Mark has always been a little stand offish on doing his CF meds. But when we met and got together, he "gave in" and started doing them. Upon my insistence he started going to the CF clinic again for 6 month follow ups, started his pancreatic enzymes again which he hadn't been on for at least 3-4 years and after we'd been together for about 3 years he got put on TOBI for the first time. He was very compliant with those TOBI uses the first few times they were prescribed, which was about 2x a year at the most.
When we moved to San Diego his compliance with going to the dr. faded initially but then we found a military doctor who took him on as his first CF patient. He LOVED this doctor and would see him monthly, not always for a full work up but at least so the doc. could lay eyes on him. Every few months he'd do a PFT and sputum sample, but not every time. The doc instructed him to take TOBI with some of his lung infections. He did the first time just fine, but then the subsequent times he'd do the TOBI for the first few days then slack off. I'd get on his case and he'd start again and it would go on like his all month. Great way to build resistance, I know.....
Then he got the vest about 2 years ago. Initially he loved it and used it everyday as recommended. 20 min in the am, 20 min in the PM. It is set for 2 ten minute intervals so that he can have a break to cough for a few minutes and then finish up the second ten minute stretch. Then same thing later in the day. He only rarely missed a treatment of the vest in those first few months.
After a while though, the novelty of it wore off (I guess????) and he would forget to use it throughout the day. Citing he was too busy with homework and the gym. I got frustrated, and reminded him of how important it was and that I'm not his mother but rather his wife and therefore will not lecture him or treat him like a child, but it's important he do his treatmetns and nobody needs to explain why to him. He's a big boy.
This would produce some coperation for a few weeks, then slacking off again. The same continued with his pulmozyme and TOBI use. It got worse when the doctor told him it was time to start taking TOBI every other month because of the lung infections. He didn't outright refuse to do it, but he would "forget", and therefore it wouldn't get done.
Fast forward to our move to WA in January of this year... his compliance has gone down the toilet really fast. We've even sat down a few times and talked about it. Because this really bothers me. When we got married, I made a committment to work to put him through school so he could focus on his studies and his health, we agreed he would not work for those reasons. And he made a committment to always take care of his CF "stuff" (Dr's appointments, chest PT, medications...). I've held up my end, but he hasn't.
And that's not the only reason why I care (simply because, "we made a deal"). I care because I love him so much and want him to do anything and everything to keep himself healthy. I want him to take care of himself, take his medications so he dosen't need a lung transplant (which by the way he is opposed to so the sooner his lungs dwindle, the sooner he'll be gone from this earth and from my life), and now that he's going to be a parent, I want him to be around for his kids lives as much as possible. Maybe we should have sorted this all out before we got pregnant, but we did talk and I was assured that if I simply reminded him everyday, that he would do it. I thought that was enough.
I love him so much and part of me always takes this personally. Am I not enough of a reason for him to do his meds and stay around for as long as possible? A 40 min committement to the vest everyday and 15-20 minutes to his TOBI isn't that much, especially since we spend 99% of our evening watching sticoms on TV. Do it then for petes sake!!!
So we talk and I explain how important it is to me. His excuse most of the time, "I forget, can you please remind me". So I remind him, and he says, "I'll do it in a bit, I'm busy now". And then he forgets. It goes on like this for a while and I give up. Then I get this newfound desire for him to do it (I never stop caring, but what am I going to do, force him and lecture him? NO) and we talk about it again, I remind him for weeks on end, he forgets or puts it off, and we maybe have one day of vest use and one day of pulmozyme in a 2 week period. Forget the TOBI, I've all but given up on trying to get him to use that because I don't want him to build a resistance from using it for a few days then off, then on for a few days then off....
Then a few weeks ago he leaves his waterbottle in the car for days and days at at time in the record WA heat. I asked him if he could start brining it in the house to put in the fridge, and that I should throw it in the dishwasher. He gets all offensive and asks why. I tell him, "because in this heat you are just harboring bacteria and mold in that waterbottle. I don't have CF and I NEVER leave my waterbottle in the car for days on end just because of the bacteria factor AND I wash my every so often". You know what he says to me??? "you aren't turning into one of those parinoid moms on the CF website are you?" (no offense meant to anyone, It's just that both he and I have seen posts on here from concerned parents an dit seems that they are preventing their kids from being kids because they have CF and we've discussed it.) I was insulted beyond belief. Here I am, trying to help and point out to him that he should bring it inside so I can wash it out for him, and bring it in everday and put it in the fridge so it's not in the heat to grow bacteria. I said nothing to him for the rest of this car ride.... But for some reason he started bringing the waterbottle in and even put it in the dishwasher for a wash. I thanked him for doing that.
Now that August has rolled around, we discussed that he would start his Pulmozyme and vest CONSISTENTLY this month. Well, he did it a few days ago, and he did 1/2 of 1 of his vest treatment today and his pulmozyme. Better than nothing I guess. But you know what I had to resort to? He started to get ready for bed and I said (after reminding him 4 times already earlier this afternoon to put his vest on while watching TV/playing on the internet, and start his Pulmozyme at the same time), "you promised that this month you would do your vest as prescribed AND do your pulmozyme. Neither of us are going to bed until you do it". He looked at the clock and said, "but it's midnight" and I said, "I don't care, you promised so neither of us are going to bed until it's done". I feel like a mother disciplining a bad kid. I'M NOT HIS MOTHER, I'M HIS WIFE AND I'D LIKE TO SIMPLY BE HIS WIFE, NOT THE KEEPER OF HIS RESPONSIBILITIES!!!!!!!!!!!!!!!!!!!!!
So he does 10 minutes of it and I say, "honey, you know.... you are suppose to just take a break and then do another 10 minutes. It's a 20 minute treatment". (not condescenting but rather trying to be informative, remind him since it's been a while since he last used the vest) And he said, "so 40 minutes a day!!!!!" (like it's an outrageous amount of time or something) and I said yes. He told me he'll start tomorrow. I won't hold my breath.
Then tonight he left the nebulizer cup just laying on the couch. I grabbed it and was trying to unhook it (had some other things in my hand) and he looked at me funny. I said to him, "honey, you cant just leave this here like this, "you have to wash it out and clean it after every use so you don't get sick". And you know what he said to me... AGAIN???? "You aren't turning into one of those paranoid mothers from the CF board are you?" Now, I have NEVER raised a had to my husband, nor he to me. But I seriously felt like smackig him right across the face. I didn't, and I would't dare, but HOW DARE HIM. he just pulled this comment a few weeks ago and we rode in silence for the rest of the car ride. Quite a few days later I told him how offensive it had been to me. That I am not his mother but rather his wife, and I am not paranoid. Paranoid would be like telling him he can't go to the gym because there are germs there, and that he can't see his nephews because little kids have germs and get sick....or disinfecting every inch of our house every single day, to me, that would be paranoid. And that I only remind him of these things, or ask him because I truely care about him and his health. He didn't apologize, but seemed to understand that it really hurt my feelings.
So he says it again tonight to me. I told him that he could go to bed all by himself. He asked why and I told him we better not talk right now because I might say something I don't mean or haven't though on.... He's upstairs and I"m here, typing this to all of you.
It's much longer than I anticipated it would be. But I need some advice. What do I do? I care about him, I want him to do his treatments and YES, I do take it personally that he doesn't do them/take them seriously. I don't dare discuss this with his family because they'll just nag him and that will make him NOT do it at all (for all of you who think I'm opinionated and strong willed LOL...Mark is a sweet mild tempered easy to get along with guy, but push one of his very few buttons- and this is one of them, and it's like night and day).
How do I get him to do his treatmetns without nagging him. I know he KNOWS the importance of doing these things, but how do I reinterate it to him without lecturing him or boring him or sounding like his mother. What if he never does regularly do his treatments like he's suppose to? Is that fair to me? (I personally don't think so but I'm also very emotional right now period, and now very upset about this situaiton). I married a man with CF yes, and I don't dwell on that whatsoever. But he made a promise to me that he would take care of himself and do his meds and treatmetns, and he's NOT. What do I do?????
When we moved to San Diego his compliance with going to the dr. faded initially but then we found a military doctor who took him on as his first CF patient. He LOVED this doctor and would see him monthly, not always for a full work up but at least so the doc. could lay eyes on him. Every few months he'd do a PFT and sputum sample, but not every time. The doc instructed him to take TOBI with some of his lung infections. He did the first time just fine, but then the subsequent times he'd do the TOBI for the first few days then slack off. I'd get on his case and he'd start again and it would go on like his all month. Great way to build resistance, I know.....
Then he got the vest about 2 years ago. Initially he loved it and used it everyday as recommended. 20 min in the am, 20 min in the PM. It is set for 2 ten minute intervals so that he can have a break to cough for a few minutes and then finish up the second ten minute stretch. Then same thing later in the day. He only rarely missed a treatment of the vest in those first few months.
After a while though, the novelty of it wore off (I guess????) and he would forget to use it throughout the day. Citing he was too busy with homework and the gym. I got frustrated, and reminded him of how important it was and that I'm not his mother but rather his wife and therefore will not lecture him or treat him like a child, but it's important he do his treatmetns and nobody needs to explain why to him. He's a big boy.
This would produce some coperation for a few weeks, then slacking off again. The same continued with his pulmozyme and TOBI use. It got worse when the doctor told him it was time to start taking TOBI every other month because of the lung infections. He didn't outright refuse to do it, but he would "forget", and therefore it wouldn't get done.
Fast forward to our move to WA in January of this year... his compliance has gone down the toilet really fast. We've even sat down a few times and talked about it. Because this really bothers me. When we got married, I made a committment to work to put him through school so he could focus on his studies and his health, we agreed he would not work for those reasons. And he made a committment to always take care of his CF "stuff" (Dr's appointments, chest PT, medications...). I've held up my end, but he hasn't.
And that's not the only reason why I care (simply because, "we made a deal"). I care because I love him so much and want him to do anything and everything to keep himself healthy. I want him to take care of himself, take his medications so he dosen't need a lung transplant (which by the way he is opposed to so the sooner his lungs dwindle, the sooner he'll be gone from this earth and from my life), and now that he's going to be a parent, I want him to be around for his kids lives as much as possible. Maybe we should have sorted this all out before we got pregnant, but we did talk and I was assured that if I simply reminded him everyday, that he would do it. I thought that was enough.
I love him so much and part of me always takes this personally. Am I not enough of a reason for him to do his meds and stay around for as long as possible? A 40 min committement to the vest everyday and 15-20 minutes to his TOBI isn't that much, especially since we spend 99% of our evening watching sticoms on TV. Do it then for petes sake!!!
So we talk and I explain how important it is to me. His excuse most of the time, "I forget, can you please remind me". So I remind him, and he says, "I'll do it in a bit, I'm busy now". And then he forgets. It goes on like this for a while and I give up. Then I get this newfound desire for him to do it (I never stop caring, but what am I going to do, force him and lecture him? NO) and we talk about it again, I remind him for weeks on end, he forgets or puts it off, and we maybe have one day of vest use and one day of pulmozyme in a 2 week period. Forget the TOBI, I've all but given up on trying to get him to use that because I don't want him to build a resistance from using it for a few days then off, then on for a few days then off....
Then a few weeks ago he leaves his waterbottle in the car for days and days at at time in the record WA heat. I asked him if he could start brining it in the house to put in the fridge, and that I should throw it in the dishwasher. He gets all offensive and asks why. I tell him, "because in this heat you are just harboring bacteria and mold in that waterbottle. I don't have CF and I NEVER leave my waterbottle in the car for days on end just because of the bacteria factor AND I wash my every so often". You know what he says to me??? "you aren't turning into one of those parinoid moms on the CF website are you?" (no offense meant to anyone, It's just that both he and I have seen posts on here from concerned parents an dit seems that they are preventing their kids from being kids because they have CF and we've discussed it.) I was insulted beyond belief. Here I am, trying to help and point out to him that he should bring it inside so I can wash it out for him, and bring it in everday and put it in the fridge so it's not in the heat to grow bacteria. I said nothing to him for the rest of this car ride.... But for some reason he started bringing the waterbottle in and even put it in the dishwasher for a wash. I thanked him for doing that.
Now that August has rolled around, we discussed that he would start his Pulmozyme and vest CONSISTENTLY this month. Well, he did it a few days ago, and he did 1/2 of 1 of his vest treatment today and his pulmozyme. Better than nothing I guess. But you know what I had to resort to? He started to get ready for bed and I said (after reminding him 4 times already earlier this afternoon to put his vest on while watching TV/playing on the internet, and start his Pulmozyme at the same time), "you promised that this month you would do your vest as prescribed AND do your pulmozyme. Neither of us are going to bed until you do it". He looked at the clock and said, "but it's midnight" and I said, "I don't care, you promised so neither of us are going to bed until it's done". I feel like a mother disciplining a bad kid. I'M NOT HIS MOTHER, I'M HIS WIFE AND I'D LIKE TO SIMPLY BE HIS WIFE, NOT THE KEEPER OF HIS RESPONSIBILITIES!!!!!!!!!!!!!!!!!!!!!
So he does 10 minutes of it and I say, "honey, you know.... you are suppose to just take a break and then do another 10 minutes. It's a 20 minute treatment". (not condescenting but rather trying to be informative, remind him since it's been a while since he last used the vest) And he said, "so 40 minutes a day!!!!!" (like it's an outrageous amount of time or something) and I said yes. He told me he'll start tomorrow. I won't hold my breath.
Then tonight he left the nebulizer cup just laying on the couch. I grabbed it and was trying to unhook it (had some other things in my hand) and he looked at me funny. I said to him, "honey, you cant just leave this here like this, "you have to wash it out and clean it after every use so you don't get sick". And you know what he said to me... AGAIN???? "You aren't turning into one of those paranoid mothers from the CF board are you?" Now, I have NEVER raised a had to my husband, nor he to me. But I seriously felt like smackig him right across the face. I didn't, and I would't dare, but HOW DARE HIM. he just pulled this comment a few weeks ago and we rode in silence for the rest of the car ride. Quite a few days later I told him how offensive it had been to me. That I am not his mother but rather his wife, and I am not paranoid. Paranoid would be like telling him he can't go to the gym because there are germs there, and that he can't see his nephews because little kids have germs and get sick....or disinfecting every inch of our house every single day, to me, that would be paranoid. And that I only remind him of these things, or ask him because I truely care about him and his health. He didn't apologize, but seemed to understand that it really hurt my feelings.
So he says it again tonight to me. I told him that he could go to bed all by himself. He asked why and I told him we better not talk right now because I might say something I don't mean or haven't though on.... He's upstairs and I"m here, typing this to all of you.
It's much longer than I anticipated it would be. But I need some advice. What do I do? I care about him, I want him to do his treatments and YES, I do take it personally that he doesn't do them/take them seriously. I don't dare discuss this with his family because they'll just nag him and that will make him NOT do it at all (for all of you who think I'm opinionated and strong willed LOL...Mark is a sweet mild tempered easy to get along with guy, but push one of his very few buttons- and this is one of them, and it's like night and day).
How do I get him to do his treatmetns without nagging him. I know he KNOWS the importance of doing these things, but how do I reinterate it to him without lecturing him or boring him or sounding like his mother. What if he never does regularly do his treatments like he's suppose to? Is that fair to me? (I personally don't think so but I'm also very emotional right now period, and now very upset about this situaiton). I married a man with CF yes, and I don't dwell on that whatsoever. But he made a promise to me that he would take care of himself and do his meds and treatmetns, and he's NOT. What do I do?????