More comments and thoughts

Well, if nothing else, I will keep you busy reading my blog!  LOL!!!  I know we don't go back and read posts, so I like to bring them forward and make my responses ot them in a blog.  Sort of keeps the continuity of the whole process of the journey in place.

Lilly wrote:

 Here's hoping and praying that your nightmares will eventually stop! This can't make for very good nights for you. I went through many emergency room visits with my hubby, almost a year of dialysis and all the side effects, and then the kidney transplant/donor surgeries. I feel very fortunate that I did not dream about these things when I went to bed . . . don't know what I would have done! Really hope it gets better for you. As for yours and everyone else's blogs: I think it is more for us, as we "get it" in a way most diabetics are incapable of. As you said, at first you got nasty messages from pissed off diabetics! The medical profession is focused on the diabetic patient (although they don't know how to treat them half the time), but how often do they ask us how WE are doing? And how can we possibly find a therapist who can actually understand and really help? I can't believe that everyone told you it was your disease. WOW. YES, we really do need to support each other, in every way possible . . .

I think those who have needle phobias, blood phobias and white-coats syndrome know that sometimes the nightmares never go away. I was going to do a separate blog on the dialysis machines.  When he was in ICU, they brought the machine into his room.  The 3rd day, the machine broke.  I don't mean that it quit....it broke.  3 hours into the process.  The 4th day, they brought in another machine and it, too broke.  How on earth can you have dialysis machines in an ICU unit that break????  Trust me, that alone is more than enough to cause nightmares!

At that point, I didn't even know that it's ok to stop a dialysis treatment in the middle of it.  I hadn't done any research.  I was completely unprepared for dialysis as we were not expecting it.  Trust me, I think at this point I'm completely preapared....I think I could give a seminar on it.  I could sure do a better job than anyone in the hospital did.  But because of my phobias that I have had since I was 10 years old....I won't do it again.  And he knows it.

And then she wrote:

Sorry, I had to laugh, as my hubby will tell anyone who wants to listen that he does not have high blood pressure or cholesterol, and he has no heart or kidney problems. He neglects to mention that he takes meds every day for blood pressure and cholesterol, and tons of anti-rejection medicine so that he won't reject his kidney. He also reasons that since he had a triple bypass after his almost fatal congestive heart failure, and also had a kidney transplant, that everything is "fixed," and he has no problems there either! It would be funny, except that he tells his doctors this, and if it is a new doctor . . . well, you get the picture. I (just like you) will tell him to his face, in public, that YES, he does still have those problems, and that is why he takes medication for it! It must be nice to live in denial. Wish I could make it work for me!

 The more I read about your experiences, the more I think our husbands are really quite similar.  I wonder if denial is more common than I think it is.  I wonder if it's their survival mechanism.  If they admitted all of the conditions that they have, could they live with it/themselves?  Maybe denial is a way to survive.  

Lynn wrote:

I had a similar experience on the adoption.com message board when trying to find support as an adoption mom (adopted one, gave birth to three)who was struggling with her adopted one reuniting with birth relatives and abandoning us for them. The pain of coping was unbearable and I sought out others...well, I found some but the birth moms and adopted people who wrote on the thread were so nasty at times i stopped going there...now we just email each other...so i get it...and yes, I think this blogging is for US...because we get it...we get each other...we have similar experiences in that we can't always have on the smilie face...sometimes we have to vent and rant and commiserate because we don't have it easy...it is challenging to live with someone who has diabetes. HUGS and LOVE...I LOVE YOUR BLOG!

And that, Lynn, is exactly why I do not post any of the negative comments I get from diabetics.  I know they do not understand what we go through.  I know they are in denial.  I know they are having a sugar low and being nasty just like hubby does.  So I just delete and sometimes I even ban them from making comments!

Tonight, hubby's parents called. I'll have to go back and see if I wrote about the problems I had with them the night I thought hubby was going to die.  Sigh.  So tonight, hubby was telling them how much I fought for him, how he would not be alive if it wasn't for me. (trust me, they hate me) and they didn't make a comment.  Not even a "thank you for doing this for our son."  Instead, his mom asked him what happened when he went high and low. He said that when he was high, he was irritated, and when he went low, he got sleepy.  I chimmed in and said, when he's low, he's really argumentative.  But I wonder.....does he remember anything when he goes low?

He told his mom he had been out of the hospital a week.  When he hung up, I reminded him it was 2 weeks ago yesterday.  More of the short term memory loss?  I'll just keep making my notes here.

Thanks for your comments.  I know we are getting a growing circle of spouses who truly understand, who are going through the same things, who struggle with the decision to stay or leave, who battle the non-stop rollercoaster ride on a daily basis.  It's just good to know we are not alone.
DW

diabetes statistics

Time to update my diabetes statistics.....

18,000,000 people diagnosed with diabetes
7,000,000 people are undiagnosed
79,000,000 people have prediabetes (?????)
1,900,000 new cases of diabetes diagnosed in adults in 2010
1 in every 400 kids have type 1 diabetes
27% of all people over age 65 have diabetes

in 2007, diabetes contributed to 231,404 deaths.

Complications of diabetes include:
heart disease 68% and stroke 16%
hight blood pressure - 67% of those with diabetes
blindness - 28% of people over 40 with diabetes had diabetic retinopathy, with 5% having severe vision loss
kidney disease - in 2008, 44,378 people with diabetes entered ESRD, with 202,290 living on dialysis
neuropathy - 70% of people with diabetes
amputation - in 2006, 65,700 lower-limb amputations in people with diabetes

People with diabetes ages 60 or older are 2-3 times more likely to report an inability to walk one-quarter of a mile, climb stairs, or do housework, compared with people without diabetes in the same age group.

People with diabetes are twice as likely to have depression.

Every percentage point drom in A1C blood test results (eg from 8.0 to 7.0) can reduce the risk of microvascular complications by 40%.

For every 10 mmHg reduction in systolic blod pressure, the risk for any complication related to diabetes is reduced by 12%

33% of disabled adults live in a household with an annual income of less than $15,000 in 1997.

Improved control of LDL (bad chlesterol) can reduce cardiovascular complications by 20 - 50%

80% of couples with one spouse with diabetes end up in divorce (and it may be higher than that).

Diabetes is the SEVENTH leading cause of death in the United States

Yet if you talk to a diabetic....they will say....."diabetes is not a problem for me, I have it under control."

Hmmmmm........

Now, I realize that you can make statistics say anything you want. Thus I merely pulled numbers off different websites and will allow you to draw your own conclusions.  But my thoughts are that the death rate is probably a whole lot higher than reported. If my hubby has a heart attack, that will be what they put on his death certificate.  They won't put down diabetes as the cause of death.....but that is what has caused his heart disease for sure.

They don't write about the diabetics who are divorced, who live alone, who require homecare visits to attend to their needs.

They don't write about the high rate of depression. How many diabetics commit suicide each year?  So there are a lot of studies that don't get done and statitics probably look better than they would.

If 68% of all diabetics have heart disease, is it then only the 32% that do not have it who are writing their angry comments to me?  LOL!!!

If 70% of all diabetics have neuropathy.....it has to be the 30% that don't have it that are in their 20s, maybe 30s, and think they have no problems with their diabetes?

Or is it denial?  My husband has high blood pressure. He is in that 67%.  He takes medicine to control it.  It is in good control, it is never high, in fact, it tends to run a little low.  So if you ask him if he has high blood pressure, he will say "no".  He is in complete denial about the medicine he takes to control it. He only looks at the bp numbers they read at the doctor's office.  As of late, every time he has told someone that he does not have hbp, I correct him.  In public.  In front of him.  I will no longer tolerate his denial.  He can do it in private....but not in front of me.

But I wonder if other diabetics have the same "denial".  Their A1C is good....so they don't have a glucose problem? Their vision is corrected with laser surgery, glasses, contacts....so they don't have a "vision" problem.  From the diabetics I know (excluding hubby) most of them will tell me things just like this.  I think the biggest one is that they don't have any problems with depression.  They you find out they are taking some type of medication to control that issue.

Statistics are great because they make us be honest.  If 67% of all diabetics have high blood pressure....then most likely your diabetic spouse has it as well!  What these statistice do for me is tell me that I am not alone.  If 18 million people are diagnosed with diabetes and 79 million more have pre-diabetes, and if we assume that 59% of the population is married.....then there are at least 57 million spouses or significant others out there who live with a person who has diabetes.  I am not alone!

So, if 57 million spouses live with this disease and let's round down and say only 50% of their spouses have complications, that's 27.5 million spouses like me.

There are so many other questions.  What is the % of people on dialysis who are divorced?  Is it lower because at that point you stay with them to get the life insurance?

Anyone can write anything. Anyone can do a study and come up with a percentage statistic based on a representative poll of a given population.  What really matters is what we experience in our day-to-day life living with someone who has diabetes.  Knowing that even if they do keep it in control, they will eventually become one of these statistices.  The stats are not going down....they are trending upwards over time.  Which would mean to me that even if a diabetic is in good control, evenually, they are going to have multiple complications.

That's the MBA in me! (Have I confessed that I have an MBA degree?)   I love playing with numbers, reports, graphs.  My problem is that most of the "professionals" who write this stuff have zero experience living with the disease themselves.

But the "wife of a diabetic" in me is very realistic and I know that while he is in denial....I know what his future is.  And because of that, I will continue to work hard to make the time we have together as good as we can make it.  Knowing every moment that I can still chose to leave - and that's how I stay sane through all that happens to him.

DW

Maybe it's for us.....not them

I really started writing this blog because I thought it might help diabetics realize how their disease impacts their spouses and families.  And as a place to vent my own frustrations.  But after all this time, I'm thinking this is more about simply helping spouses survive.

I read somewhere that over 80% of the spouses of diabetics leave them over time.  I wonder if that's a valid statistic.  It seems high to me at times.  But there are days when it wouldn't surprise me if it were 100%!

And maybe that's why not many people are writing about it.  They leave.  They don't have to deal with it.  So they don't write about it.

Seems to me the 20% who stay need some kind of support.  And maybe this is it.

Over the years, I've been to 4 different therapists.  Not because I wanted to change.....but because they left the HMO I belong to and I got "assigned" to a new therapist.  There's an ongoing theme to each one of them.  Well, ok, several themes.  None of them have had any personal experience with diabetes. All of them said that you simply have to grieve the loss of a healthy life, healthy spouse....so thus, this is just like any other loss, so they are perfectly capable of helping me through the process.  And all of them said that it IS my disease.

LOLOL!  Just take a moment and imagine where those conversations went from that point in the discussion!

I will go to my grave contending that this is NOT my disease.  And for any therapist to be so narrow minded as to think it is.....let alone 4 of them agree that it is....tells me there is something horribly wrong with the educational system today!

Oh....the other common factor....all 4 of them were under 30years old. Which made me realize that HMOs hire the young and the cheap.  Anyone with a lick of experience has probably left and set up their own practice.

A couple of years ago, I gave up on therapy.  Completely.  I know the process of grief.  I understand what each of the steps are and how to go through them.  I also know that with age comes experience and wisdom and I can do better on my own than anyone who is under 30 with no experience trying to help me through a moment.

But how pathetic for spouses who really need help.  Who haven't learned how to live with the day-to-day rollercoaster ride of diabetes.  Who still think that when he yells obscenities at you...he really means them.  How sad that women can't get support and leave a realationship.  How brave of those who do.  Yep, I know....I just argued it both ways, huh?

I think that each one of us has to decide what to do. When to stay. When to go.  How long to stay.  Do we stick it out to the very end?  Obviously, after what I've just been through, I'm asking myself that very question all over again.  How many times do we ask it before we go?  Do I want to be here for the next round?  I did not marry into this.  It happened after we were married.  I had no clue. I would not have married him.  But then, he had no clue either.  Do I love him enough to do a single one more dialysis?  At the moment, with the recurring, continuing nightmares....I'm not so sure.

Do I simply allow myself to ask these questions over and over and over.....and that allows me to stay?

I know many diabetics who read my blog think I am absolutely horrible.  But I think they don't understand the sheer, utter needle/blood phobia that I have. If you have that phobia....and you go through what I just went through, it simply leads to all night long nightmares.  You would think therapy would cure that.  But hardly!  It comes from being raised by a nurse practitioner who did not want any of her kids to go into the medical professions.  She truly did a number on all of us.  I think perhaps my brother is the worst.  So it's not something that I think I will ever be able to overcome. I just have learned to live with it. And I did have to leave his room for many of his procedures.  Hubby completely understands.  And I think he truly understands when I say to him that I cannot go through this again.  He is quite sympathetic to the ongoing nightmares I'm having right now.  I'm hoping that the more I write the experiences, the less they will happen.

Had you told me 10 years ago that last night, I would have woke up at 2 am with the image of a dialysis machine tube breaking and blood from my husband spewing across the room.....I would have told you you were beyond insane!  LOL!!!  But that was my nightmare last night.  Which I think is quite justified considering that TWO of the dialysis machines they brought into ICU BROKE in the middle of the treatments!!!

The amazing thing is that I was able to find the strength to be by his side when I needed to be there.  Yes, I was right there each time the machine broke.  I held his hand.  I said soothing things to him.  I told him everything was going to be ok.  I came home at night and cried my heart out.  But God got me through those moments.  And now, while I know that God will get me through my own recovery.....I wonder if any therapist could begin to relate, could offer counseling, could give me any advise.

My thoughts are that you take it slow. Allow yourself to feel everything.  The pain, the fear, the grief, the loneliness....suffer as long as it takes.  But at the same time, set a deadline.  I'm giving myself 4 weeks.  I figure that he was out for 4 weeks, I can take equal time to process what I went through.  But then I'm reminded that for every 4 hour outburst, it takes us 4 days to recover.....so maybe I should extend that deadline to 4 months!  :o)

I'm writing today because I think it's important to point out that if you are seeking counseling, you probably aren't going to find a therapist who has been through this.  And yes, they can help you with the grieving process.  But somehow, I think what I just went through is a bit beyond grief.

So to each of you, may you have a blessed day.  May you find an ounce of sunshine in just one thing this day.  May you have joy for just 1 moment.  Sometimes, that's all we need to get us through to tomorrow.

DW

Answering comments

Newtothis worte:

Wow, I found your blog last night after my P-DH went off on me. Oh yes, I started it. I dared to stop eatting dinner after he scolded the nine year old for mentioning a place we were thinking of taking him and a friend to this weekend for his birthday to his friend before we definately decided to do it. I say, Wow, because after reading your lastest entry -first- I've read every entry starting from 06. I am amazed by how well you have handled your situation. It was your "Gaslight" posting that hit me the hardest. I left a comment on it last night. As I'm sure you can imagine my P-DH is being very nice today. I am just numb. I am disabled. 50 radiation treatments to my neck almost ten years ago left me unable to function fully on a daily basis. For the most part my husband is a wonderful man. We met, fell madly in love and married. I married a man with a Phd who swam five times a week, ate well, didn't snore and was kind. Then I found out a year earlier he was told he was on the verge of being diabetic. He did all he should to avoid it. Once we married that stopped. The first time he had a "swing" I was in our bed (after we had sex) and my three year old had come in to fall asleep in my arms. My husband turned into a mad-man. Yelling, pacing and just plain acting crazy. I truely thought he would kill us before dawn broke. I pled with him to stop and come to bed. Hours later he did and the next morning he chalked it up to being insecure with our quickly marrying and how much he loved me. He had never loved anyone the way he loved me and just didn't know how to handle it. Fast forward three years and the swings still happen and they are due to a blood sugar imbalance. He doesn't belive there is anything to bs and mood swings. Our wonderful doctor treats his pre-diabetic condition the same as a full blown case. The Dr. doesn't believe there is a differnce between the two. According to him the two cause the same exact damage in the end. Address and treat it now is his mantra. Although I don't know if he has address the mood swings to my P-DH he has made comments to him about how my life must be better since he is on medication. The doctor (my GP as well) has told me I can not make him do what he needs to do. That is not my job and trying to make it my job will not work. Not work for my husband, myself nor our marriage. Good advise but it sure doesn't come in very handy when I'm getting berated by a mad-man. You were so right when you wrote 3-4 hours later your DH is back to normal but it takes you 3-4 days. Your blog really is helpful to me. Thank you for keeping at it for the 5 plus years. I admire your humor. Even when you are mad your are kind. You haven't lost yourself. I guess losing myself is my biggest fear. I foolishly thought love brought growth. But, loving a P-DH takes all the warm fuzzies out of love. Love makes forgiveness possible. However, this sitution quite frankly...sucks.

Yes, I have seen the movie "Gaslight". I have even brought this movie up to my husband. To me it perfectly describes what life is like with a person who says things then later denies ever having said the horrible things to the wife he claims to love so much. Your blog is scary. My husband is in the pre-diabetic stage. However, our doctor says pre does as much damage as full blown. He takes the oral medication twice a day. He eats a little better than before but not how he should and I just don't feel like being the food/diet police with him. When he has a mood swing I have asked him to please take a bs reading. He refuses. He doesn't test his blood ever. The mood swings have changed how I feel about him. He gets upset because he doesn't believe I love him and he loves me so much. Maybe he is right. I don't love him like I used to; not blindly and trustfully like before. I'm tired of worrying what will set him off next. And I came into the marriage with two small children. It's hard to explain to someone/anyone how much you can hate the person you dearly love. This is the first time I've expressed this to anyone. I found your blog tonight after yet another round with the beast that inhabits my husband. It takes less and less to upset me these days. I went back to the bedroom...snoring and different bedtime routines have us sleeping in different rooms. I got on my laptop searched "living with a diabetic spouse" and I found you. I started with your lasted postings and then desided to go to the beginning. When you mentioned Gaslight I smiled for the first time since dinner. Thanks. What scares me is this is a 2006 posting. I don't know if I can do this five more years. I am a cancer survior. When the man I married turns into the beast I just want to give up and die. How can someone I love make me think I would be better off dead? He makes me feel like a failure as a mother, a wife and a person in general. He makes me feel like I am incapable of giving and receiving love. At times I think he is right. His mood swings are destroying my heart. Everytime another piece seems to fall away and die. Is it better to have loved and lost than to never have loved at all? At this moment in time I think the hope of love is better than having love kill hope.

Dear “newtothis”
I am glad you found my blog. I hope you will go over to the right hand side and click on the links to other wives blogs. It really is helpful to read about all the varied experiences we have….to find the common threads, to now that we are not alone in all of this.

You brought up a really great point that I think we need more discussion on. The professionals all tell us (spouses) that we cannot fix them. We cannot change them. We cannot make them take care of themselves. But they certainly don’t bother to tell us how to handle/avoid/prevent the diabetic rages, do they?

I love being reminded that they snap out of it 3-4 hours later, but it takes us 3-4 days to get over the horrible ugly things they way to us. For me, personally, it’s the sheer denial that they words were said that hurts the most.

I went through the “Gaslight” phase for 3 – 4 years. I think I survived it because I didn’t know what it was. But once I realized it was just a continuous scene from that movie…..and I started to know that it wasn’t me, I was much better. I knew that he didn’t know what he was saying when he was raging. I knew that he didn’t mean any of it. And yes, the words do hurt….but I know I am a good person. I know I am a terrific wife. I know that I’m not a failure. And I know that no matter what he says, he won’t remember it a few hours later. So now….that I’ve made it past that phase, I can survive his rages and walk away from him, go meet my friends, go run errands, just get out of the house.

And with that comes the realization that yes, he may go into a diabetic coma when I am gone…..but that is not my fault and no one is going to blame me for not being there for him.

Tough choices.

We all have to make them sooner or later.

Either I leave when he goes into a rage…..or I leave the marriage.

I am a good person and I do not deserve to be yelled at or treated with disrespect, so I do have the right to walk out when he is in a rage.

And so do you.

I’m glad my blog helps. There are times when I have been crying my heart out when I wrote something. Other moments I have been so mad I couldn’t see straight. Some posts are filled with love. I hope most are full of common sense. But at the very least, I hope it is an honest recording of what life with a diabetic is like.

FIVE years? And I was worried in my last post about where the week has gone! LOLOL!!!!

Lilly wrote:

was really worried for you that once he started feeling better, he would start resisting all your efforts. I know my hubby would. So sorry! If he continues on the path he seems so determined to take, his kidneys will completely fail . . . but then again, he must know that, and of course you do. You did a very loving thing trying to rehabilitate him at home. But if I were in your shoes, I also would be done! You do not need to be verbally abused/lied to by the man you are trying to help. At this point, it is time to back away, and let him deal with the natural consequences of his own actions. After all, (sadly) you can't save someone if they don't want to be saved. My heart goes out to you . . .

We had a good talk the day after I wrote that blog.  I think he understands.  I will never go through this again. He has to make a choice.  Eat right, take care of himself, test often.....or die.  And I will not go back to the hospital or go to dialysis with him.  I explained to him it is not a matter of love.  It is a matter of survival.  I know my limits.  We are not in our 20s or 30s or 40s.  I have lived long enough that I have the right to say "no" when something is going to have an impact on my health.

I really think he heard it....maybe short term.  Time will tell.

Lynn wrote:

You got me crying...wow...the power of the Internet...people connecting with people they only know via the Internet...I read this aloud to my hubby and he was touched too...we are both cheering you both on...hey, you never know. Hope springs eternal. WE LOVE YOU!

Dear Lynn…..For the first 3 years of my blog….I did this alone. All I got were angry, bitter diabetics who wrote me some of the most horrific things one could ever read. It is so nice to finally have a network started that consists of spouses who truly understand what a diabetic does when they are high/low/out of kilter. While the change in readership is wonderful, I am still so sad that those with diabetes deny that this is who they are, or are afraid to admit this is who they become when they are high or low. They simply still continue to think that we are a group of bitter, angry spouses and that our “job” is to be here on earth to do things for them, not ourselves! (I’m sure this paragraph will grant me comments from some of them! LOL!) It’s just sweet to know that we are not alone.

I wish more diabetics would read this and understant how they really are when they go high and low.

***************

Finally, to my sister – Tom’s wife. We started this. You were the first person who actually supported me rather than putting me down. You even named your blog after me. We have been in this together the longest. We do truly carry each other’s burdens. You, my dear, have every right to complain about his driving. I read your post.    Don’t even give what I have been through a second thought! Because if he continues to drive like that with you as a passenger….you may not live long enough to go through much else!

I truly hope that no one will look at the past 5 weeks of my life and belittle what they are going through. Diabetics, when high or low, are impossible to live with. You can’t reason with them. They won’t accept logic. They are just mad, mad, mad. In the hospital, I had a brigade of nurses to come down on hubby when he attempted that path. But now that we are home, I know it’s constant testing, insulin, food….keeping him from going high or low….a constant, never-ending, time-consuming schedule that will prevent this.

At least I have 3 more months where he cannot drive! :o)

DW

March 4th already???

I think when your spouse is sick, life just passes you by. I can't believe it's the 4th already. Where did my week go? I think the best thing I ever did was to move upstairs and quit sleeping next to him on the sofa. He doesn't like being alone! Next day, he made it upstairs to shower and was ready to move the bed up there....but I told him the guys couldn't come til tomorrow! I figured I at least deserved a few nights of solitude. But I have to say, he has made remarkable progress this week. Going upstairs every day to shower. It's wonderful!

OT actually quit coming in. We made a few modifications like gripper bars in the garage so he can go down the steps and get in the car. Got the wheelchair ramps packed up. Will call Monday for them to come take the wheelchair. We made it to the surgeon's office and while it was absolutely exhausting for both of us, he got there and back in one piece and didn't fall down!

The clinic sent someone out to do labs this week and his creatinine is down to 2.0 36% kidney function! WOW!!! That was such great news!

He has stuck to his diabetic renal diet all week long. I know it is hard for him, but I am adament that I will not go out to eat with him. We can go out 1 time a month and he can have salad or a veggie burger. We have an elderly couple that have promised to take him to an Italian place he loves and I told him plain pasta. So far, he is agreeing. When we went to the surgeon's office, I packed a lunch. We did just fine. But what a huge lifestyle change. I hope he sticks with it.

PT is still coming out to the house. But just once a week now. No clinic PT, the surgeon just wants him to walk, walk, walk.

He is back working from his home office about 1 - 2 hours per day....just the last 3 days. It does wear him out and he then sleeps for 3-4 hours while I go run errands.

So as to my life.....non existant! Yesterday, I cleaned our bedroom, did 4 loads of laundry, dishes, and finished up the taxes. Today I got groceries and put them away, cleaned the kitchen and my studio, got the taxes entered on his computer so he can file them electronically.....and that was all I could muster up the energy to do today. I haven't had a moment to be creative or do much in the way of art for over 5 weeks now. All my art pals are going to disown me if I don't do something quick! LOL!

But I'm happy to say that I think we are truly on the home stretch. While I realize that his blood sugars are still too high - running around 180 - and that if he falls off his diabetic renal diet, that his kidneys will shut down - I am happy to be where we are for the moment. I'll be even happier tomorrow when the bed get's out of the family room and back upstairs!

We have had several long talks. And here's what's bothering me now. He doesn't seem to remember them very long. I need to start keeping notes on his short term memory. I don't know if perhaps he had a mini stroke somewhere in the midst of all this, or something happened, but he just doesn't seem to remember stuff from one moment to the next. I'm not overly concerned, but do want to sort of chart that.

He's getting better at wearing his brace. Horrible at using the sock puller-on thingy. Must think I have the back of a 5 year old. ha ha!

All-in-all.....we are doing great. Hard to believe that 4 short weeks ago I honestly didn't think he would be alive today. Interesting comment by the surgeon.....he said the same thing.....that my hubby literally scared him to death. He said, "as a professional, I have to say certain things when the moment is happening, but I want you to know now that you scared me to death." He has termed him the "xxxx case" (using our surname) and said that they have been referring to us in hospital meetings and do not want this to ever happen again. Already, they have changed policy and an endocrinologist is brought on immediately when a diabetic admits for surgery. I was so happy to hear they made that change. I think it will help many diabetics.

So you all have a job to do. When I get so blame mad at him....just remind me how happy I am to have him alive! LOLOL!!!!

I have repeated to him over and over and over that I will not go through this again. That I will not be at his side at the hospital and that I will not drive him to and from dialysis treatments. I think he gets it. I hope he does.

DW

now that he's well enough.....

he's getting angry. And I'm thinking I'm the one who should be getting angry! LOL!

4 am this morning, he wakes up and goes to the bathroom. I asked him if he should test his glucose. He said he was out of strips?

OK, I know it was a ploy to not have to test. So I got mad and told him that I just really didn't care....but I will NOT go to the hospital with him next time and I will NOT drive him to dialysis.

So you all have to enforce that because we all know it's going to happen!

I got up and went to my own bed upstairs. A week on the sofa is more than my old back can handle! Got up at 6 am and came down and collected all my stuf and moved it and the puppy crate back upstairs. He is going to be on his own at night from here on out.

Here's my logic. He's now recovered enough to argue with me. He doesn't want to test his sugar. I know he is not going to follow the rules. I know he is going to revert back to exactly what he was doing before. So, why did I fight so hard to keep him on the right meds in the hospital? Why didn't I just let all that medical staff continue to make all their mistakes? Dose him at 10% his inuslin, double his beta blockers? I really do not know.

But I won't do it again. He has had his chance and I know where we are headed with this. He's going to refuse to test, refuse to eat right, refuse to eat on a schedule, refuse to exercise. He won't heal right. His back will hurt. He just wants to lay in bed and watch TV and movies 24/7. I'm not going down that hole with him!

Today, I finally went to a genealogy meeting and was gone for 6 hours. Had my sister go home this morning. Left him completely alone. Well, he had his cell phone. He was fine when I got home. So tomorrow I'll meet my art pals for lunch. And be gone again.

And really. If he goes back into the hospital, I truly plan to limit my visits to 2 hours per day.

I know....I talk big, huh? LOL!!!

Starting tomorrow, he is going to talk to all the nurses who call. He can figure out what he is supposed to be doing. I'm turning it all back over to him. Yes, I'm here if he needs help, but this IS his disease and if he's not going to follow the rules, I'm not going to break my back or my spirit trying to force him to do so. After all, he is a grown man.

Lynn wrote:

AMEN SISTER...YOU CAN'T DO IT ALONE and HE HAS TO TAKE RESPONSIBILITY and SHOW THE WILL to fight...That is why I gave up filling my hubby's pills and calling them in several years ago because I thought gosh darn it...if I had to take that many pills I would have to fill them myself and call them in...he HAS to own his condition and that helped us...but who knows in the future, since he was ruled 100% disabled by the VA but he IS fighting for his health, getting to a gym and doing what he can to feel better...your hubby HAS to do the right things...you CAN NOT do it all...you go GIRL...teach art...do art...care, but don't lose your soul in the process. HUGS AND LOVE

so lynn, I'm taking your advice and working to make him responsible for whatever happens to him. I've been by his side 24/7 for the last 4 weeks.....it's time for me to get back to my life now!

DW

Saturday already???

Life is a blurr. It's all so busy, so frantic, so hectic. So incredibly frustrating. He stopped his oxycodine and went to 4 ES Tylenol every 4 hours. Of course, the nurse went ballistic. She called me last night and told ME to google how much he could have? Well, of course, I can find that 4G for an adult in 24 hours is the max.....but what about an adult in kidney failure? Why am I the one doing the googling? She is the RN!!! I finally quit after getting so frustrated with the whole concept of me doing her job!

The clinic nurse called yesterday and gave me the number to call nephrology. I called them and they can't see him til April 1??? I said, do you know why he needs to be seen? She said, it's a regular follow up appointment. I said, "NO!" and explained what he's been through. They had not received any faxes from the hospital, have no idea what is going on.

So I called the hospital case manager. Friday afternoon. Not in. Left a message.

Called the clinic nurse and told her what happened. She will call her liaison at the hospital, but since it's Friday afternoon, she asked me to call her back on Monday to see where we are.

I swear....once again....the burden of tracking and following up is on me.

What if I don't do it? What if we just wait until April 1 to go to nephrology? I'm certain that his kidney function will have decreased enough that he will need dialysis by then.....especially if he continues with the high does of tylenol.

The oxycodine puts him completely out. Unable to wake up to go to the bathroom. But if he can't take tylenol....what else is there? Vicadin, Darvocet....all those,make him sick to his stomach.

I taught art classes last night. I was gone for 6 hours. He failed to write down his glucose, failed to write down how much insulin he gave himself.....just didn't chart anything.

And it got me to thinking.....does he simply want to die? I cannot stay home with him 24/7. I just can't. I need to have contact with the outside world. So I'm teaching an art class one day a week. I know he does not want me to leave. Even if my sister is here. And I had told her to act like she wasn't here so we could see how he would do on his own.

I am really tired of being the only person who seems to want to take care of him. I may give it up. I may just quit. If he does go back into the hosptial, I already know that I will not do what I did this last time. I will not chart. I will not be there 24/7. And I have told him this. He knows that if he goes back into the hospital, I will not be there every step of the way. We got him home...now it is his job to keep himself at home.

Of course, he says he is not going back into the hospital. But I know the moment they tell him he has to go, he will. And honestly, I'm too tired.

So many other things going on that are so much worse than what I am dealing with and that helps me. But so sad. My sister-in-law's mom who is about my age had surgery yesterday to remove multiple brain tumors and they give her very little chance of surviving. My best friend from my childhood had a grandson born 2 days ago and he is on a ventilator and needs a heart operation that has very very little chance of survival. Her dad was in the hospital and walked out. Her mom is ill. They are both in their mid 80s and she is taking care of them. Another childhood friend is going in for surgery to have a recurring tumor removed from her spinal column. So...see, I really don't have it so bad, do I?

I think that when you can look outside what is going on in your own life and figure out that there are others who are much worse off than you are, it give some meaning to what you are doing, some purpose. I also know that no matter what happens here.....I will be ok.

DW

So dang tired!

Bless my sis - she's back helping out. Home Health Care is in place. The nurse can draw labs here and drop them off at the clinic. Pt came today and will be back Friday. Ot is coming tomorrow. They are supposed to schedule a CNA to help bathe him, but I haven't heard back so will call the nurse tomorrow and see where we are on that. Wheelchair here and ramps in place.

Schedule:

7 am, up, toilet, insulin, breakfast
8 am, walk, do exercises, then clean clothes, teeth, etc.
10 am, walk, exercises, sit in chair for 30 min, test glucose
12 noon, same as 10 am, plus lunch
2 pm, same as 10 am
4 pm, same as 10 am
6 pm, same as noon
8 pm, same as 10 am

So, we are exercising, walking, testing glucose, every 2 hours during the day.

At night, I set my alarm and wake him up to go to the bathroom at 11 pm, and 3 am.

I think I may just die. I am so tired. I catch little naps whenever he sleeps. I know we have to dothis in order to get him some strength back. The PT said today that for every day you are in a bed in a hospital, it takes 3 days to build back the muscle lost. So he was in bed for 21 days, this will take us 63 days. Two months of this schedule? Tonight, this moment, I'm not sure I will survive I'm so incredibly tired.

Some of the things you don't think about when something like this happens.....bills. I haven't even looked at one in 3 1/2 weeks. They are simply piling up on his desk. Every day I tell myself that I will start in on them "tomorrow". I think I'll really have to do it tomorrow.

But then I just don't care. Nothing matters except getting him back to some reasonable sense of health.

They cut his humulin to 9 units in the morning and 9 units at night. He is still going low a couple of times a day and stayin high way too much of the time He's just not eating what he used to eat, continuing to lose weight. We had to "train" the home health nurse about his specific type of insulin. In 40 years of nursing, she had never heard of it!!! Needless to say, I'm tired of training nurses! I should be getting paid for this!

I realized there are certain sets/groups of friends that I've forgotten to update on hubby's condition. Now I'm playing catch up with that.

I haven't had a moment to clean the house in the last month. No one's been here to get it dirty, so it's ok. But I know the cobwebs are going to grow soon!

We only have a half bath on the main floor. All that was in it was a toilet and sink. Now, I have added a storage unit over the toilet to store depends and bed pads. I bought a small shelf to put on the side under the sink to hold bathroom stuff, toothpaste, soap, etc. Got an over the door towel holder and hung a paper towel rack. We have a raised toilet seat and I found bars that fit under it that will help him get up and down. So this tiny bathroom has now been modified to serve as his "primary" bathroom. I've put 409, febreeze, windex on top of the shelf over the toilet as cleaning it has become a daily task in order to eliminate smells.

Finding adult wipes....interesting.

I did find some bathroom wet wipes that you heat in a microwave and he can bathe with them. He is just going to have to have a sponge bath tomorrow. It's been almost a week since he had a shower at the hospital.

Truly worried about his kidney function.

Need time to play...but that's going to have to wait.

All I need right now is for 5 feet of snow to fall! LOLOL!!!

He had another hard day. He tried to insert his contacts and I told him not to do it. He scratched his eye. So he's been sleeping most of the day with a patch on is eye. Why on earth does he still refuse to listen to me??? So I took his contacts away and will not give them to him for 48 hours.

My sis and I are watching a movie, trying to unwind and relax. We did get groceries today and another friend brought in a cassarole. I'm praying that I get a few hours of sleep tonight and that tomorrow is better.

DW

the little things no one tells you......

After spinal fusion surgery, you cannot lift, bend, or twist. No big deal. Unless you weigh 250 pounds and cannot reach over your belly to wipe your butt when you have a bowel movement.

A tiny little thing that EVERYONE forgot to mention! So I went online, researched, found a category titled "toilet aids" and have ordered him something that should arrive tomorrow. In the meantime......yes, I am literally wipting his butt. And nearly vomiting every single time I do it. Literally. It's a gag reflex I have had ever since my babies were born, no, if you have it, you just don't get over it. Sort of funny in so many ways, but horrible in so many other ways. Thank you occupational therapy for doing such a fabulous job of failing us in yet one more area. DUH!!!

Amazingly we got in to see his physician at 11 am yesterday. Used the walker to get down the front steps and he nearly fell into me once again. Got over to the clinic and realized that there was no way he was going to stay prone with that walker, so got him a wheelchair. You know...wait inline to check in, go to the 4th floor, wait in line to check in at the nurse's station, then the long (and I do mean long) walk to get to a room.....yep,we used a wheelchair. Neither one of us have ever used a wheelchair before so there were a few bangs getting in and out of the elevator....in and out of the room.....

yes, thank you once again to occupational therapy for not realizing that he could not walk the distance and would probably need a wheelchair!!!

His doc is an older gentleman who I like/hate. He is a generalist who doesn't belive in over-medicating....but he's just not so good at spotting what's going on. He thought hubby was anemic. Said to eat a steak tonight. I said....he's on a diabetic renal diet. Doc says, well, today we need to get him going, so feed him. OK....I will do that. I asked about a wheelchair rental and Doc said that this HMO does not cover that. He wants labs drawn which we do and then we go home.

Stopped and got him a double hamburger sandwich. Red meat! And realize that by now, he is literally so weak there is no way I am going to get him up the front steps. Called a friend who sent her hubby over to the house and we propped ourselves under each arm and got him into the front door.

I'm thinking to myself that there is no way I am going to survive this. My back is already killing me and I simply cannot support his 250 pounds!!!

Get him into bed and all settledand I called our HMO to verify the wheelchair policy. They said all I need is an order from a doc. So I called the doc back and left a message with this information and in about 30 minutes, the DME company called and said one was being delivered in 2 hours. But.....they do not provide wheelchair ramps. Called the company they recommended.....nope, this company does not rent wheelchair ramps.

Have another girlfriend who was in a car wreck and had rented ramps, so I called her to see where she got them from. She said she ended up buying them and is going to bring them down later today to let us use them!!!

During all this, hubby had taken a pain pill and gone into a deep sleep. He woke up at 5:30 and his glucose was down to 74, so he took glucose tabs and I fixed him dinner. I thought he ate quite a bit and complimented him. He asked for another pain pill and went back to sleep. At 9:00 I decided that I just couldn't stay awake any longer and crashed on the sofa.

9:30, my cell phone rings and I groggily answer it. It's the clinic - the labs just came in. He was down to 54 glucose on a blood draw at the clinic. Geez.....and the doc thought it was anemia??? You nearly have to laugh. And of course, because the doc said anemic....I didn't even think "glucose".

The nurse said the doc on call at the adjoining hospital wanted us to cut his insulin in half on the next dose. I'm thinking "NO WAY!!!" But I decided not to say a word. Then she said, "his creatinine is starting to go back up." From 2.4 to 2.6. I nearly laughed out lout. I said, "Well, just a few days ago it was 8.8, so 2.6 isn't all that bad." But she said, "no, but it is going in the wrong direction and we need to stop that."

I agree.

However.....

They had him off 4 of his meds for 3 weeks and we just started them back in. All 4 meds pull on the kidneys. Allopurinol, atenolol, terazosin, and fenofibrate.

He absolutely cannot do wthout those meds. Gout, Blood Pressure, Urin control, and cholesterol.

So what do you do? Suspend them again and risk yet another gout attack where he is in such pain that he is miserable....risk heart problem....have him peeing in his bed???

I really do not know the answer. If he has good kidney function, yet has a heart attack or stroke due to high blood pressure.....

If he is so miserably in pain that even the narcotics do not suppress the gout pain.....

If he, as an adult man, has no control over his bodily functions......

I really do not have the answer for this one.

He was so completely worn out after going to the clinic yesterday that I already know he cannot do this on a daily basis just to get labs done. Guess I will research and see if home health can come here and draw labs. He works for a major corporation which seems to have purchased some "add-on" benefits over the normal HMO packages since we did get the wheelchair covered yesterday. It sure makes it easier when I don't have to go research who provides what care.

But man! What a good lesson learning all of this now so that I know it all for my own aging process.

Of course, I emailed my sis and told her that I may well need her to come back in later this week.

I did wake him up after the call from the nurse. His glucose was 144. He still sat up and ate some pears. We both went right back to sleep.

It's now 4 am and I'm up writing my notes as the puppies woke me up. I am back to sleeping whenever I can. As long as I can. But when the thoughts keep me awake, then I have to write them down in order to let them go.

I pray that anyone who has diabetes will read this journal and keep up with what we are going through.....and realize on a daily basis that my husband is a guy who always, always said, "that will never happen to me."

everyone needs a bitch like me

at their bedside! LOL! My sister told her husband that if she was ever in the hospital, to make sure I was there all the time!

After another knock down drag out verbal brawl with yet another doctor today.....he is home! I promise you that I can give him better care than he was getting in that hospital. I walked in yet again this morning to find him in a soiled bed. I nearly lost it. He has been 5 days without dialysis. His creatinine is down to 2.4. His other labs are all borderline. They were obviously doing absolutely nothing for him whatsoever......and obviously not even "observing" him.

He fell coming up the front steps. Much weaker than he thought. So I called friends and they came and brought one of our adjustable twin beds down to the main floor. We set it up in the family room, which is open to the kitchen. I brought down the puppies crate and I will sleep on the sofa for now. He can practice steps as we have one step up to the main entrance landing. If he falls when we go to the doctors I will have to get help to come in.

I have to start calling at 7 am tomorrow to set up all the necessary appointments. He is talking that he will not do dialysis again, but I know that can change. We have to start all over with his insulin and get him in to see his endocrinologist, his nephrologist. He is back to wearing depends with a chuck across the bed at night.

But you know what.....he is home. No more charting the hospital's every move. No more sleepless nights worrying about what meds they might double dose him on. I left 6 pages of single spaced typed notes with the head nurse.....for just this past week. I told her I really hoped they would use them to make changes that might improve future patient's lives.

I don't think I mentioned the med problem. He and I figured out that they had stopped FOUR of his meds could turkey when his kidneys failed. One was the allopurinol 500 mg per day to control his gout. No wonder he had a gout attack. They stopped his terazosin (sp) which he needs due to prostrate problems....and that controls his urine. So they were charting him as incontinent.....when they stopped the med that he needs to keep him continent. Do you see the sheer stupidity of that? So we had a doc in and he agreed to restart 3 of the 4 meds. One was a beta blocker for his heart. But that doc failed to note that they had put him on a different beta blocker. I'm the only person who realized he was on TWO beta blockers. I asked the night nurse to hold it....and he said, "no, if a doctor wrote the order, we give it to him". I was wide awake all night long. When the morning nurse brought it in again, I asked her to hold it til I spoke to a doc. She went out, called the doc, who immediately discontinued it. So you know I was right once again....and they had made another mistake. I think it was huge. Double dosing a patient's beta blocker could have had is BP dropping so low he might not have revived.

needless to say, I am thrilled we are home, beyond happy that this part of our life is behind us, hoping that he will regain enough strength to do stairs...but realizng this may be our new interior decor plan! LOL!

I'm beyond exhausted and going to try to get him ready for bed next. I won't survive the night if he doesn't put that cpap machine on now!!!

dW

this infernal medical system

GEEZ! GEEZ! GEEZ!

the Nephrologist decided to give him fluid last night via IV. No staff to assist him to urinal. They tried to cath his penis, it blew up, his call button wouldn't work, so he got up out of bed. The bed alarm went off and the nurse came in. He had THREE bed changes last night.

They tried to get the staples out of his back and the didn't have the right tools An MD finally got them out today and hubby said it felt like he had a million bee stings going into his back all at once.

He is having another gout flare up in his left knee and they went ahead and started him on a prednisone burst which will increase his glucose levels. So, he and I were talking, trying to figure out why this is such a problem. I said, have they been giving you allopurinol because I haven't heard them say that. He said, no.

So we got his RN in here and she looked through his chart and he has not had allopurinol or terazosin for at least the last 4 days since he transferred to this unit.

Are they trying to kill the man? No allopurinol? Absolutely why his is having a gout attack. I cannot believe the complete moronic idiots working in this hospital.....which is supposed to be "specialized" care?????

The neprhrologist was in today and he said, "I am going to write an order that if his creatinine goes below 3.0, to pull the dialysis port tomorrow." Great news!

So a nurse comes in and tells me that there's an order to put a perma port in him tomorrow if his creatinine doesn't go below 3.0. It's been 3.3 for the last 2 days. I said, "ABSOLUTELY NOT!!!" No one discussed that with us and it will not happen.

I think I'll be spending the night tonight. I don't want him in a saturated bed again......and I certainly do not want a perma port put in a guy who has not had dialysis in 5 days.

Complete total utter quacks running this joint? ONE MORE and I will get administration involved because this is just a little bit too much as far as I'm concerned. It's just a darn good thing that I got a good night's sleep last night and have the energy to get mad!

So he is sleeping now, left knee all propped up, heating pad under it (that I brought in from home), battling a gout attack that was brought on by the hospital not giving him the medicines he is supposed to have. And yes, they have had his list from day 1.

It is no wonder people die.

I HAVE to get him home. I just have to.

DW - beyond frustrated

this amazing journey

So much happens so fast. He was transferred to the LTACF and he loves it there. They removed the fentanyl patch. Today....he was much better. Day 3 with no dialysis. May not need it any more. Kidney function back up to 15%. Great progress.

He has a gout infection going in his left knee. His glucose dropped to 34 today. But they reacted timely and treated appropriately. Nutrition on board. Endocrinology present. He is still quite weak, but he is going to come home ok.

We talked a bit today. He apologized for his behavior the other day. We talked a little about the future. About how to handle this the next time, and with his poor kidney function, we all know there will be a next time. He's just been given a reprieve for now. He had visitors today and I think that did him a world of good.

He is so weak. Can barely lift himself up off the bed. c.diff still going. Hoping they can get that under control soon. He got up and walked to the bathroom today using a walker. Huge progress!

I'm exhausted tonight, going to bed. But it's such a good "tired" feeling! I really believe he's going to make it this time.

DW

and after all that....

I went in this morning and he was in a fighting, ranting, raging mood!!! Wow! Completely took me by surprise. He point blank lied to the surgeon, who decided to write a discharge home order! The nurses got the order and in 2 minutes, the surgeon was back in the room with 2 nurses, a social worker and a case manager! I guess he told the surgeon that he took a shower yesterday. The nurse said, yes, but his wife was in there trying to hold him up, bath him....it took her over an hour. He was light-headed and had to get right back to bed.

He told the surgeon he had eaten breakfast. He failed to tell him he ate 2 teaspoons of oatmeal, 4 teaspoons of yogurt, and didn't even attempt to drink any of the liquids on his tray.

I think everyone learned something today! That this guy is good at presenting a wonderful image. Mind you, he did not "lie". He did take a shower. He did eat breakfast.

So after an hour, we all agreed that he is going to a long term acute care facility. The doctor said that he will not go until his nutrition iv is done, and that will not be done until he eats and drinks at least half of each item on his tray.

I was beside myself. He cannot get himself up out of bed. He cannot hit a urinal. He can barely get up from a chair if he gets to it. But he had a surgeon convinced that he could go home?????

Then we had another 1 hour discussion about WHERE he was going to go. He didn't want to stay downtown. He wanted to go closer to home. Problem is, his HMO does not have a residential facility that has dialysis on site. We would have to put him in an ambulance, take him to dialysis, ambulance him back to the facility and each step we would have a co-pay for. He argued and argued about each facility and he would not believe me that they did not have dialysis. The he said, well I will go to this place and mentioned the place close to our home that does dialysis. I said, "sweetie, that place does not offer residential care. You need to go somewhere where they can help you get to the point where you can walk, do stairs, take your own shower...." I had done the research, but he did not believe me.

We finally all agreed that he was going to the long term acute care facility in the hospital where he is and everyone left.

He slept. And after an hour, I asked him if he wanted to get up and sit in the chair for a bit. He said yes, so I asked him to call the nurse. He said that he had been getting up by himself all night long and didn't need the nurse. Now tell me, why did I ever buy into that lie? But I did. I actually stood there and made him get up on his own, use the walker, get to the chair. He was literally trembling as he tried to lift himself up off the bed. Sitting in the chair, I asked him if he wanted to eat something else. No, he didn't. I asked him how he was going to get nutrition into him if he didn't eat? He said I ate enough, I ate half a bowl of oatmeal and all my yogurt. I said, No, you ate 2 teaspoons of oatmeal and 4 teaspoons of yogurt. Oh my gosh, he got so mad at me. He stood up in a complete rage and glared at me with pure hatred. I just stood frozen in my spot. I didn't even realize that my sister went out to the desk and got a nurse.

The nurse came in (love her to pieces!) and started doing a number on him for being out of bed without calling. That's when I realized he had point blank lied to me. I left the room and went down to the lounge. She came down a little bit later. She's a good negotiator. She said that he was in a rage because he felt like everyone was treating him like a child. She told him it was because he was acting like one. She basically sent me home for the day. Told me to take his phone and turn mine off. Which I did. She really read him the riot act. Told him that he would not get out of his bed without calling the nurse. She is going to put an alarm on his bed tonight. She told him that he would get up to his chair 3 times a day for meals. That he would eat half of everything on his tray and that she was putting a calorie count in place. She told him that he will walk 3 times a day and sit in his chair for at least 30 minutes each time he is up.

I came home and my sis and I have been watching movies and eating chocolate this afternoon. Just what I needed. It is so sad that I cannot call to see how he is doing. But I understand that he needs this. He needs to find out just how much I am worth to him. And if I walk in there tomorrow and he gets pissy, I am supposed to leave again.

So yesterday was true love. Today is tough love. And I totally understand that they go hand in hand. He cannot say things to me like he did today. He cannot yell at me. He cannot treat me with anything but respect. He has to do that for everyone involved with him. And I understand that his anger is not about me, he is simply directing it towards me. He needs to vent and I hope they get a therapist in there so he has someone to vent to. And I know that he is angry about going to a long term acute care facility. A couple of people have used the term "nursing home".....and he is NOT going to be happy over there. It's not new, modern looking. But literaly, it is the only place in this area that offers on-site dialysis. We just don't have options.

What a day. I'm going back to watching stupid chick flicks so I don't have to think. I need a day off. Tomorrow has to be better. It simply cannot be worse.

DW

Love

I went back to the hospital at 12:30 am after 2 hours of sleep.

I sat by his bed and held his hand while the suppositories kicked in.

I sat by his bed during 4 1/2 hours of dialysis so that when he looked up, he saw my smile, and he wasn't disoriented.

I laid my head on the bedrail and held his hand while he dozed, back in his room.

I got into the shower with him and bathed him while he sat on a chair tethered to his iv pole.

I kissed his forehead and came home at 5 pm after holding his hand for more than 16 hours.

That, is love.

De

in the pits of dispair.....

I got in there at 6:30 am. And found him in a saturated bed. I do not know if it was a burst ice bag.....or urine. I don't know how long he had been there. He was upset. He had pressed the call button and they said they would come in. He didn't know how long that had been. My sister went out to the desk and 3 nurses were in there immediatly. God only knows what she said to them. I was mad. I yelled. Then I said nothing.

When the surgeon came in, I took him quietly aside and told him exactly how I had found my husband. He looked right into my eyes and said, "what did you say?" and I repeated myself in a very quiet, calm voice and added....I'm quite concerned about the safety of his incisions.

If I could draw a cartoon of heads rolling - I have a whole new vision. That surgeon started shouting orders faster than I could think! It was just unreal. I have never seen so many people in one hospital room ever. They pur waterproof dressings and sealed every single incision on hubby. The brought in a special air bed for better comfort. The brought in 2 urinals, new ice bags, special hand cleaner and gloves for me as I'm allergic to the standard ones. I mean in 20 minutes everything I have requested this past week was in place plus more!

After they all left, I sat there in the chair next to him, holding his hand, my head resting on the bedrail, and cried my heart out. I simply do not understand how any hostpital today can leave a grown man in that condition. Complete, utter, sorrow and prayer that he will not remember that.

When they did the nurses report, the night nurse said he had been incontinent. I looked at her and I said where is his urinal? She looked around and saw that it was out of his reach. I said, "you chart that as well. He is NOT incontinent, he was incapable of reaching his urinal and that is YOUR fault."

By 11 am, he was more than exhausted and I was beyond drained. I remember praying to God to give me the strength to make it through one more moment, to dry my eyes, and to turn me back into his great cheerleader. Somehow, I managed to live through this day.

He was still pumping too much gunk out of his stomach this morning. The surgeon actually yelled that there was not going to be any discharge until his ileus was completely healed. I know hospitals are gung ho on counting days and yesterday, they were saying that he would be transfered to a Long Term Acute Care Hospital. But that didn't happen. I think the LACH is where they tell you dialysis is permanent.

Bless the surgeon's heart I know how medical staff are required to be positive and hopeful, and can't tell you the truth. The surgeon looked right at him and said, "You have the look of someone who's kidneys have died. You have that ashen look."

Finality. Past tense. Kidneys are dead. Dialysis is permanent. I can start to wrap my head around this. While the nephrologist comes in and still says, "well, we'll see what the creatinine levels are tomorrow, but it will probably be a dialysis day". I can start to know that it will now be every other day. I think the LACH is where they tell you that it's permanent. Where they say the words "End Stage Renal Disease", Where you get counseling. Where you make life altering decisions.

But he just has to get well before he goes there.

They clamped off the NG tube about 11 am and started with apple juice. Then beef broth. He has managed to keep them down all day long....but still absolutely no output. I will see how distended his stomach is in the morning. It's possible that after 12 days NPO that his body will simply absorb the first few sips. Only time will tell. He savored every sip. He was beyond adorable. I cannot wrap my head around the concept of not eating for 12 days. Can you? He is probably down about 30 pounds. If he can sit in the shower tomorrow, I will be thrilled. OK, I can't wrap my head around no shower in 12 days either!

My sis thought he was doing much better today. I am doing much worse tonight. I think "dispair" is the word that comes to mind. His speech is so slurred. He is definitely having problems with memory, time, events. And I know I am exhausted, running on fumes tonight.

On the bright side, my art pals filled my refrigerator today with quick easy grab-n-go type food. We are set for the next few days and can skip the grocery store. I love my friends - so amazing!

DW

That dang roller coaster...

And it's not even the sugar one!! But related. Yesterday, they tried dialysis, nd he clotted. Wanted to send him to get a tunneled port, but he had been on blood thinners. So they did the port this morning, and he's in dialysis now.

How do you stand it? How do you sit and watch blood coming out and going back in? Can he do this? I know he's going to be mad at me when we get home. I know he has always said he would never do dialysis. I know, I know, I know. But today, that all goes on the backl burner as I play cheerleader once again to get him motivated to get up and walk so he can come home.

I got 12 1/2 hours ofnsleep last night. He called and woke me up. The night nurse took him off ice chips and he was miserable. By the time I got here, he was off getting the new port in. I met up with him in dialysis. After I had a conversation with the floor nurse. Explained to her that they can do anythingnthey want, but when he is this miserable, they HAVE to do something. She got him ice chips stat!!!

Why do I have to do these battles??? Why can't they use an ounce of common sense?

He has c.diff. And I have to wash my hands all the time, put on gown and gloves and do it over if I move. My hands have had a reaction to the soap and my arms are literally burning from the tips of my fingers up to my elbows. They are trying to find me different soap and gloves today. At least they are trying.

Today is another day of tears. He is improving. Truly. But I just hurt so bad for the pain he is in. I ache for the choices we have to make in the days to come. He is begging for food and he is still npo on a stomach pump, still has an ileum, stomach is distending again. And Theresa always the threat of uremia. His WBC continutemto climb. No bowel movement in about 36 hours. It simpl wears on the soul. Probably hardest is the fact that I have to stay chin up around him. So I continue to function 1 step at a time.

Dw

my therapy

Coming home and writing all my thoughts and fears here. So that he will never know. My personal, heartfelt journal of the process of grief, hope, loss, faith and so much more.

Thank you for your comments. It's ineresting to me how God is guiding me through this process, one step at a time. I could not make it without my faith. I would be lost without my trust in Him. I ask Him daily to grab my hand and keep me afloat and somehow, at the end of the day, here I am!

The gave him a respite today - no dialysis. We spoke to the nephrologist quite a long time. We agreed to just take this day by day. So it breaks my heart that originally, he was supposed to be discharged tomorrow. I don't think we are close to that just yet. I will be in at 7 am to see what his creatinine is and I will know from the numbers. If it is above 6.8, then he will have dialysis. If it's at 6.7, then they will look at other labs and make the call.

The doc promised to talk to both of us before they put in a different port.

Hubby is still hallucinating and we've decided that's from the fentanyl. Pretty strong stuff. He agreed it's better to stay on it and hallucinate, than to deal with the pain.

NG tube/pump is a huge problem. 7 days with no nutrition. 2 days on iv nutrition. Starting to concern me. They did an xray tonight and I left before the results came in. When he went to xray, he passed out. The hospital has a "rapid response" and no one called for that, so heads were rolling. If they have to do surgery on his stomach - I doubt he would survive. I'll leave that problem for tomorrow. But he is pumping out way too much stuff from his stomach - horrible green bile. Again, I want to get in there early to meet with the doctors once again.

He hasn't even had his back brace on yet because his stomach is so distended. Something simply isn't working inside. And he knows it. The more he wakes up, the more he realizes whats going on, the more pain he feels, the more he hits the pain pump which increases the hallucinations.

With the cdiff bacteria going on, they now think he may have a yeast infection in his mouth. I tell you, I just don't know what else can go on with the poor guy.

I am shutting down and I know enough to tell my sister. I'm closing off to the rest of the world. And I think this is completely natural I have to insulate myself to protect my heart so that I can be strong for him. Sad, I'm the kind of person that if you are sympathetic around me, then I will break down and cry. And that has to wait until later. I have to go in there and be strong for him. I have to do battle, because he can't. I have to research and study so I know what questions to ask.....and today I asked away!

I don't think he will ever agree to a dialysis diet. I just don't see him restricting his intake that much. I honestly don't see him going to sit 3 days a week for 5 days. I had always assumed we would do home dialysis.....but now that I've truly had it all explained to me....I don't think he would want to do that either. I'm sure we will figure it out when we have too.

My phone call tree has turned into an email tree, so today, I just sat and held his hand. He said it made him feel better. Every time he opened his eyes, I was right there. He is just so worn out. So completely exhausted. So I fear what tomorrow might bring if they have him do another dialysis treatment.

I'm too tired to think about what else went on today. Going to try and get some sleep. Here's the problem with that. I wish I could take a pill and get a good nights sleep. But I can't in the event the hospital calls and I have to get back down there.

DW

Day 4 dialysis

Whew. I truly wonder if I will suvive this. I'm researching like crazy, trying to absorb as much as I can. Planning to see if the hospital has any education on dialysis they can offer me. I need help!

Yesterday, after his 4th dialysis in 4 days, I realized that all of his hallucinations are most likely from the toxins being replaced in his brain's blood supply. He said I was wearing a plastic bag over my head and that there were plastic bags floating in the sky. Then he said there was glitter on the ceiling and that it was blue (not white accousitcal tiles!)

Just before that, he was completely beside himself saying that he just wanted to die. He didn't want to continue dialysis. He just wanted to die. He wanted to pull everything out of him. He was crying. I tried my best to be his cheerleader. Telling him that he had 3 little grandchildren that needed their grandpa. Telling him that if he died, it would surely kill his mother, so he had to stay alive so I didn't have to tell her anything. I pulled out all the stops and he finally settled down. But I was so drained, I just thought I might die myself.

I know that I also have to ask for therapy to come in today for him. Not sure he will understand or comprehend anything, but I have to ask.

On the upside, he is out of ICU and into a private room. Still under infectious control. No status on the c.diff yet. I think he has to be on iv flagyl for 4 days...but need to ask that question again today. Just way too much going on for me to remember all of it.

They were talking yesterday about putting a permanent port in for dialysis. I need to have it written in his orders that we need to discuss this first, since he has always said that he would not do dialysis.....and since he wants to stop and die after each treatment.

I have to tell you that it simply breaks my heart. The most devasting thing on earth is to have the person you love, holding your hand, saying that he wants to die. And saying it over and over in such a terrible terrific moaning voice. He truly just wanted to die.

Once we got him into his room last night, he started telling me to leave. He wanted me to take everything and move out of the house and leave while I could. Of course, I made "light" of it and told him that I hadn't found the right "box under a bridge" so I had to stay put. :o)

He has absolutely no idea what I have been through the last 8 days. I know my readers know. But he doesn't. The utter heartbreak. Crying streaming tears in sheer agony to God to give me strength to make it through just one more hour of the literal smell of death coming up through his body. Knowing that having worked in the medical field in the past, I am fully aware of what that smell is.

I thought I knew what the roller coaster ride was. But this is so much more than I have ever experienced with him. One moment, bracing for death, the next, celebrating such a tiny victory as him squeezing my fingers. Going from him being blind to having his vision back. Listening to him moaning that he just wants to die - to talking about where we are going on our next vacation. It seems to go from the lowest low to a rather positive high, just to sink so eternally low once again. It is aging me. Being a constant cheerleader is aging me. I have had my moments when I had to flee his room and find a quiet place to cry my tears of heartache and dispair.....wipe my eyes and go back in with my "happy face" shining bright. I just have to be a rock in front of him. But this rock has it's moments when it shatters to nothing but grains of sand and then has to rebuild into another rock. It's so hard.

I'm making adjustments. I'm crying at night when I'm home alone in our bedroom. The process of crying seems to wear me out and allow me to sleep so soundly. So that's good. Today, I need to get all my notes into one place, get them in order, edit them, review them. I've asked my sister (bless her soul, she has been with me 24/7 since this started) to start taking notes as well. Just because I find I'm getting confused as to what day he did/said what.

Yesterday he walked 8 steps and then started to lose his vision. No one knows why. Before that, when he sat up in a chair, he started to go blind again. Of course, he panics. I would, too! But when he panics, his heart rate shoots up and everything just goes out of kelter. His BP is not dropping, so no one know what's going on with his vision.

Thank you for all of your comments. While I'm not reposting them and making my comments back, just know that your support means the world to me. I know that each of my readers either has experienced what we are going through, or knows that they may one day soon go through this journey. There is absolutely no way to prepare for this. If you know the steps in the grief process, I do think that eliminates fome of the surprise of feelings that happen. When I get mad at a nurse....I can stop and ask myself if it's just the "anger" phase, or did the nurse really do something that justified my anger. Things like that help. I've been able to understand shock so much better - I just want to walk away from everything. And it seems that every single day, I am at different levels of the grief process on different issues. And just being able to pinpoint where I am truly helps. So if you haven't been to a grief training class - find one.

The other thing I have realized this week is that you cannot counsel others when you give them bad news. When I'm in the "anger" phase....that's just not a good time for me to inform anyone else that he's on dialysis. Because they are going to be in denial. And if they deny his condition when I'm angry about it.....well you can just imagine!

So I have picked one person from each "group" as my contact. My sister for my family. His brother for his family. One guy from his office. One artist from my pals. Those 4 people get a phone call or an email (usually email) from me each day. I have asked everyone else in each group to contact that person for updates. I had taken over 100 phone calls from friends and family wanting updates on him. This system has truly helped. And while his parents are livid that they have to go to his brother for updates, it has eliminated me having to listen to them cry and carry on - something I just could not do right now. My husband will have to come to understand that later on. I also realize that this "system" is going to need to be solidified in the near future as even talking to 4 people on a daily basis can be quite draining. And my sister can't stay with me forever. She needs to go home and take care of her husband. But for the moment, this has helped me immensely.

Time to get up and get dressed and get to the hospital. Posting my thoughts here truly helps!

DW

uremia

It's amazing how calm I am when I KNOW what it is! No, the idiot doctors did not tell me, but I simply entered all the things that are going on and it's uremia. And he's probably had it since Tuesday. Drowsy, sleepy, difficult to arouse them from sleep, inability to think clearly, memary impaired, disoriented, confused, slurred speech, no speach, twitches, shaking.

That or dialysis disequillibrium: nausea, emesis, blurred vision, muscular twitching, disorientation, tremors......

Either way, I will ask the doctors today because I just do so much better having an answer. And I understand their unwillingness to make a diagnosis of either of these in ICU. They did back-to-back dialysis, less than 12 hours apart. Pulled off 6 liters of fluid, in addition to the 2800cc that was pumped from his stomach yesterday.

I have absolutely no idea what today will bring. I could not sleep last night so I was up researching all night long. My adrenaline has kicked in again. I'll be fine! Gotta love those adrenaline rushes!

My girlfriends came over and brought comfort food. They actually googled it. Mac & Cheese and mashed potatoes. Is that a hoot? Choc chip cookies, chicken, corn....they did me good, with enough to keep in comfort for several days.

I finally realized yesterday....or finally "got it" that my friends NEED to help. They so desparately want to do something, so starting today, I will ask. I have someone bringing their puppy over for playtime with our puppies this week. Someone taking care of getting rid of the snow. Planning a craft evening with art pals.

So uremia. Pretty serious, huh? I know. I know he can bound back from it. I know he can die from it. I know he may be on permanent dialysis - which he has said repeatedly that he will not do. I know that if he doesn't, he can come home and be dead in a few days, weeks or months. I did more research last night than I've done in ages, but I am so much better prepared. Knowing the process of ESRD....that they go into a coma, not quite so bad as anything he's been through this week.

Today, my goal is to just get through today. Pretty simple. Keeps me from thinking about the future. Keeps me from thinking about the past. So many people all around the world are praying for him. I've made his brother the contact for his parents so I don't have to talk to them - huge relief! I have picked one of his employees for that group, and my sister that is here with me is taking care of the rest of the family updates

I have an aunt who is a critical care surgery RN and she called me last night and went over everything. Said that they might put him on a Bipap machine to force oxygen into him. I so appreciate her letting me know. Again, education is so much better than surprises!

I still believe he can turn it all around. He could get out of ICU even today! As impossible as that sounds, he's done it in the past. When I had the least hope....he turned things completely around.

Finally, I know how difficult this is for those who fear they will be going through it in the near/distant future. But on the other hand, I hope there are those reading my journal that think this will never happen to them. You are the person my husband was up until about 5 years ago He was in denial the first 25 years of his disease. This would NEVER happen to HIM.

But it did. And it is. Again, I don't think it has anything to do with how well you take care of yourself. It has more to do with how old you are, the natural aging process of the body, how long the disease has been in your system, what additional issues you have.....it just all adds up. And while nutrition, exercise and good glucose control may prolong it.....chances are it will still happen.

Today's battle will be this. The neurosurgeon claims he needs high levels of protien and no carbs in order to get his incisions to heal.
Endocrinology says he needs 45 carbs per meal for his diabetes.
Dialysis says he needs no protien.

I think I need to schedule a joint meeting with all 3 entities this week. That should be a fun one! :o)

DW

12 hours of sleep

You would think t would help. But I have cried so much today. I came in and he is now on infectious care. I have to gown up to see him.
2nd dialysis today
Heartburn
Nauseated
Vomiting in bed all over himself
NG tube back in and they have pumped out 2800cc - yes, you read that right- in the last 4 hours.
Internal bleeding
Oxygen back up to 6 ltr
Colostomy and catheter
I have had to leave a few times just to compose myself. Know that I need to walk away and go home, but that scares me.

I love him so much

I walked in and he put his arm up and I said, what do you need? He whispered, hold me. I wrapped both arms around his arm and said again, what do you need? He whispered, I just want you to hold me. So I sat for 1 1/2 hours just holding his hand.

My heart is breaking.

I'm going home to watch the hallmark channel and sob my heart out. My girlfriends are bringing comfort food. I pray tomorrow is better. I know this guy and have seen him turn things around before so I haven't given up hope yet

Dw

Complete shut down

His kidneys have stopped. He is back in "mini" surgery having a port put in for dialysis. He has always said that he would never agree to dialysis, but I talked to him yesterday and got him to agree. I told him that if he refuses it in the hospital, he will never walk out alive. I got the nephrologist to agree to only put in a temporary port - good for one week at most.

I had to sign the consent form. That's how out of it he is. Me. I had to sign consent for my husband to go on dialysis - which we both consider to be life support - and we both have DNRs.

But I also know that if he refused, he will go from here to a nursing home and never get out. I want him home so he can make all the decisions.

And I have completely shut down. Nothing matters. Tomorrow doesn't count. Hope doesn't count. Thinking about yesterday isn't possible. I feel like I am in a shell and the shell only exists for this moment only. So I know it's a form of shock and I'm very aware of what I'm going through and I'm simply allowing myself to take the steps I need to get from this one minute to this one minute.

He has a wonderful team of nurses today. I love the endocrinologist here and am so pleased with the nephrologist. The critical care doctor is avoiding me like the plague, and I'm certainly ok with that! My sis is here by my side making sure that I eat, take my pills, walk. I think she wants me to nominate her for saint-hood! She is taking care of everything at the house.

I don't know when they will do the dialysis, I'm hoping farily soon after they get the port in. OK, so I was explaining to someone else, he has had a port in his upper right chest since Monday. He has 3 IV ports in his right arm and 1 in his left arm. They still draw blood directly from his left arm for labs and still inject his insulin directly into his stomach with needles. I just don't know how much more one human body can take.....and now dialysis.

If it goes well and he has no adverse reactions, I will go home and sleep in as long as I want tomorrow before coming back in here.

I have been sitting here just wondering what diabetics think. I have heard so many say, "I take good care of myself. Nothing will happen to me. I'm compliant. I'll never let it get that bad." And I know my husband said that all through his 20s and 30s. But as a person ages and other parts of the body start to fail.....as years and years of having this disease start to take their toll on the body....how can anyone say "it won't happen to me."? My heart aches for all the diabetics who are going to be in my husband's spot and have no clue what is coming at them or how hard it will hit them. But my heart weeps for all the spouses that will go through this.

My brother-in-law was healthy as could be and died in his sleep of a heart attack at the age of 55. We should all be that lucky.

No one should suffer like my husband is suffering this week.

DW

Beyond awful

One of these days I will assemble all my notes. Right now they are on my laptop, ipad, iphone and in emails. I'll put together a timeline. But just know this has been my absolute worst nightmare.

Example of just one conversation this afternoon. Hubby is in ICU. He cannot see. His kidneys are functiong at 13%. And the critical care MD is arguing with me about his insulin. I swear! I did not back down. I finally said, "you sound like you are upset with me." he said, "I feel like I am being attacked" I said, "I'm no where near attacking you - I'm trying to get you to understand why you should not switch him from Humulin R U500 to novolog. But you do what you have to do. His endocrinologist said that if anyone wanted to switch him off Humulin, they were to call her." and I gave him her number.

Then I pulled out my gigantic spread sheet and showed him hubby's past tracking of labs. You cannot fathom the change in this doctor. I think he realized that I know what I'm talking about. He called this hospitals endocrinologist who just now left the room telling me they were NOT going to take him off his Humulin!!!

So why did the critical care MD ever even have the argument with me? Why didn't he simply listen to my concerns, then call the endo?

And that is what my entire week has been like.

To top it all off, I woke up to blood in my urine this morning! Can you even believe that? I'm sure I have a kidney infection from sitting in surgery waiting all week long. Fortunately, my HMO has a clinic about 5 blocks from here and while it's not where I go, my doctor is amazing and she called an RX there and didn't make me go see her (an hour from here). I'm flushing my system with diet 7 up and cranberry juice and am already doing so much better. But did I need this? NO!!!

As you can see, I am stressed out and my body is starting to show it. When I told my doctor everything that was going on, she said, "and all you have is blood in your urine???" That made me laugh!

Hubby is running a temp of 103.3 now. So I will stay with him awhile longer. Been an awfully long day and I know I need to get some rest, but I'm hoping to meet with the hospital nephrologist because his kidney functions are so low.

I keep telling myself it can't get any worse.....yet it does.

DW

And the nightmare begins.....

Those who read me, know this is my place to vent. So that when I'm with hubby, I can be supportive and encouraging. So I have to vent about this hospital and staff, because in a couple hours, I will be there, and then I have to be a cheerleader!

My sister is with me. Thank God! But on the drive home last night she said, "I could never be like you." I said, what do you mean? She said, "you just coo and coddle him, you say all these really sweet things to him to make him feel better. I'd be like 'get over it' if that was my husband laying in bed!"

Just had to laugh at her! But it might let you know that when I'm in front of others, I'm really a good wife. This is my place to vent and get it out of my system so no one else hears it.

But that hospital might just hear it today!

He was in recovery for 3 hours. I knew that wasn't good. He finally got to his room and when they let me in to see him - he couldn't stand. He has no feeling in his left leg from the knee down. He can move his foot. However, he says he's not moving it that it's involuntary movements. The nurse said it is swelling from the surgery and just temporary. But let me tell you, that man was scared to death.

I actually had to excuse myself for a moment and go out into the hall and take several deep breaths. What do you do when your husband is so scared, and you are, too, but you have to be brave in front of him?

I went back in and immediately just started repeating to him over and over that it was just swelling and that it would go away, but that it might take a week or two. I rubbed his hands and his arm, rubbed his forehead, cooed sweet nothings to him until he finally started to settle down about an hour later.

He was having trouble breathing. He would doze off and simply not breathe. I don't know why they did not put him in ICU for the night, but they didn't. The floor nurse was just horrible. I mean truly. No eye contact. No personality at all. I handed her his bottle of humulin R-U500 and she said, yes, we are handling this. I said, what is his glucose? She didn't know! So she got a meter and took it. It was 320. Now, mind you, he had not had anything to eat in the past 24 hours. So I asked what insulin they had given him and she said 5 cc Novulin at 5 pm. I'm sure the look I gave her was horrified....but then, remember, she made no eye contact with me - so she didn't see it. Even hubby told her that was way too low. She kept saying it was the same as Humulin R.

I got home around midnight and crashed. Then woke straight up in bed at 3:30 am realizing that the hospital staff was reading it just as humulin r, not adding the U500 to the end of it. So I printed out his RX, printed out the description of the drug, made up a huge print sign with all his RXs to take and tape to his wall, then called to check in on him at 5:30 am. A different nurse answered (thank goodness!) and said that his heart rate has been elevetated - around 125 to 150 all night long. So he is struggling. I asked what his glucose was and she said she took it at 2 am and it was 320 again. So I took the time to explain to her that I thought there had been a mistake in his meds. I explained the difference between regular and U500. She looked in his chart and said that the doctor had reduced his dose from 32 to 16 units in the morning and from 20 to 10 units at night. I said, "why would you reduce it if his glucose is 320?" She said she did not know.

I asked when the doctors would make their rounds - she did not know that. So I asked if when I come in today, could I speak with the doctor on call? Of course, she said that I can. So I will.

I looked up the patient advocacy number for this hospital and will call it if I don't get positive results with the doctor. Hubby cannot stay at 320. He just can't! And I'm certain no one at this hospital understands humulin R-U500. On my list of meds, I've printed his endo's name and phone number along with his PCPs contact information. I'm taking my own scotch tape! LOL!!!

Since I sort of want him alive and in working order, I will take on the role of advocate once again. Much as I do not want to, I will do it. I absolutely hate that this burden has been put on me. Doesn't have a thing to do with how much I truly love and adore this man. This is NOT something that I signed up for. But will willingly take on the role in order to help him through this.

Honesly, I do not know how he will survive tomorrows operation. It absolutely killed me to watch him last night. He was in so much pain, so scared about not feeling his left leg, and a bit in a delima due to his high glucose - which they obviously allowed to remain high all night long.

At midnight, I had to leave. I was on the verge of collapse and to make matters worse - our weather is not cooperating whatsoever. I have never divulged where we live, but needless to say, most of the US is being consumed by a winter blizzard of which we are not exempt. Driving in such inclimate weather added an unneeded stress factor and we are facing it again this morning. It's only an hour to the hospital on a good day. Go figure that the worst of it hits when he has surgery scheduled! Well, OK, I'm hoping the worst is over!

I am keeping notes, but just realized that I need to start keeping even better notes as he may well not survive tomorrow's surgery, based on how they are handling his insulin. How truly, utterly, completely sad is it that a family member knows more about his insulin than anyone on the hospital staff can figure out?

I am so not prepared for today, but I will manage no matter what. I'm going in on 3 1/2 hours of sleep - knowing that will have me on edge. But I cannot sleep at this point and who know what time I will need to be there in the morning because surgery starts at 8:30 am.

May you never ever have to go through this with your loved ones - diabetic or not.

DW