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.


Friday, May 05, 2017

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!


Friday, April 21, 2017

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.


Thursday, February 23, 2017

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!


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.

Saturday, January 28, 2017

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!


Saturday, January 07, 2017

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.