He truly did watch what he ate today. His mood seemed a bit better. I decided to give Atkins a try for me. I know he won't do any diet, so I picked one I can do for a short time. I decided to quit soda and sugar again and asked him if he would quit sugar to help me out. He said he would, so only time will tell.
Maybe he just senses that I'm at the end of my rope. Whatever it is, it's been a pleasant day around here. Part of the never ending roller coaster ride.
Monday, March 31, 2008
Sunday, March 30, 2008
So now he's mad at me
because I asked him if he could please put the depends in the trash and not leave them laying on the floor. He said he forgot. I quietly said he did not forget because he put it on the puppy's potty pad yesterday and didn't pick that up either. He then said that I put it in the trash while he was in the shower and I didn't give him time to do it. I reminded him that no, he had already had his shower, went downstairs, had left the door wide open, the bed unmaid, and we had 12 guests here all day long.
He certainly does not do well with me reminding him of things like this. But on the other hand I am not going to let him blame it all on me. It's his problem, his trash, and I am NOT going to be his nurse maid.
I swear, if I had a job, I would leave him right now. So, next mission, get a job. And at my age, I really even hate to think about trying. But tonight...it's my survival mode talking. I just need to get out of this situation.
DW
He certainly does not do well with me reminding him of things like this. But on the other hand I am not going to let him blame it all on me. It's his problem, his trash, and I am NOT going to be his nurse maid.
I swear, if I had a job, I would leave him right now. So, next mission, get a job. And at my age, I really even hate to think about trying. But tonight...it's my survival mode talking. I just need to get out of this situation.
DW
Suddenly....I'm just depressed.
My sister was here this weekend. And this morning, she wanted to take me out to breakfast. So we went. She really laid into me and I think I needed it.....but she's gone home now and I just feel so alone. So I need to write to get this out of my system.
She said that she was concerned about the amount of weight my husband has put on so far this year. I said, "I know." She said, "no, you live with him every day and you don't notice the change like we do when we only see him once every couple of months."
Which is true, I know.
She said that his upper arms are so big he can barely drive. Ok. I had not noticed that at all. I do know that his jean size have gone from a 36 waist to a 45 waist. Only because he asked me to go buy him new jeans. I also know that there is nothing in his closet that he can fit into.
I remember hearing about a diabetic when we were kids growing up. His religion prevented him from getting medical treatment. And I remember at church, they said he "blew up". I later asked mom what that meant and she said he just swelled up so much that the circulation shut off and he died.
Is my husband "blowing up"??
And then my sis said that she didn't want me to get in a fight with my hubby, but she thought that I needed to know that she saw him take a bag of candy and throw it on the very top shelf in the kitchen cabinet (where I would never look because it's too tall for me to get into.)
So, is he trying to die? Is he stuffing himself with sugar, eating it behind my back, hiding it in the house.....because he wants to die?
And that's what has thrown me into a blue funk this afternoon. Half of me says....just feed him all the sugar he wants. The other half of me says that I should go find the bag of candy, put it in the trash, and take the trash to the dump! And then there's that part of me that's the nurturing, mothering caregiver that wants to do whatever I can to help him through this. And the other part of me that says, NOT MY DISEASE....and just take a nap!
Somewhere in the middle of all these emotions...there has to be some balance. But I sure haven't found it yet.
I just want to smack every single person who has diabetes that does not take care of themselves and shake them by their ears and scream into their faces...."IT IS TOO MY DISEASE.....YOU LIVE IN MY HOUSE!"
OK. I will get past this. One step at a time. But right now....I'm pretty pissed off that he's hiding candy.
I also need to note that he went to the bathroom last night and did not flush the toilet. His urine is near blood red.
And he took off his depends and tossed them onto the puppy's potty pad and just left them there in the corner of the bedroom. OK....yeah, just a little rage over that one. I am NOT his maid and I am NOT going to go around and pick up his depends after him. And I cannot believe he has gotten to this point....too lazy to throw away his own depends?
I am about 2 shakes away from walking out on him today and never looking back. But I'm so completely exhusted and drained that it's not going to be today. All I can do is say a prayer that the good Lord will see me through this round of emotions.
My sister also said that she has noticed a huge change in his personality. He does not care about anything. She says it's like he is in a drug induced fog. I told her that I've noticed he does not answer me when I say something more often than not. And it's true....it's like he is in a fog. He doesn't seem to be interested in anything much anymore. Except watching movies on TV.
It's good to have sisters who come visit on ocassion and can tell you thinks that you miss when you live with this on a day to day basis. Right now, I'm just very tired, and very depressed.
DW
DW
She said that she was concerned about the amount of weight my husband has put on so far this year. I said, "I know." She said, "no, you live with him every day and you don't notice the change like we do when we only see him once every couple of months."
Which is true, I know.
She said that his upper arms are so big he can barely drive. Ok. I had not noticed that at all. I do know that his jean size have gone from a 36 waist to a 45 waist. Only because he asked me to go buy him new jeans. I also know that there is nothing in his closet that he can fit into.
I remember hearing about a diabetic when we were kids growing up. His religion prevented him from getting medical treatment. And I remember at church, they said he "blew up". I later asked mom what that meant and she said he just swelled up so much that the circulation shut off and he died.
Is my husband "blowing up"??
And then my sis said that she didn't want me to get in a fight with my hubby, but she thought that I needed to know that she saw him take a bag of candy and throw it on the very top shelf in the kitchen cabinet (where I would never look because it's too tall for me to get into.)
So, is he trying to die? Is he stuffing himself with sugar, eating it behind my back, hiding it in the house.....because he wants to die?
And that's what has thrown me into a blue funk this afternoon. Half of me says....just feed him all the sugar he wants. The other half of me says that I should go find the bag of candy, put it in the trash, and take the trash to the dump! And then there's that part of me that's the nurturing, mothering caregiver that wants to do whatever I can to help him through this. And the other part of me that says, NOT MY DISEASE....and just take a nap!
Somewhere in the middle of all these emotions...there has to be some balance. But I sure haven't found it yet.
I just want to smack every single person who has diabetes that does not take care of themselves and shake them by their ears and scream into their faces...."IT IS TOO MY DISEASE.....YOU LIVE IN MY HOUSE!"
OK. I will get past this. One step at a time. But right now....I'm pretty pissed off that he's hiding candy.
I also need to note that he went to the bathroom last night and did not flush the toilet. His urine is near blood red.
And he took off his depends and tossed them onto the puppy's potty pad and just left them there in the corner of the bedroom. OK....yeah, just a little rage over that one. I am NOT his maid and I am NOT going to go around and pick up his depends after him. And I cannot believe he has gotten to this point....too lazy to throw away his own depends?
I am about 2 shakes away from walking out on him today and never looking back. But I'm so completely exhusted and drained that it's not going to be today. All I can do is say a prayer that the good Lord will see me through this round of emotions.
My sister also said that she has noticed a huge change in his personality. He does not care about anything. She says it's like he is in a drug induced fog. I told her that I've noticed he does not answer me when I say something more often than not. And it's true....it's like he is in a fog. He doesn't seem to be interested in anything much anymore. Except watching movies on TV.
It's good to have sisters who come visit on ocassion and can tell you thinks that you miss when you live with this on a day to day basis. Right now, I'm just very tired, and very depressed.
DW
DW
Saturday, March 29, 2008
A good break
I'm having an amazing weekend. My sis came over to visit and I have just hosted a charity event in my studio. So many female friends....so much understanding....so much fun.
I didn't realize how much I needed to do something like this....reach out and help someone else who is disabled in a completely different manner than diabetes.
And hubby has tolerated our 5 house guests quite well.
But I wonder if we are getting close to daytime depends. He was doing something a couple of times this weekend where he had to run to the bathroom and the sounds I heard, I knew it was diahrrea. And if I can hear it...then all my houseguests can hear it as well. I wasn't embarrased at all, but a couple of them were. I guess when you live with it, you get used to it and then you forget what someone else might think when they hear it.
So do I quit having friends over? Do I explain to them how seriously ill he is? Do I just ignore it and act like no one else can hear it? Do I turn the stereo on so loud no one will hear it?
Is it just another step in the process? I think I finally realized the truth about why we no longer go to movies. He can't sit through one. Will we stop going out at all because he needs to get to a restroom in a hurry? Or will he wear depends in the day? And my next question...if you have diahrrea that bad....you still need to be near a bathroom...even with depends on. How does one handle that?
I think perhaps my greatest fear is that he will be housebound. Oh what am I thinking? If he goes on dialysis...we won't be traveling anywhere.
More loss. More steps to grieve. More changes.
More reasons to enjoy weekends like this!
I didn't realize how much I needed to do something like this....reach out and help someone else who is disabled in a completely different manner than diabetes.
And hubby has tolerated our 5 house guests quite well.
But I wonder if we are getting close to daytime depends. He was doing something a couple of times this weekend where he had to run to the bathroom and the sounds I heard, I knew it was diahrrea. And if I can hear it...then all my houseguests can hear it as well. I wasn't embarrased at all, but a couple of them were. I guess when you live with it, you get used to it and then you forget what someone else might think when they hear it.
So do I quit having friends over? Do I explain to them how seriously ill he is? Do I just ignore it and act like no one else can hear it? Do I turn the stereo on so loud no one will hear it?
Is it just another step in the process? I think I finally realized the truth about why we no longer go to movies. He can't sit through one. Will we stop going out at all because he needs to get to a restroom in a hurry? Or will he wear depends in the day? And my next question...if you have diahrrea that bad....you still need to be near a bathroom...even with depends on. How does one handle that?
I think perhaps my greatest fear is that he will be housebound. Oh what am I thinking? If he goes on dialysis...we won't be traveling anywhere.
More loss. More steps to grieve. More changes.
More reasons to enjoy weekends like this!
Wednesday, March 26, 2008
Current kidney function
He had it tested this week and it has not decreased any more. That is wonderful news!
So they are going to increase the allopurino. In an attempt to save his feet from being amputated.
I like wikipedia. I know there are better references...but it is usually pretty straight forward. Allopurino.
It says:
"In addition to its use in gout, allopurinol is also commonly used as prophylaxis with chemotherapeutic treatments, which can rapidly result in very high uric acid concentrations due to widespread cell death (tumour lysis syndrome)."
So, the diabetes is killing off the body's cells, the kidneys are failing to process the waste. But a second reason for build up of uric acid is the death of the cells. So he is getting hit with this as a double whammy in my mind. Once from the kidney function and secondly from the dead cells.
The side effect of this drug is worsening renal function, thus the monthly kidney tests at this point.
At this point, I'm seriously thinking I should go back to school and become an endocrinoligist! NOT! But there are moments when I think you can learn more on the internet than any doctor/specialist can tell you. :o)
DW
So they are going to increase the allopurino. In an attempt to save his feet from being amputated.
I like wikipedia. I know there are better references...but it is usually pretty straight forward. Allopurino.
It says:
"In addition to its use in gout, allopurinol is also commonly used as prophylaxis with chemotherapeutic treatments, which can rapidly result in very high uric acid concentrations due to widespread cell death (tumour lysis syndrome)."
So, the diabetes is killing off the body's cells, the kidneys are failing to process the waste. But a second reason for build up of uric acid is the death of the cells. So he is getting hit with this as a double whammy in my mind. Once from the kidney function and secondly from the dead cells.
The side effect of this drug is worsening renal function, thus the monthly kidney tests at this point.
At this point, I'm seriously thinking I should go back to school and become an endocrinoligist! NOT! But there are moments when I think you can learn more on the internet than any doctor/specialist can tell you. :o)
DW
Tuesday, March 25, 2008
from my heart
I went upstairs tonight to go to bed, and he had on a pair of depends. I wish I could write what is in my heart...but I'm not sure I can find the words to express myself. At first I thought it was due to bladder incontinence. But then I realized...it's bowel incontinence.
I've done quite a bit of research on this, trying to prepare myself mentally. One of the websites that has more information than most is the Joslin Diabetes Center
And his neuropathy is getting worse. So it does not surprise me. Yet it does. I guess I just wasn't ready to see my husband in depends at this point of our lives.
I can see the outward signs of this disease in his charcot's food, his gout, and his impaired vision. So I don't know why I continue to deny that the same types of things have to be going on inside his body.
Of the types of neuropathy listed on the website above, he has been diagnosed so far with:
sensory neuropathy
distal neuropathy
bladder neuropathy
postural hypotension
charcot joint
impotence
The nerve endings are dying. "It can take up to two years for the pain of neuropathy - which is caused by ongoing damage to the nerve - to be replaced by the numbness that occurs when the nerve cells are more severely damaged. " He has already lost feeling and sensation in most of his fingers and in his feet.
So as I look at him tonight, I do understand (yet fear) that the nerve endings inside of his body are dying. And perhaps that explains why he is in so much pain all of the time.
But what happens as more and more of his nerve endings die off? How long before dialysis. And what "real" value would a kidney transplant be? Just prolong his agony? A kidney will only process the waste in his system. It won't alter the fact that his pancreas no longer produces insulin. It could not reverse the loss that he has already suffered.
I know this sounds horribly selfish, but tonight, I am having a difficult time comprehending that he is now in depends. But at the same time, I am so grateful that he took the initiative to wear them on his own.
I just have to wonder, what next?
DW
Note: He changed his mind on eating healthy. 5 days ago I posted that he had agreed to diet (translate - eat healthier) and then the next day he changed his mind. He probably had a pound of chocolate yesterday, Easter Sunday. And no, I did not buy any of it.
I've done quite a bit of research on this, trying to prepare myself mentally. One of the websites that has more information than most is the Joslin Diabetes Center
And his neuropathy is getting worse. So it does not surprise me. Yet it does. I guess I just wasn't ready to see my husband in depends at this point of our lives.
I can see the outward signs of this disease in his charcot's food, his gout, and his impaired vision. So I don't know why I continue to deny that the same types of things have to be going on inside his body.
Of the types of neuropathy listed on the website above, he has been diagnosed so far with:
sensory neuropathy
distal neuropathy
bladder neuropathy
postural hypotension
charcot joint
impotence
The nerve endings are dying. "It can take up to two years for the pain of neuropathy - which is caused by ongoing damage to the nerve - to be replaced by the numbness that occurs when the nerve cells are more severely damaged. " He has already lost feeling and sensation in most of his fingers and in his feet.
So as I look at him tonight, I do understand (yet fear) that the nerve endings inside of his body are dying. And perhaps that explains why he is in so much pain all of the time.
But what happens as more and more of his nerve endings die off? How long before dialysis. And what "real" value would a kidney transplant be? Just prolong his agony? A kidney will only process the waste in his system. It won't alter the fact that his pancreas no longer produces insulin. It could not reverse the loss that he has already suffered.
I know this sounds horribly selfish, but tonight, I am having a difficult time comprehending that he is now in depends. But at the same time, I am so grateful that he took the initiative to wear them on his own.
I just have to wonder, what next?
DW
Note: He changed his mind on eating healthy. 5 days ago I posted that he had agreed to diet (translate - eat healthier) and then the next day he changed his mind. He probably had a pound of chocolate yesterday, Easter Sunday. And no, I did not buy any of it.
Thursday, March 20, 2008
Dieting
He is now up to 250 pounds. He was around 205. And he admitted tonight that he needs to lose weight. So, tomorrow morning...we are just going to eat healthy. I decided against Nutri Systems as I do not think he would like the food and thus he would not stick with it.
I like Adkins...but I don't think it's so good for him....even if he added in some carbs.
I do quite well on Weight Watchers....but he is not about to count points, measure food, etc. And I am planning a trip and will be gone 3 weeks next month and then he is traveling most of May.
So tonight, we agreed on a "plan". Who knows if it will work...but at least I plan to try to help him with it. It's been 5 years since we did a diet together. I know, women should never diet with men. But we seem to do this quite well together. We are simply going to eat a lot of salads and fresh fruit and veggies. If we eat out, we will eat salad. No sugar. Lots of water. Very little white flour, if any. Low carb whole wheat bagels and pita bread. Low fat everthing and we are going to watch cholesterol in food.
He agreed to start walking on the treadmill tomorrow.
At least he is willing to try.
:o)
DW
I like Adkins...but I don't think it's so good for him....even if he added in some carbs.
I do quite well on Weight Watchers....but he is not about to count points, measure food, etc. And I am planning a trip and will be gone 3 weeks next month and then he is traveling most of May.
So tonight, we agreed on a "plan". Who knows if it will work...but at least I plan to try to help him with it. It's been 5 years since we did a diet together. I know, women should never diet with men. But we seem to do this quite well together. We are simply going to eat a lot of salads and fresh fruit and veggies. If we eat out, we will eat salad. No sugar. Lots of water. Very little white flour, if any. Low carb whole wheat bagels and pita bread. Low fat everthing and we are going to watch cholesterol in food.
He agreed to start walking on the treadmill tomorrow.
At least he is willing to try.
:o)
DW
Tuesday, March 18, 2008
Obsessive/Compulsive
I had to laugh at the suggestion hubby use "portion control" in his diet. He really is an obsessive/compulisive type of guy. He will sit and eat an entire bag of potato chips. Or a whole bag of cookies. He buys a new train bed, all the buildings, the grass and trees, and new trains and it all still sits in the original box. He will have 5 new suits tailor made and not wear a one of them. He will go out on the ATV for 5 days in a row and then not go again for a year.
It's an interesting thing to watch and I do know it must have an impact on his diabetes. He goest through phases where he will be 100% religious about meds/shots/exercise/diet.....and then not even take his shots per schedule for days on end.
Portion control is just not going to work with this guy.
We are back home and we will do more research on nutri systems today. He did diet and exercise 5 years ago and I've been trying to convince him that it's as good as time as any to do it all again. We will see what today brings. He did confess last night that he needs to lose 50 pounds. Hmmm....probably closer to 100, but we can start with 50!
DW
It's an interesting thing to watch and I do know it must have an impact on his diabetes. He goest through phases where he will be 100% religious about meds/shots/exercise/diet.....and then not even take his shots per schedule for days on end.
Portion control is just not going to work with this guy.
We are back home and we will do more research on nutri systems today. He did diet and exercise 5 years ago and I've been trying to convince him that it's as good as time as any to do it all again. We will see what today brings. He did confess last night that he needs to lose 50 pounds. Hmmm....probably closer to 100, but we can start with 50!
DW
Saturday, March 15, 2008
Survival
Life can be such a zoo. We are at my in-laws. Hubby's dad is diabetic, type 2, as well. His mom has these "attacks" and "spells" which I do believe are her way of getting my father-in-law to pump up in order to prevent a crash. It's so sad to watch. He starts to go into a sugar low, she has an "attack", he needs to "rescue" her which pumps him up and his sugar goes back to a normal. It's a near constant cycle here.
Plus, this time, they have the thermostat set at 85 degrees. We keep ours between 68 and 72. I am just roasting. Even hubby is sweating!
I'm very grateful to have an art buddy here, so for the past 3 days, we have been off shopping, desigining, creating and exploring some places about 2 hours from here that I've never been to before...little tourist trap communities. It's been quite fun, gets me out of this situation during the day and has truly inspired the creative side of me.
So now, after 3 days, hubby is whining and complaining that I "don't love him, don't want to be around him, would rather be with anyone else than him".....so tomorrow, I will give him the entire day. Wanna bet he sleeps the whole day? LOLOL!!!
Hubby has actually been doing pretty well here. I almost think he has to be the "strong" one for his parents.
We are talking about joining Nutri System when we get back home. Anyone have thoughts on their diabetic diet? Hubby has gained at least 40 - 50 pounds this past year and he needs to do something. And he can't do it on his own.
Plus, this time, they have the thermostat set at 85 degrees. We keep ours between 68 and 72. I am just roasting. Even hubby is sweating!
I'm very grateful to have an art buddy here, so for the past 3 days, we have been off shopping, desigining, creating and exploring some places about 2 hours from here that I've never been to before...little tourist trap communities. It's been quite fun, gets me out of this situation during the day and has truly inspired the creative side of me.
So now, after 3 days, hubby is whining and complaining that I "don't love him, don't want to be around him, would rather be with anyone else than him".....so tomorrow, I will give him the entire day. Wanna bet he sleeps the whole day? LOLOL!!!
Hubby has actually been doing pretty well here. I almost think he has to be the "strong" one for his parents.
We are talking about joining Nutri System when we get back home. Anyone have thoughts on their diabetic diet? Hubby has gained at least 40 - 50 pounds this past year and he needs to do something. And he can't do it on his own.
Faith, spouse of non-compliant diabetic
Your blog has been removed and I have not seen you post here since February 8th.
All I can do is say a prayer and hope that all is well.
DW
All I can do is say a prayer and hope that all is well.
DW
Wednesday, March 12, 2008
Never say never!
And will I ever really learn that? We've spent the last 2 days driving 15 hours to his parent's house. And I said I wouldn't make that drive again. However, I do think I convinced him this time that we need to just fly from now on. I was able to rig up a heating pad to an outlet and that helped. He did not have problems with incontenince and the weather was good the whole day. We spent last night in a hotel which gave us some rest.
We used to arrive here and just collaspe in bed for the rest of the day, but we seem to be doing ok so far this afternoon.
He has started his new meds so hopefully that has helped with the incontenence.
Oh, why are we here? He called his mom last Saturday. It was her birthday. She started crying (as usual) and made him feel so bad he told her we would come see her.
He told me she said she wanted to see me, too.
Now, I do know that is a blatant lie..it was just his way of getting me to make the drive with him. I actually thought it was kind of cute. Not that I appreciate the lie....but that he wanted me to come with him. So, here I am. Thinking I will never make that drive again....15 hours in the cab of a pickup truck.....I'm way too old!
I'm sure I will be blogging daily from here to help me get through the stress of the visit. It's just what I do when I'm here.
And how is he? Well, his feet look worse to me. His stomach is totally bruised from the needles. And I've been researching hepatitis C which he has had since high school....and find that he is probably suffering some of the consequences of that as well (liver related problems). His attitude has been pretty calm for the past couple of weeks. I'm going to guess his blood levels are pretty normal. But then, how would we know since he never tests it? Sigh.
Other than that, life is good.
We used to arrive here and just collaspe in bed for the rest of the day, but we seem to be doing ok so far this afternoon.
He has started his new meds so hopefully that has helped with the incontenence.
Oh, why are we here? He called his mom last Saturday. It was her birthday. She started crying (as usual) and made him feel so bad he told her we would come see her.
He told me she said she wanted to see me, too.
Now, I do know that is a blatant lie..it was just his way of getting me to make the drive with him. I actually thought it was kind of cute. Not that I appreciate the lie....but that he wanted me to come with him. So, here I am. Thinking I will never make that drive again....15 hours in the cab of a pickup truck.....I'm way too old!
I'm sure I will be blogging daily from here to help me get through the stress of the visit. It's just what I do when I'm here.
And how is he? Well, his feet look worse to me. His stomach is totally bruised from the needles. And I've been researching hepatitis C which he has had since high school....and find that he is probably suffering some of the consequences of that as well (liver related problems). His attitude has been pretty calm for the past couple of weeks. I'm going to guess his blood levels are pretty normal. But then, how would we know since he never tests it? Sigh.
Other than that, life is good.
Monday, March 03, 2008
Escape
Yes, I'm escaping! Going to visit my mom this week. I should get some really great rest! And come home ready to face whatever.
Hope all you spouses find a way to escape this week....even if it's just for a thirty minute break. I know we all need them. :o)
Hope all you spouses find a way to escape this week....even if it's just for a thirty minute break. I know we all need them. :o)
Friday, February 29, 2008
When does it end?
Yep, 1:30 am and I'm wide awake. He started out with the CPap on, yanked it off and is thrashing and kicking, gasping, choking for air, and I felt like I was living in an earthquake again. No, I'm not exaggerating at all. I'm in the guest bedroom and can't get back to sleep. I just want to cry.
I would love to get twin beds, but he refuses. He said he is too large for a twin bed, which is sadly true.
I would love to get an additional twin bed to put in our bedroom like a daybed....there is enough room. But he said it would make it too crowded in there and I have to agree that I would still wake up from the snoring.
He takes numerous naps throughout the day and is so tired all the time. Before he went to sleep last night, he said the calves of his legs were hurting so bad....it felt like the bones were broken.
His doctors prescribed him new meds for his feet almost 2 weeks ago and he has not been to the pharmacy to pick them up. Our HMO will re-shelve it after 7 days, so when he does go, he will have to wait to get them refilled.
I think starting tonight, I will just start out in the guest bedroom. Simply because I know that I cannot continue to sleep in a rocking bed.....and I cannot continue to manage with nights where I don't get sleep.
A lack of oxygen to the brain can kill the cells and I do think I am starting to see this. I mean, I can see the logic that when he wears the cpap, he does not thrash and he has more energy during the day, takes less naps, has less pain. Yet he cannot see that. Or perhaps it's "the present is more than the future" so when he pulls it off in the middle of the night he doesn't think about what tomorrow will be like?
I truly feel like I am watching this man die right before my eyes and there is not a single thing I can do to stop the process. He is in the driver's seat making all the decisions, going about 120 mph down the road and keeps taking his hands off the steering wheel. And I'm sitting here next to him with my hands over my eyes screaming my head off!
I would love to get twin beds, but he refuses. He said he is too large for a twin bed, which is sadly true.
I would love to get an additional twin bed to put in our bedroom like a daybed....there is enough room. But he said it would make it too crowded in there and I have to agree that I would still wake up from the snoring.
He takes numerous naps throughout the day and is so tired all the time. Before he went to sleep last night, he said the calves of his legs were hurting so bad....it felt like the bones were broken.
His doctors prescribed him new meds for his feet almost 2 weeks ago and he has not been to the pharmacy to pick them up. Our HMO will re-shelve it after 7 days, so when he does go, he will have to wait to get them refilled.
I think starting tonight, I will just start out in the guest bedroom. Simply because I know that I cannot continue to sleep in a rocking bed.....and I cannot continue to manage with nights where I don't get sleep.
A lack of oxygen to the brain can kill the cells and I do think I am starting to see this. I mean, I can see the logic that when he wears the cpap, he does not thrash and he has more energy during the day, takes less naps, has less pain. Yet he cannot see that. Or perhaps it's "the present is more than the future" so when he pulls it off in the middle of the night he doesn't think about what tomorrow will be like?
I truly feel like I am watching this man die right before my eyes and there is not a single thing I can do to stop the process. He is in the driver's seat making all the decisions, going about 120 mph down the road and keeps taking his hands off the steering wheel. And I'm sitting here next to him with my hands over my eyes screaming my head off!
Sunday, February 24, 2008
I met a wife
of a diabetic who is much worse than my husband. He is currently in the hospital with a heart that operates at 20%....after getting a pacemaker installed. The doctors told her they don't know what's wrong. And I just wanted to scream...but I didn't! :o) I am sure his nerve endings are shot. He's been in a wheelchair for years. He, too, eats potato chips by the bag and anything else he wants.
And I wonder....no, I know, this is where I am headed.
In the past 2 weeks, I have buried myself in a project for charity. A young 15 year old girl that I know is going to be doing a walk and I am raising funds to support her. It's been good. It's taken my mind off everything going on here.
Hubby has not started his new meds yet...he "forgot" to get his Rx filled. Swears he will go pick them up tomorrow. But he has been down with pain in his back so severe that he can't walk. He "promised" to call the doctor tomorrow about that as well.
I just go hide in my studio and play with my art! It is my escape!
And I'm over my pneumonia. Thank goodness. Still quite weak and taking lots of naps....but I have a clean bill of health from my doc. It was not contageous and he said I might have gotten it from working in my basement studio, so we did go out and buy 2 huge space heaters this week....it is definitely warmer down there now!
It's always sad to meet someone who is worse off than you are. But on the other hand, it truly makes you thankful for what you have and where you are in life.
And I wonder....no, I know, this is where I am headed.
In the past 2 weeks, I have buried myself in a project for charity. A young 15 year old girl that I know is going to be doing a walk and I am raising funds to support her. It's been good. It's taken my mind off everything going on here.
Hubby has not started his new meds yet...he "forgot" to get his Rx filled. Swears he will go pick them up tomorrow. But he has been down with pain in his back so severe that he can't walk. He "promised" to call the doctor tomorrow about that as well.
I just go hide in my studio and play with my art! It is my escape!
And I'm over my pneumonia. Thank goodness. Still quite weak and taking lots of naps....but I have a clean bill of health from my doc. It was not contageous and he said I might have gotten it from working in my basement studio, so we did go out and buy 2 huge space heaters this week....it is definitely warmer down there now!
It's always sad to meet someone who is worse off than you are. But on the other hand, it truly makes you thankful for what you have and where you are in life.
Monday, February 18, 2008
Guilt
A few months ago, my husband's uncle passed away. This is his mother's brother. No one told us about the death until a whole week later....too late for flowers even.
Yesterday, we got an email from his brother's wife that his grandmother (his mom's 91 year old mom) had fallen in her apartment and broke her neck and is in ICU. It happened FOUR days ago!
His parents both have cell phones and 2 additonal phone lines in their house. Yet they cannot pick up the phone and call him and let him know what is going on. His mom lives a 3 hour drive from her mom. So now, my hubby wants to fly to the nearest time which is 2 hours north of his mom, rent a car, drive to his mom's, pick her up and drive 3 more hours to take his mom to see his grandma. And then make the 5 hour drive back to the airport and fly home.
He was ready to drive to the airport as soon as we got the email. It's that knee-jerk reaction that he has to take care of things right now.
But I know that he is in no physical condition to make a flight/drive like that and I can't possibly go as I'm still flat in bed wiht pneumonia. So I had him come sit down by me and we chatted for a little bit. And I think he came to his senses when I suggested the 10 hours on the road with his incontinence. I think he heard that. But I am really struggling with the instant decisions that he has been making lately. He agreed to call his mom tomorrow and see if she is even physically able to make the drive. She is 76 and has shingles which have gone to her head with trigeminal neuralgia and blindness in her eye. I just don't think she is in any shape to make the 6 hour drive.
I don't even really understand why he thinks he has to do any of this. I go back to the "we do what we have to do in this life" thing. When my grandmother died, it was the day my oldest son was going to have surgery to insert a steel pin into his hip. There was no way I was going to leave him at the age of 14 and go to her funeral. It made me quite sad, but I also knew I could not go. We just can't always be in all the places we want to be at the same time in this life.
My husband hasn't figured that out just yet. He still thinks/believes that he has to be the hero in his family. I think it is some type of guilt driving this need in him. I wish he would just give that up and focus on healing his own body. Incontinent, feet deformed from tophi gout and charcot's foot, back pain so severe he has barely moved all week long, a body that is swelling up right before my eyes due to kidney function declining....and he feels some compelling need to jump on a 3 hour flight to rent a car and make a 10 hour drive and a 3 hour flight back.
I feel like I could write the whole script for an entire season for the TV show "Just shoot me". I think I'd give new meaning to that term!
DW - trying to find an ounce of humor tonight.
Yesterday, we got an email from his brother's wife that his grandmother (his mom's 91 year old mom) had fallen in her apartment and broke her neck and is in ICU. It happened FOUR days ago!
His parents both have cell phones and 2 additonal phone lines in their house. Yet they cannot pick up the phone and call him and let him know what is going on. His mom lives a 3 hour drive from her mom. So now, my hubby wants to fly to the nearest time which is 2 hours north of his mom, rent a car, drive to his mom's, pick her up and drive 3 more hours to take his mom to see his grandma. And then make the 5 hour drive back to the airport and fly home.
He was ready to drive to the airport as soon as we got the email. It's that knee-jerk reaction that he has to take care of things right now.
But I know that he is in no physical condition to make a flight/drive like that and I can't possibly go as I'm still flat in bed wiht pneumonia. So I had him come sit down by me and we chatted for a little bit. And I think he came to his senses when I suggested the 10 hours on the road with his incontinence. I think he heard that. But I am really struggling with the instant decisions that he has been making lately. He agreed to call his mom tomorrow and see if she is even physically able to make the drive. She is 76 and has shingles which have gone to her head with trigeminal neuralgia and blindness in her eye. I just don't think she is in any shape to make the 6 hour drive.
I don't even really understand why he thinks he has to do any of this. I go back to the "we do what we have to do in this life" thing. When my grandmother died, it was the day my oldest son was going to have surgery to insert a steel pin into his hip. There was no way I was going to leave him at the age of 14 and go to her funeral. It made me quite sad, but I also knew I could not go. We just can't always be in all the places we want to be at the same time in this life.
My husband hasn't figured that out just yet. He still thinks/believes that he has to be the hero in his family. I think it is some type of guilt driving this need in him. I wish he would just give that up and focus on healing his own body. Incontinent, feet deformed from tophi gout and charcot's foot, back pain so severe he has barely moved all week long, a body that is swelling up right before my eyes due to kidney function declining....and he feels some compelling need to jump on a 3 hour flight to rent a car and make a 10 hour drive and a 3 hour flight back.
I feel like I could write the whole script for an entire season for the TV show "Just shoot me". I think I'd give new meaning to that term!
DW - trying to find an ounce of humor tonight.
Friday, February 15, 2008
Liar again
I've noticed the past several days that he is back to taking a 6 pm shot. So tonight when he went upstairs to take it before dinner, I asked him when he changed back to 3 shots? He said, "I never quit."
Thinking how he often twists the questions I ask to give me the answer he wants, I said, "you said awhile back that you were quitting the 6 pm shot."
He said no, that he has always taken 3 shots a day.
So I found my blog where I noted he was changing to 2 shots a day:
"Creatinine level"
And I swear that he did quit the 6 pm shot...in fact I know he did.
So why lie? Did he really forget that he quit taking them? Can he not remember telling me he quit taking them? Maybe he quit for just a few days....but I seriously think it was more than a few weeks.
Either he lied back then or he is lying now.
Just makes me want to say "I don't care...do what you want with your life".
Problem is that when he goes on dialysis, if I'm still married to him, I will be the one taking care of him. And I honestly do care what he does because it has a huge impact on the quality of our life together.
Sigh. Maybe I should take up boxing so I'd have something to punch!!! OK, just kidding..I'm way too old for boxing!
Thinking how he often twists the questions I ask to give me the answer he wants, I said, "you said awhile back that you were quitting the 6 pm shot."
He said no, that he has always taken 3 shots a day.
So I found my blog where I noted he was changing to 2 shots a day:
"Creatinine level"
And I swear that he did quit the 6 pm shot...in fact I know he did.
So why lie? Did he really forget that he quit taking them? Can he not remember telling me he quit taking them? Maybe he quit for just a few days....but I seriously think it was more than a few weeks.
Either he lied back then or he is lying now.
Just makes me want to say "I don't care...do what you want with your life".
Problem is that when he goes on dialysis, if I'm still married to him, I will be the one taking care of him. And I honestly do care what he does because it has a huge impact on the quality of our life together.
Sigh. Maybe I should take up boxing so I'd have something to punch!!! OK, just kidding..I'm way too old for boxing!
A civil discussion re diabetes
Something is happening with him. It will be interesting to watch over the next month or so. He came home from the doctor this morning and sat down right next to me on the sofa. Note...I'm still pretty sick with this pneumonia. He said, "well, do you want me to bring you up to date on what the doctors are saying?" I jokingly said, "is it good or bad news?" He said, "well, not so good". So I decided...not a time for jokes!
The doctors cannot agree on how to help him.
The urologist wants to start him back on the drug that made him incontinent. I asked if he was going to buy depends and he said he did not have an option. He is not voiding everything and they need to help him clear everything out.
The rheumatologist wants him to start back on colchicine to reduce the uric acid build up in his feet. If the tophi gout does not decrease, he is looking at both feet being amputated.
The nephrologist does not want him on the colchicine as it impairs and further reduces his kidney function levels.
So the primary care has agreed to start the colchicine again with monthly kidney function tests.
He was just is a very pensive, quiet mood, the whole time he was explaining all this to me, so I decided to push the envelope and asked if anyone had discussed nerve ending damage in his heart and he said no. I suggested meeting with an endocrinologist once again....thinking that would be a place to start. He agreed, but said he thought they would just send him back to the diabetic nurse. And I said, "well, she might be a place to start with that line of questioning. I just think someone needs to be looking at this."
I then (deciding to push a little more) asked him if he had given any thought to going out on long term disability at work? He said he was starting to think about it. I told him that once they diagnose him as ESRD, then he should apply for disability, SSA and medicare and get the ball rolling. But that he needed to start discussing this plan with his doctors now as they ultimately would be the ones to get this approved for him.
This is the first time ever that he has even been willing to discuss disability. And no one got upset!
So I then made the comment that I heard the housing market was going to turn around in 2009 and I thought that as soon as it did, we should sell this place and downsize to a 1 level place. He just said, "I think you are right."
At least the seeds have been planted for future discussions on what I think are 2 major changes we will need to make.
The sad part of our conversation is that he thinks he will not be alive in a year. I jokingly said, "oh, no you don't! I know the statistics. You have 5 more years before ESRD and then you have 10 more years at least!". I just don't want him to be thinking suicide thoughts because I know that leads to depression.
I am so thankful that he is at least seeing more and more doctors, that the doctors are at least finally talking to each other about what drugs are best for him and that we are moving forward. I think that perhaps my discussion with his diabetic nurse last week has done some good. I have a feeling she heard my desperation and took it to heart!
Now, back to getting me well so I can help him a little more.
The doctors cannot agree on how to help him.
The urologist wants to start him back on the drug that made him incontinent. I asked if he was going to buy depends and he said he did not have an option. He is not voiding everything and they need to help him clear everything out.
The rheumatologist wants him to start back on colchicine to reduce the uric acid build up in his feet. If the tophi gout does not decrease, he is looking at both feet being amputated.
The nephrologist does not want him on the colchicine as it impairs and further reduces his kidney function levels.
So the primary care has agreed to start the colchicine again with monthly kidney function tests.
He was just is a very pensive, quiet mood, the whole time he was explaining all this to me, so I decided to push the envelope and asked if anyone had discussed nerve ending damage in his heart and he said no. I suggested meeting with an endocrinologist once again....thinking that would be a place to start. He agreed, but said he thought they would just send him back to the diabetic nurse. And I said, "well, she might be a place to start with that line of questioning. I just think someone needs to be looking at this."
I then (deciding to push a little more) asked him if he had given any thought to going out on long term disability at work? He said he was starting to think about it. I told him that once they diagnose him as ESRD, then he should apply for disability, SSA and medicare and get the ball rolling. But that he needed to start discussing this plan with his doctors now as they ultimately would be the ones to get this approved for him.
This is the first time ever that he has even been willing to discuss disability. And no one got upset!
So I then made the comment that I heard the housing market was going to turn around in 2009 and I thought that as soon as it did, we should sell this place and downsize to a 1 level place. He just said, "I think you are right."
At least the seeds have been planted for future discussions on what I think are 2 major changes we will need to make.
The sad part of our conversation is that he thinks he will not be alive in a year. I jokingly said, "oh, no you don't! I know the statistics. You have 5 more years before ESRD and then you have 10 more years at least!". I just don't want him to be thinking suicide thoughts because I know that leads to depression.
I am so thankful that he is at least seeing more and more doctors, that the doctors are at least finally talking to each other about what drugs are best for him and that we are moving forward. I think that perhaps my discussion with his diabetic nurse last week has done some good. I have a feeling she heard my desperation and took it to heart!
Now, back to getting me well so I can help him a little more.
Wednesday, February 13, 2008
Is it the flu or am I just worn out?
I've been sick since my last post. And flat on the sofa. So I'm getting rest...if nothing else. No fever. Really deep cough, but nothing "green". I still contend this is just my body's exhaustion and I'm allowing me to rest.
The diabetic counselor did call me back. She accidentally confirmed that he has never seen the diabetic nutritionist. And she agreed I need counseling. She said, "if I were your sister, I would agree with you, you have 3 choices...stay, leave, or keep things the way they are and I would tell you to get counseling." I told her that just hearing her say that to me helped.
Because I am not diabetic, she cannot counsel me without him. I have to go find a counselor through the normal HMO way. I will do that...when I'm feeling better. Right now, I'm just taking lots of naps, drinking lots of fluids and trying to get myself well.
And no, I can't even comment on how he's doing other than to say he is keeping his distance from me as he doesn't want or need to get this in the event it's something contageous.
From that respect....I'm having a bit of a break this week.
The diabetic counselor did call me back. She accidentally confirmed that he has never seen the diabetic nutritionist. And she agreed I need counseling. She said, "if I were your sister, I would agree with you, you have 3 choices...stay, leave, or keep things the way they are and I would tell you to get counseling." I told her that just hearing her say that to me helped.
Because I am not diabetic, she cannot counsel me without him. I have to go find a counselor through the normal HMO way. I will do that...when I'm feeling better. Right now, I'm just taking lots of naps, drinking lots of fluids and trying to get myself well.
And no, I can't even comment on how he's doing other than to say he is keeping his distance from me as he doesn't want or need to get this in the event it's something contageous.
From that respect....I'm having a bit of a break this week.
Friday, February 08, 2008
Part of the problem is just me
I was awake most of the night, and know I'm coming down with something. So perhaps part of my feelings when I posted last night were just being exhausted from the start of a cold. Knock on wood, I haven't been sick in about 4 years now. I'm hoping I can divert this one...will start on mega doses of Vitamin C as soon as he gets up.
Slept on the sofa....off and on, sore throat, ear hurts, chest congested. I think it's just exhaustion. We've had house guests almost non-stop for 2 weeks....I've been trying desparately hard to keep life on an even keel with no outbursts from him...so I've been suppressing a lot of my own emotions and feelings. Last guest left yesterday....my sis is returning today or tomorrow...it's a little less stressful with her here. She knows everything that's going on and I don't have to try and cover up so much....but I still do.
Think I will just stay in bed today and try to sleep this one off. Can't really afford to "crash" until about next Wednesday. Have to giggle on that one....But it's what I'm doing today....self-talk....I just can't get sick just yet! :o)
So, as the spouse of a diabetic, why do we continue to cover up for them? And I know that we all do it....on a regular basis. We don't want our friends to know what we really go through? We don't want others to talk about us? I sort of think it's a normal process regardless of what "problems" go on in a family....and diabetes is a "problem" when it comes to outward behavior of someone who is non-compliant.
Maybe Vics Vapor Rub will solve more than just my sore throat today! LOL!
Yes, I can "dream". :o)
Slept on the sofa....off and on, sore throat, ear hurts, chest congested. I think it's just exhaustion. We've had house guests almost non-stop for 2 weeks....I've been trying desparately hard to keep life on an even keel with no outbursts from him...so I've been suppressing a lot of my own emotions and feelings. Last guest left yesterday....my sis is returning today or tomorrow...it's a little less stressful with her here. She knows everything that's going on and I don't have to try and cover up so much....but I still do.
Think I will just stay in bed today and try to sleep this one off. Can't really afford to "crash" until about next Wednesday. Have to giggle on that one....But it's what I'm doing today....self-talk....I just can't get sick just yet! :o)
So, as the spouse of a diabetic, why do we continue to cover up for them? And I know that we all do it....on a regular basis. We don't want our friends to know what we really go through? We don't want others to talk about us? I sort of think it's a normal process regardless of what "problems" go on in a family....and diabetes is a "problem" when it comes to outward behavior of someone who is non-compliant.
Maybe Vics Vapor Rub will solve more than just my sore throat today! LOL!
Yes, I can "dream". :o)
Thursday, February 07, 2008
Time to see a counselor
Me. Yes, I've requested an appointment to get some counseling as I know I need help. He has just started to lie about everything. Today, he said he had errands to run. I know it's not errands...he's going to the doctors. And he's not telling me because he knows I want to go...and if I go, then I will know what they have told him...and if I don't go, then he can lie to me.
So I asked him if he had ever gotten in to see the Endocrinologist. He said no, they sent him back to the nutritionist who changed his insulin.
!. When did he go to the nutritionist? Because he sure didn't tell me about that visit.
2. She is the person who first changed his insulin...upped it to 3 shots a day. His MD changed it back to 2 shots a day. We jsut seem to be on a merry-go-round with this. He bounces from one doc to another and each one changes his meds. That's why I want him to get into an endo....as they can then be the one to oversee all the changes in his meds.
3. His HMO is self referral. He can call an endo and get an appointment. So why on earth doe he think I'm going to believe that "they" sent him to the nutritionist?
I am just so sick and tired of all of this that I called and requested an appointment today. I need help in accepting his lies. I need help in knowing when to speak up and when to shut up. Today...I'm just so dang tired that I can't even think about it...past the fact that I know I need help.
I just don't even want to be in the same room with him. I just look at him and think "liar". I try so hard to rationalize that this is his choice. He has made a choice to live his life exactly as he wants and I have no input into it. My option is to sit here and watch him kill himself. Oh yes, note: He sat here yesterday and ate piece after piece of chocolate candy and today, he ate 2 whole chocolate bars, 4 slices of pizza and had fast food for lunch. He won't eat a thing that I offer to fix him....tonight was grilled chicken. He pulled out a frozen pizza. Sigh.
I know I'm starting to get angry and bitter. I'm tired of biting my tongue, but if I say anything, I know it will just end in a huge fight. And I know I'm tired because he is not using the cpap and I'm not sleeping at night. Think tonight I'll just stay on the sofa. It's hard on my back....but at least I sleep.
At this rate, he may well outlive me. I'm hoping that tomorrow, I can get back to my usual happy self.
A friend said to me today that we marry "til death do us part". So I asked her if that had to apply if the other party was intentionally bringing on their own death. She looked at me so stunned and said, "good question. no answer"
Perhaps that is how it is to be....there is no answer for those of us who live with this disease, but do not have this disease.
So I asked him if he had ever gotten in to see the Endocrinologist. He said no, they sent him back to the nutritionist who changed his insulin.
!. When did he go to the nutritionist? Because he sure didn't tell me about that visit.
2. She is the person who first changed his insulin...upped it to 3 shots a day. His MD changed it back to 2 shots a day. We jsut seem to be on a merry-go-round with this. He bounces from one doc to another and each one changes his meds. That's why I want him to get into an endo....as they can then be the one to oversee all the changes in his meds.
3. His HMO is self referral. He can call an endo and get an appointment. So why on earth doe he think I'm going to believe that "they" sent him to the nutritionist?
I am just so sick and tired of all of this that I called and requested an appointment today. I need help in accepting his lies. I need help in knowing when to speak up and when to shut up. Today...I'm just so dang tired that I can't even think about it...past the fact that I know I need help.
I just don't even want to be in the same room with him. I just look at him and think "liar". I try so hard to rationalize that this is his choice. He has made a choice to live his life exactly as he wants and I have no input into it. My option is to sit here and watch him kill himself. Oh yes, note: He sat here yesterday and ate piece after piece of chocolate candy and today, he ate 2 whole chocolate bars, 4 slices of pizza and had fast food for lunch. He won't eat a thing that I offer to fix him....tonight was grilled chicken. He pulled out a frozen pizza. Sigh.
I know I'm starting to get angry and bitter. I'm tired of biting my tongue, but if I say anything, I know it will just end in a huge fight. And I know I'm tired because he is not using the cpap and I'm not sleeping at night. Think tonight I'll just stay on the sofa. It's hard on my back....but at least I sleep.
At this rate, he may well outlive me. I'm hoping that tomorrow, I can get back to my usual happy self.
A friend said to me today that we marry "til death do us part". So I asked her if that had to apply if the other party was intentionally bringing on their own death. She looked at me so stunned and said, "good question. no answer"
Perhaps that is how it is to be....there is no answer for those of us who live with this disease, but do not have this disease.
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