Remembering Dave Posted March 2, 2005 Share Posted March 2, 2005 Well, one of the docs put Dave on oxycontin for the pain - 20 mg twice a day I think it is. It is totally doing a number on him. Just totally out of it. Like someone really really drunk. Can't remember what meds he's taken, if he fed the dogs (within the last hour), etc. So I made up a little notebook to keep with his prescription meds so every time he takes one he, or me, or one of his parents, can write down the time. I think he may have taken more than he was supposed to yesterday so hopefully the chart will stop that. I put all the supplements I've got him on now in those Monday-Sunday pill boxes so he won't forget to take those throughout each day. I've asked his Dad to walk the dogs every few hours in case Dave forgets to and they end up in the house all day long. I just WISH I could be at home with him more, but I can't. I have to work. I hate that the's on the oxycontin, it makes it feel like he is slipping away, and he's just slipping away mentally. but nothing else has helped his pain it seems. I am really just venting, but what is others' experience with how their loved ones did on these strong painkillers? thanks, Karen Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted March 2, 2005 Share Posted March 2, 2005 Karen, first hugs to you! Second, we did the similiar thing with my mom...put her medication name, dosage amount and amount of times per day into a spreadsheet. Then whenever she took some we would mark it down. It was very helpful to have to make sure she wasn't getting too much. We also could take it with us to the oncologist to show her what my mom had taken. My mom became a little "foggy headed" with it, but the pain was manageable. She figured that was the better alternative. My thoughts continue to go out to your family. Blessings. Quote Link to comment Share on other sites More sharing options...
Terrie Posted March 2, 2005 Share Posted March 2, 2005 Don't have any input, just wanted to send you a (((HUG))). Quote Link to comment Share on other sites More sharing options...
Addie Posted March 2, 2005 Share Posted March 2, 2005 Karen... I took Oxy sporadically for a week, prior to the dx of my recurrence. Never did take as much as the doctor said I could....and mine say 5/500 CAP....so am not sure how many mgs that is??? But the only problem I had (and I never took more than 2 in one day and didn't TAKE them every day....only as needed when my gut was really bad) was constipation. They can really bind you up....so make sure Dave gets plenty of fiber!! Lots of times for lunch, I don't want a lot to eat and Triscuit crackers are a pretty good source of fiber, so I eat a handful of those with some soft cheese....which is good protein!! I wonder if David would still find pain relief IF he cut down one pill in what he's taking? But if there is ANY chance, in taking his own meds, that he is forgetting and taking MORE Oxy than was prescribed.....boy, I'd be hiding ALL his meds and making sure someone else doles them out to him when they're needed. Don't leave David access to any meds if he's half la-la and not sure what he's doing. You don't want an overdose disaster on your hands!! Maybe you should recheck w/ the docs on his Oxy dosage...and be sure the docs know EVERYTHING ELSE he takes.....even supplements....so there is no problem with any drug interactions, eh? Keep us posted on how he's doing....but get the meds....all of them...OUT of David's access unless/until you are sure he's not doubling up, even accidentally! Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted March 2, 2005 Share Posted March 2, 2005 Karen, Sorry to see that the meds are making Dave so forgetful. But glad that the meds are helping with the pain. That's a good idea to write down or check off what meds have been taken. It's good that Daves parents are here and can help. Please keep us posted. My thoughts and prayers are with you. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted March 2, 2005 Author Share Posted March 2, 2005 Addie - I wrote down all the supplements and took the list to the nurse practitioner on Tuesday - yesterday - we went over everything and she approved them all. by the way, he went in for chemo yesterday and couldn't get it b/c his platelett count was 90,000 and it had to be 100,000. that was disappointing. I put the little notebook in the drawer right with his drugs, laid it on top of them in fact, and this morning he did write down what he took, before I left for work. If I feel this isn't working I will give the drugs to his parents and ask them to dole them out to him and record them. They just got here on Monday and aren't quite up to speed on the situaton I don't think - quite a shocking thing - and I'm not sure they completely understand but I wrote them a nice detailed email with instructions about his drugs, eating, checking on him often, etc. so we'll see how it goes. they brought their gigantic fifth wheel trailer to live in and they tend to stay out there doing their thing and leave Dave be in the house doing his thing, which was fine last go around but this time I think he needs more watching. I just don't like not being there to make sure everything is taken care of, myself. I trust that things will fall into place soon. If we could get our house sold soon and move into a small house close to the city with a cheap mortgage payment I could take more time with him, heck, I could probably run home on my lunch hour to check on him. Karen Quote Link to comment Share on other sites More sharing options...
Ann Posted March 2, 2005 Share Posted March 2, 2005 Karen...been there done that...so I can relate to this one. The Oxycontin did a number on Dennis, also. He did get his meds very mixed up a couple of times. I was so worried that he would OD on the Oxycontin. Like you, I had to work so it was hard to control this med problem. I finally would only leave one dose of medications with him during the day. The oncologist also gave Dennis a prescription for Hydrocodone as a break through pain med. These weren't as strong and Dennis could take them more often if the Oxycontin wasn't handling the pain. Once, before I realized how out of it the meds were making him, he accidentally had a double dose of Oxycontin. I was really scared and then decided it was time for me to take my leave of absence from work. I'm sure you won't have this problem with so much family help. Hang in there gal!!!! I'm keeping you and Dave in my prayers. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 2, 2005 Share Posted March 2, 2005 Karen, Lucie is on MS Contin, which I guess is a relative. It is time-release morphine. She takes 30mg twice a day, and functions fine. I think when a person first goes on morphine, they react to it with sleep, hallucinations, forgetting, etc. It hopefully will get better. Also, it may be too high a dose for him. One has to experiment with how much to give to really relieve the pain, but not too much more. That has to be determined with each individual. We started with a higher dose and then lessened slowly over days until the pain returned. Then we went back to the last dosage and stuck with that. Good luck. Don Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted March 2, 2005 Author Share Posted March 2, 2005 Again, thanks everyone. HUGS back! Don, thanks for saying it gets better as they adjust to it. I get so scared when Dave isn't "there" you know? In fact, he just called me, and he sounded very lucid. that was comforting. Karen Quote Link to comment Share on other sites More sharing options...
Hebbie Posted March 2, 2005 Share Posted March 2, 2005 Karen, so sorry to hear about this latest development! Oxyconten really did a number on me as well. I took it after my surgery for pain, and boy was it a doozy! Not only was I not all "there" -- it actually made me have dreams about BUGS! (Roaches, mostly...big creepy, crawling roaches. Eeek!) I had to cut down on the prescribed dose too, which was difficult because the pain was pretty intense, and I think after a week or two, I switched to motrin because I just couldn't deal with the fuzzy head and creepy bugs! I hope things get better with him, and pray that Don is right -- his body will adjust and things will improve! You guys are in my thoughts, as always, Heather Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 2, 2005 Share Posted March 2, 2005 Karen, You could ask the Dr. about Fentanyl as an option to oxycontin. I do remember being a little loopy as was adjusting to the meds initially, but that was extremely high dosage. The fentanyl is for opioid resistant pain. Ask. Couldn't hurt. XOXOX Prayers, always, MaryAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 2, 2005 Share Posted March 2, 2005 Jim took oxycontin and it did the job. I can't remember him spacing out on them, maybe. I think that has a lot to do with the dosage vs how much pain you are trying to control. He started on 20mg oxycontin twice a day. As the pain got worse, the dosage went up, sometimes it seemed like weekly. At the end, he was on 60 - 40 - 60 quite a bit, but he needed it and it did work. I used the 4 times per day pill box and I put his oxycontin right in there with his other meds, that way he knew for sure if he took it or he didn't. I made up the pill box myself, to make sure there were no mistakes. I would only make it up 2 or 3 days in advance because the meds change a lot. Keep in touch. I sure do wish I were closer to you so I could come over a couple of days a week to spell you. Margaret Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 3, 2005 Share Posted March 3, 2005 Karen. I can relate to the forgetting if I took them or not part. I couldn't remember what I had taken...if I had taken it or when. Between that and the steroids, something really made me over react in a very desperately bad way. Those are the times when a caregiver would come in very handy. You are doing a great job. You are not alone. Cindi o'h when he unloops a little, couldja send him by to say hi? Quote Link to comment Share on other sites More sharing options...
Justakid Posted March 3, 2005 Share Posted March 3, 2005 I took Percocet and Neurontin together and just OD'ed when I was having all my bone pain and the pain that radiated from my bone marrow to each hair folicle. That was the time that I looked at my kids like they had two heads and my husband and mother watched me for 12 hours straight making me walk and eat and drink and tell them my name. Ended up we could not find a happy medium, either pain or vegetable, I blame the doctor for that one (now we have the good doc!). The notebook is a good idea and the pill cases. I have the dailey pill cases incase I am unable to administer my own meds. Everyone has an updated list of what I am or can take and what it is for. I also provide the doc with an updated list everytime I see him with the current date, just in case! Allergies too and that morphine doesn't work for me. They seem to like that. I noticed that when I am extremely upset and taking the Xanax (as directed) I get confused. What day is it, what am I supposed to do today, what day is it again, etc. Put on the cabinet, today is .......... write down walk the dog 5 times and each time Dave does it he can mark it off. Kinda of like Weight Watchers and drinking 8 glasses of water, color in the circle when you do one. I have also found that this helps when I get a little confused. Also only put out how many pills he can have while you are gone, I would forget if I took one and want to take another (not good). Hang in there guys!!! Quote Link to comment Share on other sites More sharing options...
NellW Posted March 3, 2005 Share Posted March 3, 2005 Karen, I know that with Bob, we ended up using the same 7 day 4 times per day pill box that Margaret mentioned and then set out only what he could take, since we ended up feeling it was too dangerous to let him medicate himself. Like some have said, he would forget what he had taken. I do think too that sometimes it gets better as a person adjusts to the medication. If you got that kind of box and filled it yourself , then his parents could give him whatever he needs while you are gone without much trouble, since it would all be in timed compartments. You could do morning and evening and they would only need to do whatever is needed during the day. I am sure with a few days of trial and error dosage wise and getting used to the drug it will improve. Lots of prayers coming your way. Love Nell Quote Link to comment Share on other sites More sharing options...
Summer Posted March 3, 2005 Share Posted March 3, 2005 Karen, the Duragesic (Fentanyl) patch seems to work well for my partner. It lasts 3 days, makes it easy. For breakthrough pain he uses oxycodone. Constipation has been a problem and he tries to go without whenever possible. I had bought one of those digital pill boxes with 8 compartments so that we could use it for all the supplements and meds - trouble is, the compartments are so small that we can't fit them all, AND.... we had set the reminder alarm and now can't figure out how to shut it off!! For some reason it was going off every hour... we finally took the batteries out and I use it for my vitamins. I'll be heading back to the store for another, bigger, quieter one! Hope you'll find the good balance with the meds. I think Don is right, it's a matter of adjusting the dose until it works. Or, changing the type of med if there's problems. Good luck. Quote Link to comment Share on other sites More sharing options...
Calintay Posted March 3, 2005 Share Posted March 3, 2005 Karen - oxycontin is a heavy narcotic and it will make him loopy. Pain management is hard because the stuff that works is usually the stuff that makes them sleepy and loopy. Don't feel bad that your unable to stay with him he understands. My thoughts and prayers go out to you and Dave. Heidi Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 4, 2005 Share Posted March 4, 2005 Hi Karen, I feel so bad that you have to work and could not be there for him. But at least he has his family there now. One of the reasons they precribe Oxy is that it last longer then other pain medications. So he should be able to sleep longer through the night without having to get up and take another pill. I don't know much about the milligrams, but maybe his dosage has to be adjusted. Sometimes it just takes a body time to adjust to medications, so check it our for a week or so and see if there is any improvement. Poor guy, I feel so bad that he is hurting. My heart goes out to you too as you feel so helpless at times. Just try and make him as comfortable as you can. My prayers go out to you both. Maryanne Quote Link to comment Share on other sites More sharing options...
Fay A. Posted March 4, 2005 Share Posted March 4, 2005 Karen, I play around with the dosage of the pain medications. If I were to take the prescribed dosage I would be unconscious. What I personally want is to be as pain free as possible and still remain lucid. And for me that means I'm left feeling some discomfort. I do not physically divide any medication in pill or capsule form unless my doctor tells me it is okay. Some medications cannot be cut in half like that. Your doctor can usually prescribe a smaller dose pill if it looks like you need less meds to attain the desired effect. I don't play around with dosages of other medications, because the effects could be detrimental if I were to do so (antibiotic resistant bacteria if I were to skip or divide antibiotics, etc.) Between now and the time he becomes adjusted to the effects of the meds I don't blame you one bit for wanting someone with him. Not safe. And you may want to make up a simple daily chart that shows which pills are to be taken, and at what time. Then it can be checked off when David takes the meds. Thinking of you, Dear Ones, and hoping. Quote Link to comment Share on other sites More sharing options...
cathyr Posted March 5, 2005 Share Posted March 5, 2005 Karen, I am on the same oxycondin dose as your husband and use Dialatin for breakthrough pain. It does not make me loopy or sleepy at all. In fact, it just takes the pain away. It is important to take it at the same time every day. I can drive, shop, do anything I want and it has not affected me. I just know that if I am late taking it by over 1 hour then it screws me up and the pain gets worse for awhile. I agree with everyone else that writing down what he takes each day and the time is probably your best bet. Good luck, sweetie! Hugs to you and yours, CathyR Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 6, 2005 Share Posted March 6, 2005 karen, i am so sorry. i just lost my father two days ago. we had had him on darvocet for one day on sunday and it was a nightmare. talk about slipping away! we thought we lost him. you are fortuntae in that your Dave is still able to walk the dog and talk with you. if you feel he is slipping away, please pay attention to your feelings........ i mean, we never really know when someone will leave us. i'm so sorry to say this but having been through it...... it's vital that his pain is minimized for his sake and when you feel he is slipping away try to take comfort in his lack of pain.... and treasure the time that you have with him. before someone passes, there is a gradual process of slipping away which is unfortunately unavoidable..... it's part of the process.. i wasn't aware of it and i missed some important things... so that you know what is happening you are lucky in a way that you are aware and can be more aware of the preciousness of time. I am so sorry for what you are going through and i am there for you, love, lori Quote Link to comment Share on other sites More sharing options...
TAnn Posted March 6, 2005 Share Posted March 6, 2005 Karen, I was prescribed oxycontin and it totally knocked me out. I hated it. Remember that it is a pain med that has to build up in your system. It is time released and sometimes takes 2-3 days to take effect. I didn't like the fact that I HAD to take it twice a day, everyday, even if the pain was better. I chose not to take it and took Advil instead. I still had alot of pain, but was able to mentally function during the day. I prefer a pain med that I can take "as needed". Dave probably has consistant pain and the oxycontin is good for reducing that type of pain. Good luck, and see if he can get a dosage reduction if necessary. He may not need such a strong dosage. Thoughts and Prayers, TAnn Quote Link to comment Share on other sites More sharing options...
Nushka Posted March 6, 2005 Share Posted March 6, 2005 Karen, It must be so hard to know that Dave isn't himself because of the meds. It is a blessing however, that it is relieving his pain. I have been keeping up with all of your problems and know that they are many. You are couragious to make big decisions on your own about the house and moving. If it is any consolation, I think you are doing the right thing. Get plenty of help on the move so that Dave is not overly tired and keep thinking about Faith having that new room. You are in my prayers daily. I hope all of the treatments will work soon and Dave will be out of so much pain and can again be the spouse you can "debate" with. Blessing to all three of you. Nina Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted March 7, 2005 Author Share Posted March 7, 2005 Hey, I posted in General that Dave is out of the hospital, they got his sodium level regulated which has almost gotten rid of the cramping, which is a big cause of his pain, and he's taking oxycontin still because his head still hurts from the radiation damage/tumor/or whatever it is (we will find out more on that next Monday). And you know, he doesn't seem to be slipping away any more. That is much better. I think so much of that was the extreme discomfort, and the oxycontin couldn't really take care of the cramping. The house was sold before we could put a contract on it but another one will come along, and hopefully just when we get a good offer on our house. God Bless! Karen Quote Link to comment Share on other sites More sharing options...
Donna G Posted March 7, 2005 Share Posted March 7, 2005 Glad to hear he is home and you are all together again. Donna G Quote Link to comment Share on other sites More sharing options...
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