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.

July 1st and Exhausted

 I won't lie.

Caregiving is exhausting. It can be Caregiving as a mom to kids, a mom to a disabled child, a young child caring for a parent, or a spouse caring for a spouse or elderly parent or relative.

I watch the latest PBS program on Caregiving which is a 2 hour program. Our Chaplain suggested I watch it as she felt it was interesting. It tells the stories of a few families along with the history of Caregiving and how hard it has been fought for by advocates over the years.

Francis Perkins served in the cabinet of FDR as Secretary of Labor. She was a powerful voice for not just Caregiving but the Implementation of Labor Laws to protect children, and so much more. If you are interested you can look her up.

So, right now I am exhausted. I my insomnia this past week was well used in visiting the night skies and watching the Fireflies mating dances. It eventually catches up and Sunday night I went to bed at 8pm and did not wake up until 5am.

It isn't just sleep deprivation, it feels like my soul is being dragged through a fog. When I am tired like this, everything is ugly. I am ugly. I am short tempered and have to bite my tongue.

What has not helped at all is that the Respite person has become unpredictable. I had a car appointment. As I am waiting for her with keys in hand to leave.

Text: Sorry hon, is your appointment today? I'm running late.

Me: Yes.

Now if anyone knows me, they know my work ethic is extreme. I always showed up before my shifts, was never late, and never had excuses.

Text: I forgot my medicine I have to take twice a day and had to go back for it.

Me: Hmmm.

I was not amused at being referred to as hon. 

Other reasons for being late. Overslept. Traffic. [on rural roads? plan for it!] Can't find childcare. 

I give her the benefit of doubt but it seems more and more that poor planning is the issue. None of the 'excuses' are valid. Not if she would plan ahead.

I'm going to combine that with the stress from the long weekend stay of my friend. I like him, I enjoy his company. I don't mind his pets. But more than one overnight stay is my new limit. And I am not available to waltz around in the woods and watch out for him.

I am going to set boundaries. I need to. Granted he helped weed my gardens, however I told him not to drop the weeds in the grass I just mowed.

See? When you lose sleep and are burned out, every, little, thing, matters.
Muddy dog prints on the floor. Talking when I need silence. Oatmeal on the table. Spilled coffee. 

None of those things normally bother me. 

However I seem to have become a nit picking freak. I tolerate the messes I continue to clean up [endlessly] from my husband as he loses control over some functions. I remind myself he cannot help it.

Then someone comes and adds to the 'burden'. In reality, they aren't really. But in my mind, it is so.

Jason finally got the idea I didn't want him in my way. He left. Rich will miss his company, but right now I won't. I want silence. 

Rich went to nap, and I decided to put off everything else after scrubbing the house and the rugs...

to dive into a place of divine pleasure. Getting lost in some creative endeavors.

 

After all, what really waited for me outside was storm damage that I needed to attend to.

When Respite shows up today, I use my 4 hours to run errands and then come back and start working on the fencing damage. See, the work doesn't stop just because one is tired or angry, or frustrated...

It still is in your face when you step out the door.

I am looking forward to NOT doing anything Hospice or visit related until Ariel comes to visit on the 3rd.

I may pull out chunks of bark and branches and create a fantasy world [all while tending to my husband's needs].

A final note.
With Caregiving like mine, it can be horrible and beautiful at the same time. It is tiring, it is hard, it is worth it.

We are lucky to have support where other folks don't. So I have to count my blessings as well as my gripes. 

But the mood of the Caregiver goes up and down with stress, anxiety, and fatigue. I am human, so I will have human moods good or bad.

And then this...just minutes ago.

Text: Hey hon, I'm sorry but I overslept, these new meds make me sleepy are you okay with me coming at 10:30 and staying until 2:30?

My response...slammed the phone down on the table.
I should have said no but I didn't. 

Me: I'm not pleased at all. I had to cancel the appointment I had for 10:30 and make it for next week for my car.

I told her to come. I have to get sweet feed, fly spray, wormer, groceries, and medications, along with other errands. 

How else am I going to get these things taken care of? 

I will be reporting this to her bosses and to the VA who contracts her company.

I am done with people who do not have a work ethic.

The conundrum? Rural health aides? Few and far in between and very unreliable. Those folks should be paid good salaries and be strongly vetted.

My last thought. If she can't be trusted to show up on time.
Can she be trusted to be a caregiver for 4 hours with my precious husband?

Weekends in hospital

The weekends in a hospital are not exactly full of useful info. I mean a doctor looks in and does their thing.  

What I wish for is a heart to heart conversation, but Dr. P and I sort of had that on Friday. The Living Will and DNR papers are active for now. If he were to go home and come back, I'd have to make sure they know those papers need to be activated as every time a patient comes in, they are considered a Code patient. Meaning, they will save the life if at all possible.

This is pretty good information to know.

Her opinion was 'wait and see'. 

He did have a minor improvement in being able to breathe. Not enough to come off the High Flow Therapy. It is specialized equipment meant for those who have orders not to be put on a ventilator or a DNR order. However, according to studies, dramatic improvement happens in 24 hrs.

That drama has not happened. 

Rich and I discussed trying to find out Monday if he can somehow be put on Hospice at home to pass away. He doesn't want to fight and he doesn't want to stay in a hospital.

Saturday was pretty quiet at the hospital, I sat and read and spoke to the nurses who were all kind and very positive. Apparently Rich is a favorite patient as the nurses quibble over who gets assigned to him for the day. Steroids, antibiotics, and lots of nebulizer treatments all day, all night are what he has going on. 

Rich and I were able to have time to talk about things and his wish is to be able to get off the specialized equipment and to come home with Hospice involved. That would mean visits by a nurse at home and no re-admission with his next exacerbation of his COPD.

The goal for the weekend was to transfer him to a recliner and see if he could tolerate a reduction in the high flow therapy.

Sunday was interesting. Rich's ol' fishing buddy came to see him. While the two visited [Steve said Rich just slept part of the time], I met up with my Legend Girls for coffee for an hour. We chatted and told funny stories and talked about places we'd dreamt about visiting.

I spoke with his Resp. Therapist in the hallway and asked her if she thought he'd be able to come home with Hospice. I told her that we'd discussed it. She said that was an excellent program for him and his wishes. 

When I came back from coffee time, Rich's daughter, her hubby, Ariel, and Steve were all in the room. 

Since Steve was ready to leave, I took the advantage of that. Ariel and I went home to take Charlie for a nice long walk on our gravel road so he could do his doggy stuff. 

On the way back in...I  stopped to see the nurses. The daughter, her hubby and a surprise visit from our friends in Missouri had all visited but had gone out to lunch.

The nurses said Rich was exhausted. They put a Quiet Time sign on his door and I texted all visitors that Rich was not going to see anyone from lunch until at least 3 or 4pm, they had to see me first in the family waiting room.

So the end result of Sunday was that a lot of folks came by. He did get in the recliner. They did reduce the airflow on his High Flow pillow cannula and he did seem to have a slight improvement in breathing. 

He actually ate 3 bites of an omelet at breakfast, drank water, had a milkshake for lunch, and had half a little burger and a milkshake for his supper.

Monday. Today, I hope to get some sort of directions from a doctor as to whether our plan and goals are even doable. I will be calling the VA Social 'Miracle' Worker to see what our options are through the Veteran's Administration.

The Missouri folks will stop in shortly to see Rich this morning and then they will head home.

Tuesday afternoon we have a Winter Storm Watch with blizzard conditions possible, high winds, and either rain and snow for us or 6" of wet heavy stuff.
If I am forced to be home through the storm, I will catch up on rest, and get the laundry folded.

I have to include this in my update for this morning. People and neighbors are incredible. 

There were visits to Charlie, there was prepared food put in my frig, and groceries left on my counter. This all done just because.