A question about letting another man into my life.....

I received this comment......
 

When it comes to pass that you start to think about whether or not to let another man into your life, I'd like to know your thoughts. Sometimes I feel like I'll never want another person to make me their nursemaid (or a slave to their lifestyle) again. Other times I have hope that it's possible to find happiness in a shared life with someone who takes good care of themselves and so might even help you (me) to also be better and healthier and happier for the relationship. There are many different points of view on this but I'd really like to hear your thoughts as you go. Thanks again for your honesty and forthright-ness. Managing (but barely)

And you know, a month ago I would have screamed "absolutely not!"   But a couple of days after my last post, my youngest sister decided that we should take a last minute getaway trip over the Christmas break.  She wanted a beach.  And nothing outside of this country.  So we found a cheap flight to San Diego, then a beach front hotel and upgraded to a beach front room and wow!  it was exactly what I needed and I didn't even know it!

She has been a widow for 15 years (compared to my 5 months) and is wise beyond her age.  She said that if the right man came along, she would consider letting him into her life.  However, her list of criteria for this perfect specimen is probably unattainable!  LOL!!!  She said that for the first year after her husband passed away, the thought didn't even cross her mind.  Then she attempted to date.  Two different men.  Both were huge failures.  And she was much younger - in her early 50s.  So she quit dating altogether.

However, about 9 months ago she moved into a retirement center and she has been meeting the men there, socializing, getting involved in events and has decided that what she once thought was impossible is now at least a thought.

She also acknowledged that it would not be a thought for me and that is so true!  But she told me to be open about something down the line.

So that's her wise advice.  At the moment, there is just no possible way that I will ever open myself up to any relationship.  As the comment said - to take on the job of caregiver again?  And at my age, that is likely what would happen at some point down the line.

I miss him.  I really do.  I still have weapy days.  I have tear-jerk moments over the silliest things.  I kept a bottle of his cologne because I have to get to where I can smell it without crying.  Stupid and sad.  But it's all part of the journey back to normal.

I still get so pissed off about how much work I did to take care of him.  Yet I would do it again in a heartbeat because I loved him.  I get pissed off when I meet someone who has diabetes and they tell me they don't care - that they are going to eat whatever they want.  I literally have to walk away so that I don't explode!  And I do explode whenever anyone tells me they are pro-marijuana!

So to go through any or all of this again in my lifetime seems utterly ridiculous at this point.  However, love is blind and we all go into a situation with rose colored glasses.  I've learned that if nothing else!!!

Pretty sure my goal right now is to find happiness in my life on my own without anyone else. And I am getting there!  I have an interview with a realtor this afternoon and will line up a few more in the next 2-3 weeks. I'm applying at more apartment complexes to try and find a small apartment that I can move into so I can get my house on the market.  All the while I'm sorting, boxing, packing, making trips to goodwill, listing a few things on ebay.....cleaning out the clutter and downsizing.  This little town will be my home base as 2 sisters live here, but I really want to travel.  Take trips like we just did.  Get away as often as I can.  Find out who I really am - without the burden of caring for another person.

Overall, I'm doing better than I thought I would and that's a huge plus!  Tonight is New Year's Eve and I'd like to wish each of you a very happy New Year.  May 2019 be filled with blessings, joy and good health!

DW

Almost 5 months

I had promised that when he died, I would continue to write.  But I can see why so many don’t.  It is hard to think about diabetes because I truly want to completely forget about it.  I don’t want to remember a single thing about it.

Yet I continue to meet people who ha be it.  My 40 year old son has been diagnosed as pre-diabetic.  Yes, I sort of just want to scream at him!

It is hard not to admonish people when I see their plate fillers with carbs and sugar.  But it is their choice.

It is hard not to give free,unsolicited advice!  But I don’t.  It is their disease, just like it was his.

I think that’s one of the hardest parts of being a diabetic widow.  Yep...new title.  But that’s what I am.  Not just a widow...but a diabetic widow.  Someone who lost their spouse to this needless, senseless disease.  But still...it was his disease, not mine.

I have finally finished all the paperwork, business, and legwork of death.  That is a happy place to be.  It just take so much time.  Bank accounts were the hardest.  T-mobile was by far the easiest!  I’ve started ebay and am taking that ever so slowly.  And I’m still sorting, cleaning, preparing to move.

But the social aspect of living is getting better.  I’ve started taking art classes,  going out to lunch and dinner with friends, have even taken a couple of short trips.  Winter has set in and the yard work is over for now.  I’m back to crafty indoor projects...recovered som office chairs, made some pillows and getting back into the swing of living.

Don’t get me wrong.  I still have my weepy moments.  And my crying moments.  But they are getting fewer and farther between incidences.  I have moments when I miss him so much I can’t breathe.  I have moments when I still get so mad at him I can’t see straight!  I think all of that is just normal grief.  But all of it is evening out, becoming much less of my life and more of my past.  You have to keep moving forward so you don’t fall into a dark hole.

My foot has healed nicely which helps.  I’m hoping to start walking soon and that will help.  Please pray that an apartment opens up so I can get this house on the market.  It would be one less thing for me to worry about!

Bottom line...life is good and I know it will get even better.  Hope you are hanging in there!

DW

Three months

Hard to believe that it has been 3 months since he passed away.  I continue to learn.  I continue to grieve.  I continue to be surprised at life.

He and I had such a full life.  Even with diabetes.  I only wrote about the diabetes here and I realize now I should have written more about our overall life.  It was kind of amazing.  We had 20 years together.  We traveled so much before he had his heart attack 9 years ago.  He took me backpacking in Europe with a train pass.  We did a 2 week cruise through the Panama Canal.  We used to go to Hualtaco Mexico every year.  He took me to Hawaii, the big 50 for my "big 50" birthday party.

The man loved buying jewelry and would shower me with gifts.  Any occasion.  And he loved giving me flowers.  He made me laugh.  Even on our very last trip in our little travel trailer....I can't tell you how many times we laughed about the little things in life, about the mistakes we made camping, or over our 2 chihuahuas.....who definitely had their own opinions about camping!

I find myself focusing on the good memories.  And I think that's what we all do when someone we love has passed away.  Yet there are moments when I can't get past his diabetes and the all-consuming issues it brought to us on a daily basis.  The constant, never-ending roller coaster ride of highs and lows, emotional outbursts, devastating threats....that had become a way of life the past few years.

Life goes on in a very different way when your partner dies.

Snow came early to this tiny valley this year.  Took everyone by surprise....as did the cold snap.  I got my sprinklers blown out just in the nick of time.  The pond drained, the fountain drained, the gazebo curtains packed.....and I missed him because he would help me fold the curtains and get them packed away.  It's those little things that we did together.  He was there holding the ladder for me.  I used to laugh and think that if I did fall off of it....there's very little he could have done.  But at least he was there holding on to it.   I still think of him all the time.

So, I dropped a box on my foot 2 days after he died and broke it (unknown to me).  That is still causing me some difficulty....but it is healing.  And it does slow me down.  I have my days when I just sit in the recliner most of the day.  But I am making progress.  Both bathrooms and 2 bedrooms, the hall, living room and kitchen have all been gutted, cleaned, painted and ready for when I put the house on the market.

Everything is either packed for storage (not much at all) donated, sold, or boxed to go on ebay next months.  

It just takes time.

I think my best advice for this stage is to follow your heart.  If you are sad, let yourself just be sad.  For an hour or so.  Make lists.  So that when that hour or so are up, you have a place to go to see what needs to be done next.  All the easy tasks are done on my list.  LOL!!!

Break down the harder tasks into a series of smaller tasks.  Clean the guest bedroom becomes something like this:

1)  clean out the closet
      a) 3 bags:  goodwill/storage/trash
2) take paintings, art off the walls
3) putty holes - let dry overnight
4) prep room for painting/tape windows and walls
5) paint
6) rehang paintings just enough for staging

When I break it down like that, each task becomes simple and manageable.....not nearly as overwhelming as "clean guest bedroom".

And then there's the process of downsizing.  Six years ago we moved from 3700 SF into 1120 SF.  You'd think I would be used to this!  Now I'm thinking of moving into 500 - 700 SF.  So here's my process when I look at each item:

1)  is it something that I use on a daily basis?
     a) yes - keep
     b) no, then

2) is it something that has historical family value?
    a) yes - find a new family member to give it to
    b) no, then:

3) is it something that I honestly need to keep?

Here are a couple of examples of that process.  Flour.  Do I use it every day?  No!  Do I need to keep it?  Yep - for obvious reasons.  But, I went from a 10# storage container to a 5# container as I know I will never use 10# again at one time.  My next question is can I reduce to a 2.5# container?  When will I ever use more than 2.5# at one time and I can always go to the store and replenish.  So yep, I'm now down to just 2.5# of flour and sugar.  Definitely space saving!

Another example.  Shoes.  ha ha!  This was a tough one for me and trust me, I have shoes!  Summer, winter, boots, sandals, flips, water shoes, waterproof shoes, dress shoes, tennis shoes, casual shoes.

1)  have I worn them in the last year?
     a) no - donate to a charity
     b)  yes, then

2)  are they really comfortable, or did I just wear them once or twice?
     a)  once or twice - donate
     b)  comfy, then

3) think of the aging process - how likely are you to wear them at least once a week?  with more than one outfit? are they a good color for a lot of different occasions?  are they sturdy, will they last you for more than a year to come if worn often?

I think you get the gist of the questioning process.  I'm down from 40 pr of shoes (I said I had a lot!) to 15 pairs.....which is still way too many, but it was a start for me!  I had a few pairs of very expensive shoes/boots that will go on ebay.  But I gave numerous pairs to a local charity.  And of course, if they were worn at all, they just went into the trash!

As I continue to clean and sort, this is the process that I go through.  But there are more difficult questions.  IF I were to move into a studio apartment, about 500SF, then I would be going into the "tiny house" arena and that will create a whole new through process.....something in the back of my mind but something that I'm avoiding at the moment!  It's so hard to imagine doing "tiny house" living when he and I had such a gigantic life in so many ways!  Yet at the same time, death always brings change and I need to learn to embrace these changes.

Social life.  I have to force myself to be social.  I'm just not ready.  Yet I realize that this, too is part of the grief process and I need to force myself to be social.  I have declined so many invitations to join other people in their activities.  But that will change.  I have started out by taking an art class.  With some people I already know and some new people.  Classes are good because you don't have to force a conversation like you would at a meal.  In a couple of weeks I'm flying to Arizona to an art retreat.  Five whole days of art.  It's a class type setting so once again, I can just sit and learn.  Fill my mind with something completely entertaining (for me!).

Meditating.  I have a very deep spiritual life and prayer is my mediation.  I can definitely see the value in that.  If I didn't have it, I would be lost.  And it is one of the key components of the grief process....some type of meditation.  It helps me to slow down.  To take time to breathe.  To listen.   Three months of some very deep grieving and I don't know if I'm done yet or not.  I don't think so.  Something in my mind is telling me that I may never get past this in a lot of ways.  Yet at the same time, I know I am moving forward and making progress towards the next chapter of my life.

In the last 3 months my life has changed in a lot of ways, yet some things have remained exactly the same as they were.  I don't know what I expected but I am content with where I am at this moment.  And that makes me happy.  :)

DW

Replying to comments

Perhaps the best way to get caught up is to just reply to comments.  Yes....2 1/2 months and I'm still busy with grief, paperwork, banks, finances, research, cables.....

calvinnme wrote:

Both of my parents died earlier this year within two weeks of one another. They were past 90, so I can't say it was a complete surprise, yet it was a shock and it was very sudden. Yes, the sluggish rate that the system moves at as far as insurance, settling estates, etc. was quite a shock. My dad died last, and the first issue we hit was his death certificate. Nobody at the hospital wanted to sign off on it. He died alone in his room in the middle of the night, but it was obvious natural causes - heart failure due to congestive heart disease. We had to finally get the family physician to sign it, and then it was another month struggle to get hold of their checking account so we could pay their bills. Now, in spite of their finances being well organized, in spite of most of the financial institutions involved knowing both of my sisters (the executors) because they often took dad to deal with his finances when he was alive, it took FIVE MONTHS before we saw any name change on any accounts. Things I never heard of - medallion signatures, having to go to court to probate my aunt's will because she died the year before and dad was too sick to deal with wrapping up her finances properly - she doesn't even have a headstone yet! Now mind you, my aunt never married and had no children - who would possibly legitimately contest her will??? Yet the system demands it. I can only imagine how rocky this would have been had my parents not sold their home of 44 years six months before they died. Oh, and the funeral home and cemetery - the biggest in my home city where EVERYBODY is buried - put one plaque with the wrong name on it across my parents tombs in the mausoleum, as if just one morbidly obese person was buried there rather than my parents in adjoining compartments. I do feel for you as you wrap things up. It's good that you have family nearby.

I have started telling everyone to put $5K cash in a lock box at home.  Simply because nothing can be done for 10 days or without a death certificate....whichever is the later.  Then get a LIVING beneficiary on everything!  My biggest shock was that while in grief, I had to change the beneficiary on everything of mine because he had been my beneficiary.  A will means very little when it comes to a bank.  A financial power of attorney is null after death.  You think you have it all figured out.....and then you find out that you don't!  And honestly - you don't need any of it when you are recovering from the shock of losing someone you love.

Managing wrote:  

Are you starting to feel life on your own terms is taking place yet? Your days are filled with things of your own and no more the degenerative and heart-wrenching daily events of watching the man you love draw closer and closer to death?I know you are caught up in lots of "admisistrative tasks" as well as the surreal aspect of life without him, but if you take a moment to yourself, can you feel a little bit of "freedom" in this new existence on your own terms? Sorry if this sounds voyeuristic. I just imagine that there wil be some "release" of some sort when it is all over. 

Yes and no.  That is a hard one to explain.  Sunday, I started cleaning and painting his bathroom.  Two full days later and I'm almost done.  But it's been 2 days of yelling and screaming.  The end result of gastroparentesis is a whole lot of explosive diarrhea and now matter how much you clean at the time of the incidents, there is residual left over.  I put on a face mask, plastic gloves, very old clothes and was armed with about 20 different cleaning chemicals.  After gutting the bathroom of everything, I scrubbed, sanded, puttied, patched, cleaned, painted, caulked.....and it almost looks good.  But in my head, I know that I merely painted over whatever it is that would not sand off.

And during those 2 days I certainly said enough bad words about diabetes, about him, about the entire situation.  But the relief is in knowing that I will never do this again in my life.  So in a way, it was healing.  And also healing in knowing that he will never do this again.  His stomach pain is gone.  His inability to digest food, the vomiting, the diarrhea, the smoking marijuana daily....it's all over.  

I did not know that when you smoke marijuana, there is a film that gets on the walls, cabinets, floors.  And when you get into a hot, steamy shower, the steam turns that film into a liquid that looks like a bottle of caramel syrup exploded on the walls.  And that when that "syrup" dries, it hardens like brick an you literally have to sand it off the walls.  Oh!  The things you learn that you don't want to know!  It was a lot of very hard work getting those walls clean and I am NOT that young!

Managing also posted:

Your honest and helpful blog is a saving grace to me. Now too, knowing how much trouble everything is to deal with and then in the future, will you be able to just focus your memory on the good times and the great husband that you had before Diabetes wrecked him. Those things coming from you in your honest and loving way mean the world to me in my similar struggle. It is still True Love even when the person you love is so difficult that you can't even be around them. You honestly portrayed that in your blog. THANK YOU SO MUCH! Life is a strange thing with horrible and wonderful all mixed in together. I wish you an abundance of wonderful as you move forward. Don't choose anything but that as you begin allowing new things into your life. Funny thing is I think these blogs last forever so this and what you put down in the future will help people for long afterwards too. You are a Godsend to all those searching for help in this horrible thing - Diabetes. With prayers for your peace and clarity to follow the path ahead as well as thanks to God for you sharing with us, 

Thank you for your kind words.   Obviously, I'm not focusing on the good times just yet.  But I am getting there.  It is still one step at a time, one minute, one hour, one day.  I'd equate it to childbirth.  In time, you forget the pain and only remember the joy of the new baby.  I'm hoping to enjoy my new life.....once I get there.  And I know that will happen.  I also know that it just takes time.

I've sold the travel trailer to a wonderful couple who live just north of me.  New lifetime friends.  I've had a garage sale and the "first layer" is gone.  I've finished sorting out cables and trust me, what's left has been labeled!  I'm the only house in the world that has a p-touch label printed on every cable inside!  But I know what they all go to!

I'm still working on the computers.  I'm still working on his out-of-state bank accounts.  About $4K that I literally have no access to.  He made his son the beneficiary.  They were estranges.  The son is refusing to contact the bank.  All I can do is wait.  On the other hand, if $4K is the price I have to pay to be done forever with his very ungrateful children....I'm fine with that.  Financially, I am good.  Not necessarily because of him, but because I worked my entire life and made some good solid decisions in that arena.

I am still in the process of downsizing and on the wait list to get into an apartment in a complex about 2 blocks from me where my youngest sister lives.  (She pops in twice a day and my other sister is here every day).  When I get an apartment, I can start the next phase of my life.  The second bathroom is up for painting this week, but that will be a much easier task!  Then I will take a room at a time, pack it up, patch and touch up paint and hopefully get down to apartment sized living.  In the meantime, it's October, and there is so much yard work to be done.  All of the gardens have to be cut back in the next 2 weeks and the outside winterized.  We have a gazebo and a pergola with other outdoor living spaces.  It all gets packed into the garden shed.  The small greenhouse has to be winterized.  Today, I'm digging up Iris and Day Lilly bulbs as they need to be thinned out this year.

So life does go on.  Gardening is wonderful therapy.  I still love it more than anything.  It's a time to talk with God and to meditate and to be amazed that in October you can still have fresh new blooms.  Sort of a metaphor for life.  Something can bloom at any time!

DW

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