The Caregiver
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magicwolf
Member Posts: 16
The CareGiver
He was my best friend and he had no family after his brother was found dead from a boat accident. He had always been there for me when I needed him. Like the time I need a place to live and didnt have enough money for the deposit or to get the lights turned on. Yeah he was the man! Or when I needed 3 grand to buy that really cool buick hearse I couldnt live without. A very quiet guy never really that outspoken but piss him off and by god you knew where you stood. Problem was he never could say no to people and they took advantage of him. Tenants would move into one of his rentals and he would give them a break and not worry too much about them if they got a month or five behind in rent or needed to borrow money for a lawyer or bail. He was always there to help. And they would invariably always move out and stiff him on the money everytime. Did he lose faith in humanity nope. He was always willing to give a guy or gal the benifit of the doubt. He owned 2 very large old farm houses and one was split into up and down duplex. He lived alone in the other more or less a recluse. His entire life pretty much revolved around those two old houses and the 23 acres that went with it. Oh and his cabin in wisconsin. His dad was a prominent surgeon and left him well to do. Most of his time was spent split between the two properties. I worked with him side by side for 10 years on these two old farm houses. We did it right! We pulled any bad cedar siding and replaced it with new, every board was stripped down to bare wood. Took us five years apiece to paint just the outside working all summer long. We worked long and hard but it sure helped pay the rent. I had started having medical problems in 2005 and slowly my ability to put as many hours in was going away. In around 2007 I started noticing when he would return from wisconsin he was losing weight. He said he just didnt have an appetite like he used to and not to worry. Well after a year of him losing weight I became concerned even more and ask him to see his MD. He refused and said he was fine. In early 2008 I noticed he was having slight breathing changes and offered him a puff on my inhaler. We just figgured it was emphazema setting in from years of smoking. He also quit smoking at this time Well as time went on that summer he got worse and he was having symptoms of pneumonia. He finally went to the doc in Jan 09 after I threatened to kidnap him and force him to go. They diagnosed him with pnuemonia and emphazema and put him on a run of antibiotics and inhalers. Well he continued to have breathing distress and it was getting worse. I finally made him go back to the doc in march of 09 and they again put him on a different run of antibiotics for 7 days. And ran some other tests. When the other tests came back they were cancer free. They decided they were going run additional tests. They stuck him in the hospital and this is where my caregiver role actually started. Until then he had been on this quest alone. I started taking him to the doctor and just kind of giving him moral support. Since we worked side by side I started noticing he wasnt quite as active as he normally was. His breathing was comming harder and he was taking lots of breaks just doing simple things. Since I was already somebody who had breathing problems I was well aware of the signs of his distress becoming much worse. Well the call came from the hospital and the results of the biopsy was benien and cancer free. Of course we were excited and confused at the same time. Well two hours later the second call came in that the other test they ran showed signs of cancer on the lung that had metasizised to the brain. Of course we were devistated. We gathered ourselves up and He made the decision that he would do the treatments and see what happened. Now something I havent mentioned yet is he has no insurance at all and is too young to be on SS. The first plan was radiation for the lungs and brain at the same time. They did one round of that and then changed to brain only and we did 16 rounds of brain rads. During this whole time he continued to lose weight. By now he had gone from 160lbs to maybe a strong 110 lbs. He seemed to get thru the rads ok with just a bit of additional distress. And of course the side effects of radiation are not pretty. Hair loss inside out sunburn loss of appetite all the good stuff. We then moved on to the first round of chemo. Up to this time he was able to move around pretty good and do things by himself just had to move a bit slower and be more careful. His breathing at this time had become very labored and this restricted him somewhat on his activities. During this time I had been taking him to all his appointments as they had him on an antiswelling steroid for the brain and didnt want him driving for fear of seizures. My caregiver status had gone from being a good friend to a daily responsibility. I noticed at this time that he was really slowing down on his activities and anything physical. His breathing distress was becoming much worse at this time. As his health failed more my responsibilities became more and more because I had to take up the slack where he couldnt do it anymore. things like mowing the very large yard we have and just general maintenence of the acreage. At that time I was able to somewhat keep up because he was able to do a few things and was still mobil on his own. When we didnt have a docs appt we still had errands that had to be run such as groceries pharmacy post office. etc. since he couldnt drive these things also became my responsibility which I gladly accepted. He had always been there for me and by god I was gonna be there for him. At this time I suggested he use oxygen for his breathing distress which he stubbornly refused. I even brought over to his house a couple of my cylinders. to try and just see if they would help. He ignored them for close to 2 months. Well then the wonderful world of chemo began. Keep in mind by now he had lost probably 40% of his body mass already. The first round seemed to go well minimal nausea, no pain no real symtoms at all. except he started getting weaker and noticing things were tougher to do. Like going to the store or pharmacy when usually he would go in and get what he need he would ask me to do it for him. Simple things like carrying a grocery bag became hard for him. again I gladly took over that responibility for this also. I also noticed one day that the oxygen I had taken to him was sitting near where his computer was. He said he was just sampling it to see what it would do. In the mean time I was trying to keep up with the lawncare and keeping up with chores around the place which is by the way a full time job for 1 1/2 people. So I was pretty busy and keep in mind I'm also considered 100% disabled also. About this time I also got a call from my ex girlfriend who was basicly homeless and needed a place to stay for her and her 3 month old puppy. Now we broke up because we couldnt live together so this was not a pretty picture for me to consider. Being the compasionate guy that I am I said yes she could stay for a couple days till she found a place. Oh boy more on my plate. And of course I had to fit in a trip to chicago to pick her up at the airport. At which time she informed me she had lost her wallet. So of course that meant no debit/credit cards for motel no ready cash no nothing But a suitcase and a puppy to deal with. Now normally this would really not be that big of deal but hey with everything else on my plate it was a bit much to say the least. And to this point the only one dealing with my friends illness was me. Enter second round of chemo. By this time the first round had pretty much zapped and energy he had and his breathing was really becomming distressed. At this time I begged the doctor to do something about it and he said it is what it is and nothing could be done. I started contacting every organization I could find and joined the survivors network and my god what a great group of people. Real lifesavers for sure. But they still were not other humans in the flesh to hug and cry and hold during those times you just didnt know what to do. Finally I had had enough and told him we were getting him oxygen. I called the doctor and the doctor ordered it that day and we had a concentrator installed that night by 5. I expected great changes with him finally getting oxygen but all that seemed to happen is he went from not using it by choice to panicing if he didnt have it. No real change in activity or feeling relived concerning his breathing just had to have it or went into a panic attack. He became bedridden after chemo round number 2 and almost totally incapable of doing anything. All of a sudden my life took a massive turn to 24 hour caregiver and visiting nurse and maid and anything else that can be imagined. It didnt take long with all the things around me going on I pretty much went into overload. And needless to say his demeanor wasnt the best during all this I'm sure from fear and frustration and just plain being sick and tired. He was angry at the world and guess who got to hear it. I have to say he tried so hard not to be an arse but it was almost impossible. I had to start making desicions for him and trust me thats incredibly hard. As we progressed into summer and it got hot he had never had air conditioning in his house. Well I made the decision I was not going to sit in this hot enviornment and try to care for this man who had become so thin he could hardly hold himself up by himself. 59 years old and dying and I'm right in the middle of it all, Needless to say when I signed up for being friends this was not in the fine print I swear! I had to start learning about symptoms and side effects and chemo and rads and mets and all these terms that I never heard of let alone wanted to add to my collection of verbal knowledge. I was totally lost and went to the CSN chatroom nightly pitching my woes and they politly listened and tried to give me what support they could and who to contact etc. But ya know what. There just aint enough hours in the day to do all this stuff alone period. And anybody going thru this please listen to me when I say that. It will consume you it will ruin you if you let it and it will drive you mad. As of todays date my friend is totally bedridden and I'm not sure how much longer he will be with us but I do know as long as I am able I will be there for him and do whatever I can to help him. As of this writting I am also finally getting some help from a good friend of his and thier family with nursing care and odds and ends like a microwave oven and room size fridge things to make his and my life much easier. They have come in and done some cleaning which was sorely needed and a neighbor has offered assistance who is a retired lpn. All at no cost which is wonderful. I gotta say tho he has lived a life of being a tightwad and its maybe paying off now maybe not. Simple things like air conditioning are having to be purchased and installed. Crap that has fallen in disrepair is having to be fixed by professionals now instead of being done before when it was possible for him to just do it. And I just cant do it anymore either. Do I feel guilty, somewhat but I'm only human. He has a tendency to get angry at me and right now sadly I dont care it has to be done and I'm doing it. He is in surrender mode right now and thats probably good. After round two of chemo we waited 2 weeks for the results to come back from the scans. Well the news was good and bad. Tho some of the cancer was shrinking some was staying the same and it had also shown signs of moving to the bone. Also the labs showed he was extremely anemic so an infusion of blood was ordered for the next day. At this time i tried to tell the doctor that his breathing was really distressed and did he think we should get a nebulizer. He refused and said thats just something that goes with the cancer is bad breathing. I tried again in vain to get him to treat his breathing distress and pay a bit more attention to his raspy breathing. It was raining and storming the day we went for the infusion and it took almost an hour to get him loaded in the truck to go. thank god for Becki(the lpn friend) being available to come at the drop of a hat to help me load him. Well we made it to the hospital for the infusion late but it went off without to much hassle. As we were leaving we got about to the elevator and he had me stop because his breathing was getting worse. He seemed really in bad distress and I ask him if he wanted me to get help. He nodded in the afirmative so I grabbed the first nurse I could see and they took him into the closest room and started an IV and an ekg. His heart was going nutz and it was beating very irregular. Well they rushed us right to the ER and we were attended to right away. After four hours of tests and xrays etc. they decided he was to be admited to the stepdown unit of the cardiac wing. It was then determined during the next few days that some of his problems all along was his heart causing the shortness of breath and the horrible feelings he was having. They also determined his lungs were full of liquid. After four days in the hospital getting breathing treatments and lazicks for fluids he started feeling much better even to the point of taking the oxygen off for periods of time and it was time to bring him home. He was able to stay home a whole 5 days before we had to take him back to ER. They imediatly put him back in the hospital now on the oncology ward. Well it was time for a decision! Take him home again and deal with it or put him in hospice and get him built up weight wise and gain him some strength. The docs said he was beating the cancer but he was just so thin and weak they didnt know how much longer he could fight. Well two days before we were to go to hospice he made that decision for us. He told me he would not be going to hospice. I ask him what he meant. He just smiled and said you know. The day we were to move him to hospice he crashed at about 7 in the morning and went downhill really fast. The docs prognosis went from 2 weeks to hours and the wait began. They induced a morphine coma and we sat by his side and waited for his time to come. Many times myself and Al his other best friend would go take a walk and reflect on our lives with our good friend Jim. Seemed like every time we came back to his side he would give us a knowing twitch thats said I know you guys are here for me. About nine we had been out taking a break and when we got back to the room he was very frantic and thrashing around. i called the nurse and they came in and upped his morphine drip. He calmed down and in a matter of 30 minutes was gone. He went very peacefully and I am so glad. He was one hell of a friend and even tho I went thru pure hell being his caregiver he took very good care of me in the end. And for that I gotta say "Jim I love you my friend and thank you for being in my life" Everyday since we lost jim I relize just what a great friend he was and how much I will miss him. If what they say about heaven is true my friend Jim is up there ice fishing and pulling that trophy walleye thru the ice! Or he is out there riding his harley wearing those goofy tanned farmer gloves that I always gave him hell about. Ride Free my brother Jim and thank you for being there when nobody else was!
He was my best friend and he had no family after his brother was found dead from a boat accident. He had always been there for me when I needed him. Like the time I need a place to live and didnt have enough money for the deposit or to get the lights turned on. Yeah he was the man! Or when I needed 3 grand to buy that really cool buick hearse I couldnt live without. A very quiet guy never really that outspoken but piss him off and by god you knew where you stood. Problem was he never could say no to people and they took advantage of him. Tenants would move into one of his rentals and he would give them a break and not worry too much about them if they got a month or five behind in rent or needed to borrow money for a lawyer or bail. He was always there to help. And they would invariably always move out and stiff him on the money everytime. Did he lose faith in humanity nope. He was always willing to give a guy or gal the benifit of the doubt. He owned 2 very large old farm houses and one was split into up and down duplex. He lived alone in the other more or less a recluse. His entire life pretty much revolved around those two old houses and the 23 acres that went with it. Oh and his cabin in wisconsin. His dad was a prominent surgeon and left him well to do. Most of his time was spent split between the two properties. I worked with him side by side for 10 years on these two old farm houses. We did it right! We pulled any bad cedar siding and replaced it with new, every board was stripped down to bare wood. Took us five years apiece to paint just the outside working all summer long. We worked long and hard but it sure helped pay the rent. I had started having medical problems in 2005 and slowly my ability to put as many hours in was going away. In around 2007 I started noticing when he would return from wisconsin he was losing weight. He said he just didnt have an appetite like he used to and not to worry. Well after a year of him losing weight I became concerned even more and ask him to see his MD. He refused and said he was fine. In early 2008 I noticed he was having slight breathing changes and offered him a puff on my inhaler. We just figgured it was emphazema setting in from years of smoking. He also quit smoking at this time Well as time went on that summer he got worse and he was having symptoms of pneumonia. He finally went to the doc in Jan 09 after I threatened to kidnap him and force him to go. They diagnosed him with pnuemonia and emphazema and put him on a run of antibiotics and inhalers. Well he continued to have breathing distress and it was getting worse. I finally made him go back to the doc in march of 09 and they again put him on a different run of antibiotics for 7 days. And ran some other tests. When the other tests came back they were cancer free. They decided they were going run additional tests. They stuck him in the hospital and this is where my caregiver role actually started. Until then he had been on this quest alone. I started taking him to the doctor and just kind of giving him moral support. Since we worked side by side I started noticing he wasnt quite as active as he normally was. His breathing was comming harder and he was taking lots of breaks just doing simple things. Since I was already somebody who had breathing problems I was well aware of the signs of his distress becoming much worse. Well the call came from the hospital and the results of the biopsy was benien and cancer free. Of course we were excited and confused at the same time. Well two hours later the second call came in that the other test they ran showed signs of cancer on the lung that had metasizised to the brain. Of course we were devistated. We gathered ourselves up and He made the decision that he would do the treatments and see what happened. Now something I havent mentioned yet is he has no insurance at all and is too young to be on SS. The first plan was radiation for the lungs and brain at the same time. They did one round of that and then changed to brain only and we did 16 rounds of brain rads. During this whole time he continued to lose weight. By now he had gone from 160lbs to maybe a strong 110 lbs. He seemed to get thru the rads ok with just a bit of additional distress. And of course the side effects of radiation are not pretty. Hair loss inside out sunburn loss of appetite all the good stuff. We then moved on to the first round of chemo. Up to this time he was able to move around pretty good and do things by himself just had to move a bit slower and be more careful. His breathing at this time had become very labored and this restricted him somewhat on his activities. During this time I had been taking him to all his appointments as they had him on an antiswelling steroid for the brain and didnt want him driving for fear of seizures. My caregiver status had gone from being a good friend to a daily responsibility. I noticed at this time that he was really slowing down on his activities and anything physical. His breathing distress was becoming much worse at this time. As his health failed more my responsibilities became more and more because I had to take up the slack where he couldnt do it anymore. things like mowing the very large yard we have and just general maintenence of the acreage. At that time I was able to somewhat keep up because he was able to do a few things and was still mobil on his own. When we didnt have a docs appt we still had errands that had to be run such as groceries pharmacy post office. etc. since he couldnt drive these things also became my responsibility which I gladly accepted. He had always been there for me and by god I was gonna be there for him. At this time I suggested he use oxygen for his breathing distress which he stubbornly refused. I even brought over to his house a couple of my cylinders. to try and just see if they would help. He ignored them for close to 2 months. Well then the wonderful world of chemo began. Keep in mind by now he had lost probably 40% of his body mass already. The first round seemed to go well minimal nausea, no pain no real symtoms at all. except he started getting weaker and noticing things were tougher to do. Like going to the store or pharmacy when usually he would go in and get what he need he would ask me to do it for him. Simple things like carrying a grocery bag became hard for him. again I gladly took over that responibility for this also. I also noticed one day that the oxygen I had taken to him was sitting near where his computer was. He said he was just sampling it to see what it would do. In the mean time I was trying to keep up with the lawncare and keeping up with chores around the place which is by the way a full time job for 1 1/2 people. So I was pretty busy and keep in mind I'm also considered 100% disabled also. About this time I also got a call from my ex girlfriend who was basicly homeless and needed a place to stay for her and her 3 month old puppy. Now we broke up because we couldnt live together so this was not a pretty picture for me to consider. Being the compasionate guy that I am I said yes she could stay for a couple days till she found a place. Oh boy more on my plate. And of course I had to fit in a trip to chicago to pick her up at the airport. At which time she informed me she had lost her wallet. So of course that meant no debit/credit cards for motel no ready cash no nothing But a suitcase and a puppy to deal with. Now normally this would really not be that big of deal but hey with everything else on my plate it was a bit much to say the least. And to this point the only one dealing with my friends illness was me. Enter second round of chemo. By this time the first round had pretty much zapped and energy he had and his breathing was really becomming distressed. At this time I begged the doctor to do something about it and he said it is what it is and nothing could be done. I started contacting every organization I could find and joined the survivors network and my god what a great group of people. Real lifesavers for sure. But they still were not other humans in the flesh to hug and cry and hold during those times you just didnt know what to do. Finally I had had enough and told him we were getting him oxygen. I called the doctor and the doctor ordered it that day and we had a concentrator installed that night by 5. I expected great changes with him finally getting oxygen but all that seemed to happen is he went from not using it by choice to panicing if he didnt have it. No real change in activity or feeling relived concerning his breathing just had to have it or went into a panic attack. He became bedridden after chemo round number 2 and almost totally incapable of doing anything. All of a sudden my life took a massive turn to 24 hour caregiver and visiting nurse and maid and anything else that can be imagined. It didnt take long with all the things around me going on I pretty much went into overload. And needless to say his demeanor wasnt the best during all this I'm sure from fear and frustration and just plain being sick and tired. He was angry at the world and guess who got to hear it. I have to say he tried so hard not to be an arse but it was almost impossible. I had to start making desicions for him and trust me thats incredibly hard. As we progressed into summer and it got hot he had never had air conditioning in his house. Well I made the decision I was not going to sit in this hot enviornment and try to care for this man who had become so thin he could hardly hold himself up by himself. 59 years old and dying and I'm right in the middle of it all, Needless to say when I signed up for being friends this was not in the fine print I swear! I had to start learning about symptoms and side effects and chemo and rads and mets and all these terms that I never heard of let alone wanted to add to my collection of verbal knowledge. I was totally lost and went to the CSN chatroom nightly pitching my woes and they politly listened and tried to give me what support they could and who to contact etc. But ya know what. There just aint enough hours in the day to do all this stuff alone period. And anybody going thru this please listen to me when I say that. It will consume you it will ruin you if you let it and it will drive you mad. As of todays date my friend is totally bedridden and I'm not sure how much longer he will be with us but I do know as long as I am able I will be there for him and do whatever I can to help him. As of this writting I am also finally getting some help from a good friend of his and thier family with nursing care and odds and ends like a microwave oven and room size fridge things to make his and my life much easier. They have come in and done some cleaning which was sorely needed and a neighbor has offered assistance who is a retired lpn. All at no cost which is wonderful. I gotta say tho he has lived a life of being a tightwad and its maybe paying off now maybe not. Simple things like air conditioning are having to be purchased and installed. Crap that has fallen in disrepair is having to be fixed by professionals now instead of being done before when it was possible for him to just do it. And I just cant do it anymore either. Do I feel guilty, somewhat but I'm only human. He has a tendency to get angry at me and right now sadly I dont care it has to be done and I'm doing it. He is in surrender mode right now and thats probably good. After round two of chemo we waited 2 weeks for the results to come back from the scans. Well the news was good and bad. Tho some of the cancer was shrinking some was staying the same and it had also shown signs of moving to the bone. Also the labs showed he was extremely anemic so an infusion of blood was ordered for the next day. At this time i tried to tell the doctor that his breathing was really distressed and did he think we should get a nebulizer. He refused and said thats just something that goes with the cancer is bad breathing. I tried again in vain to get him to treat his breathing distress and pay a bit more attention to his raspy breathing. It was raining and storming the day we went for the infusion and it took almost an hour to get him loaded in the truck to go. thank god for Becki(the lpn friend) being available to come at the drop of a hat to help me load him. Well we made it to the hospital for the infusion late but it went off without to much hassle. As we were leaving we got about to the elevator and he had me stop because his breathing was getting worse. He seemed really in bad distress and I ask him if he wanted me to get help. He nodded in the afirmative so I grabbed the first nurse I could see and they took him into the closest room and started an IV and an ekg. His heart was going nutz and it was beating very irregular. Well they rushed us right to the ER and we were attended to right away. After four hours of tests and xrays etc. they decided he was to be admited to the stepdown unit of the cardiac wing. It was then determined during the next few days that some of his problems all along was his heart causing the shortness of breath and the horrible feelings he was having. They also determined his lungs were full of liquid. After four days in the hospital getting breathing treatments and lazicks for fluids he started feeling much better even to the point of taking the oxygen off for periods of time and it was time to bring him home. He was able to stay home a whole 5 days before we had to take him back to ER. They imediatly put him back in the hospital now on the oncology ward. Well it was time for a decision! Take him home again and deal with it or put him in hospice and get him built up weight wise and gain him some strength. The docs said he was beating the cancer but he was just so thin and weak they didnt know how much longer he could fight. Well two days before we were to go to hospice he made that decision for us. He told me he would not be going to hospice. I ask him what he meant. He just smiled and said you know. The day we were to move him to hospice he crashed at about 7 in the morning and went downhill really fast. The docs prognosis went from 2 weeks to hours and the wait began. They induced a morphine coma and we sat by his side and waited for his time to come. Many times myself and Al his other best friend would go take a walk and reflect on our lives with our good friend Jim. Seemed like every time we came back to his side he would give us a knowing twitch thats said I know you guys are here for me. About nine we had been out taking a break and when we got back to the room he was very frantic and thrashing around. i called the nurse and they came in and upped his morphine drip. He calmed down and in a matter of 30 minutes was gone. He went very peacefully and I am so glad. He was one hell of a friend and even tho I went thru pure hell being his caregiver he took very good care of me in the end. And for that I gotta say "Jim I love you my friend and thank you for being in my life" Everyday since we lost jim I relize just what a great friend he was and how much I will miss him. If what they say about heaven is true my friend Jim is up there ice fishing and pulling that trophy walleye thru the ice! Or he is out there riding his harley wearing those goofy tanned farmer gloves that I always gave him hell about. Ride Free my brother Jim and thank you for being there when nobody else was!
0
Comments
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mw, I am so very sorry.
From talking with you in the chat room, I was always impressed with the way you made it clear that you did what you could for Jim because he was your friend. Not because you owed him (though you were grateful for the help he had given you), or because he was kin (no relation), or because it was in any way beneficial to you (you were obviously overwhelmed at times), but just because he was your friend. The Bible talks about 'laying down one's life for a friend'. I do not believe one must die for a friend in order to lay down one's life. I believe that to LIVE for a friend's benefit is more accurately what the Scripture referred to.
I hope you take pride in what you have done for Jim. And I hope you take comfort in the knowledge that you made his life richer and fuller than it could have ever been without you in it. And I hope you know that the world is a better place for people like yourself who are willing to do what you have done, rare though they be.
I am blessed in 'knowing' you, mw.0 -
MWzahalene said:mw, I am so very sorry.
From talking with you in the chat room, I was always impressed with the way you made it clear that you did what you could for Jim because he was your friend. Not because you owed him (though you were grateful for the help he had given you), or because he was kin (no relation), or because it was in any way beneficial to you (you were obviously overwhelmed at times), but just because he was your friend. The Bible talks about 'laying down one's life for a friend'. I do not believe one must die for a friend in order to lay down one's life. I believe that to LIVE for a friend's benefit is more accurately what the Scripture referred to.
I hope you take pride in what you have done for Jim. And I hope you take comfort in the knowledge that you made his life richer and fuller than it could have ever been without you in it. And I hope you know that the world is a better place for people like yourself who are willing to do what you have done, rare though they be.
I am blessed in 'knowing' you, mw.
you are awsom.
michelle n0
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