Friday, March 04, 2011

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

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 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)


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.


Sunday, February 27, 2011

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 CAN NOT do it go GIRL...teach, 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's time for me to get back to my life now!