reene wrote

DW - I so feel your pain! I have so many thoughts going through my mind - I don't know where to begin! Let's see what I get down here and, if any of it makes sense. Let's start with current behavior / situation. I recently went on an east to west coast road-trip with my sister, in her move to the west coast. We had a great time driving ~4500 miles total - checking out many natural wonders of the US. In the meantime, my husband refused to take my calls back home. He kept his cell off and, wouldn't answer the home phone. Kept in touch with our adult children, who had to deal with a couple of low blood sugars during my week away (he's usually good when I'm away). Needless to say, our children had to pick me up from the airport. We really haven't spoken much since I returned which, is not much different from his recent behavior. Although, I have to say his lack of communication isn't that foreign to us - it just seems to have reached at new level. He was probably mad that I went with my sister. He's never been happy with my outside activities - not being supportive of much that I do, including continued education for career growth. But, I can't let him bring me down - make me a prisoner. If I think I'm frustrated now, I'd really be frustrated. The additional activities include: a lot of volunteering at church and working with youth when our children were still in the school system. He's currently treating for Parkinson's, after a couple of years of symptoms. A good year ago, the doc didn't feel it was Parkinson's but, upon husband's recent doc appt (after over a year not seeing a doc), the doc has decided it is Parkinson's. Multiple med's have been prescribed - they may be making a positive difference - I sure hope they are. Just did a little online research to see if there is a correlation with frequent low blood sugars (yes, probably at least a thousand of them here, too) and Parkinson's, finding that frequent severe low blood sugars can lead to brain damage. 

Do we have a match? Well, I'm no MD but.... Brings me back to a doc appt I accompanied my husband to several years ago (10+, at least). I asked the doc if frequent low blood sugars could harm a person. His reply: no more than taking a sh1t or having sex. Thank you oh educated one...here I sit with yet another challenge, possibly a side effect of diabetes. I thought years ago of leaving my husband - actually kicking him out. But, our children (preschool and early elementary at the time) started acting up. It made me question: was it fair to disrupt his or their lives because I wasn't happy with how he wasn't taken care of himself? Everyone needs someone - is my purpose in life to take care of him? Have to say - not much enamored with this purpose. Don't like the anger; the frequent low blood sugars and all that comes with them; trying to function on little to no sleep the next day (most of his lows are at night - resulting in me not getting back to sleep for hours or, just in time for the alarm to go off). Additionally, our children are very frustrated with him. My daughter is very verbal thus, take her comments with a grain of salt. Our son, however, is an extremely fair, level-headed young man. When he starts expressing frustration, then I know it's not fabrication on my part. Our son asked me a few months back if my husband / his father ever said he was sorry or thank you - after I help him with a low. He has not. In fact, lately, he has begun arguing that he wasn't even low (like he did when our children were really young). The tell-tail signs were there, as were the blood sugar results I see when taking a peak at his glucose monitor. Our children have started helping me with the lows. Does this bother their father - thinking that his children are stepping in to help when he can't help himself? Did I make the right decision in sticking with him? All I know is I hate to see our children and myself be treated like the city dump.... OK, enough of my ramblings...thank you for "listening"... It's not an easy life for anyone involved, especially the diabetic.

I have written about this before, but feel it timely to write again.  I'm not a doctor....just the wife of a diabetic. But you can google this and find it just about anywhere online.  Of course, an actual diabetic person is not going to agree with me at all.  I'm used to that by now!  LOL!

When a diabetic goes low, they probably won't remember what they said or did.  They are most likely irritated, which makes them angry.  They won't know who or what they are yelling at...it's simply the unlucky person in their presence.  It could be the wife, the child, the neighbor, the employee.....whoever is there.  

Yelling, getting angry, is a body's natural way to increase adrenaline, which increases glucose, which will get them up and out of the sugar low faster than just about anything else.  

And at the same time, they won't remember any of it.

The problem is that the spouse, the child, the employee.....they remember every single word.  They don't forget.  And to compound the problem, they probably didn't do a single thing to provoke the diabetic's anger, and are confused because they don't know why they are the recipient of such behavior.  The spouse or child may well feel a sense of guilt - what did they do to bring this on? 

I went through this scenario for 5 years before I finally figured out that it was not me!  But for awhile, I really did think it was all my fault.  

And then I went to therapy.

And we figured out a pattern

And a nurse finally listened to me

And she got the doctor to change the time/amount of his insulin

And life got back on track for awhile.

Until the next time his body got out of whack and he started having lows again and the yelling started all over again

And while you would think I had learned and would recognize it as sugar lows, I didn't.  Not at first.  And once again, I thought it was something wrong with me that was making him so angry and so abusive all the time.

Now I know.  I recognize his lows pretty fast.  And with each one, I have to make a choice.  Do I provoke his anger so that his body will quickly create adrenaline and get the sugar pumping again?  Or do I remain quiet, non-confrontational, and just let him rant and rave.  Same end result.

I've tried it both ways.  Not much difference, except when I decide to provoke him, I can at least say the things on my mind, get them out of my system.  And who cares?  He is not going to remember a single word that I said to him!

My husband's previous wife left him after 22 years of this.  I married him before I understood it.  But his children hat him.  They grew up with what they thought was a very abusive father.  They did not and still do not understand diabetes.  They thought he was very aware of what he said to them.  He happens to think he was the greatest father on earth and doesn't have a clue why his kids hate him.  Should his ex have left him?  Who knows!  Should I leave him?  No.  Why not? Because I know exactly what's going on, I know when to walk away, I have learned how to handle his lows.  

But it was a forever struggle.  And I still have my moments when I wonder if I can continue.  Thus the power to stay comes in the knowledge that I can walk away any moment.  Would he understand?  No.  He still doesn't understand why his first wife left him.

We call it the diabetes roller coaster merry-go-round.  You never know which one you are on or what's around the next corner and you always hope for a glimpse of the man you knew before diabetes consumed who he is.

Good luck!

DW

some days are just funny

So, he says to me that he's not going to have the back operation.  Me, I aks him questions.  Why not? You said you don't want to end up living like your grandma did.  What will you do?

He says he will just live with the pain.

I remind him that we haven't been anywhere together in over 2 years.  It hurts him to travel.  He doesn't even go to the grocery store.

He says he will just suck it up and deal with it.

So, I tell him, tomorrow, you can go get groceries.

I want to see you dancing a jig every morning

I want you walking 3 miles a day.

This morning, he gets up and comes downstairs and dances a jig.

I crack up laughing.

But I know from the look in his eyes that just about killed him!

Told him to think about things for a couple of weeks.  No need to make a decision one way or another today.

But today, he is starting on Weight Watchers.  at least 50 pounds to lose.

Pray for him.

It will be a miracle if he can stick with it more than 10 days.  That's usually his outter limit for a diet of any kind.

A dieting diabetic dancing jigger.  Not sure it could get much funnier!

Hope you find something to smile about today!

DW

back home

I had a wonderful trip with my youngest sister.  A much needed break from life for both of us as she takes care of our elderly mom.  I must say that hubby did perfect while we were gone.  No crisis or emergencies.  He took the next step towards back surgery.  Looks like it will be a 2 day process.  6 hours of surgery on a Friday with an incision through his stomach, they put the intestines aside and reach the back from the front, then another 6 hour surgery on Monday where they go in from the back to finish up the process.

That way, he is not under anesthesia too long, less chance of risk.  He will be in the hospital for a week, being fed via an IV.  If he doesn't resume regular food within 8 days, he will be transferred to a nursing home.

I'm thinking with all the complications from diabetes....what are the risks that he will be in a nursing home for an extended period of time?  It took about 8 days after his heart surgery for his systems to fire back up normally.  Now they want to do 2 operations, back to back?  More than I can wrap my brain around at the moment!  I will give it a week or so to sink in, but he did quite well - he recorded the doctor's visit for me and took photos of the models.

They want to fuse 4 discs, insert rods, bolts and a cage.  He keeps asking me what he should do and I can't answer him.  I don't see how he can continue with his current level of pain.  He's basically immobile, so he can't even exercise. He's probably put on 40-50 pounds since his open heart surgery which is not helping a thing, but since he can't even walk more than a few steps, he's bound to gain even more weight.

The earliest they can do the surgery is going to be the end of January.  He could easily gain another 50 pounds by then.    And it's so sad because eating is the only thing left that he truly enjoys that he's physically able to do.

I talked to him a little about just giving up and getting a wheel chair.  He's not willing to do that.  I'm not sure I'm ready to go through such an intensive surgery and what appears to be an extremely long recovery period - maybe 9 months or longer.  I told him to go ahead and contact the surgeon and get surgery scheduled.  We can always decide not to do it.  I need more information as I'm still not certain what type of research to do.

So while I had a nice break for the last 2 weeks, I certainly got myself tossed right back into the middle of everything in less than 2 seconds!  LOL!!!

Choices and decisions.....it's part of what diabetes is all about.

DW

Update

Leaving Tuesday. Gone till 10/28.

Venous ulcer has shrunk another 1cm. The rightndirection. We don't go back tom that dr. For 4 weeks.

He has an appt with the neurosurgeon on the 18th while I am gone. I really hope they want to do surgery.

I found a jar of icing in the back of the fridge tonight! Didn't say a word. Think it's really funny that he's hiding the sweet stuff. If it was me and I was going ton hide something sweet, it sure wouldn't be icing!! LOL!!

Sorry for the typos. I'm trying to blog from my new iPad...it is a learning curve but I love it!

Packing is done. Moff to relax and watch a movie. Indulged and had my hair professionally trimmed and colored yesterday. It feels great!!

Hopeneveryone has a great few weeks. I will be keeping notes from my phone calls with hubby and post when I return.

Dw

Be happy! Eat what you want!

I'm getting ready to go on a trip overseas with my sister.  So I won't be around much for the next month.  It's the trip of a lifetime and I'm beyond excited about it.

I also won't be around to take care of him.

And he decided today that he needs to be able to eat easy-to-fix food while I'm gone.

He stocked up on soft pretzels, cookies, pizza, taquitos.....get the idea?

And I didn't say a word.

Yesterday, he said that the only thing he has left that he enjoys doing is eating.

So I am giving in and giving up for the next month.

He can eat whatever he wants.

Just be happy.

I am letting go. Truly.  Letting go.  He can simply do what he wants - eating and otherwise.

I'm going to be on the other side of the globe.  I can't help him.  He might as well enjoy the time I'm away!

1 pound of peanut M&Ms

Costco sized boxes of cookies

Hamburger helper

His dietitian would have a heart attack.

I tell myself not to think about it.  So I'll write it down here in the event we need to know later.

I'm excited to be going.  Scared to death to be leaving him.  Worried about what might happen.

Telling myself I'm not going to worry.  Nothing I can do about it from there.

But we all know you can't not worry.  :o)

DW

Mary wrote:

Hi DW, I deal with similar issues at my home too. One of my friends mentioned early onset of Alzheimer's disease. I am wondering if diabetic symptoms mimic Alzheimer's symptoms. My husband exhibits nearly all of these symptoms (plus the diabetic symptoms) and he is 48 years old! MaryM *** Here are the symptoms of Alzheimer's from mayoclinic.com Memory loss Everyone has occasional lapses in memory. It's normal to forget where you put your car keys or to blank on the names of people whom you rarely see. But the memory problems associated with Alzheimer's disease persist and worsen. People with Alzheimer's may: * Repeat things * Often forget conversations or appointments * Routinely misplace things, often putting them in illogical locations * Eventually forget the names of family members and everyday objects Problems with abstract thinking People with Alzheimer's may initially have trouble balancing their checkbook, a problem that progresses to trouble recognizing and dealing with numbers. Difficulty finding the right word It may be a challenge for those with Alzheimer's to find the right words to express thoughts or even follow conversations. Eventually, reading and writing also are affected. Disorientation People with Alzheimer's disease often lose their sense of time and dates, and may find themselves lost in familiar surroundings. Loss of judgment Solving everyday problems, such as knowing what to do if food on the stove is burning, becomes increasingly difficult, eventually impossible. Alzheimer's is characterized by greater difficulty in doing things that require planning, decision making and judgment. Difficulty performing familiar tasks Once-routine tasks that require sequential steps, such as cooking, become a struggle as the disease progresses. Eventually, people with advanced Alzheimer's may forget how to do even the most basic things. Personality changes People with Alzheimer's may exhibit: * Mood swings * Distrust in others * Increased stubbornness * Social withdrawal * Depression * Anxiety * Aggressiveness ****

Mary - I am no medical expert.  BUT....here are my thoughts on this.  A person who has diabetes for a long time is a person who is in the normal aging process.  But that process might get speeded up because of the damage diabetes can do.  We know that neuropathy is the loss of feeling in the extremities.  We know that the nerve endings start to die off in the feet, toes, fingers, hands.  And we also know that nerve endings start to die off in other parts of the body, such as the intestines.  Diabetics can go blind.  They seem to lose all types of normal body functions as the disease progresses.

So it would make sense to me that as the nerve endings start to die off in the extremities, there is damage being done to the nerve endings in the brain.  Why would diabetes be selective to what/which nerve endings it attacks?  I think it's such an extremely slow process that we don't notice it. And because it's tied into aging, we often think - oh, he's just getting older - at a much younger rate.

People are so eager to discredit what this disease does to the body.  And yes, if you are compliant, follow the doctor's orders, you can slow it down.  You can even get it into remission.  But if you are noncompliant....you simply speed up the process and the progression of the disease.

So, is it Alzheimer's , or is it just the progression of the disease?  Does one aggrivate the other?  Does one assist and aggitate the other?  I can only guess that it does.  Makes sense to me.

I grew up with a family that went to a Church of Christ - did not believe in any type of medicine.  The father became diabetic.  Did not do anything.  It wasn't many years and the saying was "he blew up".  His kidneys stopped functioning, he retained everything that went in, and he puffed up like a whale and died.  So I know first hand that medication can dramatically slow down the prognosis of this disease.  I also know what it does....and will do..in the long run....because this is what diabetes is.  High sugar eats away and the veins and arteries, and every inch of the body.

Hope that makes sense!


Today was my birthday.  The "real" reason he gave me the ipad.  :o)  It was a very good day for both of us.  We sort of took the day off and just enjoyed each other.  Even did a little bit of talking about the future and the need to downsize and get rid of stuff.   It's so nice to have a good day every now and then.  Reminds you how much you love them and how hopeful you are for even more good days like this!

DW

Support

I must be feeling chatty tonight.  2 blogs in one day?  That means I can go a week without posting again!  ha ha!

A very wise person once told me this:

You need a source of support.  It can come from your spouse and/or family.  It can come from your work.  Or it can come from your church.  But one of those 3 places has to provide you support.  And if you don't have that or can't find it, you will probably fall apart.

I have thought about that often over the years.  There have been times in my life when work was just pathetic....but my family life was wonderful.  I can think of times when my marital relationship was in the tubes, but I was on a high at the office.

And I remember once, in 1992, when I had nothing.  I had been laid off from a job, was going through a divorce, had moved 1000 miles away from family, church, friends - and I do think I had a breakdown that year.

So, in looking back, I think I have to agree with that very wise person - we absolutely have to find support from one of those sources in our life.

Right now, I have such an amazing network of friends.  They insure that we go out at least twice a week - often it's more than that.  I don't work, but my art is my therapy and I get wonderful support from those who see it and appreciate it.   I am surrounded by family who really lift me up on a daily basis.  And because I have all that, I have the strength to help hubby and care for him and be alert to changes in him.

I also spend an hour each morning in Bible study and prayer.  And I am clinging more and more to the strength of my spiritual support as I try to ready myself for our future.

As I think back over my life, I have always had spiritual support.  Even in 1992.  But I will confess it was probably at an all time low that year as well.

If you are the wife of a diabetic and you are not getting support from work, family, religion or friends....you have a difficult rope to tow.  Trying to take care of a diabetic almost demands that you find support somewhere else, as I just don't see it coming from the diabetic.  Maybe I should put that differently.  We have to be strong for them.  Support them.  Care for them.  So we have to find our own support from somewhere else.

Years ago, I didn't know how to find support.  But I have learned.  It comes from setting goals in our own life, volunteering to help others, giving back to others, joining a new group and meeting new people, writing our thoughts in a journal, praying, praying for others, and taking time out just for you.

I didn't start this blog to find support.  But in the process of writing about my life, I have made so many friends, and have gained so much support.  It's truly nice to know that we are not alone.  But I have also found support in my family, my art, and my faith.  Hope you all will find it, too.

DW

and another low

I should have recognized it

All the symptoms

Anxious.  Needy.  Demanding.

He needed a certain, specific power adapter.

First said my brother had it.  I quietly said I had already asked him and he didn't have it

Then said I had to find it.

Mind you, it's for something of his....that I never use.

I looked in all the usual places - where we keep extra power adapters.  Nothing fit.

Then I got out all the travel converters thinking something might work.

Went to the garage and went through 2 huge bins of electrical wires and stuff.

(Wondering why any one man needs to keep all this stuff?)

He came out to the garage.  Stood right in front of me.  So close, I couldn't move.  So I asked him politely to move aside so I could get to the bins.  He snorted.  Sighed.  Harumphed. You know how they do.

Went to the basement and went through 4 boxes of electrical stuff.  In the process I found about 30 different power adapters.  Brought them all inside and/or upstairs.

Nothing worked.

By now, he is so agitated, I realize it's a sugar low.  Why this isn't my first reaction I will never know.  I think I am ever optimistic!

Found a bag of candy and opened it up and offered him some.

In 10 minutes, he was a perfect gentleman once again.

I think I just realized why my in-laws pantry looks like a candy store.  My MIL got smart years ago!  ha ha!

I'm still trying to do the healthy route....but I may give up and just feed him chocolate.

He sure is nicer!

He cut 2 different adapters apart and wired them together and got what he needed working to work.

It's 10:55 pm.  I have just spent the last hour and a half of my life looking for something that he probably would have found himself if he ever just put things back where they belong.  Not this guy.  He's an electrical nightmare!  :o)

But I do think the problem is ME.  I think I will never learn to think diabetes first.  I will never learn to suspect diabetes until we are half way through an ordeal.  And don't bother ask why I even started to help him tonight. I'm just a complete idiot!  Maybe one of these days I'll learn to say "NO" to him!  But I doubt it.

So where's the line between love - and we do it because we love them, and waking up and realizing their stupid behavior is due to a sugar imbalance?  Something I probably will never know.

DW

PS, I'm going to the grocery store tomorrow and filling the pantry with chocolate.

(just kidding!)

24 hours later

he was his usual apologetic self.  It always happens. And then I remembered...just before his outburst, he had come downstairs and walked into the kitchen and gotten something to eat.  So I thought back.  He had fixed himself one of those soft pretzels about 4 pm.  So he wasn't hungry for dinner and didn't eat.  But then came down and got a bag of potato chips.  So I'm pretty sure he was in the middle of another sugar low.  And that was the basis for his outburst.

I printed out some information about depression and anger and left it on his desk.  He never made a comment about it the next morning.

He went to the apple store and bought me an ipad.

He almost always buys something when he wants to apologize.

Is it worth staying for?

Hardly!

And I told him that while I appreciated it so much, it didn't make up for his outburst.

Will it stop him from doing it again?

Probably not.

No matter how much I want to leave, I probably won't.  I love him for all the good moments.  I love him for the man I know is there, somewhere....that shows himself every now and then....the guy I fell in love with.

Diabetes. Has to be the world's worst disease.

DW

The wound is better!

Ahhhh....the roller coaster ride - again.

The wound is better.  It appears to be healing.  While it still looks horrible, I can see it closing.  I can also tell it will be a lengthy process.

He did the extra 5 sets of xrays on his back.

The neurosurgeon is out on vacation for 2 weeks.....so we wait.

Always a rollercoaster.

2 days ago he said he wanted to go to the movies on Saturday night.  We even picked out the time/movie to go see. I remember saying, "I thought we weren't going out to the movies anymore."  He replied, "It's your birthday, I thought we'd do something nice".  (birthday is not for another week, but I was happy he wanted to go out)

I went to lunch with a pal today and when I came home, I asked what time we were going to leave to go out.

He looked at me like I was crazy and he said, "go out where?"

I said that I thought we were going to the movies

He said he never said that.

I reminded him of the movie he had said he wanted to go see and the time.

He said, "I asked you IF we went to the movies, what would we go see."

I told him that his implication was that we were going to the movies on Friday night.

He got mad and started yelling at me that he had the right to change his mind.

I simply said that he should tell me when he changes his mind so I know what ot plan for

Then he really got mad and started accusing me of changing my mind all the time and never telling him.  Of course, I change my mind....but I do tell him.  I told him it just didn't matter any more.  I went to bed and took a 2 hour nap.  No, it didn't help.  But he is absolutely exhausting.  The word games he plays, his ability to turn everything on me - make every tiny detail my fault.  If I could just get a job, I would leave him.  But no luck on the job front, that's for sure.

So I stay.  In a place I truly do not want to be.  Never planned this.  Never asked for this.  Never agreed to this.  I know he hurts.  I know he is depressed.  I know he is exhausted.  But it is 100% his problem, not mine and I am tired of being his scape goat - his excuse, I am tired of being blamed for everything wrong with his life.

Maybe I just need a 4 hour nap!  LOL!
DW

wound is worse

Tuesday, we went to the wound care center for the venous ulcer on his leg.  They presribed a treatment plan.  2 days later the ulcer is noticeably worse. He is supposed to call the doctor if it gets worse.  He did not call.

I want to throw up.

For a million reasons.

Because he refuses to do what they tell him to do.

Because of how bad the wound looks.

Because the "what-if" of it all makes me a nervous wreck.

I somehow think if I throw up, I will feel better.

Now, how stupid is that????!!!

DW

good or bad?

We had the consult with the ortho surgeon on Friday.  They said if we didn't hear from our HMO by today to call them.  So he did.  Turns out the surgeon took hubby's files home with him over the weeekend, so the request to do more xrays didn't get submitted.  Surgeon will be back tomorrow.

So the question is - is it good or bad?  Good that the surgeon was concerned enough to take the medical record home to review over the weekend?  Bad that the condition warrants the surgeon to take it home and study?

I simply told hubby that I thought this was a very good surgeon - someone who cared enough to look more closely at the medical record, and thus we should listen to his final recommendation and take it to heart.  He agreed.

In the meantime, hubby has started having nightmares.  Really bad ones.  Bizzare ones.  Scary ones.  He wakes up and cannot go back to sleep because he is afraid the dream will come back.

I wonder if it's a side affect of one of his medications.

I suggested he call his physician.

He didn't.

In direct contrast, I have been sleeping like a log, getting excellent rest, no dreams and getting my rest.  Hopefully that will continue and I can stay one step ahead of everything else.

He is back in his depression.  He did not leave the house all weekend long.  Did not want to go to the movies or out to eat.  Absolutely nothing.  Just watched movies all weekend long.

I had plenty of things going on and stayed quite busy, yet still concerned about his level of depression.  He continues to refuse to see anyone about it.

The anger outbursts are increasing, but still manageable.  I can understand a lot of it.  Worrying about his back, dealing with the pain.  I think he's pretty much sitting on the edge.  But nothing I can do other than listen and be here for him.  So life goes on.  Overall, it was a quiet weekend.

DW

Surgeon visit

Went to meet with the orthopedic surgeon yesterday afternoon.  I liked the guy.  He did a very thorough exam.  I think he knows what he wants to do, but he ordered  5 more sets of xrays.  I think he wants to make sure before he tells us what he thinks the next steps are.

Of concern was the fact that our HMO did an MRI - hubby was laying down, and this does not show what happens to the back when he stands up.  So we need standing xrays to compare to the MRIs.

It was interesting to see how you can view cross sections of the vertebra and see them lined up at the same time.  Hubby has substantial narrowing of the spinal colum, degeneration of numerous vertebra, curvature of the spine.

The most interesting finding is that he has lost a full inch in height in the last year.  Wow!! That was a shocker to both of us!

I have never doubted his back pain.  But now I wonder how he even manages to walk after seeing everything that is wrong with it.

So, we wait.  The HMO has to approve, then schedule the new xrays.  We are supposed to ask to have the films, then hand carry them back to the surgeon and will have a second consult with him.

After that, hubby has to make the decision whether he wants to have back surgery or not.  I simply want to know what the recovery time is and how surgery will impact his dibetes.

More wait and see.

DW

Brain fog

Mary wrote:

I got scared this morning. DH is a Type 2 and he tested high this morning. He ate his usual breakfast of sugary cereal even though I offered to cook eggs for him. He was trying to type on the computer keyboard and I watched him trying to distinguish the numbers from the letters. He would type something and then realize that is wasn't right and then try again. All the time he was doing this he was asking me the same question over and over (What is his email address? What is his password? Lucky for him that I have a good memory). I told him that he was not acting right. I asked him if he was feeling okay and if he was having a problem with confusion. His response was silence. He would not or could not articulate what he was going through. I asked him if he wanted to go to the ER. No response. He just kept on trying to figure out his keyboard typing. He is very computer literate and never had any problems until today. I helped him get into his email account so he could read his messages.

And I have to say "I so understand!" Today was not good here.  I went out to the garage to get something and noticed a huge pile of something that did not look good at all on a wood shelf that I use as sort of a workbench.  I have drills and a grinder and a bin for screws on it.  I called hubby to have him come take a look at it.  He said, "oh, I spilled some battery acid there."

So, the battery acid was eating into the wood and was festering up.  I was so upset.  I got a paint scraper out and scraped as much as I could into the trash.  That's when I saw the acid was eating the wood away.  $100 shelves.  I absolutely could not believe that he just left it there, didn't even try to clean it up.  I put baking soda on it, made a paste, took the shelves apart, got the wood outside and hosed it down.  Of course, I ran out of baking soda and had to run to the store for more.  The acid had eaten almost half way through the shelf, but I think I got it all off the wood.  I flipped the board over and put the shelves back together and then put everything back on the shelf.

I called my sister and vented.  If I had a job, I would leave him today.  It took me 2 hours out of what was already a really busy day to clean up a mess that he made.  I know, I know - his back hurt.  He would do it when he felt better.  The problem is that he is never going to feel better and if I didn't clean it up - it would have eaten all the way through the board.  So, no big deal - cut a new board!  But why me. Why do I have to do it all?  Why do I have to clean up all of his messes just because he doesn't feel up to it?  I just wanted to scream.

And I know he doesn't feel good.  But to just walk away and leave BATTERY ACID?????  He could have told me when it happened.  No, I'm sure he was in a sugar low or high and just not thinking.  It happens so much.  Most of the time I just ignore it.  But battery acid????

I wonder what will be next?  What will he forget?  What will he get confused about?  What will he overlook?

So Mary, I am right there with you.  I understand completely.  I don't know what we can do - other than keep an ever watchful eye, try to find the spills before they eat the wood up, try to stay one step ahead of everything, and try to NOT get worn out.

Tonight....I'm worn out!

Lynn wrote:

I am scared for you. It sounds like he is giving up and just doing whatever he wants to do, barring consequences...don't his doctors give him hope? Just wondering. Is the work too much? too much stress to work and take care of himself...just a thought...is there a way he can get disability? just another thought...what about depression meds...if he isn't on them would he consider it? these are just thoughts that have popped into my head as I feel concerned for my cyber sister...I am scared for you two. HUGS and LOVE.

In a nutshell:
He won't quit work
He won't take depression meds
He won't go to counseling
His doctors are actually quite optimistic.  He isn't.
He could qualify for disability.....but I sort of think work might be better for him at the moment.  At least it gives him something to do and keeps his mind busy.

I'm pretty sure he's given up.  I do my best to stay happy and optimistic around him (when I'm not seething mad about battery acid!)  When I do get mad, I find a project to work on - today was cleaning in the basement.  I have a goal.  Get everything up out of the basement while I can still do stairs myself!  It's a good goal.  Forcing me to sort through things.  Keeps me away from him!

I've been doing tons of research on depression, mood swings, impacts of various drugs.  He has his moments when he still seems perfectly ok.  But lately, we've been experiencing more and more forgetful moments.  Missed appointments.  Getting times and dates of appointments mixed up.  Missing meetings.  I try to keep a calendar and when I remind him of something - he actually argues that it's not on that date.  Then when he misses it, he apologizes.  We've had a huge increase in stuff like that going on.  I try to remind him.  But he can be pretty stubborn on most days!

I still try to find humor in it all.  Some days it takes more effort than others.  The good thing about the battery acid is that I got that shelf cleaned off!  LOL!!!  One more thing I can cross off my "to do" list.  Maybe he should pour some battery acid on the window sills as I need to repaint most of them!  :o)

DW

Today, I'm scared

We all have our moments. They come and they go. Today - I'm scared.

He is depressed. I know this is common for post open heart surgery. I know he needs counseling. He won't go. I can't help him.

He said all he wants to do for the next 5 days is sleep.

Part of this has to be because he is back eating all the crap he wants. Not exercising. Loading up on sweets.

With increased medical bills due to the surgery, back, all the specialists, office visits and prescriptions.....we have had to cut way back in other areas and this is contributing to his depression.

He is gaining weight and quite puffy looking. His eyes look especially swollen to me. I am noticing that sweet uric smell in our bedroom once again. He says he doesn't smell it, but I sure do. There was a TV series out here while back with a grim reeper.....and I feel like this smell is his grim reeper. It's almost a warning that kidney failure is around the corner once again.

It is so sad to see him in such a state. But I know I can't do anything except be here for him. I am doing my best to keep busy and active, fill my day with projects and outings. But in the background - he is overshadowing everything.

He went to bed at 1 pm, it's now 3 pm. He was supposed to be off work today, but got called into major meetings starting at 6 am this morning.

I'm scared that the infection in the venous ulcer in his ankle is spreading.

I'm scared that he is reverting back to kidney failure.

I'm scared that something else is going on with his heart and he is not getting sufficient oxygen to the brain. (He's acting much like he did before he had bypass surgery).

I'm just scared.

And I realize that it's ok to be scared. As long as I don't allow the fear to consume me. As long as I don't allow the emotions to overcome me to the point that I can't function. Or to stop living my own life.

Too hot to do yardwork, so I'm going to read a good book this afternoon. Have already had a visit from an art pal today and went to a warehouse sale.

But in between all that....I just wanted to note that I'm scared. And that I don't think he's doing well at all.

DW

venous ulcer

As expected, it'snot healing. So his physician referred him to the wound care center last Wednesday. When he went to make the appointment, they told him they couldn't get him in until 9/14.

So for the next 2 weeks, we simply wait and hope that the infection doesn't spread. It is just amazing to me that our healthcare system is so completely stupid!

His back pain has increased. Probably because he is favoring his leg.

The neurosurgeon is referring him to an orthopedic surgeon who is supposed to schedule a consult appt by the end of this week.

We talked a little bit today about back surgery. 50% chance it won't help at all. Chance he might be paralyzed. I told him all we can do is see what the new surgeon has to say.

He is sleeping more and more. Always tired. I think the pain is wearing him out.

My sister surprised us with an overnight visit last night. Always fun!

He is taking 5 days off over Labor Day weekend and just wants to stay home.

The blessing in all this is that he can still work.

DW

The dicotomy of being away

I love being alone
but I worry about him being alone

I don't have to do anything for him
but I worry about him having to do everything for himself

I can eat whatever I want
but I worry about what he's eating

I sleep so well
but wonder if he is sleeping at all

I don't have to see the ulcer on his leg
but I wonder if he is doing what he needs to do to take care of it

When I call him and he doesn't answer the phone
I wonder if he's in a sugar coma

the list could go on

if you are the wife of a diabetic, I think you know.

DW

update on venus ulcer and more

Lilly wrote:

Just wondering: If he has been eating whatever he wants, his blood sugar is probably way too high at times. I know that my husband (Type 1, not Type 2) can get extremely verbally abusive at both extremes: too high, or too low, and I'm not always sure which it is, until he passes out (or just keeps ranting). Sadly, when he decides to sleep all day and I am at home, I enjoy the peace and quiet. And he wonders why I don't try to wake him! I am also avoiding being in the same room with him more and more, to keep from being yelled at or criticized for senseless things. (He also tells me he's not yelling; I'm yelling at him!) Simply being on survival mode is NOT the way I want things to be all the time, but this is my reality right now. I don't want to leave a chronically ill husband, but some days . . . !

He has to be going high because he's still at 6.2 overall and having lows. But he's not testing any more. Probably hasn't tested in 2 months now.

I have escaped to my sisters (2 hours away) for 5 days. I have 2 sisters who live in the same town, so the 3 of us have a weekend planned of chick flicks, shopping and resting. It's the best therapy on earth. And I'm close enough that if I absolutely need to go home, I can, but far enough away to get a break.

Went with him to the doctor's yesterday and they took off the unna boot. Doc thinks there may be new cell growth, so they wrapped it back up and we wait another week. If there was new cells, then we should see major progress in another week. If it wasn't, then he will go to the wound care center. His leg was totally shriveled up from being wrapped so tight. I thought it looked even more infected, but the doctor thought it was new cell growth. So we wait another week.

Hope you all have a great weekend!

DW

I think between fighting that, the irritation of the unna boot, eating crap again, sugars going high and low, I needed to get away.

So today, he couldn't.....

plug in an extension cord on one side of the garage and run it to the other. Literally! He waited until I got home from the store, then started yellng at me because I had moved something in the garage. The GFI popped 3 times and he had to go to the basement each time to reset it. I asked him why he didn't run an extension cord from another outlet and he just started screaming at me. I said, "you don't need to get mad and yell!" to which he replied that I was yelling at him....and I hadn't even raised my voice - just asked a question.

So as he stormed into the house and slammed the door, I said, "oh, go eat some sugar!" LOL! No, I don't think he heard me. But I'm sure he's in a low. Just a quick post as I'm out the door to go run some more errands. I am NOT going to sit in this house with him in this mood. I don't need it and I don't deserve it.

Guess I should also note that the incision in his ankle where they took the vein out has now turned into a venous ulcer. I had been telling him that he needed to go to the doctor and he refused. Finally this week, when it started oozing, he made an appointment. They put an unna boot on it - for 2 weeks. If it doesn't improve, then he has to go to the wound care center. You know, he doesn't even consider stuff like what might happen if the infection goes to his bone. He just ignores it until he can't. So I'm sure he's upset about that as well. He is supposed to elevate his leg 4 times a day for 30 minutes each....and if he had been doing this since surgery....well, ok....

I'm off to run errands and simply escape from his wrath for a little bit today!

DW

the job hunt

I think I need to go back to work. Not for the money. But to get out of the house every single day. To get away from his constant depression. To associate with something outside of the realm of diabetes.

Sad.

But I have decided this is what I need to do.

So I applied for my first job today.

My goal is to apply for one job a day, 5 days a week.

Do I care what I do?

Not really.

As long as it is "doing" something!

He is very non-communicative again today.

I want to go back to vacationland and escape this!

Maybe I will start sleeping days and be awake all night.

Just so we don't run into each other! LOL!

Broke a tooth off last week and have to go to the dentist next.

Hope all the DWs out there have a peaceful day!

Did it work?

Yes and no! The pain on one side of his back/hip is better. The pain on the other side is much worse. After 3 weeks - it just doesn't seem to have helped him that much. I had a mini weekend getaway with another artist pal and came home to an utter bear of a guy. Ugh! I mean every little word is a pain to him. He's completely and totally intolerable. I'm just positive he ate whatever he wanted while I was gone and now it's back to veggi burgers, no potato chips, no chocolate....and he's just plain mad at me!

He said my brother was here and they went out to eat and a local sports bar where they serve nothing but deep fried comfort food! Just what both guys needed. ha ha!

But you know what, there is absolutely nothing I can do to help him. He is in miserable pain because he STILL refuses to take care of himself.

He had the TV on this evening so loud it was shaking the house. I asked him to turn it down just a notch. You can't begin to imagine how angry he got with me. He finally put on his headsets. Now, I assume this means he is going deaf and will just yell at me even more because he can't hear what I'm saying.

I did have a wonderful weekend away and am so appreciative of my friends who keep me sane!

DW

FINALLY!!!

This afternoon, he gets his first cortisone injection in his back! Took them long enough, huh? But we are both excited and hoping that he has a peaceful weekend. I'm just not sure I'll know what to do with a guy that's not in pain! LOL!

His heart seems to be working just great. Diabetes is as under control as it has ever been. Glucose is still too high. He's back to eating whatever he wants - out of control, so I'm going to try to reign that in this weekend with a round of grilled seafood and healthy cooking. Now, if I can just get him to cooperate!

Will try to post the results of the injection as soon as we know. Just praying that he at least gets 24 hours of relief. A couple months would be wonderful!

DW

Pain

How much pain can one person take? Poor hubby. I worry about him day and night. He simply can't do the physical therapy they want him to do for his back. He is in somuch pain that he vomits. How sad is that?

And yes, that much pain has an impact on his glucose levels. Even with as many lows as he had after his heart surgery, his A1c is still at 6.9. Sigh. That means that for all those lows....it's going really high at other times. Sigh.

But pain management is the number one priority at the moment. He is not functioning at all. Sleeping way too much. Probably not eating enough. Not eating in a timely manner. Not sleeping because of the pain.

I want to cry for him, but I know it won't do any good. His daughter was here for father's day last weekend, and he really couldn't enjoy her company because he was in so much pain.

When will it end? Well, we are hoping they will try cortisone injections about mid July. But that's almost another month of waiting. Of intense pain. Of being sick to the stomach.

I can tell that the pain is wearing him thin. He doesn't have any humor left. He has no patience. He is getting more and more depressed.

How much pain can he take? I simply hope he can last another month.

DW

Maintaining

Lab results came back the same, so that is good. While labs aren't "good" by normal standards, it is good that they haven't changed/gotten worse. He is attempting to do the physical therapy for his back, but the exercises are so painful, he gets nauseated. Then he doesn't eat. Then his glucose drops. I'm not sure it's worth doing them over. He contacted the neurosurgeon's office and they told him to keep doing them, regardless of the pain. So rather than every day, was do them together, then wait 2 days and do them again. Takes that long for the pain to subside.

So, with all this pain, he is getting rather depressed and cranky. He's less and less interested in doing anything. Wants to eat what he wants. And I feel so sorry for him because I know if I were in so much pain I got sick to my stomach - I'd give up on everything else.

But beyond that, we are maintaining. It seems like we are growing closer to each other through all this. He seems to (for the first time) be caring about what my emotions and needs are. I think we both have agreed that we don't know what to do about his back and the pain.

His daughter came down for Father's Day weekend and he is enjoying her company. Good diversion for him.

DW

Is life good, or am I just numb?

LOL! I think I'm just numb. But I do get tired of posting the same thing over and over. His heart is mending. He is not exercising. He's quit testing his sugar 8 times a day. He's back to eating the same old crap.

And I'm back to being numb about it all. I just don't care. Surgery drained me. I need more time to recover. My therapy - gardening. I hate it....but it's something to occupy my time and since it's summer - it's good. Plus, it gets me out of the house 3 hours a day and away from all this.

Just tired of it

He has done the PT for his back 1 time in the last 2 weeks and says it causes him too much pain to do it. But he won't call the doctor and tell him that the PT is increasing his back pain.

Yet as long as he doesn't yell at me over stupid stuff, as long as I don't see the result of sugar lows....I'm good. I can live like this I know, I know - he could drop dead any second...but then we all can. I wish he would change. I pray every day that he will change. But he hasn't and he won't. Not even a triple bypass with a TMR woke this guy up for good....just for a few weeks.

Life goes on and overall, it's all good at the moment.

DW

Baby steps

Lynn wrote:

This is incredible...I MUST be Hellen Keller because I even took a swig of what I thought was a can of soda but it was a spit bottle and almost threw up so I tolerate a lot...but then again, I do get the addiction thingie as well, since I am a sugar addict when I get started...can pound a half bag of Tootsie Rolls and have, a pound of chocolate a day, and have...but when I grew a stone the size of a mini football in my kidney and had to have it lithotripsied it was my wake up call...I don't know...hubby and I joke about "don't judge me" and I hope he quits again, but he took it up after we had a car accident in April and he suffered a subdural hematoma and has been chewing again since. When I shared the info. I expected him to quit right then, but he was already off the Diet soda and trying to make other dietary changes/habits so he said, I will when I am ready...but I do get it because I would drop the 50 pounds I need to drop already if I really worked at it...oh, frustrating as hell because YES, love is blind. But I would rather have the love than not.
Speaking of love...I LOVE that I have met you and the other wife of a diabetic 2. HUGS

I know what you are saying....but in all of that, I got "car accidentin April" and immediately wondered if you hubby was behind the wheel? I rarely let mine drive if I'm in the car. Anyone who has sugar lows as often as he does has no business driving. Judgment is clouded during a hypo. Decisions/reactions are not as quick as they should be. Mental confusion prevails. And since you just don't know when a low is going to hit and he can't seem to forecast them these days, it scares the crap out of me to let him even think about driving.

Interestingly enough, I think he is a little afraid himself. He doesn't seem to have much of a problem with me doing all the driving. Now, part of that could be due to his back pain, but I just think he's more comfortable with me driving.

PT on his back starts Tuesday. We've had a hectic couple of weeks and today we are getting back on our serious nutrition plan. Yes, I know, if we stopped eating chocolate, we could drop that 50 pounds. So here's what is proving to be successful for us. Together, we are down 50 pounds right now. And maintaining. We simply count sodium. Under 2000 mg per day. It is nearly impossible to do. You can't eat out and keep that goal. You can't eat any processed foods. It's mostly fresh fruit and veggies. And it's amazing how good I feel - just keeping my sodium at that level. Granted, we go over a lot. And we do keep an eye on calories, carbs, fat, sugar, etc. But if you keep the sodium down, everything else will stay down.

As hubby says, it doesn't matter how bad we are right now....it's still so much better than before his surgery. I've lost 20 pounds and would like to take another 20 off. But I will confess, it is really hard to keep that sodium under 2000 mg per day! Extremely bland diet.

And, we have kicked up the exercise. Age is working hard against us, as is arthritis. But again, it doesn't matter how "bad" we are at exercise - we are still way ahead of where we were!

I keep thinking baby steps. We just do a little every day- it's more than what we were doing.

DW

Smoking with diabetes

Lynn wrote:

I googled "living with a diabetic" and ultimately I came to your blog. I am so glad I did. I too have lived with my hubby for 38 years, and much of it has been since he was diagnosed as being diabetic and I didn't realize how much of a stress it has put on me being married to his condition. I am looking for support and think I have found it here...We love them, we are trying to help them, but we are human and need another person with our situation to vent, share, and understand with.
Thank you for this blog. HUGS

and then another comment:

Hubby chews tobacco and until the other day I didn't realize that nicotine messes with insulin...I googled the information and sat down with him to share it...he is hooked, has been for years, has quit a few times but goes back to it...has always been asked if he smokes and he truthfully says he does not but I didn't realize it wasn't the act of smoking they were getting at but the nicotine...I have been nagging and he seems to take it okay, but he keeps pointing out that he will quit again when he is ready to...frustrating as hell to see him dip into the can of chew when now I know it isn't helping him at all...denial is a #@$#!@$#~
Thanks for letting me vent. It helps.

Which got me to thinking. Hubby always so proudly tells his doctors that he has never smoked. Never picked up a cigarette in his life. I just cringe when he says that. I just think he is so incredibly stupid....and so are his doctors.

I have come to learn that you have to ask very specific questions, very detailed questions - you have to think like his brain and ok - that's impossible to do!

When you ask him if he has ever smoked, he assumes you mean cigarettes. And he always answers "I have never smoked a cigarette in my life".

But what they do not ask him is, "have you ever smoked a joint? Have you ever smoked marijuana? Have you ever eaten marijuana in a brownie or other food?"

I just wonder if he would tell the truth then.

He thinks marijuana is medicinal. Now, quite honestly, he hasn't smoked any in about the last 9 months. But before that, every weekend, and before that....all the time, whenever he had any pain at all.

I know the impact it has on his diabetes. He denies it all.

How can the doctors possibly help him when he refuses to be honest with them? You would think slashing him open, ripping his ribcage apart, hooking him up to a heart/lung machine.....that he would get the hint?

Not this guy! He still answers the question that he has never smoked in his life.

And ya wonder why I get stressed? LOLOL!

As for chewing - I would leave him for certain! Dated a guy about 35 years ago who would spit the chew in the back yard and I stepped in it once - barefoot! That ended that relationship! Funny how when I was so young, I wouldn't put up with anything like that.....and now I tolerate so much. It really is true that love is blind.

DW

and the journey continues

He will start physical therapy on his back in 2 weeks. Well, that's the consult visit with that department. He meets with them and they tell him what's next. He was pretty upset last night talking about it. Said he had spend $300 on co-pays for PT for his heart just to go walk on a treadmill and ride a bike. And I said, "but you aren't doing it now....and you did it there."

I'm not sure he got my point. He has not walked in the week and a half since cardiac PT released him. Do I treat him like a child and remind him every day that he needs to go walk? When I do mention it, he says, "I know" and that's it. I can't physically make him do it. It's just so frustrating to stand by and watch him slowy revert back to his old ways. I think I was a little over-optimistic that he would figure this out and change. Now, I'm not so sure.

And he refused to test himself last night, but I'm sure he had a low. We hav a basket to put fish in on the grill and he couldn't get it to open. I didn't think much of that, but then he couldn't get a sealed package of fish to open using a pair of scissors. I knew he was low when that happened. He started yelling at me and I simply left the room.

I can't help him. I can't save him. Just so sad.

DW

Getting my life back

Today, I taught an art class. We made dichroic glass pendants. One of my favorite things to do. It's the first class I've been able to schedule/teach this year. And it feels wonderful!

Hubby celebrated by going to a local bakery and buying a chocolate carmel cake for the students. Of course, they loved him to pieces! And he didn't eat any at all. So I thought that was huge progess. He can have sweets in the house, and won't eat them. Yeah for him!!!

While his back is still causing him incredible pain, we are both trying hard to get back into the routine of life. Yet that routine has been altered. Daily walks, eating healthy, treadmill and recumbant bike, exercises, healthy snacks. I think we are past fighting it all and have accepted it as a way of life. He is still testing numerous times a day, taking his insulin on a very strict schedule, eating snacks when he starts to go low....and it has made a huge difference in everything else in life.

And while we both know that this could end any time because his kidney function is so low and dialysis is looming just around the corner, I think both of us are enjoying this phase.

Art is a release for me. A place that I can escape to, play, have fun, create something, share what I know with someone else, teach them how to do something that they love. I have really missed it this year and am so happy to be back. It's been a really great day.

May you each have a great day. We all need them every once in awhile - just to remind us what life is really like!

DW

Catching up

I know - been awhile! So, post cardiac physical therapy is completed and he has a call in to neurology so he can start PT for his back. While I feel pretty certain that his heart is back in gear, it's really hard to tell because of the back pain. He is walking every other day, and really trying hard to eat right. But the pain overwhelms him most days. He's so grumpy. And yes, I know, if I were in that much pain, I'd be just a completly miserable person all the time - just like he is. But I think he tends to forget that I'm here. That I have needs. That this is a partnership. Not just a one-sided story.

But then, because of his pain, how can he even consider me?

So I try to understand, be patient, carve out a life of my own. It's sad. It's hard. It's lonely.

He is sill under a weight lifting restriction and it is taking it's toll on me. But I am resting when I need to, sitting on the heating pad, eating healthy and doing all the things I need to do to take care of me.

Mostly, I wake up, and take each day just one step at a time. I don't think much about the future or the past. I just try to do what needs to be done to get through today. And I make lists. That eventually get thrown away because I realize they will never get done, and that's ok.

Finding pleasure in little things has become important. But I feel like I'm old before my time. There is so much we have changed this year and so much we still continue to change. So much activity that we have had to give up. And I sit here and know that the only reason we give it up is because of his health. Sort of sad the things you do in the name of love.

Trying to find joy in the things you can still do is often times quite hard. Especially when that list has dwindled down to so few things. Limitations - not a word I have ever accepted. But when he says "no" - then it's either go it alone, or give it up. And some things are just no fun when done alone!

Aside from that, life is ok. He is here. He is functioning. We went out the other night and a man wheeled his wife in. She was younger than me and had had an obvious stroke. Was paralized for the most part. He sat there and fed her and talked to her and laughed with her. It was interesting to watch them. Made me so grateful that hubby is where he is.

That's the lesson in life I'm learning over and over every single day. That there is always someone else much worse off than we are and we just need to be grateful for what we have left - even if it isn't what we had yesterday.

DW

Cardiologists visit

So, 8 weeks post op and in to see the cardiologist today. She is pleased. In 4 more weeks, he can do anything - meaning that we start the process of getting his back fixed.

She agreed that she is going to see him in 6 months, then once every year. I loved her for that! She said sometimes they release you for 5 years, but because he has diabetes - once a year.

She still thinks that he has had a heart attack at some time in the past. At the bottom of his heart - a place that doesn't show up on an echocardiogram. I think I agree based on the fact that the surgeon said there was no blood flowing to that part of the heart and very few healthy veins down there.

I feel like thisis my alert, my wake up call - that while he is better, he is not out of the woods and will never be out of the woods. Amazing how intricate the heart is. Even more amazing is what they can do these days to help it work longer.

DW

Physical Therapy post vacation

We had a pretty good trip after getting off to a rugged start. His meds arrived the next day. He walked every morning. Did pretty good with eating the right foods. Did some exercises with hand weights. Tested and kept is sugars pretty even. No lows as he was able to divert them each time. Our host were so gracious and grilled fish of some type most nights. When we ate out, he had salads most meals. So it was a great trip. We even got some rest in.

Came home and he started back iin physical therapy yesterday I don't know if it's because he switched back to a treadmill rather than walking on the ground, or if it was being away from the recumbant bike for a week, but he did something to his back. He could hardly move last night. The pain was so intense I really thought he was going to cry and he has a very very high threshold for pain as it is. He was taking narcotics and they didn't even phase him.

Today has been a little better. So hopefully whatever happened will start to heal.

When he's in that much pain - I want to cry myself. It just brings life to a screeching halt. No one gets any sleep. He was up til 1 am, up at 3, at 4, and at 6 am. So we are both exhausted today, of course.

Other than that, everything seems to be good. Almost too good. We have a f/u visit with the cardiologist tomorrow and I'm keeping my fingers crossed that it's a good visit as well,

DW

Vacation

We got to the airport and he said, "I left all my pills on the nightstand".

What do you do??? I called my friend and she went and got them and shipped them to us overnight, 8 am delivery. Thank goodness for good friends! First night out was a mess without his meds. He did have his insulin....but nothing else.

I asked him 5 times if he had everything. Every time the answer was yes. I truly just wanted to pull my hair out.

But I am getting some rest and he is doing pretty good finally. Traveling with diabetes at his stage is certainly a challenge - adjust for 2 time zone changes, time of meals, etc. He did get up this morning and walk a mile. Pretty amazing. And tonight, he had grilled salmon and a salad. Not bad. Last night he had fried chicken - not so good.

Hopefully the rest of the week will go well.

DW

and a good day today

Finally! A good day! Hubby went to an electronics show and I went shopping. Then we went to a movie and out to dinner - had a salad.

At lunch, he packed everything he needed. At the movie, he took everything. What a change from Wednesday.

He dropped the humulin by 1cc in the am and pm. The lowest he has gone was 80. But he is staying high too much. Not sure what the resolution to that one is. I know being high is not good. But I truly hate the lows.

Today was great. If every day could just be like today......

DW

help

Help me find my sanity! I'm going to post what happened - then tell me how I can ever find my sanity!!!

Yesterday. I knew it was going to be a busy day. I probably should have done a better job preparing for the day. But by gum...this is HIS disease!!! And he needs to own up to it - if I do everything for him, then he just blames me when it goes wrong.

I knew we had an education class at cardiac therapy at 1:30 pm. I was going to leave a little early and get over to the medical clinics to have a minor laser procedure done to my eyes. He had cardiac physical therapy from 2:45 - 3:45 pm. And his first grandson was supposed to be delivered at 10 am. So we thought we could drive and hour down to the hospital, see him, then be back by 1:30 pm. No problem.

So, we wake up and he is up, showered and ready to go at 8 am. He has his bag on his shoulder and says, "I'm ready when you are!" And I said, "aren't you going to call your son to see if his wif is in labor?" (of course used their names instead of the relationships I just wrote). So he sat down and called and of course, she hadn't even started. She was being induced and for some reason, hubby and his son think that meant she would deliver immediately. I said, "Sweetie, I want to tell you something and you can do with this whatever you want" He said, "what?" I said, "when my youngest son was due, they induced me. They told me he would come pretty fast. It took another 23 hours before I delivered him. Each woman is completely different. She might deliver quickly, but it could take a long time."

He said, "I'll call him and tell him we're not coming." I said, "why are you doing that?" He said, "it's obvious you don't want to go". I said, "That's not what I said at all. But what I don't want to do is to drive down there this morning, have nothing happen, and then have to drive back down there tomorrow!:"

And he went into the office and went to work.

So I should have known that was an indicator of the rest of the day. But a pretty good example of how he will take what I say and comletely twist it into something else.

We left shortly after 1 to head over to education. He had his bag. I didn't ask what was in it. Didn't remind him of this or that. I had my laser procedure done. More swelling than they thought. Doctor said I might wake up in the morning with my eyes swolle shut. They were about half open when I got done. Walked back over to where he was having therapy and he told me the baby had been born while we were in the education meeting. (found out later she gave 6 pushes - he came pretty fast once it started.)

So, of course, he wanted to drive down to see the baby after therapy. My gut told me not to go. But he insisted. And I knew if I drove home, he would take the car and drive himself....and he hasn't been released from surgery to drive yet. So we went. I had to lean my head back to see out of the slits in my eyes. I just drove slow. We got there fine. Cute baby. For a baby. His 6 pm alarm went off and I asked him if he brought his insulin No.

He took his glucose and he was at 52! (Did he not sense this at 70? 60?) He did not have any glucose tabs. He ran out (why did he not ask me to stop and get some on the way to education?) He did not even have smarties in his bag with him. We are an hour from home. He says, "Let's go to PFChangs!" I said, "no". But then I'm thinking - he's so low, he can't take the insulin, go ahead, get him wherever he wants to eat - get something in him...and PFC was next to the hospital. So we went.

Horrible choice for his current nutrition plan.

He should have packed glucose tabs, smarties, and apple, a peanut butter cup.
He should have taken his insulin with him.

But he didn't

And when he's down to 52, he's not about to make a healthy choice about where to eat.

And I knew if I didn't take him to PFChangs - he would simply make me misearable the rest of the evening with his pouting, or his depression, or his sullen quietness. We've been through this a million times.

Of course, I have huge bandages slanted over my upper eyes, am looking through slits to see where I'm going - and exactly what I wanted to do - or felt like doing - was eating out. I left my sunglasses on the whole time. Didn't need other people staring at me.

We made it home and I went straight to bed. Over exhausted at this point and totally not caring what his glucose is doing. But when he tested again he was low. We had stopped at the store on the way home and he got some more glucose tabs...but he had left them downstairs. So I got up and got them for him. Told him he HAS to lower his humulin both morning and evening tomorrow. Sigh. Why do I have to tell him? Because he's not going to do it on his own!!!

I lay down on my side to finally go to sleep. I took 2 benadryl as my eyelids were starting to itch. I feel a tear running across my nose. Get up and of course, it's blood, gushing out from where they did the laser. I take the dressings off, apply pressure for 20 minutes. Still bleeding. Apply pressure for another 20 minutes. No bleeding. By now, the benadryl has more than kicked in. I decide to adjust the bed to a reclining position and I manage to sleep most of the night - sitting up. I assume his glucose went back up - I wouldn't have been able to do anything for him and he wasn't able to be of any help to me.

So yes, I should not have had the laser procedure done while he is still recovering from surgery. But I had waited months to get an appointment. And it really doesn't matter when it was done - he could have still had a low.

We shouldn't have gone to see the baby after I had laser surgery - but he would have pouted and sulked....or worse yet, gotten in the car and driven himself.

We shouldn't have eaten out. I should have checked his bag. But why should I be the one to check his bag. Why can't he take everything he might need in the event plans change?

I should have checked his glucose tab supply. But why is that my job?

I should have checked his bag for insulin and everything else, but again, why is that my job?

And why is is that he can't figure out that he needs a mid-afternoon snack to keep his glucose up?

Why can't the endocrinologist see that he is still going low 1-2 times a day? And substantially lower his insulin? Why don't they put him back on the oher insulin? Why feed him carbs? Why not reduce the humulin or get him off it? Nasty stuff I think! Why aren't they monitoring him more closely?

Now I need to go chart what he ate at PFChangs and show him how he was 3x more sodium than he was supposed to have for the day! But I woke up with eyes swollen and even less of a slit to see out of and decided that today, I'm staying in bed. I can see find from a reclining position to just spend the day on my laptop. At 3 pm, I can take these dressings off and start my own post op care. I'm hoping if I remain quiet today, there won't be another bleeding episode tonight.

So, how do you care for a diabetic when you have to give 100% of your time caring for your own recovery?

How do you get a guy who is completely stupid when he goes low to retrain his thinking to tell himself during that low than rather than eating out, he needs to prepare and have healthy snacks in his bag with him at all times?

How do you get the diabetic to purchase their own glucose tabs BEFORE they run out?

How do you get a break from being a caregiver to someone who has diabetes???

And you know, I know there are no real answers....but I have to ask the questions anyway!

It's like the education session yesterday. 1 week after the session by the pharmiscists:

1. Hospital nutrition told him to use the entire line of Mrs. Dash
2. Pharmiscist said he cannot have any Mrs Dash that has potassium
3. Nutrition education said to use Mrs. Dash - did not even know some had potassium in them. Had 3 tubs of butter and asked us to determine which was the best. I pointed out that all 3 had potassium in them. I asked what he ws supposed to use for "butter". Her answer...."well, that is a problem, isn't it?"

No one has an answer.....


DW

Truly tired

I don't know how other spouses take care of their chronically ill husbands. I'm not doing so well. I can't keep up with the house, the yard, cooking, groceries.....and helping him out of his hypos.

I've been doing some research on humulin RU 500. From rxlist.com, they say:

deep secondary hypoglycemic reactions may develop 18 to 24 hours after the original injection of Humulin R (U-500)

patients should be carefully observed

prompt treatment of such reactions should be initiated with glucagon injections and/or with glucose by intravenous injection or gavage.

We don'thave a glucagon pen. He is not being closely monitored at all. He's still going low a couple of times a day. But at least it's not continuous from 2 - 6 pm like it was.

And then from wikipedia.org:

affect of hypoglycemia on the brain:

if the amount of glucose supplied by the blood falls, the brain is one of the first organs affected

subtle reduction of mental efficiency can be observed when the glucose falls below 65 mg/dl

Impairment of action and judgment usually becomes obvious below 40 mg/dl

Prolonged, severe hypoglycemia can produce lasting damage of a wide range

The likelihood of permanent brain damage from any given instance of severe hypoglycemia is difficult to estimate, and depends on a multitude of factors such as age, recent blood and brain glucose experience, concurrent problems such as hypoxia, and availability of alternative fuels.

manifestations

impaired judgment
moodiness
depression
negativism
irritability
belligerence
combativeness
rage
personality change
fatigue
weakness
apathy
lethargy
daydreaming
sleep
confusion
amnesia
dizziness
staring
"glassy" look
blurred vision
auomatic behavior
slurred speech
incoordination
abnormal breathing

Hubby has had all of those since heart surgery during his lows.

continuning on, the same website says:

There is no consistent order to the appearance of the symptoms, if symptoms even occur

Specific manifestations may also vary by age, by severity of the hypoglycemia and the speed of the decline.

It makes perfectly good sense that his physicians should be following him closely. So, define "close". Once a day? Once a week? Inpatient?

He has not heard from his primary care physician in over a week.

He has not heard from the endocrinologist in over 9 days.

The surgery team has only called him one time since surgery.

He is being seen 3 times a week by cardiac physical therapy, but they would have nothing to do with his blood sugar lows.

And tonight, I am way too tired to care. Too tired to talk to him about it (like that might do a bit of good?). Too tired to read anyting else.

Diabetes can cause depression in the diabetic. I've read all the reasons why. I believe that it can also cause depression in the spouse and family members. I'm tired of worrying about him. I'm tired of taking care of him. Tired of eating the way he has to eat. Tired of cooking healthy food. If I see another piece of lettuce today I would simply scream!!! Tired of toting all his stuff up and down the stairs every day. Tired of fastening the seat belt when he gets into the car. Tired of opening doors for him.....

The list is endless.

I keep telling myself we only have one more week to go til the surgeon should release him to do some of this stuff.

I wonder if I will make it one more week.

OK, just ignore me - I'm tired.

DW

Weekend notes

Sister and brother-in-law here. b-i-l got a new laptop and hubby helped him program it. Pretty good weekend all in all. Hubby started back to work today, part time, from home. He was exhausted and hoarse by noon. But sticking with schedules, menus and doing pretty good. One low today after PT, so probably from exercising. Will watch tomorrow. Might be time to reduce the Humulin even more. My sister went home this afternoon. She's been here a week. It has been wonderful. She motivated me to get back to my art which has been so much fun. Time for me to move ahead. Hubby is doing more and more. I still have to drive him everywhere for at least another week. Hope the surgeon will release him next week, but he may not be able to drive due to the narcotics he is on for back pain.

I'm starting to feel a bit more rested. This is an easy week. 3 days of PT, I have o/p surgery to remove tags from my eyelids on Wed - and the grandson is supposed to be delivered that morning. Should be a good week.

DW

Pure stupidity- if you ask me!

I let him decide what he wants for breakfast and lunch. So today, he had turkey, cottage cheese and peaches. Hardly any carbs at all. The nutritionist had told him yesterday that he needs 45- 60 carbs per meal and that he should make sure he has them on the days that he has cardiac therapy. I asked him if he wanted more carbs, he said, no.

So, at 2 pm, he was low. He ate an apple. No glucose tabs, of course. And he was low at cardiac therapy.

So how stupid is that? He knows absolutely what he is supposed to do. He knows what he is supposed to eat. He just doesn't want to do it. Or is it a control issue? Or does he just want the attention of the therapists? I sat out in the lobby today - I'm just not going to watch him be stupid. Someone needs to slap this guy up the side of the head for sure!!!

On the way home, I couldn't keep my mouth shut. I told him that if he has a death wish, if he wants to die, let me know, I'll help him out. All he has to do is quit taking all of his meds and we will eat out 3 meals a day, 7 days a week. And if he wants to live, then he needs to do this 100%, not just the parts of it he wants to do.

He said, "yes maam". And I told him not to put this on me. I said that I'm not the person with diabetes or a heart problem. That I am only changing my eathing habits to help him, but I sure don't have to do that. I reminded him that he is the person picking what he wants to eat, not me. I ask him every single meal what he wants. So I have nothing to do with it - it's entirely up to him.

So of course, he's mad at me still. But today, I just didn't care. I'm back to my "good place" where I know this is not my problem, not my disease. I have done a really good job of taking care of him for the last 4 weeks and now it's time that he start taking care of himself. I know he doesn't want to. I know he wants to blame me or anyone else for everything that is wrong. But I'm not going to let him blame me.

He's been given a new chance to live with this surgery. He's just pretty stupid to not do what he has to do. And don't tell me it's hard. I'm eating exactly what his doctors and the nutritionist have told him to eat. So I know it can be done.

DW

A horrible day

Visit to the nutritionist. She said he needs to load up on carbs when he has a low. I said they need to reduce his humulin, he's getting too much. She is sending a note to the endocrinologist to recommend dropping his humulin from 20cc - 18 or even 15 cc. He agreed to drop to 18 tomorrow. He was low again all afternoon.

So why would anyone say to load up on carbs when he has been low almost every afternoon for 2 weeks....I am charting and graphing so much the pattern is quite obvious. The heart surgeon's nurses said when he goes low to give him OJ. That gave him gout. So the endocrinologist said to give him peanut butter, apples, apple juice. Cardiac PT gave him apple juice. I have tried to get him to take glucose tabs for the last 3 years and he has absolutely refused to do so. The nutritionist wants him to take glucose tabs. . He told her today that he would. I wanted to scream my head off.

He came home, had a low, took smarties instead.

She said he should take a glucose tab every 15 minutes til he gets to 70. I asked - all afternoon? I showed her the charts where he has been low for 6 hours at a time....with everything he has been taking. Her answer? Glucose tabs act faster than smarties. Maybe they do. But remember, when he is low, he can't remember anything, can't remember what she said to do, can't remember what's best for him to do and will simply refuse to take what I offer him unless it's something he wants.

Shall I just let him go into a coma???

She made suggestions to increase carbs like putting raisens in his cereal. Of course, she didn't ask if he would do that and I know he hates raisens, so it won't happen. She suggested that rather than eating cockail sauce with the shrimp, that we sautee the shrimp. Probably won't happen either. She never asked him if he was a picky eater. She never asked him if he liked this or that. And it would not have mattered because he would have lied about it.

At one point, she asked him if he would do something and he looked at her, then at me and said, "if she will let me have it". I said, "Don't you dare put this on me!" But what I failed to tell her was that he is has been fixing his own breakfast and lunch the last 3 days - the decision on what to have is 100% up to him. Even when I fix his meals, I ask him what he wants to eat. I have learned over the years if I don't ask, then I'm just working for nothing because if he's not in the mood, he won't eat it. Yet we get into a meeting and he wants to put the blame on me. I just wanted to scream my head off.

We ran out of time. I didn't get to ask her about Mrs. Dash. At the hospital, they told us to not use salt substitutes, but to use all the Mrs. Dash's line. They told us a bout a local store that sold non-salt spices and to go there. Which I did. Yesterday, during the education session on medicines, they told us not to use any Mrs. Dash's products. When I questioned this, they said, "don't use the ones that have potassium in them". OK - but the hospital staff said to use ALL of the Mrs. Dash line.

And maybe that sounds like such a simple tiny problem to many, but this is a huge change in diet for him and he doesn't like herbs and spices - he wants salt.

Then he had the NIVA ultrasound done on his legs and arms. My sister and I picked him up and he wanted to go out for lunch. And I just said, "we better not" and drove home. He has been mad at me the rest of the day. And I mean really really mad! I just don't get it. We go talk to a nutritionist....and he wants to go out to lunch.

I want to give up. I want to quit. I have caregiver burnout so bad. I am sick and tired of doing everthing that I can to help him lose weight, keep his sugar stable, encourage him to exercise.....I have changed everything about how I live....and he gets mad because I tell him I'm not going out to eat.

More proof that he has a death wish?

Then, we were talking about next weeks appointments and I told him that Wednesday will be the worst. He has an education class followed by cardiac therapy and I have a minor outpatient surgery scheduled while he's doing that. He said, "the grandson is going to be delivered that day" and I said that we would be free on Thursday to go see him. Well, he got even madder. Not sure why - I only scheduled my appt to save yet another trip to the clinic. He already had his 2 appointments that day - was he planning on skipping them? He just forgot to mention that to me?

Anyway, it has been a horrible day here. I'm exhausted. Watching chick flicks with my sister and I may just sleep downstairs tonight. I'm just too tired to look at him, see his sullenness, feel how angry he is at me....when all I'm trying to do is help.

Tomorrow is a new day. I'm praying that it will be better.

DW

exhaustion

Tonight, I think I have a new definition of the word exhaustion. But I don't know how to describe it. I don't know when I have been this worn out. I'm not sure that I can physically do another set of stairs tonight. But I have to, to get to bed. It's only Wednseday. How do I make it through the rest of the week?

He was in a low from 2 pm - 7:30 pm again today. Nothing could get him above 52. Apple juice, smarties, bananas, peanut butter...nothing worked.

I think he took too much humulin this morning. They have been changing his dose about every 2 days. I wrote down he was supposed to take 20 - he said he took 22, he thought that's what he was supposed to take. He's on prednisone and should be going high. Instead, he's going low. A 5 1/2 hour low, testing every 15 minutes. His finger tips are so filled with holes it hurts me to look at them. He hurts all over and just feels sick.

I know why I'm worn out. Not to mention running up and down stairs, it's the stress of everything catching up with me right now. The stairs are just the physical part of it....the emotional tireness coming out in the physical activity.

My sister is here helping out. She said she just doesn't know how I do it. I spent 2 hours tonight getting caught up in the charting as we have an appt with nutrition tomorrow. And then he has a 2 hour ultrasound called NIVA. Supposed to look at the vessels taking blood to his back - related to the back pain he is having. He is completely stressed out about having to lie still for another 2 hour test as he knows the pain is going to be more than he can stand. I told him he simply has to ask them to manage his pain.

There are days like today that I think I no longer have a life of my own. I have no time to do any of the things I did pre surgery. The good thing is that I don't have much time to think about what I've given up or why, and less time to get angry about it. Way too tired with no energy left for anything.

DW

The ups and downs of post surgery

Yesterday morning, he took 22 cc of humulin and he was only supposed to take 20. I was wondering why he got confused...and then remembered that this can happen post surgery. So of course, he had a couple of major lows in the early afternoon. And I don't think he recognized them coming on. So I am ever so grateful that he is now testing on a very regular basis.

He was pretty depressed most of yesterday as well. But today, he woke up in a much better mood. He actually did his 30 minute exercise without a reminder. And he maintained his fairly good spirits most of the day.

We got a call from vascular therapy that he has been referred for a NIVA - non invasive vascular assessment for his spine. And then a consult with that department once the ultrasound is done. A 2 hour ultrasound! That should prove interesting since he can't stay in one position for more than about 5 minutes without pain.

The gout infection has cleared up and he is finishing up the rest of his prednisone burst. I am so far behind on charting, but will get that caught up tomorrow.

My sis is here visiting this week and I'm getting some much needed "therapy". She is working hard to get me back motivated to do some art, so that is great.

All-in-all it was a good day today. :o)

DW

Post-surgery emotions

I had been warned that open heart surgery can completely change a person's emotions. And that for the first 2 years post surgery, there can be lots of emotions, depression, etc. But I just was not prepared for what he did Saturday morning.

I woke up and was working on my laptop in bed. It was almost 9 and I decided I'd better wake him up. So I called to him and he didn't answer. I called again. So I turned the light on and he didn't move. He wasn't moving. I got up, talking all the time, telling him it was time to get up and still no movement. I put my hand on his shoulder. I really thought he had gone into a coma. I wasn't going to panic, but I was already thinking about what to do - call 911, or stick OJ down his throat. I started to take his CPap mask off and he grinned.

I just burst out into tears and came downstairs and cried so hard. I didn't know whether to get madder than I have ever been at him, or just give up.

He did this once before when we were at a friend's house and he promised me he would never ever do it again. So I know I can't ask him to promise me that again. He is not capable of keeping a promise. He came down and was truly sorry. But I said to him that he can't possibly understand what he just put me through. I said that I had sat in that surgery room for 8 hours, praying non-stop for him. That I had gotten everyone I know in the entire world to pray for him. And now, he can merely joke about it and act dead?

He agreed that he can't know what I'm going through. We didn't talk for the next few hours. It wasn't a tense silence at all...it was a remorseful one. I know I can't change him. I know that he will never understand how much I love him. And it simply pains me that he doesn't love me enough, that he doesn't care for me enough to keep me from this kind of needless suffering.

When he does go into a coma I will probably just stand there and punch him to death. It's going to take something for me to ever believe he is in a coma at this point. And I explained that to him. But he just doesn't get it. He doesn't see how fragile life is right now. I think he doesn't care.

And I thought I was worn out before? I had nothing to give him or anyone else all weekend long. I was just completely drained. And he doesn't even understand that.

I don't want to stay, but I know I can't leave. He can't even drive himself to the doctor's right now.

I want to hurt him so much. I want to make him feel this pain. This utter sense of violation. This sheer hopelessness. But I don't think I ever can. And then I feel guilty for wanting him in more pain after what he has just been through.

And no, he was not in a sugar high or low....he just was not thinking about how his actions might affect me so soon after surgery.

So then yesterday, he was depressed all day long. And I'm not sure why. I think it's because his son had invited him to attend Easter sunrise services at their church and we, together, had decided it was not the best thing to do, that it would be too much this close after surgery. The church is about 18k people, the services are outdoors, early, cold, and quite a long drive from here. And I still think the decision to not go was the healthy choice, but he was depressed all day long. Wouldn't talk. Wouldn't smile at anything. Just sat and moped all day long. Sigh. I don't know which is worse. That deep of a depression, or risking the outdoor elements to go to a church.

Here's hoping the week improves.

DW