I let him decide what he wants for breakfast and lunch. So today, he had turkey, cottage cheese and peaches. Hardly any carbs at all. The nutritionist had told him yesterday that he needs 45- 60 carbs per meal and that he should make sure he has them on the days that he has cardiac therapy. I asked him if he wanted more carbs, he said, no.
So, at 2 pm, he was low. He ate an apple. No glucose tabs, of course. And he was low at cardiac therapy.
So how stupid is that? He knows absolutely what he is supposed to do. He knows what he is supposed to eat. He just doesn't want to do it. Or is it a control issue? Or does he just want the attention of the therapists? I sat out in the lobby today - I'm just not going to watch him be stupid. Someone needs to slap this guy up the side of the head for sure!!!
On the way home, I couldn't keep my mouth shut. I told him that if he has a death wish, if he wants to die, let me know, I'll help him out. All he has to do is quit taking all of his meds and we will eat out 3 meals a day, 7 days a week. And if he wants to live, then he needs to do this 100%, not just the parts of it he wants to do.
He said, "yes maam". And I told him not to put this on me. I said that I'm not the person with diabetes or a heart problem. That I am only changing my eathing habits to help him, but I sure don't have to do that. I reminded him that he is the person picking what he wants to eat, not me. I ask him every single meal what he wants. So I have nothing to do with it - it's entirely up to him.
So of course, he's mad at me still. But today, I just didn't care. I'm back to my "good place" where I know this is not my problem, not my disease. I have done a really good job of taking care of him for the last 4 weeks and now it's time that he start taking care of himself. I know he doesn't want to. I know he wants to blame me or anyone else for everything that is wrong. But I'm not going to let him blame me.
He's been given a new chance to live with this surgery. He's just pretty stupid to not do what he has to do. And don't tell me it's hard. I'm eating exactly what his doctors and the nutritionist have told him to eat. So I know it can be done.
DW
Friday, April 09, 2010
Thursday, April 08, 2010
A horrible day
Visit to the nutritionist. She said he needs to load up on carbs when he has a low. I said they need to reduce his humulin, he's getting too much. She is sending a note to the endocrinologist to recommend dropping his humulin from 20cc - 18 or even 15 cc. He agreed to drop to 18 tomorrow. He was low again all afternoon.
So why would anyone say to load up on carbs when he has been low almost every afternoon for 2 weeks....I am charting and graphing so much the pattern is quite obvious. The heart surgeon's nurses said when he goes low to give him OJ. That gave him gout. So the endocrinologist said to give him peanut butter, apples, apple juice. Cardiac PT gave him apple juice. I have tried to get him to take glucose tabs for the last 3 years and he has absolutely refused to do so. The nutritionist wants him to take glucose tabs. . He told her today that he would. I wanted to scream my head off.
He came home, had a low, took smarties instead.
She said he should take a glucose tab every 15 minutes til he gets to 70. I asked - all afternoon? I showed her the charts where he has been low for 6 hours at a time....with everything he has been taking. Her answer? Glucose tabs act faster than smarties. Maybe they do. But remember, when he is low, he can't remember anything, can't remember what she said to do, can't remember what's best for him to do and will simply refuse to take what I offer him unless it's something he wants.
Shall I just let him go into a coma???
She made suggestions to increase carbs like putting raisens in his cereal. Of course, she didn't ask if he would do that and I know he hates raisens, so it won't happen. She suggested that rather than eating cockail sauce with the shrimp, that we sautee the shrimp. Probably won't happen either. She never asked him if he was a picky eater. She never asked him if he liked this or that. And it would not have mattered because he would have lied about it.
At one point, she asked him if he would do something and he looked at her, then at me and said, "if she will let me have it". I said, "Don't you dare put this on me!" But what I failed to tell her was that he is has been fixing his own breakfast and lunch the last 3 days - the decision on what to have is 100% up to him. Even when I fix his meals, I ask him what he wants to eat. I have learned over the years if I don't ask, then I'm just working for nothing because if he's not in the mood, he won't eat it. Yet we get into a meeting and he wants to put the blame on me. I just wanted to scream my head off.
We ran out of time. I didn't get to ask her about Mrs. Dash. At the hospital, they told us to not use salt substitutes, but to use all the Mrs. Dash's line. They told us a bout a local store that sold non-salt spices and to go there. Which I did. Yesterday, during the education session on medicines, they told us not to use any Mrs. Dash's products. When I questioned this, they said, "don't use the ones that have potassium in them". OK - but the hospital staff said to use ALL of the Mrs. Dash line.
And maybe that sounds like such a simple tiny problem to many, but this is a huge change in diet for him and he doesn't like herbs and spices - he wants salt.
Then he had the NIVA ultrasound done on his legs and arms. My sister and I picked him up and he wanted to go out for lunch. And I just said, "we better not" and drove home. He has been mad at me the rest of the day. And I mean really really mad! I just don't get it. We go talk to a nutritionist....and he wants to go out to lunch.
I want to give up. I want to quit. I have caregiver burnout so bad. I am sick and tired of doing everthing that I can to help him lose weight, keep his sugar stable, encourage him to exercise.....I have changed everything about how I live....and he gets mad because I tell him I'm not going out to eat.
More proof that he has a death wish?
Then, we were talking about next weeks appointments and I told him that Wednesday will be the worst. He has an education class followed by cardiac therapy and I have a minor outpatient surgery scheduled while he's doing that. He said, "the grandson is going to be delivered that day" and I said that we would be free on Thursday to go see him. Well, he got even madder. Not sure why - I only scheduled my appt to save yet another trip to the clinic. He already had his 2 appointments that day - was he planning on skipping them? He just forgot to mention that to me?
Anyway, it has been a horrible day here. I'm exhausted. Watching chick flicks with my sister and I may just sleep downstairs tonight. I'm just too tired to look at him, see his sullenness, feel how angry he is at me....when all I'm trying to do is help.
Tomorrow is a new day. I'm praying that it will be better.
DW
So why would anyone say to load up on carbs when he has been low almost every afternoon for 2 weeks....I am charting and graphing so much the pattern is quite obvious. The heart surgeon's nurses said when he goes low to give him OJ. That gave him gout. So the endocrinologist said to give him peanut butter, apples, apple juice. Cardiac PT gave him apple juice. I have tried to get him to take glucose tabs for the last 3 years and he has absolutely refused to do so. The nutritionist wants him to take glucose tabs. . He told her today that he would. I wanted to scream my head off.
He came home, had a low, took smarties instead.
She said he should take a glucose tab every 15 minutes til he gets to 70. I asked - all afternoon? I showed her the charts where he has been low for 6 hours at a time....with everything he has been taking. Her answer? Glucose tabs act faster than smarties. Maybe they do. But remember, when he is low, he can't remember anything, can't remember what she said to do, can't remember what's best for him to do and will simply refuse to take what I offer him unless it's something he wants.
Shall I just let him go into a coma???
She made suggestions to increase carbs like putting raisens in his cereal. Of course, she didn't ask if he would do that and I know he hates raisens, so it won't happen. She suggested that rather than eating cockail sauce with the shrimp, that we sautee the shrimp. Probably won't happen either. She never asked him if he was a picky eater. She never asked him if he liked this or that. And it would not have mattered because he would have lied about it.
At one point, she asked him if he would do something and he looked at her, then at me and said, "if she will let me have it". I said, "Don't you dare put this on me!" But what I failed to tell her was that he is has been fixing his own breakfast and lunch the last 3 days - the decision on what to have is 100% up to him. Even when I fix his meals, I ask him what he wants to eat. I have learned over the years if I don't ask, then I'm just working for nothing because if he's not in the mood, he won't eat it. Yet we get into a meeting and he wants to put the blame on me. I just wanted to scream my head off.
We ran out of time. I didn't get to ask her about Mrs. Dash. At the hospital, they told us to not use salt substitutes, but to use all the Mrs. Dash's line. They told us a bout a local store that sold non-salt spices and to go there. Which I did. Yesterday, during the education session on medicines, they told us not to use any Mrs. Dash's products. When I questioned this, they said, "don't use the ones that have potassium in them". OK - but the hospital staff said to use ALL of the Mrs. Dash line.
And maybe that sounds like such a simple tiny problem to many, but this is a huge change in diet for him and he doesn't like herbs and spices - he wants salt.
Then he had the NIVA ultrasound done on his legs and arms. My sister and I picked him up and he wanted to go out for lunch. And I just said, "we better not" and drove home. He has been mad at me the rest of the day. And I mean really really mad! I just don't get it. We go talk to a nutritionist....and he wants to go out to lunch.
I want to give up. I want to quit. I have caregiver burnout so bad. I am sick and tired of doing everthing that I can to help him lose weight, keep his sugar stable, encourage him to exercise.....I have changed everything about how I live....and he gets mad because I tell him I'm not going out to eat.
More proof that he has a death wish?
Then, we were talking about next weeks appointments and I told him that Wednesday will be the worst. He has an education class followed by cardiac therapy and I have a minor outpatient surgery scheduled while he's doing that. He said, "the grandson is going to be delivered that day" and I said that we would be free on Thursday to go see him. Well, he got even madder. Not sure why - I only scheduled my appt to save yet another trip to the clinic. He already had his 2 appointments that day - was he planning on skipping them? He just forgot to mention that to me?
Anyway, it has been a horrible day here. I'm exhausted. Watching chick flicks with my sister and I may just sleep downstairs tonight. I'm just too tired to look at him, see his sullenness, feel how angry he is at me....when all I'm trying to do is help.
Tomorrow is a new day. I'm praying that it will be better.
DW
Wednesday, April 07, 2010
exhaustion
Tonight, I think I have a new definition of the word exhaustion. But I don't know how to describe it. I don't know when I have been this worn out. I'm not sure that I can physically do another set of stairs tonight. But I have to, to get to bed. It's only Wednseday. How do I make it through the rest of the week?
He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.
I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.
I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.
My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.
There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.
DW
He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.
I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.
I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.
My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.
There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.
DW
Tuesday, April 06, 2010
The ups and downs of post surgery
Yesterday morning, he took 22 cc of humulin and he was only supposed to take 20. I was wondering why he got confused...and then remembered that this can happen post surgery. So of course, he had a couple of major lows in the early afternoon. And I don't think he recognized them coming on. So I am ever so grateful that he is now testing on a very regular basis.
He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.
We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.
The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.
My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.
All-in-all it was a good day today. :o)
DW
He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.
We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.
The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.
My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.
All-in-all it was a good day today. :o)
DW
Monday, April 05, 2010
Post-surgery emotions
I had been warned that open heart surgery can completely change a person's emotions. And that for the first 2 years post surgery, there can be lots of emotions, depression, etc. But I just was not prepared for what he did Saturday morning.
I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.
I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.
He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?
He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.
When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.
And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.
I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.
I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.
And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.
So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.
Here's hoping the week improves.
DW
I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.
I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.
He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?
He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.
When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.
And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.
I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.
I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.
And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.
So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.
Here's hoping the week improves.
DW
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