improvement

The gout in his knee is gone. He's back to moving around. We've had a very quiet holiday so far, and it has been so nice. I'm getting some much needed rest.

I overheard him tell his dad yesterday that he is probably going to have his hip replaced. News to me! No surprise - but it would be nice if he would talk to me about stuff like this. Now....it could just be a comment that he is making to his dad to get out of making the drive to see them - and that's fine with me. But if he does get it replaced....he is either going to set up a bed on the main floor or hire a nurse - I'm not going to run up and down stairs after him like I did when he had his foot surgery!

Overall, things are going extremely well. I'm letting him take a break from "healthy eating" for 2 weeks - then I'm going to make him do better. Well, he really hasn't done too bad - but I'm just not forcing it on him right now. I noticed immediately he's back to eating a whole bag of potato chips - but he's letting me buy "lite" and they are about 1/3 the size of a bag and 1/3 the calories and fat - so still a huge improvement over where we were a few weeks ago!

DW

Gout again

2 days ago his left knee became swollen. He's pretty sure it's gout. Says it feels like someone twisting a knife under his kneecap. Ouch! Can't walk. Has been in his chair - sitting. Grumpy as can be. Well, if I had that much pain I'd be grumpy, too! Pretty sure it came as a result of a chocolate binge. Well, can't blame him - it's the holidays. But I'm not sure eating chocolate is worth the pain he is in. Thought it might be gone by now, but no such luck.

DW

sick again

I sometimes think it's a change in weather. But then I think it's just ups and downs with sugar. There are times I just don' tknow what to think, but he is getting sick more and more, so I'm going to start making notes on that as well. He thinks today it's food poisoning.....but he did have cheese on his burger at lunch. Even though it was swiss....still cheese. So he's been sick to his stomach for the last 4 hours and now he has a head cold. Again.

I wonder how much his body can take getting sick like this all the time. It puts him flat in bed. The good thing is that we have arranged for a basically stress-free rest of the year. No tree here. No parties. A small family gatheringon Christmas Eve. Shopping is all done - nothing left to do and he is off from the 23rd to the end of the year. I hope he will spend some time working on one of his hobbies. I think that would be relaxing for him.

We are still doing Weight Watchers. He hasn't lost anything, but he hasn't gained, either. So he is still down 20 pounds. I just wish he could lose at least another 20. I think it would help him so much.

Hopefully he will be better in the morning.

DW

Dear Lori....about that book.....

I have often wondered why no other wife of a diabetic has written a book to this point?

Is it because we are so lost in the grief, depression, anger of this disease? Is it because we can barely cope with everyday life....let alone the stress of trying to write about it?

I don't post every day as it would just be way too upsetting. I try to make this a diary of the major events. But to write the minute details....the gross stuff...who would believe it? who would read it?

When I started this journey, if you had given me a book about my possible path...I would not have believed it. If someone, even a doctor, had told me what I would experience when he has a low, I would have said, "yeah, right!" with that "you are insane" tone in my voice!

And my other thought is...do I want to know? Do I really, truly, want to know what is going to happen next? Yes and no! It's sort of like....do I want someone to tell me the exact moment I'm going to die? Not really? I think there are just some things about the future that most of us want to remain in denial over! LOL!

So, update. We are having a generally good period right now. Continuing to lose a pound each every couple of weeks. Eating much less and more healthy food. It sure feels good. We have "fights" over meals about 3 times a week. He wants to eat a bag of potato chips and I just tell him that he can no longer have them. And yes, he still sneaks and cheats behind my back, but it's not nearly as bad or as often. His attitude is much improved. And we are entering the holiday season without chocolate. Yeah!!! He is still wearing shoes which is a miracle in my mind. And he is now wearing socks after years and years of refusing to consider socks.

I just continue to be thankful for the baby steps.

But I'm not opposed to wriring a book. Maybe my blog will be good reference for that one day down the line!

DW

another foot infection

Started Sunday. He can barely walk once again. Hobbling around. No real reason for this one as he has been sticking to Weight Watchers pretty good. Down 21 pounds. I wonder if it could be diet coke. It's the only thing non-nutritional he's doing at the moment. Well, that and he still eats a couple of Jolly Ranchers when he starts to go low. He is also testing his blood sugar once a day. I know he needs to check it a whole lot more, but this is more than he has done in years.

Baby steps. It's all good!

DW

Lactose intolerance

Well, he has definitely developed an intolerance to milk products. He had some cheese at dinner last night and was up all night long. Of course, that kept me up. I just can't seem to get in gear today and finally gave up.

And since he's not been able to keep food down, his sugar has been going low all day.

But I do think he's better tonight, thank goodness!

I love cheese, but I will change my way of cooking just so I can sleep nights!

We are still both dieting. It's still going well. Other than the cheese.

DW

Weight Loss

We are still doing Weight Watchers. He has lost 20 pounds and I'm down 12. It is not easy and we continue to take it one meal at a time.

The good things:

1. We are only eating out one meal a week
2. He has cut way back on the potato chips as he has to count them.
3. I can tell in his face that he is losing.
4. I think he's only had a couple of candy bars a week. At least it's not a bag a day. That I know of. :o)

I'm sure that this week it will just be a pound or so, but hopefully it will still be coming off.

He doesn't understand this is a change in lifestyle and still thinks it's just temporary. But the good thing is that he is a little more willing to try something new. We are trying 2 new recipes each week. Guarantees a bit of variety. He is not eating enough fresh fruit and veggies, but has started on celery and carrot trays this week. Still no exercise.

Yesterday, he missed a step coming down the stairs and landed on his arm. Has had it in a splint and has barely moved. But tonight the swelling has started to subside, so hopefully he can function a little more tomorrow.

He still needs to lose 30 pounds as a minimum. I need to lose another 20. So I'm sticking with this and my excuse is that he either has to eat what I fix, or fix something for himself. So that may just be a way of life from here on out! :o)

DW

To the spouses of those with diabetes.....(ATTENTION doctors & therapists)

It is time that we speak out! I receive so many comments and emails from spouses....so I wanted to start a thread where you can post. I plan to print this out and take it to the diabetic counselor. We need to get the word out to the professional field. So feel free to post your thoughts here!!!

1. It is NOT "his" disease. It has a direct impact on ME and the rest of his family. His parents, his siblings, his children. It has an impact on his co-workers. PLEASE stop ignoring what this disease and the drugs you give him do to the rest of us.
a. When he is low AND when he is high, he can get verbally abusive.
1) He will NOT remember this at all when he is back to normal.
b. When he is low, he simply cannot function. As this disease progresses, he becomes less aware of when he is in a low. He needs constant supervision. That is MY life.
c. When he is low or high, he is angry, irritated, agitated, can be physically abusive, but definitely verbally abusive.

2. I did not know this when I married him.
a. He hid it from me
b. He may not have known how bad it was.
c. He did not and does not take care of himself, although he probably tells you, the doctor, that he does.
d. He does not test his blood sugar levels
e. He does not take his insulin at the same time every day.
f. He does not follow your recommended diet/eating plan. He eats just about whatever he wants, whenever he wants.

3. I have learned that:
a. when he starts to go low....or to prevent a low, I need to create some kind of drama/crisis.
1) It needs to be critical enough to pump adreniline in him to release insulin to get him heading to normal again
2) It needs to be serious enough that the impact on him is immediate
3) I may not even know that I have developed a critical "condition" that can generate panic in him when I have an attack
b. a huge fight with him will snap him from a low to normal
c. a "crisis" in my life will level out his sugars
d. after time, this becomes subliminal behavior and I'm not even aware of the "dance" we do to get him normal

4. I know that his children
a. believe their father was an abusive man
b. do not understand that he has no memory of yelling at them when he was in a high/low
c. spent their entire childhood in an abusive home
d. will most likely pass that on to their children, not realizing it was health induced, not who their father is
3. are incapable of loving him because of this

5. I have figured out that
a. his father has diabetes and he was raised the same way
b. that when his father goes low, it causes him to panic which will bring him out of a low and back to normal
c. that when he goes into a low, his father will panic and that will bring his father out of a low
d. that his mother has developed a "chronic medical condition" that causes her severe pain at any moment
1) when she senses either of them might be going low, her condition kicks in, she starts to scream in pain, they both panic and their lows head back to normal
2) that she is completely unaware of the timing of her "attacks" - it truly has become subliminal
3) that this "dance" is amazing to watch now that I have figured it out
4) that I refuse to acquire any chronic medical problems as I refuse to do this dance

6. I have informed him that he does not have the right to yell at me or be mean to me even when he is in a low
a. The problem is that when he goes low, he can't even remember how to unzip a suitcase, let alone be nice to me.
b. I have moved to my own bedroom because the drugs make him restless at night
c. Even though I am retired, I still work so I can have reasons to leave the house when I need to "get away" from this.

7. I have considered leaving him, but I stay for the times when he is normal, when I get a glimpse of the man that I love.

8. Attention professionals:
a. Explain to this man exactly what is happening to his body.
b. Do not beat around the bush, sugarcoat, or try to be nice to him.
1). He eats 8 chocolate bars a day because you told him a carb is a carb.
2). He truly believes that he can do whatever he wants as long as he takes the pills you give him.
3). We understand HMOs tell you that you have to give a patient "hope". Stick to your hipocratic oath. Tell him the truth.
c. When he says he is eating healthy, do not believe him for one second.
d. When he says he is testing 4 times a day, ask to see the log.
1) why would you think the log is accurate? If he will lie to you, he will write down any number on the log
2) can't you see there are no pricks on his fingers/arms?
e. Why on earth do you assume that he is telling you the truth?
f. We understand patient confidentiality. But make an appointment to see his wife. SERIOUSLY. If you really want to know how your patient is doing, talk to the spouse, the children, someone who lives with him day in and day out.
g. STOP giving false hope. If this is a heriditary condition, then tell his children that they will most likely pass it on to their children. INFORM and EDUCATE - don't just medicate!!!
h. And about all those drugs - send him to an endocrinologist. Have one single SPECIALIST, not a FP, in charge of his overall care. Don't experiment on him. If you do, call the spouse first so she knows what to anticipate.
i. MOST IMPORTANT - and A1c is NOT a true indicator of overall blood sugar. If he is having lows at 10 am and highs at 8 pm, he can still have a normal A1c. You seriously need to be talking to someone who lives with him and ask the question, "do you tend to get into an argument the same time every day?"
j. NEVER EVER assume that a diabetic is being honest with you. Even when they tell you they are being compliant. Even when they show you logs and journals. A non-compliant diabetic is the best liar in the world.
k. STOP and THINK!!! You have a non-compliant diabetic sitting across from you who is now the world's best liar. His A1c is normal. He has given you false charts and logs showing he tests 4+ times a day and he eats healthy. LOOK at his medical record. LOOK at the number of times he has been to see you.....or how little he has been to see you. Get permission t speak to his spouse. If he will not grant that, KNOW there is a problem!!! (Can I say that any louder? Are you listening????)
1). My husband has probably said to you that he is single.
2). He probably removes his wedding ring before he comes into your office.
3). But I have spoken to the diabetic nurse, so ask her if his spouse has ever been in.
a) I have separate insurance thru the same HMO, so our records are separate.
4). Why would my husband want you to talk to me? He knows I will tell you the truth! Remember, he is a liar!!
l. He has neuropathy. He has had foot surgery. He will tell you he can no longer feel with his fingers. His feet are always ice cold. His nerve endings are dying off. YET....you refuse to tell him that all the other nerve endings in his body are dying off as well.
1). he has constant diarrhea, vomiting and I know it is the nerve endings in his stomach dying off. Why won't you tell him that? He won't believe me, but he might believe you!
2). he has constant backaches. Nerve ending damage?
3). His sciatic nerve was killing him last week. I looked it up, yep, nerves dying off. If he went to see you, would you tell him that? Do you KNOW that it is a common problem with diabetes? How could you - you think his diabetes is under control!
4). So his last doctor told him the lumps on his feet were his Scottish ancestry. You told him it was gout. But did you tell him gout is tied to diabetes? Did you ever explain to him that everything going on in his body could be a side effect of his diabetes? Do you tell him what to do for it or just give him another pill?
m. Have you ever spoken with me? NO!!! So, how do you presume to think you care for him? Yep, I got ya! Patient confidentiality. If you really care for this man, ask him to sign a release to speak to me. If I leave him, who will be here to call 911 the next time he slips into a coma? It is the WHOLE man you need to be treating and that WHOLE man includes his family.
n. And when you do talk to the spouse, or to him, and they are young, tell them to consider NOT having children. No one has the right to bring a child into an abusive home. And if he goes high/low - trust me, it IS an abusive home. And even if he doesn't go high/low, there is no guarantee that he won't at some future point and time.
1). But then here's the real quandry. If he doesn't remember what he says or does when he goes high/low, he will deny that he is abusive. If you don't talk to his spouse/children, how will you ever know?

OK, spouses, what have I left out?

Simply go to HIS health care provder's website, find the doctor's name, get and email address, copy and paste this into it and send it to his doctor. If enough doctor's and diabetes nurses read this, perhaps the lightbulb will go on somewhere out there and the world will start to see that his disease has a huge impact on everyone else. Diabetes abuse. I think it's way more widespread than anyone is willing to admit!

Inform & educate, don't just medicate......let's make that the slogan for spouses of diabetics everywhere!!!

DW

when he's down -

he's down. And when it's over, he doesn't remember a thing about it and is happy as can be, wondering why I'm exhausted! LOLOL! I HAVE to laugh or I'd just sit here and cry. Today was 180 from 2 days ago. He's well, happy, back working, joking. And asking me why I'm so tired. He doesn't even remember that I did 30 flights of stairs running up and down getting things for him Nor does he remember that I made him go downstairs when he got hungry.

Nice that things are back to "normal" and I think I'll be recovered by tomorrow.

DW

Why?

He is sick today. In bed all day long. No fever, but had cold chills and hot sweats. Couldn't move. When he tried to get up, his head was pounding. Didn't eat a thing.

but he had no problem calling me on my cell phone asking me to come upstairs. I think I did the stairs 30 times today. The last time, he wanted a muffin. I told him, no, sorry, you need to come downstairs to get it, I'm not doing stairs again today.

So he is downstairs, flat on the sofa, asking me to get him this and that.

I finally told him, no more. I need to sit on the heating pad as my back is killing me.

I have told him a thousand times we need to sell this place and move into a ranch. He just ignores me. So as of today, no more stairs, I don't care how sick he is. My back just trumped his diabetes! LOL!

Yet another day that nothing got done, nothing got fixed around here. And I know it's not going to get any better or any easier.

And I also know I'm tired and grumpy and crabby tonight!

Tomorrow will be better. I know it will!

Weight loss

Today is our "weigh in day". We are doing weight watchers online as our health insurance provider allows a substantial discount. I am so pleased! I lost 8 pounds and he lost 11. I know it is water weight and I understand that it will slow to 2 to 2.5 pounds per week if we add exercise and stick to the plan.

So, this morning, I have added 30 minutes of exercise and he has agreed to try this evening. Even if he just sits on the bowflex and stretches his upper body it will be more than he has done in 5 years.

Just pleased that he is giving this a solid try. No hope for anything more than just sticking to it today. That's my goal - one da at a time.

:o)

DW

Sciatic Nerve

His pain is so bad he called the doc to try and get in to see someone again today. Second visit in under a week. And he has an extremely high pain tolerance level.

Has been on the sofa or in bed. Can't walk hardly at all. Severe pain.

But he is still on the diet plan - doing fine with that.

DW

Dieting

Weight Watchers may not be the diet of choice for a diabetic, but it is the diet that hubby said he thought he could do. Only time will tell. This is the end of day 3 and he has stuck with it. He is starting to comprehend the concept of choices. He is asking me how many points items have. And I'm gently reminding him that he can eat anything he wants, but he has to count it.

So he has now been 3 whole days and has opted not to eat potato chips. That's a minor miracle!

I showed him that baked tortilla chips are less points than regular chips. He is catching on that whole wheat bread has less points than white bread and he is picking whole wheat tortillas over white bread.

He is still not checking his blood sugars. And he is sitting on a heating pad almost all day long because of his sciatic nerve.

He's gone 3 days with no soda. He's only had 1 chocolate bar that I know of and when I charged him 5 points for it and explained the glucose tablets would be 1 pt each - he totally got that!

He currently weighs 250 # and according to WW, he could lose up to 12 pounds the first week. I think that would motivate him completely. 4 more days and he can weigh himself. He just has to get the weight off. And so do I. He needs to lose 50# and I need to take off 30, so I estimate it will take us 6 months at a minimum. A full year at best.

Anyone else try WW as a diabetic? I'd be curious to know what the results are.

back pain and things to give up.

He went to the doc fo rhis back and was told that it is his sciatic nerve and he needs to stay off his feet until it heals.

So I decided to do some research. Sciatic NERVE = any nerve = nerve ending damage as in neuropathy?

Sure enough. I think this is going to be an ongoing problem with him. Neuropathy in his sciatic nerve. It even has a name: Sciatica. So from past research on nerve ending damage - he should have severe pain for the next 2 years and then the feelings will die and he won't have the pain. Wonder if it works the same with the sciatic nerve? Will he lose all sense of felling as in his feet?

Time to look into getting a wheelchair?

I do believe he is starting to see the end results of this disease. When we were on the cruise, he had his first ever pedicure and loved it. So I talked him into signing up for a seaweed wrap and flotation massage. It was highly recommended for people with arthritis and I just thought it might make him feel better.

When he got to the SPA and they did their questionnaire with him, they told him he could not get the treatment. There was a risk of the lotions they use getting into a needle injection spot and causing an infection. A few hours later, he actually admitted being very depressed over everything that he can't do because he has diabetes.

So we had a good talk at that point. I simply reminded him that he has 2 choices. He can continue to ignore his sugar levels and endure the progression of this disease and give up more and more.....or he can try to maintain his current status by watching his sugar levels, dieting, and exercising. That's when he agreed to diet and watch his sugar levels.

The sad thing is that was a week ago and although he has been on our diet for 2 days now, he is just not willing to test his sugar even once a day.

So, yesterday, while at the grocery store, he had a low. He grabbed a bottle of fruit juice and downed that, then a hershey's chocolate bar and I was starting to wonder if he was going to make it out the door or not. He had taken his morning insulin and had not had a single thing to eat. So I asked him about that. Why would he not eat? And he said he just didn't feel like it. Once again I simply reminded him that if he doesn't take care of himself, all I can do is call 911 when he passes out.

Why doesn't he carry glucose tabs with him? And don't tell me to carry them for him - it's not my disease!!!!!

He said to me last night, "You should just leave me" and for the first time ever, I replied, "Well, I know it's an option that I have, but I'm not leaving yet."

He did not reply. I think I shocked him! I'm hoping he will think about what I said. I truly am not even considering leaving him, but knowing that it is an option is good mental health insurance for me.

DW

Doing well

Just keeping my blog up to date here. We just got home from a 10 day vacation and it was nearly perfect. About 3 days ago, his back started hurting him extremely bad and he has a call in to the doctor today. And on the first day of our trip, I messed up. I totally missed a sugar low. He was trying to put a luggage strap on his suitcase and could not get it to fasten. I was so upset with him and couldn't understand why on earth he couldn't do such a simple task. And then it hit me he was having a low. Got him breakfast and he was fine.

Amazing to me when things are going smooth and I don't think about diabetes every second of my life, then when he does have a low, I don't recognize it. And I know he didn't even know it was happening.

He has agreed to diet. Starts tomorrow. I just pray he can stick to it. He's gained 30 pounds this past year. He can't really walk, but he can do the stationary bike and that's a place to start.

DW

No news is good news?

I think his meds are regulated finally. His feet are better than they have been in quite some time. We are going on a cruise in a couple of weeks. I'm hopeful it will be fun! Life is good for the moment! Just posting an update!

DW

Things are going well.

So there's not much for me to write about. Life is in a holding pattern. His feet are still horrible with new open sores all the time. But they do heal, just new ones form. He still has bouts with sulpher burps followed by vomiting and diarrhea, but swears it's an intolerance to milk, so he's started drinking soy milk. And given up cheese.

His attitude seems to be a whole lot better. And for that, I'm ever so grateful. Hopefully the change in meds is all good for the present and we can enjoy life together.

DW - smiling again

Plumber's wife wrote:

I am a wife of a diabetic, we have been married for two years. He's a plumber and allows himself to get too busy to check as often as he should.

I really need help. He's on various meds besides the diabetic side effects that are beginning to make me feel that I am just a roommate, housekeeper, nursemaid. I have been giving 100% in the relationship but due to his fatigue, I grow more and more empty.

Last night for instance, my son had a football practice, DH had a side plumbing job and if I hadn't called at 7pm, he wouldn't have made it home due to a diabetic low - he was at 43. He doesn't know anymore that it is going low. He has reached the thresh-hold.

I am at wits end. I want to love him "wide open" but the feeling of insecurity lately has been overwhelming. I don't know from one day to another if God will bring him home.

And I do feel so bad for you. I'm obviously not a therapist and can't really give advice....I just share my life experiences here for other's to read.....and to help me keep my sanity! So I'll say it again.....writing has been very good therapy for me. But I have also sought out professional advice on many of the issues I'm dealing with....and I'm getting ready to do it again.

I've been gone for 3 weeks. I'll be home tomorrow. Hubby had another episode of sulpher burps, vomiting and diarrhea last week. He still thinks it's lactose intolerance yet the labs show it's kidney failure. And I need help dealing with this. I need a professional opinion on what to say to him....how to help him comprehend that yes, his labs can be good on Thursday and bad on Friday. He seems to "get it" that his labs can be horrible on Friday (15% kidney function) and good again on Monday (26%), but he just can't seem to comprehend that they could possibly be good on Thursday and bad by Friday. And I just want to scream and pull my hair out!

So I'm going to call the counseling department this week and schedule an appointment.

Which will most likely end up making me want to pull my hair out even more.

But when I get to my wit's end....I seek help. I, too, went through the phase of feeling like a roommate, house keeper, maid, chauffer.....and I still bounce back once in awhile to those thoughts. In fact, I do think it's something I work on constantly....trying not to allow him to make me have those feelings. If he won't take care of himself....then you can't take care of him either. We just can't change these grown adult men. We can't turn them into someone that they are not.

But we can seek advice and help for how to live with them, how to cope with their inability or unwillingness to change, how to make healthy decisions for us. And then we constantly make the choice...do we stay...do we leave?

Or just take long vacation breaks! I've been gone 3 weeks, teaching art classes, 1000 miles away. My sister went with me. We drove. And it has just been a wonderful time away. She and I talked forever while in the car, in the mornings, late at night. It has been so thearupitic. And guess what? He has survived my absence. And if he can take care of everything while I'm gone....then he can continue to handle it when I come home. I think I'm learning little by little that I don't have to step into the role of nurse, maid, chauffer.....that I can just be the woman I am meant to be....and let him take care of himself.

We'll just have to see how it all works out when I get home tomorrow!

DW

a good week!

I've been gone 2 days and no crisis! He said he is feeling well. He had labs done on Wed, so I asked if he had the results and he said no. I'm sure he just doesn't want me to know what they are. But that's fine. I'm leaving tomorrow and will be gone til the middle of September, traveling, teaching art classes, visiting friends. My sis is going with me. Will be a great road trip!

DW

Sulpher burps

So, he has decided that it's because he has suddenly become lactose intolerante. I'm pretty sure it's all tied to kidney failure. He had another episode of them yesterday, but no vomiting, and he seems to be past them for now.

However, his headaches seem to be almost every day. And severe enough to put him in bed. But will he call his doctor? No!

I'm off to visit mom this weekend. I've already informed my neighbor that I'll be gone for 4 weeks starting next Tuesday. She said that she can come check on him any time I need. So all is well and I'm getting a wonderful month off with my sister! Can hardly wait!

DW

Weekend update

It's almost a pattern now. Every time I plan to leave, something happens to him. I went to visit my sis yesterday. 2 1/2 hours away and decided to spend the night. He woke up with a severe backache, so bad, he called his doctor and they had him in for blood tests.

Rather than spending 2 nights, I only spent 1 night and am back home.....and he is back to being just fine.

Logging all of this really helps me see the pattern.

I'm off next weekend, Sat & Sun, to demo art products at a show a couple of hours away, so I'll spend the night there. Shall we bet that something happens to him again next Friday? Almost certain.

The doc did not call back with labs today, so I'm sure they are fine and they will call him on Monday. The area of his pain was right at his kidneys.

But I'm feeling rested. Even a 24 hour break is great!

DW

Back to normal, so to speak

The acute renal failure episode is behind us. Kidneys are back functioning at 26%. His swelling has gone down. But he is having lots of migraine headaches and severe backaches. Tonight he was limping while he was walking. But all-in-all, things are as normal as they can be.

I've been busy with my art. Preparing to teach 44 classes back at the store that is about 1000 miles from here. This time I'm driving and my sis is traveling with me. A girl's road trip! Should be fun! We will be gone 4 weeks. I'm sure something major will happen to hubby, but I'm planning on having a fun trip!

DW

Does he or doesn't he....

want me to know the truth? I am in a rather jovial mood tonight and it's a darn good thing! We had this big blow up last night and I told him I don't want to hear another word about his diabetes.

So he left the doctor's papers on the kitchen counter. Nothing else. Just that one piece of paper. Out in the open. Of course I read it! LOLOL!

Diagnosis "ACUTE RENAL FAILURE" - primary

Are we surprised? Not really!

BP was 90/60
Pulse 90
and the orders for all the labs they were doing that day.

And of course, it's reversable at this point, so for some reason, it's just another day in the life of us at the moment.

They want him back in for more labs tomorrow.

DW

Feeling so alone

Do you ever have that feeling? I'm there tonight. And even though I know in my head that I'm not alone, I'm having that feeling tonight. Hubby went back to the doctor's yesterday and they ran a whole battery of tests. I went to spend the night at my mom's. Came home and we went out to dinner. While at dinner, he started to talk about yesterday's office visit. I asked him when he has to go back and he said he was to call his doctor tomorrow to see if he should restart his meds.

So naturally, I asked him which meds he stopped and he didn't know their names. So I asked him what the meds were for and he said they were both diuretics. I asked him why he was taking 2 diuretics, did they have another purpose and he just blew up at me. Right there in the restaurant. And I am so tired of this type of behavior that I looked at him and I said, "Fine. I will NEVER ask you anything about your medical condition again. But do not EVER ask me to drive you to he doctor's office or to go with you." And he said, "Well you asked me 3 times what the meds were, once is enough." And I said, "No, once is not enough when you cannot tell me what the med is for., If you asked me you know good and well that I would tell you the exact name of the drug and exactly what it is for and exactly why I am taking it." He looked at me and he said, "you are so right." And we have not said a word to each other since.

I know that he treats me like an employee. He only tells me what he wants me to know. But I have also witnessed that is exactly how he treats his doctors. And he does not hesitate to lie point blank to them, so of course, that's why he doesn't want me in the doctor's office with him.

Yet, when he is scared like he was on Friday, he wants me right there taking him, waiting with him, bringing him home, comforting with hin and listening to what he wants to tell me about the office visit.

Something snapped in me tonight. I am no longer willing to be a partial participant in this journey. Either I am not going to have anything to do with his disease at all - or he is going to turn a corner and involve me 100%. So for now, I will continue to write what I see in him, the changes that I observe and what his behavior is like, but I am not going to discuss it with him, ask him a question, anything. I am tired of how he treats me so I'm stepping out of this part of his life.

Which makes me feel alone.

We'll see how long he wants to travel this road all by himself. It will be interesting for sure.

DW

more problems

Well, he has been vomiting and having diarrhea and sulfur burps since Sunday. Took him to the doctor today. No, he did not want me to go in with him (soooo frustrating). His Creatinine is at 3.3, Potassium up to 4. His sugar was at 65 when he got there. The doc told him to go eat something while the labs were being processed, when we got back, sugar was at 126. And there are white blood cells in his urine. So an infection somewhere?

His GFR is at 21 today, Stage 4.

and he is still in DENIAL!!!

Telling me this is a virus.

Sigh.

They started him on even more meds and an antibiotic. If he vomits again, he is supposed to go to ER.

I think I need to throw up just thinking about all this.

DW

Pam said......

Thank you so much for what you do and write. My dad did nothing for his diabetes until it was too late. I had to deal with him as a child/adult and now I deal with my husband who has had type 2 for 4 years. My Dad recently past away, and now I face what you do in my own husband even more. Reading your blog has helped me to see that I am not the only one who had trouble dealing/ being a caregiver. It has even made me smile! Keep it up!

Well Pam, I write for my sanity. It is my release. My escape. My journal of this journey. My report to his kids when he is dead and they want to know why I didn't do more to help him live. It's a record of our lives from the perspective of living with this disease.

You are not alone. Oh me, I used to feel so completely alone until I started this blog. About 3 years ago, I truly thought it was all me. Now I know it's not. And I know there are many other spouses of non-compliant diabetics out there. There is strength in numbers. That's for sure.

Today was a fairly good day. I think he is done with this latest bout of diahrrea, but I swear, his poor feet look worse than ever. I don't know how he can stand on them. But he manages. He devoured another whole bag of tootsie rolls yesterday and today I saw him with a bag of potato chips. I really wonder how long he can continue this eating pattern. He definitely put on more weight while I was gone. Once again, it's his life and I know I can't change him. But watching him do this to himself is so hard.

DW

Nothing to do with diabetes (I think) but GRRRrrrrr......

I've been gone for 10 days and you'd think I'd left a 10 year old home alone! EVERYTHING is a mess! And he didn't do any of the things he said he would do. ATV is still sitting on the trailer in the drive and our HOA has a 3 day limit. Well, so much for that rule! LOL! Kitchen counters are a complete filthy mess. I smell dog pee in his room. Thank goodness that's the only place I smell it and I just closed the door today. I need to finish moving the rest of my stuff to the other bedroom so there's no reason for me to enter his stinky domain!

It's so sad that all I can do is laugh. I've been up for 3 hours cleaning the main level, laundry is going, trash is out. He said that 2 days ago he was sick with vomiting and diahrrea. So I asked him what he ate. He said he scrambled some eggs. I looked at the expiration date on them - July 18. I can't believe that he can't even read the date and then it hit me - I wonder if he can SEE the date to read it???? I guess next time I leave I will toss out anything that will expire while I am gone. How sad is that?

And of course, he dumped a soda (not empty) into the trash in the office and when I dumped that into the big bag to go out, the soda went all over the floor and I had to mop it up. I swear, I spin my wheels just cleaning up after the man.

No wonder I enjoy my travels so much. I'm a guest instructor and get treated like a "queen" - I don't have to even think about him, no one to run errands for or clean up after - it's actually pretty nice. But then again, that's what caregiver respite is all about. Getting away, getting a break, resting, enjoying a moment of life.

I've agreed to do this all again, for 2 weeks, so it won't be long and I'll be on the road again. In the meantime, I don't have the time to worry about him or deal with him as I have to be making up class samples and then making class kits for the next round of classes.

And I even came home with surplus spending money (I made more than I spent!) So it was a good break and I suppose I will just put a smile on my face and continue on with life.

But no wonder so many spouses and partners of diabetics just walk out on them. No wonder his first wife left while he was gone. I truly do understand and would never fault anyone for leaving. For now, I will continue to stay, just increase the frequency of my trips away. I think it will work. I just need to get past the frustration of the mess I face when I come home.

And then I have to ask myself - can he even see the mess? Does he know what a trail he leaves behind? Can he smell the puppy pee? I don't really want to know the answer, for now, I'll just ponder the quesiton. But if diabetes kills the nerve endings in the fingers and toes, I'll bet money it kills the nerve endings in the nose just as much.

Well no wonder he can't hear me half the time - the nerve endings in his ears are gone!!! LOLOL!

OK, ya gotta laugh - else you will cry.

DW

My R&R

Well, just one more day and then I head back home. This trip has been just exceptionally wonderful. I've taught 150 students in 23 classes in the past 8 days. I've made wonderful new lifetime friends, stayed with new art pals, and just been over in the left side of my brain for the last 8 days. Tomorrow = lunch with musical pals. What fun!!!

Hubby has called 2-3 times every day and I know he knows I'm having just a little too much fun! LOL!

Last night was strange and I wanted to write about it. I didn't have a late night class and my friend I'm staying with offered to cook dinner. I think I got back to the house around 8 pm and her husband was already 2 sheets to the wind from drinking beer, so we decided to join in and poured some red wine. I had 2 glasses - which happens to be 1 glass over my limit! The 3 of us were sitting at the dining table, eating and laughing and her husband was just so much fun. He was trying to convince me that I should move here and just drink and party all the time. Now, I know that's not a possible lifestyle, but for the first time in a very long time, I wanted to party. I wanted to go dancing, to sing, to laugh and giggle, to tell wild stories, to flirt.....

whoa! Back up! I wanted to "flirt"???? What a long lost feeling! And it hit me - I have been so busy worrying about my husband's diabetes, what is happening to him, what might happen next - that I have completely let go of that fun girl I used to be. But the question is - how do you find her again? How do you get her back? How do I laugh more and smile more when I get back home and get back into my daily routine of caring for him?

Well, the store has invited me to come back out in just another 4 weeks and I said YES!!! So I have just a few days to create new class samples and get my act together. I don't think there's going to be a moment to worry about him when I get home. Maybe this is a good thing!

Another break from "real" life!

Just wanted to post that I'm back visiting my girlfriends and having a 10 day break, teaching creative classes, and having a blast. This trip, the place I teach at paid my airfare, are putting me up and providing me a car to drive, so absolutely no expense on my part - but I'm teaching 23 classes in 8 days, so it's "work"! LOL! (Well, if you can call this work!)

At least I'm getting a break, jumping over in the the left side of my brain, and for the most part, completely and totally escaping from real life.

Went to the opening of Mamma Mia with 14 women - now that was a hoot! And went to a musical that another friend is producing. So it's been a fun trip so far!

Hubby keeps trying to call me, but can't get me when he "needs" me as I'm just not answering the phone in the middle of a class, so I think this is really good for him! I've chatted with him about once a day and he seems to be doing just fine. The store where I'm doing classes is already planning to host me again in 6 weeks, so I'm thinking this could be my caregiver respite on an ongoing basis. I'll just have to work hard at making that work for me!

DW

New foot problems

I continue to be amazed at some aspects of this "journey". This week, his right foot has swollen up something terrible. In the area just above the toes. And the top of the skin looks like it would if you got a floor burn. You can almost see red blood through the skin, an area about 2" in diameter. I asked him what happened and he said, nothing, it just showed up.

So, of course, he can't wear shoes and his sandals hurt his feet and I know it's really hard for him to walk on the bottoms of his feet barefoot. Sigh.

He also had a migraine headache that lasted about 5 days. It's gone now, but he was pretty much flat on the sofa the entire time.

7:15 on Friday night and he's gone off to bed. Pretty sad.

DW

The amazing body

He is sleeping on the sofa right now. Snoring like all get out. The interesting thing is that his feet will go through spasms of severe shaking when he stops breathing due to his sleep apnea. It's like his feet shake to alert him that he needs to breathe. I think this is just an amazing pattern and think the bod is incredible.

Looking at his feet, the carcot and gout are just as bad as ever, but no open sores, so much to be thankful for.

He was awake most of last night with a severe migraine headache which has stayed with him almost all day. He didn't eat anything til 3:00 pm. And he's been sleeping since 4 pm. (It's 6:30 now). I'm oping when he wakes up the headache will be gone.

I really should get the video camera out and shoot his shaking foot, his snoring, his sleep apnea. Problem is by the time I found the camera, he'll be awake.

DW

A new day -

I have no idea what that was, but I woke up this morning and I'm perfectly OK. Wonder if it was an allergic reaction of some kind. I seriously thought I was going to have to go to ER yesterday morning because I just could not breathe. Last night I just hurt so bad in my chest, just like pneumonia. But today - I'd swear I never had anything wrong. Just amazing.

So, can you have an allergic reaction to a non-compliant spouse? LOLOLOL!!!!

OK - you gotta have some humor in this! :O)

And he is so much better today. Like last night never happened. We're back working on re-doing his office. More cables. I swear, can a computer geek have too many cables? NOT!!! But it is all starting to come together and it will be very nice. He finally has all his computer books and software in one place, the printers are all working finally (we had a problem with the network and 2 printers had been non-functioning for months. So progress! Yeah!

It's been a good day! Vacation is almost over, tomorrow he goes back to work.

DW

I'm so sick....

Not sure, but it feels like the pneumonia is back. Sigh. So we came home early and I was just sitting on the sofa, resting, had the heating pad on. Had been resting for a couple of hours and picked up my laptop, and started answering emails. He came downstairs and wanted to know if I wanted to go to Burger King or McDonald's with him to get something. I said, "let me finish this email first" and kept typing. He paces the kitchen and says again, "are you ready"? I said, "no, just let me finish". He got mad and walked out the door. Got himself dinner. Nothing for me.

I find it so amazing - I'm sick and he can't wait 2 minutes (ok, it had probably been less than that) for me to finish and email, close the top of my laptop and get untangled from my cords. And in all seriousness, I had finished the email, put my hand up to close the laptop when he walked out the door. I just sat there in shock. That was 4 hours ago. He hasn't said a word to me since. He came home and went upstairs to the bedroom. And I don't even feel well enough to care. I fixed a cheese sandwich half an hour ago.

He's off again tomorrow. I may have to go shopping all day long. I keep saying that I love him and I'm going to stay. Tonight I wonder why? What on earth is wrong with me that I put up with this? I'm the one who is sick, trying to divert pneumonia again. Problem is, I'm too sick to care, just wanted to write this note to myself.

denial vs escape

Anonymous wrote:

I can say this since I am a woman type-two diabetic.....I tend to lose myself in movies like your husband does in order to escape from a life which has become a nightmare devoid of any happiness or real hope for the future.

so here's my next question. Is this "escape" or is it denial? Because I see it as a form of denial. He loses himself in movies and does not deal with such things as testing, eating right, etc.

And how different is escape from denial? Are they the same thing or are they different?

Escape means to break loose from confinement, to avoid a serious or unwanted outcome, to succeed in avoiding

Denial is the act of refusing to comply, asserting something alleged is not true

Not much difference at all.

My husband immerses himself in horror movies, sci fi, etc. I truly believe it allows him to escape "real" life so that he can continue to live in his denial of his disease.

Today, I faced it square in the face. He has said that he has put on 25 -30 pounds this past year. We have a Polaris 2-up ATV. He has put on so much weight, that although his stomach still starts where it did last year, right behind the handles, the rest of him protrudes at least 6 inches more towards me. He was literally squeezing my legs and thighs into the real handle bars. I didn't figure this out until over half way through our ride and I just wanted to cry out of sadness. The ATV did not change shape or size, and I'm wearing the very same jeans I wore last summer. But my legs were totally pinned due to his girth. Truly sad when you have to face this head on.

It will probably be my last ATV ride because my left hip and thigh are totally black and blue tonight. Each time we hit a bump, the weight of his body jammed my leg into the corner of the ATV sticking out. I did not enjoy the ride at all due to the pain. I'm sitting on a heating pad, hoping it will just resolve itself.

I'm going to guess he has put on between 30 - 50 pounds this past year. I know that his waist is now 42". This is a large man. And I think I grieved somewhat today the loss of the fun of riding on an ATV.

I thought we were going to die!

Pulling an ATV on a trailer over a freeway and he started to pull out into the left lane to pass the slow poke in front of us and didn't see the truck coming up on his left. Nearly lost control pulling too far back to the right.

His reflexes are definitely slowing down and I wonder if his perifial vision is failing him? I saw the truck trying to pass us from the passenger side.

OK, all I can do is just keep praying. Fortunately, today, we are safely at our destination. I'm almost afraid to go out on the ATV with him tomorrow and no, he won't let me drive! Definitely a "guy" thing! LOL!

Vacation time

He slept til 11:30!!! Well, I guess he's on vacation - but I did find myself checking on him just to make sure he was OK! It's worse than having a baby! LOL!

We had a very stress free day. Actually quite normal and fun. He has been on a modified atkins for 2 days now. No, he refuses to test his blood sugar levels, but I'm keeping an eye out for signs of lows.

He is having trouble with his left eye. Note, he has had cornea transplants and wears 2 pairs of contacts, hard over soft. So today, he was not able to wear the contacts in the left eye. He asked me to drive him to a get together with his staff, and I did. It was a nice outing. I'm hoping the weekend will remain the same way!

His vacation ends next Tuesday. We're planning on riding the ATV this weeekend with my sis and her hubby, so it should be great!

Normal living. It's great when it happens! :o)

Diabetic parents of diabetic children

I think this must be my week of questions. That, or things are starting to solidify in my brain and more questions are popping up.

I'm going to write a scenario here and change the names to protect the "innocent"! LOL!


Let's say you have a non-compliant diabetic father - let's call him Howard. And he has an adult son who is age 30 who is also a non-compliant diabetic. We'll call him Greg. Now, Greg has an 8 year old son who is not a diabetic (yet). We'll call him Tim.

Both Howard and Greg both have extreme highs and lows in their sugar levels. When they go low, they get angry and yell and scream at anyone around them. But they don't remember yelling or screaming at all.

Greg grew up this way. Being verbally abused as a child when his father had lows.

Tim is being raised this way, verbally abused by a dad who yells at him all the time.

Neither Greg or Howard comprehend that they are verbal abusers - simply because they do not remember the things that they said or the things that they did during their lows.

Greg does not think his father has ever done anything wrong with him - based on the presumption that whenever his dad was low and yelling at him, he was low at the same time and did not remember the things his father said to him.

Tim, not diabetic, no lows, good memory, will come to understand that he is being abused because his teachers at school are noticing changes in his behavior and are talking to him about what's going on at home. Tim will grow up knowing that he is a verbally abused child and he will know why. He will know that his father was completely unaware of what was being said, of what was going on because he was in a low at the time he was angry.

But how many children of diabetic adults grew up being abused, understand they were abused, but do not know that their parents have absolutely no recollection of this because they were in a low (or high) when the event occurred?

I met a 30 something woman not too long ago who told me she was horribly verbally abused as a child. Later in the conversation she told me that her dad was a diabetic who just refused to take care of himself. Something totally clicked in me and I started asking her questions. She realized that her dad probably had been in a low with each outburst and probably had no idea what he had said or done to her over the years. Now, how sad is that?

And where are the studies on the relationship between parents who are diabetics and children who are abused? I'll just bet that ratio is pretty high!

Where are all the resources for spouses?

I see loads of stuff for parents of kids with diabetes. I see loads of stuff to support families of compliant diabetics. But where are the helps, the supports, the suggestions, ideas for spouses and adult children of non-compliant diabetics?

I have read thousands of webistes that tell you what to do to get better if you are the diabetic. But nothing that tells you how to live with a person who doesn't follow those suggestions.

I've read all the books written on this subject (I think) and only one barely touched the subject - and it was written for adult children of non-compliants (don't ask - I wouldn't remember the book!)

I've read so much about how to prevent diabetes as well.

I've also found frightening little about ESRD - from the standpoint of family life once that sets in, caregiver help, etc.

I've read lots of stuff where they tell the family to be supportive of the diabetic person. Tells you to change your own diet to match that of a diabetic, to only stock the foods they will eat in the house,

that all assumes that the diabetic will be compliant. I see no reason to give up chocolate any more. I gave it up for 7 months and he simply went to the store and bought candy and cookies whenever he wanted them and ate them in front of me!

So, where is the support for families of non-compliant diabetics? Anyone found it yet?

Writing about my experiences

MS.b wrote:

I have some friends who are widows of diabetics but they refuse to talk about their experiences. They will just shrug my questions off and say, oh, that seems like a long time ago. It is like they do not want to remember their beloved dh's health decline. Always remember that there are other wives' out in the world how look to your blog for information and support. There is not a lot of information out there about dealing with these issues.



Here's my thoughts: It is extremly difficult to live with a non-compliant diabetic. It is personally so painful for me. Do I let him have a candy bar when I know it could put him into a coma? How much do I argue with him about diet? Fight to make him eat right? Do I just give up, give in and let him do whatever he wants?

And then when he dies, do I live with the guilt? Do I blame myself? Do I wish I had tried harder, yelled more, been more demanding that he take better care of himself?

I can only imagine their personal pain. I can understand that they want to forget about it, not remember the pain and grief, and get on with life - move as far away from the pain of this as they possibly can.

I know, because I swear, I will never have anything to do with diabetes the rest of my life, once this is over.

I have so many days where I want to hit the delete key and just delete this entire blog. When I read back over what I have written, it only serves to remind me of my personal pain in this journey.

But then I remember the very reason why I started this blog. There is so very little written from the view of a spouse of a non-compliant diabetes. There is no help. No support. And prior to this blog, I just felt completely alone in this. I felt like no one understood at all. And now, I do know differently.

It is extremely hard and painful to write what I write. There are so many hateful comments, people who say I don't love him, people who claim it is all about me, people who tell me to leave him. But there are also those who write a simple "I understand" and I know they do and I know I'm not alone in this.

Very few people write about their feelings when they lose their child to death in a car accident. Fewer write about their pain when a child is murdered. I imagine this is similar. It is hard to find the words to express the pain, the loss, the grief. I write about him killing himself one cell at a time. I write so that his children might one day read and know that he did this to himself. I write so that when he dies, I will reread this and hopefully understand and remember that there was not a single thing I could have done to help him, that these are his choices and that I cannot change him. I write so that I will not blame myself, that I will remember that I cannot blame him, that his disease has progressed to the point where there is no one to blame, it is just what it is and we live one day at a time.

I write so that others who are seeking answers can know that there isn't much out there on this topic written from the perspective of someone actually living this on a day-to-day basis.

And I write most hopefully so other diabetics will read this and take care of themselves so that their spouses do not endure this most horrible pain of watching the person they so desperately love, die, one cell at a time.

Tonight, I am on the second night of a 2 day break away from home. Taking care of the caregiver, giving myself a mini respite at my sisters. One of my most important lessons. Take care of me so that when I get home, I can smile at whatever faces me.

DW

How do you tell

if he's getting worse or not? It's like he bounces from one problem to another. This morning, I think he was having a high. Extremely sensitive. And to top it off his desktop monitor quit working and of course, he blamed it on me. Started yelling and I made up an excuse to run to Walmart to get out of the house. Came back an hour later, monitor working and he was just all happy to see me and started talking about renewing our wedding vows in 3 1/2 years at our 10 year anniversary. (While my brain is thinking - we'll be lucky if I'm here in 3 1/2 months! LOLOL!)

About 1:30, I saw him eating some smarties and asked if he was having a low and he said he was starting to crash. So there's today's high and low that average out to a normal A1c. Sigh.

He decided he wants all new office furniture - and just a year ago he threw a fit when I suggested he get new furniture. (More of the roller coaster ride).

His back is hurting him so much he can barely move. Lower back. He said he called the doctor and they scheduled him for an appointment in 3 weeks. I suggested we go to the ER. I mean - he can't move! So then he started moving. Well, you can tell that it hurts, but at least he is moving. I suppose if it gets real bad, he will call the doctor back. And of course, he could well be lying and never have called the doc at all.

It just seems like he is having more and more angry then happy spells, changing his mind on things, and loss of memory. I am trying my best to just roll with the punches, not take anything real serious, and take care of the caregiver - as much as I can. And pray. I do think prayer has become a much bigger part of my life. After all, it is a form of meditation and that helps.

DW

Dear Widow of Diabetic,

Where do I start with my questions? I must have thousands. How do you stay aware of the difference between changes in his personality that are directly related to diabetes and those that are just part of the aging process? When do they start dialysis? Do you share with anyone else that he is incontinent? How do you tell your own mother that you are doing great when she can read you like a book?

What are the things that happen to him physically before they diagnose him as ESRD?

I keep thinking nothing else can go wrong, but then it does.

How do they go blind? Overnight? Both eyes at the same time? or does the vision just progress until they can no longer see with correction? My DH has had cornea transplants, wears hard lense over soft lenses and readers. I just don't know how he sees a thing. He spends an absolute fortune on the latest in HD TV stuff. Movies are his life. What happens when he can no longer see them?

When do you say "no" to caring for him? To doing all the driving? To running up and down the stairs fetching whatever it is that he wants?

OK, those are just for start.

This week, he is still having wild, strange dreams all night long and is not getting any rest. The skin around his eyelids is looking very pink - compared to the rest of him looking gray/white. He has slept almost this entire weekend. It's 7:30 pm and he's gone to bed for the night.

I think I'm just tired. :o)

DW

Father's Day blues

This has nothing to do with diabetes, but everything to do with how a non-compliant diabetic reacts. He woke up in a totally foul mood today. Just a completel grump. I thought he needed to eat, so offered to take him out for Father's Day. Seems the problem was that his 33 year old daughter had said she would come visit today and then he did not hear from her after that conversation a month ago. But then, he did not call her to follow-up either.

My son (his step-son) called to wish him a Happy Father's Day and that at least put a smile on his face. But he sat here and sulked and sank into an even deeper depression as the day went on. He didn't want to do a thing (was waiting for the phone to ring) and the longer it went without ringing, the worse his mood got.

I can't help but think part of this is just normal, but part has to do with sugar levels being out of whack, on-going depression already in place due to meds, and his recent state of being lethargic all the time.

His son finally did call him at 9:30 pm tonight. His daughter never called and never showed up. I feel so sorry for him. I know he dearly loves his kids and they treat him horribly. I'd have to say that overall, today was about a minus 10. I'm so tired. I think the caregiver needs to take care of herself tomorrow.

No energy to even think about posting.

I just can't do this. I can't keep up with him, with my life, with our existence. I am beyond exhausted. Just cleaning up the crap after him. The whole house smells of urine and I know it's from the depends. He refused to take the trash out and I find myself going nuts taking out the trash, washing his sheets, just trying to keep up with the smell and nothing else. I don't know what I'm going to do. Tonight is really bad.

I have moved into the guest bedroom and it is pleasant in here. But the moment I walk outside, I smell it. We have a trash can for the upstairs out in the hall and I guess tomorrow I will move that into the master bedroom. At least get that smell out of the hallway. Sigh.

He is sleeping almost all the time these days. Part of me thinks that's a blessing. The other part of me is just so bored I could just scream. When he is awake, he just lays on the sofa and watches TV. Today, he got up at 11 am. Went back to sleep at 2 pm. Woke up at 5 pm. and then dozed until 7:30 when he went upstairs to bed. This seems to be a daily pattern. He says he is not sleeping well at night, is having really strange dreams. I suggested it might be side effects from some of his drugs. He said "no".

I do think he is really depressed right now. And he refuses to tell his doctor. I have been doing all of the yardwork this summer and I know that has me worn out as well. I just can't maintain a yard that is over 2/3 acre. Those weeds grow way faster than I can move these days! LOL!

It scares me to think about what we are going to do next. I'm having a terrible time just sorting through things trying to downsize. It seems to be taking forever. But I am working on it, slow but sure.

Got an offer to travel and demo with a manufacturer for the rest of the summer. Will make 5 or 6 weekend trips with them and I totally jumped on the chance to get out of the house even for a few weekends.

Oh, he said he went to his doctor this week and there have been no changes in any of his levels. I really wish I could see the lab results, but he won't share them with me. I just have a feeling in my gut that he is not telling the whole truth. Someone said they think he treats me like an employee - he only tells me what he wants me to know. My thoughts - employees do quit! :o)

DW

Kidney stones

This morning he went to bed about 9:30 am and did not get back up until about 2:30 pm. Tonight he told me he thought he had been passing a kidney stone. He said he hasn't had one in about 20 years. He thinks it has passed.

He is just not sticking to the "diet" at all. Tonight we went out and he had a hamburger and fries. Exactly what he does not need.

He said he thought he might be depressed. I suggested talking to his doctor and perhaps going on meds for that. He just blew me off. As usual. But he did say that he wondered if that is why he sleeps all the time.

He has also reversed his position this week on downsizing and moving to a 1 level condo. Now he says we are staying here and installing an elevator. But I think that's ridiculous. It doesn't solve the issues of getting a wheelchair into a bathroom. Just trying to think about what is best for us for the future. I just can't keep up with the cleaning, gardening and yardwork. It is exhaustive.

optic migraines

Yesterday, he said he was having a whole series of optic migraines. He described them as huge white spots in the middle of his vision. He said he has had them in the past and has talked to his doctor about them. He just sits for about 15 minutes and they go away. No headache with them.

And his right rotator cuff is giving him fits. This morning he said he did not sleep for the pain. So I asked if he needs to go see the doctor for that and he said, "I might".

I'm wondering if optic migraines are a precurser to diabetic blindness.

DW

Change?

We have booked a cruise for this fall and he has started a diet. He has stuck with it for 4 whole days! And he says that on June 1, tomorrow, he is going to start and exercise program. Of course, I am joining him. I am soooo excited! I hope and pray this is what he needs to turn his eating around and take off the 50 pounds he has put on in the past year.

Good things this week!

DW

quiet week

Things are going pretty well. He still has lows and I go for a walk, get out of the house, etc. His next round of medical appointments starts some time in June. We are eating out less, eating more fresh fruit and veggies. He promised to walk today, but didn't. We'll see if he walks tomorrow.

He's back

Pretty funny. He liked what i had done with the dining room. But claimed the guest bedroom is too "feminine". Well...it's where I sleep now...what did he expect? LOL!

He is sleeping. I knew he would. Travel drains him. He carried his bag upstairs and then had to sit on the corner of the bed for 10 minutes trying to get his breath. I almost asked him if he needs oxygen. His toe is still horribly infected and it almost looks like he has a gout infection in his right foot. He said that both of his hands are just wracked with pain. Well, that's a new one for me, but I took a look and sure enough, he has gout nodules all over his fingers, just like on the bottom of his feet.

Poor guy! I can't even imagine what is next. But we will continue to take this one day at a time.

Cpap machine

Sometimes, I just don't notice much in life. Today, for some reason, I woke up and saw his cpap machine sitting beside his bed. That means he went on this trip without it.

One more indication to me that he has no inclination whatsoever to take care of himself.

update

he flew home Monday and back out this morning. This is a business trip and he's gone for a week. He wasn't home long enough for anything to be discussed...but I'm making changes in my own life. Going to cut back, clean out, downsize so we can hopefully sell this house next year and move into a condo...or a 1 level house.

He has a horrible infection in the 2nd toe on his left foot. Is oozing puss. He is limping when he walks. We did go to the store yesterday and he bought new walking shorts....size 40 waist. 3 years ago his waist was 34. He did not use his CPap either night he was home. But he only had one giant Milky Way bar. I can only imagine what he will eat this next week. Somehow, I just don't care. I plan to just enjoy the solitude, work in my studio, continue to finish remodeling the guest bedroom, and take care of me.

DW

Mother's Day

He has flown to be with his mom....I spent today with mine. Tomorrow, I plan a very quiet day of solitude, totally alone, in my own home. My "gift" to me on Mother's Day!

I think it will be wonderful!

I'm sure my boys will call. But other than that, I plan to sit back and enjoy the quiet. Perhaps a long bubble bath, maybe a full day of chick flicks.

I wish each of you a truly peaceful, quiet, non-stressful day.

DW

How can he not know?

It truly does amaze me at times. Ok, all of the time. I joined his staff for a "happy hour" last night and one of his employees was telling me how my hubby was slurring all of his words in a staff meeting 2 weeks ago. I explained that was the meds he wason for his cracked ribs.

My hubby is sitting right there and he says, "I did not slur my words!"

So not only have I told him that he did, but a co-worker also told him. And he still doesn't remember, or worse yet, believe, that he slurred them so bad no one could understand a thing he was saying.

I'm starting to think that the nerve endings in his brain cells are dead! LOL!

And ok, I have to LOL or I'd be sitting here crying.

Current status:

Sleeps in til about 8 am, gets on morning business calls. Takes a long nap from about 10 am - 1 pm, eats a bite, gets on afternoon calls. Day ends about 4 pm and he takes a nap til 6 pm. Dinner. Upstairs in bed to watch more TV about 7:30 pm.

His eyes are looking quite pink around the eyelid this week. But the rest of him is a grey/white. Still in depends 24/7. The tale-tell signs of the toilet bowls are an indication that bowel incontinence is still here. I don't think the meds are helping a bit. He's been on them at least 6 weeks now. No idea how he thinks he going to take 2 trips in the next 2-3 weeks. We will see how he manages.

I plan to bury myself in my art and with my friends while he is away. :o)

Home

I think the man missed me! LOL! But he is in pretty bad shape. His ribs have not healed. Every sneeze, cough, movement makes him wince. I can almost feel the pain. Poor guy.

On the drive home from the airport, I just decided to be gutsy. Told him all the changes I wanted to make. He didn't agree. But he did not disagree. I told him I'm going to go to every medical appointment he has...I don't care what it is. And that he should call his doctor tomorrow and get and OK to fly to visit his parents this week as I don't think he's well enough to go. Wasn't really a demanding conversation as I was joking quite a bit. But I do think he at least heard me. We'll see what happens. But I'm going to push him tomorrow to call his doctor.

He's just so happy to have me home I think he'll do anything I ask....for the next 2-3 days.

Why do I stay?

L wrote:

"May I ask, honestly, why you won't consider leaving permanently?

You are very frank in your blog about your unhappiness and your husband's inability to change his ways. It sounds like you are really a different person being apart from him.

What keeps you there? Is it shared history? Religion? A fear of how he will manage without you?"

Well, in all honesty, I have truly, deeply, honestly considered leaving him. More than once. And it was a huge part of my extended 3 week vacation right now. I needed time to think and come to a turning point in my life. Religion has no part in this. Fearing how he will manage without me isn't a consideration either. Shared history is a big part. Love is a huge factor. I truly do love him. When he is "normal" he is a complete delight to be around. When I have the man I fell in love with....I am at my happiest.

And for now, the times that he is still "here" are worth staying for. I know...love is blind! LOL!

I think what I have learned these past 3 weeks is that yes, I need to take care of the caregiver (me). I need to take a few more breaks. I need to develop a little more of a career/job/occupation for me. I don't know if that will be in art...or if I will return to the workforce. But I need to do something to have a goal, or a reason to be busy a little bit more.

Aren't we all different when we are away from our spouses? I know I'm more rested. I do believe I'm finally over my pneumonia. My chest feels fine....not tight like it was. No wheezing sounds. It's warm here and I've been out walking as well which is great. I forget how much I miss walking when I get cooped up inside the house during the winter snow months. And I've been surrounded by great friends, lots of creative play, loads of smiles and warm hugs, happy reunions and such.

I'm going home tomorrow and I'm going to stay. But somehow, I feel in my bones that things are going to be different. Maybe they have to be. And I can hear a little something in his voice. He had a sneezing attack yesterday and really hurt his ribs again, so he took another pain pill...it made him loopy again. Today, he said he wanted me to come home and tell him if he was ok or not. I told him that from the sound of his voice alone, I could tell that he still had the drugs in him and I asked him to not take another one of them until after I got home. Do not need him driving to the airport under the influence of something so strong. 22 hours after he took the pill, he was still slurring his words. Truly scary.

But my saving grace is the fact that I do know I can walk out any time. I won't do it on the spur of the moment. I will take another break and seriously think about it. But I do have that option. Every single one of us has that option every day of our lives. And I can stay another day knowing that I have that option.

DW

Surviving vs Living

I thought the comment that ended in "we all survive" was so interesting. It got me to thinking about this. Yes, I do know that as spouses of diabetics...we all survive. But do we live?

I've got just a few more days before I go back home. I have been "living"......TRULY living....for the first time in a long time, while here. I haven't had to listen to his angry outbursts. No one has been flopping their body in my bed at night. No sleep apnea with all it's gasps for air. I haven't woken up in the middle of the night for a single thing. Haven't seen a needle, a pricker, any prescription bottle.....

I have been living.

And it's been wonderful.

I don't want to go back to "surviving". I want to continue "Living".

But I know if I go back to him, which I will do, I will go back to just surviving.

I do feel renewed. And I'm hoping it will last a few weeks!

I will probably go into a depression and a deep funk when I get back. You all will have to pull me out of it! :o)

For the moment....I'm going to enjoy the heck out of the next few days!!!

How to contact me

Anonymous. I was starting to worry and am glad you signed on. But I understand, it is a huge risk.

My whole blog is a HUGE risk on my part and it's a very big part of why I do so much to keep my ID hidden. If my hubby could ever prove this was me (like he is going to go search the net regarding non compliant diabetics???) he would kick me out in a heartbeat! And probably threaten me in the process.

A few of my close friends know about this blog. No one else in my immediate life.

But....you can email me :

diabeteswife@yahoo.com

I will check there about once a week to see if I have any notes. And I can share my telephone number that way.

I get tons of anonymous emails, so be sure to let me know who you are!

And anyone can create an email acount via yahoo. I know many do not like to use yahoo....but it really is a safe way to email via the internet in an anonymous fashion.

I know that talking...just hearing another voice, does matter. Knowing that we are not alone...that there are others who share our same fears and concerns, hearing their stories....does help.

I think in the 2 years that I have blogged here, only one other spouse has posted that they stayed with the diabetic until death. I can certainly understand why. It is not an easy journey.

And yes, I know you love him. Just as much as I love mine. But love does not make this an easy life at all. It doesn't ease the pain...if anything, it might make it more difficult to sit there and watch the person you love so much let their life go one cell at a time because they won't follow the rules!

I had dinner last night with a very special friend of mine. He used to be my church choir director. He is a diabetic. He said about a year ago he got so frustrated with all the meds that he quit them cold turkey. His sugar went up to 600!!! I just about came unglued! I told him everything that was going on with my husband and said, "Do you want to be walking around in depends all day long in 6 years???" I could see in his eyes that the "light" was turned on. I think he made some life changing choices last night. It was the first time I had told anyone about my hubby's depends. But I do not want another person to go through this. He is 6 years younger than my husband.

I feel my blood pressure going up just thinking about it! LOLOL!

I think I'm almost ready to go home! 3 more days of teaching classes and shopping, resting by the seashore. It's all been amazingly wonderful!!!

DW

Researching insulin pumps

I guess I should share some of my past "medical research" history. I raised a son who was a severe asthmatic before internet access....and a son who had a severe seizure disorder. In the days before patient advocates. I was their only advocate and spent hours in medical libraries doing research on both their medical conditions. And simply asking pointed questions to their providers in order to get them to think about proper treatment plans.

So I've done the research on this as well. And when someone who provides medical equipment wants to post that 100% of thier patients have had success with their pumps....I will simply hit the "reject" button.

Why? Mainly because I want to hear from the SPOUSE....NOT the patient...that it was a success!

Have I learned my lesson with this disease or what? Non-compliant diabetics are in such denial they will claim success with anything and everything! So if you are a provider....take note, start surveying the spouses. IF the patient even still has a spouse! Talk to the children, How about co-workers? A much better judge of "success" than the patient.

And "Joel", I have an MBA. I know full well that you can make statistics say anything you want. :o) My hubby has a perfect a1c because he has enough highs and lows during a 24 hour period that they balance out to a normal average. So much for numbers!

to quote part of what you wrote, "Diabetes is just a word, not a sentence". I disagree. Diabetes IS a sentence. Every remaining moment of your life totally depends on whether you choose to be compliant or non-compliant. Your moods, your anger, your attitude....is all completely controlled by whether you manage your highs and lows, or choose not to manage them. Diabetes in a non-compliant person is truly a sentence for their spouse and their family.

Anonymous: Yes, it probably is too late for an insulin pump for hubby. If you took one look at his feet, you would wonder how he has managed to escape amputation to this point. Again, hubby refuses to test even once a day. He will only test when he "thinks" he is high. Sigh.

Christine. I think from my research, you are right on. Thank you fo rposting what you wrote. My hubby is not willing to do any o fthis. Perhaps his physicians recognize this and it's why they do not push him to get a pump. Count carbs? He would just guess and enter a number. So I agree, he would be worse off doing things like that.

I know many of you do not believe me, but I am seriously trying to paint a picture of what life is like with a totally non-compliant diabetic. I'm sure each one is different. But I'm getting enough comments from other spouses to start to think there are quite a few common threads that we all experience. Perhaps it's just a whole different world trying to live with someone who is non-compliant. Probably much like an alcoholic who won't quit drinking and is drinking himself to death.

Today, he was in a pretty foul mood on the phone. I could tell he's not doing well. So I'm glad I'm still on "vacation" and don't have to deal with his moods. I'm almost dreading going home. 5 more days of peace and quiet. I'll enjoy every moment of what's left!

Now, you also need to remember that I have a husband who's test strips...the Rx box....is dated 2001!!! That should give you a clue as to how often he will test himself. To even think that he might test once a day? let alone 6 - 8 times a day.....simply put....insane! He is NOT about to do that. So how could putting him on a pump work? It would truly have to be 100% maintenance free. Testing equals maintenance.

insulin pumps

I thought I'd write about them today. My hubby does not have one and REFUSES to get one. Why?

They require "work".

They are not 100% maintenance free.

It is an outward sign of anotherwise unseen disease.

It is an admission that you have this disease, so you really can no longer deny it.

Now remember, this is a man who will tell you that diabetes is a disease of the pancreas AND NOTHING ELSE!!!

And although his kidney function is down to 25%....he will repeat over an over that this is NOT diabetes because diabetes only impacts the pancreas.

He truly is brilliant at finding ways to deny there is anything wrong with him at all. And I do have to giggle....ok, admit it...what guy ever admits his own faults? And I'm sure my hubby sees his low functioning kidneys as a "fault".

And once again, I cannot make life choices for him. He has to do them himself. He has heard the advice of his doctors. He refuses to accept what they tell him is best for him. So no pump for now for all the reasons above. I'm living with a man who has made a choice to die, to live the remaining time he has the way he wants, gobbling down one bag of potato chips and chasing that with a bag of chocolate!

How sad is that?

A joyful day!

I started out getting early to the store where I am teaching while on "vacation". And the owner gifted me with a craft tool that retails for $150.00! What a great way to start my day!

I've taught at this store before and today, the class was filled with women who I've met in the past. So it was nothing short of a grande reunion.

Then 3 more "old" pals showed up to interrupt the class with so much fun, my jaws still hurt from smiling!

I used to live in this city and have been gone for quite some time....so it's always fun to come "home" and see so many of my friends. Women who knew me "pre diabetes". Women who are very blunt about asking me about the dark circles under my eyes....and rather than explaining.. I just laugh and tell them it's my old age!

There was so much joy today. Such a nice change. So refreshing. So uplifting to know that I can still find this in my life. Truly helps to renew the spirit and refresh the soul!

Joy. Have you found it lately?

Ahhhhhh....

Ever have one of those "ah......" moments? I'm having one now! Alone in my bedroom at my girlfriend's house. Quiet. Peaceful. No one next to me with restless leg syndrome or sleep apnea. No one snoring. No one wearing depends. It's just plain quiet.

How I have missed this! To the point where I almost forgot what it was. I can think. I can clear my head. I am just wrapping myself up in the peace, the quiet, the tranquility of all of this.

It's truly wonderful. Refreshing. Energizing. I may have to come back every 2-3 months and get my spirit refreshed! I still have 6 more days here and I plan to enjoy every single moment of it!

Ahhhhh........

:o)

The truly scary part of being the spouse of a diabetic

Dear Anonymous. Rather than go back to the other blogs, I'm going to respond to your comments in a new blog. It's the easiest way I know how.

First...is he still gone? I was a little confused on that one. Did he move out? If it were me, I would get an attorney. I can't begin to fathom and angry diabetic, moving out in a huff, leaving me with children at home. More on that below.

You wrote:

" I have had some issues in dealing with some of the things my normally loving husband said to me during one of his last outbursts. I've been really down. He attacked me on every level - being a parent, my family, my business, my housekeeping, my friendships, and finally my faith. Then he sleeps it off, doesn't really apologize (because I don't think he remembers anything or he's a expert on everyone else) and expects me to just pick myself up by my boot straps & smile & laugh"

That was me 2 years ago. And yes, the words hurt so much that I would cry for days on end. That old saying "sticks and stones may break my bones but words will never hurt" just is not true. Words hurt to the very core of your being as they are nothing less than abuse. And of course he sleeps it off and then expects you to forget just like he has forgotten all about it.

I think it's one of the hardest things a spouse has to endure. The tirades that occur during a low that the diabetic will never remember....but are like a fresh stab to the heart forever to you.

" I have 2 children, so I have to keep a good front for them. He expects the whole world to revolve around him - his day, his recreation, his needs. In my last post I shared I have no one to talk to. Well he stormed out this morning. I was in a wonderful mood - beautiful day. He packed up all of his clothes & he's gone. This was all because when he got up in the middle of the night I asked him if he remembered to take his meds. I ask him this about once a week. He yelled at me, Have you taken yours? I don't take any. Thankfully, our teenage children are oblivious."

You may think your children are oblivious. But they are not. In some fashion, their father's anger is abuse and they are growing up with that. If you read one of my recent posts where I was chatting with the adult child of a diabetic father...she knew she grew up with abuse but had not associated it with her father's sugar lows and was shocked when I explained that he probably had no recollection of it. Yet she remembers it so vividly.

You do have me to talk to now, and a lot of other spouses who are slowly coming forward. I think a natural evolution of abuse is to think it's all our fault, that we are the "imperfect" spouse, that we "deserve" this kind of treatment, or that there is something "wrong" with us. We tend to clam up. To "believe" it is all our fault. Trust me, I was right where you are 2 years ago. I just cried so much my hubby told me I was insane. Of course....he also blamed everything on "my midlife crisis" and to this day...he thinks "I'm better because menopause is over". He is so completely clueless. I am better because I have gotten therapy, I've done the research, I know it is HIM and not me, and I am making choices based on facts, not his emotional outbursts.

It was extremely scary for me to "stand up" to him the first dozen times I tried. But I was (and still am) ready to walk out in a heartbeat. And I think once he realized that, things slowly started to change.

But back to your children. I'm only beginning to realize the full impact of my husband's scenario. His father is a diabetic. So my husband proably grew up in a household with these sugar-low-induced-outbursts. Shall we call them SLIOs? My husband has had diabetes since he was 22 years old. So I am sure he then had the same SLIOs towards his own 2 children. His kids are now in their mid 30s and are both pre-diabetic. His son has 2 daughters. So can you see the pattern that continues throughout the generations?

The difference is that I have identified his SLIOs for the most part and have come to learn that I can either insist we immediately go out to eat (and feign hunger on my part) or I can have my own fight-to-get-your-sugar-high with him. (Laughing here as we need an acronym for that one, too!) But every once in awhile I totally space it out and miss one of his SLIOs.....but eventually I figure out what is going on. And at that point, I realize that it is NOT HIM saying those mean words. It is his body's way of trying to let me know that his sugar is down and I need to help him out.

OK....it's my way of staying sane. Because on some level, he must think those awful things about me if he is going to say them in a low. But I swear, he does not remember saying them at all, will deny he ever said anything that horrible to me and thinks I think them up in my head!

Most of my husband's SLIOs come when I'm at my happiest. When I least expect them. Hmmmm.......

"I was so happy last week that he (after me insisting this was his sugar levels AND he wants to prove me wrong) made an appt to go to Mayo. He has been once before without me. (I didn't know he was going.) The doctor (I think) scolded him pretty bad & told him if he didn't drop 20 or more lbs & get in shape he was getting a pump. So he hasn't been back, just continues to eat and eat. Finally I took the initiative 2 weeks ago in desperation to visit my own doctor. I was really scared, and don't laugh, that he was going to check me into a mental health clinic to save face for himself. Now remember I have not shared what I have been going through with anyone for almost 2 years. He told me he called all of these places about me. HE HAS diagnosed me as bipolar because I "cry all the time". He has never taken 1 medical related course in his life! I admit his outburst the week before, the one I wrote about in my first post, that I really fell apart. I have never had anyone talk that way to me. It was all over me interjecting to suggest my daughter wanted a hard shell taco instead of a soft shell taco. He called me down in front of the waitress like a 2 year old. I just got up & went to the car. All the way home he screamed & screamed. I found myself retreating into myself. I was scared & I hated myself for letting someone talk to me that way and I've heard the same things so many times - stupid, crazy, not good enough, not religious enough... I think I was just about there! I stayed up most of the night just praying. Sad to say, I haven't done alot of that lately."

I really want to cry for you and with you. I can't begin to tell you how many, many, many times this happened to me. Like you, I really thought I was the insane one. My husband was forever telling me that I needed mental help. He could make me cry at the drop of a pin. I realize now it's because I was scared, I had no idea what was happening, I felt like our marriage was falling apart, that it was me...that I wasn't a good enough wife....everything you just wrote. Everything he said belittled me. Everything was my fault. Oh goodness....if he couldn't find an ink pen it was because I had taken all of them! And pray? well...my knees had callouses! I was "weepy" for nearly 2 years. I NEVER talked about any of it to anyone....not even my sisters who I am very close to. I totally fell apart....with each outburst....and it even got to the point where I fell apart if he just looked at me with an angry look.

I didn't want to endure another outburst. I couldn't even handle the thought of it. I remember laying awake in the middle of the night thinking that if I get up to go to the bathroom and I wake him up, he will get so mad at me.....and I would just lay there until I was in such physical pain...and then lay there until he was snoring so loud I hoped I could get up without waking him up. You get to where your whole life is just eggshells and you have no idea what it is that is going to cause an outburst.

Someone asked me a couple of years ago why I had such black circles under my eyes. That was a turning point for me. I realized it was impacting my health and if someone else could tell there was something physically wrong with me, I had to get help. Well...the black circles were from stress and lack of sleep...NOT from him hitting me! Guess I should clarify that!

"The next day one of the people who work under him at his job approached ME & she said things had been terrible for her. I was put in a very awkward position. I told her to do her job and not argue with him. He guessed by something she said that she and I had talked. I have never lied to my husband. I explained to him how it came down and he said I was not to discuss anything else with her. The next day he made me an appt. to go to Mayo, too. After this morning's incident, I've thought about it, and I canceled my appt. and I'm going back to my own doctor here. I feel like the whole reason for me wanting to go with him in the first place was to be there for him & possibly get some information on helping him. I would never go behind his back, but I feel like he wants the docs there to find something on me to take the pressure off of himself."

Your advice to his employee was very good. Do your job. Don't argue. I have started telling my husband that he needs to call so and so back and apologize to them. Or I will ask, "do you realize you were just yelling at that person?" I think we are past the stage where you are....my husband has started to realize that he does not remember some of these things. But I also have learned to tune in and listen to his work conversations (he works from home most of the time) around 10 am....when he seems to take a dive in his sugar levels.

And good for you for cancelling your appointment! Trust me, as women, we know our own bodies so much better than anyone else, so go with your gut feeling on that one.

My husband still will not allow me to go to the doc with him. He will even lie to me point blank about which appointment he is going to in order to keep me away. "It's just the eye doctor today." and then 3 hours later, "well, I messed up, it was the neuropathy guy"! Can you believe he LIES to me? Just proof that he does not want me to know what they are telling him. Well...one, I won't let him lie to the doc and 2, I would then know what he's NOT doing! Such a child!

"I know I'm rambling, but this is the only outlet I have. I can't sleep. I am worried about him. I don't know anyone I can confide in that could talk to him. He is known for being a expert negotiator and a problem solver in our community. What kind of credibility would I have? I'm getting worried how this is affecting his memory, judgement, & decisions as it pertains to our business, too. When he left this morning, he yelled he had had enough & was calling a lawyer. I am heartbroken or am I just in a bad, bad dream."

Sad to say, this is not a bad dream. This is very real. The good thing...you will survive. IF IF IF YOU take steps to protect yourself! Get a lawyer. Go see a psychiatrist. Go through the entire battery of exams to PROVE YOU ARE SANE as he is most likely going to accuse you of being insane. Find a diabetic nurse who will provide you with some counseling. Join a diabetic support group. Even though he may leave you.....he is still the father of your children and a support group can help all of you deal with him and his outbursts even when he is not living with you.

Uncontrolled sugar levels WILL destroy ALL of the nerve endings in his body. So, that is not just the nerve endings that go to his fingers and toes....it will attack the nerve endings in his intestines, his heart, his brain. He will forget things, make bad decisions. It will eventually (if it remains out of control) impact decisions, judgement, driving...everything. He may slip into a coma and not even know it if he is lucky enough to just "wake up". The first time, if like my hubby, he will just deny it happened...even when it happens with a house full of people. And when I called 911 to a neighbor's house when non of us could revive him..he still got pissed at me for doing that! But at least he couldn't deny it happened because the EMTs made him go to the hospital, his levels were so low.

You know, it doesn't matter how good of a negotiator he is, or how important he is. Uncontrolled diabetes will take him down. He needs to do what the doctors tell him to do and he might be able to correct or stall the progression of this disease. But if he refuses to do that....just like my husband is refusing to make any changes at all....then you have 2 choices. You can stay with him or you can leave him. If you stay with him, you have to step up to the plate. I have told my husband in no uncertain terms that he no longer has permission to talk to me in a negative way. And when he starts in, I just say to him in a very loud, stern voice (like I were yelling at a 10 year old) "YOU STILL do not have my permission to talk to me like that". And if he keeps it up, I will get my jacket and keys and walk out. I got that from a therapist and it has worked. Yet I know that any day I may have to leave him permanently. So far, it seems to be working. I just no longer allow him to talk to me in that manner. But I am the one who had to tell him that he could not do that.

What do I have to lose? Anything I say to him in a true sugar low...he is not going to remember.

Think about the example you are setting for your daughter. If you allow your spouse to talk to you in a demeaning manner in front of her, if you clam up and "take it"....you are teaching her that is what she must do if it happens to her. And/or you are teaching both your son and daughter that it is proper behavior to talk to other human beings in that manner. I have learned that it is up to each of us to stop the cycle of abuse....even when it is SLIO related.

Shall I end by repeating, I am not a counselor, therapist, doctor. I only tell you what has worked for me and each situation is different and it could be disastrous for you. I cannot give you advice. Only tell you about my life. Just know you are not alone. There are hundreds of us, probably thousands of us....but I think very few who stay with a non-compliant diabetic until the very end. A choice that I will continue to negotiate every single day.