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.]

911 where is your emergency?

I gave him my address which appeared on his call board as I called from our landline.

"What is the nature of your emergency?"

My husband, difficulty breathing, he has severe COPD and contracted a cold.

We went through his name, age, and a quick medical background. Then assured me that help had been dispatched and an AED was on the way.

I'd put Charlie in the bedroom upstairs, moved things around for the medics to make getting through the house with a stretcher easier.

The dispatcher asked that I put any pets in another room. Done, I told him, and I said I had to move my vehicle to make parking easier for the rig. 

Done, done, done....

The first vehicle to show up was a Sheriff's Deputy. A text from Olive on the ridge said that her husband had run out to the road to make sure they could find our address. [I'd texted her to let her know why she'd see emergency vehicles coming down the road with lights on]

Next came the the Fire Department Suburban.

I thanked my lucky stars that we didn't just have a snowstorm. 

The amazing part is that in this rural part of Wisconsin emergency services are quick, polite, and well prepared. A few times the head Paramedic asked me if his DNR bracelet was still in his wishes. I said that he stood by them and so did I. 

We drew the best ER doctor we could possible get. His father was a well loved doctor here for decades. Little Mac moved to the area several years ago to be with his father as he retired, leaving the Chicago Cook County ED. If you have ever been to Cook County ED, you know it is one of the biggest mad houses in the universe.

When Rich's fingers began to turn blue when I was talking with the ER nurse, things got hectic. Little Mac rushed in, the upped the 02 in the cannula, a respiratory therapist left to get a specialized mask. I stepped out of the way. I watched his body jerk and his eyes close as he struggled for air.

The specialized mask was put over his face and head. It is often used in ICU's and is the predecessor to being intubated and put on a ventilator. Again Little Mac asked if the DNR was indeed what Rich wished. I said yes. 

It took some time for them to get him stabilized. The respiratory therapists proved their mettle as they worked with the Nebulizers, the mask, and cared for him.

Once he was in stable but critical condition we discussed what next. Little Mac didn't feel he was stable enough to go quite yet to a larger hospital. He'd need special care with that portable ventilator.

To the doc's credit, he was able to communicate this to Rich. Rich asked to stay here locally. Little Mac said he'd have to come off the specialized mask. They spoke quietly about his wishes.

Little Mac went over it more than once. 

"Let me be perfectly clear, you want no life saving measures if you have another episode." He looked at Rich who nodded and breathed out. "Yes."

Little Mac looked at me.

"Yes, his wishes are my wishes. I stand by him."

~~~

So how does this feel? 
It makes your heart race, your chest hurt and your soul cringe.

While his daughter was still at the hospital I went to work out at the gym with my Fellow Legends.
Burning off the interior feelings of helplessness, rage, fear, and anxiety really helped. 63 burpees along with 63 dumbbell lifts, and 180 feet of lunges helped chill me down.

I was able to go back to the hospital and face the new attending doctor along with her questions. So this morning I'll bring in his Living Will along with his DNR papers so they can have it for their files.

I stayed all day and read a book while he rested and read a book. The library is providing good reading while I tend my soulmate.

I am weary but determined.