Saturday, October 15, 2016

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.


Wednesday, September 21, 2016

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.


Monday, September 12, 2016

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.

Saturday, September 03, 2016

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 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.


Wednesday, August 24, 2016

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!  :)


Tuesday, August 02, 2016

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!


Sunday, June 12, 2016

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.