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.
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