Calvinnme wrote:

Well, I'm a diabetic, not with nearly the problems your husband has - yet. Although I don't delude myself and say I'm normal as long as I take meds, I know the disease will progress, just hopefully more slowly. About his hunger, let me just say that many of us diabetics live in a "prison of hunger". It doesn't matter what he eats, his insulin by definition does not get used by his body effectively. So there he is, his blood awash in unusable insulin and sugar that will not go into the cells, so he might as well be eating cardboard. That is why he is so hungry. The thing is, and I'm sure you know this and he knows this too, is that weed makes you hungry. So he is just compounding the problem by using it. Maybe he is just in such a state that he would just rather check out mentally than anything else. It is a disease of hopelessness, since there really is no cure, just decline, no matter what the diabetic does. So I can imagine that nobody who has been through it as a caregiver ever on What's next?

Thanks for writing.  Yes, I understand the mechanics of insulin and the whys of his hunger.  Yes, I know the weed is giving him the munchies and making him hungry.  It doesn't make it right.  It doesn't make it easy to live with.

In some ways, I am lucky.  He's been around way longer than I ever anticipated.  :)  In other ways, being a first hand witness to the slow decline this disease causes in the body is horrifying.  The good thing is that it's making me want to be healthier!

My sis and I started a chair yoga class today.  Boy!  Did I feel it!  I realized just how out of shape I am.  You can walk every day and still not use the same muscles you use in yoga.  We also did some of the machines at the gym.  I'll probably be dead tomorrow.  Should I just say "goodbye" now?  ha ha!

So, I went to the grocery last Wednesday to stock up for Thanksgiving weekend.  On the spur of the moment, I bought a large bag of plain potato chips and a large bag of BBQ chips.  I thought with all the leftover turkey and ham - it would be good to have some chips to go with sandwiches.  I went to look for them tonight and they are both gone.  I asked him and yes, he had eaten them! ALL OF THEM!!!

There is no budgeting food in his mind.  No eating in moderation.  No "save it for tomorrow" - that's for sure.  But the bigger problem is that when I look for chips to go with my sandwich.....there's nothing to be found.  And that just pisses me off!

Do I actually have to hide the potato chips?  LOL!  I do have some empty storage bins in the garage.  Perhaps they will have to go in there for now!

I have taken every ounce of sugar and sweet out of the house.   I try to keep eggs in the refrigerator in case I need them for baking - that has become nearly impossible!  (Remember the day he fixed 6 eggs for breakfast?)

I am going to start back in on Weight Watchers.  I will be buying my own food, fixing my own meals.  I am praying that he keeps his hands off of the WW items.....but I have a feeling that's not going to happen.  It's funny because WW is rolling out a new plan next week and from what I've read, there will be more zero/free points food items.  What amazes me is that no one believes that every item you put in your mouth has calories.  Even if it's "free" - if you consume 3000 calories a day in "free" foods - you will gain weight!

I'm living with a guy who thinks everything is "free" food!  And that he can eat an entire bag of potato chips in one setting.  Or that he can continue to eat 3-4 drumsticks (ice cream) every single day.  So I'm done.

But let's rethink this for a moment.  He has the munchies.  He is hungry all the time.  Yet his stomach is not digesting the food.  The doctor gave him some anti-nausea pills which are keeping him from vomiting.  But the food is still sitting in his stomach undigested.  This is  called gastroparesis.

What are the complications?

Gastroparesis can make diabetes worse by making it more difficult to manage blood glucose. When food that has been delayed in the stomach finally enters the small intestine and is absorbed, blood glucose levels rise. 

If food stays too long in the stomach, it can cause problems like bacterial overgrowth because the food has fermented. Also, the food can harden into solid masses called bezoars that may cause nausea, vomiting, and obstruction in the stomach. Bezoars can be dangerous if they block the passage of food into the small intestine.

Well isn't that great news???  His glucose is going to get even more out of control.  And the bezoars? Heaven help him!

How to fix it?

Control glucose
Change diet

And the chances of that happening?  Ok, we already know that's not going to happen.

For me, it's an ongoing education to try to stay one step ahead of his symptoms, what's causing them, whether there's anything I can do to help him and if I should mention it to him.  But it doesn't consume my life.  An hour or 2 of research a week.  The rest of my days are spend living what I hope is a fairly normal life.  And now adding in the gym and a weight watchers diet with meal planning - I might just be so busy I forget all about his diabetes.  Until I hear him being sick.

To all the caregivers out there, whether it is diabetes of something else, my heart really does go out to you.  I truly know what you are going through.  I know there are tears and I know there can be great moments of joy with the one you love.  There are moments when you want to walk away and times when you feel guilty for having those very thoughts.  Periods of great anxiety and the same for being annoyed at the disease.  It's not easy.  Just take it one day at a time and when you can't do that, just take it one moment at a time.  Do things for yourself.  Take breaks.  Read a book, watch a movie, go for a walk, eat your own ice cream while sitting in the car at the park (yep, I've done that a couple of times!)  And pray.  Ask the Lord to bless you.  Don't wait for someone else to pray for you.  Just pray for yourself.  It does help!

Here's hoping that as your year winds to an end that there is peace in your life, joy in your heart and faith in yourself!

And to calvinnme, I will pray that your diabetes never gets as bad as what we're living with!

DW

What's next?

I often wonder "what's next" as I have never lived with a diabetic and most people who are at this stage in the progression of the disease simply don't write about it!  So today's post is going to be about the daily trials of living with this disease.....when you are the healthy one!

Yesterday, he fixed SIX eggs for breakfast!!!  Then he went to Burger King for lunch.  THEN....he order Chinese takeout for dinner!  I was gone most of the day and asked him what he'd eaten when I got home last night.  In my mind, a normal person doesn't eat that much food in a day!  He said he was hungry.

So what causes hunger at this point?  I know he has told me that he can't taste or smell anything.  And he doesn't eat like that every day....but he does eat a ton of food.....that he supposedly can't taste or smell.

He is up most nights sick to his stomach or with diarrhea.  The gastroenterologist has refused to see him until he stops eating/smoking marijuana for 3 months.  But I am assuming that the nerve endings in his stomach have stopped working, food doesn't get digested, and when it sits too long, it has to come up and get out one way or the other.

And I cannot talk to him about anything after 6 pm because that's when he starts eating his mj edibles and smoking his vaporizer.  He is in a mj fog from that point on - but he says that it eases his pain and it's the only way he can get to sleep.

Sleep - that ever eluding issue.  Most of acknowledge that as we age, we sleep less.  I think it's a natural progression.  He doesn't!  He will turn his lights out at midnight, but says that he gets a couple of hours a sleep a night.  I wake up often and will hear him in his bathroom.  So I don't think he's sleeping much.  He has fallen while getting out of bed twice this week, and we know from the last doctor's visit that his balance is really bad.  I asked him if he wanted me to get a walker and set it next to his bed at night to help him get up.  Well, we'll just say that was the wrong thing to ask and leave it at that!

In the mornings, he will sleep til 9:30.  That is my absolute limit.  If he is not up and moving by 9:30, I go in and check on him.  Remember how you would lean over your baby and listen to see if they were breathing?  Who knew you did that at this stage of life?  But I have to.....I worry every morning until I hear him moving around.  Yet at the same time, I know he needs as much sleep as he can get.

Daytime napping.  It seems that more often than not when I go to his room to ask him a question, he is laying across the bed, dozing or sleeping.  Probably more dozing than sleep.....but still, he is not doing anything.  TV is on.  Pups are curled up next to him.

Exercise.  Nil.  Nadda.  Zip.  He used to take the pups outside every 2 hours.  We have a motion activated security camera outside and it records all movement.  Yesterday, he took them out twice!  And that is all the exercise he gets.  Other than walking 20 feet from the bedroom to the kitchen.  How an anyone function on that little movement?

He was sitting in his chair last night and I just happened to notice his stomach.  It was very odd looking.  I'm not sure, but almost bloated?  And usually your stomach is quite soft while his was extremely hard.  So something is going on....and I have no idea what....or what to expect next.

more on the distended diabetic stomach here

And then I think for a moment - if I ate everything that he ate yesterday, my stomach would probably look like that as well!

End Stage Renal Failure is a quandary to me.  Uncontrolled diabetes is a mystery.  His unwillingness to care for himself will forever befuddle me.  I have learned that I can't ask him if it's his diabetes because he will become very defensive.  I can't make a statement that the nerve endings in his stomach have probably died off o his stomach isn't processing what he eats....that will only wake up the rage inside him.  I can only be sympathetic to his symptoms, offer to drive him to the doctor, tell him that I'm praying for him (and that often upsets him) or just remain quiet - which seems to be the path I take more and more.

As I sit here writing this at 7:47 am, I wonder if he made it through the night.  I haven't heard him move yet this morning.  But I remind myself that it's not 9:30 yet....I have to wait.  And then I ponder if that is what I'm doing - waiting for life to end.  Waiting for this horrible, horrific, terrible, awful disease to take it's toll?  What have other's done when they were at this point and were the caregiver? Who did they turn to that might understand?

I can fully sympathize because when this is over, I think I will block it from my mind for the rest of my days.  I can see where I wouldn't want to say another word about it, help another person, lend a sympathetic ear....I would just want to completely and totally erase it from my life forever.  And that, I fear, is the main reason why there is so little support for those of us who are healthy caregivers living with a non-compliant diabetic who just doesn't care.

So I get up each day and have plans for my life.  I'm probably gone too much, but I have to get away. I never cease worrying about him whether I'm here or not, so I might as well continue to live a productive life to the extent that I can.  Always asking myself, "what's next?"

DW

Life goes on, doesn't it?

Seven weeks since my son passed away.  My life stopped for a moment.  But there's been time to heal.  Time to move on.  I had been so worried about my other son and he finally came around.  We spent a few days together creating a small memorial garden for the son who had died.  We painted a bench, put up some decorative fencing, added huge stones, some gravel and a lot of plants.  I had previously made fairy gardens in a little red wagon and in a child's sized wheelbarrow and we moved them into the memorial garden.  We planted a dozen "forget-me-nots" and then painted a rock that said, "forget-me-not."

My son sat on the bench and cried his heart out. We had a private memorial...just the 2 of us.  It was all quite healing.  And it was good to see my son coming out of his grief.

Hubby has been quite compassionate and "normal". Oh - he is having plenty of lows and these days, when he starts to go low, he goes dead white so it's easier to recognize them.  He had one today.  He didn't give himself any insulin this morning as his sugars were at 110.  He had breakfast.  But at 2 pm, he was white as a sheet.  So we ate.  And then he was fine.

This just tells me that his glucose is still completely out of control.  But at least I recognized it today. His attitude has been in check for the most part.  His labs are not good, but they haven't declined in the last 2 months.  OK, that's not entirely true.  They seem to go down by 1 point each time he takes them which is monthly now.  So in a year, we will look back and see what the overall changes have been.  I swear the guy will eat 4 ice cream drumsticks a day!

And don't get me wrong.  We have had our arguments, fights, battles....mostly over his glucose levels.  And his diet.  And his A1C.  He thinks if it's at 9 and it stays at 9, he's doing great.  I think I've gotten to the point where I just roll my eyes when he says something like that!

I still want to escape, to run away, to buy an RV and just travel anywhere but here.  However I have noticed something in the past month....he wants to go everywhere I go.  If I run to the bank, post office and grocery....he will go with me and sit in the car.  Today we drove and hour to get to a shop I wanted to go to.  He sat in the car.  I asked him why.  He said, "it's just as easy for me to sit in the car as it is to sit at home and I'm not alone."  I have to wonder if he's starting to get afraid to be alone.  He has often said that his biggest fear is that he will die alone.

And all I want to do is to be alone!  LOL!

We have completed all of the paperwork on palliative care.  We are waiting for the doctor to sign off on it and the nurse to return it.  Have I written about that?  Palliative care is fairly new.  If he goes into a coma from a glucose low or high I do not call 911.  I leave him where he is and if he doesn't come out within 30 minutes, I call palliative care.  They will send a nurse out to the house and set up hospice care.  If he wakes up, that ends until the next episode.  But I am off the hook and do not have to call 911.

It had become a burden to me because he has always said that he doesn't want me to call 911.  But I feel there's a responsibility that I shoulder....that I would not be able to explain why I didn't make that phone call if he died.  Now....I have the paperwork that says I'm not to call 911.  And that helps.

I was totally set back that he checked the block that he doesn't want any assistance at all.  There was a separate block for tube feeding and he even declined that.  I'm not so sure I agree with that but it is his choice.  He probably wouldn't last long with no feeding, no fluids, no assist at all.  As I understand it, we are among the first (and probably the few) who are setting this into place.  But he has spoken at length with his doctor, the nurse and me and this is what he wants.  At least I no longer have to struggle with the responsibility of making a call.  (Yet I still think the automatic reflex is to pick up the phone and dial 911, so we will see how I do in the event something happens.)

I have gotten back to my art classes, to some genealogy research, and my days seem to be flying by.  I ignore most of the hiccups that get in my way and just trudge along.  Life does go on, even when you think it had stopped....it was just for a moment.

DW

My youngest son

age 33.  A lifetime of grand mal seizures that could not be controlled by medications.  He had a major seizure, crashed on concrete, split his skull wide open.  He was probably dead at the scene, but they kept him alive, put him on life support and he succumbed last night.

I am still simply numb.  Can't think.  Can't process it.  Can't function.  Completely unexpected.  But it wasn't.  I have known since the day he was diagnosed with this disorder that he would most likely die from a seizure caused accident.  Still - you are never prepared.

I have another son who is 38 and when I told him, he was devastated.  Beyond broken.  So now I am very concerned that he might commit suicide.  I could not handle that.  I think I would simply stop breathing.

My son's seizures have an unknown etiology.  They was no spike in his brain waves so he was never diagnosed with epilepsy.  He was always on the highest dose of dilantin with other meds since he was 16....nothing ever controlled the seizures.

He had his first grand mal seizure when he was 8 months old.  The day after he had his first DPT shot.  Of course, we had not clue and continued to give him the series of DPT shots required.  I have long suspected they are the cause of his seizure disorder as he was perfectly healthy prior to that day.

As he grew older, the seizures grew greater and the more meds they put him on to try and control them.  The idea was to slow down the brain waves to prevent the seizures.  But that also slows down every other brain function including learning.  He never progressed beyond the IQ of a 5th grader.  There was brain damage in some of the areas of his brain by the time he was 16.  They could not tell me if the damage was due to the seizures, or if it had always been there and that's what caused the seizures.

When he was about 17, we were at Walmart.  He had a seizure that caused his entire body to fall against a huge shoe rack and it tumbled over.  The force of his body when he was in the middle of a seizure was always something to witness.  He had no control.  Most often he was unconscious while his body contorted and flew in every direction.

But now, all that is over.

I found out just how well my tear ducts work.  I don't think I stopped crying for 24 hours after I found out he was on life support.  He was about 1200 miles away and I could not get there before they were going to disconnect him.  He is the child of a previous marriage and his father and 2 half sisters were with him.  I was here with my other son.

Nothing in life is easy, but this was devastating.  No one should lose their son.  But I know it happens way too often.  I am comforted that he is no longer in pain and that there will be no more seizures.  My heart has been shattered and I know that I will never be the same.  This makes diabetes look like a piece of cake.   And yes, I know that it's not.

We have been remembering the funny little things he did as a child.  Going through photos,  pouring over memories.  We will heal in time.  But we will never be the same.

Please pray for my older son that he can pull through this.  He is not responding to texts or phone calls.  I am praying that he just needs some time alone.

I know I'm still in shock.  I know the phases of grief.  Perhaps if there is an ounce of good is that I am old enough and have gone through enough loss in my life that I understand what has to happen and I know what to expect.  Not unlike grieving the loss of good health when one is diagnosed with diabetes or any other problem.

Much love to each of you.  Hug those that you love.  You just never know when it will be the last time.

DW

Horrible morning

I went to Walmart Friday and when I went to open the back seat door to put my groceries in the car, the entire door handle fell off!  Yes....the ENTIRE handle!  I just gasped!  It was so unexpected and happened so easily.  The Ford dealership was on the way home so I pulled in and the kid told me to bring it in this morning which I did.

Apparently, in the last recall, they replaced the rear door handles due to a recall and they didn't get the clip in right so the handle fell out.  I think that recall was several months back.  Anyway, they got it finished and called and hubby ran me over to get my car.  We decided to meet at a local family run restaurant for breakfast.

Got there and I ordered.  He ordered biscuits with gravy, but asked to substitute hash browns for the biscuits (it's on the menu that you can do that).  Brand new waitress - I think it was her first day, so she asked him to clarify what he wanted and he repeated.

About 5 minutes later, she came back to the table and asked again for a clarification.  Her supervisor was with her and I think she got it that he just wanted hash browns with gravy.  I could see that he was getting agitated.

And then, she asked him to repeat his order AGAIN!!!  Well, that did it, he threatened to leave, she and I tried to calm him down and she left to put the order in.

Of course, it came to the table - biscuits and gravy....with EXTRA biscuits!  No hash browns.  I just about died and he blew up.  I mean, he literally just blew up.  He was swearing at the waitress.  She had brought the check and she wanted to take his food off it and he wouldn't let her.

I just sat there.  Ever so quietly, I said, "why don't you just go home?"  He just sat there not eating and then he said, " I can't eat, I'm sick to my stomach now."  So I said, "then you need to just leave.  I'll pay for this, just go."  And he did.

I finished my meal and got up to go pay at the counter.  And older woman who had been sitting behind us came up to the counter and said, "He is the most horrible man I have ever seen in my entire life."  I should have just agreed with her, but instead, I said, "You never know what another person is going through."  She said, "There is no excuse for his behavior."  I just walked out.  I did leave the poor waitress a nice tip.  It's the least I could do.

And then I drove to my sister's.  I could not come home.  I told her what happened and she reiterated that she thinks it's time I leave.  I agree.  It is.  But it probably won't happen right now.

I did finally come home.  He didn't say a word to me.  After a bit, I went to his door and told him that I needed to run to the bank and asked him if he needed anything while I was out.  He said, "is something wrong?  did I do something else?"  I said, "No, it's the woman who came up to me after you left and said that you were the most horrible man she had ever seen."  He said, "I had every right to get mad."  I said, "yes, you had every right to get mad, but you had no right to respond the way that you did.  It won't happen again, I've decided that we're not going out to eat for quite some time."  He didn't say a thing and I left to run my errands.

He did have every right to be upset.  Extremely upset.  He told the waitress 5 times what he wanted and she still didn't get it right.  But he had no right to throw a hissy fit - to act the way he did, or to say the things that he did.  I cannot excuse his behavior.  I should have just walked out when she couldn't get the order right after 3 tries.  My mistake for staying.   But in my defense....I was hungry! LOL!!!

So, it was about 9 am when all this happened.  Was he still in his marijuana hangover???  Did he take his morning insulin? If not, was he low?  I will never know.  But something was way off.  And I  really don't know how much longer I can live with this.

No one should have to sit in a restaurant and watch their husband behave like a 3 year old throwing a temper tantrum.  I have no plans to ever go out to a restaurant with him again.  We can leave it to fast food drive throughs.  I am so worn out.  "Weary" is the term I said to my sister.  I'm just "weary".

Second issue:  Yesterday, I noticed that the fronts of his shins were red.  There are  4 sores on his shins.  I asked him if he had bumped into something and he said he didn't think so.  I started doing some online research and it's probably poor circulation in his legs.  But he said he's not going to the doctor for that.  He really thinks he's just been bumping into things.  Guess we'll keep an eye on his legs and see what happens.

Third:  There are no guidelines for dealing with Stage 4/5 ESRD.  Nothing for the caregiver.  No helps.  No inside scoop.  No groups that I can find online for support.  I am going to guess that by the time the end arrives, the caregiver is so exhausted they do not ever want to hear the word "diabetes" again in their lives.  I am getting there at rapid speed.  But I pray that what I write, what I go through, how I deal with these issues, the unanswered questions that I ask....that somehow, they might serve to help someone else going through the same or similar situation.  God bless you if it's you.  We all need a blessing!

DW

Diabetes - a death sentence

The last time I posted, we had just been to the nephrologist.  I wrote this:

Gave him 3-5 years before he will need dialysis.  That's interesting because only 2 years ago he was told that he needed dialysis then.  I think this just confirms to me that labs really can't forecast what you do and don't need as they can quickly change for the good or the bad.

Could I have been in any more denial?  I think it finally hit both of us that that's exactly what we did - we made up excuses to "prove" the doctor was wrong.

So what if he only has 3 - 5 more years before dialysis?  And what if he still doesn't want dialysis.   Is that a death sentence?

It sure makes you look at life a bit differently when there's a time frame put on what's left to it.

We have been talking a bit about what he might like to do, changes he would like to make, bucket list items to be done.  Right now he says he doesn't want to change a thing.  I'm fine with that.  As long as he keeps his emotions, anger, reactions, etc., under control.

So a few more things have happened.  The Nephrologist called and said that he had talked to the gastrointestologist  who will not see him until he has been off all marijuana for 3 months.  Because it could be the marijuana that is causing the nausea and vomiting.  He said he would not do that as he has no other means of pain management.  (which is true.)

I reminded him after 2 weeks that he needed to get his labs done.  He has decided that he's not going to get labs right now.

What on earth am I supposed to do?  Keep notes for one thing.  Keep this diary going so that I can go back and remember why he didn't do labs when he was supposed to do them.

I suppose it's a catch 22.  He's going to die.  Why keep doing anything  other than what makes you as comfortable as possible.  I am NOT happy with his use of marijuana....but we happen to live where it is legal and there is not much I can do about it.  I did tell him that I thought he should stop using it for the 3 months and see if it cures the vomiting.  At the moment - he'd rather put up with the vomiting.  I wonder what will happen when he rips his esophagus out?  I just shake my head.  He is such a brilliant man.....until it comes to something like this.

At least he told the nephrologist that he was using marijuana so that is finally in his medical record.  Mostly edibles.

The coughing continues.   About the same.  Dry hacking type cough.

Just got back from spending a 2nd 3-day visit with my sister who's husband has lung cancer.  He just started chemo via a pill.  Diarrhea which is "chemical waste" so she has to dress like a hazmat crew to clean it up while protecting herself.  There are some things much worse than diabetes.

DW

The Nephrologist

Yesterday we drove 3 hours to visit a nephrologist.  Kidney specialist.  I liked the doctor.  He spent 2 hours with us.  I don't know that the hubby will do anything he was told to do, but he will now get labs done every quarter.  That's great.

The doc changed some of the meds, added some new ones.  Gave him some anti-nausea meds.  Said that he probably has gastroparesis (which I thought might be the case) and that's what's causing him to vomit so much.

His GFR has improved from zero in 2011 to 44 which is incredible.  Is is the marijuana?  I've read that it helps treat kidney disease and diabetes.

The main problem is the protein in the urine.  30 is good.  300 is horrible and he was at 2300, but it is now down to 1100.  Still extremely bad.  The kidneys simply are not functioning properly.  His BUN has also increased.  So more meds for that.  Wants him to stop diet coke.  Wants him to drink a gallon of water a day to keep the kidneys hydrated.  That probably won't happen.

Gave him 3-5 years before he will need dialysis.  That's interesting because only 2 years ago he was told that he needed dialysis then.  I think this just confirms to me that labs really can't forecast what you do and don't need as they can quickly change for the good or the bad.

As an aside, he apologized for the other day and agreed that it wouldn't happen again.  He doesn't want to split up.  Again - more evidence of the non-stop roller coaster ride in my life.  I pray that these drug changes can smooth out the emotional ups and downs he is experiencing.

Life will never be normal.  I just try to get through one day at a time.  I'll be gone the rest of the week as my brother-in-law has just been diagnosed with lung cancer and I'm going to go visit them for a few days.

DW

I'm so tired of all of it!

Think about my last post.  He dropped his concentrated humbling by 75%.  i should have anticipated problems.

Highs.  Lows.  Rollercoaster emotions.  Outbursts.  Sleeping.  We've had it all these past few weeks.

Today he got physical in his rage.  He grabbed me.  Tried to prevent me from going through a door.  After he calmed down I explained that was a red line for me.  I explained that he will never touch me again when he is angry.  And if a single bruise appears, I will report this incident to the police.

He wants me to sell the house.  I won't.  He wants to separate which is fine with me, but he has to be the one who leaves.

I'm pretty sure he will apologize in a couple of days as usual, but if he doesn't, I'm fine with that.

Something pretty much died today when he grabbed me.  We will see if we can recover from this one, but the man seriously needs help.

And I have to ask myself if he was loaded on marijuana.  He is a serious user and I don't think that helps a thing when his insulin gets so out of whack. 

He is not well.  He is so angry.  Nothing makes him happy.  And I know he physically hurts and constant pain can make you crazy.  What he has to understand is that he cannot take it out on me.

I left and went to my sisters for a few hours.  Gave him time to cool down.  I will give this a couple of days and see if he's serious about leaving, but there's going to be an understanding that threats and anything physical are off the table.  Just not allowed ever under any circumstance.

We just found out that my brother-in-law has lung cancer and may not have a year left.  I really don't know what triggered today's outburst but it always seems to happen when I least expect it and I'm so tired of it.  At least give me some hint that an explosions about to happen!!!

DW

Dropping insulin again

Last night, he told me he is now taking 10 units in the morning and 10 at night.  Two weeks ago, he was taking 40 units each.  That is a substantial drop....paralleling his drop in food intake.

(remember he uses Humulin R U 500 which is a concentrated insulin that is 5 times the normal insulin).

He has to drop the insulin in order to prevent the severe lows.

Yet he is only testing morning and evening.  He still refuses to prick before and after meals.  Said that his glucose is running between 120 and 240.  Hmmm.

His crashes - he goes down to 40 or lower.

I need to keep current with this type of posts so that there's a record of the changes.  He does not seem to have lost any more weight.  But it's possible that because I see him every day, I'm not noticing.  He says he hasn't lost any more.

DW

Palliative care and loss of appetite

It's summer and life is in full swing.  I'm keeping quite busy but thought it was time for an update on the diabetes front.

We had an interesting visit with a palliative care nurse from our HMO.  Palliative care is pre-hospice. We had gone to see the Endocrinologist and I asked a simple question:  Who do I call if he goes into a coma?

He does not want to go to a hospital.  He does not want dialysis.  He does not want a kidney transplant.  So when something happens, who do I call?

By having palliative care set up - I can now simply call Hospice and they will take over his care if he is in a coma.  Here at home.

He has his periods when he is doing just fine.  I think he will live to be 90 years old!  But then there are other times like now.

He is not eating.  He's lost his appetite.  So he was having middle of the night sugar crashes with intense cramping.  Because he was still taking his full insulin levels....while not eating.

He has cut his insulin in half.  (Humulin R U 500 concentrated).  Was at 40U each at morning and night, now at 20U each at morning and night.  His Endo told him he could adjust by 20%.  He's adjusting 50%.  I think he needs a return visit.  Not part of his agenda.

He lost about 20 pounds, but nothing since.  Eating half of what he did and not losing weight.  Those numbers don't add up.

We are finally seeing a Nephrologist the end of next month.  Only took 6 months to get in.  Sigh.

Adjusting the Humulin has stopped the night time lows.  That's good.  He said he is working to get himself back on even keel.  I wonder if that's possible.  With no appetite, he no longer wants to go out to eat.  He has no joy in cooking so that is falling more and more on my shoulders.  But if he doesn't want to eat, what do I fix?  Interesting quandary.

He seems to still like ice cream drumsticks.  Can one live on those?  Probably not!

Am I concerned?  Of course I am!  What can I do?  Not much at the moment.  It is his decision to seek medical advice - to go see his doctor.  I recommend it just about every day.  And he declines.  He is still making the decisions about his life.  I watch and I wonder.  :)

So I try to live as normal a life as I can.  What is normal at this point?  I'm content with gardening and art classes for now.  He is holding his own and I really think he will bounce back out of this....but at the same time I'm trying to prepare both of us for the next phase of this disease.

DW

Midnight cramps

He is losing his sense of taste.

He is losing weight as he is not eating.

Last night he had severe cramps in his feet and legs.  He could not get out of bed.  His cell phone had fallen to the floor and he could not call me.  Then he had a sugar crash - due to anxiety?  He said that he finally managed to get up, take some glucose tabs, walk around and started getting better.  But he didn't sleep at all.

So today, he is exhausted, scared, frustrated, upset and hurting.  I suggested a call to his doctor and he declined.  So I'm keeping busy outside with gardening (tis the season!) and trying to keep things quiet for him.

I feel so bad for him.  Yet I know there's nothing that can be done.  I think if he'd call his doctor, they might do something for his pain.  But if he won't call the doctor - what can you do?

Tuesday he had his eye exam.  The cataracts are growing, but they didn't think a surgeon would touch him (he has cornea transplants in both eyes).  They are fitting him with a new contact lens that is deeper and larger in the hopes that it will stay in his eye and not pop out.  Then he just waits until the cataracts cause enough problem that they have to try surgery.

He had labs done that day, but he's refusing to look at them.  Sigh.  I would at least like to know if things are the same....but he doesn't want to know.  So I'll wait and see if the doctor calls him to come in for a visit.

Life with a non-compliant diabetic is not fun, that's for sure.  I know - I'm such a bundle of joy today!  So - on the happy side of life - I'm busy with 2 watercolor classes.  Have 2 fountains and the pond up and running.  Am putting up a decorative fence around the front yard.  And the list of things that I need to get done is a mile long so plenty to keep me outside as long as the weather holds nice.

I think gardening and painting balance out the sickness in the house.  Life is good!

DW

Back home again

Life is amazing.  My sis and I had an incredible trip and then jet lag for about 9 days!  All recovered now and life is back on track.

Hubby did ok - but he has started losing weight.  Now - he is a rather large guy at about 270lbs.  So he could stand to lose some.  But not like this.  In the 2 weeks I've been home a few new developments and I'm pretty sure they are all linked to Stage 4 ESRD.

The smell of food makes him nauseous. We walked into a restaurant in a town about an hour away and he was perfectly fine, but the moment he smelled the food, he got sick to his stomach.

He is only eating about half of his meal and then he feels sick.

But he will eat an entire box of fiddle fade (like cracker jacks) at one time.  That stuff is completely loaded with sugar.  Just what he needs!

He is experiencing a lot of diarrhea and stomach problems.

He cancelled his appointment with the endocrinologists and has not rescheduled.  Says there is no point in going.  I argued that they might be able to help him with ideas on palliative care.

His cataracts have grown to the point he thinks he is legally blind.  He was supposed to go to the eye doc this week, but they cancelled so now rescheduled for May.  In the meantime, I will be doing all of the driving.

His back is causing him a lot of pain.  And I wonder if that pain could be attributing to the nausea.

It is sad to return after being away for 6 weeks and see the decline.  Yet I know it has been going on all along - you just don't notice the little things when you are with someone 24/7.

Sis and I walked 9 - 10 miles almost every day.  Even on an "off" day, we would walk 4-5 miles.  It was a bit of a rugged walk at times going up and down primitive trails.  So my knees, hips, thighs are in pretty good shape.  We are back to walking 4 miles 3 times a week here.

And now, spring yard work starts so that will keep me busy.  We just picked up new fence (metal decorative type) to add another fenced section to the back yard.  Two of my sisters have started coming over a couple times a week to work on making jewelry.  Today we are going to attempt some sterling silver soldering.  We've all had classes in the past so it's time to refresh our skills.

Just thought I'd update as this blog serves as a record of his progression with his diabetes.  I think overall, he's doing pretty good.  Yet I know that it just takes something quite minor to cause a problem.

DW

what would you do?

Yesterday afternoon they buried my ex-mother-in-law.  My son's grandmother.  I did not go to the funeral or graveside but my son (age 38) texted me about 4pm that everyone had left and he was still there.  He said he just wasn't ready to leave yet.  I asked if he wanted me to come sit with him.  He said yes. So I sat and shared as many memories of her life as I could.  Pretty soon, he started telling me things that he recalled from his childhood about her and we were both laughing.

He was so incredibly close to her, loved her so much, and this devastated him.  She had been in a near vegetative state in a nursing home the past few months and we all expected/anticipated her passing.  Still, when it happens, it's not easy.

She was a truly wonderful woman.  She always treated me like her daughter - always welcomed me into her life.

After about an hour of sitting on the ground, talking with my son,  4 cars came back into the cemetery.  He had told me that everyone had gone back to the funeral home for a dinner.  Out of these cars stepped my ex-husband, his brothers and his sister.  I had not seen the ex in 20 years and did not recognize him until he said my name.  What a shock!!  I had seen the siblings in the past few years and knew them immediately.

The ex and I are amicable - we just live in different states and have no reason to run into each other.  So we chatted for a bit.  He said that he got in the night before and was leaving this morning.  I thought, "how odd - your mom just died."  Then he explained that he and his wife were leaving for Cancun on Saturday and they had to get back home (a 10 hour drive) to get ready for that.

We exchanged a few more pleasantries and he left.  It was another half hour of chatting with my son before he decided that he was ready to tell his grandma goodbye and we left the cemetery.

Funny how the reactions of death by others give you reason to ponder what you would do.  When my own mother died, I think in retrospect I was brain paralyzed.  I don't think I functioned properly for several months - I just went through the motions of life.  I was with her, holding her hand, when she took her last breath.  How oddly different this ex husband who waited til 3 days after his mom died to make the trip here, stayed 36 hours and took off because he has a vacation to attend to.

And then I smacked myself silly!  I am leaving next week to go overseas for 5 weeks with my youngest sister.  We have been planning this trip for the past 6 months.  What if my husband were to die the morning we leave.  Would I cancel that trip?  Wow!  Now there's a wake-up call!  What would I do?  And of course I can't answer that because I don't think we ever know what we will do in a crisis.  But did my ex-husband just give me permission to stick with my travel plans?   I should clarify that the ex is a full-time mortician.  Has he seen so much death in his life that he is numb to it - even the death of his own mother?  Perhaps.

Or has he learned how to process death, prepare for death, deal with it and get on with life.  Is it just another moment in his life?  It really gave me reason to stop and ponder - what is the proper protocol when someone dies.....and does it matter what others think about how you react to death?

Now, I truly doubt hubby is going to die in the next week.  But that leads to the next discussion.  A couple of days ago he started vomiting and having diarrhea.  I did some googling and came up with a new one....diabetic gastroparesis.  That's when food doesn't digest, stays in the stomach too long, and comes back up.  He pretty much has all the symptoms.  I suggested he call his doctor.  He said he wouldn't.  I asked when his next appointment was.  He said Apr 27.  If he's not better today I will strongly urge him to call his doctor.

Last night, he asked if we had any chicken broth.  OK - not something I stock but I got him a can of chicken noodle soup.  I suggested that he might want to just have some dry toast and let his stomach rest.  He replied that he was having a sugar low and had run out of glucose tablets.  How can he run out of glucose tabs?  Is he just not thinking?  Sometimes you just have to wonder!

I wanted to post this as I won't be posting again until late April.  This trip is a much needed getaway.  He will be fine.  We will Skype every day and keep in touch.  I'm looking forward to this adventure so much!  Hope you all have a great month!

DW

PS - there were a couple of comments that I deleted because they were full of weird characters.  If it was your comment, I apologize.  But I honestly couldn't quite make out the content because of all the weird letters/symbols.  I think that happens if you use a fancy font that the internet doesn't recognize.

and he's back

after being gone 6 weeks.  I am truly struggling this time to acclimate myself to life with him.  It is not easy.  OK - it has been extremely hard.

I wonder if it's because we are both getting older.  I wonder if it's because the marriage just isn't working.  I wonder.....

It's the tiniest things that drive me up the wall.  He said, "did you get rid of my laundry basket?"  I said, "no, it's in your closet."  He said, "no, it's not here."

So I put down what I'm working on, get up, walk to his bedroom, look in the closet and point to the laundry basket.  He said, "that's no it."  So I pick it up, take it out of the closet, set it on the bed and he says, "oh, it is!"

What the heck????

I pulled into the garage tonight and parked where I always do.  When I went to open the door, I saw that a drawer on the tool chest had been left wide open.  It sits right where I open the car door.  I had to back up, get out, close the drawer, then pull up again.

He couldn't close a drawer???

He has an old DVD player (huge as it was one of the first ones out) and he wanted me to store it for him.  I asked why?  He said, "We've only had it 3 or 4 years, I just don't want to get rid of it."  I said, "In May, it will be 5 years since we moved into this house and you had it at least 5 years in the last house.  That makes it 10 years old!!!"

He has lost all concept of time!

None of this is anything major, but when it is 3, 4, 5, 6 times every hour - it just builds up.  I could just go on and on with examples like this.  I knew it would happen.  I tried to prepare myself for it.  But for whatever reason it is just not working this time.

I am doing a very good job of keeping my mouth shut.  Biting my tongue.  Trying to accept that this is just how life is with someone who probably isn't getting enough oxygen to their brain, who's kidneys aren't able to get rid of the waste, who refused to do anything about their health.  I am trying hard.  Just not sure it's going to work.  Makes me appreciate the break I just had so much more!

DW

Storing medical supplies

Hubby has been gone since 12/12.  I caught a cold and am recovering so not getting everything done I had hoped to get done while he is gone.  He'll be back 1/21.  It's been a great break (other than being sick for 2 weeks).

These reprieves are a complete blessing to me.  There are moments when I simply sit here in the silence of the house.  I know that I have been pushing too hard and that's probably why I got sick.  On the other hand...I am fully rested and ready to turn back into a caregiver when he gets home.

We FaceTime.  That is interesting.  Because I don't see him all day long it gives me a different view of him.  Puffy face.  Retaining fluids?  Swollen eyelids.  Things I will look at differently now that I've seen them with space and time in between.  

Hubby is holding his own with his diabetes.  He will be seeing a new endocrinologist in April.  Still no nephropathy referral which he should have had months ago.  Maybe I can get him to follow up on that.  Or maybe his primary care deleted the request after he said he wouldn't do dialysis.  At any rate, life is pretty good at the moment.

One of the more interesting things about diabetes is finding storage space to keep the things you need to have on hand.  We have a small place - 1120SF.  I have just completed doing the final closet with the wire racks from Home Depot.  I like them as you can adjust them to fit whatever you need.  I no longer wear dresses so I just need a few feet to hang shirts and pants.  The rest of the closet can be in shelves.  I find the fabric cubes are perfect for storing all kinds of medical supplies.  And I found some "half" wide bins at Home depot which have proven to be great for medicines and drugs.  About a foot deep, 6" wide and a foot tall.  Odd sized things fit nicely.  So much more storage than just stacking stuff on a shelf and I can pull out the bin to find what I need.    I have several of the full sized bins as well which are great for larger items such as back braces, leg braces, tens packs, etc.  I now have one full closet dedicated to medical stuff.  I never thought that would happen - but these racks and bins allow me to store it all in one handy place.

This week, I'm working on adding these "closet" racks to the garage.  Once I'm done with that I think everything will finally have a "home".  It's only been 4 1/2 years since we moved in here.  But at least it's getting done!

Hope everyone has a healthy 2017.

DW