Widow's brain

Well, there's a new term that I had never heard!  But it explains so much of what I've been going through. You can google it.  I thought this was a good article (click here)

A few days after he passed away, I received a sympathy card from a dear elderly friend who lives about 150 miles away.  I couldn't figure out how on earth she had heard of his passing.  I picked up the phone to call her and thank her for her sweet note.  She said that I had called her the day after he passed away.  I had absolutely no recollection of making that phone call.  I still don't remember it.  And I probably never will.

Yesterday, one of my sisters said to me that I was kind of funny after he died.  I would say and do the strangest things.  So I decided to google and that's when I first saw the term "widow brain".  Who knew?

Yep, I think I might serve as a textbook case.  I knew I was in a fog and I just allowed it to happen.  I didn't care who did or said what.  I didn't really understand why I didn't care.  I remember so many people surrounding me and I just wanted to be alone.  I remember watching hours of Hallmark Christmas movies.....and I never watch Christmas movies in July!  It was simply my brains way of insulating itself, protecting itself.

Then today, someone posted this on facebook:

and that hit me hard.  It is so true.  Every. Single. Thing. Changes.  

No matter how much I hated his diabetes - we still did things together.  We were a couple.  And everything is changing/has changed.  I even lost 10 pounds.  

So I am still learning.  And while the diabetes aspect of my life has ended....the repercussions of it will never, ever end.  I wish I had known about widow's brain before he died and maybe I did - I just forgot that I did. LOL!  Yes, the humor is starting to return.....ever so slowly.  Life is getting into a routine.  I get up and walk with my sis, I spend a couple hours tending the gardens, I spend about 4 hours doing paperwork and then I do something I find fun.

One of the rather important things is once you get done with estate papers (to the point where you are just waiting for responses and more paperwork) you have to re-do your own paper work.  My will, medical and financial power of attorney all needed new beneficiaries.  My bank accounts, life insurance....all need new beneficiaries.  So just when you think you might be done with all of "his" paperwork, you have to start in on all of your own paperwork.  And there are days when it seems endless.  Four hours a day because sometimes, just one entity takes four hours.  That's how much time I spent trying to close out his 2 phones and 1 sim card for wifi hotspots while traveling took.  And then he hand another carrier with a sim card for traveling.  I'm grateful he had an app that had all of his accounts and passwords in it - that has helped immensely!

This week, I think I'm finally coming out of my widow's fog a bit.  I have started a daily diary on paper.  I write down what I need to get done today (and sometimes tomorrow).  I have daily goals.  I am keeping copious notes of who/when I talk with someone and what they tell me.  I have follow-up tabs on pages that need to be taken care of down the line.  If I don't do that, I know I will forget.  I should have been doing it since day 1 - but I didn't!

I'm feeling a little more organized.  I can't begin to look at the entire task ahead of me.  Downsizing.  Selling the truck and travel trailer.  Selling the house.  Keeping up with the flower gardens.  Giving up so much of what we both loved.  So I am breaking it down into simple tasks.  Do this today.  Find this today.  And I think it is helping.

They say don't make any major decisions for a year.  But I cannot keep this house.  It will financially drain me.  I have put my name on a waiting list in an apartment complex where my sister lives.  There are no vacancies and a year waiting list.  I know the management so there's always a chance my name might get bumped to the top.  Our mom lived there and they loved her.  

Monday it will be 4 weeks.  And I still don't have the life insurance paperwork.  That is a surprise.  The fact that it has taken this long just surprises me.  My advice....have at least $5k in cash in a lock box at home.  You will need to pay for funeral expenses, ambulance rides, health insurance co-pays, utility bills (they don't seem to stop), food, gas, etc.  I am surviving.  But barely.  Once the life insurance gets here, I will be just fine.  But that could take another 6 weeks.....a total of 2 1/2 to 3 months after death.  Yep, that is a surprise!

And this is a time when you just don't need surprises.  Not like that!  But it will get better.  I do know that.  And I am blessed beyond measure.  I have 2 sisters who live right here who are here almost every day.  I have a brother-in-law who will drop whatever he is going at the drop of a pin to come help me.  One of my sisters is a widow and has been through this and has been gently counseling me. So I know I am so much better off than so many.

I am learning that you cannot live on "what-ifs".  You go forward with what is.  You deal with life one step at a time and I know that it won't be long before there is a new, different beat.  Things will go on - but they will be different.  

Someone asked me the other day, "what's next for you?"  and I said that I didn't know.  It's something that I will have to figure out.  But that's a good question.  What is next in my life?  Do I move into an apartment and just live a daily life?  Or do I go do something extraordinary?   There is a light at the end of this tunnel. I'm not seeing it just yet, but I'm learning a little about why I can't see it - perhaps widows brain is more like widow fog - you just can't see it yet.

DW

No one ever knows how to grieve.

I think I've grieved every loss in a different way.  My dad passed away 26 years ago.  That was the first, the hardest, the longest.  Mom died 6 years ago.  I lost my best friend, my counsel, my support.  And I grieved harder than when dad went.

Last fall my son died.  I honestly thought I would die.  But then my other son got so upset that I had to snap out of it and "be here" for him.

And now hubby.  How do I grieve his passing?  There have been many wonderful moments in our life.  I posted the bad ones here.  I posted the reality of diabetes.  I truly want to just forget all of that and focus on the good.  I want to remember him as the man I loved, the man I fell in love with - the stable, sane, good sugar level guy.  Yet it is diabetes that killed him.

The death certificate showed the reason for death as "respiratory failure".   And chronic heart failure as the secondary cause.  Which is correct.  He had a heart attack.  And then he quit breathing.  The very last thing was that he just stopped breathing.  Respiratory failure.  You and I know that it was the high sugar content that ate away at his body, clogged his arteries, caused the heart attach which caused him to stop breathing.  But to the world - nowhere does it say diabetes.  How sad.

And I have absolutely no say in what goes on the death certificate.  That is left up to the hospice doctor.  And they admitted him as a chronic heart failure patient.  Because that's what he was discharged from the hospital as.  Because he entered the hospital due to a heart attack.

It makes sense.  But is it fair?

I am grateful for his sake that it is over.  Do I miss him?  Unquestionably.  Do I miss his diabetes and all of it's complications?  Of course not!

I have moments when I want to crawl in a hole and become a recluse.  I want the world to go away.  Yet I know I can't allow that to happen.  I have forced myself to allow friends and family to visit.  To answer emails.  To appear "ok".  Life has become a long twisted nightmare of notifying the world of his death.  Utilities.  Banks.  Insurance.  Vehicles.  Phones. Death comes easily but deleting the life that existed is nearly impossible at times.  I want to give up.  But I keep plodding along.  I want to just quit.  But I know I can't.

Is this the hardest thing I've ever done in my life?  At the moment it seems like it is.  But I know in the overall scheme of things it isn't.

His daughter calls and wants comfort from me.  Yet I think I'm the one who needs to be consoled.  How do you comfort someone else in the midst of your own grief?  I don't have the answer to that.

I've hit the anger phase.  For a million reasons.  I know the steps in the grief process and I know that I will eventually go through them all.  I just hope the anger phase is very short.  I'm trying hard to focus on the good thoughts.

Being deeply religious - I know my Lord will sustain me.  I know that it will be OK in the end.  I know HE will take care of me.  It's just the nearly impossible task of getting there.

As a funny aside, hubby was a computer programmer, a genius in 3D printing arena, and a wizard at designing with led lighting.  I now have the task of putting parts together.  Where's the power cord to the Kindle?  What does this computer chip belong to?  I know these are led light strips....but what goes with them?  Google has become my best friend, ebay might be an even better one because I can give it a non-descript definition and usually find a picture of what's in my hand!

What will I do with everything?  Sell what I can on ebay.  Then a garage sale.  I have to clean out and downsize and then decide if I am going to sell the house or keep it.  Decisions.  Something that seems to take place 24/7 at a rapid-fire pace right now.  I'm most likely going to sell the travel trailer and truck.  I can't see me trying to hook it up myself.  I was a miserable failure at backing the thing up.  And I'm not sure I want to go travel alone right now.

He was cremated.  His wish.  His ashes will be spread in the mountains where he grew up.  His brother is coming Monday to pick up the remains and handle that for me.  Not sure I could do that.  So many things to think about, decide upon, take action.  Right now, closing cell phone accounts has been the worst....and it's still not done.  But I'm getting there.

I hope you have a support system in place.  My sisters have been here daily.  My friends visit, call, text.  The cards have been pouring in -from people I haven't heard from in 20 or 30 years.  That was surprising!  I have an amazing support system and am very grateful for that.

Many more decisions to come in the future.  I know I will make mistakes.  I will take my time on the major ones.  The minor ones will fall in place along the way.  It really just takes time.  Not much you can do in the first 10 days.  Not much you can do without a death certificate.  Plan your days.  I get up and walk with one of my sisters.  Then I garden for an hour or so.  Then I come inside and do a couple of hours worth of paperwork.  Then I run errands.  Next up is something enjoyable or relaxing.  Lunch with friends, an art class - something that brings me joy.  Then I start my evening with a movie on and a box of things to sort beside me, my laptop in front of me and a yellow sticky pad next to me.  It seems to be a good method of balancing life, getting things done and getting through the grief process.

Life goes on.  But it's not the same.  I am still learning every single day.  We should have done a better job of preparing for this.  We should have had $5K in a safe at home.  I should have paid more attention to simple things like setting up Plex, what to do if the door bell quits working due to a storm.

Yes, we had the worst storm Monday evening that they've had in 30 years.  Flooding all around me, but I was lucky that there was no damage here.  Yes, life goes on.  I will be just fine.  But I hope those who have been reading my blog will take this week to prepare themselves as though this was the last week you had on earth.  Get the paperwork in order.  Make it easy for your spouse.  Don't delay.  I thought we had another year.  We didn't.  Take advantage of my life and make yours simple.  Because even when you are gone, your loved ones are here and perhaps not in the best mental state to make all  the decisions and choices that they will be forced to make.

But no matter what - it will be ok.

DW

PS.  I just checked my yahoo email and I hope I have responded to those who wrote me.  If I missed you, I'm sorry.  Thanks to each of you for your kind words and prayers.  I pray that your life will be blessed.

It's over

He passed away Monday evening.

Because he was on hospice care, I kept a log in their manual.  I'll post what I wrote:


7/16
9:55 am  I called hospice.  No one had called or come out since Friday night when we registered with them.  We had requested pain meds and anti-anxiety meds.  And this morning, we need to refill his nitroglycerin tabs

He got up and walked down the hall without oxygen to the kitchen.  I fixed him breakfast. We sat at the table and chatted.  He went to the bathroom, changed his shirt, brushed his teeth, shaved, took his meds and put his contacts in.  I thought, "wow!  we're going to have a good day!"

11:45 am.  He lost consciousness for 2-5 minutes.  Glucose 110.  H20 99.  HB 65.  I called again and said I needed someone here ASAP.  My brother had just arrived for a visit.

Called both sisters and brother=in=law to come.

11:55.  Donna here.  She was the nurse.  BP 80/40.  Ox 70 with CPAP.  He asked for morphine. He had refused it before.  He pulled me down close to his mouth and said, "if my throat swells shut, don't do anything to stop it."  His pain was at an 8.

As a note, the last time he had morphine was 2000 and he had vomited violently and his throat had swollen shut.  So he had declined it up until now.

I said to him, "you know what this means?" and he said, "the end".

The nurse started him with a low dose of diluted for pain and lorazepam for his anxiety.  She left to go get oral morphine

1:48  gave him .3 ml morphine.  he dozed off.

2:28  he woke up, tried to sit up.  Said he feels fluid building in his chest.

3:02  .3 ml morphine.  pain at a 4+

3:22  pain at a 6.  took a nitro tab

3:48  pain 8, radiating from his chest down both arms

4:00  gave him his dilaudid and lorazepan.  Pain at 8.  .3ml morphone

4:07 pain still at 8, no relief

4:17 called hospice, pain still at 8

4:29  pain at 6

he calmed down.  Sent my sisters and bro-in-law home.  My brother stayed.

5:08  pain at 8  .3ml morphine

5:19  pain at 8.  nitro tab

5:40.  nurse called.  She said to increase the morphine to 1ml - a full syringe.  It goes under the tongue to dissolve.  It was ok to go ahead and give it to him now.  I asked him if he wants it and he said yes.  Given at 5:45 pm.

He said that when he lies back in his chair (he had been in the recliner all day) that it feels like his lungs are filling up so he stayed at about a 30-45 degree angle.  He was having lots of sharp shooting pain episodes.  You could tell because he would burrow his brows and wince from the pain.

6:23  Nurse called.  His pain was 7-8

6:33  h2o 99  HB 80.  He didn't want morphine

6:46  pain still at an 8

6:57  intense pain, gave him a nitro tab

7:00  he had another episode - jerking movements, rolled his eyes back up into his head, grabbed his left chest

7:05  he asked for morphine - gave him 1ml

7:10  I was holding his hand, sitting next him.  He started clutching my hand really hard and I said, "sweetie, you can grab as hard as you want."  He looked at me with so much sadness in his eyes, then he clutched his heart, came forward in the chair and I could tell he was in excruciating pain.  I was crying and I kept apologizing that there was nothing I could do, nothing else I could give him to help him.  He went into a seizure and then he quit - everything quit.  He stopped breathing.  It was over at 7:15 pm.

I thought I was going to die right there with him.  I cried and cried.  I was so helpless.  He had been in so much pain all day long and there was nothing anyone could do for him.  My brother, sisters, brother-in-law had been in and out of the room.  I didn't leave anymore than I absolutely had to.  I just kept talking to him, telling him it was going to be ok.  Telling him how much I loved him, how good he had been to me.

I felt sorry for the nurse.  She was there with us most of the day, but she had another patient in a neighboring town and she had left about 6 pm.  I think she stayed past her quitting time.

I'm not sure what the death certificate will say, but it will be his heart.  Not diabetes.  That's so unfair. Yet it was his heart that gave out.  I know that.

The night nurse came to check his vitals.  His time of death will be listed at 7:39 pm.  She called the mortuary and it took them about an hour to get here.

I saw with him the entire hour.  I had time alone to say the things I wanted to.  I had already said them to him a number of times in the past week....but I needed to say them again.  I know that in the end, he loved me.  He had made peace with his children and his brother.  He was ready.  But not being able to relieve his pain is something I will never forget.  I was not prepared for him to suffer that much, that long.  I had thought that with hospice, they would do more to comfort him.  But they couldn't.

I had to call his son.  I couldn't get ahold of his daughter so asked his son to do that.  Called his brother who had been texting me all day.  Those were tough calls to make.  His daughter called me.  Each time I had to go over the above scenario.  I was unprepared for that.

The hall back to his room is narrow and it's a sharp corner.  They couldn't get the gurney into the room.  I couldn't watch.  I know they took a cot in, put him on the cot, and somehow got him outside. I don't know why - but there are some things you just don't need to see.  That was my line.  I stood outside and waited for them to bring him out.  That was probably a mistake.  But for whatever reason, I was suffocating and I couldn't stay inside the house another moment.  My brother was at my side.  My brother-in-law was helping get his body out.  Watching his body leave the house will probably be imbedded in my mind forever.

And then I went numb.  I just felt nothing.  Probably because I was drained.  I sat in my recliner surrounded by my siblings.  I wanted to be alone.  That wasn't going to happen.  My brother-in-law finally left to go home and take care of their cats and dog.  My brother stayed til 10 pm.  Then my 2 sisters asked which one should stay.  One had taken a pain pill and I didn't want her to drive, the other lives 2 blocks away, so she went home.  I tried to sleep in my bed, but ended up in the recliner.  I did take a sleeping pill.  My brain just wouldn't shut down.

This morning my sisters took me to breakfast and then to the mortuary.  He wanted to be cremated.  He did not want a funeral, viewing, obituary.  He made that part simple.  The contract was short.  Yet still, $1500.  I paid cash.  It will take 5 days to get the death certificates and there's not much one can do until then.

Got back to the house and sent my sisters home.  I needed to be alone.  I needed a long hot bath.  I think I had a shower Friday morning before I went to the hospital to bring him home.

Then I tried to get into his computer.  He said that there was an app called 1password on his desktop and all his passwords were in that.  Well, that app wasn't there.  I couldn't get into his iPad or laptop.  But I managed to get into his iPhone and from there I finally (after 4 hours) found an app with a different name that had his laptop and iPad passwords.  I'm in all those....but I'm unable to access his bank accounts online.   So even though I thought we were prepared....we weren't.  Lesson learned.

Someone asked me if I would keep blogging once he passed.  I'm not sure.  But I think I will for a few days/weeks.  It's good therapy and I do need to continue to keep notes until this is complete.

It's been a very long 2 days.  It's 1:30 am.  I can't sleep.  But maybe now that I've written this down, I can let go and won't have to repeat it over and over in my head.

DW

Why do you wait til someone is dying to visit them?

Isn't that a good question?  I think it's to relieve the guilt on the part of the visitor, not anything for the patient.  My last post was Wednesday.  Thursday, both of his daughter, son, his wife and 3 of 4 kids came to visit.  My sister, her hubby, my brother, his wive and 2 kids came.  It was a complete total zoo.....and NOT what he needed that day.

But I can't deny them.  I can't tell them this is not a good time.  So I let groups of 4 in at a time.  UGH!

His son, the PharmD - the guy who has a doctorate in pharmacology, acted like I didn't exist.  Seriously!  He told his dad that he needed to have the defibrillator implanted.  "That's what's best for you, dad."  And he has NOT seen is father in 2 years!  Yep, I just wanted to spit nails, but I kept my mouth shut and smiled.

His daughter did her usual drama thing, "oh daddy, oh daddy, you have to promise me you are going to get well.  You have to - for me!"

Enough said about them?

The dynamics were interesting to watch.  His family was very dramatic, sad, acting like they were at death's door or a funeral.  My siblings just talked to him like it was a normal day.  Told them things they were doing or working on.  Had a very interactive conversation with him as though we were home, sitting in our living room.

That afternoon, he told his docs that he did not want the life vest and he did not want the implant.  We had done some research.  With the implant, you cannot use a cell phone, iPad, ear buds within 6" of the implant.  He uses earbuds all the time and loves to rest his iPad on his chest to watch movies (due to his poor vision).  We talked about it.  I told him the choice was his.  I don't know what I would do if it were me and I told him that.  He made the decision and while I'm not sure I agree 100%, I have to support his choice.

I suppose when it's your heart and someone tells you the vessels are 100% blocked, you have a big enough scare without considering the options for surgery.  Would his kidneys survive? Would his heart survive?  It can be minor, but it can also turn into a major operation.  He has opted not to do it.  And with that decisions, there just isn't anything else they can do for him.  So he was discharged home yesterday under hospice care.

The discharge process took from 10 am to 2 pm.  Mostly waiting for one department or another to come and have him sign their set of papers.  We were home by 4 pm and hospice came.  They had an intake person who was here asking questions until 6.  Then an RN came and did her complete evaluation and didn't leave until 8 pm.  After that I still had to run to the drug store and buy a pulse oximeter.  I had no idea that they cost $65!!!  And then go get a few groceries.  I got home at 9:15 pm and then had to deal with the pups.

All night long they whined and whimpered.  They wanted in bed with him.  I have told him for years that he cannot let them sleep with him in case something like this happens.  Well, he never listened to me.  After a night with very little sleep, I wasn't in a good mood this morning.  His brother is here (lives about 800 miles away) and staying for a few days.  The 3 of us came up with a plan that the pups will go home with the brother.  Hubby will get himself well enough to take care of them and we'll go get them.  That will give me some relief because I told both of them that there's no way I can care for the dogs and for him.

I know it will depress him something terrible and he will miss them horribly.  But one has to look at the overall situation.  He is a "fall risk".  We now have oxygen lines throughout the bedroom.  He does not need to be getting up in the middle of the night to tend to the dogs in his condition.  We tried having them sleep in my room last night and they just whined for him.  Literally whined all night long.

I'm letting his brother help him this morning while I take a bit of a break from it all.  I'm just so exhausted that I can barely function.  Health wise....he had a bad night.  His oxygen level is good, but his heart is beating about 112 and that is making him hot.  We have the AC set to 70 and I'm wearing a jacket (it's about 95 outside!).  We asked hospice for anti-anxiety drugs and pain meds.  I don't know if they are coming back today, or if it will be Monday.  The intake people didn't know.

I'm taking this one step at a time.  Not sure what else you can do.  I don't like the idea of hospice staff coming and going.  It feels like an intrusion into our life.  I'm a pretty private person.  I don't know how I feel about people coming when there is a "death call".  He needs to see his family and his friends.....I just wish they would come on a regular basis.

Today, I'm puttying and painting the slat wall in his room.  Then I will put up shelves.  For all the medical supplies they are bringing in.  So I should back up.  Thursday night, 2 of my sisters came over and we gutted his room.  Replicated what he had in there out in the garage.  He has a 3D printer and does a lot of electronics.  We had to.  With hospice staff and oxygen....there just had to be more space.  That left a slat board wall empty.  Today I will get that set up and then we have to move his computer and all those components to another table.  I can remove a huge table and get a recliner in the corner as he's not comfortable in his bed.

It's an interesting concept that life goes on when death is in the room.  Will he improve?  No idea.  He could go like this for a few years.  He could die today.  But the rest of life just keeps on going on.  I will try to update more often because keeping notes is good therapy for me - and it gives all of us a record of what the last days are like.

DW

100% blockage of heart

The actual words the doctor used were "100% blockage of natural vessels".  What are "natural vessels"?  They are the veins in your heart that you are born with.  That is what his angiogram showed.  The 3 bypass veins have some blockage.  They are too fragile to put a stint in.  In order to clean out the plaque, they would have to go in with a DRILL and literally drill out the plaque.  Instead they are going to use drug therapy to try and increase the blood flow in his heart.

Which is at 30%.  So during the angiogram they were not able to stint anything.

He probably had another heart attack around 7 pm yesterday.  I had come home.  He was resting when I left.  I cannot drive at night.  It is 3 am.  I cannot sleep.  I have a bag packed to go and stay.  I swore I would never do that again.  But I will.

Is he dying?  This time?  Has he died and they haven't called me yet?  It is nearly impossible to keep from having panic.  I honestly do not want him to go just yet.  We had such a wonderful time overall on this last trip.  But I don't want him to suffer and with that much blockage, how can he not?

A little before 7 pm last night I called him.  I face-timed him as I wanted him to see is beloved chihuahuas.  He said, "can I call you back? I'm having a really bad time right now and I have 8 people in here with me."

So I sat here for 45 minutes trying to decide if I should drive back or not.  An hour drive.  I kept waiting thinking he would call back. He didn't.  I called my sister.  I packed a bag to go and just stay. After 45 minutes, I called again.  He answered and turned on face time.  He said he thought he had gotten over heated and that brought on severe chest pain.  They brought in a fan, re-hooked up his nitro drip and were adjusting meds.  He had gotten sick to his stomach.  But he was better.  He did not want me to come up.  He wanted me to get a good nights sleep.  And honestly, I was so completely, utterly exhausted I promised him I'd just go to bed.  Which I did.

And now it's 3 am and I'm wide awake.   And can think.  Was that another heart attack?  More damage?  How can he possibly survive this?

His brother is driving about 900 miles to come see him.  I have called his daughter who has pancreatitis and just got out of the ER and isn't well enough to drive an hour to come see him.  She has called her brother who is estranged from his dad at the moment.  Perhaps this will remedy that?  I really can't worry about that dynamic at the moment.

30% heart flow.  35% kidney function before they injected him with dye (they will run another kidney function test later today), 100% blockage of his natural veins.  Partial blockage of his bypasses.  My life will change one way or the other.

I know that I have to stay positive around him.  So yesterday afternoon we sat and planned our next camping trip.  For late October.  I told him he should be all well by then.  We decided where we want to go - places he wants to see.  I called to make reservations at a site we had heard about and he was so happy that I was able to get us in (sometimes you need to book a year in advance for these spots).  I realize that I may have to cancel, but it kept him motivated yesterday.  I have learned that you need a goal in life to keep you going.  I never dreamed that a camping spot would be a "goal"!

I have moments when I go completely numb.  I can't process anything.  Usually when the doctor is giving us more information.  I know that's denial.  Pure and simple.  I have been telling everyone that he will be fine.  When I woke up I realized that he won't.  It's time to tell people to come say their good byes and if he somehow survives this time, they can come say them again.  At this very moment I don't think I have the emotional and physical strength it will take me to get through today.....but I also know that it will come from somewhere.  I'm leaving as soon as it gets light outside.

There are moments when I go through the entire house in my head, rearrange everything so we can get a hospital bed, oxygen tank, etc. in his room.  My neighbors are really young and have offered to help.  I will take them up on that one when the time comes.  It's not "if the time comes", but rather "when the time comes."  If he even gets to come home.

How many more heart attacks can his body withstand?  I don't think there is an answer to that.  Yet it's one of the zillion questions you ask yourself at this very moment.  We say goodbye to each other every time I leave the room.  I wonder if he will still be there when I come back.

This hospital has been amazing.  The staff is incredible.  They are in his room every 10 minutes if not more often.  We've never experienced that.  His every need is being met.  The bed works!  All of the machines work.  None of our past problems with hospital stays.  We have even joked about it.  But it is a really nice thing when you don't have to be dealing with equipment failure.  When he had his spinal fusion surgery,  he would call me at home to call the nurse's station because his call button wouldn't work.  At this hospital, I already trust them to be there checking on him every 10 minutes.  He knows they will be back.  That definitely relieves a level of anxiety for both of us.

When this moment arrives, everything else in life stops.  I literally have no appetite.  I put my phone on do not disturb when I am with him.  I am basically writing this so I don't forget.  You cannot stop the "what-if's".  They swirl around in your brain non-stop.  But you simply don't answer them.  They just hang there.  Then you tell yourself and him and everyone around you that we just take this one step at a time.  Get him to ER.  Get him to a cardiac hospital.  Get the angiogram done and see what the results are.  Get the new medications in him and see if he has an allergic reaction, see how his kidneys handle them, see if he has more pain.  Wait for the next suggestion from the doctor.

After his angiogram yesterday, the surgeon said, "we do not know where the heart attack is coming from."  To me this meant that there is no single spot of blockage, nothing they can directly track the heart attack to.  But with 100% blockage I'm thinking that it came from everywhere.  There is no single spot.....it's his heart stopping.  With 30% blood flow, oxygen is not getting to his brain.  Is a stroke next?

Then I remind myself that I cannot do the "what-if" game.  We simply take this one moment at a time.  Today I will start calling family and tell them to come visit.  That's the next step.  Saying goodbye when you don't know if it's goodbye.  Really hard to do.

DW

He had a heart attack this morning.

It was major.  I woke up about 5:30 am and he was coughing so hard I thought he was vomiting.  I went in to check on him and he said, "I think you are going to have to take me to the hospital."  I said to let me get dressed.  When I went back he had tried to get up to put his shoes on and he couldn't and said I needed to call 911.  Which I did.

They took him to the local ER and I was right behind them.  They did a heart enzyme test called torponin.  I had never heard of it.  Normal is .02 and he was at an 8.  By 2 pm that had gone up to 81 and it will continue to rise for 24 -26 hours after the heart attack.

The local hospital wanted to transfer him by ambulance to a facility about an hour away that has a cardiac unit.  He did not want to go.  He wanted to come home and start palliative care.  He had an excellent physician who told him that he could do that, but he would surely die.  He thought that it could be something quite simple like just getting a stint and he could be back home in 2-3 days and not suffer.

So off he went in the ambulance.  I'm glad he agreed.  Nothing worse than watching the person you love suffering.

I came home, gathered a few things and one of my sisters rode up with me while the other one followed in her car.  Incredible sisters who drop everything at a phone call!

They did tests all day long.  Excellent care team - I'm so impressed.  They worked first to get him comfortable, breathing with no struggle and as stable as possible.  3 or 4 EKGs, a heart ultrasound, so many labs I can't count them.  They need to do an angiogram.  That's the test where they run dye through his heart to see where the blockage is.  The dye is extremely hard on kidneys and can cause them to fail.  So they decided to hydrate him overnight with iv fluids and do the angiogram in the morning.

We had rounds of discussions about this Humulin RU 500.  I was advocating for him every second of the way.  I had grabbed his and took it with me.  At first they were going to convert the 100 and administer that.  I told them about past problem we've had with that.  True to form, the hospital pharmacy does not stock RU500.  So finally it was agreed that he could use his own, but they will inject it and keep it in their pharmacy.  I'm fine with that!  I think the clincher was when I told the cardiac MD that he had crashed on the operating table during his spinal fusion surgery.....they decided I was dead serious and knew what I was talking about.

Everyone was pleased and impressed with my spreadsheet of every lab he has had done since 2006.  They couldn't believe it.  I also had lists of all of his medications, his allergies, his medical history with dates.....I doubt they've ever had a patient so prepared.  But I have learned that if you present all that - they know that you know what's going on and they pretty much have to be honest and up front.

And I made him be honest about his marijuana edibles.

Things are changing in the medical world.  They will honor his DNR.  So if he has a major heart attack, they will not put him on a ventilator, etc, trying to force him to stay alive.

And I stayed true to my promise after the last hospitalization.  I drove the hour back home and will spend the night here.  I will go back tomorrow for the angiogram.....then I will not be going back every day.  I just can't.  I am 9 years older than when he had his open heart surgery.  I now know how important it is that I take care of myself.

If you read my last post, you know that we were expecting something like this to happen.  Mentally, we were ready.  There was no panic.  We just went through the drill of getting things he might need while in the hospital, making sure the pups were taken care of, taking things that I might need for the day, grabbing the RU500 and needles.  We had just talked yesterday morning about his symptoms and how close I thought he was to having a heart attack.

He is not stable tonight.  He could have another heart attack overnight.  We are both ok with whatever happens.  I told him how much I will miss him.  He told me things that he wants done.  No matter what happens, it will be ok.

I'm going to get a good night's sleep so I can face tomorrow.

DW

I want to go dancing.....

Managing wrote:

What really sucks is that no matter how many things you do to keep yourself busy you are still kind of forced to be alone as the spouse of a chronically ill person. I want so badly to go dancing with a man. To go on little adventures together instead of just sitting in the house with a blaring TV in order be with him. . . and him dozing in and out of sleep anyway. I am very lonely. Friends just don't fill the spouse gap. I think I will always be mad at him for not caring enough about my quality of life to even TRY to take care of his health so he can do things with me. He has given up on life. And in doing so, because I will not go the route of having an affair in order to have some of that which I miss so badly, he has made it so my life is now relegated to a sad and depressing and weird home life. WAY more sedentary then if I were alone or with a spouse who even just cared to TRY to consider somebody else beside himself.

I get this.  More than anyone can imagine.  I used to do ballroom dancing.  I want nothing more than to go dancing.  But it's not going to happen.

Being a caregiver is an extremely lonely task.  Not only do friends not fill the spouse gap, they often don't get it.  Especially if the spouse is capable of putting on a good front for a short period of time.

I have my sisters.  They get it.  They totally understand.  But I can't go dancing with them!  LOL!

Yes, he has given up on life.  But I refuse to.  I am fighting tooth and nail and refuse to go down with this sinking ship!!!  We are camping.  I am forcing him to get out and go and yes, it may kill me before it kills him, but we are doing it!

We just got back from a 3 week trip to the ocean.  I LOVED it!  I took long walks on the beach.  I hunted for rocks and driftwood.  I sat and watched the waves.  I went to little boutiques and gift shops in beach communities.

He sat in the camper and watched movies.  He was perfectly content.

HOWEVER - it was not utopia by any means.  He has had the worst case of ketoacidosis and that sweet, sickening acetone body order just about did me in confined with him in the vehicle driving home!  I kept suggesting that he drink more water.  He definitely needed to hydrate.  I almost choked at night with the smell in the camper.  I'd crack my window open and breathe in the fresh night air.  If you have never experienced this smell - trust me, you don't want to.

He had more than a few lows.  Too out of it to get his glucose tabs.

He would sit up at night because his back hurt.  Of course - in a camper - every move he rocked the boat!!!

He popped nitroglycerin tablets like they were candy.  He had such problems with any type of altitude.  At one point I said that we were lower than where we live and he said we had been lower and he couldn't adjust to getting back to his normal altitude.

So - here's my take on all of this.

His BUN is going up.  That means that his heart is not pumping enough blood through his kidneys in order for his kidneys to cleanse the blood.   Sort of a catch 22 situation.

He has developed a nasty cough.  Congestive Heart Failure.  Because his heart is not pumping enough blood and it is backing up in his lungs causing fluid.

I am watching for all of the tell tale signs of a heart attack - I think he is setting himself up for one.

We have been home for 36 hours and he is still unable to adjust to the altitude - which isn't much!

On this trip, he could not see.  He could not help me with traffic. So much of the time he said all he could see were blobs.  A forest looked like blobs of green.

He is losing his hearing.  He got angry at everything (dementia?) and I had to repeat over and over what we were doing, what our schedule was, what was next.

I think that's what bothers me the most.  We are planning a long trip this fall and he had told me he had made reservations at this one place I really wanted to stay.  A few days later, I asked him to verify our check in date and he said he didn't make the reservations there.  I told him the he did.  He kept telling me that he didn't.  I finally got ahold of the place, and yes, we had reservations.  They emailed me the confirmation.  When I showed it to him, he just said, "ok".  Like he forgot the entire conversation we had about it.  Well if that doesn't drive you mad, I'm not sure what will!

This is NOT my disease.  It's NOT your disease!  YOUR life is NOT ending and there is no reason for any of us to live like it is.  Get out there and do the things you love to do.  Ok, maybe we can't go dancing with our spouse....but there is still tons that can be done.

The thing I have had to learn is that he is going to die whether I am here or not.  He will go into a coma, pass out, have a seizure - whether I am here or not.  Should I just sit here and wait for it to happen?  Why?

And when it does happen (and it will) I will have my moments of doubt - I will regret that I was not here beside him.  But I hope I'm smart enough to remind myself that this never has been and never will be my disease.  He has chosen to be non-compliant.  That was not my choice.  I know the consequences of his decision.  He has a very solid DNR that his physicians have all signed off on so there is no question about the path that needs to be taken.

So, to "Managing" - get out there!  It won't be with your spouse, but you won't be sitting at home waiting for death to knock on your door.  I can't fathom anything more depressing than that!  If nothing else, dig a hole in the ground and plant a flower. Or buy a pot and put one in it.  Then add another....and another....and soon, you'll find that when you go camping for 3 weeks you have way too much gardening to tend to when you get home!  Guess who that happened to?  LOL!

Here's hoping you all had a marvelous July 4th!

DW

Day in and day out - life goes on

Have I become numb to living with diabetes?  And is that just ok?  Sometimes I wonder!  My sister was here yesterday and our truck was done at the shop.  He comes out and asks me if I want to take him to get it.  I said, "when we're done with our visit."  I thought my tone was pleasant - I was enjoying my sister's company.  He immediately turned snarky and said, "you don't have to if you don't want to." and walked out the door to the mail box.

I looked at my sister with nothing but sorry in my eyes.  Sorrow that she had to see him get in a snit because I didn't jump at his command!  But she knows - she gets it.  He came back in the house and I said, "would it be ok if I take my sister to lunch, then home, and when I get back we can go get the truck?"  and he said "whatever" in his snarky voice and stomped off to his room.

Such a 10-year-old snit - not getting what he wanted the moment he wanted it.

Was he in a bit of a sugar low?

Not too long ago, his glucose went down to 50.  We were out camping.  It was 2:30 am.  I woke up to him falling back onto his bed.  I asked what was wrong.  He told me his sugar was down to 50 and asked if I had tootsie rolls.  Of course, he already knew that I did - that was his way of telling me he wanted me to get them for him.  I said, "where are your glucose tabs?"  He said, "in the truck".  So of course I got up and got him the tootsie rolls and saw that he had just ate a banana.

And then I was awake the rest of the night and yep, he went right back to sleep.  I was awake wondering in my head- what if I hadn't gone to the grocery just that morning and brought back bananas and tootsie rolls along with the other groceries.  What if I didn't have anything sweet at all in the travel trailer?  I would have had to put my clothes on, go out to the truck, find his glucose tabs?  Why couldn't he pre-plan for this?  Why hadn't he brought his glucose tabs back to the trailer?  WHAT IS WRONG WITH HIM???

And I keep going back to the single thought - not my disease.  But I doubt he will EVER take care of himself.

Is he getting a touch of dementia.  Diabetics with this late stage kidney failure can do that.  Is he getting a touch of alzheimers?  That can happen as well.  What are the signs and symptoms that I need to be looking for?

His gastroparentesis continues to develop.  His stomach has times when it is so bloated an brick hard.

His upper legs are "blown up" and brick hard.  I googled that.  Lipohypertrophy.  Don't you just love adding words to your vocabulary?  He's switched to injecting in his stomach.  2 times a day, 365 days per year, 14 years.....10220 injections.  Something was bound to happen.

And I know that he is a prime candidate for a heart attack or stroke.  In my last post - 2 months ago, he had had his labs.  His doc called and wanted him to have an ultrasound done because his BUN is high.  36.  But remember, it's been as high as 63 in the past.  The doc said that there might be a tumor in his kidney.  So he scheduled an ultrasound and that doc told him that he needed a CT scan first.  Hubby emailed his nephrologist thinking this new doc, a subcontractor to our insurance company, might be trying to rip off our insurance company with unnecessary tests.  He's not heard back from the nephrologist.

I'm not pressing this issue.  I doubt there's a tumor anywhere.  It's just an elimination step in the process.  They need to eliminate that possibility before moving on.  My research shows me that you can also have an increase in your BUN if your heart is not working.  It's not pumping enough blood through the kidneys to filter (clean) the blood.  

It's almost a catch 22 situation.  The heart doesn't pump enough blood through the kidneys to filter it.  So the toxins (protein) stay in the blood and accumulate to a higher level.  The damaged kidneys already are having trouble filtering the blood and now the heart isn't pumping hard enough to allow the kidneys to do their job.

But what would they do for his heart?  When he had his bypass surgery 9 years ago, they wanted to do 5 bypasses and could not find enough healthy veins and only did 3.  He didn't grow new healthy veins in the past 9 years with his A1c going from 9 to 12 and back down to 8.  I doubt they could do bypass surgery and he's said he will never go through that again.  I'm pretty sure his kidneys would fail since they failed with his last surgery.  I'm not sure his kidney function would allow them to do surgery at this point.

So why get the ultrasound done?  And I think that's where he's at with everything.  He simply has to know his prognosis....or be in such intense denial that it's a protective denial.

Those of us as family members, as caregivers, are the ones who truly suffer the most.  It's hard to deny anything when your spouse is having a sugar crash and needs candy, glucose tabs...whatever.  You just go into an automatic pilot mode and do what's necessary and then spend the rest of the night wide awake while they get their sleep!  Almost funny!  But not quite....

I know it's getting close to the end for him.  On the other hand, I could easily go first.  We have been camping and are planning more trips.  It keeps us busy.  Hopefully we are leaving in a week and will have a 3-week long adventure with some ocean time.  I find when we are camping, I take long afternoon naps.  I take long morning walks.  I enjoy nature.  I come home rested.  It's what I need at this phase of our lives.

DW

labs and kidney ultrasound

A lot of my posts here are just to keep a journal of what's going on.  His labs are declining.  The nephrologist called and wants to schedule an ultrasound of his kidneys as he thinks there might be a tumor.

My best guess - it's his heart.  Here's why I say that.

His last labs were 1/18.  Current labs were 4/13.

BUN jumped from 26 to 36.  Normal is 7 - 23.  It's been as high as 63 in the past!  It's the test for blood in the urine and normally means either there is something blocking the kidneys, you are exercising too much, or your heart is not pumping enough blood through the kidneys.

His A1c is 8.3

Microalbumin, ur, detection limit should be under 30.  His is 966.  But that's down form 2039.  Yes, you read that right!

Microalbumin/creatinine should be under 30.  It's 720.5.  Again, that's down from 2368 two years ago.

Protein, UA, ql should be negative, his is 2+.  But that's down from 3+.

I have been charting his labs since 11/16/04 on a spreadsheet on my laptop.  I wish the doctors would just sit and go back over where he's been in the past 14 years.  This BUN is actually pretty good.  For him.  But I also am more and more aware that he is now 8 years post bypass surgery and we should expect to see more heart issues popping up.  I'm also aware that he is taking his nitroglycerin again.....and he has not told any of his doctors that he's doing that!

Most days I just shake my head and forge ahead!  His GFR is down to 40%, but of course it's been down to 0 in the past.    While 40% kidney function is pretty good, the other labs are an indication that they (kidneys) are not filtering the waste properly.

Who knew I'd become such a pro at reading labs over the years?  I cringe when I ask someone else what their GFR is and they have no clue what I'm talking about!  Perhaps all of us should take heed to and pay better attention to our labs and get to know what they mean.  It sure can't hurt!

DW

Going blind

He's refusing to go see the eye doctor.

For awhile, he just had "floaters" clouding his vision.

Then it was florescent blue spots.

Now, there are flashes of bright white light and it happens when his eyes are closed.

From what I can see from internet research, his retinas are detaching.

There are thing that could be done to help him.

He's refusing to go to the doctor.....for anything.

He cannot see anything from sunrise til about 11 am, or from about 2:30 pm til sunset.  He says it just looks blank in front of him, but he can see some around the edges.  He thinks it the direction of the sun.

I asked him yesterday what his plan was for when he goes blind.  He said he would just walk into the sunset.  Jokingly, I asked him how he would know where the sun was if he couldn't see it.  He said he'd walk towards the heat.

Maybe it's good that he can joke about this.

But I was quite serious.  I have no idea what we will do and I think we need a plan.  Obviously he doesn't.

He said he was up almost all night last night with the flashes.  I don't know how he can go so long with so little sleep.

We are having a spring/winter/spring/winter mix of weather.  When it's warm, I'm outside working in the yard and sometimes I think I'm trying to kill myself.  I was so tired last night I just dropped into bed and fell sound asleep.  At least it is keeping my mind on something other than the prospect of him going blind.  And it's keeping me busy!

The blessing is that he's not blind yet.

DW

Interesting things about traveling

He had a very hard time adjusting to altitude changes.  I thought that was interesting.  The higher the altitude, the more nitroglycerin he took and the more difficulty he had breathing.   I don't think either of us were prepared for that.

Temperature changes affected him as well.  If he got cold, he put on gloves....and I'd be so hot I'd have the AC on blast!

Almost a comedy of errors.  He worried constantly about having enough insulin.  I reassured him that we were never more than 3 or 4 days from home and could start back any time he wanted.

We were gone almost a month.  I loved every moment of it.  Pretty sure he hated everything about it! LOL!!!  But coming home was a shocker to me.  I don't think he moved the first 4 days that we were back.  And even now, a couple of weeks later, he sits in his recliner nearly 24/7.

He got a new bed and while the mattress is great...he doesn't use it.  Says his hips hurt if he lays down too long.  I think that might be true with any mattress.

Sometimes I wonder if he is just waiting to die.  Nothing interests him.  Nothing motivates him.  As far as I can tell, he has stopped doing anything that he enjoyed.  LED lights, 3D printing.  He is like a zombie just sitting there watching TV.

I reminded him that he had said he would go see the doctor about getting his cataracts removed.  He said, "I don't think I'm going.  I might as well just go blind."  I just looked at him and said, "who is going to take care of you?"  Of course, I will....but I don't want him thinking that!  If there's a chance surgery will help, he needs to do the surgery.  (Remember, he has had cornea transplants so the first issue is finding someone who would even agree to do the cataract surgery!)

We are plodding along.  One day at a time.  He is getting a little more involved in life here at home and I've hit the trail full blaze.  Lots of activities with my friends and prepping the yard for spring and all the work that comes with setting in new plants.  And I decided to rip out the back corner to have a spot to park our little camper.  Maybe I keep busy so I don't have time to stop and think about his disease.  Maybe it's a form of denial.  Denial of what the future holds more than denial about the disease I think.

I'm off for a getaway weekend tomorrow with a bunch of gal pals.  Looking forward to it!

DW

Day 23 of traveling with Diabetes.

There have been great days, good days, bad days and horribly awful days.  Just the same as when we are at home.  But I am living in a 17' travel trailer and all the utter nastiness of diabetes is in my face 24/7.  Thankfully, I can go outside a lot as we are in southern Arizona and the weather has been amazing!

We extended our time here by 10 days.  I am having so much fun visiting with my sister and exploring the area.  My brother-in-law comes by every day to have a chat with hubby.  They have their RV about a mile from the "resort" we are staying in.

I suppose we are not really on the road as we set up and have stayed put the entire time.  Hubby is running low on insulin as we hadn't planned to stay quite this long, so we will be heading back home this weekend.

Yesterday, I saw that he had his nitroglycerin bottle out.  I asked if he had been taking them.  He said "no".  I said, "when is the last time you had one?"  He said, "a week ago".  Sigh!  Well no, not really "sigh".  I have done enough research to know that his high sugar level means that the nerve endings in his heart have to be impacted.  It's also been 9 years since he had his triple bypass surgery and back then the surgeon said that he couldn't find enough good blood vessels to do the 5 bypasses he had wanted to do.

So the reality of it is that he is at a high risk to have a heart attack.  And I am well aware of that.

The second issue was a conversation we had late last night.  We had been out to dinner with my sis and brother-in-law and as we were driving home, he said that he hoped I didn't mind doing all the driving.  Jokingly, I said, "what?  and have a blind man drive me around???"  LOL!  To which he replied that he was grateful I was willing to do all the driving and he realized that he was going blind and that it probably wouldn't be long before he couldn't see a thing.

And yes, I have known for some time that he is slowly going blind.  It must just be horrible being the diabetic that he is.  I would be lashing out in anger 24/7 at the things that were happening to my body.  Yet at the same time, he has done absolutely nothing to prevent any of this.  And he has to have known this was his future.

Some days I worry about what will happen when he goes completely blind.  I already know that he is not going to go to school for the blind or even try to manage his way around.  I pretty much imagine he will simply give up.  Yet I will have to keep going.  Other women have cared for blind spouses - it will just be something we adjust and adapt to.

I tell myself that this new adventure will either kill him, or make him stronger.  Ha!  There have been moments when I think it will kill me!  But overall....it has been an adventure.  We have laughed at ourselves quite a bit.  Dumping the sewer is not something I want to do.  But if he can't see......and trust me, there are plenty of jokes to follow that line!

This is our first time in a travel trailer.  We are learning so much.  Brought the wrong things, too much and then not enough of other items.  He had a complete utter melt down one day in front of the people parked next to us.  I was mortified.  But I held my head high and just kept on going.  What else can you do?  He threatened once to take the truck and leave me here.  I just ignored his comment figuring once again that his sugars were out of whack!  But in my head I was thinking I'd just have my brother-in-law tow me home.

Personally, I love being outdoors.  This has been so refreshing.  There is something about the cool morning air that gets my blood flowing.  And the temps here have been perfect.  Upper 70s in the day, upper 50s at night.  We are surrounded by hundreds of Canadians who no longer feel safe going into Mexico for the winter.  Yet they can be here and cross the border any time to get cheaper meds and services.  Yep, I forgot my passport!  LOL!

It is nice on one hand to have such a complete, total break from our every day life and in ways I'm dreading going back next week.  On the other hand, adjusting to live in a travel trailer with "him" has been a challenge.  I think it's been worth it and I hope we can do this again sometime soon.  If nothing else, I am making sure that I can handle driving, towing, winterizing, dewinterizing....everything that one has to do to have a getaway vehicle.   And this summer I plan to join my sis and her hubby on their weekend camping adventures.  It will give me some much needed mini retreats to look forward to.

DW

Why?

why do diabetics get in such snits when they have a sugar crash?

Why don’t diabetics eat on schedule?

Why don’t they test regularly?

Why don’t they take better care of themselves?

Why does a diabetic expect their spouse to take care of them?

If you know you have sugar crashes, why don’t you carry your glucose tabs in your pocket?

Why do you expect someone else to go get them for you?

Why do you think the world revolves around you, when it doesn’t?

Why do you have to get pissed off in public and show your ugliest version of yourself when you are crashing?

Why do you take it out on your spouse?

Why can’t you remember exactly how ugly you just acted?

Why do you get so pissed off just because your spouse is too worn out, too exhausted to care?

Why can’t you comprehend that your ugliness is what wears your spouse out?

Why do you seem to think that getting nasty and yelling will do anything at all?

Why can’t you think?

Why can’t you have an ounce of logic or reason?

Why do you expect others to tolerate such horrid behavior?

How long do you think anyone can love you when you are being so ugly?

WHY?

On the road with diabetes

well, we are now in our 4th day of this adventure and I must say...what a trip!!

First night in our tiny travel trailer it was 9 degrees outside!  Second night we joined up with my sis and her hubby was so much help!  But we boondocked for the next 2 nights.  Charged the batteries during the day with a generator in order to run his c-pap machine at night.

I have not slept in the same room with him in years and here we are inside a 17’ x 8’ trailer!!!  Who is going to kill who first???  LOL!!

Tonight we are at an RV resort in Yuma AZ.  Gorgeous property.  We have the tiniest trailer nestled between huge RVs.  Interesting experience.

First night out, he forgot to take his evening meds.  He went to the bathroom 12 times that night.
He has had numerous melt downs, I just walk away.  He twisted his knee real bad.  I offered to find an ER.  He said no.  I said I didn’t want to hear about his knee.

Our biggest fights have been over the pups.  He doesn’t want to walk them or keep them on a leash.  I told him that he does, or we get rid of them.  So far, doing better.

I love driving, watching the scenery, seeing the road go past us.  My brother in law has lung cancer.  He has a 5 year death penalty.  My sis is thrilled to have us here.  We have already spent way too much time together.  She is obsessed with getting 10,000steps in a day.  I’ve kept up for 2days now, but my legs are aching bad tonight and I just want to tell her I need tomorrow off.  Sure hoping I wake up ready to go.

If nothing else, I think this tripmight get him on some kind of regular schedule.  At least I hope it does.

And being with my sis....who faces certain widowhood, makes me appreciate my life a bit more.

There is always someone out there who has it a little worse than you.  Just find them.  I promise it will help you more than you know.

DW

Pharmacies....hahaha!

Hubby normally has his prescriptions mailed to him, but we are taking a little trip and wanted to make sure he got them, so had them filled at the HMO pharmacy....45 miles away.  They called and said they were in so we made the trip today.

His Humulin R U-500 was not in.  He has gotten the vial and syringes for years.  Today, they told him he had to switch to the Qwik-set pen.  I was in the car and he called me.  I went in, and when I asked why he couldn't get the vial, the gal said, "we can no longer get it."

I asked, "why not?"  And she said, "they are no longer manufacturing it."

I had already checked Eli Lilly on my iPhone and showed her the website and said, "they are still manufacturing it."  To which she replied, "it is no longer on our formulary."

So I said, "I checked your formulary in November and it was on the 2018 formulary.  You cannot change your formulary mid year and it is the ONLY reason with have stayed with this HMO."

I had her in a corner and she said, "I'll let you talk to the pharmacist."  And of course he started in with the same line of conversation, but when I got to the part that the could not change their formulary, I saw a look in his eyes and I knew immediately that he knew I was right!

He made 1 phone call and the vial will be in tomorrow.

But it means another 90 mile round trip to the pharmacy.

I suggested to Hubby that we make a visit to his endocrinologist when we get home (heading out for about 3 weeks on Monday) and discuss the pen with her.  It sounds like the HMO will be taking the vial off their formulary in 2019.

Now, why wouldn't he want the pen?  Well, his dad used to have his insulin administered by a pen.  It takes much longer to go in, and even I'm smart enough to realize that I wouldn't want a needle sticking down in my skin a nano second longer than necessary.

Why would anyone???  What is wrong with the pharmaceutical industry that they want to inflict pain and suffering on anyone???

He currently uses a 31G needle....one of the thinest there is.  The Qwikset pen comes standard with a 29G...a little bigger.  But he said the main thing is the time the needle remains under the skin and that is how the pen pumps the insulin out.  I'll take his word for that (as I sit here and cringe at the very thought of a needle going into me....do not even try to tell me that you get used to it!!!)  I'm the queen of needle phobia - just ask anyone!

When hubby had his open heart surgery, my brother insisted on going in with me the first time I saw him after the surgery.  My brother was certain that I would pass out from the sight of all the needles, IVs, etc.  I didn't.  But I did go weak in the knees and was ever so grateful that my brother was by my side!  To this day I can barely stand to have blood drawn.  It's just a thing.  So I can't fathom giving myself a shot every day and it it hurt for one second, I wouldn't do it!  So in this instance, I will come to hubby's defense!

But you have to wonder.....does the pharmacy think they can just switch this for anyone?  What if I hadn't been there to make the statements I did?  What gives the pharmacy staff the right to blatantly lie to me....that it wasn't being manufactured....that it wasn't on their formulary???  Do they think everyone who walks through the door is a moronic idiot who will just do exactly what they say?

This is January.  They have to provide the vials for 11 more months!  They HAVE to, by law, notify him in writing that the product is no longer available.  And they cannot change the formulary mid year.  Did you know that???

Years ago I managed a medical billing unit for a huge home health care agency.  That experience has paid off 100 times in my lifetime.   I get that the HMO wants to "save" money, or keep people from dosing incorrectly.  But this is a guy who has been using a vial and syringes for years.  Not someone who just started.  And I will never understand blatantly lying to a customer.  Simply beyond my comprehension!

So tomorrow, we will get up at the butt crack of dawn and drive 90 miles round trip.  All I can say is that a VIAL of Humulin r-U500 better be there!  LOL!!!

DW

Starting this year with a bang!!!

I never make resolutions because I can't keep them.  BUT.....I've decided that we are going to make a few changes around here!  I think that I forget that I AM NOT THE ONE WHO HAS DIABETES!  (OK, would you please come stamp that across my forehead so that every time I look in the mirror I get reminded???)  LOL!!!  This is HIS disease, not mine.  And I/we do have a life!

We have been saving our pennies and it came down to the big decision.  Do we remodel the kitchen or do we buy a small used travel trailer and join one of my sisters and her hubby on some of their adventures?

Hmmmm....  he wanted the kitchen, I wanted the trailer.  And once we talked out all the pros and cons, even with his diabetes, we opted for the trailer.  Why?  because it will kill him or get him into better shape and all the kitchen remodel would do is make him want to cook more and eat more.  HA!    So his diabetes was a major input factor in my decision to go on the road.  Can't stock too much in it. Going to have to grill most everything.  Might force a healthier lifestyle when we are gone?

We are planning to join my sis in a couple weeks for a few days.  Jump in head first....let my bro-in-law show us the ropes.  We have fairly good health insurance which should cover any emergency anywhere.  And we can always come home if things get too bad.  Yep, I know, I will do most of the schlepping, cleaning, etc.  But I do have a folding camping toilet from years ago and I might have to get one of those external pop-up tents for him to use.  LOLOL!!!

If nothing else, it has already added a little spark in him.  This is "our baby" and he wanted to go "baby shopping" immediately.  I have a list of things for him to make with his 3D printer.  He gets to do anything with LED lighting and I'm working on the decor.  It's keeping my thoughts away from his limitations....and that's good!

Thank you for all your kind comments on my last post.  You can always email me at diabeteswife@yahoo.com, just know that I rarely check that email.

This one touched my heart:

I just read this whole post after writing my last comment and I'm drowning in tears. I didn't ever know there was anyone else out there with the exact same struggles as me. God bless you and thank you for sharing your journey so someone like me could feel less alone for even just a little while while reading your post.

My dear sweetheart...you are never alone!  There are tons and tons of us who are in the same shoes.  There have to be according to the statistics as to the number of people who have diabetes and the statistics on the number of people who are married.  But I think the problem is that very few of us dare to write the truth.  I could not begin to express myself if anyone knew who I was - thus the hidden identity of my blog.  I try hard to keep my identity secret for a couple of reasons.  I don't want my hubby to be embarrassed....and he would be.  I don't want my extended family and friends to know this much about my private life - it's none of their business.  Yet I do need to keep a journal of what I am going through....so I can remember parts of it and so I can just get it off my chest and not worry about it.

YOU ARE NOT ALONE!!!  My intent wasn't to make you cry at all, yet I get that.  Sometimes, just knowing that someone else is going through what you are going through helps so much.

And then there's the group of diabetics and professionals who will try to convince you that you have this disease and that because you are married to them, you have to take care of them, support them, and even be there to save them.  I have my biggest gripes ever with those people.  Get over it!  Don't even dare to try to guilt me into thinking that I have this disease when I'm perfectly healthy!!!

And there are those who think I'm some type of hardened criminal because I don't sympathize with them.  I do love my hubby.  I'm still here after 12 years of this.  I do support him, take care of him, even save him (read back about Feb, 2011 for that incident).  All I can say to them is "walk a mile in my shoes" before you judge me.

The biggest disservice the whole diabetic industry has done (and yes, it IS an industry) is to guilt spouses into thinking that they are responsible for the spouse that has this disease.  NO.  NO.  and NO!!!  If you even dare to think that, walk away from this blog right now!  LOL!!!  But I also think it's a cop out for the person who has diabetes....that they have someone who will take care of them so they can take a day off, have a night out, not worry so much and think that the other person will be there to take care of them if they happen to fall into a coma.

Sorry - not my job!!!

When my son died this last September....once again, I had this sensation that no one understood me.  Yet there are so many of us who outlive an adult child for a variety of reasons.  I think it automatically throws us into a new group, gives us a new identity..."she lost her child" - a title no one wants to hold, ever.  But we also have this identity we didn't ask for....."her husband has diabetes"...like it's a disease tossed upon us.  And when you are handed a new title, it's so hard to retain the person you were before that title was applied.  It's like how do you say, "I had 2 sons, now I have 1".....how do you change from being the mother of 2 to being the mother of 1?  Kind of impossible.

Hubby had an episode 2 nights ago.  When I woke up, he said, "I was at the door at 3 am getting ready to come wake you up and tell you to take me to ER.  But then I threw up and I was ok after that."  After much discussion, I almost think his symptoms sound like he was having some kind of minor heart attack.  We went through that in 2009 down in a rain forest in southern Mexico.  He is doing much of the very same thing.   So I put the thought out there and of course....he refuses to go see his doctor.  (But note, he was almost to the point of going to the ER!!!)

Do I sit here and panic over him having a heart attack?  Do I put on hold all our plans for this new camper?  NO!  Life goes on and if he drops dead along the way it won't be one iota difference than sitting here waiting for it to happen!  I think it's better to wait and deal with whatever happens when it happens than to sit home worrying and waiting for it to happen.

So I do believe that my motto for 2018 will be just that, "life goes on".  If I can survive the death of my son, I almost feel like I can survive anything!

And to "Managing"...we do need to have a whole conversation about sex with a diabetic.  Neuropathy is a horrible thing.  He doesn't even want to hold hands because it irritates him.  His skin has become extremely sensitive.  And I know he can't feel a thing anymore.  Yesterday, he couldn't feel the items that were in his pockets.  He can't "feel" me when he touches me and his skin is too sensitive for me to touch him.  Yep - that's what love is all about!  They say love is patient.  I think neuropathy takes it to a whole new level!  I promise we'll have that conversation some time down the line.  The good thing is that as you age, that sex drive does dwindle.  I'm grateful I'm not 20-something any more!

With that thought in mind (that I'm not 20-something any more) it's hat's-off to what I hope might be an adventuresome 2018!  Blessings to each of you.  I pray for strength for you that you will do whatever it takes to turn your life around so that you can be happy.  I pray for strength for you to sit down and write your own experiences and share them with the rest of us.  I pray for strength for you to know that you are not alone at all in this experience, and to understand just how hard it is to put yourself out there when so many others will misconstrue what you write and decide, even declare on their blogs, what a horrible person you are.

We only have this one life.  For some it is so much shorter than for others.  For some, it is so much worse than for others.  For me....I'm going to make the most of whatever I have!  Here's hoping you can and will do the same!

DW

Happy 2018!!!

We survived 2017.  Amazing!  If I had the energy I'd jump on the bed like the gal did in "The Holiday"  Speaking of which, we've had a very nice, quiet holiday.  I can't believe how fast 2017 flew by!  I can't believe that I've been keeping this blog since 2006.....12 years!

We've had a few issues the past month.  Something happened to the hardware in his back from the spinal fusion surgery and he had about 3 days of not moving at all.  It resolved itself - thank goodness!

He is still vomiting about every other night.  So he gets a good night's sleep and then is awake the next night.  Is it gastroparesis?  He seems to have all of the symptoms, but he's still refusing to go back to the doctor.  Says he's only going when they make him go to get his Rx refilled.

His daily glucose monitoring remains way too high.  He goes low in the mornings and does not take his full dose of insulin, then goes high in the afternoons so he delays dinner until bedtime.  He's in such a mixed up cycle, but there's not much I can say or do.  I've learned that much!  LOL!

Overall, it's been quiet and calm and I am ever so grateful for that.  I couldn't wish you anything better than a calm and quiet 2018!

DW

Calvinnme wrote:

Well, I'm a diabetic, not with nearly the problems your husband has - yet. Although I don't delude myself and say I'm normal as long as I take meds, I know the disease will progress, just hopefully more slowly. About his hunger, let me just say that many of us diabetics live in a "prison of hunger". It doesn't matter what he eats, his insulin by definition does not get used by his body effectively. So there he is, his blood awash in unusable insulin and sugar that will not go into the cells, so he might as well be eating cardboard. That is why he is so hungry. The thing is, and I'm sure you know this and he knows this too, is that weed makes you hungry. So he is just compounding the problem by using it. Maybe he is just in such a state that he would just rather check out mentally than anything else. It is a disease of hopelessness, since there really is no cure, just decline, no matter what the diabetic does. So I can imagine that nobody who has been through it as a caregiver ever on What's next?

Thanks for writing.  Yes, I understand the mechanics of insulin and the whys of his hunger.  Yes, I know the weed is giving him the munchies and making him hungry.  It doesn't make it right.  It doesn't make it easy to live with.

In some ways, I am lucky.  He's been around way longer than I ever anticipated.  :)  In other ways, being a first hand witness to the slow decline this disease causes in the body is horrifying.  The good thing is that it's making me want to be healthier!

My sis and I started a chair yoga class today.  Boy!  Did I feel it!  I realized just how out of shape I am.  You can walk every day and still not use the same muscles you use in yoga.  We also did some of the machines at the gym.  I'll probably be dead tomorrow.  Should I just say "goodbye" now?  ha ha!

So, I went to the grocery last Wednesday to stock up for Thanksgiving weekend.  On the spur of the moment, I bought a large bag of plain potato chips and a large bag of BBQ chips.  I thought with all the leftover turkey and ham - it would be good to have some chips to go with sandwiches.  I went to look for them tonight and they are both gone.  I asked him and yes, he had eaten them! ALL OF THEM!!!

There is no budgeting food in his mind.  No eating in moderation.  No "save it for tomorrow" - that's for sure.  But the bigger problem is that when I look for chips to go with my sandwich.....there's nothing to be found.  And that just pisses me off!

Do I actually have to hide the potato chips?  LOL!  I do have some empty storage bins in the garage.  Perhaps they will have to go in there for now!

I have taken every ounce of sugar and sweet out of the house.   I try to keep eggs in the refrigerator in case I need them for baking - that has become nearly impossible!  (Remember the day he fixed 6 eggs for breakfast?)

I am going to start back in on Weight Watchers.  I will be buying my own food, fixing my own meals.  I am praying that he keeps his hands off of the WW items.....but I have a feeling that's not going to happen.  It's funny because WW is rolling out a new plan next week and from what I've read, there will be more zero/free points food items.  What amazes me is that no one believes that every item you put in your mouth has calories.  Even if it's "free" - if you consume 3000 calories a day in "free" foods - you will gain weight!

I'm living with a guy who thinks everything is "free" food!  And that he can eat an entire bag of potato chips in one setting.  Or that he can continue to eat 3-4 drumsticks (ice cream) every single day.  So I'm done.

But let's rethink this for a moment.  He has the munchies.  He is hungry all the time.  Yet his stomach is not digesting the food.  The doctor gave him some anti-nausea pills which are keeping him from vomiting.  But the food is still sitting in his stomach undigested.  This is  called gastroparesis.

What are the complications?

Gastroparesis can make diabetes worse by making it more difficult to manage blood glucose. When food that has been delayed in the stomach finally enters the small intestine and is absorbed, blood glucose levels rise. 

If food stays too long in the stomach, it can cause problems like bacterial overgrowth because the food has fermented. Also, the food can harden into solid masses called bezoars that may cause nausea, vomiting, and obstruction in the stomach. Bezoars can be dangerous if they block the passage of food into the small intestine.

Well isn't that great news???  His glucose is going to get even more out of control.  And the bezoars? Heaven help him!

How to fix it?

Control glucose
Change diet

And the chances of that happening?  Ok, we already know that's not going to happen.

For me, it's an ongoing education to try to stay one step ahead of his symptoms, what's causing them, whether there's anything I can do to help him and if I should mention it to him.  But it doesn't consume my life.  An hour or 2 of research a week.  The rest of my days are spend living what I hope is a fairly normal life.  And now adding in the gym and a weight watchers diet with meal planning - I might just be so busy I forget all about his diabetes.  Until I hear him being sick.

To all the caregivers out there, whether it is diabetes of something else, my heart really does go out to you.  I truly know what you are going through.  I know there are tears and I know there can be great moments of joy with the one you love.  There are moments when you want to walk away and times when you feel guilty for having those very thoughts.  Periods of great anxiety and the same for being annoyed at the disease.  It's not easy.  Just take it one day at a time and when you can't do that, just take it one moment at a time.  Do things for yourself.  Take breaks.  Read a book, watch a movie, go for a walk, eat your own ice cream while sitting in the car at the park (yep, I've done that a couple of times!)  And pray.  Ask the Lord to bless you.  Don't wait for someone else to pray for you.  Just pray for yourself.  It does help!

Here's hoping that as your year winds to an end that there is peace in your life, joy in your heart and faith in yourself!

And to calvinnme, I will pray that your diabetes never gets as bad as what we're living with!

DW

What's next?

I often wonder "what's next" as I have never lived with a diabetic and most people who are at this stage in the progression of the disease simply don't write about it!  So today's post is going to be about the daily trials of living with this disease.....when you are the healthy one!

Yesterday, he fixed SIX eggs for breakfast!!!  Then he went to Burger King for lunch.  THEN....he order Chinese takeout for dinner!  I was gone most of the day and asked him what he'd eaten when I got home last night.  In my mind, a normal person doesn't eat that much food in a day!  He said he was hungry.

So what causes hunger at this point?  I know he has told me that he can't taste or smell anything.  And he doesn't eat like that every day....but he does eat a ton of food.....that he supposedly can't taste or smell.

He is up most nights sick to his stomach or with diarrhea.  The gastroenterologist has refused to see him until he stops eating/smoking marijuana for 3 months.  But I am assuming that the nerve endings in his stomach have stopped working, food doesn't get digested, and when it sits too long, it has to come up and get out one way or the other.

And I cannot talk to him about anything after 6 pm because that's when he starts eating his mj edibles and smoking his vaporizer.  He is in a mj fog from that point on - but he says that it eases his pain and it's the only way he can get to sleep.

Sleep - that ever eluding issue.  Most of acknowledge that as we age, we sleep less.  I think it's a natural progression.  He doesn't!  He will turn his lights out at midnight, but says that he gets a couple of hours a sleep a night.  I wake up often and will hear him in his bathroom.  So I don't think he's sleeping much.  He has fallen while getting out of bed twice this week, and we know from the last doctor's visit that his balance is really bad.  I asked him if he wanted me to get a walker and set it next to his bed at night to help him get up.  Well, we'll just say that was the wrong thing to ask and leave it at that!

In the mornings, he will sleep til 9:30.  That is my absolute limit.  If he is not up and moving by 9:30, I go in and check on him.  Remember how you would lean over your baby and listen to see if they were breathing?  Who knew you did that at this stage of life?  But I have to.....I worry every morning until I hear him moving around.  Yet at the same time, I know he needs as much sleep as he can get.

Daytime napping.  It seems that more often than not when I go to his room to ask him a question, he is laying across the bed, dozing or sleeping.  Probably more dozing than sleep.....but still, he is not doing anything.  TV is on.  Pups are curled up next to him.

Exercise.  Nil.  Nadda.  Zip.  He used to take the pups outside every 2 hours.  We have a motion activated security camera outside and it records all movement.  Yesterday, he took them out twice!  And that is all the exercise he gets.  Other than walking 20 feet from the bedroom to the kitchen.  How an anyone function on that little movement?

He was sitting in his chair last night and I just happened to notice his stomach.  It was very odd looking.  I'm not sure, but almost bloated?  And usually your stomach is quite soft while his was extremely hard.  So something is going on....and I have no idea what....or what to expect next.

more on the distended diabetic stomach here

And then I think for a moment - if I ate everything that he ate yesterday, my stomach would probably look like that as well!

End Stage Renal Failure is a quandary to me.  Uncontrolled diabetes is a mystery.  His unwillingness to care for himself will forever befuddle me.  I have learned that I can't ask him if it's his diabetes because he will become very defensive.  I can't make a statement that the nerve endings in his stomach have probably died off o his stomach isn't processing what he eats....that will only wake up the rage inside him.  I can only be sympathetic to his symptoms, offer to drive him to the doctor, tell him that I'm praying for him (and that often upsets him) or just remain quiet - which seems to be the path I take more and more.

As I sit here writing this at 7:47 am, I wonder if he made it through the night.  I haven't heard him move yet this morning.  But I remind myself that it's not 9:30 yet....I have to wait.  And then I ponder if that is what I'm doing - waiting for life to end.  Waiting for this horrible, horrific, terrible, awful disease to take it's toll?  What have other's done when they were at this point and were the caregiver? Who did they turn to that might understand?

I can fully sympathize because when this is over, I think I will block it from my mind for the rest of my days.  I can see where I wouldn't want to say another word about it, help another person, lend a sympathetic ear....I would just want to completely and totally erase it from my life forever.  And that, I fear, is the main reason why there is so little support for those of us who are healthy caregivers living with a non-compliant diabetic who just doesn't care.

So I get up each day and have plans for my life.  I'm probably gone too much, but I have to get away. I never cease worrying about him whether I'm here or not, so I might as well continue to live a productive life to the extent that I can.  Always asking myself, "what's next?"

DW