Tom's wife wrote:
For me, Tom is doing the swings - its my new term -- one day everything is great and he is as sweet as can be -- the next (tonight) he is clearly low and stupid and out of control and just so **#@ stupid, it drives me insane!

He tells me its because he doesn't want to go blind or lose a foot, but when I mention that he could die of a low-induced coma or heart attack - he tells me that he's not worried because I'll save him. Its enough to want to scream! When did I sign up to be a paramedic?


8/31/2009 5:46 PM
Anonymous said...
How is he doing? How are you doing?
Tom's Wife

Well, sorry I haven't been here to post! I've had a hard week - just not motivated to do a thing. So I hear you - I just want to scream! I think this past week it just hit me that we so need to downsize and move to a one level while we still can. What brought that on? Well, I spent a day with a friend who had a pulmanory embolism 3 years ago. She is in a walker. Her husband can barely breathe - they are a bit older - but are in the process of downsizing and moving and neither one of them can physically do it. She is giving things away right and left because she physically can't do anything else. It is beyond sad to watch her part with a lifetime of memories, momentos, furniture, collected dishes, etc.

And then I took a good look around this place and realized that sooner or later, I'm going to have to do the same thing! I can't just wiggle my nose and have it taken care of. But I just don't feel like dealing with any of it right now. Really bad attitude! LOL!!!

How is he doing? Not so great. His back was so bad yesterday that he could barely move. I'm going to guess it is his kidneys. He refused to call his doctor. I left the house for most of the day. I can't sit here and watch him be in so much pain. Nor can I stay here and play gopher girl for everything he wants. If he is not going to go see the doctor - I'm not going to play "nurse" for him. I agree - I don't recall signing up to be his personal paramedic!!!

9/02/2009 6:42 PM
Lilly said...
Just a thought:
Is he (or you) sure it's an optical migraine? When my husband's blood sugar is high, he gets really bad headaches. It also affects his vision. Sometimes, if blood sugar is very high, that person can't see anything.

Well, he has been having these for about 3 years now and when they first started, he did go see the doctor about them and the doc confirmed them and gave him a different medication to take for them - but he only takes this Rx after the optical migraine has started. Fortunately, he still has warning signs as to when they come on.

Note to self:

Yesterday, we were out and he was driving. Made a left hand turn from the far right (2 turn lanes) When he rounded the corner, instead of staying in the far right lane, he turned into the inside lane, cutting off the other driver - forcing him to go into the oncoming left turn lane. I said, "didn't you just cut that guy off?" and he said, "no, he pulled into the wrong lane so I just took this one".

He had not eaten anything in about 9 hours and I KNOW he was in the middle of a major low. I had offered him food several times and he turned it down. Think I need to quit going with him anywhere if he is going to do the driving. But then.....I don't recall signing up to be his chauffeur!

optical migraines

I need to start recording when he has these so I can go back and see if there is a pattern. They seem to be coming on more frequently. He is having one this morning. He cannot see anything.

DW

A good week!

In response to Sue's comment:

tomswife said...
Sue, I'm so sorry. The reason they don't want you to talk with the doctor is because they know they are wrong. They know the doctor will tell you what they are supposed to do. But we all know that's a losing battle anyway. When they are very high or very low, they are not reasonable -- it doesn't matter what is correct -- they are not in their right minds. So welcome to our club, thank goodness for DW, she is our leader in our "little" group of beleaguered wives who know what to do but never quite figure out how to do it.

Good luck!

tom's wife




Anonymous said...
Hi to all. I just read Sue's post... I am so sorry you have to go through this. Been there ... My husband is non-compliant, verbally abusive, on dialysis, waiting for a kidney. He now has "sharko", needs major surgery on his feet (with over a year for recovering for each foot), I am living the nightmare. All I can say is be strong, you know that this is his disease and no matter what you do, he has to make his own decisions. It drives me crazy, but really the truth is ... if he doesn't care enough about his own life, I cannot do a thing about it. You are in my prayers and thoughts!

I had to google "sharko" as I did not know this was another name for Charcot. Thanks for educating me!

Prepare yourself for the foot surgery. My hubby has had 1 and our MBR is on the upper floor. He got himself up there....and then I ran myself ragged running up and down stairs fetching things for him. I have already told him that if he has another foot operation, he is going to rent a hospital bed for the main floor! You are so accurate when you say there isn't a thing we can do for them. But oh! isn't it sad?

My hubby is out of town this week on a business trip and I am having a wonderfully quiet, peaceful week. I made a decision to accomplish absolutely nothing and am doing very well at meeting my goal for the week! LOL!!! Well, I am doing a bit of cleaning, and yardwork, changed all the beds - but all at my own leisure. I just so appreciate the quiet and peace when he is gone....and truly appreciate that he can still travel at this point. When he left on Monday, he was having such severe back pain that I thought he might cancel the trip. But he made it and there haven't been any crisis. It's been a really good week!

Sue wrote:

My husband is the exact image of what you describe. He has high blood pressure and diabetes. He is very verbally abusive just to me every night. He drinks beer and says he can. (Can't ...it shoots his sugar through the sky) He is very agitated and likes to argue every night. Tells me I am not a good wife,etc. (All very unreasonable) Sometimes when he is having an "episode" he smells like ammonia. What is that? He does not smell fruity breathed. I have been to the marriage counselor, to his family and he doesn't do this to them. My kids and I have suffered for over 17 years with this hard headed man in denial. He is always nice in the morning. I do not know how to get him to test his sugar. He is Type II and on a pill which he says he doesn't need. Also, he is going off his BP meds. he says. He will not allow me to talk to his doctor. Why do they scream and rant? over the littles things? Even if I am pleasant, he starts on me twisting the words and making a fight;.I leave the house and pray. Will this ever stop? I think it is diabetes that is poorly managed. (His dad was a very noncomplient diabetic and I had no respect for him...very self centered and pompous.) Mean to my husband's mother.
I wish the doctors would talk to us!
God bless...and I will pray for all of us here.

I think I remember reading something about ammonia and kidney disease - you could probably google it.

Your husband sounds just like mine. That "twisting the words and making a fight" usually happens when mine is starting down a sugar drop. I have learned to say, "I'm hungry, can we go out to eat?" and if I can get food in him within 20 minutes - we usually avert the fight.

It also helped to have his meds all changed around.

Mine won't let me talk to his doctors either. But I made an appointment with a diabetic nurse at the clinic he goes to and was pretty straight forward with her about how miserable my life was. She got his doctor to call him in and that's when they changed his insulin shots around. Fortunately, he will take the shots and all the pills they give him.....he just continues to eat what and when he wants which doesn't help a thing!

My husband's father is a diabetic as well and I see the same things in him that you see in yours. I just pray my husband's son doesn't develop diabetes.....but he seems to be very likely to do just that.

Good luck!

DW

Obamacare for diabetics

This was an interesting article: Neo-Neocon

It shows the video where Obama says we should be taking care of the root cause of what causes amputations in diabetes, rather than performing the amputation.

So yes, a diabetic should diet, exercise, test their blood sugar numerous times a day. But that will not CURE the disease and there are still going to be those who need amputations. It may postpone or prolong the need for an amputation. But he said nothing about the plan's provisions for those who need an amputation

I really liked the paragraph that talks about how smoking is a huge risk factor in diabetic amputations. But Obama didn't mention this. Why? Proably because he's a smoker who hasn't been able to quit. How ironic! He is proposing a health care plan that would look at the root cause ofthe problem and ask people to fix that. Yet what is going to happen to him if he get's cancer from smoking all his life? He doesn't seem to want to quit.

So why should he ask a diabetic to eat healthy, exercise and test numerous times a day?

That just doesn't make sense to me.

Just a few of my random thoughts that this legislation probably should be something that each and every one of us - as the spouses of non-compliant diabetics - seriously start to listen to. Because you know our husbands are not going to start becoming compliant just because there's a reform in national healthcare!

I get the whole concept that taking care of yourself from an early age will reduce health care costs at a later age. But as the President of our nation, I think he should be the first to set the example and show everyone exactly how "easy" that is to do. He should give up smoking, stop eating red meat, and we should see him jogging 7 days a week And he should insist that his wife and daughters follow that example.

One of the things that scares me about the proposed legislation is the fact that it would limit healthcare to those over 55 and that's probably the diabetes category that needs the most care.

Aside from that.....will this mean that a doctor or his representative will now come into your home to make sure you are folloiwng their orders so that they can keep health care costs down? I get that from where he said, "monitors whether they're taking their medications in a timely fashion," How does he plan to monitor medications taken in a timely fashion?

DW

You can only do one thing at a time

Tom's wife wrote: I'm sorry, it just never ends, does it? I don't want to bore you, but my husband's brother (45 years old) came out of drug rehab and decided he would try to live with us. This was against my better judgement because I was not convinced he really wanted to be clean and figured our house may be a place to get away with more of the same.

Anyway, he lasted two weeks, and when my husband and I told him that he had to participate in some type of program in order to stay - he freaked out. complained to his family that I kicked him out -- another brother just kept telling us to ask him to pee in a cup and have him drug tested. his mother said, just go to meetings with him.

with everything I do for my diabetic husband (which they just don't fully comprehend) I just can't take on the intense care needed for another adult man - who may or may not want to really be helping himself.

I'm feeling ok my decisions but the last 3 weeks have been really hard. Now I'm going away for a week of business and it will be a difficult week of long days of meetings, but I'll glad to be along in that hotel room every nite with no one to take care of but me!

thinking of you

Tom's Wife

My mom is pretty funny with some of her quotes. One she likes to use is "everyone puts their pants on the same way - one leg at a time". The other is "you can only do one thing at a time".

And while I often try to do more than one thing at a time (type on the computer and talk on the phone is a good example) I usually make a mistake either talking or typing when I try that!

Tom's wife - you really can't be expected to do more than be there for Tom. You certainly can't allow anyone to guilt you into taking care of anyone else. I was going to say "right now"......but I think I will change that to "ever". I think once I am done caring or my husband...I will have nothing left to give to anyone else.

And I agree with you totally. No one really understands how much goes into taking care of someone who has diabetes. It's almost endless. Or should I say it's constant? Even when you are gone traveling on business - you don't stop caring, calling, checking in, making sure all is well, etc. But I also know the true rest that can come while completely alone in a hotel room. Almost worth $100 to get away one night a week!

While my hubby doesn't travel much any more, he is going to travel next week and suddenly, I am looking forward to a week here alone.

Hang in there. You made a good choice in refusing to care for his brother. One at a time is more than enough!

Linda wrote:

I am new to this -went looking for something on the internet in the form of support. My husband has been a diabetic for over 30 years, had a lower left leg amputation in 2003 and is currently fighting an infection on his right foot (that in itself is a very long story). It is coming along but on Monday his blood sugar was so low that I ended up calling 911. I have not been at ease since. Scared me to death, for sure. Praying alot. I will keep reading this blog. Thank you - I feel so overwhelmed at times.

Linda, my suggestion is that you seek professional counseling. I know you must be really scared that he is going to die or something worse is going to happen....but I think you need to mentally prepare yourself for this. Because it's going to happen sooner or later. He might live for quite some time, but he could go tomorrow and as scary as that is, I think each one of us has to prepare ourselves for that very fact.

My husband had an angina attack in May and still hasn't been to see a doctor for that. It's usually a "warning" that a heart attack could happen or a stroke. I waffle between denial (since his has been doing so well) and reality (because he did have an agina attack).

I pray a lot, too. I think the praying helps calm me down - mabye like meditation. It centers me. And I think we all feel overwhelmed most of the time. It's just such a horrible disease. They can go so low, at the drop of a pen. So fast, and you don't have a moment to prepare yourself. You can be engaged in normal every day living one moment and the next moment, the ambulance is at your door and you are on the way to the hospital. It's so nerve-wracking.

I have days when I think I should wipe my calendar clear and just wait But the therapist I saw told me not to do that. She said that I needed to have something to do to keep me busy every day. That I needed to get a job, volunteer, teach, get out of the house, go somewhere - keep myself busy I took her advice and I think it was good. But I still have moments when I think I should quit everything that I do and be here just for him. I'm sort of glad I didn't take that path

Hope you can get past this and back to a more normal life.

DW

Parkinsons? Or neuropathy?

We went to dinner tonight and when he went to cut his steak, his right hand just started shaking violently. It's hard to describe but I had never seen anything like it before. He laid his hand down on the table, used his left hand to remove the fork from his right hand and let it just lay there. When he went to pick up his fork again, it was still shaking, but much better.

It truly looked like an extremely severe case of parkinsons. I asked him about it. He said that there are no nerves left and sometimes, it depends on the angle of his hand when he picks up his fork, it will just shake like that. He just has to rest it, change the angle and start over.

Scared the crap out of me! I was just glad he didn't have a sharp knife in that hand...he could have cut himself.

I just have to wonder, "what next?" Sigh.

DW

It was a great trip

Yes, I'm back. Was gone 3 weeks. And I have decided that I can't be gone for more than 2 at a time - just too much left unattended here at home while I'm gone.

But I did come back refreshed and renewed. I had a wonderful time - 1/3 at an art conference, 1/3 with family and reunions, 1/3 at a girlfriend's house for a true get-away. I crammed way too much into a short timeframe, but it sure was fun!

The infection in his knee seems to be improving. He had a horrible day yesterday, but today was much better. You can actually literally see the pain in his face these days.

So, my next "problem". I know that we need to downsize and move into a 1 level place before he gets to the point where he can't make the move. But how do I convince him that we need to make the move now? I can totally see a time in our not too distant future where he is going to be unable to do stairs and we are going to have a dialysis machine in our home. He does not see that and doesn't think it's going to happen for years.

We have over 2/3 acre here and I have huge flower beds that I can't really keep up with any more. He can't help at all. I'm managing to get in an hour or 2 every morning....but I see no end in sight and keep thinking that I can't keep up this pace but a couple more years, if that! And no, I can't plow them under or plant grass.....just wouldn't work for the terrain tha we have.

And for the record, he still has not been to see a doctor about the angina attack he had back in May. I'm sure he's not going to go.

DW

Just an update

He has had a bad infection in his left knee and left wrist for the last 4 days. Yesterday he started having an infection in his right knee and said his back hurt so bad he could hardly sit.

Today, he sat in the recliner with a heating pad on his left knee.

I asked him tonight if he thought maybe it was time to go see a doctor and he said, "maybe in a few days or so" - which translated simply means that he's going to wait at least a week and see if the pain is any better.

I've started back doing yardwork - 2 or 3 hours every morning. Someone has to do it. And he simply can't.

DW

My sister

is perhaps the best monitor of what's going on with my husband. She only sees him once every couple of months.....not every day like I do. So when there are gradual changes in him physically - she notices them. Simply because they are so gradual, I'm unaware of them.

She was down today and commented on his labored breathing. I had not noticed that at all....until she mentioned it. He is still suffering from an infection in both knees and his left wrist and I had to wonder if the labored breathing is just part of his pain level. She didn't think so. She thinks it's due to his weight which I am going to guess is up to about 300# at this point. Might be around 275.

She also pointed out how often he said today that I was never around....that I was always traveling....that he missed me when I wasn't here. Well, we have both been traveling more this year in the past...but it's not just me. He was in gone a week on business, then 3 weeks at his parent's house and now he is going to be gone a week or 2 on business.....and I was gone 3 weeks on business. So yeah...we haven't been together much in the last 3 months, but it's interesting that he sees it as just me being gone! LOL!!

He did pass on dessert tonight and said that he has learned sugar brings on his joint infections and irritate them and I thought that was great! I think this is the first time he has passed on dessert. At the same time, it's an indicator that the pain is substantial enough that he's willing to make changes in his diet to improve it. That's good!

more infections

I've been traveling and teaching the past few weeks and am back home. He actually did pretty well while I was gone. Only a couple of minor crisis! But he has a pretty bad infection in his left knee and left wrist and a really bad looking spot on his left ankle. I honestly don't know how the poor guy manages to move at all.

Type 2 Diabetes IS A DISEASE!!!

Anonymous made a comment to my blog "My inacurate picture"

Type 1 diabetes is an autoimmune disorder

Type 2 diabetes is not

Just to clarify

I think there is something major wrong with "anonymous" who obviously did not read all of the previous post. The discussion was an argument from a diabetic that diabetes is not a disease. It does not matter whether you have type 1 or type 2.....any type of diabetes is a DISEASE.

Disease:

1. a pathological condition of a part, organ or system of an organism resulting from various causes such as infection, genetic defect or environmental stress and characterized by an identifiable gorup of signs or smptoms.

Tell me what part of Type 2 Diabetes does not meet that description?

2. an impairment of health or a condition of abnormal functioning.

Hmmm.....I think it meets that definition as well.

Now, I realize anyone can find a thousand websites that will say that diabetes is not a disease....but each one of those sites fail to give you a dictionary definition of what a disease is. Go figure!!!

Wikipedia calls both types a disease

Answers.com calls type 2 a disease

I could go on forever. Whoever it is that doesn't want you to understand that you have a DISEASE needs help. The first part of any process to get past grief is to acknowledge that you have a disease. As long as you are in denial...how do you expect to recover. And anyone assisting you - keeping you in that state of denial is not helping you one bit at all.

Perhaps if ALL diabetics realized that they are dealing with a DISEASE.....they might start to understand the serious complications it can cause.

And perhaps the anonymous writer would like to explain to me how type 2 cannot be considered a disease when the CDC - a national agency - says that it is!

If you have this DISEASE....I suggest that rather than try to prove me right or wrong on a topic....you READ, READ, READ.

And quit trying to argue your way out of this disease. You have it. Admit it. Deal with it. Get on with life!!!

oh, if you were just trying to make sure I understood type 2 is not an autoimmune disorder....oh duh! You really really really think I don't know that? I think you just made yourself look completely illiterate. :o

How a "high" might be a "low"

Jim wrote:

You said:
"Why is it that so often when they go low, they think they are high? I wonder with neuropahy and their lack of sensation....do the sensations they have get mixed up?"

I'm only a Type 2 diabetic, but I've experienced many extreme lows and a few extreme highs. At either extreme, my thinking get so muddled that I don't know what's going on.

Thank you Jim for explaining that. It would explain why somone who is low might think they are high and vice versa.

thank you thank you thank you. you are now my haven. and yes, he was "just fine" today. when I asked him (he got up and went to work before I woke up) he wondered why I would ask. He goes through an episode like that and wakes up feeling terrific having had a wonderfully deep sleep. Its so unfair!

But now it is Friday, and I plan on sleeping as much this weekend as possible.

take care,
tom's wife

Well, I'm glad to here he is better. And I hope you get tons of rest this weekend!



I will be gone starting tomorrow until the second week of August. I will check in if/when possible. May each of you have a joyful, stressless summer!

DW

Dear Tom's wife

For all of you who think I make this stuff up, read her post:

I'm so glad that works for you. As for me, I wrote to you earlier this week that my dh had two low sugar twice while driving with me during the last 7 days. Well, last night he had a MAJOR low. I got home about 9:30 pm and didn't realize at first that he was low, he chatted (a little more than usual - I should have figured it out based on that :|) But then I looked at his eyes and realized he was low and asked him to check his blood. He did and told me it was 135. I believed him (why am I so stupid?) As it got to 11 pm he just kept getting worse, saying weirder and weirder things.

So I tried to get him to test again, but he said his glucose monitor was broken and he wouldn't let me get close to his pump which has a testing device on it. I couldn't find a spare device either.

Frankly, he is just too strong for me and I can't fight him. But I don't need to test him to know he is low -- his behavior and the way he looks is enough for me. something is terribly wrong.

So, I told him if everything was broken I would take him to the hospital, they have working devices. No, that wasn't ok with him. so, I said I would call 911. No, that's not ok. So I gave him OJ. He threw it on the floor. Was I trying to kill him? too much sugar is the problem -- he thinks he is high.

well, I have seen him high and I've seen him low, and let me tell you. He was low -- very low.

Finally we got what MAYBE was a fairly accurate test and this was about 20 minutes after maybe 4 oz of OJ. His glucose was 53.

Then he decided it was 11 pm and time for bed. So he turned off all the lights and went to bed. Ignoring me completely. Frankly, I don't know how he made it up the stairs, I thought he was going to fall back down.

But I stayed calm, he kept asking me what time it was, what day it was, and even what year it was. Geez. by this time, I'm exhausted, my work is really stressful right now, my father is dying of cancer, and my mom is really depressed. why does he do this what always seems like the worst times to me?

So he went to sleep and was up all night making sure he was alive. I know I'm not supposed to do that. That if he chooses to do this to himself I can't change this. but, its just so hard.

thanks for letting me "talk" to someone who really understands. when I told my sister a shortened version all she said was, this is really old isn't it. I didn't hear much sympathy in her voice. Nor, as you reference, much humor.

thank you for giving me the forum to share.

You poor dear! Yes, it does get really really really old....but that doesn't mean it is going to go away or get better or get easier. And yes, you are not supposed to stay awake all night long to see if he is alive or dead. But when you love someone, how can you not stay awake and worry? It's like second nature. It's what we do.

You didn't mention how he was today. I hope better. Why is it that so often when they go low, they think they are high? I wonder with neuropahy and their lack of sensation....do the sensations they have get mixed up? That would seem to make sense.

I really want to move to a ranch house. Stairs scare me to death. One low and he could go tumbling down and break his neck. Other's may laugh and pass it off...but I really do understand what it's like as you watch their every step, wondering if it will be their last.

The sad thing is that one of these days, it will be their last. Brought on quicker than necessary because they refuse to take care of themselves. My blessing at the moment is that I don't work. So if I'm up all night long, I can usually get in an afternoon nap. I don't know how you mangage to go to work every day. I'll keep you in my prayers!

DW

Maybe this is the answer......

I don't know, but I'm sitting here giggling. I have given my husband a HUGE project to do. I'm off to present at an international conference next week and I actually managed to put together a movie with 16 tutorials in it. So I asked him if he could produce it as a DVD with titles, chapters....just like a real DVD. And that I would put his name in the credits as "producer".

He has been so happy all week! He bought some new equipment that writes the title right on the cover of the DVD and of course, it was too long for a normal DVD so he ordered in some new dual layer DVDs. He has had setbacks...but he has kept at it and today managed to get 10 done and they are just perfect!

So maybe the answer is to load him up with tons and tons of things to do that he enjoys (he loves anything to do with animation and movies) and he won't have time to get "low". It seems to have worked for the past 4 days!

And I have to say that other than the intro segment where you can see me talking....the entire DVD is extremely professional! I'm tickled with the results and I think he's as pleased as can be. I will just keep the compliments coming in as it gets distributed at the conference next week.

I've already told him that when I get home in 3 weeks, I want to do a second DVD with more advanced technique tutorials.....so he's out looking for better equipment to help him through the process!!!

Funny guy!

DW

Death by chocolate, beer and hamburgers

My pals tease that we are going to have to write a book and call it

"death by chocolate, beer and hamburgers"

I'll feed mine chocolate
The one who's husband is an alcoholic is going to pour beer down him
And another one who's husband has high cholesterol is going to stuff hamburgers down him.

Could be the perfect crime novel!!!

I think it's the laughter of good friends that get me through the bad times.

So my advice might be to surround yourself with women who can support you and be there for you when life falls apart.

I probably have not mentioned here the incredibly amazing network of female friends that I have where I live. They totally understand my situation and can often recognize a low before I do.

But more than anything, they bring laughter into my life.

And laughter heals so much!

Almost too long

Here's a rather lengthy post:

I just ran across your blog today and it was a relief to learn more about this disease. I am fairly new at this. I have only been married to my diabetic husband for 7 years and he has only been diagnosed for about 4 years. We should have seen it coming because his mom, dad, and maternal grandmother had diabetes. We do not check his sugar very often, but it is always very high. I have read that over time a diabetic that has high blood sugar will eventually start going from high to low and begin that cycle. I have always contributed his anger to his diabetes, but I see on your site that your husband's episodes are when his sugar is low. Can this happen if it is high? We use natural remedies for all of our illnesses and this is the biggest medical thing that has happened to us. He does not want to go on meds (I don't want him to either, because they cause more problems)but he hasn't been the best at doing the cinnamon, garlic, dandelion, and other herbs plus the vitamin supplements. His job keeps him from being able to exercise regularly and, being a former Marine, he misses that discipline. He drives a truck and has to be certified every so often and that's when he takes a prescription so he can get the signature and then he gets off the meds.

Being young and inexperienced with this condition, I am not as familiar with the many problems that your husband has. Of course I worry about our future and that is mostly because of our children. I am a homemaker and when we began our family we chose to homeschool. We sacrifice many luxuries so that we can afford to live on his income. We refuse to put our three children (and one on the way)in daycare or public school. The reason I can not call this "his disease" and not mine is that we are one. If he gets ill and can no longer work, then I would have to go to work and not be able to care for our children. If he dies I will have to find someone else to take us in and become a husband and father to us. I have reminded him of this often and at times I ask him who his choice for my future husband would be. This is my way of reminding him that he is our provider and that we need him to stay healthy.


I hope I can encourage you as much as you have educated me. Sometimes I sense a bitterness and a coldness in your attitude and at other times I can feel the love you have for your husband. I am married to a "command man" meaning that he is demanding, expects to be waited on, and determined not to be nagged or led by a woman. I don't expect to ever change him because that is how God made him and it is up to God to change him. I can not neg him into "compliance" any more than I can make the stars move in the sky. When I do try that approach it just makes things worse. It is hard on me at times, but I married him for better or worse. It is definitely worse when he is angry and blaming me for things that I have no control over. It would have been easier to marry a "steady man" but I did not know about these things then.

I do love my husband and for that reason I stand beside him. If he chooses to refuse treatment, if he becomes sick, if he get disabled because of this disease, I will treat him every day as if he were the man of my dreams. I will lift him up in prayer and pray for God to change him. I may even pray that God does "whatever it takes" to wakt him up and make him take charge of his disease. When he can't get a certificate to drive and loses his job I will pray for God's mercy and another job. When he dies I will mourn and then I will move on - for the sake of my children. He knows what he is doing and I will allow him to be a man. But I will not say to him that he is alone in his battle. I can not tell him that this is not my disease. He needs me to be his anchor and his support. I am his help meet (a helper suitable to him) and I will meet his needs. I will check his blood sugar whenever he wants it checked - he does not want to check his own. I will buy foods that are good for him and not buy sweets except for special occasions, even when he mentions every week that he wants me to bake a cake or pie. When he wants to pig out I will let him and not nag. But I will continue to tell his daughters to tell daddy, "We don't want you to die from diabetes." And I will occasionally say, "I wonder if so-and-so from high school has ever married?...."

I wish that you could bring yourself to feel this way. Perhaps he would be changed by your honor and respect and renewed concern. I can tell you are afraid to lose him, but I think you have built a wall that has allowed you not to feel that sometimes. It's easy to say "it's not my disease" when it doesn't affect you, but everything my husband does affects me.

I suppose you think I will grow older and wiser as a diabetic's wife and become bitter and hard-hearted over the years. I plan on fighting that attitude by becoming all that my husband needs me to be - until the end. I play on growing wiser in ways to help support and encourage my husband. I am not saying these things to disrespect you, but I just wish you could feel the joy involved in being such a helper to your husband. I am not saying that he deserves to get everything he wants, but you already know that it does no good to go against him. So why not let him destroy himself, endure a little disrespect, and enjoy the time you have left with your husband. I know you have needs - all wives do. But it is a glorious thing to put someone else's needs above your own. Although he may not say it he needs you now more than ever. Perhaps if you would act a little more vulnerable he would realize that you need him to stick around a little longer. You could do some research on natural remedies. It is proven (if you look in the right places) that drugs for diabetes cause heart problems. All man-made drugs lead to further complications and side effects. He is in a rut and can't get out. Maybe you can be his salvation.

There is a tea called "Dr. Cinnamon Tea" www.bulkherbstore.com) that is supposed to be good for diabetics. There is a great book on marriage call "Created To Be His Help Meet" that has shown me how to love and honor my husband-no matter how bad it gets. (www.nogreaterjoy.org) I can not control him, but I can control myself. I choose to be a blessing rather than a curse to my husband.

You may think I am trying to be mean and hurt your feelings. I really am not. I completely believe what you say you are going through and I can understand how it feels-to a smaller extent. I also think our husbands react a lot to our attitudes and that we can change a lot just by letting them lead. I guess I will stop now. I hope I didn't upset you. I truly do think you can change your husband's outlook.
-RD

I think you must be quite young and have much to learn about life and about living with this disease. Your husband has had diabetes for 4 years, mine has had it for 35 years. Huge difference in what the disease does to the body over time.

When my hubby goes high, he gets very nervous, like being on edge, maybe aggitated is a better word, so yes, he get's angry then as well. But it's a different kind of anger. Maybe "high" is an aggitated, nervous anger and "low" is a bad mood anger. I can't explain it, but it's different. Yet it can happen at both ends of the spectrum.

Do you understand that each of your children will have a good chance of inheriting this disease as well? Best thing you can do is start a family nutrition program now. And stick with it like a religion.

I understand what it means "that the 2 shall be 1". And of course, you will sense bitterness and coldness in my attitude - probably more often than not. After your husband has been incontinent for months and the mattress smells of urine....we'll see how your bitterness level is! :o) I think it comes with time. But yes, I do love him. Still.

I will have to disagree on "this is how God made him and it is up to God to change him". God did NOT make my husband like this....his non-compliance has made him like this! His refusal to exercise, monitor his blood levels, eat right...that's all that has made him like this. God created a perfectly healthy man, added diabetes and let the man decide how to handle it. I think "my man" failed misearably!

"I will pray to God to change him". Good luck!

Not sure it's such a good idea to have your daughter get in the middle of all this by having her tell her daddy she doesn't want him to die. I may be manipulative, but I don't think I'd ever do that! And I certainly never "threaten" my husband that I might marry someone else when he dies. He knows well that if I leave it will be because he refuses to take care of himself.

You may not ever get bitter and hard-hearted. I don't think I am that at all. I tend to think I'm realistic. I know he is not going to change, so I don't pray for that. I know that he is not going to take better care of himself. Part of that comes with age. If he hasn't made changes in the past 35 years.....it's not going to happen now. Maybe that's realizm and that wins out over optimism and hope over the years.

Hmmmm....and explain to me the joy in assisting him when I clean up soiled matresses? Nope...I just don't see that! It must be your youth! LOL!!!

As far as a wife that has needs, my dear, you need to understand that when the nerve endings die.....that includes those which make sexual relations possible. If the drugs don't put an end to that.....the neuropathy will. Not even viagra will help that after a few years. I fear you have much to learn. But I think it's really good that you are getting involved now so you will know what is going to happen and you can go forward with no surprises.

Youth and innocence are such bliss! Read though all the past blogs and comments. You will see that a diabetic who is non-compliant is not about to take natural remedies either. And I'm not sure natural remedies are going to help while he continues to consume bags of candy and potato chips.

I don't know why you think I'm a curse to my husband, but I find that funny! I doubt he would think that at all. I am his best friend and he is mine. When he is having normal sugar levels, he is complete fun to be around. You haven't upset me at all. I just see this as the total distance between youth, naivity hope.......and age, experience and knowledge.

Good luck at changing your husband through prayer, support, whatever it takes. Print this out and read it in about 35 years. It might be fun!!!

Diabetics Anonymous? Who would attend?

Another comment:

Hi--with HIPPA laws, I wonder what kind of effect this could have, but is there any way you could contact your husband's diabetes doctor (I can't remember if he sees an endocrinologist or not) and tell them that you would like the doctor to have your husband consider doing a trial of a continuous glucose monitor? I've done 2 day trials in the past, and the results can be really eye opening. You could print out the results and then show your husband exactly where he is going low and exactly how it coincides with his behavior. If the doctor pooh-poohs the idea, explain exactly why you think it is needed (the family history with his daughters, your own experiences, etc.).

Also, I don't know where you are based, but some of the larger medical centers have therapists on site who have backgrounds in diabetes. Would it be worth contacting one to get coping tips for living with a noncompliant diabetic?(Maybe they'd do phone sessions if you're not local). I know you say it's not your disease, but it's like how Al-Anon is for relatives of alcoholics--it'd be to learn how to better deal with someone who has a particular disease.

We have insurance through separate companies, so I can only talk to my own insurance providors. If you read back through my blogs, you will see that I have been to diabetic counselors, nurses and nutritionists - educating myself as much as I can and coming up with a wide variety of ways to deal with life as a spouse of a non-compliant diabetic.

He does not see an endocrinologist - and I have asked him to do so on a number of occassions.

He would never consent to even a trial of a continuous glucose monitor. I have asked him in the past. We have done the manual testing with a grid and a scale comparing lows to moods. Under a nurse's supervision. It made him etremely angry. He knows the problem exists. He simply chosed to ignore it.

Interesting comparing being a spouse of a non-compliant diabetic to being the spouse of an alcoholic. I think we'd have to put that as an alcoholic on his last legs! My brother-in-law is an alcoholic and I would take that any day of the year over this. I know you are trying to be kind - maybe we could start a diabetics anonymous. I just don't see anyone attending.

In Alcoholics anonymous, the alcoholic admits they are an alcoholic. The apologize to others for what they have done to them. They attempt to quit drinking.

My husband is in total denial as to what diabetes is doing to him. He has never apologized to me for what he puts me through. And he's not about to quit this inch-by-inch suicide mission he is on. He ate a box of girl scout cookies 10 minutes ago.

Edona wrote:

I feel for you. I thank you. My DH would never blog, let alone read a blog, but he would completely understand the shoes you walk in. I've been Type 1 diabetic for 37 years. My DH and I have been married for 15+ years. I always, always thank him for marrying me, because I know it was probably one of the hardest things he's ever done. But, he's stood by me. He's picked me up when I've fallen (on floors, through shower doors, etc..) with a low blood sugar. He's learned to tone me out when I'm ranting with a high and he can set his clock to the minute when I come down the hallway after a shower and a pump change and my sentence starts with "Guess what...?" He and our two kids all shout in unison... "you hate diabetes!". Sorry about the stalker. They're out there! And, there do seem to be a lot of angry ones.

Thank you!!! It is amazingly wonderful to read from someone who knows what they put their spouse through. Thank you from all of us!!!

Lyrehca said...
I know your husband would probably never consider anything like this, but there *is* a warning system that gives you an alarm when you're heading low (or high): the Dexcom continuous glucose monitor.

It would be interesting for your husband to do a trial run of one for a week to see exactly where his blood sugar is all the time.

You know it! He's nt going to ever do anything like this......but I would love it if he would. He probably is not a good candidate for any type of continuous monitor as he would never clean it. How sad is that?

You know, I do sometimes wonder if there is an element of the fact that we are talking about men -- you know the Y chromosome.

I never thought of my husband as the macho type but he is a caretaker and he really does need to be in charge and he likes to be the car-driver and (ok, I'll stop, you get the idea)

Now that I spent the weekend on the internet looking for on-line opportunities to "chat" and seeing your response - I get it. first, some people are SO defensive - they don't understand that we aren't really saying these things so much as a criticism of them but as a place to go to share our feelings and get validation for what we feel. Of course, we think they are wrong -- because so much of what they do, well is wrong. But that's not the point of this space -- its really to share.

I looked on one website (I won't name it you probably know) and they are all about being "kind" to each other. Well that's all well and good but it really doesn't help when you are desperate and scared and think you are the only woman in the world who thinks that she is the most horrible being because she can't handle one more time when her husband hits bottom.

and we do appreciate you filtering out the screaming "jims" who want to make us feel bad. we are not bad, we are burdened and loving and caring and we try so hard to do the right thing.

we know its difficult for them that's why its so difficult for us. otherwise it would be easy for us to leave when they abuse us so terribly. who else would put up with the type of emotional garbage we get?

Now I'll stop and leave you alone.

You are terrific I wish you a wonderful trip. Tom's wife

Dear Tom's Wife. It's just not online....the diabetics I meet in person are completely defensive. Some of my art pals are starting to open up and talk to me about it. A couple have even acknowledged their denial. Most of them are women who don't "have the time" to eat right or test. I find that a bit humorous as I think we all still have 24 hours in a day!!!

I tend to call a spade a spade and just don't go in for that touchy-feely stuff. Doesn't seem to help me one iota when he slides of the chair into a coma on the floor. And as you said, when you are scared to death....no help in being kind and polite and politically correct at that moment either. I have often wondered what a non-compliant diabetic does when no one is around. And I know that is exactly why my hubby often comments that his worst fear in all of life is that he will die alone.

Thanks for your post. There really is comfort in knowing we are not a lone and in understanding the moment-by-moment battles we each face.

DW

My inacurate picture?

I just love this! Again, from my "angry" follower......

Actually, I am not angry about the disease - well diabetes is actually an autoimmune disorder but let's not split hairs.
What I am upset about is the inaccurate picture you portray on your blog.
I know you get more negative comments than just my own because I have talked to other people who have posted them.
Do you know what you are doing to the diabetes online community? You say you are on here to seek support other people, but that is not what you do. You just vent YOUR anger. Who does that really help other than you?

First, you need to be very careful what you write to me. Look up the word "disease". It INCLUDES "autoimmune diseases" and that, my dear, includes autoimmune disorders!!! So, therefore, I will stick by my words.....diabetes IS a DISEASE!!! I'll split hairs with you any day! LOL!!!

Second. Yep, you have no idea how many negative comments I get from ANGRY diabetics. And I think I'll start posting and commenting on all of them if that's what it's going to take to prove my point. Which is.....

Third. This is MY blog. It is about MY life - living with a diabetic. It's not about being a diabetic. It's not about you. It's not about diabetes as a whole. It's about the finite life of one woman dealing with her own individual life and what goes on here. So of course, I vent my anger. That's why I started this blog. Duh!!! A Nurse Practitioner in the diabetic clinic actually told me to start writing down my feelings!!! I never set out to help anyone else. I chose an online blog because I just knew I was not alone in what I was going through. I now KNOW for a fact that there are numerous other spouses who deal with the very same thing that I deal with and I'm learning that many, many, many of them are much worse than me. But when I started this blog....I really thought I was the only person in the world dealing with this.

Fourth. Who does this blog help? Well, probably not the diabetic, that's for sure. But I imagine it does help other spouses. From the comments I've received, I believe that it does. There is comfort in finding out that you are not alone. There is peace in realizing that it is not you going crazy.....it is the diabetic having highs and lows, not remembering, that is the problem.

Fifth. I don't for one second believe I portray an inacurate picture. In fact, if you really read all the way through my past posts, I think if anything, some of them have been way too acurate! My husband's loss of bowel function for instance....brought on by neuropathy of the nerves in his intestines....couldn't get much more accurate than that!!!

Here's what I think. That the medical community wants to cover this up. After all, what kind of press would it be that a diabetic who has a normal A1c could possibly still be going high and low 24/7? Wow! Let that one leak out!!! And of course, they want their meds to cure it all, so the diabetic couldn't possibly be doing anything negative to the family, right?

And then you have the diabetic who can't remember what awful things they did to their family when they were "out of it". My adult step-chldren believe that they grew up with an abusive father. I have lived with him for 10 years. The only abuse I have seen out of him is when he is in a low. He was horrified when I read to him something his daughter had written about her memories of her childhood.....because he doesn't remember treating her that way at all.

So, all this leads me to believe that you (the writer of this comment,not the entire diabetic community) are in complete and total denial about what you do to those who surround you. I think most of the spouses would agree with me on that one. After all - when you drop into a low, you most often don't remember a thing you said or did while in that low, so how on earth would you know the impact you have on any of us?

It takes an incredibly strong spouse to stand up to a diabetic. The worry alone that you go through when he goes into a low is draining. The constant mopping....LOL!!! I could go on forever. I'm just not sure there is a diabetic out there who actually understands what a spouse goes through. I don't think it's possible because of the problem with memory loss during lows (and highs).

Denial is just a beautiful thing - as long as you are the person doing it. This blog is for those of us who continue to stay with our spouses, assist them, take care of them, love them.....while we watch them destroy their bodies and their lives one ounce at a time.

Go ahead, make another annonymous coumment for all the good it does - you seem to just be proving what I am writing about beyond a shadow of a doubt!!!

What I want the diabetic community to agree to is that this is YOUR disease, not mine. It is Your body, not mine.

I am here simply because I love my hubby. But in no way does that obligate me to put up with, endure, absorb, take in, deal with......anything related to HIS disease. I do it because I love him, not because some set of "rules" out there tells me that I have to. And once a spouse realizes that.....and realizes that they can change their mind at any moment and walk away from all this - that provides us with the freedom to continue on doing what we are doing.

This blog is also for anyone who has left a diabetic spouse. We undestand completely and totally - you did it to keep your sanity, you did it to survive.

I see my future in this post

Anonymous, I read your post with great sadness:

Geez, I don't know where to start... First of all, I do NOT ride in the car with my husband, I do all the driving. Diabetes effects the vision big time. When his numbers are off (all the time) his vision changes ... scary stuff. My husband eats whatever he wants, does take a ton of meds, is on dialysis. Kidney failure can happen almost overnight. As far as monitoring meds, you have to monitor meds, food, exercise and overall common sense. If you think it is bad now, what until dialysis. You can only have 32 oz. of liquids a day (includes all liquids)... It is a nightmare!!!!!!!!!! I clean my floor all the time. Pills that he doesn't see that he drops, just dropping things because he can't feel his hands. It is terrible. when you go on dialysis, dialysis only removes so much poison, it does not remove phosphorus, potassium or calcium, so you take so many extra pills. And of course, if you are "non-compliant" like my hubby, you end up with complications that are unbelievable. My hubby has been in a cast, "crow walkers" and now "special shoes" because both his feet and ankles have collapsed. So there is no party going on in my house... but he still eats chocolate, lunchmeat, and all kinds of sugared drinks. That's what I call non-compliance!!!!! If I can say anything to all that just think this disease will just "go away" ... it doesn't! Take your blood count, don't eat or drink what you are not supposed to have, exercise and just take care of yourself. It is a living hell for you family if you don't. We have 5 kids (including a child with special needs) and life has become so difficult. The sad thing is that it could be so much easier if only my hubby would leave the sugar and lunchmeat alone. Obviously, it has been a really challenging weekend at best. It does feel good to know that others can relate. I just wish that people with diabetes would wake up and understand what they are doing to the people who love them with all their hearts. When I look into my childrens eyes, the pain of what their father is doing to them is almost unbearable. Please look around at the ones that you love and stop and think ... Life is too precious ... Love us back as we love you!!!!!!!!!!!!!!!!

Thank you for this post. I think it should be an eye opener to every spouse out there. And I guess perhaps mopping the floor every day is just going to be in my future.

With my hubby at 20% kidney function, I know it is just a matter of time before he goes on dialysis.....since he's not doing anything to prevent it. I honestly don't think he has a clue how bad it is going to be. I don't think I have a clue.

I truly feel so sorry for you. And sad for your children. I don't see how he can do what he is doing to himself, to you and to your family. But I think there are so many, many, many others in this same situation.

But here's a question I've been pondering for some time now. Your last sentence hit it hard. Can they love us back? If you don't love yourself....how can you love anyone else. And certainly, they must not love themselves the way they treat themselves. It just doesn't make sense to me.

Here's wishing you the very best. My prayers are with you tonight.

DW

My hilarious diabetic stalker

Some people are just way toooooooo angry about having this disease!

If you move it to a forum that you couldn't moderate then people would find out all the angry comments you get from people who HAVE walked a mile in your HUSBAND's shoes - something YOU have never done. From people who actually UNDERSTAND diabetes.

You can continue to moderate my comments just as I can continue to comment anyway.

You just have to feel sorry for someone like this. Don't know if it's a man or a woman, but apparently someone who has diabetes because they "have" walked a mile in my husband's shoes.

A. My blog is about spouses. NOT about diabetics.

B. This is about living with someone who has diabetes. NOT about living with diabetes.

C. This is about walking a mile in a spouse's shoes....NOT a diabetic's shoes.

D. This is about actually and literally understanding what people who have diabetes do to those around them.

So dear anonymous....I just pray that one day you can get past your anger and figure out what the heck it is I am writing about! I'm not writing about you, the diabetic, I'm writing about my life, about what I deal with, about how it is to be married to a diabetic.

Why on earth do I want to post "all the angry comments" I get from diabetics? I understand you are angry. That's what makes being a spouse so difficult - we have to live with all your anger.

So there, I have posted your comment. Perhaps one day you will understand that this blog is NOT for those who have walked a mile in my husband's shoes. It for those who have walked a mile in the shoes of someone married to a diabetic. :o)

Before you send me another snooty comment....think about that for a bit. If you have really walked a mile in my husband's shoes....do you understand at all what I am going through? How could you? You need to be married to a diabetic before you can possilby understand what a diabetic puts their spouses through.

The fact that you still don't get that is what makes all this so hilarious.

DW

Jim wrote:

Is there a little inconsistency here? On the one hand, you complain about non-compliance, but then you say:

"But for me, the worst thing is the 800+ pills that he takes 4 times a day. Ok, I am exaggerating, but you get the point! Each and every one of them puts a stain on his kidney function and is weakening what little he has left to use. And he just doesn't get that. Because they were prescribed by a doctor."

I have Type 2 diabetes, and my doctors call me noncompliant. I refuse to take any medications, because of severe side-effects that I have experienced. Instead, I am following a very rigorous (and unusual) diet, which seems to be working better than any medications.

I would distinguish between two types of non-compliance.

There is the non-compliance as the term is used by doctors, meaning that you don't follow their orders, given after a very brief exam. Those short exams followed by one-size-fits-all prescriptions are worthless at best, and life-threatening at worst.

Then there is the non-compliance when you don't do what you know to be right, based on your own knowledge of your body. I am very compliant with my own sense of what I need to do, which is very different from what the drug-pushing doctors say.

Well, then, there's another kind of non-compliant. He takes all his pills regularly. That is the reason why he can eat whatever he wants (in his mind) and the reason why he doesn't have to exercise or test his blood......all those pills take care of him. As long as he takes his meds....he just doesn't need to do anything else. He can eat anything he wants, including that bag of chocolate followed by a bag of potato chips! He can deny that he ever has a low or a high....because he is taking those pills!

What he doesn't seem to "get" is that with a kidney function of 20% - those pills are hard on him. He could do so much just by testing, eating healthy, exercising just a little....but he's not going to change.

For me, being compliant would mean that you do everything in your own personal power (diet, exercise, test) and then you take the meds that your doctor prescribes based on your compliant behavior.

But I think when meds are prescribed because you fail to take care of yourself, then you are non-compliant.

__________________

Another post:

geez, I just want to smack him. (not really that's just an expression) And while I understand, I hate that you go through that whole thing of thinking through why he is says what he says. I wish that you could just have the peace of mind to think, "oh well, his disease is causing this, I'd better get out of the way."

but of course, so much easier said than done. I still get in the car with mine -- and realize 10 minutes into the trip that his sugar is so low he shouldn't be behind the wheel. Last night was a perfect example. 7 pm, going into the city for dinner, having a nice conversation, I mentioned that turning at the next corner might help considering the way traffic looked ahead. He ignored me and then was confused about how to get to the restaurant. It took me several minutes to realize the issue. (I know you are thinking after all these years, I should know the signs by now, but stupidly I continue to trust him!)

Anyway, I get very calm and just try to have him pull over so I can drive. But its not easy because he likes to drive in the left lane so much. But once again we made it out safe. his glucose reading was 51. but since nothing bad happened, his assessment is that I'm overblowing the situation by being angry. or when he realized the futility of that he lied and said he tested before we left the house and his glucose read at 90 something.

there just is no winning these arguments.

and we go on......

Tom's wife

by the way, I have a question for you, have you considered moving this to a site where everyone can just chat with each other as they wish? or do you know of one? clearly there are lots of people who are responding to you on this topic. but I haven't found a site that offers such a chat. it seems like you bear a burden of having to be the keeper of all of these responses. would it be easier for you if there was a more open 'forum'. if that's the right word? I'm not a very good web person, just asking. thanks.

First, I laughed about the driving incident. It is amazing to me how fast blood sugars can drop. And how stupid I can be and not recognize it. I just wonder if anyone has ever timed it? Like can they be 90 and go to 40 in 2 minutes? I swear they can! But then, getting him to test would be impossible. Driving with a low is totally scarey. I am doing more and more of the driving...because if I'm not driving, I'm praying like heck! LOL!!!

I wish there was some early warning system - a bell that went off - something that would alert me to the fact that he is heading down. I'm paying more attention to mood vs eating - how long has it been since he last ate when he starts to get grumpy. But I swear, I don't even think about it half the time. Sigh.

As for another forum....someone started one once, but it just didn't get any response. I think the problem is that you get angry "compliants" who rant and rave. Notice, I don't allow their posts here. Oh yeah, they still send me nasty little emails and I just ignore them. My philosophy is that if you haven't walked a mile in my shoes....don't try to give me advice!!!

I had an artist pal here the other day and she is diabetic. She said my descriptions of life with my hubby were interesting and she agreed that she did not always know when she was going into a low....nor could she remember what she said while in a low. That was encouraging to me.....someone who has diabetes and is open enough to admit they don't remember what happened when they went low. For the most part, the diabetics who write to me deny having lows, and get angry because I use the word "diabetics". If you haven't noticed, I sort of call a spade a spade! :o)

_________________________

My "rant" for the day. He's been home 3 days and I've mopped the floor 3 times because he spills stuff all the time. And you think that's not related to his diabetes? Of course it is!!! He has neuropathy in his hands so bad that he can't close his fingers any more than about 2" apart. He can't pick up a fork any more. And half of what he tries to pick up slips right through his fingers and onto the floor. So I mop. But it sure was nice to have 3 weeks off from the daily grind. I feel like I've re-entered "maid" status.....cleaning up the mess. Don't even bother to suggest that he mop the floor after himself! Not going to happen in this lifetime!

One more week and I'm gone traveling and teaching art for 3 weeks. I can survive anything. :o)

DW

grrrr.....hssss.......

he got home late last night after being gone 2 1/2 weeks. He drove this trip. As I am helping him unload his car at 11:45 pm....he says to me, "by the way, what did you do to break the seatbelt on the passenger's side?" I said, "what?" He said, "well, you must have done something when you were helping me load the car because it's broken."

I stood there in complete utter disbelief, not quite sure how to respond, but finally said, "Let's see, we loaded the car while it was still IN the garage.....the passenger door would have been up against the wall, so I distinctly remember putting stuff in through the driver's side of the car. I don't recall anyone opening the passenger door as you were backing out of the driveway, so I don't see how you think I did anything at all on that side of the car!"

He said, "oh".

I merely wanted to smack him from here to China but instead, had a little conversation in my head that went something like this (not a word uttered outloud)

He just drove 13 hours to get home in a single day. I'm sure he only ate at McDonald's as he drove through and sped down the road. I'm sure he didn't take his evening insulin yet. I'm sure his blood sugars are low because his last stop to eat and get gas was 4 hours ago. So just write off his stupid comments. It's not made to make you feel bad, or dumb, or stupid. He is the one who doesn't have the capacity to use logic and reasoning at the moment. I'm sure if his sugars were normal, he would not have made such an idiotic comment. Just get him inside the house and offer him something to eat. Maybe a few crackers would do the trick tonight.

Now what I do worry about is the process of aging and when I start to mutter these little conversations outloud and the person who hears them will think I've gone completely mad!

And then you all just email me and remind me it is him and his disease that really made me go mad! LOLOL!!!

________

This comment was made:

Bittersweet to report that I too see so much of my own life in this post. I no longer prioritize the marriage and feel my job now is to "endure" and do so for the sake of the children, as they say. I am very sympathetic to my DH and especially the disdain with which so many physicians treat non-compliant diabetics - as if it is EASY to stay on track - but I have my own anger as well. It is unpleasant to live with an ogre. I see that through this non-compliance and depression, my DH chooses to hate life and see the worst in it. I feel I need to send the opposite message to our children. That live is not without challenges but is worth living and loving. A support community online does help. Please do help spread the message of hope and positive energy. Even if it ends up being untrue, it is better to believe in good.

I think it is good to let the children know that life has it's ups and downs but still worth living and loving. I think it's good to point out to them (if you can) when dad is in a low and when dad is "normal".

I'm not so sure about spreading a message of hope and positive energy. I'd rather think we spread a message or reality checks and decision points. That we make concious choices every day to stay with a non-compliant diabetic. While it's good to believe in "good" - I think it's best to believe in realistic outcomes. With my husband's kidney function hovering around 20% - I can't expect miracles. I can hope for a good day once a week! If I get more than that, life is wonderful!!!

Don't think I posted this comment:

With type 1 diabetes, you can be extremely compliant but due to both beta and alpha cells destroyed by the autoimmune process, the person with diabetes experiences a virtual roller coaster of blood sugar highs and lows...many of which come out of nowhere

I have had midnight lows in which 4 juice boxes weren't enough to bring me above 40

I test my blood sugar 12 times a day, unless it is a sick day in which I test more often...and still these nasty lows can sneak up on you

Good for you for being compliant and testing so often. Like I've said before, my hubby hasn't renewed his test strips since 2001 - that should tell you just how often he tests! But I agree, it just makes sense, as neuropathy sets in and nerve endings throughout the entire body start to die, we have to remember, it's not just the nerve endings in the hands and feet that die. That's what they feel and notice first. But it's the nerve endings in the intestines, brain, heart that also die off. I read somewhere that so many diabetics die from heart failure...from nerves that don't work any more and the cause of death is heart attack or something related and never a mention of the cause of death as being diabetes. So sad that all those statistics go uncounted for. So I'm sure the autoimmune system is being destroyed as well.

But here's the kicker. Because you can go high during the night and low during the day....that can average out to a very normal A1c. What doctor ever goes anywhere when a patient has a normal A1c? Oh! They just pat you on the back and tell you you are doing terrific!!!

Soooooooo STUPID!!!

And another comment to the post "denial"

Your words do give great perspective - and I do love the diagram of the entire community in denial. The fact is that we are dealing with a suicidal person here - it's just suicide in slow motion. Denial, escape, repression, delusional attitude about some miracle solution - they are all coping mechanisms - but would be good to know if anyone has found anything that breaks the cycle. Oh, feel a low coming on in the next room - off to get the groceries! Sound familiar?

Truly, truly.....sounds all to familiar!

I have always explained to my friends that I am watching him kill himself one step (piece) at a time. It truly is the saddest thing ever and I think suicide would be much easier for me to handle. But every bag of potato chips, every bag of Dove chocolate, every big thick juicy steak coated in layers of grease, gravy....ok...enough to make me want to throw up! But for me, the worst thing is the 800+ pills that he takes 4 times a day. Ok, I am exaggerating, but you get the point! Each and every one of them puts a stain on his kidney function and is weakening what little he has left to use. And he just doesn't get that. Because they were prescribed by a doctor. Oh duh! Don't get me started down that road this morning!

Besides....we need to go out to an early lunch as he's been grousing and angry all morning - I don't think he had near enough for breakfast!

Comments

Tonight, I had 3 comments on previous posts and I thought I would post them all here. Why? Because I think it's really important to share what other spouses of non-compliant diabetics write.

Look at what I just found!!!!!!!! Thank you, so much, for starting this blog and, to each poster for sharing!!!!! I have been married to my Type 1 diabetic, who was diagnosed at the age of 19, for nearly 25 years. The marriage has had it's times of hell - that is for sure. The anger; the noncompliance; refusing to even talk basics about the disease, hiding everything he could; the affect it has had on the entire family - all very tough! Thankfully, he is more compliant than he was for the first 20 years of our marriage. What does that mean? That means that now he will test his blood when I ask him to, without being an idiot about it. Translated, he still wants to put the responsibility of following a schedule on me when he doesn't feel like doing it. A far cry from what he use to do. There use to be tons of highs and lows. We even had the department of family services involved in our life for a year or so, because he had a low while at a local fast-food chain, with our son, who was 4 at the time. The emergency room doctor was so angry with seeing him all the time, called the State on him, hoping to wake him up. It didn't; just put even more stress on me. What turned him around, for the most part? I had to have a biopsy, which frightened him significantly. The results were negative, to our relief (thank God for that!)! It gave me the opportunity to point out to him that I felt the way he had, concerning my biopsy, every time he had a low. I am thankful that he now will test his blood, when I ask, without being a jerk about it (when he chooses to sleep instead of keeping to a schedule). Of course, this means that I have to include getting up at midnight/1:00AM to get him to test his blood. I still don't always catch them, especially weekend mornings when he doesn't feel like following his regular schedule (we had one this morning). Unfortunately, he's not as pleasant with his children (who are now teenagers/early twenties) when they try to get him to test on schedule. I've had to teach them to ignore his meanness during those times - to stick with what he needs to do (basically teaching them to disrespect him - to make sure he does what he needs to do to care of himself). He's not a happy man; yelling frequently; lazy; eating whatever he wants, even with high blood pressure and cholesterol and some sort of nerve issue that appears to be affecting the left side of his body. Yep, I know he's depressed. He goes to the doctor only when he needs a prescription refill. I've had the medical community behave as though my concerns were of no value: it is my responsibility to make sure he takes care of himself; my concerns are not legitimate, etc. I've rambled enough. It is good to have a place to share with others who walk the walk.

I, too am so grateful for each post that is shared here. I don't feel so alone. I know there are others going through exactly the same thing. I agree, my hubby is more compliant now than he has ever been. I think it is a necessity. They have to be. Probably because of the pain and if they don't tell the doctors what they are/are not doing, they won't get those prescriptions refilled!

I think my husband is terribly afraid of being alone when he dies. Well, in the moments when he remembers what is going on in his body. Like when we were in the river bottom and he had that angina attack. But how soon he forgot and yes, he still has not been to see the doctor over that one.

I felt like you were describing my husband while I was reading you post and it grieves me that there is another woman suffering the same thing - yet at the same time I find comfort in it. How sad is that?

I've been married to a type 1 diabetic for nearly 30 years. Tonight he had a very bad insulin reaction I couldn't pull him out of. I had to call the paramedics. Not the first time, but usually I can take care of it myself.
It's been 30 years of hell for both of us - endless low blood sugars, poor sleep from checking on him throughout the night, not to mention the rigid life that comes with it. It's not his fault. I know that. He does work hard to maintain his blood sugar. He hates putting me in this position.
But tonight, I could take it no more. I broke down and cried for 15 minutes. I consider myself a strong person, but I don't have much strength left. I feel so guilty that I have these feelings. What do you other spouses of diabetics do?

First, is he ok? It's interesting to read that your husband seems to be compliant, yet still has the same problems. You know, crying for 15 minutes is just fine. You deserve it. It is our body's natural way of relieving itself from stress....and any time you have to call a paramedic - there's stress involved. Don't feel guilty for a second! It is perfectl natural to cry.

What do other spouses do to relieve stress? I'd venture to guess that most of us cry at some point. I lose myself in my art. I used to walk for an hour or two - however long it took for me to get rid of the stress. There was a period where I cried at the drop of a pin - I was so stressed out all of the time. We probably all find different ways at different times. But again, don't feel guilty. The body has to get rid of the stress. If you let it build up inside, then your immune system will lower itself and you are more likely to get sick.

So, we women, it is so hard for us to love people when the setting is not the way we learned it to be. I'm having trouble putting this into words, but I'll try. Most of us learned that its hard to tell your children no sometimes when they look at you with tear-stained eyes, but we do it anyway - because it is the right thing to do.

But, we never, in our wildest dreams, expected that we would be put in a position of having to show the same type of "tough love" to an adult man, whom we married, expecting it to be a sort of an "equal" relationship. And not just tough love about taking out the garbage or changing diapers. But about his life or his health.

Here is my life-changing story. A number of years back, I was getting ready for work one morning, and I received a phone call from the state police asking if I knew where my car was (not my husband - my car). It had been involved in a hit and run accident, going the wrong way on an interstate highway entrance ramp, hit a few cars, and then was driven away. Everyone assumed the driver was drunk. And they were angry! There was a pregnant woman in one of the cars. No one was hurt, but they were looking for the car and the driver -which had to be my husband at 6:30 in the morning!

You can imagine my horror! I explained that Tom is diabetic, was probably low, not drunk, and hopefully he would stop and call me. (this was in the days before cell phones!)

I'll cut to the end -- He did not lose his license nor did he go to jail, but he did lose his insurance and the accident in total cost us about $5,000 plus having to buy a new car. Together we lost about two weeks of work between court dates and doctors appointments.

To top it all off, his mother blamed me for the accident, because I didn't make sure that he tested himself before leaving the house and I didn't force him to go to counseling.

I tell you this long story, because it was then that I finally learned that I am not his mother, and I truly have no control over his disease or his actions. No matter what he does or does not discuss with the doctor (or his mother) is completely out of my control.

If his sugar dips dangerously low and we are awake, I will suggest he take some juice, or a beer, or that he test himself (because he never believes me). and then I leave him alone. If it happens in the middle of the night (as it often is), I'll try to give him some of those glucose gel things. I never give him a shot. the one time I tried, he hit me so hard I had a black and blue mark on my arm for weeks.!

As you all know, nagging and whining don't work. If he gets worse, I'll offer again. But if I can't tolerate watching him decline, I'll leave the room or leave the house. He either takes care of himself, or gets so bad, he eventually will take some juice from me, or I call 911. The emergency people know me now. Its not that I call often, but I do what I have to do. Tom absolutely hates it when I call them, so I only do it as a last resort. But you know what? He is stronger than me, and I can't force him to do anything he doesn't want to do. Even save his life.

when these events happen, I do feel like I have to be tough. but I don't think its "not caring". He put me in this situation. I often cry. Those 5 or 6 minutes waiting for the ambulance to arrive at 2 am is horrible - I can't tell you how many times I pace like a crazy person. they show up and test his sugar and its down to 30! How can he do this to his own body? much less to me?

but of course, just ask him, its never his fault.

maybe you think I'm hard-hearted, and maybe I am. I don't think so, its just that after 25 years of living with this, I'm coping the best way I can. I have my own issue and try to deal with them with as little impact on others as possible. why can't he do that also?

Heavens! you are NOT hard-hearted!!! But other than that, I don't have the answers to your questions. I can only guess. Why does he let his sugar drop to 30? Laziness? Lack of self-respect? Secret desire to die? Those are the very thoughts I seem to have when my husband goes so low. Of course, those thoughts come after I panic, freak, call 911, pace, worry, have an anxiety attacki......LOL!!!

Why can't they deal with it in a quiet, non-intrusive way? Hmmm....I think that's impossible and I think I know why. When you go low, the body's needs adrenaline to increase insulin. So (probably subliminally) the diabetic has to create a situation that forces an adrenaline rush. I've often considered getting a hammer out and just smashing a couple of his fingers!!! Well, think about it - that would definitely create an adrenaline rush, get the glucose heading up again. I think they create drama, they yell, they get angry - often not really understanding it or able to control it- as an unconcious effort to increase sugar.

I've started just to allow the argument to build. The sooner he gets insulin flowing, the sooner he will come out of his low. So within reason - I will on occassion allow him to continue down that hostile path. But more often than not, I quietly tell him he doesn't have permission to yell at me, or talk to me like that.....and then I will leave and go shopping, go to a movie, do whatever it takes to get myself out of the house, away from his "mood". Like you said, we can't fix them, cure them, heal them, make them better, change them. And I have learned that there are times to just say, "I can't live with you right now" and then walk away for a few hours or even a few days.

My MIL would blame me, too.....but I have learned over the years that as his mother, she subconsciously created a dramatic moment in their lives whenever he was going into a low. My FIL is also diabetic and she is extremely skilled at creating dramatic moments exactly when he goes into a low. It is an interesting dance to watch. She has trigeminal neuralgia and will have horrible pain the moment he starts to go low. He panics, determined to help ease her pain and you can almost see him go from a low back to a normal within about an hour......which is precisely the lengty of one of her attacks. When he is gone, she will go a full day without an attack. I'm not even sure she is conscious of the "dance" they do!

While I refuse to become such a drama queen - I've definitely considered using that tactic if I need to!

While there is an element of comfort in knowing that I am not alone in this struggle.......my heart goes out to each one of you because I truly know and understand what you are going through. Do not allow him to take an ounce away from your self esteem! This is his disease - not yours!

DW

It's in his ballpark

I know that many people do not go back and read prior post's comments and that's why I like to bring them forward - to make sure the world understands that this is a very common thing for spouses of non-compliant diabetics. Here's a post from yesterday:

I too, have a diabetic husband (type 1). He's been diagnosed since he was 19, and is now 62. His overall health is good..no neuropathy, eye, or kidney problems. He watches closely what he eats, and tests several times a day. I am thankful for this, however despite all he does, he still has insulin reactions several times a week that leave me drained and anxious. He hates my suggestions, and interventions. Like many of you say, he doesn't remember how he behaves during a reaction. When I suggest looking into an insulin pump or going to a "real" diabetes Dr., he gets angry, and this usually ends up as an argument, where I am the bad wife, and all is on my shoulders. I had no idea I was not alone in this battle! Whining doesn't help, but knowing that there are other spouses out there that might be able to help each other with solutions, moral support, and just an "I know what you're going through" is wonderful! It is very hard to feel as though you sometimes hold your mates life in your hands. I have decided dto explore every avenue I can to help him, then, when I've done that...I'll try my best to let go, and it's in his ball park.

Trust me, you are NOT alone!!! I should have kept a log of all the comments over the years just to this blog alone! We are "alone" only in the fact that the medical world does not acknowledge that this disease has a HUGE impact on the entire family. It affects how children are raised. It affects divorce rates. (I have to wonder how many spouses simply walk away quietly - my husband's ex did).

And I honestly, really do know what you are going through. No, whining won't help. Being argumentative doesn't help. OK, not really much of anything "helps". LOL! But it is sure nice to know we are not alone. It's nice to hear how other's cope and survive. It's heart breaking to hear when the spouse dies. Or becomes abusive.

My wish in all this is that the medical world would wake up, start to listen, and somehow offer help. I think I had my best period when the doctor/nurse asked my husband to track and write down his blood levels 8 times a day and then she actually took the time to chart out his highs and lows. He was conscious of the impact on his mood as I was tracking them at the same time.

And I wish someone in the medical arena would actually start to acknowledge the memory loss that occurs as blood sugar levels drop or go sky high.

All that being said, If my husband was not going to a "real" diabetes doctor, I would be beyond livid. There is simply no excuse for that. So are we back to the question here.....is he in denial? Because if he is not seeking proper medical attention, then he must be in denial on some level. And if he is, then all we can do is acknowledge that is where he is and understand that yes, it really is in his ballpark.

Letting go is impossible to do because as women, we want to nurture and heal. As men, I think the general concensus is that we want to fix and make it all well. Same thing. We all love our spouses and want them to be well, or at least be on a smooth level of care with no highs and lows. Research and information do help. But bottom line, it's their disease.....not ours....it's their ballpark, their ballgame. We can pitch the ball.....but they have to decide whether to hit a home run, bat out, bat it foul....or just drop the ball altoghere. Not much any of us can do about that!

Denial

A comment I received:

I too am in denial about the suffering we are all subject too when an angry, out-of-control diabetic person is at the center of the drama (and needs to be). I keep telling myself that he is not really like this - it is the disease that makes him this way, but after a while...what's the difference? Your thoughts and actions come to define you. I am now finding that I have to develop a shell and become and uncaring to cope. And that makes me hard on my children and myself. So here we are. If I am to apply the same idea, well them I have become just as difficult to live with as a result. Sad and incompetent is how I feel. Thank you for sharing your experience. It does help.

This is just my opinion, but I think denial can last forever. I think it is a coping mechanism. But it's not just the spouse/family of a non-compliant or out-of-control diabetic - it's everyone around them.

Think about it. Their doctor has to be in denial. They don't make them chart their sugar 8 times a day. They don't ask to see the "log". They don't tell them they have put on way too much weight since the last visit. All they seem to want to do is get the patient out of the office as fast as they can.

Their boss must be in denial. I'm sure the same ranting and raving goes on at work that goes on here. He's never been disciplined. It's just called "his mood".

The sad fact is that he is exactly like this. Whether brought on by sugar levels, or his own personality - it is who he is. Yes, the disease started it. Maybe the disease continues it. But it is who they are. "the center of the drama" - oh my, what a perfect description! LOL!!!

They do like to make everyone around them feel totally inept and incompetent, huh? Haven't quite figured that one out.

Put on a shell? Well, that's one way to put it. I prefer to say that every time he tries to put his monkey on my back, I fling it right back to him. LOL! This is his disease. This is his problem. I've said this before and I'll put it here again.....I have learned to simply tell him that he does not have permission to yell at me. He does not have permission to blame me. And when his mood gets really bad, then I run to Walmart, or the grocery or somewhere....just leave for a couple of hours. Because usually when I come home - he's past that mood.

Of course I'm copinq quite well right now because he's gone! LOL! Just read my past blogs and see how many, many times I have not coped. That's when I come here to vent.

I guess I need to write one more thing here. For the past 2 months, he has been making joking comments that he is going to quit his job and go live under a bridge. He will say that he has picked out his spot, that he's found one that has a power outlet. I want to think that he is joking, so I simply tell him he can go whenever he wants, but don't think I'll be there with you! But I wonder what is going through his mind that he has started this line of joking. He is now morbidly obese, his kidneys are at 20%.....I just wonder how long he has left and if in his mind this is his way of coping.

Yep, denial. It really is a safe place to be when things get bad.

I also know that there are 5 stages of grief and we, as spouses, need to grieve the loss of our normal life, the normalness of our spouses, etc. And I also know that we can get to step 4, fall back to 1, progress to 3, fall back to 2.....that it can take years to process the grief of loss. And that's what we are doing, so denial is a natural part of that process. We just need to work to get ourselves out of denial and on to the next step.

DW

she wrote, "I can't go on like this".....

on a comment on my last post and I will write, "yes you can!" We all stay in a diabetic relationship for some reason or other. And as long as we continue to make the choice to stay....then we have to go on like this. There isn't another option because you can't change another person - you can't change him, you can't fix him, you can't make it right....you can only change yourself.

So I have learned that until I make the decision to walk away from this, I can go on....even when I think I can't. How? We do it by finding something to occupy our time - a job, a hobby, volunteer somewhere. We do it by surrounding ourselves with a family of friends and a support system. For some of us, we blog - we write down the things that upset us, we vent, we rant, we throw a temper tantrum via the keyboard. For each of us, we simply do it one step at a time.

But I would never ever think bad of anyone who made the choice to leave. Being with a non-compliant diabetic is just about the most difficult thing on the face of the earth. My hubby is still gone, so I am getting a reprieve and this is what we do - he goes to his family, I go teach art - we give each other a break from the every day life of diabetes.

It has been 12 days since his grandmother died and she is still in the morgue. No creamation or burial yet. I am just not sure what is going on but think that probably no one can make a decision. His mother was in a car wreck today. She is 76 and probably has no need to be behind the wheel of a car. His work is laying off more people. So I am sure the stress he is enduring at the moment is the "adrenaline" that is keeping him pumped up. Which means that if he is in a constant high the whole time he is gone, he will have major crashes when he gets back home.

I will be leaving in 3 weeks for a 3 week teaching trip - so I know I can survive whatever happens when he gets home - I have an "out"!

A few good things to report: I have purged this house of anything sweet, chips, crackers, etc. All the soda is gone. It's been a very good 2 weeks here!!!

DW

Surviving 101

Send the diabetic spouse to his parents. Have him take the pets. Listen to the silence. Start to remember what it is like to be able to spend a whole entire day without living in a world of diabetes. No blood stains from shots. No flopping in bed. No noise from a CPap machine. Listen again to the silence. Renew the spirit. Revive the soul.

I have decided that I could fall in love with silence.

I am healing. I am finding new strenght. Perhaps when he comes back, I just need to go away a little more often so I can remember who I am without being the wife of a diabetic.

So much for promises.

He STILL has NOT been to see his doctor about his heart. Sigh. I need to give up. He is not going to go. He even commented the other day that all it was was a burning sensation like heartburn!

How soon he has forgotten just how scared he was, that he could barely breathe, that he could not function, that the pain was seering in his chest......

And then his grandmother died this past weekend. He is leaving tomorrow to drive 1000 miles to be with his parents. I am not going because I have business commitments here that prevent me from going.

He has no business going. Especially since he has not been to see his doctor. Every single visit to his parents results in multiple layers of drama and he certainly does not need that right now.

Nothing I can do.

My sister was here this weekend. She commented that he looks horrible and has gained so much weight. I know. And it doesn't help to have what you already know confirmed by someone who hasn't seen him in months.

Good question a reader asked recently....do the good days still outweigh the bad? Should I stay or should I leave? I just don't know.