Thursday, November 16, 2017

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