I figured it out...

 It isn't so much as being cranky and tired, although that will contribute to my current feelings.

I keep a paper journal. You know, one of those spiral notebooks with paper in it. The kind you have to actually pick up a pen and write with.

I use it to write down meandering thoughts and mostly the stuff I won't post anywhere on the internet. I can say what I really want to say about certain things without the danger of anyone being offended.

I can approach politics, religion, medical care, and people without any blow back. Well, I suppose if the journal is looked at after I am dead, somebody somewhere may be offended.

I finally realized the Why as to How I was Feeling.

I have run out of empathy and sympathy.

One friend who visited did nothing but talk about his 'situation' and his hardships and his struggles when he came to visit. In the past I offered empathy and listened intently.

My Respite girl who keeps showing up late has offered up her tales of woe without me asking for them. Normally I am the type of person that will listen and figure out if there is a way I can help or perhaps show verbal support. [Her tales of woe include 'excuses' for how and why she ends up being over an hour late]. 

[My thought on inconsistency is this. If I cannot depend on her to be timely, can I entrust her to care for my husband while I am not home? 

Hubby's thought is this. He is a Vietnam Veteran who fought in ground battles in country. IF a person did not have your back and did not act with responsibility, you could die. Pretty simple and direct views in my opinion.]

Here I had two people who came to 'give' me Respite and comfort [Shay's job is this] ... didn't. Instead they focused on their issues and problems and dumped them on me.

So while rambling and writing...this light bulb came on and suddenly I felt much better. I understood where my darkness was coming from and why it was bothering me. 

Here were two people over a period of days expressing all their challenges. They forgot that they were expressing their challenges, issues, problems, to someone who is caring 24/7 for a person who is dying.

They seem to forget that I am having daily emotional mountains to climb. Every day, I watch my soul mate disappear little by little. I am putting everything in my life on hold for his care. I am giving up the things I love to do and things that give me strength and emotional release for him.

My inner self has built a wall that never shows really how I feel on the outer self. 

[It's complicated--> that is how I grew up--> some day I may explain that ... just say, that is how I survived an abusive childhood with mom.]

I'm done feeling empathy and giving support right at this moment for those who need and crave it at every turn. 

Shay did show up on Tuesday and offered up some incredible 'reasons' for being late. She claims they are not excuses and said sorry sorry sorry about 100 times. 

I was chilled to the bones, I just raised one eyebrow as she dug herself deeper into a hole with me. Could she not read my face? Was she so wrapped up in her issues that she could not see how stiff I became? Did she not feel the cold air wafting off me?

She begged to let her come on the 4th where she could make Holiday pay and I reminded her that my Granddaughter would be here and that it would be family time. She asked to come another day [to make up for her loss of pay]. I stated that I'd see her Tuesday the 8th at 9:30 sharp. 

I'm giving her Tuesday because I have a car appointment that I need to get to. After she is done with her shift ...if she shows, I am calling her company and the VA to let them know that she is not living up to expectations. 

This issue changes the dynamics of trust which is a very big issue for hubby and I.

Audacity

 I rarely get really irritated. 

But when questioned as to the 'why' I need Respite Care ... 

I'm sure the question was meant to be innocent but what I wanted to spew back out could have been rather nasty. I bit my tongue and just pulled my phone away for a moment...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~`

Do you need rest from someone calling out your name at all times of the night for one reason or another.

Oh sure. Those of us who have been parents understand this. A baby cries in the middle of the night and you are up to see what you can do to stop the crying. It may be a messy diaper, hunger, tummy ache, or something else. 

I was a young mom and could handle that rather easily. I mean come on, when you are in your 20's as I was, a sleepless night was nothing. I simply handled things and went on about my day. After all, that beautiful crying baby was so amazing and I was so full of love and adoration.

Fast forward 45+ years. Sleep. Oh for wonderful uninterrupted sleep. That sleep that evades us as we get older.

Things happen in the middle of the night. Things like the commode being missed, or a wardrobe failure. Or even the malfunction of the oxygen concentrator so the large 02 tanks had to be brought out. Then hubby was afraid to go back to sleep for fear that the 02 tank would run out. 

Can I have a glass of water?
Can you make me a snack?
Can you help me [pick something, anything. Pull up pants, put on shoes, button a shirt, become a short order cook, change the concentrator hoses, help with the wheelchair, socks, shoes, ~~ well, the list goes on with about anything one can think of.]

That is not to say that I can stop mowing the yard, cleaning, doing laundry, chores, and all of the other little things that have to be done on our small place. That includes juggling a schedule of the weekly bath, and other visits from the Hospice Team.

However with 4 hrs of Respite [twice a week], I can leave a load of laundry to be washed and dried, the dishes are done from lunch and often there are fresh homemade cookies on a plate or in a zip lock bag when I return. Sometimes, if I remember to put something else out, there can be a cake made also!

Last week Shay made a cold Italian salad that I'd laid out to make when I got home. Goodness. My supper was made!

She'd also swept up Charlie hair and cleaned the bathroom and organized my messy cabinet drawers.

On Sunday evening my neighbor Justin came down as promised and mowed down two large thistle patches that he'd promised to help out with. Last year it took me 3 or 4 days to chop it down with our scythe. He finished that job in an hour and said he'd be happy to do it again. Of course he was having a man and machine moment. Guys love their gadgets and he has a brush mower that he pulls behind his ATV.

Thistle patch Sunday morning before I asked Justin to mow it...I was using the scythe once more and decided I just didn't have the time...

I related this to a certain person. Apparently she felt that I didn't really 'need' Respite or all of those nice things that were 'given' to me. Why did I need that? After all, .... YOU are retired! What else do you have to do with your time??? Make HIM do more! He is just faking some of it. 

This person has never been with my hubby when he is getting dressed. Nor has she been with him for a 24 hour period. She has not seen the daily struggles.

For example, getting dressed seems like such an easy thing to do. Except when it isn't. Baby steps to get dressed. Simple things become mountains.
Yes, this is part of a life ending disease and that is what Hospice is for along with Respite care to give the Caregiver a break.
AND...I love my breaks.

So when someone doesn't understand why I need them...

Well, perhaps they might if they were to walk in my shoes for a couple of days.

Anyway this was my rant and my rave. 

I pushed the end call button and stared out the window.

Audacity: rude or disrespect behavior.

Ignorant: lacking knowledge or awareness in general.

I think I'll go with Ignorant. It fits better.

The hardest thing I did was to ask for help. 

The person not understanding my need for Respite? His daughter.

I'm changing the Ignorant...to

Willful Ignorance:
the act of intentionally ignoring or avoiding
information that could be inconvenient
~~ a conscious choice to remain
uninformed especially when
--my words--
when the information could be 
uncomfortable

[as much as this sounds like complaining, I want to state, that this is very valuable time between my husband and I. At the moment his condition is deteriorating and his edema is beginning to become a huge concern. I do get tired of the endless responsibilities. I don't hate our time together. I cherish it. Sometimes I get very cranky from lack of sleep and frustration of always being the adult. 
Yet I still strive to make his time left with me as comfortable as possible.
He is my soulmate after all.]

Let's just not sleep...ever...

For real.

😵‍💫

Let's just face it. I get really quite cranky and ugly when my sleep is interrupted multiple times a night. Especially when the sleep wasn't good for the past few days.

I know why some people choose a Nursing Home over caring at their own home. The demands are sometimes super human. 

His med change hasn't changed his sleep habits. For two days we thought we had it going pretty good.

Then bam.

A half hour after he went to bed, I got the "Val. I need that pill." I had just turned off my reading light and started to fall into dreamy land.

Lights on. Pill handed out.

That med worked for 2 1/2 hours. "Val. I'm hungry." I looked at the clock. Midnight. "I want oatmeal."
Lights on. Bleary eyed I made instant oatmeal. I went back in the living room to wait. Tap, tap, tap, tap...the endless tapping of stirring his oatmeal into tiny chunks felt like a hammer in my brain. It was a hammer in my brain. My teeth hurt and my eyes squinted.

So this is what a major- burnout -melt -down felt like. I wanted to walk into the other room and grab his cereal away and then tell him to cut it out and JUST GO to BED!

Then the waves of guilt hit me like a brick up side my head.

He couldn't help what was happening to him. He can't. It is not his fault. His brain says feed me. His brain says *I'm awake.* 

I clear the empty bowl away and say something snide under my breath. Where did that come from? Geeze, I'm so bad. I hate myself for a moment as my head starts to feel squeezed.

I ask if he is ready to go back to bed. He says no, he can't sleep. Do I call the nurse line and ask if he should have another pill? Rich says no, it won't help. He is wide awake. 

He wants to sit at the table and just sit.

I go back to my little cot which feels like a torture chamber. My everything aches and my head throbs. And I am surprised by how angry I feel.

Damn.

At 3am--ish he wheels back towards the bedroom. I help him switch over to his CPAP. He decides to leave his clothes on and lays down. I try to lay down again.

He gets back up and sits on the edge of the bed.

"What now?" I ask.

"Nothing," he replies.

I get up and find some Tylenol and try to find slumber. Charlie groans when I return to the cot. Even he is tired out.

I keep an eye on him. By the light of his clock and can see him attempting to peer at his hands as if he'd never seen them before. What is he doing? 

I fall into a fitful sleep and am awakened an hour later as I hear him get up and sit in his wheelchair. The lights go on and as he scoots through the living room he says, "Coffee made?"

My head blows up and I put on my clothes for the day. I grumble under my breath with words I shouldn't use around children or the dog.

Night and day blend together in a nightmare. Rich asks me why I am so mean when I put his coffee cup down harder than I intended to.

I apologize and explain that my head is pounding from lack of sleep. He just looks at me. He hasn't had sleep, his night must have been even more miserable than mine. I take a deep breath and rearrange my attitude.

My mantra.

It is not his fault.

It is not his fault.

It is not his fault.

Be kind. Be kind.

Think kind thoughts.

Stop before you say things.

And then my biggest fear hits me. What happens when he is gone from my life? Maybe that this is why I am here. This is us. I will not look back on these days with anger but with more understanding of what it is like.

Maybe my experiences could help someone else.

Get in the mood...or not.

  Oh sometimes I get in a mood. Certainly being stuck indoors does that to me. 

Introspection is like taking an x-ray
of your emotions,
thoughts,
and behaviors.

~

After all, being stuck inside makes me cranky. So I start thinking. How did I get to this point? Am I a good person? Am I happy? Am I...

Well, you get the idea. So much has shaped me [just as it does others] over the years.

Then I look in the mirror and realize that I am not the same person on the outside that I feel like on the inside. I feel no different than when I was much younger. My soul is the same, the package it is harbored in has changed.

Why do people see the outside and never the inside?

Why do we have to be so strong when we feel so exhausted.

Heavy thoughts for a grey day.

Next week is my first shot of Prolia which could become a lifetime commitment. Some of the pros and cons go like this...

Lifetime of shots every six months. 

The bones are like an organ. The spine holds the rest of me up. The bones support my organs. Without my bones I would be helpless. So the decision is to try and save my bones just as I would try to save my heart or any other vital organ.

The cons are there too. In the form of side effects. I'm going to think positive. IF I get along with the Prolia, quitting is not an option after a year or so. If one quits, the incidents of spinal compression fractures increase exponentially. The other choice was to try an infusion of the cocktails of meds that already led me to great pains.

That would have been once a year. Followed by IV steroids to combat the painful side effects. [yeah...um, no! Needles and IV stuff? Oh yuck!]

This all is going to occur right at the holiday time. 

Since I am having a moody few days, I may as well say it. The things I miss most are the family get togethers that are done this time of year. I do feel lonely. I don't have the option of just going to visit my kids and grands. [They all live at least 4 hours away]

My step family does ignore us during the Holidays. We became nonexistent once I stated that driving 2 1/2 hours one way to have dinner and visit then drive back home at the end of the day was no longer an option. 

Imagine having to haul all the oxygen equipment and medications. [and at that time, hauling my MIL who could barely walk and soaked her diapers if sitting too long] 

So I fight sad thoughts during the Holidays with a cheery smile and hide behind that smile. 

Not all days are like that. I do find relief in my own ways as long as I can get out into the woods.

Credit to Charlie Mackesy: The Boy, The Mole, The Fox, The Horse