A very good comment

a reader posted this:

I know exactly how you feel. And this blog illustrates to me just how long a non-compliant diabetic's chronic decline can affect their loved one's lives. It seems endless, and with no hope for getting better. Only a promise of years to come with losses and horrible physical and mental problems to contend with.  Having your own life aside from that horror is key to maintaining your sanity and health through the duration of this event in your life. The option is to leave.  So if you decide to be there for your loved one, you must take care of yourself first. Even if it sounds selfish. Put your oxygen mask on first - THEN help your neighbor. - get it ?!That means find something to do in your life that you love. Do it every day if you need to. Protect your self. A friend put it this way: Don't let your life get stuck iin the axle of their illness. We are all separate to some degree, even when healthy and happy. Realize that. Don't feel guilty about it.

I liked the analysis of putting your oxygen mask on first....then helping those around you.  I think that's a very good thought.

But sometimes in a crisis, I forget to do that!  Something I am going to work on.

The good thing for me is that I have found a variety of things that I love to do.....and I do them as often as possible.

And yes, a non-compliant diabetic's chronic decline seems endless.  Absolutely no hope of getting better.  Just more and more things going wrong with the body, more medications, more side effects.  Maybe the hardest part is to watch the other person decline right in front of your eyes.

Or to notice the tiny little differences from one day to the next:

"why is the skin under your eyes so white today" (a symptom of kidney failure)

"why are you so quiet today?" (depression, pain, drug effects?)

it seems endless at times.  So I go garden.  I have strawberries blooming in October - a great reminder that there is hope, no matter what the season is.  :o)

More surgery or not?

I don't post unless there's something new or different.  There's still the roller coaster ride of highs and lows...but he is trying hard to contain them.  I appreciate that.  He has had significant back pain, so finally had X-rays done.  As predicted, his upper back now needs to be fused and he's been referred to a neurosurgeon.

If you remember back in 2011 when he had his spinal fusion surgery - it was a nightmare.  They wrote down the wrong insulin and cut his dose by 90%.  So he crashed on the operating table.  Afterwards, he had blockage in his intestines and had a stomach pump in for 2 weeks.  He also got c-dif - a horrible hospital infection....just so many things that went wrong, and he said he would never go back to a hospital.

But sometimes, pain can change your mind.  I have decided that we can at least talk to the surgeon.....but I wonder about more surgery.  Could he survive?  Would it solve the pain issue?  If he doesn't have the surgery, how long can he survive the pain....it's pretty severe.

A1c is still between 8 and 10.  No improvement in that.  How long can one survive with such high A1c?  He's been at this level consistently since 2008.

On another note, a reader posted this in the comments on an earlier post:
You asked How does your spouse deal with grief and sugar highs and lows. Mine has rage as his first outlet. But like you I have made some rules. He is aware that the option is that I can leave. I don't say it often, but he knows it.  My question to you is - Keeping your gardening, focusing on something that gives your life good moments - does that help you to alsoIt  be able to seee the good moments between you and your spouse? As those good moments become less and less, and he turns into someone almost completely different than he was? It's kind of like how an alcoholic dies; they get mean. They aren't at all who they used to be. The personality changes SO Much! So I have friends that I do my one activity I like with. Focusing on that activity while we're doing it, as if life were normal, is what keeps me going. They don't know my situation though. They are just activity buddies. And not talking about Diabetes is kind of a treat. It's as if that part of my life doesn't HAVE diabetes in it. But I'm having difficulty maintaining at home because it's so depressing there! It's showing up in my lack of attention to the house upkeep. It's as if the house is dying along with my husband. Nothing gets fixed unless it is imperative! So little by little through the years the disrepair builds. I guess the answer is I should just tackle it myself. It might me feel alot better and gradually the house will become mine. And I will gradually learn to be the boss of those kinds of decisions. Taking the reins where he used to be the boss while he is still physically here - is one of the hardest things for me. Mechanical things. Construction. Financial decisions. The fact that I have to not just make them, but override him (because his idea these days is to let it go. Or say he'll get to it but he never does) and THEN do these unfamiliar things. That is maybe a lesson I wil take from this event in our lives, that will make me stronger and more capable when I am actually alone.When this is over. If it ever will be over. I sometimes think that it will kill me first.

My response.  Gardening has been a huge help.  It occupies my time from April - October.   It creates good moments between hubby and me because he enjoys how wonderful the yard is.  He can sit on the back deck and watch me work, talk to me while I'm working.  It gets him outside a little more often.

There are many aspects of my life that are void of diabetes and I agree, that is mandatory.  I am an artist and have groups that I join, events I attend. Diabetes is never mentioned.

I agree, I have learned how to do so much on my own.  Mostly due to the 3 year separation.  Youtube has been a godsend!  I don't think there is anything I can't tackle.  And because of the gardens, the house has to look great, inside and out.  Now that he is back, I do run most decisions by him....but I already know the answer.  :o)

Overriding him is an issue.  I wait until I'm pretty sure the sugar is normal to even have a discussion.  He is getting more and more forgetful....so I am repeating myself more and more - holding my tongue, trying not to let him know how frustrating it can be.  Yesterday alone he asked me 4 times about my plans for today.

Some days, I'm pretty sure I will die first.  But for the most part, diabetes is HIS problem, not mine, and in my life I try hard to keep it on the back burner.  Which keeps me sane.  :)

Starting over

Hubby has moved back here.  Been a week and things are going ok.  But I do realize we are in a "honeymoon" phase.  I will say that he is working overtime to make this work and I am not complaining.  He has not had labs done yet.  He has not seen a doctor yet.  He is doing great at keeping his anger in check.

He inherited his dad's chihuahua.  She broke her leg at a young age and had to have it amputated.  So now I am "mom" to 2 chihuahuas after 3 years of no pets.  That may be the biggest adjustment.  :)

The house is completely torn up and in total disarray as I would expect any time someone moves in or out.  So I am doing my best to stay patient with the mess.  Keeping busy working in my garden.  This is my 3rd summer and things are growing and blooming like crazy.  It keeps me sane!

Only time will tell how this will work out.  He kept his dad's place so I know he can always leave and go back and I am fine with that at the moment.  I want to keep the "legal separation" that we have in place for the time being.  Simply not willing to make changes of any kind and there is no reason to make snap decisions.  Hoping he will get labs done this week.

There is a saying "in the end it will be ok because it will be the end" and while I am not really ready to be the wife of a diabetic again, I have had a lovely 3 year break and perhaps I have built up the strength and had the rest that I need to see this through to the end.  Only time will tell.

And yes, he is still very non-compliant.  Last night alone he ate ice cream, a cinnamon roll, rollos....but I'm sure he's been eating just like that for the last 3 years.  I am trying so hard to keep my mouth shut!  No, I did not buy them, he did!  I have lost 35 pounds while he was gone and I am determined to keep it off!

Here's hoping week 2 is as good as week 1 was.

DW

Life goes on

A week after my last post, hubby's dad passed away.  We left the next day to go back.  Hubby had just finished his last doctor's appointment that day.

So things just went downhill from there.  In retrospect....was it grief?  was it a diabetic low?  was it just stress?  I will never know, but the fights were horrendous and just seemed to grow.  Hubby started making terrible decisions faster than I could absorb them.  I tried to be supportive.  His brother was there and pushing so hard as he needed to get things done before he went home.

Eventually, I broke down.  Walked out - climbed up into the hills, found a rock and had a good cry.  Hubby called asking me to come back.  Well, where was I going?  LOL!  After I finished my cry, I went back and things were a little better.  Both guys decided to back off on making changes.  Things slowed down.  But there were more huge fights.  

I think the worst one was a sugar related one.  It's been so long since I've been around him I really had to give it time to sink in.  And oh, my goodness....the memories just came flooding back.  

So I am back home now.  He and his brother are going to keep their parent's place.  I am not going back.  Hubby can decide to stay or come back here - I just do not care.  I have made my "rules" pretty clear - if he comes back here, he is going to keep the place clean, smell free, no fights, and deal with his problems.    But I need a few weeks alone here.  It has been intense.  But death always is.  

I am most mad at myself as I had lost 35 pounds and I have now put 20 back on.  So back on the diet tomorrow and I am not going to do this again. I can't!  I'm just too old.  ha ha!  I know it was all stress eating and I do have to get that under control.

So, how does your diabetic spouse deal with grief and sugar highs and lows.  A new, rather interesting situation for me.

If he does move back, I will be back to posting more often.  In the meantime, I have loads of gardening to get to as I have been gone more than I've been home this year.  

Since my last post in February, I have come home, gone on a month long vacation with my sisters, gone back and spent 3 weeks with hubby and now we are both home for 3 weeks as he needs a break from taking care of his dad.  Until yesterday, things had gone great.  The plans are to spend a couple more weeks here, then go back to his dad's where I will spend a couple of weeks, then I'll head home for the summer.

What happened yesterday.  For the past few days, there have been horrible smells coming from his room whenever he opens the door.  I assumed it was our aging dog.  So I started on a mission with the black light to find where she had peed on the carpet.  I set out a can of freshener stuff, sprayed other products on the carpet....things I have done forever in the past.  In the back of my mind I kept thinking that this was not the smell of dog urine, but something I had experienced before and I was truly puzzled.

Last night, the smell was so bad I wanted to vomit.  So I asked hubby if he knew what it could be.  I told him it was making me sick and that today I would get a rug doctor and clean the carpets.  Me- still thinking it was our dog.

A couple of hours later, he comes into my bedroom and says, "the smells are all me.  I will pack up and drive back to dad's tomorrow and figure out how to get your car back to you."  I said, "what do you mean the smells are all you?"  (I was truly shocked by his statement as that thought had never crossed my mind!)  He said, I ate cheese and it is not agreeing with me.  You said that I am making you sick, so I will leave.

I almost wanted to burst out laughing.....or scream my head off.  Nowhere had I EVER said (or even thought) that "he" was making me sick.  I thought it was the dog!  And then is martyrdom....oh my goodness....that he is going to pack up, drive back to his dad's, leave me here without a vehicle....

I said, "stop being such a martyr!"  To which he stomped off to his room!  OK, isn't martyr the right term?  I found this definition online:  someone who is making a big deal out of their own work or suffering.

Again, I thought it was the dog!

And then my brain kicks in.  Remember - he's been gone for almost 3 years and I haven't had to deal with anything diabetic.....ketoacidosis.  That's the smell.  He had it horrible after his back surgery when his kidneys failed and he was on dialysis, and it's the very same smell.  Kidney failure.  And with all the neuropathy, he probably doesn't smell it at all.  If you haven't experienced it - it's a sweet acidic type smell and when it gets bad, it's nauseating.  

He's still in bed and I'm sure when he does wake up, he will be all apologetic and tell me how sorry he is and then he will do things to eliminate the odor.  It's always the pattern.  If it's anything different, I will post again.  But my memory recall is flooding back and I realize what an amazing gift I've had to be free of these "temper tantrums" - ok, highs and lows - for the last 3 years.  That being said, I also am fully aware of how exhausted he is from taking care of his father who is also a diabetic.

I may be a horrible person, but I'm going to say it again - this is NOT my disease.  Yet a diabetic produces all these side effects that a spouse must deal with.  ESRD is not pretty.  It is not pleasant.  I don't care how much you love a person, ketoacidosis is rank and can make you puke!  Well, at least make you dry heave which is also not pleasant!  The fact that he can't smell it is shocking.

Going to relax a bit before the "day" begins!

keeping your privacy

Had a comment from someone who couldn't figure out how to keep their identity private.  Well, I simply set up a fake email account with yahoo.  Then I used that "valid" email name to set up an account with google and thus this blog.  If I have an address....it's pretty much fake.  Keeps my location private that way as well.

I only have about 3 days left of this visit with hubby.  We had an interesting day today - a true Friday the 13th, so I'm pretty much writing it off.  But I dropped him off to get his haircut while I ran an errand.  Got back quickly and pulled into the handicapped parking spot.  He came out about 10 minutes later, looked at me, looked the other way, then pulled out his cell phone and I knew he was calling to find out where I was.  I rolled down the window and yelled to him before he made the call.  He said he didn't see me.  Sort of makes you wonder what's going on.  But again...it IS Friday the 13th!

Have been doing more cleaning on this trip, but I have also been in repair and restore mode.  Fixing things up, painting, patching.  Creating a small space of my own in a spare bedroom.  Found a group on FB to join so I can meet other women in the area.  I'm going overseas the month of March, then I'll be back here in April.  Going to be quite the busy year, that's for sure!  At least I can still travel and I'm so grateful for that!  He will be at my place in May and get his labs done then so I'll try to post an update with those.

DW

Things continue to improve

Hubby has been gone 2 years, 5 months.  After his November visit, I let him fly me to visit him in December.  3 weeks.  I was so anxious.  But it went really well and I'm going back the end of this month for another 3 weeks.  He now calls numerous times a day telling me how much he misses me, that he loves me....

WHAT HAPPENED?  What changed?  and w-h-a-t-t-h-e-h-e-c-k?????  LOL!!!

Thinking back.  In Jan, 2013, I was ready to divorce him.  It got worse in Sept that year.  But in Nov, that visit went ok.  Just ok.  Not great, but not horrible.  Jan 2014, that was an ok visit.  But in Nov and Dec, we actually had a great time together.

Is is just the length of the separation?  Has he forgotten what our life had become?  Has he erased everything?  Or does it boil down to finances?  He needs my health insurance and my benefits.  Because of my employment, he does not have the so-called "Medicare Gap" and found out that I am saving him about $7500 in Oct, Nov, and Dec.

So yeah, he "should" love me!  :o)

I have decided to take a wait and see attitude about all of this.  I'm not going to rock the boat.  Just going to enjoy this.  We are still legally separated and I plan to keep it that way.  But if he wants to fly me to where he is, take me shopping and out to dinner - hey!  I'm up for that.

He will be here in May and will get his labs done then.  Will be interesting to see if his A1c is still at 10.2.

The really great thing for me is that I am literally and completely diabetic living free.....and that is a huge difference.  In fact, I could not have explained this to myself or anyone else, I think I had to experience it.  Living with a diabetic partner takes a huge toll out of one's self, both physically, emotionally AND financially.  I think when I was living it - I was in denial.  But I am in better physical shape today than I have been at any point in the last 15 years.  That constant, daily, roller-coaster ride simply depletes a person.  Zaps the life-blood out of you!  The never knowing when the other person is going to be happy, sane, mad, screaming, raging......life without that is certainly healthier!  And again, remember, I was with a non-compliant diabetic.  I pray it's different if the diabetes is under control.  Something I never experienced as evidenced by that high A1c.

Taking it slow and steady with the hopes of keeping healthy and happy.  Hope you are, too!

November update

He was here for a week this month.  First time since January.  Things actually went just fine between the 2 of us so perhaps caring for his father and being gone for over 2 years has been good.  He has to come back to get labs and see his doc in order to continue to get his prescriptions.

A1C was at 10.2.  Not good at all.  But looking back at the grid I used to keep, he has been at 8 and 9 most of the time since Feb 2010, which is when he had his heart attack.

His cataracts are growing, but they prescribed new contacts.  He had cornea transplants 30 years ago and they don't want to do cataract surgery until they have to.

He went on Medicare with his disability.  Thought he was part of the "donut" where he would have to pay very high Rx for the last 3 months of the year.  However, he's on my HMO which protects him from that donut and he won't be paying $2500 per month for his insulin (Humulin RU 500 concentrated) - not on anyone's formulary.  So he needs to stay "married" to me.  I suggested that he needs to "keep me happy".  LOL!

I spent the summer gardening and decided to lose some weight.  Down 32 pounds and still working on it.  Walking at least 18 miles a week.  Feels great!  I am learning how to not eat for comfort.  I have given up all soda and sweets, red meat and most flour.  Throwing myself into raising flowers was so therapeutic this summer - I loved it!  Already making plans and lists for my gardens next summer.  And some major projects this year.  I put in 1500 pounds of flagstone making a patio and path.  And I hung new "used" kitchen cabinets in the garage along with putting up slat wall to give me more storage.  I also put in all new closet systems in 4 closets in the house and added 2 in the garage.  Wow!  I think I did some work this year!

I walk with one sister every day and see the other sister 3-4 times a week.  I've been making jewelry and just recently returned to leather crafting.  It's been a really great year and I'm looking forward to the next few months.  I'm getting close to my weight loss goal, getting healthier both physically and mentally.  Enjoying my reprieve from caregiving.  Been a great year!

Summer's over!

And I'm just getting back to this blog.  I received this comment:

Your blog has helped more than anything else I have read. Just knowing that this can go on for years and years gives me the courage to know that I MUST protect my own life. I still can't help wondering about the future and how I will make it, but at least I won't let it take me down with him. Thank you! I am very curious if after their spouse's passing, anyone out there who has gone through the long years of decline has been successful in forgetting those horrible things and remembering just the wonderful spouse they used to have before Diabetes changed them. Or do the long years of horrible weird dying things just stay in your memory of that person as the main part?


I think it must be like childbirth.  36 years later...I barely remember what happened.  I don't remember the pain even though I know I had 23 hours of it!  Hubby has been with his dad for almost 2 years now and I know I'm glazing over the diabetes issues (until I sit and read what I've written about it!)  I no longer have to deal with it so I just don't think about it.

That being said.  Hubby still calls every day.  He is coming for a couple of weeks in October.  He hasn't been here since January and needs to visit all his doctors to get his meds refilled.  His dad, another non-compliant diabetic, had a sugar crash not too long ago.  Hubby called me in a panic saying he thought his dad was going to die.  The hospice nurse came and informed him it was a sugar crash.  

So think about it....a diabetic really would not know how to recognize the symptoms of a sugar crash because they do not see what happens to them when they are having one.  Interesting, huh?

I waited a couple of days to make sure his dad was ok and then asked hubby if he remembered the sheer panic he had been in.  He did.  So then I asked him if he realized that is exactly what I feel every time he went low.  He said no.  So I think this is a good experience for him as he is getting to feel everything I have been through for the 5 years before he left.  He might understand a little better what others have to deal with when he crashes.  I think he's also getting a good feel for what it's like to care for someone with diabetes.

He still says that he's moving back here when his father passes away.  I still say, "we'll see."  His dad is just now 80 and while he does have hospice care, he could live for a couple more years.  Or he could go tonight.  

In the meantime, I've had a wonderful summer of gardening, growing luscious flowers, creating paths, making hidden gardens.   Have decided it's good to be outside as much as you can!  Went for my physical and my doc said I need to lose weight so I'm down 22 pounds and it feels wonderful.  Going to work on firming up my muscles next but I've been walking 3 miles 4 times a week and loving it.  Have a sister that walks with me so that makes it more enjoyable.   

Think it's going to be a great September!!!

DW

From Wife of a Diabetic 2

Here's a note from Tom's Wife:

Hi DW, I had a major computer problem and in the recovery process, I lost access to my blog. Google tells me it is not recoverable -- no one can access it at all any more! :( So I am requesting that you post this the next time you are on line (its a good thing that's not very often anymore because your life has changed for the better!) I don't know if I am going to create a new blog now. Tom's health is good, mine is getting better and the blog is not as important to me as it once was. (I am guessing the same for you) Do you find it interesting that there are more options for people today than when you started? I am ever grateful for your blog. it helped me understand that I was not alone. I wish you all the best and will check in with you from time to time in the future if you even look at this. Take care, Tom's Wife


Dear Tom's Wife,

Have you checked your blog today because I can see it and read it just fine.  I think sometimes Google has a "glitch" and in a few days things get back to normal - if google has a "normal".  LOL!!!

My life has changed for the better.  I am having a busy summer gardening.  The flowers are gorgeous and digging in dirt if very therapeutic.   The rain comes and the weeds grow even faster.  I have figured out "tune radio" and carry music in my pocket all day long.      Hubby is still living with his father.  I am no longer sure who is taking care of who in that situation. 

 In September, hubby will have been on disability for 2 years and he will go on Medicare.  He called the other day asking if his Social Security was going to end in September.  He was very concerned.  And confused.  I simply couldn't comprehend why he was asking me this question and then I realized that he must be in a sugar low.  It's pretty hard to recognize them via phone.

He spends most of his days lying in bed watching TV.  He does take his father to his medical appointments and they continue to try to port his dad for dialysis - which his father is refusing.  He is sort of the opposite kind of diabetic, very tiny man, all skin and bones.  I am simply grateful that I am not there having to live with 2 generations of diabetes.

I agree, there are many more options these days.  There are many more resources.  There are numerous support groups.  However, some of the same antiquated thoughts still exist.....that the healthy spouse should take care of the non-compliant spouse to the extent that we "manage" their disease.  The "guilt" that a non-compliant diabetic tries to impose on their spouse.  The "denial" people have about calling this a "disease".....the list is endless.  Some things never change.  

Yet no matter how much "support" one can receive, I still believe writing your personal story, sharing your personal experience, putting your thoughts down into words....that's what heals a healthy spouse.  :o)



DW

Time flies

Hard to believe that nearly 3 months have passed and I haven't blogged.  Life is very good.  I am busy with my gardening.  Busy with my sisters.  Hubby says he wants to come for a visit in August or October...he's still a thousand miles away staying with his dad.  Hard to believe he's been on disability for 2 years and now we start the process of getting him on a Medicare plan that will pay for his humulin r u 500 concentrated.  About $431 per month for the cheapest plan in his state.  I'd like to get him something there so he can get labs done locally.   Lots of research to do next week.

Sort of my life at the moment...if it's not digging in the dirt...it can wait til next week!!!

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

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

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

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

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.

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

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.

I'm in hell and don't know which way out!

Yes, it really is that bad.  I flew to meet him last Saturday and on the drive from the airport to the hotel, he started in arguing with me.  Manipulating me.  He wanted me to sit in the hotel room and babysit the dogs while he, his dad and brother went to a football game.  I had already told him I was not going to do that.  But he managed to get his dad and brother in on the act and I stayed.  I was so pissed off.  Still am.  But it has been like that almost non-stop since Saturday about one thing or another.

He has played the "I forgot" card, the "that's not what I heard" card, the "I'm sorry, I didn't hear that" card....you name it, he's played it.  This morning was a major blow out.  We drove home yesterday. He ate at 6:30 am and 11:30 am, then refused to eat after that.  Of course he crashed!  The apologized this morning.

Absolutely nothing has changed.  I was so pleased with all the changes I've made in the house and he merely felt threatened by them.  He wants everything back the way it is, but he's going back to his dad's, not staying here.

I'm exhausted already and can't wait for him to leave, but he's here for a whole week.  Sad, huh?

DW

Upcoming visits

I used to own and antique business in another state and when I moved here, I moved a gorgeous antique glass showcase.  It's about 6' tall and 3 1/2' square with all glass sides and glass shelves.  Then we moved it to my mother-in-laws so she could store her dolls in it.

Now, my sisters and I have signed up for a space in an antique mall and I need it back here!  So I'm flying out in a week to help hubby load it into the truck and bring it home.  I need to be there to make sure it gets packed well so it doesn't break....and to help him make the drive home.

He'll be here about 10 days.  He said there is more of his stuff that he wants to pack and take back.  In all honesty, there isn't too much of his left here!  But he's been gone a year, and I'm sure if I were in his shoes, I'd want all my stuff with me and not here.

I think it will be interesting to see how we get along while we are together.  His doctor finally decided to stop his prescriptions, so he has an office visit scheduled for when he is here and he will get all of his labs done.  It will be interesting to see if the labs have changed much in the past year.  He is living at a lower altitude, so I would think they might be better.  He hasn't been here since April and then he said he definitely noticed the altitude.  Will be interesting to see if it's worse for him on this trip.

A year ago, neither of our moms had died yet and I promise that none of us had a clue our lives were going to change so drastically.  Life sure is interesting!

DW