Friday, September 08, 2017

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.


Monday, August 28, 2017

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!


Saturday, August 19, 2017

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.


Tuesday, July 25, 2017

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.


Friday, July 21, 2017

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!!!


Thursday, June 29, 2017

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.


Monday, June 26, 2017

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.