person. I’m not as obsessed over every single thing that crosses my path anymore. I have slowed down; I do things with more thought and am more methodical. I have my ups and downs with this process. I often feel guilty for being so accepting of dad’s dying. I often feel like people view me as callous or indifferent because I don’t cry all the time, or at least cry when I talk to them about dad. I worry that people who don’t know me will think that because of my lack of emotion I wasn’t close to my dad. I worry that I am not handling things in a healthy way. I worry that I’m in some small way not seeing the full picture, even though I believe that I am. I am scared to think what my life will mean without dad in it. I am afraid that after dad dies, mom will not be the same mom I’ve known for the past 38 years. I’m worried that the family will disperse like seeds in the wind. Dad was the patriarch. I have found that in the entirety of my life I’ve been obsessed and curious about death. I’ve been the suicidal, dark, twisted lost soul that sang the praises of death through poetry and ramblings. In all my years though, I’ve never had an experience with death. No one I’ve loved has died. I had no image or face to put on death. I had no pain to associate with death.
I told dad that he has given me so much by allowing me to help him through this process. He has single handedly restored my self confidence, and given me a purpose in life. I have learned so much from him up to this point, and I could only hope that when my life draws to a close it is similar to his. I told him the other day that losing him will help me greatly when it comes time to losing mom. I explained to him that he has been able to talk me through difficult things and he’s explained things to me in a way that no one else could. Up to this point he has given me knowledge and experience to make it easier for mom, or anyone else in my life when it comes their time.
I’m still hanging on tight to dad and I’m afraid I’m holding on too tightly…
I’ve seen dad every day, give or take one or two, since the end of November. I’ve seen him slowly melt away, but didn’t realize it. I was given the task of getting photos together a while back to create a collage for dad’s funeral; he’s having a closed casket. As I was looking through the photos, I came across one of him from last Christmas. It was a portrait of him and mom that they had made at their church. I’ve never thought of dad as being healthy in the weight department. He’s always been 6’1 and 160 lbs. As I looked at him in the photo I noticed how golden his skin was and full his face was. I had gotten so use to seeing dad emaciated and pale that it seemed normal to me. He seemed to look the same as he did when I was fishing with him back in April of this year. So I could imagine how shocked people must be to see him when they haven’t seen him in years.
In the weeks that dad has been confined to his hospital bed I’ve always seen him in his pajamas, or a t-shirt. I’ve seen his bare back and arms and legs enough to have mental images of them, but it was something that didn’t shock me. Sure I had a very difficult time seeing dad for the first time like that, but I was able to make peace with it. I knew that his cancer was eating his calories, his nourishment. I knew that he was going to waste away. I knew, but I didn’t know what that would look like. I know now.
On Wednesday morning I helped dad with his morning routine. I emptied his Ileostomy bag, and helped him take a sponge bath. This is how the sponge bath occurred. I sat in the chair beside his bed, watching as his long hands reached into the basin to grasp and wring out a wash cloth. I watched as he slowly, clumsily, grasped the bar of soap and enfolded it in the cloth to suds up a bit. I sat beside him and held my breath while he washed his arms, and then his chest. I watched as he dipped the cloth back in the hot water and listened to the sound of the water being squeezed out of it. I tried not to gasp as dad drew his long spindly legs up to him and gently washed each one. I watched him and tried to block the images out of my head. Then dad called out to me and asked me to wash his back, so I stood up and took the cloth from his hand. He rolls over and I take in a deep breath, silently holding it in, and I dip the cloth in the warm water and then I gently apply it to his shoulders. His shoulders that look alien to me because they’re nothing more than two huge twin shields of bone that protrude out from his back. I wash them gently, then I cup his spine in my hand and I run the warm cloth gently down the length of it. I speak to him softly as I do this; I tell him I am honored to do this for him. He tells me that he is glad that I am here for him. I am not feeling anything; I am numb to all of this for the moment. I dip the cloth back in the warm water and squeeze it out. I gently wash his side, which is nothing more than his ribs protruding up and through the skin. I lovingly run the warm cloth along each one and then I dry him off and he rolls over and I do the same to the other side. Once I am done bathing him he asked me to rub a special cream on his back and pelvic area. It’s to help prevent bed sores. I didn’t hesitate and hastily made my way to get it. Dad had me turn the gas heater that is in the wall beside his bed on and close the door. It got warm fast. As dad rolled back over to his side he pulled his underwear down for me and I wasn’t prepared for what I saw. There weren’t two globes there anymore. His posterior was gone. It was nothing more than the end of a spine protruding downward. I didn’t realize what I was looking at; I still can’t bend my mind around it. Dad said mom usually wears gloves when she does this, I told him I didn’t want to wear gloves. I dipped my hand in the cream and I touched him and rubbed it in with all the love and compassion that was in my being. I gently massaged him and worked my way up over his ribs, his spine, and his shoulder blades. Even when I was through with the cream I still rubbed him. I wanted him to feel every ounce of love that I had to offer him. After a while he rolled back over onto his back and I helped him put on his pajamas. Once he was in a comfortable position, I placed a towel on his chest and I shaved him. It was difficult because his face has developed so many sharp angles, and his skin pits beneath the bones. I then gave him a haircut.
After I had finished with dad and brought him his first Ensure of the day, I went to gather my things up. It was almost noon at this point and I needed to go home. I had spent the night, so I was tired and my dogs needed me.
I still hadn’t had the full reaction to seeing my dad the way I had that morning. I was just so mentally tired that when I got home I bathed the dogs and then went to bed. I slept till 4:00 pm. When I woke up the emotional shock of seeing dad in the way that I saw him hit me. It felt like someone punched me in the stomach with all their might. I curled up in a fetal position and wept.
The next day I was ok.
I’ve discovered that I have changed through all of this. I’m a more serious person. I’m not as obsessed over every single thing that crosses my path anymore. I have slowed down; I do things with more thought and am more methodical. I have my ups and downs with this process. I often feel guilty for being so accepting of dad’s dying. I often feel like people view me as callous or indifferent because I don’t cry all the time, or at least cry when I talk to them about dad. I worry that people who don’t know me will think that because of my lack of emotion I wasn’t close to my dad. I worry that I am not handling things in a healthy way. I worry that I’m in some small way not seeing the full picture, even though I believe that I am. I am scared to think what my life will mean without dad in it. I am afraid that after dad dies, mom will not be the same mom I’ve known for the past 38 years. I’m worried that the family will disperse like seeds in the wind. Dad was the patriarch. I have found that in the entirety of my life I’ve been obsessed and curious about death. I’ve been the suicidal, dark, twisted lost soul that sang the praises of death through poetry and ramblings. In all my years though, I’ve never had an experience with death. No one I’ve loved has died. I had no image or face to put on death. I had no pain to associate with death.
I told dad that he has given me so much by allowing me to help him through this process. He has single handedly restored my self confidence, and given me a purpose in life. I have learned so much from him up to this point, and I could only hope that when my life draws to a close it is similar to his. I told him the other day that losing him will help me greatly when it comes time to losing mom. I explained to him that he has been able to talk me through difficult things and he’s explained things to me in a way that no one else could. Up to this point he has given me knowledge and experience to make it easier for mom, or anyone else in my life when it comes their time.
I’m still hanging on tight to dad and I’m afraid I’m holding on too tightly…
Thursday, January 7, 2010
Grumpy Dad and Family Therapy
When I arrived this morning mom was on her way out to go to an appointment with grandma's hospice care. She informed me, as she rushed past me, that a hospice nurse was coming out within the hour. After mom left, the nurse came pretty quickly. She checked dad’s vitals and everything looked good. She asked how his pain was on a scale of 1-10, he answered "2". After she was through I walked her out and we had a great conversation. She asked me how I was doing; I told her I was fine. I had gotten through the worst of it up to this point. I decided to tell her about my personal experience with my own chronic illness and how that helped me relate to dad now. It was a good conversation. I like her alot. After she left, dad decided he wanted his Ileostomy bag changed. He usually has his Ileostomy bag completely removed and changed once a week. I've done it a few times and it's not my favorite thing to do. Not because it makes me uncomfortable, it doesn't, it's because dad likes to supervise. When he does that he in avertedly brings my inner child to the surface.
I’ve always tried to maintain a relationship with my dad that was basically adult to adult, not parent to child. I have struggled to deal with pooled emotion that would come up when dad’s voice would take on a certain tone, or he’d use certain phrases that were always hurtful to me as a child. It’s sort of like how a dog is hit on his head or snout to be corrected. After a while every time you bring your hand up to pet the dog he flinches in expectation that you’re going to hit him. That’s sort of like pooled emotion, its things that make you flinch.
Just in case you don't know what an Ileostomy is I'll tell you. An Ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the Ileostomy and is collected in an external pouching system stuck to the skin. Ileostomy are usually sited above the groin on the right hand side of the abdomen ---- Wikipedia
So anyway there is a special disc that fits around the stoma and is glued down to your abdomen around the stoma. The disc has a circular raised lip that is designed for a pouch to snap securely onto. Then there's a clip at the end of the pouch that you unhook to drain the contents when it's needed. Sounds simple? It's not... You have to make sure that it's put on properly or it will leak. It's really not a good thing when it leaks, I'll leave it at that... Anyway we've learned by trial and error that it's best for dad to not drink Ensure before doing this change out. So the procedure of changing the bag has to be very accurate and very fast. First you gather all of the tools you need. A basin of warm water, a dye free, fragrant free all natural bar of soap, three to four wash cloths, a hair dryer, a pair of surgical scissors, surgical tape and an Ileostomy kit. Don't forget a towel in case of an accident. So once all that is together and dad is ready, you hand him a warm wet wash cloth. I’m not sure how it is with other people, but with dad you have to listen to him telling you what to do for at least 10 minutes before proceeding. Once you are ready you gently peel back the surgical tape that is on top of the attached disc. Usually it's adhered to the skin pretty bad, so you have to be very gentle. Once all of that is off you must peel the surgical tape that is attached to the disc starting from top to bottom. You want to be gentle, but at the same time you want to pull it down and over the stoma and keep whatever contents that is in the pouch, in the pouch. Then dad places his warm wash cloth over his stoma just in case it decides to "spew" and trust me, it does... Once you've got surgical gloves on you have to take a wash cloth and wet it and put some soap on it. You then proceed to clean around the stoma and remove all the glue residue and whatever else might be around it. Then you blow dry the skin to make sure it's dry. Once that is done you must have the disc ready by measuring the stoma and cutting the inner ring of the disc to fit around it. Once you've done that you have to put special glue around the ring and allow it to set a bit. Then you put the disc over the stoma, glue side down, and you smooth out the attached surgical tape onto the skin. You have to make sure it's on properly. Then you need to be fast about getting the pouch onto the disc by making sure the two raised rings meet and snap together. If the stoma spews before you get it together, well, you have to start all over... So once that's all on you put additional surgical tape around the disc base for added protection. That's it, sounds simple doesn't it. Well, it would be, but when dad is grumpy it's very difficult. I'd be grumpy too, so I understand. It does become quite exasperating though and it is very stressful.
The hospice worker brought out a baby monitor so mom can go from sleeping on the couch at night, to sleeping in her own bed. I set it up and dad tried it out. It has an emergency button on it and I’m sure the first time mom hears it go off it will scare her to death. This is the grumpy part... Dad wanted to put it somewhere other than his table, but I told him he couldn’t because it has an emergency button you have to push. He kept telling me to put it here or there and I again insisted he couldn't. Finally after a few minutes of trying to put it somewhere he wanted it he suddenly, in a very irritated voice, told me to put it back on the table because it has an emergency button on it... At this point I decided when mom got back I was going to go run errands for someone...
Later in the day a hospice counselor came by. Her name was Meredith. She sat down with us and very candidly talked about dad's dying with us. I was really glad that the subject was being broached. She wanted to know how mom was doing. Mom immediately started wiping tears. Meredith told mom that it was ok to cry, that is just what you do when you love someone. So don’t be ashamed to cry, wear the tears as you would a badge of honor. She asked her what her biggest fear was. Mom answered being alone. She married dad when she was 19 and he was 20. 44 years of marriage is a long time to be with someone and then suddenly be faced with the prospect of losing them. Meredith gave mom some ideas on how to best handle that. She told her to picture herself after dad was gone, alone in the house. She told her to let herself feel her emotions a little at a time, and eventually she’d see that it will be ok. She assured mom that she had a support system all around her. Mom is also worried about the house falling into disrepair. Dad always took care of things and mom just relied upon that. Meredith told her that if that happened she could call a plumber, or an electrician, or her son to help her find the right repair man. It was suggested that dad make a list of businesses that he used in the past with phone numbers. Mom also worried that I was going to burn out from coming over so much. I assured her that I wouldn’t, and if I did I’d take a break to recoup.
Meredith then asked me some questions. I told her I was doing fine. I told her that I was ok with dad dying, that I had made my peace with it. She asked me why I came over so much. I told her that at first it was an obsessive thing that I just had to do. I didn’t realize at the time that I was avoiding dealing with dad’s illness by being with him all the time. It wasn’t till I missed that one day, Christmas Eve, that I fell apart and was forced to grieve. She wondered if I was there more for mom than for dad. I told her I was concerned that no one, meaning my sisters, would give mom the care she needed. I felt like I had to be there for her for that reason. I thought about it afterwards and hoped it didn’t sound as bad to them as it does to me. I just have a strong sense of duty and loyalty to my parents, which is why I have taken charge of things in my own way. She asked how my two sisters were taking things. One is avoiding coming over for fear of having to grieve, and the other doesn’t come over for reason unknown to me. I know they come by once and a while and at least one of them calls once a week or so… Meredith told mom that she needed to call them and tell them that they need to come over on a certain day so she could go out to check on grandma in the nursing home, or her brother who is in the hospital, or grandpa who is at home alone. She asked me how I felt about that. I didn’t tell her I was mad at them for allowing me to shoulder all of this on my own. I didn’t tell her how much resentment I was feeling, or how I didn’t really seem to care for either one of them at the moment. I just told her it was a great idea, they needed to be here.
Meredith asked dad how he felt about things. He said he was ok. He wasn’t in a lot of pain. He said he was at peace. Meredith asked him about his childhood, she wanted to find out how he was taught to grieve. He told her the story of his grandpa who raised him. Dad told her how his grandfather had gotten sick and he pulled dad aside and told him that he was leaving and that once he was gone, well that was it, he was gone. There was no need to grieve over him. So dad said that he went to the woods that day and cried to himself and then he didn’t grieve anymore. I don’t know how old he was, but I know he was young. Every time he talks about his grandfather now he cries. There were a few other things talked about, but I don’t have total recall unfortunately, so I’m just going to leave this part of things and move on. It just ended up being a good hour long check in.
After Meredith left, mom and dad and I all felt rejuvenated. I told dad that I really enjoyed talking about things, and I hoped that we could do this weekly to see where each other was with things.
I decided that I needed to go home. I had been there almost 7 hours and I was tired. So like I always do when saying goodbye to dad, I squeezed his knee and told him I loved him and that I’d see him tomorrow. Of course I knew when I got home I’d end up calling him around 7:30, like I always do, to say good night to him.
So it was a good day.
I’ve always tried to maintain a relationship with my dad that was basically adult to adult, not parent to child. I have struggled to deal with pooled emotion that would come up when dad’s voice would take on a certain tone, or he’d use certain phrases that were always hurtful to me as a child. It’s sort of like how a dog is hit on his head or snout to be corrected. After a while every time you bring your hand up to pet the dog he flinches in expectation that you’re going to hit him. That’s sort of like pooled emotion, its things that make you flinch.
Just in case you don't know what an Ileostomy is I'll tell you. An Ileostomy is a surgical opening constructed by bringing the end or loop of small intestine (the ileum) out onto the surface of the skin. Intestinal waste passes out of the Ileostomy and is collected in an external pouching system stuck to the skin. Ileostomy are usually sited above the groin on the right hand side of the abdomen ---- Wikipedia
So anyway there is a special disc that fits around the stoma and is glued down to your abdomen around the stoma. The disc has a circular raised lip that is designed for a pouch to snap securely onto. Then there's a clip at the end of the pouch that you unhook to drain the contents when it's needed. Sounds simple? It's not... You have to make sure that it's put on properly or it will leak. It's really not a good thing when it leaks, I'll leave it at that... Anyway we've learned by trial and error that it's best for dad to not drink Ensure before doing this change out. So the procedure of changing the bag has to be very accurate and very fast. First you gather all of the tools you need. A basin of warm water, a dye free, fragrant free all natural bar of soap, three to four wash cloths, a hair dryer, a pair of surgical scissors, surgical tape and an Ileostomy kit. Don't forget a towel in case of an accident. So once all that is together and dad is ready, you hand him a warm wet wash cloth. I’m not sure how it is with other people, but with dad you have to listen to him telling you what to do for at least 10 minutes before proceeding. Once you are ready you gently peel back the surgical tape that is on top of the attached disc. Usually it's adhered to the skin pretty bad, so you have to be very gentle. Once all of that is off you must peel the surgical tape that is attached to the disc starting from top to bottom. You want to be gentle, but at the same time you want to pull it down and over the stoma and keep whatever contents that is in the pouch, in the pouch. Then dad places his warm wash cloth over his stoma just in case it decides to "spew" and trust me, it does... Once you've got surgical gloves on you have to take a wash cloth and wet it and put some soap on it. You then proceed to clean around the stoma and remove all the glue residue and whatever else might be around it. Then you blow dry the skin to make sure it's dry. Once that is done you must have the disc ready by measuring the stoma and cutting the inner ring of the disc to fit around it. Once you've done that you have to put special glue around the ring and allow it to set a bit. Then you put the disc over the stoma, glue side down, and you smooth out the attached surgical tape onto the skin. You have to make sure it's on properly. Then you need to be fast about getting the pouch onto the disc by making sure the two raised rings meet and snap together. If the stoma spews before you get it together, well, you have to start all over... So once that's all on you put additional surgical tape around the disc base for added protection. That's it, sounds simple doesn't it. Well, it would be, but when dad is grumpy it's very difficult. I'd be grumpy too, so I understand. It does become quite exasperating though and it is very stressful.
The hospice worker brought out a baby monitor so mom can go from sleeping on the couch at night, to sleeping in her own bed. I set it up and dad tried it out. It has an emergency button on it and I’m sure the first time mom hears it go off it will scare her to death. This is the grumpy part... Dad wanted to put it somewhere other than his table, but I told him he couldn’t because it has an emergency button you have to push. He kept telling me to put it here or there and I again insisted he couldn't. Finally after a few minutes of trying to put it somewhere he wanted it he suddenly, in a very irritated voice, told me to put it back on the table because it has an emergency button on it... At this point I decided when mom got back I was going to go run errands for someone...
Later in the day a hospice counselor came by. Her name was Meredith. She sat down with us and very candidly talked about dad's dying with us. I was really glad that the subject was being broached. She wanted to know how mom was doing. Mom immediately started wiping tears. Meredith told mom that it was ok to cry, that is just what you do when you love someone. So don’t be ashamed to cry, wear the tears as you would a badge of honor. She asked her what her biggest fear was. Mom answered being alone. She married dad when she was 19 and he was 20. 44 years of marriage is a long time to be with someone and then suddenly be faced with the prospect of losing them. Meredith gave mom some ideas on how to best handle that. She told her to picture herself after dad was gone, alone in the house. She told her to let herself feel her emotions a little at a time, and eventually she’d see that it will be ok. She assured mom that she had a support system all around her. Mom is also worried about the house falling into disrepair. Dad always took care of things and mom just relied upon that. Meredith told her that if that happened she could call a plumber, or an electrician, or her son to help her find the right repair man. It was suggested that dad make a list of businesses that he used in the past with phone numbers. Mom also worried that I was going to burn out from coming over so much. I assured her that I wouldn’t, and if I did I’d take a break to recoup.
Meredith then asked me some questions. I told her I was doing fine. I told her that I was ok with dad dying, that I had made my peace with it. She asked me why I came over so much. I told her that at first it was an obsessive thing that I just had to do. I didn’t realize at the time that I was avoiding dealing with dad’s illness by being with him all the time. It wasn’t till I missed that one day, Christmas Eve, that I fell apart and was forced to grieve. She wondered if I was there more for mom than for dad. I told her I was concerned that no one, meaning my sisters, would give mom the care she needed. I felt like I had to be there for her for that reason. I thought about it afterwards and hoped it didn’t sound as bad to them as it does to me. I just have a strong sense of duty and loyalty to my parents, which is why I have taken charge of things in my own way. She asked how my two sisters were taking things. One is avoiding coming over for fear of having to grieve, and the other doesn’t come over for reason unknown to me. I know they come by once and a while and at least one of them calls once a week or so… Meredith told mom that she needed to call them and tell them that they need to come over on a certain day so she could go out to check on grandma in the nursing home, or her brother who is in the hospital, or grandpa who is at home alone. She asked me how I felt about that. I didn’t tell her I was mad at them for allowing me to shoulder all of this on my own. I didn’t tell her how much resentment I was feeling, or how I didn’t really seem to care for either one of them at the moment. I just told her it was a great idea, they needed to be here.
Meredith asked dad how he felt about things. He said he was ok. He wasn’t in a lot of pain. He said he was at peace. Meredith asked him about his childhood, she wanted to find out how he was taught to grieve. He told her the story of his grandpa who raised him. Dad told her how his grandfather had gotten sick and he pulled dad aside and told him that he was leaving and that once he was gone, well that was it, he was gone. There was no need to grieve over him. So dad said that he went to the woods that day and cried to himself and then he didn’t grieve anymore. I don’t know how old he was, but I know he was young. Every time he talks about his grandfather now he cries. There were a few other things talked about, but I don’t have total recall unfortunately, so I’m just going to leave this part of things and move on. It just ended up being a good hour long check in.
After Meredith left, mom and dad and I all felt rejuvenated. I told dad that I really enjoyed talking about things, and I hoped that we could do this weekly to see where each other was with things.
I decided that I needed to go home. I had been there almost 7 hours and I was tired. So like I always do when saying goodbye to dad, I squeezed his knee and told him I loved him and that I’d see him tomorrow. Of course I knew when I got home I’d end up calling him around 7:30, like I always do, to say good night to him.
So it was a good day.
Wednesday, January 6, 2010
Dad's Birthday
Dad throughout the years. The earliest photo is of him and his father, Lester Starling.
Today is dad's birthday, 01.06.10. He's 65 years old. He has successfully made it through all the important holidays.
Time is ticking by fast, faster than it usually does and dad is always a day or two ahead, he's lost track of time. I stayed over last night because mom has to go to the nursing home first thing in the morning to take care of hospice for grandma. She needed me to help get dad started on his day. I'm not sure what that entails, but I've got a good idea. We had a good evening, not sure if he did. He tries to curl up in a fetal position when he's in pain, but he has a hard time doing that because of his ileostomy bag. He stayed in that position, the best he could, all evening and through the night. We watched a John Wayne movie that was made in 1930. Dad loves westerns, I don't... I'm watching a lot of westerns...
It's 7:00 am now and I've been up since 5:30 am. I set up my coffee maker in the office and had it all ready to go so I wouldn't disturb anyone. Since dad has such a keen sense of smell these days I had to put a towel against the bottom of the door to prevent the aroma of coffee from getting to him. Hope it worked... It felt really weird sleeping in the house that I grew up in. I felt a magnetic pull to go home all night last night, and didn't sleep well because of it.
Last night before I went to bed, I emptied out dads ileostomy bag and made sure he didn't need me anymore. He told me that he was with his mom 65 years ago today, but he can't remember it. I was puzzled as to what he meant, and a little concerned that he might be losing his memory or slipping out of his mind... What he was telling me was that he was born 65 years ago. He said he was born around 2 a.m and it was the coldest night that they had had in years. It was frigid early this a.m so it was much like the early morning he was born. I told him I'd wish him happy birthday in the morning, since technically he wasn't born yet. He responded with "I was still present, even though I wasn't born." That makes sense, he was here, just waiting to escape the womb...
Dad has problems with swallowing and his mouth stays dry all the time. He has these cu tip type sponges that he keeps wet and in his mouth, so he doesn't say much anymore because of that. It's hard to guage what he's feeling, but he is in a little more pain now than before. He was a grumpy fellow yesterday, so I kept quiet around him. Dad gets irritated easily and he still has the ability to raise his weak voice to scolding level...
Tuesday, January 5, 2010
Sitting with Dad
Sitting with someone who is dying is a hard thing to do. You don't always know what to say, or how to act. I had that problem for a while. I'd go over and I'd sit for a few minutes, then get up and wander to the next room and then go back and sit back down. It seemed like I didn't say much to dad. I couldn't really think of the words to say. Then as time went by, and I was with him longer, I discovered that even though he is dying, he's still a whole human being. He was still dad, just in a different situation. He still had the same interests that he always had. I learned to talk to him about things outside of the situation. I paid attention to his facial reactions to my conversations, and if he seemed distant then I knew he wasn't interested. I learned to let dad steer the conversation. I also learned to touch on things briefly then move on to another topic. Dad has never been one to ramble on anyway, so the way dad handles conversation might be a little different from how someone else in the same situation might feel. I also learned that just sitting with him in silence is just as golden as trying to carry on a conversation. You have to listen more than speak. It's ok to talk about dying to them. It's hard to broach the subject, but it's what's happening to them. I asked dad if it was ok to talk about his cancer and his eminent passing and he was more than willing to talk about it. I asked him if he was in pain, he said he was, but it was centralized in his lower back. I asked him what dying felt like, he said he couldn't really explain it, he felt differently in his body somehow. I was able to ask him if he had spoken with everyone he wanted to speak with, and seen who he wanted to see, and he said he had. It felt good to me to know that, and I wouldn't have known if I hadn't have asked. Dad talks about going to heaven. I honestly believe the way he feels is that he's got his bags packed and he's taken care of everything, like you do when you leave to go on an extended trip, and he's ready to go. Sometimes when he talks about it he cries, but I think it's because he's just so overwhelmed with joy that he's going "home". He speaks of people who he loved in this life that have died, and his voice cracks up a little. I can't feel anything other than happiness for him right now, his enthusiasm for the next life is contagious. I've always gone to dad for guidance before going to anyone else. I was confident that dad would always have the answers that I needed, and for the most part he did. Though this process of drifting towards death dad has been a teacher to me. He has shown me many things and allowed me to participate in the experience of his preparation for it. I want to be able to walk with dad to the gate that is death, and I want to be able to send him off with comfort.
The most important thing I have done with my dad was make sure that my relationship with him was "current". I have been able to clear up a lot of misunderstandings with dad in the past 10 years or so. I was able to confront him about alot of things that happened during my childhood that had remained with me as a painful scar. We've yelled at each other, and we've cried with each other through the years, and it was all good. I had made our relationship "current" and that has made all the difference for me, for us. I was able to have a relationship with my father, a relationship of equals. He is my best friend, and I am thankful that we were able to interact in each others lives as such and not as father/son.
The one thing that I never really had from my dad was hearing him tell me that he was proud of me. While he was in the hospital back in November he had that conversation with me. He told me he was proud of me, but I told him I couldn't imagine why. My life had been totally different than his in so many negative ways. I didn't grow up to be the "man" he had imagined or hoped I'd be. I always felt shameful because of that. Dad listed all the reasons for being proud, which weren't my intentions for him, but he did. It opened my eyes to him. I wasn't invisible to him like I had always thought I was. He doesn't feel ashamed of me like I thought he might. Having a gay son wasn't as big of a burden on him as I made it out to be.
The most important thing I have done with my dad was make sure that my relationship with him was "current". I have been able to clear up a lot of misunderstandings with dad in the past 10 years or so. I was able to confront him about alot of things that happened during my childhood that had remained with me as a painful scar. We've yelled at each other, and we've cried with each other through the years, and it was all good. I had made our relationship "current" and that has made all the difference for me, for us. I was able to have a relationship with my father, a relationship of equals. He is my best friend, and I am thankful that we were able to interact in each others lives as such and not as father/son.
The one thing that I never really had from my dad was hearing him tell me that he was proud of me. While he was in the hospital back in November he had that conversation with me. He told me he was proud of me, but I told him I couldn't imagine why. My life had been totally different than his in so many negative ways. I didn't grow up to be the "man" he had imagined or hoped I'd be. I always felt shameful because of that. Dad listed all the reasons for being proud, which weren't my intentions for him, but he did. It opened my eyes to him. I wasn't invisible to him like I had always thought I was. He doesn't feel ashamed of me like I thought he might. Having a gay son wasn't as big of a burden on him as I made it out to be.
Saturday, January 2, 2010
Learning How to Deal
When it came out that dad was dying from cancer on December 9th I had a hard time being in the same room with him without getting physically upset. I felt a great deal of despair and anguish. It was hard for me to talk to him and keep my composure for any length of time. I felt guilty for being like that. Dad doesn't need to worry about other peoples emotional well being. I kept telling him, when I would go through an episode in front of him, that I was only human, that I was sorry and this is what happens when you love someone. He just kept telling me to be strong. After some practice I learned how to turn my emotions off. I soon discovered there were consequences to that though. Whenever I would be away from dad my emotions would turn back on and it would be like a pot boiling over on the stove. I had a hard time regaining composure. I also started experiencing severe anxiety that inevitably lead to passive aggressive behavior towards other people. Of course the anger stage is part of the acceptance of loss. I think that by being around dad everyday and seeing him in his current condition, that has somewhat desensitized me. I am still shocked by things from time to time... You never get use to seeing someone in a severe emaciated state. I have gotten so I can talk about him and be with him without feeling any grief. I worry sometimes that people might misunderstand and think that i'm not effected by this at all. I don't want to come across as cold, but I've gone through the acceptance of dad's eminent passing. I'm ok at the moment with it.
I can't explain what it feels like once you've gotten past the grief part of losing someone. I think it depends upon the person more than anything. For me, I'm at a point where I just have an urgency to do what I can for dad while he's still here. I am driven by the need to be with him all the time, which i would imagine, is taking a toll on my relationship with Mike. Mike understands though, and it probably does a long term relationship good to have some distance in it from time to time. I've also developed a more critical view of my sisters, but I'm trying hard to understand their actions, or lack thereof... I think once dad is gone I'm going to shatter once again, but I've seen my strength and I know I'll be able to put myself back together again.
Mom is having a difficult time with this. She has gone from having the nervous shakes in her hands and the constant red eyes to being a little calmer and less emotional. She has learned how to change dad's ileostomy bag without panicking. If you've ever seen such a thing, they are difficult. Once you get past the aesthetics of it and see it for it's purpose and function, well it's not so bad. She's also learned how to change the sheets on dad's bed with him on it. That actual comes in handy for many situations in life, it's easier to do than it sounds.
I've learned that when sitting with someone who is dying, conversation isn't always a welcomed thing. Something to always remember, when speaking with someone who is in such a situation is to always direct your conversation to that person. Remember they aren't hard of hearing, so there is no reason to speak loudly. Don't ask how they are doing, ask them how they are feeling at the moment. When there are two or more people visiting in the room, don't converse about things outside of the experience, the person dying doesn't want to hear about such things. Don't gossip or be negative about things, and don't whisper to each other. When in a separate room beyond the dying person, but still within earshot, don't laugh and carry on in mindless conversation. These are things that bother my dad, and would probably anyone in the same situation.
I can't explain what it feels like once you've gotten past the grief part of losing someone. I think it depends upon the person more than anything. For me, I'm at a point where I just have an urgency to do what I can for dad while he's still here. I am driven by the need to be with him all the time, which i would imagine, is taking a toll on my relationship with Mike. Mike understands though, and it probably does a long term relationship good to have some distance in it from time to time. I've also developed a more critical view of my sisters, but I'm trying hard to understand their actions, or lack thereof... I think once dad is gone I'm going to shatter once again, but I've seen my strength and I know I'll be able to put myself back together again.
Mom is having a difficult time with this. She has gone from having the nervous shakes in her hands and the constant red eyes to being a little calmer and less emotional. She has learned how to change dad's ileostomy bag without panicking. If you've ever seen such a thing, they are difficult. Once you get past the aesthetics of it and see it for it's purpose and function, well it's not so bad. She's also learned how to change the sheets on dad's bed with him on it. That actual comes in handy for many situations in life, it's easier to do than it sounds.
I've learned that when sitting with someone who is dying, conversation isn't always a welcomed thing. Something to always remember, when speaking with someone who is in such a situation is to always direct your conversation to that person. Remember they aren't hard of hearing, so there is no reason to speak loudly. Don't ask how they are doing, ask them how they are feeling at the moment. When there are two or more people visiting in the room, don't converse about things outside of the experience, the person dying doesn't want to hear about such things. Don't gossip or be negative about things, and don't whisper to each other. When in a separate room beyond the dying person, but still within earshot, don't laugh and carry on in mindless conversation. These are things that bother my dad, and would probably anyone in the same situation.
The week following December 12th
It was really nice that we were able to spend that special day with dad on the 12th. He was very happy with how things turned out.
Sunday, dad had a steady stream of visitors from his church. He is well loved and he received everyone very gracefully and stoically. Many family members started coming in from out of town to visit. I hadn't seen most of these people in over 20 years. They all seemed to notice that I wasn't the thin fellow I use to be, and they all seemed to comment on that, which really bothers me... I'll have a different neurosis after this is all over...
Monday a hospice facilitator came out and we learned that they could provide dad with a lawyer. I had already made an appointment with one the previous week, but this was much better. After a quick phone call, the lawyer that worked with hospice came out to the house. We met with him and dad discussed his wishes. Dad had hand written his will the past Friday so it was a simple task. So, with great relief, by Tuesday this would be final.
Dad gave me Power of Attorney over his health care. I didn't know about the health care part. With great relief it was made clear that hospice would take the responsibility of "pulling the plug" as it were, I sighed in relief. I was concerned that I was taking all of this away from mom, but she assured me that it was fine. I was genuinely surprised that dad would give me this responsibility. I had never been one to step up to any responsibility in the past. Apparently dad knew I needed this to restore my confidence. I dove right into it and I didn’t seem to second guess myself. I had everything he needed done within a week. Contacted all of his insurance companies, his retirement issuers, called people, and even started helping him with his Ileostomy bag. He had asked me to learn how to do that in case no one was available. When I first watched the nurse take it off and change it out and clean him up I thought I would fall out on the spot. I’ve always had a tendency towards being squeamish. I’ve mastered it now and he likes it when I change it out. He says I have a knack for care giving. He told me I was his right hand man. That didn’t help my attempt at being stoic.
Tuesday, hospice came out to bring dad a hospital bed. It was decided that it would be placed in front of the living room window. That was a good decision because not only could he be a part of everything, but he’d have the best view in the house. The two large windows that are against his bed are the same length as the bed, so he’d have a nice view of the trees and the birds and the morning sun. There were so many people visiting dad when the bed finally came that mom and I were very frustrated with the situation. Dad was tired and we had to get everything out of the room and yet there were at least 12 people standing or sitting in the kitchen. No one seemed to understand that they needed to leave...
Sunday, dad had a steady stream of visitors from his church. He is well loved and he received everyone very gracefully and stoically. Many family members started coming in from out of town to visit. I hadn't seen most of these people in over 20 years. They all seemed to notice that I wasn't the thin fellow I use to be, and they all seemed to comment on that, which really bothers me... I'll have a different neurosis after this is all over...
Monday a hospice facilitator came out and we learned that they could provide dad with a lawyer. I had already made an appointment with one the previous week, but this was much better. After a quick phone call, the lawyer that worked with hospice came out to the house. We met with him and dad discussed his wishes. Dad had hand written his will the past Friday so it was a simple task. So, with great relief, by Tuesday this would be final.
Dad gave me Power of Attorney over his health care. I didn't know about the health care part. With great relief it was made clear that hospice would take the responsibility of "pulling the plug" as it were, I sighed in relief. I was concerned that I was taking all of this away from mom, but she assured me that it was fine. I was genuinely surprised that dad would give me this responsibility. I had never been one to step up to any responsibility in the past. Apparently dad knew I needed this to restore my confidence. I dove right into it and I didn’t seem to second guess myself. I had everything he needed done within a week. Contacted all of his insurance companies, his retirement issuers, called people, and even started helping him with his Ileostomy bag. He had asked me to learn how to do that in case no one was available. When I first watched the nurse take it off and change it out and clean him up I thought I would fall out on the spot. I’ve always had a tendency towards being squeamish. I’ve mastered it now and he likes it when I change it out. He says I have a knack for care giving. He told me I was his right hand man. That didn’t help my attempt at being stoic.
Tuesday, hospice came out to bring dad a hospital bed. It was decided that it would be placed in front of the living room window. That was a good decision because not only could he be a part of everything, but he’d have the best view in the house. The two large windows that are against his bed are the same length as the bed, so he’d have a nice view of the trees and the birds and the morning sun. There were so many people visiting dad when the bed finally came that mom and I were very frustrated with the situation. Dad was tired and we had to get everything out of the room and yet there were at least 12 people standing or sitting in the kitchen. No one seemed to understand that they needed to leave...
A Letter to Dad.
Dad holding me when I was a toddler.
I wanted to give dad something on the 12th at his Christmas day. I struggled with what that would be. I decided to write him a letter, but I knew that in dads condition it couldn't be too wordy and too complicated. So instead of spending a week writing and rewriting and over editing I came up with a short letter that summed it all up very simply. Looking over it now, it reads somewhat childlike. It was a collaboration between my adult self and my 12 year old inner child. It also didn't help that I was a total emotional wreck as I wrote it. I wanted it to read as the present and not past tense. Dad is still with us and as long as he is nothing is past tense.
_____________________________________________
Dad,
You started me out early in life with walks in the woods and fishing trips that always led to discussions about birds and animals and amphibians and fish. You taught me how to fish, from tying knots for hooks, to how to fish for certain fish, and how to cast a line and how to motor and paddle a boat. You taught me how to properly put a cricket on a hook, which is why I will always use crickets when I fish. You taught me about birds. You taught me about how to identify them and I love to talk to you about them so much. You taught me how to take care of my fishing equipment, how to take care of basic car maintenance, how to take care of a lawn mower. You’ve taught me how to deal with people, and you’ve always taught me to love and appreciate people and how to forgive. I do all those things because you showed me how by living the example and I’m glad that I am able to do that. All these things will benefit me for the rest of my life and I have those things only because you love me enough to show me those things. You have made me the happiest and richest man alive. You have given me so much that will give me joy for the rest of my life. You have solved so many problems for me and I was always able to see why you gave me the solutions you did and because of that I am able to solve problems with greater ease now. You have handed me down so much wisdom.
I have discovered that the older I get the more like you I am becoming. I have your sense of humor and I have your seriousness, I have your gentleness and kindness. I even have a voice similar to yours. I know we have always had a little confusion because we share the same name. That use to be a bit frustrating at times for us, but I have grown to cherish that name, only because it’s yours as well.
So as my life continues I look forward to rediscovering your family. I am going to make it a point to get out and visit them more often. I look forward to enjoying all the things you’ve instilled in me.
I love you so much dad, I can’t say that enough. I feel loved by you and I always have and I always will.
Love your Son
Friday, January 1, 2010
Dad's Christmas
On December the 12th, a Saturday, we had our Christmas with dad. I don't remember if we ate or not. I remember we all were in the living room with him. Me, my partner Mike, Teresa and her husband Gary and their daughter Brittany, Debbie and Kevin and their Daughter Tori. I was videoing the event. I didn't do a very good job, my hands were shakey and I didn't realize that the sd card was almost full, so I didn't get all of it... There are no pictures of this day either, which really upsets me. So basically it starts out with the granddaughters, Brittany and Tori, getting their gifts from dad first. Tori opened up hers and it was a necklace and matching earing set, and then Brittany opened hers, and it was the Jewelry Box that played "What a wonderful World" by Louis Armstrong. It wasn't the typical tune, it was the actual song with him singing it. We all were trying to stifle our grief at that point. Then Mike, Kevin and Gary all opened up their gifts. Dad had gotten them collector knife sets. Then Debbie and Teresa opened theirs.
After it was over we all sort of drifted to different parts of the house. We were trying so hard to come to terms with what was happening. Mike and I stayed a long time after everyone left. I didn't want this day to end, and suddenly I couldn't bear to be away from my father...
After it was over we all sort of drifted to different parts of the house. We were trying so hard to come to terms with what was happening. Mike and I stayed a long time after everyone left. I didn't want this day to end, and suddenly I couldn't bear to be away from my father...
Dad's Christmas Wishes
On the way home from the Doctors visit that morning, the one where we found out that dad was dying and only had a short time left, we stopped at the post office for some reason or another. I think mom had to mail a letter, or a bill. I was driving the van and dad was sitting in the front seat beside me. I couldn't speak to him without crying. I was so overwhelmed.
When we got home Dad settled into his recliner and called me and mom into the living room. Mom and I were still in shock from what the doctor had just told us a few hours ago. He asked me to go get some personal effects for him. We all three sat in the living room and dad gave us a few things, along with instructions, necessary for carrying out his first wishes. We all three tried so hard to hold it together, but it was an impossibility. The floodgates had been opened, and until all the water ran through them, it would be a while before it would be dry. He instructed us to go out and buy Christmas from him to the family.
For the past couple of years dad would always buy us something useful, but he'd present us with something odd first. An example would be the one Christmas my sisters and I each received a plastic spatula. I assume, like me, they thought "ok, maybe I need a spatula..." Then later in the evening we'd get the actual gift, which was an electric skillet. See, you can’t use a metal spatula on the skillet, it will scratch the Teflon off. So per instructions by dad I had to find three sets of really nice cookware for myself and my two sisters. I had to find a hand towel, because you need to hand towel to wash the pots and dry them immediately so they won’t spot. I also needed to find two sets of jewelry for both of my nieces. I suggested a keepsake jewelry box to the put the jewelry in, which he thought was a good idea. He also wanted me to go out and buy mom a new stove. Mom didn’t want one just yet. I understand now, it was too much for her to handle.
So basically my dad came home from the doctor’s visit with a sense of urgency to take care of things. He didn’t think he’d be here at Christmas time so he wanted to have Christmas on the 12th. I can only imagine what was going through his mind at the time. I know I was being driven by this latest task of getting Christmas together, so I didn’t have time to grieve too much. My mom on the other hand was a basket case.
As we got into the car to drive to Raleigh, she just let it all go. I supported her the best I could. I was overwhelmed myself and had never had to help anyone through a situation like this. My uncle stayed with dad while mom and I were out and about. We ended up going to Crabtree. The first place we went was to Things Remembered. We found a nice silver heart shaped jewelry box. It played “What a Wonderful World” by Louis Armstrong. We both cried when we listened to it in the store. I’m sure the sales clerk wondered what she had gotten herself into. We had them both engraved to say “I will Love you always… Grandpa" Afterwards we went to Belks and found three sets of really nice Emeril Lagasse cookware sets. Dad wanted me to haggle… I don’t haggle, but I did for him. We then found three really nice dish towels. Dad also wanted me to pick up a gift for my two brother-in-laws and Mike. So I found them all three a collectors knife set. After having everything gift wrapped we headed home.
My sisters came over that night and they put up the Christmas tree. I had to call dad’s brothers to tell them the news about dad. It was difficult, but it was a task that dad gave me. He seemed to know that if he kept me busy, he’d keep my mind off of grieving. I did quite a bit of that when I went home at night. I just couldn’t get over this. It was hard.
When we got home Dad settled into his recliner and called me and mom into the living room. Mom and I were still in shock from what the doctor had just told us a few hours ago. He asked me to go get some personal effects for him. We all three sat in the living room and dad gave us a few things, along with instructions, necessary for carrying out his first wishes. We all three tried so hard to hold it together, but it was an impossibility. The floodgates had been opened, and until all the water ran through them, it would be a while before it would be dry. He instructed us to go out and buy Christmas from him to the family.
For the past couple of years dad would always buy us something useful, but he'd present us with something odd first. An example would be the one Christmas my sisters and I each received a plastic spatula. I assume, like me, they thought "ok, maybe I need a spatula..." Then later in the evening we'd get the actual gift, which was an electric skillet. See, you can’t use a metal spatula on the skillet, it will scratch the Teflon off. So per instructions by dad I had to find three sets of really nice cookware for myself and my two sisters. I had to find a hand towel, because you need to hand towel to wash the pots and dry them immediately so they won’t spot. I also needed to find two sets of jewelry for both of my nieces. I suggested a keepsake jewelry box to the put the jewelry in, which he thought was a good idea. He also wanted me to go out and buy mom a new stove. Mom didn’t want one just yet. I understand now, it was too much for her to handle.
So basically my dad came home from the doctor’s visit with a sense of urgency to take care of things. He didn’t think he’d be here at Christmas time so he wanted to have Christmas on the 12th. I can only imagine what was going through his mind at the time. I know I was being driven by this latest task of getting Christmas together, so I didn’t have time to grieve too much. My mom on the other hand was a basket case.
As we got into the car to drive to Raleigh, she just let it all go. I supported her the best I could. I was overwhelmed myself and had never had to help anyone through a situation like this. My uncle stayed with dad while mom and I were out and about. We ended up going to Crabtree. The first place we went was to Things Remembered. We found a nice silver heart shaped jewelry box. It played “What a Wonderful World” by Louis Armstrong. We both cried when we listened to it in the store. I’m sure the sales clerk wondered what she had gotten herself into. We had them both engraved to say “I will Love you always… Grandpa" Afterwards we went to Belks and found three sets of really nice Emeril Lagasse cookware sets. Dad wanted me to haggle… I don’t haggle, but I did for him. We then found three really nice dish towels. Dad also wanted me to pick up a gift for my two brother-in-laws and Mike. So I found them all three a collectors knife set. After having everything gift wrapped we headed home.
My sisters came over that night and they put up the Christmas tree. I had to call dad’s brothers to tell them the news about dad. It was difficult, but it was a task that dad gave me. He seemed to know that if he kept me busy, he’d keep my mind off of grieving. I did quite a bit of that when I went home at night. I just couldn’t get over this. It was hard.
Thursday, December 31, 2009
Wednesday December 9th.
After much concern as to why dad was getting worse since coming home from his stay at the hospital, we took him to his doctor. We find out the truth on this day. Dad already knew, he was protecting us all.
Dr.: Are you tired? Just lie back. Are you eating ok?
Dad: Yeah ok.
Mom: He’s eating. I’m keeping something in his mouth all the time.
Dr. : your arms aren’t as small as they were last time.
Mom: It just worries us that he’s still weak. He’s walking back and forth in the
house every day.
Dr. Well look, let’s be brutally honest with each other, we’ve got cancer we’re dealing with here.
Mom: I know
Dr.: Cancer will wear you out, and the question I’ve got is what is Dr.______ plan?
Mom: That’s something we don’t know.
Dr.: When are you suppose to go back and see Dr. _______?
Mom: We don’t know, did you make an appointment William?
Dr.: Time to make an appointment and go back to see Dr. _______
Dad: If I’ll be able to make it there, If I’ll be able to make it back.
Dr.: Well, see the thing is if you can’t make it back he’s not going to start you on chemotherapy. If we don’t start you on chemotherapy we’re not going to be able to beat back the cancer at all.
(The dr. looks at dad’s incision)
Dr.: oh this looks great. Have ya’ll helped with this or have you tried to stay away from that?
Mom: Oh, I’m helping the nurses
Dr.: Ok, because it looks great, the wound looks good.
Mom: good.
Dr.: Ok, what I’m going to do today is have one of the ladies take the rest of the staples out because you don’t need them. This looks like it’s doing really good. Cough for me… Ok. You’re getting your Ensure and you’re keeping that down?
Dad: yes
Dr.: Ok, alright, um, the cancer is winning. As long as you are losing weight, the cancer is winning.
Mom: yeah
Dr.: I’m not going to lie to you and I’m not going to sugar coat it, if we can’t get weight onto you it’s because the cancer is using your calories more than you are. Ok, it’s sort of like running a car with the air conditioner on and you don’t get as good gas mileage because the air conditioner is using the gas, rather than the engine using the gas to drive all wheels. What we need to do is, if possible, get to a point where we can start killing those cancer cells, but we can’t do that till you start to get a little bit stronger. This is also taking energy away, the wound infection is, but this is looking as good as I would have expected it to look in a week. We’re going to take the stitches out, take the staples out, and redress it. Um and I want to check you back in a week and we’ll weigh you again today.
I can’t make out a lot of what dad is saying in the recording, so I’ll leave out most of it. He’s basically talking about his weight and how he had been weighing himself every day. At this point he doesn’t have the strength to walk or get into the car. He’s very worried that he won’t be able to make it back. We all wanted dad to go back into the hospital. I’ll jump ahead a little. He was down to 119lbs this particular day. you’ve got to eat. The question is this, are you ok at home now?
Dad: I’m ok, like I say it’s just hard to get up and down. I feel good, but if I could just get fluids back in my body again. When I was in the hospital my hands were puffy and I had fluid all over. Now I drink a lot, I’ve drank ensure, three or four bottles a day. I eat well, I’m just extremely weak.
Dr.: Well the problem is the more that you are losing, the more weight that you lose, the more weakness you have, the bigger advantage the cancer has. Ok, and that’s the problem. We need you to get strength and muscles because looking at you from last week to this week the wound looked fine. The rest of you looks like you are almost a third of a man as you were last week, and when you tell me you’re afraid you won’t be able to come back to see me next week that worries me.
Mom: well when do we need to get in touch with Dr. _____?
Dr.: Dr.______ is not going to start him on chemotherapy until he starts getting some strength back. So it’s sort of a double edged sword. Ok, if I made an appointment for you to see Dr. _____ could you get over to see him?
Mom: yeah we’ll get him over there, we’ll take him.
Dr.: We can set that up for you before you leave and we’ll take the stitches out. I’ve never lied to my patients because I think it is important that they know if things don’t get any better over a course of the next few days or a week you might want to start thinking about who you want to talk to. Are there any people in your life that you want to talk to? You know what I’m saying? Ok.
At this point I am totally confused. Dad and the Dr. had led us to believe that his cancer was slow growing. That he would have a good chance of recovery and he would be able to fight this. Dad had told me on the way there that day to not ask any questions…
Bill: Can I ask you a question? Dad, don’t get mad at me, but could you please explain the cancer to me?
Dr.: I’m not sure what you mean?
Bill: What is it?
Dr.: It started out in his small intestines and the name of the cancer is Carcinoid cancer. It has spread to the liver already. I think we had 40 lymph nodes that we took out, I think there was cancer in 12 of them. So the cancer is in many places besides where it started. It was responsible for the death of the intestines. Cancer is a problem because it acts like a weed. It won’t just grow wild in its own garden, but it puts seeds out in the air like a dandelion puts out the little puff things and any place they land, they start to grow. The cancer, if you want to think about it like that, is like another person or another animal living inside you. It is constantly competing with you for your food and your energy and the more of it there is the more that it takes from you. That is why people waste from cancer. We don’t really understand why but we conceptually think that it’s a competitive thing and the cancer cells grow very, very fast. One and two they don’t die, they stay around much longer than regular cells do. Cells in our body are dying all the time. That’s normal for a cycle. Women understand that because they exfoliate themselves. They get rid of the dead skin cells. Cancer cells stay around for much longer than they should. There are two reasons, their metabolic rate is much higher, they need more calories per cell than the rest of the body does and secondly they don’t die when they should. For both of those things, they cause the body to use itself up. The first thing the body uses is fat. That has the highest energy per pound, per gram. Once the fat is gone, then it starts using muscles. What we’re watching now is muscles are being used up because that is the protein the body is burning to feed its needs right now. That’s not a good thing. We’d rather it be using fat or sugar, not proteins. Does that sort of make sense to you?
Bill: Yes it does
Dr.: we know that there is cancer in the liver, we knew that from the day we operated. We saw that there was a mass there about yay big and in all likelihood elsewhere as well. What we learned from surgery was that it wasn’t just in his liver, it is all in the tissue around the intestines and the only way that you can control that, if you can control it, is with medicine and there is no guarantee that the medicine will control it. What we know is this is advanced. The thing that people always ask me is we know that he was fine till he was operated on. He wasn’t, you weren’t. You knew for a long time and it’s like watching something snowball. The snowball that starts at one speed seems to be going faster as it gets to the bottom because for months the snowball has been getting bigger and gaining more momentum. So that when you finally notice the snowball you’re like “how did it get it so big so fast?” It didn’t get so big so fast after surgery. It’s just in surgery it was at the same speed, but because it was so big it had a head start and it just looks like surgery made it go faster. That’s not the way it is. So what we need to do, I’m not sugar coating it. We need you to be able to get some strength and get some food in.
Dad: I’ve worked hard.
Dr.: I know you have. You need to get over to see Dr. ____ to see if he thinks you can tolerate chemotherapy.
My dad says something and I can barely make out his voice, but I’ve listened to it over and over and I’m pretty sure he says the following.
Dad: I might as well just go on home.
Dr.: Well I understand why you’d feel that way and one of the things we do is never take hope away from people but things are very very bad. There’s no question about that. Things are very, very bad. That is why one of the questions I am asking you is are ok with being at home, or have you reached a point where you need to be in a facility where you need help getting around or are there people at home that are able to take care of you?
Dad: Right now I am able. Let me go as long as I can to help myself.
Dr.: that’s fine and you know it’s really hard to have these conversations, but you need to be able to hear from him what he wants because you can’t make him feel guilty and it’s ok to cry. That’s alright, but you got to hear what he wants and what he’s ready for and you can help him better if you know it. One of the things about life is people always tell me that the patients can’t take the truth. It’s always the families that can’t take the truth. Patients do just fine, because patients know. Now, what I want to do is I want to make you as well as I can. I don’t want to beat you up. I don’t want to put you through anything that is really torturous, but you don’t need to take your weight everyday to know that there isn’t as much of you as there was last week. You know that losing weight that fast is not a good thing. Once the water weight is gone and it’s just muscles you’ve got a problem and I think that, um, the question I’ve got for you is, quite frankly, are you at peace? Ok, you need to talk to them; you need to talk to them about this.
Again dad’s response is so faint that I have listened to it and tried to remember as much as I can and I’m pretty sure he says the following.
Dad: I don’t want any treatment.
Dr.: Ok, I’m not pushing that. Is there anything I can do? Am I being too unkind here?
Dad: No
Dr.: don’t tell me that to make my conscience better.
Dad: If I can’t get back to see you what do I do?
Dr.: you call me; we’ll take care of it by phone. See, we have people to come out to the house to take care of you. We can arrange for that. Ok?
A lot of the conversation at this point involves me and mom and the doctor talking over each other, and it’s very difficult to make out things word for word. Essentially we were discussing Hospice care, and arranging for an initial appointment. Dad was concerned that he was doing something wrong and the doctor was assuring him that he wasn’t. This was the first time we had found out that his cancer had spread throughout his body. We didn’t know it was this grave. Mom and I both hit the floor and shattered as it were.
Dr.: Are you tired? Just lie back. Are you eating ok?
Dad: Yeah ok.
Mom: He’s eating. I’m keeping something in his mouth all the time.
Dr. : your arms aren’t as small as they were last time.
Mom: It just worries us that he’s still weak. He’s walking back and forth in the
house every day.
Dr. Well look, let’s be brutally honest with each other, we’ve got cancer we’re dealing with here.
Mom: I know
Dr.: Cancer will wear you out, and the question I’ve got is what is Dr.______ plan?
Mom: That’s something we don’t know.
Dr.: When are you suppose to go back and see Dr. _______?
Mom: We don’t know, did you make an appointment William?
Dr.: Time to make an appointment and go back to see Dr. _______
Dad: If I’ll be able to make it there, If I’ll be able to make it back.
Dr.: Well, see the thing is if you can’t make it back he’s not going to start you on chemotherapy. If we don’t start you on chemotherapy we’re not going to be able to beat back the cancer at all.
(The dr. looks at dad’s incision)
Dr.: oh this looks great. Have ya’ll helped with this or have you tried to stay away from that?
Mom: Oh, I’m helping the nurses
Dr.: Ok, because it looks great, the wound looks good.
Mom: good.
Dr.: Ok, what I’m going to do today is have one of the ladies take the rest of the staples out because you don’t need them. This looks like it’s doing really good. Cough for me… Ok. You’re getting your Ensure and you’re keeping that down?
Dad: yes
Dr.: Ok, alright, um, the cancer is winning. As long as you are losing weight, the cancer is winning.
Mom: yeah
Dr.: I’m not going to lie to you and I’m not going to sugar coat it, if we can’t get weight onto you it’s because the cancer is using your calories more than you are. Ok, it’s sort of like running a car with the air conditioner on and you don’t get as good gas mileage because the air conditioner is using the gas, rather than the engine using the gas to drive all wheels. What we need to do is, if possible, get to a point where we can start killing those cancer cells, but we can’t do that till you start to get a little bit stronger. This is also taking energy away, the wound infection is, but this is looking as good as I would have expected it to look in a week. We’re going to take the stitches out, take the staples out, and redress it. Um and I want to check you back in a week and we’ll weigh you again today.
I can’t make out a lot of what dad is saying in the recording, so I’ll leave out most of it. He’s basically talking about his weight and how he had been weighing himself every day. At this point he doesn’t have the strength to walk or get into the car. He’s very worried that he won’t be able to make it back. We all wanted dad to go back into the hospital. I’ll jump ahead a little. He was down to 119lbs this particular day. you’ve got to eat. The question is this, are you ok at home now?
Dad: I’m ok, like I say it’s just hard to get up and down. I feel good, but if I could just get fluids back in my body again. When I was in the hospital my hands were puffy and I had fluid all over. Now I drink a lot, I’ve drank ensure, three or four bottles a day. I eat well, I’m just extremely weak.
Dr.: Well the problem is the more that you are losing, the more weight that you lose, the more weakness you have, the bigger advantage the cancer has. Ok, and that’s the problem. We need you to get strength and muscles because looking at you from last week to this week the wound looked fine. The rest of you looks like you are almost a third of a man as you were last week, and when you tell me you’re afraid you won’t be able to come back to see me next week that worries me.
Mom: well when do we need to get in touch with Dr. _____?
Dr.: Dr.______ is not going to start him on chemotherapy until he starts getting some strength back. So it’s sort of a double edged sword. Ok, if I made an appointment for you to see Dr. _____ could you get over to see him?
Mom: yeah we’ll get him over there, we’ll take him.
Dr.: We can set that up for you before you leave and we’ll take the stitches out. I’ve never lied to my patients because I think it is important that they know if things don’t get any better over a course of the next few days or a week you might want to start thinking about who you want to talk to. Are there any people in your life that you want to talk to? You know what I’m saying? Ok.
At this point I am totally confused. Dad and the Dr. had led us to believe that his cancer was slow growing. That he would have a good chance of recovery and he would be able to fight this. Dad had told me on the way there that day to not ask any questions…
Bill: Can I ask you a question? Dad, don’t get mad at me, but could you please explain the cancer to me?
Dr.: I’m not sure what you mean?
Bill: What is it?
Dr.: It started out in his small intestines and the name of the cancer is Carcinoid cancer. It has spread to the liver already. I think we had 40 lymph nodes that we took out, I think there was cancer in 12 of them. So the cancer is in many places besides where it started. It was responsible for the death of the intestines. Cancer is a problem because it acts like a weed. It won’t just grow wild in its own garden, but it puts seeds out in the air like a dandelion puts out the little puff things and any place they land, they start to grow. The cancer, if you want to think about it like that, is like another person or another animal living inside you. It is constantly competing with you for your food and your energy and the more of it there is the more that it takes from you. That is why people waste from cancer. We don’t really understand why but we conceptually think that it’s a competitive thing and the cancer cells grow very, very fast. One and two they don’t die, they stay around much longer than regular cells do. Cells in our body are dying all the time. That’s normal for a cycle. Women understand that because they exfoliate themselves. They get rid of the dead skin cells. Cancer cells stay around for much longer than they should. There are two reasons, their metabolic rate is much higher, they need more calories per cell than the rest of the body does and secondly they don’t die when they should. For both of those things, they cause the body to use itself up. The first thing the body uses is fat. That has the highest energy per pound, per gram. Once the fat is gone, then it starts using muscles. What we’re watching now is muscles are being used up because that is the protein the body is burning to feed its needs right now. That’s not a good thing. We’d rather it be using fat or sugar, not proteins. Does that sort of make sense to you?
Bill: Yes it does
Dr.: we know that there is cancer in the liver, we knew that from the day we operated. We saw that there was a mass there about yay big and in all likelihood elsewhere as well. What we learned from surgery was that it wasn’t just in his liver, it is all in the tissue around the intestines and the only way that you can control that, if you can control it, is with medicine and there is no guarantee that the medicine will control it. What we know is this is advanced. The thing that people always ask me is we know that he was fine till he was operated on. He wasn’t, you weren’t. You knew for a long time and it’s like watching something snowball. The snowball that starts at one speed seems to be going faster as it gets to the bottom because for months the snowball has been getting bigger and gaining more momentum. So that when you finally notice the snowball you’re like “how did it get it so big so fast?” It didn’t get so big so fast after surgery. It’s just in surgery it was at the same speed, but because it was so big it had a head start and it just looks like surgery made it go faster. That’s not the way it is. So what we need to do, I’m not sugar coating it. We need you to be able to get some strength and get some food in.
Dad: I’ve worked hard.
Dr.: I know you have. You need to get over to see Dr. ____ to see if he thinks you can tolerate chemotherapy.
My dad says something and I can barely make out his voice, but I’ve listened to it over and over and I’m pretty sure he says the following.
Dad: I might as well just go on home.
Dr.: Well I understand why you’d feel that way and one of the things we do is never take hope away from people but things are very very bad. There’s no question about that. Things are very, very bad. That is why one of the questions I am asking you is are ok with being at home, or have you reached a point where you need to be in a facility where you need help getting around or are there people at home that are able to take care of you?
Dad: Right now I am able. Let me go as long as I can to help myself.
Dr.: that’s fine and you know it’s really hard to have these conversations, but you need to be able to hear from him what he wants because you can’t make him feel guilty and it’s ok to cry. That’s alright, but you got to hear what he wants and what he’s ready for and you can help him better if you know it. One of the things about life is people always tell me that the patients can’t take the truth. It’s always the families that can’t take the truth. Patients do just fine, because patients know. Now, what I want to do is I want to make you as well as I can. I don’t want to beat you up. I don’t want to put you through anything that is really torturous, but you don’t need to take your weight everyday to know that there isn’t as much of you as there was last week. You know that losing weight that fast is not a good thing. Once the water weight is gone and it’s just muscles you’ve got a problem and I think that, um, the question I’ve got for you is, quite frankly, are you at peace? Ok, you need to talk to them; you need to talk to them about this.
Again dad’s response is so faint that I have listened to it and tried to remember as much as I can and I’m pretty sure he says the following.
Dad: I don’t want any treatment.
Dr.: Ok, I’m not pushing that. Is there anything I can do? Am I being too unkind here?
Dad: No
Dr.: don’t tell me that to make my conscience better.
Dad: If I can’t get back to see you what do I do?
Dr.: you call me; we’ll take care of it by phone. See, we have people to come out to the house to take care of you. We can arrange for that. Ok?
A lot of the conversation at this point involves me and mom and the doctor talking over each other, and it’s very difficult to make out things word for word. Essentially we were discussing Hospice care, and arranging for an initial appointment. Dad was concerned that he was doing something wrong and the doctor was assuring him that he wasn’t. This was the first time we had found out that his cancer had spread throughout his body. We didn’t know it was this grave. Mom and I both hit the floor and shattered as it were.
Wednesday, December 30, 2009
Home the Saturday after Thanksgiving
So it was very difficult having dad in the hospital on Thanksgiving day. I knew that it would be even harder on mom so I had fretted about having as normal of a day as I could for her, and it had finally come. I cooked a 20 lb turkey and some of the trimmings, my sister brought a few dishes over. We all tried to have a good day, it was difficult not having dad home. After we ate the family dispersed fairly quickly, which was sad for me because it was over so soon. Dad wanted me to bring him some pumpkin pie when I came up to see him. He didn't really get to eat any, he was still too sick.
On Saturday Mike and I had gone up to Raleigh to unwind at Borders. It had just been so hard on me with everything that had been happening to dad. We had just sat down and I remember getting my coffee and picking out a book to read when mom called. She said they were going to release dad from the hospital and she needed me to come and get them. I was overwhelmed and I was trying to figure out a way to get out of having to take on that responsibility. I really feel horrible about that now, but it was just my emotions at the time. We finally made it to the hospital an hour later and dad was still waiting in his room to be checked out. Teresa and Gary were there as well. We all were sort of shocked that he was going home so soon. None of us believed he was ready, but his doctor did... I drove him and mom back to the house while Mike followed in our car. I remember I drove so carefully. I think I literally held my breath all the way home. I had to be so aware of stopping and starting and turning corners. I was carrying home a very sick and delicate man that I wanted to make as comfortable as possible. It seemed so foreign to me having to help my dad out of the car and into the house. It took us all, Teresa, Gary, Mike, mom and me, to help dad. He had no strength, no leg muscles to lift and move his body up those steps. After we had done that, I was suddenly aware that dad wasn't the man that I had spent the spring fishing with, he was a shell, a very fragile shell.
Once he got settled into the living room and in the recliner, he wrapped up in a soft blue throw and tried to acclimate as best he could. We all thought this was the beginning of recovery. He had a hard time those first few days. Mom didn't know what to do to help him, and dad was trying to learn how to empty his own ileostopy bag. He was actually walking back and forth to the bathroom to empty his bag. He started eating more and more, but everyday he weighed and he kept losing weight. Till finally 11 days later we took dad back to his doctor to find out what was going on.
The emergency surgery
This was right after dad's emergency surgery. He was still in ICU.
The Emergency Surgery
On November the 20Th I received a phone call from mom around 6:00 a.m. She had to call 911 at around 4:00 a.m for dad. Dad had gotten up to go to the bathroom and that is around the time his small intestines had ruptured. Mom relayed to me later that dad literally had to crawl back to the bedroom because he was in so much pain. I didn't get to the hospital til around 10 that morning. I recorded the conversation with dad's doctor that performed his surgery that day. Only because I have a hard time retaining information and when you're under stress you don't always hear everything at the time. I transcribed it and edited it for easier reading. I'll let the good doctor explain things... This conversation was immediately after dad's surgery on November 20Th. So this is the first we were told of what was going on with dad.
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November 20th 2009
The morning of dad's bowel perforation surgery
Doctor's conversation with family after surgery
Dr.: Your husband was pretty sick, and he got extremely sick last night. Something happened last night that changed his condition. What happened was his bowels perforated. That is that the intestines basically sprung a leak. Now what is normally inside the intestines went all over inside of his abdomen. First of all, that is horribly painful and usually when it happens to people they can tell you the second that it happens because it’s like "my belly is hurting" and then bang! "My belly is excruciating!" This makes you terribly, terribly sick. When I got to him this morning, when you had just left, he was in shock. Shock means that his blood pressure wasn’t high enough to work his kidneys and what we had to do was, we had to reverse that. We had to get medications into him, mostly that means antibiotics and a lot of IV fluid and he wasn’t even in condition to go to the operating room at that time. We had to get him good enough to get him to surgery. That took us a couple of hours. Now we’re finished with the surgery and frankly he’s a lot better now than he was two hours ago, but, that’s a far cry from saying he’s well. He still needs medicine to keep his blood pressure up, which means he’s still in shock, but his shock is much better. We know we can tell that because he’s now making urine and the acid amount in his body is much lower. The problem was that his small intestines for a distance of that far (he was showing us two feet distance with his hands) had died, and the valve (I’m assuming he’s using the term Valve to refer to the small intestines) was kinked up and knotted up in a ball and when the valve dies it blows open and I had to remove all of that. He can live without that and he didn’t lose enough valve that it will be a significant problem but when there is that much dead valve and that much contamination it is not safe to put the pipes back together again so what we do is we do what is called an Ileostomy. The valve comes out of his belly on a bag and if we get him through this, when we get him through this, a month, two months, three months from now, we’ll put it back together again, but it is not safe to do it now while he is so sick, ok. We’re not out of the woods; we need him to recover now. First of all we need his heart and lungs to tolerate the horrible insult that he has had, ok. We need him not to develop anymore infections. We need the wound to heal without an infection. We need him not to get pneumonia and we need his kidneys to continue to work. I would think that by tomorrow, I would hope to get him on the pressure medicine, the medicine that we’re using to keep up his blood pressure. I would think that just by washing him out and taking out the dead valve that we would have a big gain on him making his own blood, holding up his own blood pressure. This is all very complicated and I’m trying to keep it as baseline level as possible. So what we’re sure of is he’s terribly sick and he’s better than he was and I expect he will continue to get better, but, I need some luck here. I need some things to bounce in his favor. Now the question that is behind everybody’s mind is “why did this happen”? The short answer is, I don’t know. At the center of this area of bowel, where it was all drawn together, there was a very hard knot. It was harder than infection, it was harder than appendicitis or diverticulitis and I’m very concerned that there is going to be a cancer at the base of this. I don’t know for sure, I didn’t see it clearly enough if you follow what I am saying, ok. My way is to tell exactly what I know when I know it. There is something very hard in there; it caused the problem because the valve didn’t die on its own. It doesn’t quite work that way. Something else caused it to get bound up like that. We will know the answer to that by Tuesday or Wednesday; it will take that long to get it all taken out. That’s not going to change what I’ve got to do over the weekend. Right now, our first problem is getting him through the acute problem of having the bowel perforation. I can’t stress how big a problem that was because this had been that way over night. At least this didn’t just happen today. I’m thinking this happened yesterday.
Hopefully tomorrow we will be able to get him off of the breathing machine if he wakes up enough. The good news is he is not a smoker, doesn’t have heart disease, doesn’t have lung disease, and doesn’t have intrinsic kidney disease. All of those things are in his favor and he’s not a diabetic and he doesn’t have any other immune diseases that would keep him from recovering. So for all the good things, for all his strengths, I expect that he has a better than average chance for someone his age to bounce back from this, ok.
Mom: Are you checking that spot to see if it is cancer?
Dr.: Absolutely, absolutely
Mom: because they have been running tests on him
Dr.: I know that, I know that
Mom: it has just been terrible.
Teresa: why didn’t this show up in his colonoscopy?
Dr.: This isn’t in his colon; it wasn’t in his intestines either. It’s outside of the intestine and that’s why I’ve waited to see what it is. It was in the tissue next to the intestine pulling the intestine down to a point you wouldn’t find it on any colonoscopy or upper GI endoscopy. I promise, just a bluntly as I am, I’ll tell you when we know what that is. For the time being, my first control is we have a house on fire and my concern is not finding out who set the fire. My first concern is putting out the fire. We have gone a long way, now I need to make sure there are no ashes, if that all makes sense for an analogy. So you can visit with him, ok, but don’t expect him to know you are there till tomorrow. Right now I would just assume let him rest, but at the same time he is going to tell you that he feels better than when he came into the hospital. Washing that stuff out, getting the dead valve out, dead valve is very, very painful, he should feel better. So I believe in prayer, go ahead light your candles and say your prayers and I will be in everyday to see him. If you have any questions you tell the nurses to get in touch with me, otherwise I’m through with the procedure, ok?
Apparently I asked the doctor about the mass and this was his response:
It wasn’t a very big mass at all. It was like an acorn, but I don’t know what it is yet, and I don’t know where it came from. I don’t believe it started there that’s the other thing. So when I know more I will tell you, and in the meantime I have every reason to expect we will get him better, but we need nothing to go wrong, ok? The lower intestines, the part you examine with the colonoscopy, was all fine. It was the small valve, and we have about 20 to 25 feet of small valve, so he won’t miss that. He’ll probably feel better now than he has for months. Alright now, he’s not out of the woods yet, no celebrating yet.
Monday, December 28, 2009
Unwinding
We all went to grandma's 80th birthday party in Kinston. I remember I hadn't seen any of dad's side of the family in years, and dad had called me earlier that week and I didn't want to go. Dad had such a hard time that week and a bad day on Friday that he decided he wasn't going to go himself. I got up early that Saturday morning and called dad and asked him how he was and he said he was feeling a little better. I told him I wanted to go, and he perked up and we all went. Thank God we went... That was the last time he got to see his family and interact with them without being bedridden... None of use knew that he would be leaving us just a short 6-7 months later...
Dad started having serious problems with his digestive system back in February. He would feel fine for a few weeks and then suddenly, about an hour or so after eating, he'd be in pain. He's told me many times what it was like, but I still can't describe it completely. He'd be in this condition for approximately three days. In that three day period, he'd eat nothing but white rice or something very bland, or nothing at all. Then the episode would be over. He'd have at least two good weeks, then it would hit him again. Dad thought that it was food causing the problem. I can see how he'd think that, especially since it was the lack thereof that seemed to bring each episode to an end. His family doctor was apparently convinced of that as well. He was prescribed Prilosec. The doctor thought it was something simple. So for a brief time dad had started adding items of food to a list of things he couldn't eat anymore. He kept taking the Prilosec. The list grew exponentially as the weeks dragged on. His ability to taste things had changed. Salty foods were saltier, and sugary foods didn't taste as sweet. He went from being someone who absolutely enjoyed food, to someone who was begrudgingly intimidated by it. He put up with this until this vicious cycle of pain became a weekly occurrence.
In early September a new dynamic was added to his routine of weekly pain cycles. Dad had started throwing up at the beginning of these three, to now, four day bouts of pain. His family doctor had stopped treating him with Prilosec and was now sending him to different specialists. He had many tests run, but no one could find anything conclusive as to what was happening to him. He had a colonoscopy which showed things as looking normal. He had a endoscopy which did show that he had a peculiar fold in his stomach, which led to him having an ultrasound done. It was at this point that his family doctor discovered that his liver was badly diseased, which led to a diagnosis of cirrhosis of the liver. I was dumbfounded, dad had never had a drink of alcohol a day in his life. Apparently you don't have to drink to have cirrhosis of the liver.
I started driving dad up to Raleigh to a gastroentologist in early October. He was referred by his family doctor. Toward the middle of October we took him to Wake med. for a liver biopsy. The doctor there told us that the top half of his liver had a large "ballooned" pocket of old blood in it. I'm assuming that was what caused the fold in his stomach. We were also told that there were a few cancer cells found, but it was made to sound like it wasn't that big of a concern. We made one last trip to the gastroentologist. It was to discuss in further detail what had been found during the liver biopsy. I waited out in the car, I just didn't have it in me to wait alone in the waiting room. When I saw mom and dad walking out of the office I drove up to the curb to help dad into the car. At this point my dad was a very frail and emaciated man. After we were all safely in and ready to go I took a moment to look in the rear view mirror at mom, she was crying. Dad was very stoic and very quiet. As we pulled out of the parking lot and entered onto the highway I finally asked dad what was found. He didn't want to tell me. The cancer they had found in his liver was further along than they had originally thought. We all folded inward with grief.
In early September a new dynamic was added to his routine of weekly pain cycles. Dad had started throwing up at the beginning of these three, to now, four day bouts of pain. His family doctor had stopped treating him with Prilosec and was now sending him to different specialists. He had many tests run, but no one could find anything conclusive as to what was happening to him. He had a colonoscopy which showed things as looking normal. He had a endoscopy which did show that he had a peculiar fold in his stomach, which led to him having an ultrasound done. It was at this point that his family doctor discovered that his liver was badly diseased, which led to a diagnosis of cirrhosis of the liver. I was dumbfounded, dad had never had a drink of alcohol a day in his life. Apparently you don't have to drink to have cirrhosis of the liver.
I started driving dad up to Raleigh to a gastroentologist in early October. He was referred by his family doctor. Toward the middle of October we took him to Wake med. for a liver biopsy. The doctor there told us that the top half of his liver had a large "ballooned" pocket of old blood in it. I'm assuming that was what caused the fold in his stomach. We were also told that there were a few cancer cells found, but it was made to sound like it wasn't that big of a concern. We made one last trip to the gastroentologist. It was to discuss in further detail what had been found during the liver biopsy. I waited out in the car, I just didn't have it in me to wait alone in the waiting room. When I saw mom and dad walking out of the office I drove up to the curb to help dad into the car. At this point my dad was a very frail and emaciated man. After we were all safely in and ready to go I took a moment to look in the rear view mirror at mom, she was crying. Dad was very stoic and very quiet. As we pulled out of the parking lot and entered onto the highway I finally asked dad what was found. He didn't want to tell me. The cancer they had found in his liver was further along than they had originally thought. We all folded inward with grief.
Sunday, December 27, 2009
The purpose of this blog.
Our Family.
This blog is about my father’s battle with Cancer. It is my hope that through this process I will become a stronger person. This blog will also be a way of helping us to all remember after dad is gone. I know that afterwards, as time goes by, we will start to remember things less and less. It will soon be a clouded memory, one that stands out, but one that has few defining images. Our feelings will be on the surface of our skin and we will, all as a family, drift through the process of watching dad pass as if it were a dream. When he does pass, and the days unfold beyond him, we will be awake and none of this will seem real. Dad will guide us in his own way, and I know that I will personally be receptive to any changes that this may create within me.
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