Monday, November 14, 2016

Balance

Managing wrote:

This topic has nothing to do with your post I'm attaching it to. Since your experience has been so helpful in offereing some kind of "known" into our lives that follow your blog. . . I wonder if you will consider continuing your blog after your husband passes on?It sounds a little morbid and vouyeristic, but I suffer so greatly in two areas and one of them is I am sure I will never remember my husband as anyone other than who he is now; with all the anger and bad behavior. I don't want to remember him that way. So I wonder as you go through this process, if you discover that his earlier personality and how you guys felt together would come back to your memory as time goes by or right after his death, or just however that plays out. What do you say?

I don't know if I will continue to write....or for how long.  I think I will need to write through the grief.

In the past 3 weeks, 3 women that I know have lost their husbands.  One to diabetes, one to age, another to a 15 year disability.  All 3 men were on hospice.  And all 3 of these women have told me that even though they knew their husbands didn't have long, they were still "shocked" when they died.

It made me wonder - how do you balance the knowledge that he is going to die with the fact that he is gone after it happens?

Hubby burnt his finger quite bad today.  He said he didn't know it was resting on something hot.  He couldn't feel the heat.

And he has had a horrible amount of pain today with his sciatica.  So I googled that and it could be from his kidney disease.  He said he can't remember doing anything to pull it.

Will he go to the doctor?  No.  So I have to find balance between feeling bad for him and thinking that he is stupid because he won't even ask if there is something they can do for his pain.

Balance.  We have to find something positive and good to balance out the negative.

Art gives me balance.   I have just finished 4  classes over the past 6 weeks.   They have brought new friends into my life and I am grateful for that.  They have helped the creative side of my brain sort of wake up and I'm grateful for that.  I am having fun and one class is a never-ending class that meets once a week and that is turning out to be the most fun ever!  It's bringing some sense of balance into my life and gives me something to look forward to.

In all this, I have met a young artist.  Quite good.  He was in Iraq in the Army and hit with sarin gas and has developed MS.  He's married with 2 young kids.  Some mornings, he can't make his legs work.  Other days, he does fine.  I have been driving him to our classes and am so encouraged by him.  He says that his body is that of a 65 year old and I can see that some days.  Yet he gets up and paints a painting every single day.  He has such determination to create. And he motivates me to stick with my art and with my classes.  He brings another element of balance to my life.  Perhaps that's what all of us need.  Just an ounce of balance.  :)

DW




Saturday, October 22, 2016

Lethargy

For lack of another term, I will use lethargy.

I have noticed that he can no longer pick up his feet when he walks.  So he trips a lot.  His feet get caught in rugs and on carpet runners.  Shuffling.

Left the house and "forgot" to close the front door.

Got out of the car and "forgot" to close the car door.

Little things like that.

Yesterday, I'm not sure how, but when he opened a bottle of diet coke, it exploded.  Gushing out.  He just stood in the middle of the kitchen.  Did nothing.  I yelled to get it over the sink and he said, "I'm trying to".....but he didn't move.  He just remained standing there in the middle of the kitchen.

It's like his mind thought he was moving....but his body wasn't.

And then I had to mop the floor, wipe down the cabinets, the stove, microwave, sink, countertops, refrigerator....it had spewed everywhere.  Half the 2 liter bottle was gone!

I am trying to be more aware.....I have to be.  Can't leave and have the front door wide open.

I have read enough to understand that this could be either diabetic neuropathy, kidney failure, or additional heart problems.

Almost like watching a slow motion movie in real life.

Life can be so interesting.  :)

DW

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.

DW



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.

DW

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 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


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!  :)

DW