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?

Not a good start to a weekend...

This new territory of Hospice and medications is a new experience for me that I'd like to share with other folks so they can understand what to expect if they are to choose this path.

First off. Thursday night was one of 'those' nights. Rich had trouble sleeping and would wake up and sit on the edge of the bed for a hour or so at a time with his CPAP on. Sometimes he'd turn the light on and sometimes he wouldn't. 

I'd hear it and get up to check on him. He said. "I'm fine. Just can't sleep."

Finally at 3:30 he was up once more and called my name. I drug myself out of bed and answered the 'call'.

By 4 we were having coffee and as I was making a cup for myself. He suddenly called for a bucket as he was having the heaves. He had a bit of nausea that eventually passed and I made him his breakfast by 5ish.

By 6 he was ready to go back to bed, which he did for an hour and then was awake again. 

The new medication that replaced Prednisone was dexamethasone which helps him breath much better but has nausea and insomnia as some of the side effects. IF anyone is going to have side effects, it is my husband. 

A good side effect was getting his appetite back. 

That passed and by the time I made CrossFit and picked up a few things in town, I'd already put in an 8 hour day. 

Late Friday night, Charlie woke me up by standing on my chest. I told him to go back to sleep. Then ick. I heard the retching. The poor thing, poor me. By 3am Charlie finally settled down after being ill quite a few times.

This morning he is refusing to eat so I'm going to make some cooked rice for him. -- He has had water.

My other half got up complaining of a tummy ache and feeling off. Now hubby takes some pretty powerful opiods to ease the pain of breathing [I cannot imagine since it is no effort for me]. 

A side effect of these meds is...well. You know. Constipation. We have meds to counteract that side effect but once in a while when prunes and prune juice doesn't work.

Um. Other efforts must be done.

I won't go into detail. 

But let's just say that 'we worked things out'. 

We had a bit of a chuckle when we were all done. 

Now back to nursing Charlie. There are no small animal veterinarians available in our rural area on weekends. So I'll be working on him next and doing some cuddling with the little guy.

We never quite know where life is going to take us and I must say that my experiences with hubby, my MIL, FIL, and my father have proven invaluable. I've learned so much about elder care and caring.

Not a thing that happened to me this day was 'disgusting' or gross. As they say "Shit happens".

My one grand daughter was curious about these things. She said she wanted to learn about this process we call life and elder and end of life care so that it wouldn't be such a shock when she encounters it with her own folks.

She said her mom keeps getting shocked and surprised by the things she has to do for her great grandmother [96] and her mom [mostly blind]. 

Life is a process. I've had so many great years with my soul mate that I don't mind caring for him. It is a reflection of caring and love.

Sure, some days I feel it is a huge burden and I even get a bit tired of being 'on call' all of the time. I am going to call my social worker from the VA [if they still have jobs!] and set up a companionship day each week for hubby. 

It will give me a break one day a week for a few hours to go hiking and doing outdoor photography.

You all have a great weekend!

I see snow in our forecast for tomorrow after an 80 degree day yesterday!

Both patients seemed to be recovering. So now I am going to let my laundry fold itself while I get out a clean blanket and read a book until I fall asleep. Wait...does laundry fold itself???

Hubby and Charlie are snuggled in taking a nap. How sweet is that?