Wednesday, February 19, 2014

Another visit - went well

Hubby was here for about 10 days.  Everything went well.  He visited his docs, got his prescriptions renewed, had his labs done.  And he still has not "allowed" me to know the results.  I just find that pretty suspicious!!!  But I have decided this is part of letting go.  There is no reason for me to know what his labs are.  As long as he is not living here in the same house with me.  We were very "polite" to each other during his visit.  I was gone for 4 days to an art retreat so we really didn't have much time together.

I often wonder what will happen when his dad dies.  Does he think he can just move back in with me after this long of a separation?  In my mind, the only reason we are not divorced is because he needs my health insurance.  And while he will qualify for Medicare at the end of this year, I have been researching and it does not appear that his Humulin RU500 is on any Medicare formulary, so he will need to stay with my insurance. 

There is some conflict in my mind knowing that I cover him for his health insurance and he will not let me know what his labs are.  That will change if he wants to return here. 

I suppose lots of things will change.  But I cannot worry about it until then.  :o)  In the meantime, I'm getting ready to take an overseas vacation with my youngest sister, I've started working 1-2 days per week in a local craft store, I'm having fun designing pieces of art and in another month or so, I can start gardening for this year.  Well, I suppose we should wait until the middle of May the way the weather has been going in most parts of this country.  :o)

My health remains good.  My 2 sisters both quit their jobs last week, so that gives us more time to share together.  I'm happy.  Life is good.  :o)

DW

Wednesday, January 22, 2014

in answer to my question

Deb wrote:

t's me again. Ironically I am a health care professional in dialysis and very familiar with ESRD. Because of this I also know too well the outcome of many noncompliant diabetics.

Diagnosis of ESRD is only conclusive through examination of a person's blood work, of course. Some physical symptoms include fatigue, muscle aches and cramping, dry and itchy skin, and lessening of urine output. Many ESRD patients still make urine. The blood work tells most conclusively whether the kidneys are efficient in removing toxins from the body. Most diabetics, especially uncontrolled ones, should also be under the care of a nephrologist in order to monitor the level of kidney function. Once it goes below a certain level, hemodialysis is indicated.

The majority of hemodialysis patients are such due to uncontrolled diabetes. You would not be surprised to learn that even that does not ''wake up'' most of them to become compliant.

''Uremia'' also manifests in mood disturbances, mental confusion, depression, and even hallucinations if severe enough.

my reply:

Hubby has been diagnosed by his physicians as Stage 4 ESRD.  He is under the care of a nephrologist.  He has said when the time comes, he will refuse dialysis.  He's had 8 treatments (when he had his spinal fusion surgery and his kidneys completely shut down) and he says he won't go through that again.  He's the 1 in a million who actually felt the blood going through his veins and had severe exhaustion after each process.   

I have researched uremia and know what he will go through when he is there.  It's between stage 4 and then that I'm wondering about.  

He does seem to have a lot of memory problems.  I'm not sure it's mental confusion, or just loss of memory.  He's been in depression for at least 3 years.  And I think I need a better description of mood disturbances.  I could joke that his mood is always disturbed.  :o)  As for mood swings - yep - he can be a sweetie one moment and a horror 10 minutes later.  

He is coming home for about 10 days next week to make another round of doctor's visits because they are refusing to renew his prescriptions without a visit.  His last labs were 9/13 and were:
A1c 9.1
Triglycerides 1441
gfr 36.1

It will be interesting to see what they are this time.  As it turns out, I will be gone to an art retreat most of the time that he is here.  

Thanks, Deb, for replying.  I was sort of hoping that a spouse who has lived through the end times could share their experiences with us.  And while I'm sure each story is different, it seems to be something that no one writes about.

DW

Tuesday, December 31, 2013

I know....I know....

it's new year's eve and here I am writing another post on this blog.  Yes, I live a boring life!  LOL!!!

First - I need your help.  Does anyone out there have experience  with ESRD?  What are the signs of the final end stages?  I have read about it, I'm just looking for personal experience - not textbook information.

Hubby is still gone - still taking care of his dad. He has been gone 1 year, 3 months and 2 weeks.   This week he got sick.  He has not been able to keep anything down in the last 3 days.  Everything he eats and drinks comes back up.  No, he will not go to a doctor.  I know that it could just be the flu, but he has had so many episodes like this that I wonder if his digestive system is shutting down.  Neuropathy of the stomach?  intestines?

He said this evening that he is feeling a little better.  Well, I think that he hasn't had anything going in for 3 days so he should be at the point where there is nothing left inside to come back up.  He said that his ribs hurt and I reminded him that a couple of years ago, he broke his ribs coughing.  

Second, I'm sharing a comment from a reader:

I've followed your blog for awhile now and I wanted to let you know that you have helped me cope in my own struggle to try to co-exist with a non-compliant diabetic. After 26 years of watching the downward spiral of my loved one I can truly say that I have been able finally to detach and try to recover my own life lest I lose it due to stress and worry. She continues to eat whatever and however she wants, refuses to take her meds properly or at all, won't go to the doctor, won't exercise, etc. I know the worst case course of this disease and she is on it and knows it and refuses to change. I am done and your example has given me the strength and courage to step away and save my own life. Thank you for your sharing and courage. God bless

I have to say that this past week has been an interesting for me.  Probably my usual end-of-year review.  I'm an artist.  And I have always admired Laurel Burch.  However, I had absolutely no idea that she had passed away.  At the end of 2007!!!  And when I did the math....that is about the time that hubby started getting ill, having complications from his diabetes....about the time that I sort of took a hiatus from my art and started caring for him almost full time.  It was quite a shock to realize that the last 6 years of my life have literally been on hold.  I wonder if I should have said I was done before I ever started???

I continue to get back some of the person that I used to be.  I now know that while I feel so sorry for him, he is not here, he is 1000 miles away, and it is not my job to worry about him, or help him out.  I can (and am) a good listener.  He can call me anytime and I will listen and then try to remind him of things he has forgotten.  We do have a history together.  We still talk 2-3 times a day.

My youngest sister and I are planning a vacation together.  We are going overseas and it will be our 3rd trip to this destination.  In the past, I have planned everything about every trip and this time, I turned it all over to her.  I told her that I am just not who I was.  Not yet.  And she said she understands.  Part of it is due to mom's death.  I am coming out of that grief.  But I am also coming out of the grief that this marriage is over.  Yet at the same time I know I am so much better than I was a year ago.  I'm in a much, much better place.  I have found my art again.  I am being creative again.  I am discovering things such as the death of someone that I completely admired.  I am taking care of myself.  my body AND my spirit.

Which brings me to tomorrow.  Someone sent me a great quote.  Tomorrow is the first page of a blank book....write an amazing story!  I feel so refreshed and energized.  I want to write an incredible story in 2014.  I want to have an incredible year.  I pray that my grieving is over.  I know that we all have to go through it.  I know the steps well.  I am looking at midnight as a door.  And while I cannot shut the door to the past completely (not sure I would really want to do that),   I am opening the door to 2014 wide.  I EXPECT it to be a great year!!!  I am praying that God will bless me and make me a blessing to others.  I pray for anyone who is living with a non-compliant diabetic.  That God will bless you and lift you up and give you the strength where I failed.  And my failures have been huge.  

I pray that I can continue to share the knowledge I have of living with a diabetic....even having a long distance non-relationship with one, and that my life might help you a little.  I thought when he told me that he was staying to take care of his dad, that my life with a diabetic had stopped.  But not really!  The stress is less.  My life is much better.  The diabetic spouse is in the background now.  Backgrounds by nature of the term are always there - they never completely totally go away!

May each of you have a wonderful 2014!

DW

Wednesday, December 11, 2013

another month

I truly cannot believe how fast time goes any more.  I keep busy with my family here.  Hubby calls 2 - 3 times every day.  His dad seems to be doing well.  I am enjoying the peace and quiet.  Gaining strength every day.  Have finally started a little bit of exercise which I know that I need.

With all the changes in health care plans, I decided to go from high option to standard option.  It means my deductibles and co-pays will be higher, but the monthly premiums will be lower.  I simply do not have the income to pay for the "best" insurance any more.  And I carry hubby on my insurance so it will be interesting to see what the changes will do to him.  I hope that his insulin will still be covered.  Only time will tell.

In all honesty, I do not think about his diabetes very much at all.  It's not the daily/hourly issue that it is when you are living with a diabetic.  I don't worry about the little things or the big things any more.  I just do my best to make it through one day at a time.  And for the moment, I'm OK.  :o)

DW

Tuesday, November 12, 2013

Traveling

I was invited to travel to teach an art class not too far from hubby, so I came to see him.  His dad went into the hospital 2 nights ago for emergency surgery.  The pain meds caused delusions.  Last night, he saw a dog sitting on his lap.  Sort of funny.

Asked hubby how he was doing health wise.  He said he was fine.  But I couldn't help notice the odd shaped depends in his bathroom.  I'm sure they are made for men to catch urine at night.

Also saw that he has not dusted since I cleaned when I was here in January.  Dust so thick you can write in it.  Bathroom mirror covered with toothpaste spits.  Bathtub covered in dust.

Is he doing this just to see how long I will let it go before I clean?  Has he turned into his mom and simply not ever going to clean again?  I think it is so sad.  However, it is not my life and I am not his maid.  I'm not touching a thing.

He is being terribly sweet.  I am keeping my mouth shut.  It really is sad.  I no longer know this man. But then, we have been separated for 14 months, so why would I know him?

He looks puffy to me.  His clothes are skin tight.  I'm not planning to stay long.  It's so difficult keeping my mouth shut.  It breaks my heart to see him like this.  But I cannot fix him.  I cannot change him.  And I'm not going to be his maid.

Tuesday, October 22, 2013

Untimely death

A good friend of mine, age 49, passed away unexpectedly 2 weeks ago.  Her husband died of a heart attack 2 years ago. Her son asked me to help with her estate.  She had owned her own business.  I'm not sure I can describe the house I walked into.  She did not have a will.  She had not sorted, organized, catalogued, labeled....anything!  It took 5 people working 10-12 hours per day for 5 days to even make a dent in her home.

It got me to thinking.  I downsized last year from 3700 SF to 1100 SF, but I sure need to downsize again!  Why is it we like so much stuff?  Why is it hard to part with what we have?

This week, I'm taking a few days to clean and sort, organize and perhaps get rid of stuff.  I know we all have things we never use.  Time to let go of them.

On the other hand, the moment I let go of something....I will want it or need it.  :o)

Then just as a humorous side....is this like holding onto a diabetic spouse?

Sorry, I couldn't resist!  LOLOL!!!

DW - finding humor in her everyday life

Thursday, September 26, 2013

New labs

A1c is 9.1
Triglycerides are 1441
Kidney function is 36.1

Most of the other labs are all bad.

Protien in urine is off the charts at 525

He says he is not having any chest pains.

They started him on a new med this week for his sciatica.  It's a drug designed to control seizures, but they think it will help pain.  I have a son who has had seizures all his life.  All of those meds dull the senses,  increase reaction times, cause memory loss.  This one also increases depression and suicidal thoughts.  This is not what he needs!

But you can also tell just by watching him walk he has to be in severe pain.  His back is even more curved than before his surgery.

I have been wondering if the thing keeping him alive is caring for his dad.  If he were to come back here, would he live long.  I think it's good that he moved away to care for his dad and I think it's good he's going back.  We have come to an understanding and the past few days have been ok.  I do not envy him any of his medical conditions, but these new labs just are not painting a good picture.