shellybug68

My father passed away on Tuesday at around 8pm. My sister had fortunately made it earlier Tuesday so we were both at his side when his body finally let go. I am glad he is no longer in any pain but still am feeling really lost without him. My life has an empty space in it now. I have been caring for him for the past eight months and it is very strange to not have him here anymore. Hospice was wonderful and I am glad my sister is still here to go through grief with me.

I just wanted to thank everyone for their prayers and well wishes. The hospice nurse just left and told me that his decline is going fast and that it will probably only be a few weeks. She told me I should contact family members if they want to see him while he will remember it so they can say I love you and share memories because she said it may only be a few more days to a week before he is unaware and they will keep him comfortable. She said it will be peaceful as they will daily continue to watch his pain and increase as necessary. I am really not as taken back as I thought I would be at this time. I guess I have seen it coming and it will probably hit me worse later when he is gone. I have to be strong for my teenage son who is very close to him and my sister who is trying to get down here. Take care everyone. Shelly

Dad has been in quite a bit of pain lately and they have changed his meds to Cadian (sp?) a morphine based med because he can not seem to get his pain below a 8 with the Lortab. He was taking so much of the Lortab they began worrying about his Liver. He has been sleeping about 90 % of the day and has become incontinent with both bowels and urine. He stopped eating pretty much a few days ago. I have been trying to get him to eat here and there but its one bite here one bite there and then he just falls asleep during it. I am afraid he will choke, so I have stopped pushing it so much. His tumor on his esophagus has grown apparently because he is having problems just swallowing liquid and his meds. The hospice nurse also told us he has some lesions on his ribs which she figures is mets to the bones now. The hospice team has been circling my house now for the past few days on a regular basis and asking me about his DNR and Living will and then yesterday they had the chaplain come out. I am starting to think that they feel it wont be long and the nurse said all they can do now is just keep him comfortable. I have been here so many times now that I am prepared for it I think, but it still hurts to see him in so much pain and the decline has been so fast. He has become very confused and it is hard to understand him sometimes but I still try to hold his hand and talk to him time to time to let him know I am here. He said the other day when he was a little more together that he felt it was almost time. I have heard that some people do know when they are going to die. Have others experienced this? Well I just really wanted to give an update on what is happening with my father. I read the posts everyday. Knowledge is everything and this board always feeds my quest for that knowledge. I appreciate all of you. Take care, Shelly

I have now been caring for my father in my home since June. It was something I always knew I would do. I had no problem with it when my father was diagnosed stepping up to the plate and taking him in and rearranging my whole life to deal with his care. BUT now he is completely bedridden. He can not get up even to use the bathroom anymore, not even the bedside commode. It is bedpans and diapers. Hospice has been great about having a home health aide out five times a week and always making sure we have the supplies we need, but how do you all cope for such long periods of time. I have basically watched my father turn into something I dont recognize half the time. He talks to me differently and is so hateful sometimes. I know that it is this horrible disease that has made him so hateful but it doesnt help sometimes even though I know it. I think I am just wearing out. I have been cleaning him up all day because for some reason today he has not even bothered calling for the bed pan and has been messing all over himself. I just dont know if I can continue to do this. I feel horrible for even thinking some of the things I have been but I have been thinking them. I feel like I have been worn very thin. I have set up volunteers to get out of the house but then My father makes me feel guilty for going out, telling me before I walk out the door to not stay gone the whole time allotted because he is scared. How is a person supposed to go out and enjoy theirselves when that is the last thing said to them. Now it has gotten to where he has fallen a few times while I am out and that doesnt help either. My family members all tell me that I have done the best I can and that I should put him in a nursing home where someone can care for him better. I have a herniated disk and there are days when I have truly wished for him to say he wants to go into one. He refuses to have any more treatment and doesnt want to go back to the hospital or a home. I know it is only going to get worse from here on out so how in the world am I going to keep doing this??? Am I a horrible person for wanting to give up?? The worst part is I am not the only one it is affecting, It affects my fifteen year old son, and my husband too. They have bee great with help but we are watching our house turn into a hospital and watching our carpets being ruined by accidents caused by my father. I know that carpets can be replaced and things are only things but we just bought this house last year and everything was supposed to be so special for us and now it just doesnt seem so anymore. I am so sorry for rambling on about all this, I have only recently started reading the caregiver posts and I just didnt know where else to rant about this. I feel horrible because I have even wished my fathers life would end sooner than later for my own selfish reasons because I am so tired..... Thank you for listening .. Shelly

We brought my father home on Dec. 23rd and he was able to spend Christmas with us. His hospital bed is now in the living room and all his medical equipment right beside him. He is much weaker than when he was last home but he can at least get up and get on the bedside commode by himself and that is all we were waiting for to bring him home. He is much happier now that he is home. He still is complaining alot about everything. Sometimes it seems he complains just to complain. I just try to let it go in one ear and out the other because I know most of his anger is from this horrid disease not really from him. I know he loves me and is so grateful for my taking care of him. He tells me all the time when I have to set my alarm on husbands days off to come out and give him his pills. He tells me how good I am being to him but somedays I just feel like I am not good to him, like when I get frustrated by everything going on, or when he tells these lies and I have to tell him that it isnt true. I guess it all comes with the territory. My sister has started emptying out his place up north so that is one thing we wont have to deal with afterwards. I think Dad is giving up though, He doesnt want to get out of the bed much. We will tell him he should sit up on the side of the bed at least to eat but he wont. We tell him we will help him in the wheelchair and take him outside for some air but he doesnt want to go. I think it has become easier for him to just lay there in that bed and let the days go by. It is hard for me because I want to treat him like a toddler and tell him what to do but I know he is grown and can make his own decisions and if this is what he wants to do than I guess I have to live with it. Well friends, I just really wanted to let you all know that Dad has come home and so far we are hanging in there. Take care, Shelly

Dad is now in a rehabilitation center under skilled nursing care. It is really hard to tell how he is because one time I can go in there to see him and he is acting halfway normal and then other times he is way out there. They are trying to get him to do some rehab to get him strong enough to move from the hospital bed to the bedside commode and back in bed with assistance but so far he is fighting them with the rehab and he has fallen out of bed 4 times in the middle of the night after waking up and trying to get up and go to the potty only to realize his legs dont work anymore and boom he is on the floor. They have him on Decadron for the swelling in his brain and they did six treatments of radiation on the brain mets until he refused last Thursday to do anymore. I have been going to see him at the rehab center two or three times daily for a few hours each time, until this weekend. Friday I was diagnosed with upper respiratory infection and given antibiotics and I was told not to go see him for at least twenty four hours but I was so sick, I couldnt get out of bed, I was running a fever of 101 most of the weekend. When I went in to see him on Monday even though I still felt horrible but didnt want to be away from him any longer, He was all curled up in his bed and looked frightened and he started crying and told me he didnt think I was coming back. We then had to explain to him why he was there and what all has happened for the past two weeks because he didnt remember. It is so hard when he keeps going back and forth between knowing what is going on and then not knowing. The nurses tell us it is because of the brain mets. Last night I went in to see him and he was so hateful. He was complaining about everything and telling stories that I knew were not true about how they were abusing him and leaving him in his own bowel movements for two days and they were holding him against his will. He wants to come home so bad but Hospice told me he needs to get some rehab first so that it wont be so hard on me. I have a herniated disk and my father is a very large man and they are afraid if he isnt able to help out a bit with transfering that I will hurt myself or him. He has lost sixty pounds in two weeks and it makes me feel so horrible and guilty when he is being this way about being in there. I dont know what to do. I think about bringing him home because I sure dont want him to die alone in there but at the same time if he isnt going to die anytime soon, I think he does need to get stronger. Does that make any sense? I am so torn with what to do and my sister had to go back home for now. So I have to make all the decisions on my own. It is just so hard because I never know how he is going to act or what he is going to do. Has anyone else had these experiences with someone with brain mets and what am I looking at now? I have tried looking to see others experiences with brain mets but dont have an awful lot of time to look all the time so decided to ask everyone. Sorry I just sat here and complained all night about this. Take care, Shelly in Florida

My dad went into the emergency room for kidney stones which he was experienced with having had them before. While getting xrays and ultrasounds for that they found a 6cm abdominal aortic anuerysm (spelling?) and he stayed for a few days and they sent him home. He returned for follow up to the physician from the hospital and after a lot of walking around ended up having to call an ambulance because his left leg had swollen to twice its size and his testicles were also swollen which made it impossible for him to walk. They admitted him and said he had DVT. After several cat scans, xrays etc... they did a brochoscopy and found that he had the lung full of small cell. They also found the large tumor on his left side in the iliac nodes of his leg. This tumor was supposed to cover his whole left side from lung to leg. Looking back on it now, Dad had a cough for a long time, a year or so that he kept putting off as a bad cold and he swore he had lymes disease. Dad never was one for going to the drs office. He always put everything off until it was emergency room material. I know I couldnt have changed his mind but I wish I had tried harder to get him to check out the cough, maybe we would have had more time if we caught it earlier. Shelly

Well the doctor had to call 911 from his office and they admitted him to the hospital yesterday. Seems that Dad has multiple lesions on his brain. Is this cancer or something else?? So far they havent really giving us options but Dad is really looking bad. he has gotten so weak that he can not stand on his own or hold up his own weight in the bed or a chair. He cant keep anything down. They have him on an I V for fluids but he keeps vomiting so now they are planning to give him plasma. Last night he started having blood clots in his vomit. This doesnt sound good to me. At first hospice was saying that he may not make it through the night and I rushed home to call my sister and make arrangements for her to fly in from up north but couldnt get her in until this morning. I am fixing to go to the airport now. So far Dad is still hanging in there. He was comfortable when I left him last night at 10pm. He was sleeping and they said that they were going to just keep trying to hydrate him and would call me if anything changed. So I am hoping that he holds on until I get my sister there. I will be in and out today to the hospital but will check occasionally to see if anyone has any info on the lesions. I just havent had the time to research it yet. I am so glad I can come here to vent and get info. Thanks guys............Take care, Shelly

Well the doctor had to call 911 from his office and they admitted him to the hospital yesterday. Seems that Dad has multiple lesions on his brain. Is this cancer or something else?? So far they havent really giving us options but Dad is really looking bad. he has gotten so weak that he can not stand on his own or hold up his own weight in the bed or a chair. He cant keep anything down. They have him on an I V for fluids but he keeps vomiting so now they are planning to give him plasma. Last night he started having blood clots in his vomit. This doesnt sound good to me. At first hospice was saying that he may not make it through the night and I rushed home to call my sister and make arrangements for her to fly in from up north but couldnt get her in until this morning. I am fixing to go to the airport now. So far Dad is still hanging in there. He was comfortable when I left him last night at 10pm. He was sleeping and they said that they were going to just keep trying to hydrate him and would call me if anything changed. So I am hoping that he holds on until I get my sister there. I will be in and out today to the hospital but will check occasionally to see if anyone has any info on the lesions. I just havent had the time to research it yet. I am so glad I can come here to vent and get info. Thanks guys............Take care, Shelly

Well after getting everything squared away for a bit with the pain meds now we are having more problems. Dad started having headaches a bit ago and now for the past 5 days they have been so severe he is vomiting from pain. He doesnt want to eat much and has been acting kinda loopy. The hospice nurse came out Thursday and increased his pain meds a little and said that he was retaining quite a bit of water so put him on Lasix twice a day. She had to come back out yesterday because his pain has not improved. They now have him on liquid morphine out of the comfort pack that they have had sitting in my refrigerater for months. So far both the nurse and doctor are not sure what is causing his headaches but have told me it could be mets to the brain. It is so very hard to see him become weaker each day and to be in so much pain that I dont seem to be able to do anything about. They also heard some wheezing in all his lobes so they brought over a nebulizer and he is supposed to be doing that 4 times a day but so far we have only done two treatments because he just is in so much pain he doesnt want to bother with them. Most of the time he acts as if he is somewhere else, he talks about stuff that we are not talking about at the time and he keeps telling us that he thought he did something when he actually didnt and then complains to us about what he did and we have to explain to him that he didnt do anything. I know that probably didnt make any sense but that is basically the way Dad is acting. He isnt making a whole lot of sense to me. My husband is worried that we may be getting close to losing him but I keep thinking it is just something else causing it. I guess I dont want to let go of him yet but at the same time, I dont want him to have this pain everyday either. We have to wait until Dec. 3 to actually see the Oncologist but I dont think my dad would even feel like going into his office any earlier anyway. He is on oxygen most of the day and getting up and down has become a chore. They brought over a urinal and are supposed to start sending a home health aide to assist in bathing him because I told the nurse he wasnt showering as much because of the pain. It all just seems to be happening so fast. I dont know what else to do for him. Right now he remains in the recliner in my living room all the time. We have a hospital bed and I am wondering if he would be more comfortable if we moved him in there but at the same time dont want him to think we are just trying to hide him in the bedroom. It has always been understood that he would need the bed soon but he refused to use it. He has always slept in a recliner in the living room even at his own house and has been doing so here at mine. I just feel like I am interrupting his sleep most of the day and know that he is getting to the point that he will be more comfortable if he was just in his skivvies or something and know he wont do that in the living room. OK so now I am just rambling but I guess I really just needed somewhere to express all of my emotions and youse guys are always so great here. Any suggestions would be much appreciated. Thanks for listening friends. Take care, Shelly

My father is on Coumadin too. They have a lot of problems getting his levels where they want them. For months his levels stayed in the 1.3- 1.5 area and he went as high as 15mg daily. Thankfully they have now settled to about 2.1 and he has been taking 11mg daily for about a month. He gets his levels checked weekly. Dad worries about how much he takes too because it seems everyone in the office is only taking around 5 - 7mg. I guess it is due to his large body size. Take care, Shelly

Dad is now experiencing pain in his ribcage area on the side that his lung that was full of cancer. He has been having a little bit of pain there and we used to think it was from the chest tube he had put in during May and June while he was hospitalized, but it has progressively gotten worse and he now says it is worse than the pain he has in his left leg from the DVT. We have told the Oncologist about it and he hasnt given us an answer but said he would hold off on new scans til after the first of the year and we told hospice about it and she said Dad needed to consider something more for pain again. I guess my question is, does anyone know of a reason he would be having this pain? My suspicion, no matter how hopeful I am trying to be is that the cancer is growing back with a vengence (sorry spelling not sure??). He has been complaining about it more and says that when he takes a breath it hurts him really bad. His chest remains clear when they listen. Well have a doctors appointment of my own today to deal with, just wanted to post that question. Take care all. Shelly

Well, Dad finally told the hospice nurse that he wasnt going to take the Oxy anymore. He told her his pain was worse with it and the pain wasnt cancer related. They agreed and said maybe his body just isnt able to accept Oxycotin. SO they put him back on the Vicodin (hydrocodone) and adjusted his dose so he can take it every 4 hours. His bowel movements have returned to normal and now he is more alert. He still is tired a lot but at least he isnt agitated and angry about being on the Oxy. He said his pain is back but its deep within his bone in his leg and that he will tolerate it. I am just glad he finally told the nurse. He would get so upset and tell me about it, but I kept telling him if he doesnt tell them, I cant do anything but suggest things for him. We go to the Dr next wednesday and my sister is coming for a visit next week so hopefully that will bring his spirits up and he will fight this all the way. I was really afraid he was giving up with this whole Oxy thing. He kept telling me that he felt like it was close to the end. Thank you all for your replies, it is always nice to know that others are in the same boat, even though I wish none of you were.Take care, Shelly

Dad has been seeiing his Onc once a month now and goes in once a week for his PT/INR tests. Hospice has switched his meds for pain to Oxycotin because he told them he needed to take the hydrocodone every 4 hours instead of every 6 and they were worried that it would start to affect his liver. They said he needed a stronger pain med, which I agreed with them because he was complaining to me that his pain was coming on quicker. The first few days of taking the Oxycotin he was great, said he had no pain and was very energetic which these days I was happy for, He has been so tired since all the chemo started and ended. But, now he is having problems with bowel movements. The hospice nurse said that the oxycotin does cause some constipation so they put him on Senna and told him to adjust the dose up to three pills twice a day depending on his body's needs. After 4 days of not going, I had to call the nurse out and they had to do an enema for him. He went and they told him to continue to take the senna and to start taking Sorbitol everytime he took the oxycotin. He has been but still it takes him about two days of straining and being miserable to finally have a movement. They keep increasing the amounts of these laxatives because he isnt improving but all he keeps doing is sleeping because he is in a lot of pain and says that when he sleeps he doesnt feel it. He says he has more pain now that he did before. The problem for me is I dont know whether it is the oxycoting that is causing all of the problems or if he is just getting worse from the cancer itself. How do I tell? We go to the doctor next Wednesday and usually Dad doesnt offer too much information but I intend to question the doctor about all of this. I keep telling him to just tell the nurse that he doesnt want to be on all of this anymore because he gets agitated and tells me but I tell him he needs to tell them not me because I cant tell him to stop taking the meds or not. They have increased his Zoloft and whenever I call the nurse because he is in pain, they tell me to have him take another Ativan ( think that is how it is spelled) to relax him. Usually when he does he does calm down and manages to go to the bathroom but I just am really lost at what to do now. My husband says he notices little things that make him believe he is getting worse, but Dad keeps saying its the meds. I dont know what to think it is. Any suggestions or is anyone in the same boat or has experienced this kind of things. Thanks, Take care, Shelly

I just wanted to let youse guys know that there is a fellow jerseyite online here. I don't live there anymore, but was born in Camden as well as my mom and dad, sister was born in Mount Holly, and I spent a few of my childhood years up til the 8th grade in Marlton. My grandmother still lives in Marlton. It amazes me how much it has grown through the years. I return for visits often as I still have lots of family in the south jersey area. I know it really doesn't have anything to do with your posts but just wanted to say how small a world it is. Take care all.

Just found this board and need some support. I am now taking care of my father in my home. This is all new to us since he was only recently diagnosed. I am still learning all the terms. So far the research on sclc I have done is pretty depressing and just need to know what I am looking at. I know it is different for everyone but I think hearing some other stories of others with this type of cancer will help me understand it. I am a very analytical type person and like to make sense of everything. My father is 60 and was a smoker for over 40 years and also worked as an auto mechanic being around asbestos for many years. He went into the emergency room for kidney stones and found out he has oat cell cancer of both lungs, AAA, and DVT. His Onc here referred us to hospice and it is my understanding that this is for the last six months of life so I am confused because Onc doesnt really give us a prognosis or any sort of time. I guess I am just lost as far as what is ahead and I like to know definate things. His doctor from up north and the hospital stated that his cancer had spreads to a tumor in his left side which is pressing on his lymph nodes and the iliac of his leg which isnt letting the blood clot in his leg go. He just had some more bone scans and CT scans and the Onc said that his cancer is shrinking but what does this mean? My father keeps talking like he is going to be cured and I hate being so pessimistic because usually I am optimistic but from what I have read, I dont think it goes away completely. Am I right? Well dont want to go crazy on my first post so I just wanted to say hello and get the feel of being here. Take care all, Shelly