How much do you share?

"managing" wrote: 

 Sounds like he's wanting to just check out. If you knew you only had three more months left with him would there be something you would want to have said to him or ask him to share with you that was previously not shared but you would like to? If I were these guys I would choose to die as fast as I could and not prolong the suffering in some half-way attempt at Beating this thing with surgeries or treatments that just keep your body alive but not getting better. Just not dying right away. And/or actually make your quality of life worse. Ugh! No thanks! I would choose the quickest and less struggling kind of way. I believe I will choose that, but I don't suppose any of us REALLY know until it is our own time. I wish you good things.

We have probably had all of those types of discussions that are possible....and more than just a few times.  We also know that we could move to Oregon where assisted death is possible.  And yes, we've discussed that.

There were moments during his spinal fusion surgeries that we did not know if he would survive.  Afterwards we had long talks about it and about the fact that life could end at any moment.  Then, 4 years ago, when his mom walked around the end of the her bed and dropped dead with a heart attack - we had many, many discussions.  I think that brought it home that either of us could go just as fast.  I think it would be the preference for both of us.

In some ways, I think he is afraid of death.  Yet he is saying he will not do dialysis or transplant.  He has had so many surgeries that I don't blame him.  Yet when that "moment" comes - what will any of us do?

Our current discussions are sad.  How much do we tell our family and friends?  Do we keep quiet about lab results, doctor's visits....and then they are shocked when something happens?  Or do we share with them and then they spend their time worrying.  We don't want to create anxiety and there are some where that would happen (neither of us think his daughter could handle knowing what's going on with him).  He doesn't want attention or sympathy and I do admire him for that.  If we don't tell immediate family - there are some who will be terribly upset that we didn't.  It's such a fine line and we still haven't decided how to balance it out.  We have discussed his current status with a few family members and a couple of friends.  But for the most part, we have decided to remain quiet for now.

And then there is the power of prayer.  He does not want people praying that he stay alive.  And I think that ties back into the above comment.  If the body is not going to get well - why do people pray for the person to stay alive?  Why not pray for a peaceful, painless resolution?  I know of a woman who is about 85 and has been in a nursing home for 5 years.  She has had numerous strokes, is on oxygen, can barely move, lays in bed all day long - yet people pray that she will live.  She has shrunk and faded to near nothing.  90% of the time she is unaware of her surroundings.  I pray for mercy for her sake - not that she live.  But people think you are a horrible person if you don't pray for someone like her to live.  Sigh.

The ultrasound on his kidneys came back clear.  That means there is no growth or access blocking them.  An indication that this is just kidney failure - nothing else.  So now, we wait for the referral to nephrology.

There are days when he says he won't go to another specialist.  And I understand that.  But I try to tell him that it doesn't hurt and perhaps it could help.  I suppose it depends on his mood when they call.

It's not been a particularly good week.  He fell in the back yard.  The gigantic black/purple bruise that covered most of his lower back was horrendous and he refused to go to ER or even call his doc.  Then night before last I heard a gigantic crash in the kitchen.  By the time I got there he was face down on the floor.  He said he had dropped something, it his his foot and when he brought his foot up, he lost his balance and went down.  It took him awhile to get up and once again, we sat and talked about what might happen when he can't get up on his own.  At his weight I can't lift him and I'm not sure I could even roll him over.

Then yesterday - he was just mad at the world.  Yelling and screaming at every little thing.  I understood.  He can't grasp things with his hands anymore - whatever it is just drops out.  He has no feelings in his fingers.  He is in pain for the recent falls.  He is just mad at life.   I made myself as scarce as possible in this tiny little house.  It was an extremely stressful day - but we managed to make it through it.

The fall weather is holding out and I have been busy with my gardens.  Hired a helper and we ripped up flower beds, removed mulch, put in metal borders, ground cloth,  and have put down 1 1/2 tons of river rock.  Probably another ton to go next week.  They are looking lovely, well manicured, and it will be easier to clean the leaves out with a blower.  I've also signed up for 3 art classes this fall.  I had to laugh as all 3 classes gave me homework to do!  Needless to say, I'm keeping busy!  And I think that is the best way to handle a diabetic spouse - you just keep living - doing the things you would do if you had a healthy spouse - to the extent possible.

DW

Lab results

While many of his labs are outside the normal range, they are consistent with past labs.  I. E., his A1c is 10.6....which is where it's been for ages.

However,  the Microalbumin, ur, detection limit (should be under 30) is over 2000
The microalbumin/creatinine (should be under 30) is also over 2000.

The means his kidneys are not functioning and protein is high in his urine.

His doctor wants to do an ultrasound of his kidneys (to rule out a growth or blockage) and a 24hr urine test.

He said he is not going to do either test.

Sometimes he says that and then schedules the test anyway.

So I did some research and told him what I found and that I didn't think it would hurt to have the tests done.  We have excellent insurance and it wouldn't cost anything.  We'll see if he decides to do them - might take a week or so - I'll give him that long and ask.

But I do understand.  Not knowing the test results - you can go on just as things are right now.  They will either tell him that he needs more drugs, dialysis, or that there's problems with his heart (which I suspect).  He continues to say that he is not going back into a hospital.

My argument is that his doctor might refuse to treat him if he doesn't agree to the treatments he recommends and further testing would be part of his overall treatment plan.

In the meantime, his pneumonia symptoms went away and he is breathing better.  He had a "boil" type something on his neck and the doc put him on an antibiotic and it has not only helped the "boil" but everything else.  He goes back to the doc on the 29th.

DW

The next phase?

A few days ago he started to cough.  A dry cough.  Said he felt like his chest was filling up with fluid. I told him to see his doc - he can't get in until Thursday.

Today, he is struggling to breathe.  He talks in short sentences and you can tell he can't get air in to speak.

He refuses to go to ER

He refuses to call his doc.

I have done everything I can to make him comfortable.

What if his doc tell him he needs to go on dialysis - he still says he won't do that.
What if they want to admit him to the hospital - he says he won't go.
I think diuretics will help short term, but nothing much long term from what I can find.

I know my "worry factor" has increased in the past 72 hours.  Wondering if we are now full blown stage 5 ESRD.....or if this will pass.

Today, I am feeling old beyond my age.  Can't begin to fathom how he is feeling.

Do you still love him?

I am having a great day playing artist....but when you do that, you loose control of what you are supposed to be doing.  So, to "managing" - I deleted you comment and didn't get it copied.  Sorry!

And it was a great comment about how you used to love your non-compliant diabetic spouse and how you are coming to terms with not loving him any more.  I truly understand that!  And I think on some level, I went through that in the 3 years mine was gone taking care of his dad.  It is so strange when the fellow you were so madly in love with becomes a "roommate" of sorts...that you don't necessarily always want to have living with you.  :)

This week has been interesting.  He has been steadily losing control of the use of his hands - can't hold a thing.  The first solution was to prepare finger food.  Nothing that you have to cut with a knife. Sandwiches are great.  Burritos, tacos, etc.  But this week there have been more drops, spills and accidents than I can shake a finger at.  The mop is now permanently stationed in the kitchen - it has been used so much.

It's the little things like this that are attributable to neuropathy....but no one tells you about them.  When there is no sensation left in the fingers, you can't "feel" an object to grasp hold of it or hang onto it.  I used to mop the floor once a week, then once a day - now multiple times per day.

And that has started me longing for one of these "tiny houses" - with no floor to mop.  No "stuff" to spill or drop.  LOL!  OK - give me my fantasy - I'm entitled to that much!

Here's the sad part....no one tells you, no one prepares you.  I didn't know.  And while the issue has been increasing over the past few months, something has happened this week to where it has been daily.

The other thing I've noticed is an inability to pick up his feet when he walks.  I have plastic runners on the carpet done the hall.  He is constantly catching his foot on it and "tripping".  He doesn't fall, just takes a few extra steps.  And mutters under his breath.  This has happened in the past, but this week - every day, multiple times.

So you have to wonder if something has happened internally to present these increased external incidents.  It's something to ponder.

And I think he notices.  He is ever so much more frustrated with life.  He gets upset and explodes over the tiniest incident.  I can usually ignore them.  Suddenly, he hates living here, hates this place.  So I quietly said, "well, move then."  Ended that outburst.  :)

I used to react, now I don't.  That helps.  Just let him have his rant, know that it may or may not be a sugar hight or low, keep doing whatever it is that I'm doing, don't let him have control over me, keep pushing the monkeys back onto his back.  Difficult to do at times.  But it seems to be helping.

Do I love him?  Isn't that the $64,000 question?  I did.  I do.  I just don't "love" the person he has become.

I have been studying "pump head" a term applied to people who have CABGS surgery (open heart) and are not the same as they were before the surgery.  Quite an interesting concept....but perhaps a lot of truth to it.  The heart "knows" that there was no blood pumped through it.  It "thinks" it should have stopped.  It then gets confused post-surgery.  The brain gets confused.  You do things you never did before.  Some people get angry.  Some just do unexplained things.  My dad tore down a perfectly good house after his bypass surgery....for no acceptable reason!

So then you have to combine the aspects of "pump head" with a non-compliant diabetic.  Very little research written about that.  Very interesting study.

Do I love my pump-head, non-compliant diabetic? Well, that almost sounds funny enough to make you wanna love the poor schmuck!  And even though there have been trying moments this week, it's been a good day today.

DW

The funny things people write to me

I find it humorous when someone writes to me and says that I can't understand this or that because I'm not diabetic.

I disagree.  I cannot understand your personal feelings, but I probably could pass for a ph.d on this topic.   I have never experienced any of the symptoms or side effects of this disease.  But having experienced a substantial amount of pain from a variety of issues in my lifetime - I do know what pain is.

Anyone understands events, illnesses, issues that sap energy out of you.  I'm thinking childbirth would be a really good example!  LOL!!!  How exhausting is it to be in labor for 24 hours, pop out a child, then start to hemorrhage so severe that you have to go into surgery?  Talk about pain that saps every single ounce of energy in your entire system?  I've been there, experienced that!

I really do understand that excess sugar damages veins.  As well as nerve endings, organs, etc.  I completely understand that it's not providing him with the energy he needs.  I know exactly where his lethargy comes from.

The difference is, he does not do what he is supposed to do.  He is a seriously non-compliant diabetic who eats whatever he wants, refuses to do any type of exercise, is in his chair or on his bed most of the day.

I do understand that diabetes is never behind you.  Trust me.  It is right here every single solitary day - right in my face - whether I want it or not - and I do not have this disease.  However, I have to live with the outcome of a diabetic who does not care to take care of himself.

When something goes "wrong" with my body, I will research the internet to see what I should do.  If it says to see a doctor - I go.  If there is a problem, I follow my physician's orders to the letter.  I don't play around with health.

Which is probably what makes it so incredibly difficult to live with someone who refuses to do what the doctor orders, who has basically given up on life and is just coasting until the next major crisis.  Personally, I think he is going blind.  He is having more and more of these optical migraines where he can't see.  He just goes to bed.  One of these days, his vision will not return and I have no idea what will happen then.

And I do understand the depression.  The fact that there is no hope.  The fact that you never really know (especially when you are noncompliant) when you will have a sugar crash, start acting like an idiot, drive off the side of the road.....I live on the other side of this 24/7.  I have to be the nurse, the person who is alert all the time.  I never get a break.  I do not get relief from the constant knowledge that he is constantly depressed.  That being said, I am really tired of being his cheerleader, making sure he eats a solid meal....all the things that go with living with a diabetic.

I am tired of watching the impact of what is happening to him because he doesn't take care of himself.

To another writer - if you've read my blog as you state, then you would know that I do not promote anyone else's products.  Comments are not the place to put your "ad".  And I find it comical that you would try.  Besides, we have extremely good insurance that covers everything you mentioned - so no need for us to look elsewhere.  :)

I did have a wonderful 6 day reprieve when I flew to give a presentation at a conference.  Being in the hotel, walking all over the city, exploring coffee houses and art venues - it was refreshing.  I even read a book!  Sort of makes you want to run away full time!  :)

DW

August already!

I am posting this solely as reference notes.  I forget with day-to-day life that I still need to keep track of changes.

I have been studying post CABG (open heart surgery) cognitive dysfunction (aka pump head).  It is an interesting topic.  My dad had 5 bypasses done when he was 45 years old and I'm pretty sure he had this.  About 10 years after his surgery, he tore down a perfectly good house.  He lived 17 years after his surgery, which, at that time, was considered a pretty good track record.

Hubby is now 6 years post CABG.  I see signs of "stupid" decisions.  His brother wanted his parents house and he decided to keep his grandmother's apartment on the property.  It doesn't make good financial sense to me.  He can't sell it (the property has to be sold as a single unit).  Any money he puts into the place (and it needs a ton of investment) will be money down the drain as he can never sell the place to recover it.  Not good financial choices.

He just spent a month there - the hottest month of a year in a place where it's hot!  Why July?  Why not January?  It doesn't make sense.

He is dropping things and getting angry.  Why get angry?  Why not go to a doctor, physical therapist, occupational therapist - see what can be done?  I suppose it's easier to just get angry.

He told me that he would like to just be a recluse.  I told him I'm not ready to live with one.  We are at odds.

While he was gone, I found 4 bottles of nitroglycerin in his bedroom and bathroom.  I asked him if he was taking that again.  He said no.  There should be 25 pills in each bottle.  One had 2 pills, one had 4....I suppose he doesn't want me to know that he's taking it?  Why not?  I suppose he didn't think I'd literally count the pills. LOL!

Today was a particularly horrible day.  I had loaded up the truck with bits of lumber (I just replaced the crossboards on our privacy fence) and tree branches I've cut and yard trimmings to take to the dump.  Got the tarp and tiedowns on it.  He said he'd go with me.  It started raining on the way.  It let up, so I got out and started putting everything in the roll-off dumpster as we weren't allowed to go into the dump due to the mud.  Then it started to pour.  There I was in the pouring rain, moving stuff from the back to the truck to the dumpster while he sat inside the cab.  He didn't offer to help.  He didn't budge.  And I just wanted to cry.  But I didn't.  I finished the task and came home to a long hot bath.

Next week I'm flying 1300 miles to speak at a conference on a history topic I've been researching the past 10 years.  I am looking forward to being surrounded by like-minded souls, to making new friends, to socializing.  I went to dinner this past Sunday with out-of-state friends I have known for 40 years.  He didn't go.  He said he would have nothing to talk about.  I thought that was sad.  I talked and listened for 3 1/2 hours!

I would love to get a small travel trailer and travel while we still can.  He said today that he wouldn't go with me.  So I won't be doing that.  He probably thinks it would be too much work - but I'm not sure why that's an issue since I did all the work today while he sat inside the truck.  Somehow, he just doesn't see that.

I have been quite busy the last 2 months.  We have 180' of privacy fence and I am painting it inside and out, replacing crossboards and repairing pickets as I go.  I have had to clean out the flower beds along the inside and move boulders to get to the bottom of the pickets.  Still walking 3 miles every other day with my sister.  Getting plenty of exercise.

It makes me sad that he has chosen this path for his life.  That he has given up on living - that he finds no joy any more.  And it is a struggle for me to keep my head above water most days - but I am succeeding.  Building a niche for myself, building a circle of friends.  Keeping busy.  Started watercolor painting classes 4 weeks ago.  I am horrible at it!  But I am meeting some very interesting people in class and the conversations are wonderful!  I'm even looking for more classes to take.

While I am sad at his life and lifestyle, I am blessed with mine.  Staying busy, keeping active, finding new things to be interested in - that may be the key to surviving life with a non-compliant diabetic!

DW

Summer is just flying by!

Busier than ever!  Maybe it's good that there's just not time to worry about diabetes.  :)  Things are fairly stable and that's great!  My flower beds, sisters, art - all keep me busy.  Decided to take some classes this summer.  That might have been a mistake!  :)  

To Tom's wife - how was the surgery?  My youngest sister has developed what is called a "frozen shoulder".  She is doing PT and massages and everything in order to avoid surgery.  Her docs said it might take 3 years to "unlock".  She's pretty frustrated!    So glad to hear you made it to Israel - my favorite vacation spot.  Couldn't go this year as sis can't travel.  Maybe next year.

Hubby is declining slowly.  He has started having trouble walking.  His knees give out after a few steps.  So he walks, then sits, then walks.  He has had several sugar lows this spring.  Most of the time he recognizes them.  Tonight - not so much.  His activity level has come to a halt.  He continues to have optical migraines where he goes blind for 2 hours.  I am doing all of the driving these days.

I'm still walking 3 miles every day.  Between that and my gardens I think I'm pretty active.

Have a good friend her who's hubby is diabetic.  We compare notes a lot.  He had to have a pacemaker put in a couple of years ago and I think he's under age 60.  He has been on a pump for quite some time.  Oxygen is not getting to his brain and he has developed dementia/Alzheimer's.  He walked away from their home, caught a ride with complete strangers, ended up on the edge of town, but safe, so now she is looking for a home to put him in or hospice.  The doctors want to turn off his pacemaker.  So sad.  Just 3 years ago he was still working.  It can happen so fast! (She's self employed in retail and has to keep her business open to pay the bills).

It's going to be a hectic summer as I'm speaking at a conference in Seattle and have lots of prep for that.  I'll try to check back in from time to time.  We are doing ok.

DW

Response to "Managing"

"Managing" wrote:

My husband does and it is almost unbearable to be around him because of all the stupid things he does and says. I worry that it will also make him be so forgetful that he will get himself into real trouble in the shop around tools and vehicles, etc. But he will not listen to my words of warning. 
The weird thing about our ongoing grief is that it is such a constant that I have trouble recognizing what "normal" would be. I am not sure to what degree this has affected my personality. Am I even able to make good decisions anymore? I love this man and am commited to helping him but as he loses his ability to think straight his requests of me become less and less "Do-able" or he'll forget and change them. I think that MJ makes his mental state much harder for me do deal with. But for some reason it is what they want. Maybe to run away from reality?  
All of this combined with his anger and hate for everything and everyone has pushed us further apart than ever before. Each consecutive step that separates us makes me feel guilty that this man who used to be my partner in crime - now sometimes straight up disgusts me. It makes me not like myself very much. I pray for him and now I pray for myself to find the love and kindness and patience to love him and forgive him his human flaws. 
Looking at your timeframe makes me so scared that I will not make it through this. It is so depressing already. And I do things that I need in my life and get out a couple times a week. I'm thinking that getting a place of my own for some of the time may be necessary to get away from it and refresh myself enough to come back at it with a kinder, more patient and loving attitude. Do you think that will help me to make it through the long haul?

If you have read past posts, you know that hubby left me for 3 years.  All I can say is that in retrospect, it was a gigantic blessing.  Not anything I had planned for.  But I certainly needed the respite and while I'm not sure it will help me through the long haul....it's gave me time to grieve my mom's death.

It also taught me that he was well enough to take care of his father ....and himself.  He's been back since last August and I do not take care of him.  I worry about them.  But if he was "well" enough to leave me to care for his father....he's well enough to take care of himself now.

And I did put my foot down in a couple areas.  If he ever threatens to leave me....he best be prepared to do so as I will be packing his stuff up that moment.  That used to happen on a weekly basis.  Not anymore!  If he gets mad and demands that I let him out of the car...I will...and I will not go back for him.  So that has changed a few things.

I keep telling myself that he picked his father over me.  For three years.  Thus, now, I have the absolute right to pick my life over him.  That was his choice.  This is mine.  And it does make things different!

DW

Glucose inbalance once again

You'd think I'd be prepared.  But I never am.  Increase in sugar lows.  Too much insulin?  Too little food?  He almost passed out twice this week.

Skin tone is very gray.

Other problems going on.  Many nights of no sleep - awake vomiting.  So I don't sleep.

You'd think I'd be prepared.  After his heart attack, bypass surgery, spinal fusion surgery...you'd think I'd be prepared for anything.

But I never am.  And I doubt I ever will be.

I was thinking about grief.  I know 10 people who have passed away so far this year.  No one really close - cousins, quasi-kin, etc.  Yet I watch the survivors grieve.  Each in very different ways.

A couple of close friends have spouses who have had heart attacks - I watch their panic set in.

Grief can make you do stupid, stupid things.  I've been there.  I've done them all.

Hubby said he doesn't want to travel any more.  I love to travel.  So I will grieve that "loss".  Is one loss bigger or smaller than another?  I'm not sure anymore.

I no longer know how to help those who are in "new" grief.  Perhaps because there has been so much in my life?  Words do not comfort.  You just get up and get on with life.  Or you don't.  It's about that simple!  I turn to my faith and I get up every single morning and start a new day with a song in my heart.  But I'm realizing that others do not understand that.  They think I should be lost in grief.  These days, I give it "10 minutes" - then get on with life.  Otherwise, I doubt I could function!

It's been a rough night.  But a new day starts in about 3 hours.  And I will get up, put on my happy face, and start the day in a positive mode.  It's only here, in this blog, that I share my sadness, my grief, my feelings of hopelessness.  That way, I can let go of them and get on with life.

Seems to be working pretty well.  :)

DW

Diabetes and marijuana

It doesn't really matter whether you live in a place where it's legal or not.....anyone can get it with very little trouble.  And hubby does.  Am I watching him turn into a pothead?  What impact does it have on his diabetes?  What does it do to lungs/body that are being eaten away by high blood sugars?

I don't have any answers.  I'm watching.  Sort of like watching a water...wondering when it's going to boil?  It does ease his pain.  He sleeps better.  He only uses it at night before going to bed.  But he doesn't get up til about 10 am.  His is lethargic.....mostly an "I don't care" attitude.

In some ways, I think it makes living with him easier.  The mood swings aren't as great.

But the "forgetfulness" is at an all time high.

Any drug that numbs the pain has to numb 100% of the sensors in the body and that includes memory, response time, thought processes, etc.

Most forgetfulness can be forgiven.  But forgetting to lock the door?  Not so much!  Forgetting what you said....problem causer.

Did he tell his physical that he is using MJ?  Of course not.  And I'm sure that would have an impact on his treatment plan.  I can't fix stupid - I hope I have at least learned that.  He's been using pretty heavily for the last 8 months.  I do see him becoming more mellow.  I am watching closely.  Not sure there's anything else that I can do.

If you've had experience with a non-compliant diabetic who uses I'd love to hear your experiences.

DW

Ulcers and other such nonsense

I am convinced that a non-compliant diabetic spouse can give you an ulcer!  And I am determined that it doesn't happen to me.  But I have my days, that's for sure.  Can't believe it's been a month since I last updated.

He went without any insulin for 5 days (last post) and he was a complete mess....not to mention my emotional status!  But we finally got his health insurance straightened out, and got the insulin.  You know, he has been on disability for 3 years now and a year ago, he went on Medicare.....and that was the beginning of a year long battle with our private insurance.  They couldn't handle technologically that I am the payor, I am not on Medicare, he is the spouse, on Medicare.  It took 5 people, 4 departments and 3 months of me calling or emailing each person every week to follow-up.  But finally, we are on the right track.  I even filed a grievance with the insurance company.

The end result is that his insurance is correct now, with the right co-pays and benefits.  However, he overpaid the entire past year and I do not have the energy to request a review of that....it's paid for, I'm going to drop it.

Completely exhausting going to battle with a private insurance company.  But well worth it.  His $667 Humulin R-U500 now costs him $40 (2 month supply).  His former $50 office visits are down to $10.  The Medicare gap is gone.  And he would not have any of these benefits if he was not married to me.  Yeah, I sort of let him know that!  LOLOL!!!

So now that we are done with the whole insurance/Medicare issues....I'm ready to get back to my life.  Hubby spends most of his day in his room.  Playing a lot of computer games.  Watching reruns of sports.  I'm writing a history book, upcycling clothes, walking with my sister, doing Bible Study, creating art.....keeping as busy as I can, creating an active live (yes, even at this age) in order to have a life outside of diabetes.  I'd say it works 90% of the time.  And that is good.  I am setting goals, working to achieve them, trying to maintain as "normal" a routine as is possible.  And working on my weight again.  I am up 15 pounds since he moved home and starting the long journey of getting that back off.  For the most part, life is good for the moment, yet I realize that it can all change in a heartbeat!

DW

So bad it's almost funny

If you have followed this blog over the years, you will know that I have given up.  My mantra, "you can't fix stupid"!

So we were at the in-laws place finalizing some estate stuff and left to drive home Sunday afternoon.  We were packing up and I started asking him questions, "do you need to take...." and he got pissy and said, "I have my checklist and I will get it when I get to the list."

I shut up and packed up my stuff.

We got 6 hours away and he realized he did not pack his insulin.  I had seen it in the refrain....but it was on his "check list".

We found a hotel and yesterday morning, he called the pharmacy.  Made up a lie rather than simply telling them he forgot it 6 hours back.  They needed to check with is doc to see if they could refill it.

I drove the next 6 hours.  Got to the pharmacy which is an hour away from our home and they had gotten the doc's ok, but they don't stock Humulin R U-500 - they would have it today.

Today, he drove the hour and they had no record of any phone calls.  No Humulin.  Will have it tomorrow after 1 pm.

That means he missed 40U Sunday, 80U Monday, 80 U today and at least 40U tomorrow.

Yep, he is about a cranky as I have ever seen him.  Pretty much slammed the door shut to his room, not speaking to me, grumbling, snorting, trying desperately to piss me off every time he surfaces.

But this is his problem, not mine.  All of it.  I went to see my sisters today and we had a great time.  Then I unpacked most of what I brought home and now I'm cleaning the teapot, bread machine, etc., that he had been using down there the last 3 years.  I swear, the man never cleaned a thing.  The toaster oven (it's a $350 oven or I'd throw it away) is so bad....but I'm making progress.  Exhausted.  But ever so grateful to be home.

Am I worried that he might go into a coma? Of course I am.  I'll deal with it if and when it happens.  There is nothing I can do to make him think, reason, plan....I have learned.  He is like a bull in a china shop - going to do it his way, every step of the way!  I just sit back and watch.  It is his body, his disease, and he won't listen to me, gets upset when I remind him of things or ask him about things.....so yep,  I simply sit here and wonder why anyone would treat their body the way he treats his.

Most of the drive home, I pondered his need to lie to the pharmacy and how much he must be lying to me.  I wonder if he lies because he lies to himself about his diabetes?  Interesting thought.

At least we are home. :)

DW

Eyesight and filth

I understand that diabetes will attack the eyes.  Hubby has been having events which he calls white migraines.  He will get the headache, everything goes white and he cannot see.

But I'm wondering about other vision.  He had cornea transplants at age 30 and now wears hard lenses over soft lenses in both eyes which are supposed to correct his vision to 20/40.

We are at the in-laws working on some estate issues.  I pray this is my last trip here.  I left in May and he came home in August.  He's been here for 2 weeks this time and I flew in yesterday.

I cannot begin to describe how filthy the toilet is.  Stuff piled everywhere in this tiny place.  It's like he comes in and just lays things down wherever there is a spot.

So I have started cleaning.  Can he not see the urine stains on the rug under the toilet?  Or is it that he just down't care?  Can he not see that the stopper in the sink is covered with toothpaste skum?  Or does he just not notice?

I am packing up everything that is mine and taking it home this trip.  So do I even care?  He can keep this place as a place to stay when he comes to visit his brother.  Our "real" house is quite small and I don't have room for much, so I will leave everything here except for personal items.  I simply can't keep up with the cleaning - I just cleaned his bathroom at home when he left for this trip!

The piles that I have to look at are gone, the bathroom is clean.  I have packed several boxes already.  I think I'm done for the day.  And yes....it's the day before Christmas.  Not exactly what I planned to be doing but a bathroom at McDonald's was cleaner than this one!

May 2016 bring great joy to your life and may your non-compliant diabetic have their blinders removed!

DW

Holding our own

Well, we still haven't resolved the pharmacy issue with our insurance.  But I did go ahead and switch to high option for 2016.  I decided that I would rather be broke than risk losing the house to medical bills next year!  Such a choice, huh?

Things are on a pretty even keel around here.  We are going to head to his parents in a couple of weeks to finalize a few more things on the estate and close the house up.  I will get a few things of mine that I left down there.  Hoping to only be gone 10 days, but we are driving and it will all depend on what weather we run into.  It's about 1000 miles away.

We are bringing back a power lift chair and a jazzy wheelchair in the event they are needed in the future.  So I have been purging the house, deciding where to put the chair and cleaning out the front of the garage so the wheelchair can go out there.   This is a tiny little 1100 sf house, so there's not much room for even 1 more chair!

I will get a few things of mine that I left behind and bring them home.  And then there are no plans to return.  His brother will be there this trip to help with the estate issues.

There have been no highs or lows, no medical issues, and I almost feel like this is the calm before the storm.  Ever get that feeling?  I am enjoying the quiet.

Hope you all had a wonderful Thanksgiving - there is so much to be grateful for right now.

DW

how do you pay for all those medical expenses???

First off....feel free to post any comments you want, good or bad.  However, do not post comments that link to your website wanting to sell a product or give some kind of advice.  Just leave the link out.  If the link is there, I will delete the comment and it won't get posted.  I'm not willing to be used as a vehicle to further your business.  :)


DW2 wrote in a recent comment:

once he fell and hit his head, requiring one or two stitches. Another time I found him lying flat on the floor with hs eyes shut on the kitchen floor between the counter and the refrigerator.

and it got me to thinking.....how do you continue to finance the increased costs associated with diabetes?  Not just the medications and office visits....but the emergencies.  We have excellent health insurance - due to my past employment.....not his!  I am so grateful for the decisions I made throughout my career that afforded me the ability to retire at age 50 with such excellent benefits.  But what if I weren't so fortunate?

It is open enrollment time and hubby is now on Medicare.  We are going from low option on my plan to high option - another $275 per month!  But I feel that we have to increase the coverage as the co-pays and deductibles on low option will eat us alive.  And because the premiums are taken out of my retirement checks, I've told him he has to write me a check each month.

I can already see what is going to happen.....there will be excuse after excuse as to why he won't write the check - so I will have to manage my expenses on $275 less per month.

Which simply put - aggravates me!  Why am I paying for his health insurance at all?  Because I'm a good wife.  LOL!  But there are moments when I have to ask.....why should I?  Remember, he does nothing to take care of his health.  Except take pills.  It is completely and totally frustrating. 

Last month, his pharmacy dinged his bank account $966 for his Humulin.  They held the month out 9 days.  Fortunately, he had the funds to cover it.  He called the day it happened and they claim they didn't "see" his supplemental insurance on my account.  What if he hadn't had the funds to cover that for the 9 days?  What if other checks had bounced because of this?  So I filed a grievance with the health insurance company in order to get them to change their policies to insure this doesn't happen to him or anyone else.  I am learning the grievance process now.  Nothing happens fast in a huge insurance company.  We drove 75 miles to attend 2 meetings that we could schedule on the same day. Everyone agreed it is their fault....everyone agrees what needs to happen - no one knows how to make it happen.  I get a phone call about every 3 days telling me they are "working on it."  

I feel certain that his next prescription will come due before they figure out what has to happen.

And I'm sure we are not alone in this journey.  I'm sure it happens all the time.  But when it happens to you and it's almost ONE THOUSAND DOLLARS that is taken out of your account inappropriately....it tends to make you sit up wide awake!  LOL!!!

So lets do that math.  I'm going to be out ANOTHER THREE THOUSAND THREE HUNDRED DOLLARS in 2016 - that's the $275 increased insurance premiums times 12 months - because of this man who refuses to comply with his diabetes plan.

Hmmmm........

What is your greatest fear?

I think that is such a brilliant question.  As the spouse of a non-compliant diabetic  - what is your greatest  fear?

Wow!  Not sure.  It could be the progression - not knowing what will happen next.  Will he have another heart attack, need more back surgery, have his kidneys fail completely - he's stage 4 ERSD and will refuse dialysis.

Is it the prospect of future hospitalizations, medical bills, and how do we pay for them without losing the house?

I don't fear death, or being left alone (been there for the last 3 years), or coma (been there with him on that as well)  

Do I fear that he will die on "my watch"?  Perhaps sometimes.  I think it is the old question of what to do when.  He has a DNR in place, but if I don't call 911 immediately - what are the ramifications of that decision?

Perhaps I fear the unknown - just not knowing what could happen at any moment.  No - once you have jumped on this roller coaster ride of highs and lows....I think you just learn how to be flexible and go with the flow of the ride.

What about crazy anger outbursts, sugar lows or highs, this emotional spikes and rages?  No - I have learned to live through them, sad as that sounds.

No, I really do not know what my greatest fear is.  What's yours?

Diabetes, dementia and alzheimers

We know for a fact that diabetes eats away at the nerve endings in the hands and feet.  Then that process progresses to other organs.  Including the brain.  We just don't know at what rate.

We know what the symptoms of dementia and Alzheimers are.  But when it comes on quite slowly, over a long period of time, to we acknowledge the signs, or do we simply write them off to other aspects of life?

Last Friday, hubby went to the store and came home with 2 nice steaks and said he would grill them for us sometime that weekend.  I said, "I'm not going to be here!" and he exclaimed, "oh! that's right!"

Wouldn't have given that conversation a second thought - EXCEPT - it was the 5th time I had reminded him in a variety of other conversations over the past week that I would not be home that weekend!

We all forget.  But to have to remind/repeat 5 times....is that normal?

This morning he asked me what I wanted to do for lunch as we were driving to a neighboring town to do a little shopping.  I said, "let's decide when we get there."  Not 5 miles down the road, he asked the very same question and I said, "I thought we were going to decide when we get there" to which he replied, "oh, that's right - I forgot."

It is now happening 2 - 3 times every day.  I try not to worry about it as it's just superficial questions.  But how long until he forgets where he is, who I am, whether he took his insulin or not.

I think the journey is about to get quite interesting!

What will I do if he goes into a diabetic coma?

He asked me that one day.  He said, you'll dump me in a nursing home!  To which I replied jokingly, "glad we have one just 2 blocks away!"

He did NOT see my humor!  LOLOL!!!

So I sat here and head a bit of a heart to heart with him.  I know his biggest fear is being left alone, being "dumped" somewhere.  But I also know he had never thought it out.

I confessed that if I find him in a coma, I will do everything I can to save him.  I know the "drill".  And I will call 911 which he absolutely, positively, without question does NOT want me to do.

But the more I told him my thoughts, the more he calmed down and came to realize the predicament I would be in.

He weighs about 280 lbs.

In a coma, he would be "dead weight".

Could I even roll him on his side??  I couldn't possibly lift him, get him up off the floor.  If he had slumped over in his chair, could I even get him on the ground?  There is the physical aspect that he had never even considered.

If he did not come out of the coma, how long do I wait to call 911?  And when they arrive even 30 minutes later, how do I explain to them the delay in calling?  And if he never comes out of the coma, how do I explain that delay to his children?  How do I explain that their dad told me to never call 911 and expect them to understand?

No, I will call.

And then from there the discussion went on - what do I do if he has a stroke?  Yes, I will keep him at home as long as I can with as much help as I can get, but there is only so much available.  Again, I cannot lift him to the toilet, I cannot physically roll him over if he cannot assist me - there are so many levels of questions that can't be put into a hypothetical situation.  

But he started to realize that if I put him in a nursing home, it would only be because I cannot physically care for him, not because I don't want to.  It was if lights went off in his head and since that day, he has never again accused me of wanting to "dump" him.

Sometimes talking is good!

I also realize that there was a time in my past that I was simply scared to death to leave him.  Afraid that if I did, I would come home and find him in a coma.  But I have finally realized that was a very unhealthy state that I was in!  If he goes into a coma, it's because he didn't do what he needed to do either through his medications, his diet - the bottom line - it has nothing to do with me.  And when I get home, I will do whatever I need to do at that point to take care of him.  But I cannot just sit here waiting for the "what ifs" to take place!  Maybe that's when I started getting my life back instead of living his life so much of the time!

I think my current question is more tied up with dementia and Alzheimer's.  But that will be another day's discussion!    Hope you have a great day - get out there and do something for yourself today!

DW

update from wifeofadiabetic2

She has a new blog url - wifed2.blogspot.com

So if you have lost track of her, go check it out - all is as good as can be expected.

_____________

In the past, I have written quite a bit about the importance of finding a passion in your life in order to deal with the diabetes in his life.  I think there are several aspects to this that I am just now discovering.  And perhaps he had to leave in order for me to step back and breathe in order to find multiple passions in my life.

It started with gardening.  I woke up one spring day in 2013, went outside, and just started digging up sod in the year.  It turned into my therapy.  Digging is great for anger.....take it out on the ground!  Something new sprouting up from the ground gives hope.  Each new bloom on a flower reminds us of the beauty that's out there....I could go on and on.  But when I started that morning, I just needed desperately to do something, anything!

So gardening has become my summertime passion and when hubby moved home this summer - in the middle of the summer - I couldn't stop.  I had to get up each morning, get outside before it got hot, and get done whatever it was that needed to get done.

And he had to take care of himself.

I wasn't available.

It's a new routine.  Quite different that where we had been 3 years ago.  And it took him awhile to adjust to it.  A number of "discussions".  But why should I change my life, my routine, my day just because he moved back home.

And why/when/how had I changed in the first place before he left?  Oh, we all know - it's a routine, gradual, not-really-paying-any-attention thing that just gradually evolves.  The more he needs help, the more I gave up the things I loved to do in order to stay and help him out.

In other words - I got suckered in!  LOL!!!

So, now that summer is over - what is my winter passion?  Not sure where that one ends!  I am an artist, so back at my creating.  But I am also researching a local history story that happened about 150 years ago.  A murder/mystery of all things.  And I'm a genealogist.  Have been doing genealogy since I was 16, so I am looking at the family histories of the families involved in the murder/mystery - about 20 different families, some interrelated, some not.  And there's an ethnicity to the story so I am studying that as well!

Gets me out of the house to the history center, the clerk and recorder's office, the assessors office as I want to know which house each family lived in, what were the connections between each family, between them and the murdered guy, the murderer.  What makes this story so interesting is that there are 3 possible murderers!!!  It truly is a wonderful story and I'm deep in the midst of research.

So that presents the question - can you be too busy?  Well, I suppose any human being can.  But one must find balance as with everything in life.  I've been asked to speak about my research in a meeting in a couple of months and I want to finish a couple research projects before I'm done.

Yet I know that I still have to clean the house, walk with my sister, grocery shop.....the mundane things of life.  And I need to find time to "force" him to socialize.  Whether that be with family visits, eating out, running errands - he does need to get out once in awhile and he wouldn't if I didn't "drag" him with me.

This all comes down to the final question this morning - do you have passion in your life?  Do you have personal goals, unrelated to your spouse's diabetes?  Or do you allow HIS disease to consume YOUR life 24/7?  If so, time to get up, get out, find something you absolutely love to do, and then do it!!!  All the while remembering what this blog is all about - it's about a completely, utterly, totally non-compliant spouse who refuses to do what he needs to do in order to handle his disease.  That is HIS job, not mine!  And I think we tend to forget that at times.  I know - there are those with diabetes who think I'm a complete bitch!  But I happen to think if you have a disease and you refuse or won't take care of yourself, then you can't blame me for what happens to you!

Which begs the question - what will I do if he goes into a diabetic coma?  We'll tackle that one in the morning!  For now, have a great day - go find your passion!

DW

from DW in Texas

she wrote:

DW...I can't thank you enough for your posts...(just wish they were more often)...They HELP so much in my darkening world...I truly look forward to reading them over & over... You actually make me feel there is something else in my life besides dh & all that goes with it...please know you have a gift & pray you'll continue sharing/posting your "lifeline" for others...DW in Texas

Thanks.  Now that hubby is back living here I'm sure I will have more to post.  I have always said that if my "writing" will help one other person, I will keep it up.  :)

So an update on hubby.  In 2011, he had spinal fusion surgery.  You can go back through this blog and find the posts as it was a horrific experience.  It was his lower back that was fused and the surgeon said that in 5-10 years his upper back would need it.  He has been in excruciating pain and the X-rays show that yes, sooner than expected, he now needs the upper back fused.  I told him we could at least talk to the surgeon. 

But I will not do what I did last time.  People say that I "saved" him by becoming his advocate.  There truly were a hundred things that went wrong in that hospitalization.  But I cannot do it again.  First, we have moved and it would be about 50 miles to the hospital and I won't be "on call" to make that drive in the middle of the night.  I promise I will be there during the surgery and I will go every 3-4 days and spend time, but I will not be the advocate again.  Second - I'm older and wiser now.  I have a friend who's hubby had to go to the VA hospital which was about an hour from their home.  She simply couldn't do the commute and visited him once a week.  I think he was in for 3 weeks.  She said it kept her sane and I do understand that - there is something about being in a hospital 24/7 and not being the patient, not having access to mind-numbing drugs, that just isn't quite right!  LOL!!!

Hubby does not have the referral yet.  So it might be a few before we see the surgeon.  In the meantime, he is spending just about 24/7 in his room, either sitting in a chair, or in bed.  No exercise.  No socialization.  I doubt he could due to the pain.

But I am so dang busy I can't pay attention!  It's fall and today I had to drain and cover the fountains and pond, take off the pergola cover, take down the screens from the gazebo (yes, we have both!) and get ready for snow.  OK - I will never be ready for snow!  Then we drove an hour to the nearest town with a PetSmart to get some pet food and other supplies.  Love living in a tiny village....not so much when it comes to getting stuff you need.  And of course, Walmart doesn't carry the stuff we need.  Came home and finished in the yard - think I'm ready for winter here!  

If you want to contact me, you can do the yahoo email, but I may not get to it if I forget.  You can always post a comment here and post it anonymously and those send alerts to my "real" email.  :o)  Sorry, but I still feel the need to keep myself hidden so that I can be as honest as possible about what happens to the body of a non-compliant diabetic.  Yes, I have wondered how much of his back problems are due to his high sugars eating away at nerve endings and other tissues.....or is it just something that would have happened regardless?

Todays suggestion - find something you love to do (gardening/crafting/genealogy.....) and do it with so much passion that you don't have time to think about diabetes.  After all, it's not your disease.  :)

DW