Saturday, March 06, 2010

The insensitivity of others

Everyone came today to visit my husband. I almost had to laugh outloud. His son did not call him on his birthday. Did not bother to call him on Father's Day, but now claims he is going to be in pre-op with him for surgery. I told him they had said I would be the only one allowed in pre-op. He said, "I don't care!"

This son has 2 kids. My husband adores them. The youngest one is 3 years old. Before today, he had spent 6 hours with her in her entire life. We are not invited to anything because hubby's ex-wife gets invited to all the family functions and her husband has said he will not be in the same room with us. He has never met us. Not once. So he made that choice from whatever hubby's ex-wife told him. We are excluded from everything.

His daughter came today. She said, "you got a new refrigerator!" I said, "Yes, 3 years ago!" So it has been that long since she has come to visit him. She lives 2 hours away. But at least she does remember to call on the important dates.

They seem to have no use for him, no desire to be with him, yet now that he is going in for surgery.....they are here.

His parents have not been to visit him at his home since 1982. They are insisting on driving up for surgery. I am still hoping he can talk them out of it. They do not need to see him after surgery -he is going to have so many IVs in him - and they are not in the best of health as it is.

Now, don't misunderstand me. It's not that I don't want them all to surround him with their love and support - it's just that one has to ask, where have they been the last 12 years? Why haven't they surrounded him with their love and support prior to this? Is it just for show? Is it a sense of "duty"?

I feel certain the only reason his parents are making the drive up is to be the center of attention. In all the years I have known them, it has been their single goal. And if it doesn't happen, they will make such a scene, that it does happen. She has trigeminal neuralgia and will literally go into a fit of schrill screams when the "pain" becomes more than she can handle. Exactly what we need in an ICU waiting room! He is diabetic and will go low at the drop of a pin and have to go to ER. We need that in ICU as well!

When his own father had a triple bypass, he had to fly to be with him because his mom wouldn't make the 3 hour drive to be with him. Yet she will take 3 days to drive here to be with my husband? Makes absolutely no sense to me. Unless it really is that she wants to make a scene.

So I am calling in the troops! 2 of my sisters, a brother-in-law and my brother will all be here to assist and help with his family so I can focus on being with him. Hubby and I have talked it all out and he agrees that I don't need to be spending time getting food, water, etc. for his family or trying to make them comfortable, my family can do all that for me. And they will do it gladly. They absolutely adore hubby, call him all the time, include him in everything.

I wish family would simply be consistent in their relationships. If you never come visit him.....don't make a show and be here for surgery like this. If you want to be included in surgery, then include him in all your other activities. Seems pretty simple to me.

Guess I just needed to vent today.


Friday, March 05, 2010

Pre op visit

OK, I don't think either one of us were prepared for this. We met with a nurse this afternoon and sat as she explained what was going to happen. Starting the night before surgery - going thru til he comes home. She was graphic. She was explicit. She didn't leave out a single detail. We were there for about 1 1/2 hours. I can't even put it all down because I will get sick to my stomach again.

Yes - again! About an hour after we left her office, my husband got terribly ill. He said he didn't know what was going on, he just felt horribly sick to his stomach. About 10 minutes later I had the same wave come over me and as we talked about it, we realized it was a combination of nerves, and graphic images of what she had been talking about. We both had to lay down for a bit. AFter we had supper, we were a whole lot better.

Just the thought of a large needle going into his jugular vein....or wires coming out of his heart to hook him up to a pacemaker should arythmia set in.....and neither one of us handle hosptials very well to start out with.

I would have to say that we are probably just a little shell shocked this evening. The really good thing is that for the next 5 days - no doctors visits or labs....we don't have to look at anyone or do anything related to medical stuff. My sister and her husband came down tonight and will be here thru the weekend. The grandkids will be here tomorrow. It will be a good weekend and it will go past quickly.

He is havinga whole lot of lows today and I'm not happy about them. Nothing seems to be bringing them up. OK, peanut butter - nothing is bringing him up. So I suggested that he try to get ahold of someone tomorrow. It does worry me that he will go too low in the middle of the night.

So,other than being a nervous wreck and feeling like I want to puke my guts out....we're doing just fine! LOL!


Wednesday, March 03, 2010

How do you do it?

Pam wrote:

how do you do it?? How can you be the "rock" of it all, the cheerleader, care giver etc, everything? I am facing a similar situtation and sometimes I NEED to be the one being taken care of. I have 4 kids under 3yrs and a very non compliant husband. Dealing with the every day stress of 4 kids, i have to treat him like my 5th, and i want to say "grow up"!!! Thanks for all of your stories and information, it helps me deal with my own CRAP!!!

I sat here thinking about this. Well, I probably couldn't do a think if I had 4 kids! I think they would come first in my life.

But here's what I think:

1. Surround yourself with a huge network of other women who can support you, help you out, lift you up.
2. Find some way to take 30 minutes for yourself every single day. Today, I walked to the grocery store and on the way home, I sat on a bench overlooking a small pond for about 10 minutes. It got me out of the house, away from everything. I could clear my head.
3. Find something in your life that is just for you. I have my art. It is wonderful therapy. It grounds me. I find that when you slip over into the right side of the brain, it gives the left side time to heal.
4. Pray. If you are not religious, then meditate. 5 minutes at a time. Focus. Tune out the rest of the world.
5. Write. Start a blog. If you write it all down, then you don't have to dwell on it. I put my anger here. I put my frustrations here. I take it all out in the blog....and then I can walk away and simply forget about it. If I need to "remember" - I just come back here.
6. Know that you can stay or leave. You have options. Really - it's like any other marriage. Diabetes does make it more difficult. But we all have options. Get counseling, get therapy. But bottom line is that you have a choice. And you can change your mind at any time. That "freedom" is what gets me through the worst hours. It's what makes me happiest during our good hours. I'm still here. But knowing that it is my choice is what makes it easier for me.

I think that's how I get through every day. Just one step at a time.

So, updates for today. It was a doozie! We went through the list of things to prepare for in the event he were not to survive surgery. Gruesome. Horrible. Awful. Tears. Hugs. Sweetness. Sorrow. Horrible almost unbearable grief. But it is a process that we had to go through and now, I know what his wishes are and we both agreed that we are comfortable going forward.

There has been an overnight change in him. Almost like there was an old-fashioned revival and he walked down the aisle. I will take it gladly! He is eating right. He is testing his sugars. He is doing exactly what the doctors are telling him to do. Is it too late? Only time will tell. He did more labs today. (He's had more labs in the last 3 weeks than in the past 4 years!) The results were good and bad. Improvement in some areas....setbacks in others. We focused on what he needs to do to improve even more. I think that rather than being out of control, he is starting to see how eating healthy can put him "in control". And with constant testing of his glucose, it is slowly coming into control, and his fits of anger are slowing down. I just want to raise my arms and wave them up over my head and yell "praise the lord!"....but then I look around and realize we really aren't at a revival meeting. LOL!

We are working to take care of everything this week so that next week he can just relax and try to mentally prepare for surgery. We have planned an evening out with friends the night before and are jokingly calling it the "last supper". I know - morbid people. But he is laughing at the reactions and that's just what he needs right now - laugher.


Tuesday, March 02, 2010

Surgery - I like a good blunt surgeon.

I thought I would post the rather graphic description that the surgeon gave us this morning. I understand that they have to prepare us for the worst, and I am truly grateful for that. But I wonder if my husband ever gave thought to any of this 30 years ago when he first got diabetes. Ok, I know he didn't, nor has he given thought to it at all in the last 30 years.

Uncontrolled sugar is what got him here. Remember, this is a guy who last renewed his test strip Rx in 2001. He has not tested since I met him in 1998. He takes all the meds they give him. He eats anything he wants. Whenever he wants. Until a month ago.

So, first, we saw photos from the angiogram and echocardiogram. The surgeon says, "there just are not many spots that are healthy enough for us to go in and graft a good vein to."

Whoa! Hold the fort! I was thinking "multiple blockage in each artery". I was not thinking "we can't find a spot to do a graft - it's that bad in there!!!" I think my own heart missed a beat right there. But as we looked at the photos of where the dye had gone in, you could clearly see blockage.....everywhere. Some more than other places. But a good healty vein? A good solid opening? I saw one spot! The doctor had circled 5 possiblities and said that he honestly couldn't say for sure until he gets inside.

This did NOT happen overnight! This did not happen in the last year. This has been happening over the last several years. And my husband just helped it along. All from high sugar? The surgeon thinks so.

Once we looked at all the photos, he started to explain the process. They will prep him for surgery. Once in the OR, they will of course, put him to sleep. They will cut through his chest bone. I'm thinking power saw? skillsaw? dremel tool? He didn't say and I didn't want to ask. The body gets hooked up to a heart machine during the surgery. The blood will pool in the sac under the heart, get syphoned into another machine, washed, then put back into his body via and IV. When the bypasses are all done, they will shock the heart to restart it. He has a DNR in place, but he has to revoke it or they can't do the surgery. Makes sense. So they then explained the process of what happens if something goes wrong.

Basically, they will keep him alive on life support, make a decision to invoke my medical power of attorney, and I have to reinstate the DNR.

Did I ever think this would be my "job" when I married him? Of course not! Do I want this "job"? I do know what his wishes are, but I wonder if I got to that point, would I be able to do it? I just don't know.

The veins will be taken out of his left leg. I worry that this might have a future impact on his legs? Always a concern for a diabetic, but I guess when you weigh the pros and cons, it'sa risk he has to take.

And then the seemingly endless list of what can go wrong. Stroke. Heart attack. arrythmia. Infection. Problems with blood transfusions. Pneumonia. Fluid in the lungs. Each with an increased risk.

All that was standard. Then the surgeon started looking at the endless list of medications that hubby is on and that brought on a brand new list of risks. And more labs and tests that have to be done before surgery.

And then he brought in the additional problem of his stenosis of the spinal column, inability to participate in cardio physical therapy after surgery and what that might lead to. None of it good. I know by then I was blocking things out - I just didn't want to hear any more. We had been in his office nearly 2 hours at this point. Hubby was blocking it out long before I was.

I think by then my head was throbbing. I wonder if the benefits outweigh the risks. But I just don't think there are any options and the surgeon didn't offer any either.

We are both happy that we felt comfortable with the surgeon and his team. We are grateful that a date has been set and we won't have to wait long. Hubby is making plans for coverage at work. Between labs, tests, and getting ready, we will both keep busy.

Isn't it sad that we had to get to this point before hubby let me participate in his medical program? But I don't think he has an option either. He's not supposed to drive until after the surgery. He's not supposed to lift anything over 5 pounds between now and 3 months after surgery. He's not supposed to do stairs more than once a day until after surgery.

I have my moments when I really want to look at him at tell him what an idiot he has been for the last 30 years. But I won't. I'll just say it here. It wouldn't do a bit of good to say it to him now.

I am pretty grateful that I don't have to get up and go to a job every day. I don't know how I could do anything other than this right now. We have an excellent support network of family and friends here and I am doing plenty to take care of myself - so I can take care of him. For fun, we're going to get mani/pedis tomorrow. He simply can't go to surgery with his feet the way they are. LOL!

Keeping his spirits up will be my full time job the next few day. Keeping him from getting depressed. Cooking healthy meals for him. Yep - a full time job. So, to the diabetics who read my blog - test, test, test. Don't trust a good A1c. Remember - his has always been good until last December.

And if you are married to someone who doesn't test, print out my entire blog and make them read it! This is simply not a journey I would wish on anyone. But we are here and we will journey forward one way or another.