Go figure...I am the bad guy

KLScoville

Well this was expected...not wanted but expected. My husband Mark is now mad at me for "telling on him" with the hospice nurses. He is in so much pain and taking the liquid morphine two ml every two hours like clock work. He tells the nurse on the phone that he is doing that because that is what the instructions say (or as need be) well he needs it. Yesterday he complained to me that he was in pain and wanted to take it an hour before it was time. I don't want him overdosing. I told him yesterday that I was going to call the nurse to see if we could find an alternative. The alternatives are a synthetic heroin (a pill that he doesn't want to take cause he has a hard time swallowing) or a pick line/port to administer other pain meds (he doesn't want because it will depress him even more). He agreed that I call the nurse's but now that I have and told them that he was looking for his morphine prior to his two hours being up yesterday and he went through a whole bottle in less than 16 hours. That sad part is that he agreed for me to call the nurse's and now he is mad at me because they are writing up the order for the pill to start tomorrow. He told the nurse on the phone, "well I am taking it like it is perscribed and when my two hours is up I am on the verge of getting the pain back".

He got up at 2:10 am this morning to take morphine...he has never done that. I have been up since then but went back to bed with my husband. He says that he is taking the morphine whether he needs it or not which I think is a lie, especially when he is asking me for some when he just took some an hour ago. Sorry I am rambling and repeating but I am upset that I am trying to help him be pain free (and I told him this) and he would rather be in pain?!? He said he has been stressed out the past couple of days because of this....what???? OMG this was just one day and yesterday.

Well right now I am letting him have his space. Not going to go to him when it is time for his morphine until at least a half an hour to an hour past his time. Unless he gets there first which is likely. As long as he writes it down like we have been. All I want him to be is comfortable (as I told him in a stern voice) and this may be the answer.

Okay now I am at a loss for words...you all wouldn't believe what just happened when I went to turn on the a/c (I am in Florida and it is hot still) and ask him when he would like to take his shower. My husband asked me when was the next time he gets to take morphine????? OMG....This Cancer really SUCKS the big one!!! Oh well guess the "bad guy" is not so bad after all now, could of fooled me an hour ago!

Thanks for letting me vent and listening!
God bless,
~Kelly

Noellesmom

roller coaster
I am so sorry, Kelly.

Please be assured this is a battle the hospice nurses see fought on a regular basis.

This isn't about you being the bad guy at all and I hope you know that.

Take a deep breath and then exhale. Try to find someone to stay with Mark so you can take a walk around the block a couple of times.

Hugs.

KLScoville

Noellesmom said:

roller coaster
I am so sorry, Kelly.

Please be assured this is a battle the hospice nurses see fought on a regular basis.

This isn't about you being the bad guy at all and I hope you know that.

Take a deep breath and then exhale. Try to find someone to stay with Mark so you can take a walk around the block a couple of times.

Hugs.

Thanks
Thanks "mom"

I use to be a home health aid and worked for hospice so I know the routine to a point. I am taking my deep breaths while in another room. Our house isn't too big but just enough to where I can escape when need be. If it wasn't so hot I would take that walk that you suggested but...it's too damn hot already! I am going to the store later because tomorrow is my daughter's birthday and my husband's is on the 30th (oh that is fun every year!-sarcasm) We are going to celebrate them together as we always have. His brother is also coming on Friday on his birthday which will be great.

I know it's not about me being the bad guy. I just felt better when I said that and I know it isn't true and both him and I realize that. We just bumped heads (which we really don't do often but right now it is expected). Like I said, I just give him his space and go on with my routine of cleaning and caring for him.

Thanks for the hugs!!! Means alot to me! Gotta go put my husband back to bed in about 10 minutes after his morphine....I HATE CANCER and what it is doing to my husband!!!

~Kelly

PS...so I asked him (now that he had his morphine) "so your no longer mad at me?" He stated that he didn't appreciate the fact that I was making the decisions. I told him outright that I didn't make any decisions, I only informed the nurses on what was up. They would of questioned me in one more day when I would call for more morphine so I just gave them a heads up now. End of discussion, he doesn't want to stress over this but he did apologize for jumping down my throat about it. Oh this is going to be a "fun" day....NOT!!!!

palmyrafan

KLScoville said:

Thanks
Thanks "mom"

I use to be a home health aid and worked for hospice so I know the routine to a point. I am taking my deep breaths while in another room. Our house isn't too big but just enough to where I can escape when need be. If it wasn't so hot I would take that walk that you suggested but...it's too damn hot already! I am going to the store later because tomorrow is my daughter's birthday and my husband's is on the 30th (oh that is fun every year!-sarcasm) We are going to celebrate them together as we always have. His brother is also coming on Friday on his birthday which will be great.

I know it's not about me being the bad guy. I just felt better when I said that and I know it isn't true and both him and I realize that. We just bumped heads (which we really don't do often but right now it is expected). Like I said, I just give him his space and go on with my routine of cleaning and caring for him.

Thanks for the hugs!!! Means alot to me! Gotta go put my husband back to bed in about 10 minutes after his morphine....I HATE CANCER and what it is doing to my husband!!!

~Kelly

PS...so I asked him (now that he had his morphine) "so your no longer mad at me?" He stated that he didn't appreciate the fact that I was making the decisions. I told him outright that I didn't make any decisions, I only informed the nurses on what was up. They would of questioned me in one more day when I would call for more morphine so I just gave them a heads up now. End of discussion, he doesn't want to stress over this but he did apologize for jumping down my throat about it. Oh this is going to be a "fun" day....NOT!!!!

Control
Your last paragraph hit home with me, especially the statement "he didn't appreciate me making the decisions".

I have brain cancer and my wonderful husband is my caregiver. I can understand from a control standpoint how your husband feels. Our world (and the caregivers as well) has been turned upside down and we feel like we have lost all control. We feel like we control nothing in our lives anymore. We are scheduled for doctors appointments, specialists, tests and exams, medications, etc. You name it, there's a time and a place for it.

You are also right when you say cancer SUCKS. Yes it does!!!! Not just for us, but for the caregivers as well. You have given up so much to fight for the one you love. You have given up your freedom to come and go (unless you have enough $$$ to hire a private nurse), run errands, spend time with family and friends, etc. You never know (and neither do we) from one minute to the next what our moods will be (especially true when fighting brain cancer cause you can't always control what your brain is doing). Something that might seem trivial to the caregiver may be the world to us. What you might deem as successful might not seem that way to the patient at all.

I don't speak for anyone but myself, but I want to thank you for taking the time to be the wonderful caregiver that you are. You may not realize it, but your husband does appreciate every single thing that you do. Whether it is sitting with him, getting him his food and drink, doing his laundry, paying the bills, or getting him his medication. It does not go un-noticed. We just feel guilty that we can't do our share and many times it comes out in ways that are less than tolerable. We want our "normal" back and we have to accept the fact that we have a new "normal" and it doesn't resemble our old selves.

KLScoville

palmyrafan said:

Control
Your last paragraph hit home with me, especially the statement "he didn't appreciate me making the decisions".

I have brain cancer and my wonderful husband is my caregiver. I can understand from a control standpoint how your husband feels. Our world (and the caregivers as well) has been turned upside down and we feel like we have lost all control. We feel like we control nothing in our lives anymore. We are scheduled for doctors appointments, specialists, tests and exams, medications, etc. You name it, there's a time and a place for it.

You are also right when you say cancer SUCKS. Yes it does!!!! Not just for us, but for the caregivers as well. You have given up so much to fight for the one you love. You have given up your freedom to come and go (unless you have enough $$$ to hire a private nurse), run errands, spend time with family and friends, etc. You never know (and neither do we) from one minute to the next what our moods will be (especially true when fighting brain cancer cause you can't always control what your brain is doing). Something that might seem trivial to the caregiver may be the world to us. What you might deem as successful might not seem that way to the patient at all.

I don't speak for anyone but myself, but I want to thank you for taking the time to be the wonderful caregiver that you are. You may not realize it, but your husband does appreciate every single thing that you do. Whether it is sitting with him, getting him his food and drink, doing his laundry, paying the bills, or getting him his medication. It does not go un-noticed. We just feel guilty that we can't do our share and many times it comes out in ways that are less than tolerable. We want our "normal" back and we have to accept the fact that we have a new "normal" and it doesn't resemble our old selves.

completely agree
I completely agree with you. He has lost his control and is not liking it very much. I always have told him that "he" makes the decisions. He is the one who controls everything that involves him until he is no longer able to and until that day it won't be taken away from him.

Actually we have become much more closer than we ever have been during our 6 year marriage. Unfortunately it took this evil thing to make that happen. But it has. I know all my efforts don't go un-noticed in his eyes. I will always be here for him through thick and thin and never hold a grudge against anything that happens or that is said.

I love my husband with all my heart and I want him to be comfortable, that is all I ask from him, to feel comfortable. He understands that, just doesn't like the new "norm" and I don't blame him one bit.

Thanks for your input and listening! God bless you and your husband!
~Kelly

grandmafay

Here
Just here. Glad you have this outlet. Thinking about you. These days are so hard for both of you. Prayers and hugs, Fay

KLScoville

grandmafay said:

Here
Just here. Glad you have this outlet. Thinking about you. These days are so hard for both of you. Prayers and hugs, Fay

Thanks Fay
Thanks Fay and everyone at CSN for letting me vent. My hubby is napping now and maybe this time when he wakes he won't be so argumentative with me. Of course he took his morphine at the 2 hour mark...He wants to be awakened in an hour or so...I will push it more to "or so" cause I have to finish cleaning!

Again thanks for the (((hugs))) and prayers!
~Kelly

ms.sunshine

KLScoville said:

Thanks Fay
Thanks Fay and everyone at CSN for letting me vent. My hubby is napping now and maybe this time when he wakes he won't be so argumentative with me. Of course he took his morphine at the 2 hour mark...He wants to be awakened in an hour or so...I will push it more to "or so" cause I have to finish cleaning!

Again thanks for the (((hugs))) and prayers!
~Kelly

Another point of view
According to your first post, You say you are trying to help him be pain free, and he wants to be in pain.

When I went through cancer treatments I too would tolerate some pain instead of heavy medicating myself. Here's my reason. The meds would stop the pain, but would mess my mind up, it would impair my thinking, and reasoning abilities. When my mind was messed up I felt weak in spirit. I would tolerate as much bodily pain in exchange for a clear mind, and a strong spirit.
Yes when one is weak, and so sick in their body they can feel the spirit within stirring. I can't really explain it, and unless you've been there you can't comprehend. The body is a vessel in which the spirit is housed. The spirit remains strong although the body weakens.

My husband also would get upset with me, but it was something I just had to do. I was to weak to explain it to him at that time. I realized what that Bible scripture meant, "when you are weak then you are strong."

Take care
Jennifer

KLScoville

ms.sunshine said:

Another point of view
According to your first post, You say you are trying to help him be pain free, and he wants to be in pain.

When I went through cancer treatments I too would tolerate some pain instead of heavy medicating myself. Here's my reason. The meds would stop the pain, but would mess my mind up, it would impair my thinking, and reasoning abilities. When my mind was messed up I felt weak in spirit. I would tolerate as much bodily pain in exchange for a clear mind, and a strong spirit.
Yes when one is weak, and so sick in their body they can feel the spirit within stirring. I can't really explain it, and unless you've been there you can't comprehend. The body is a vessel in which the spirit is housed. The spirit remains strong although the body weakens.

My husband also would get upset with me, but it was something I just had to do. I was to weak to explain it to him at that time. I realized what that Bible scripture meant, "when you are weak then you are strong."

Take care
Jennifer

Thanks Jennifer
I completely understand where you are coming from. I also understand why my husband would take pain over being in a "stupor" and I don't blame him one bit. I got the pills tonight along with more morphine that was perscribed. He wants to try the pills. The poor man can't get comfortable one bit.

Also my husband is not really a religious man unlike me being a Christian woman. His phylosopy is: you are born, you live, you die and that's it! I understand the spirit thing but not really with him, it is more of a control thing. Trust me, when he first went to the ER he was in so much pain due to a huge tumor in his abdomen pressing on his spine. He has always had this pain and "sucked it up" but that night/morning it was so intense that he actually cried "wolf" and off we go to the ER.

Thank you for your thoughts though, it did give me an understanding of what he may be thinking even though he does not want any treatments what so ever.

~Kelly

Geri1959

KLScoville said:

Thanks
Thanks "mom"

I use to be a home health aid and worked for hospice so I know the routine to a point. I am taking my deep breaths while in another room. Our house isn't too big but just enough to where I can escape when need be. If it wasn't so hot I would take that walk that you suggested but...it's too damn hot already! I am going to the store later because tomorrow is my daughter's birthday and my husband's is on the 30th (oh that is fun every year!-sarcasm) We are going to celebrate them together as we always have. His brother is also coming on Friday on his birthday which will be great.

I know it's not about me being the bad guy. I just felt better when I said that and I know it isn't true and both him and I realize that. We just bumped heads (which we really don't do often but right now it is expected). Like I said, I just give him his space and go on with my routine of cleaning and caring for him.

Thanks for the hugs!!! Means alot to me! Gotta go put my husband back to bed in about 10 minutes after his morphine....I HATE CANCER and what it is doing to my husband!!!

~Kelly

PS...so I asked him (now that he had his morphine) "so your no longer mad at me?" He stated that he didn't appreciate the fact that I was making the decisions. I told him outright that I didn't make any decisions, I only informed the nurses on what was up. They would of questioned me in one more day when I would call for more morphine so I just gave them a heads up now. End of discussion, he doesn't want to stress over this but he did apologize for jumping down my throat about it. Oh this is going to be a "fun" day....NOT!!!!

morphine...
May I ask, when does morphine...play in on this Journey? that is a powerfull drug... I had heard once you are on that there is no turning back cause it is so additive

KLScoville

Geri1959 said:

morphine...
May I ask, when does morphine...play in on this Journey? that is a powerfull drug... I had heard once you are on that there is no turning back cause it is so additive

morphine
you are right it is addictive only if you are not using it for it's purpose. It is to take away the pain from cancer. It could habor your breathing and you could overdose and die from it if it is not used properly for pain (I know people that had COPD-no pain and died from using morphine). But in my husband's case it is targeting the pain from the tumors he has in his body/all along his aorta/stomach/neck etc. Keeps him comfortable and pain free. It is the only alternative right now for him for his pallative care.

I hope that I answered your question Geri.

~Kelly

ms.sunshine

KLScoville said:

Thanks Jennifer
I completely understand where you are coming from. I also understand why my husband would take pain over being in a "stupor" and I don't blame him one bit. I got the pills tonight along with more morphine that was perscribed. He wants to try the pills. The poor man can't get comfortable one bit.

Also my husband is not really a religious man unlike me being a Christian woman. His phylosopy is: you are born, you live, you die and that's it! I understand the spirit thing but not really with him, it is more of a control thing. Trust me, when he first went to the ER he was in so much pain due to a huge tumor in his abdomen pressing on his spine. He has always had this pain and "sucked it up" but that night/morning it was so intense that he actually cried "wolf" and off we go to the ER.

Thank you for your thoughts though, it did give me an understanding of what he may be thinking even though he does not want any treatments what so ever.

~Kelly

Kelly
I wasn't for sure if my post would offend you, I was hoping it wouldn't. Believe me your husband has thought about God while laying there in all that pain. What he chooses to do with his thoughts is up to him. I so hope he chooses wisely.

NayPaul

patch
Is there a reason he is not on a fetanyl (synthetic morphine) patch? I have ffound it much more effective at moderating the highs and lows of the pain and of the withdrawals.

My wife was on it for a few weeks when she was in pain and since it was not adminitered orally, it did not hurt her stomach. In her case, she did not need it long term. Radiation and chemo helped the pain subside, so I stepped her down and off the patch over about an 8 day period. However for those that continue to need it, it comes in many dose levels and does work.

leprechaun2

KLScoville said:

Thanks Jennifer
I completely understand where you are coming from. I also understand why my husband would take pain over being in a "stupor" and I don't blame him one bit. I got the pills tonight along with more morphine that was perscribed. He wants to try the pills. The poor man can't get comfortable one bit.

Also my husband is not really a religious man unlike me being a Christian woman. His phylosopy is: you are born, you live, you die and that's it! I understand the spirit thing but not really with him, it is more of a control thing. Trust me, when he first went to the ER he was in so much pain due to a huge tumor in his abdomen pressing on his spine. He has always had this pain and "sucked it up" but that night/morning it was so intense that he actually cried "wolf" and off we go to the ER.

Thank you for your thoughts though, it did give me an understanding of what he may be thinking even though he does not want any treatments what so ever.

~Kelly

Hang in there Kelly! And if
Hang in there Kelly! And if you can, be a ittle deaf - sometimes it's the pain/drugs/cancer talking, not him. Sorry you are having such a hard time. We are here for you.

leprechaun2

KLScoville said:

Thanks Jennifer
I completely understand where you are coming from. I also understand why my husband would take pain over being in a "stupor" and I don't blame him one bit. I got the pills tonight along with more morphine that was perscribed. He wants to try the pills. The poor man can't get comfortable one bit.

Also my husband is not really a religious man unlike me being a Christian woman. His phylosopy is: you are born, you live, you die and that's it! I understand the spirit thing but not really with him, it is more of a control thing. Trust me, when he first went to the ER he was in so much pain due to a huge tumor in his abdomen pressing on his spine. He has always had this pain and "sucked it up" but that night/morning it was so intense that he actually cried "wolf" and off we go to the ER.

Thank you for your thoughts though, it did give me an understanding of what he may be thinking even though he does not want any treatments what so ever.

~Kelly

Hang in there Kelly! And if
Hang in there Kelly! And if you can, be a ittle deaf - sometimes it's the pain/drugs/cancer talking, not him. Sorry you are having such a hard time. We are here for you.

KLScoville

ms.sunshine said:

Kelly
I wasn't for sure if my post would offend you, I was hoping it wouldn't. Believe me your husband has thought about God while laying there in all that pain. What he chooses to do with his thoughts is up to him. I so hope he chooses wisely.

completely agree
I hope and pray that he is praying to God during his nap times. I completely agree with you. Thanks

KLScoville

NayPaul said:

patch
Is there a reason he is not on a fetanyl (synthetic morphine) patch? I have ffound it much more effective at moderating the highs and lows of the pain and of the withdrawals.

My wife was on it for a few weeks when she was in pain and since it was not adminitered orally, it did not hurt her stomach. In her case, she did not need it long term. Radiation and chemo helped the pain subside, so I stepped her down and off the patch over about an 8 day period. However for those that continue to need it, it comes in many dose levels and does work.

No patch
I asked for the morphine patch from the hospice nurses but they don't do that. No worries, he is taking his morphine (liquid) 2 ml every two hours and sticking with that. That's it, he wants no more, no less and the decision is all him until he can't decide anymore.

Thanks again for letting me vent!!!
~Kelly