I don't know...

It's ten days now since he died.

image found on Google search.

Ten days of things to do and things to take care of, and all the life goes on stuff.
Still much to do, a lot to figure out, and everything is hinging (hingeing?)on everything  else. Tried to call Social Security, but no one on the phone would talk to me. Couldn't give me any information related to Rex because of not having his permission. Never mind that he has deceased, died, is unavailable. They can't talk to me without his current consent.

Good luck with that.

Will have to go to office, which has to wait until I have the death certificate. I'm going to have to go in person, so I can go to Batavia. If  try to make an appointment from home, they will send me to the Portsmouth office. I barely know where Portsmouth is (on SR 125 East). I sure don't know where to find anywhere in Portsmouth.
I do know where Batavia is and the places in Batavia.
If we still lived in Mt Orab, or even Decatur, we would automatically go to Batavia. Seems the Social Security Administration does NOT consider Adams County as part of the Greater Cincinnati area, while Brown County is. This has made it interesting before. I just truck myself and my paperwork to Batavia at my convenience. If I get in early enough, I don't have to wait too long.

But first, I got notice from Adams County Jobs & Family Services. I am to report Monday to their jobs program (which has no jobs, but they are required by law to do the sign-ups, etc.) Didn't take them long to remove me from being a care-giver, although they have yet to acknowledge the prospective change in income.

Also got a medical card for Rex in the mail. We've never had one of those for him before. I kind of thought a little late, but as I have yet to be billed for anything, it's probably not too late. I think it's one of the changes for the disabled that has come with the Affordable Care Act.
At least I will have something to send when the bills come.
The brief letter with the card (sheet of paper) said nothing about the spendown, so I wonder if that's still in play or not.

I guess I'll find that out, too.

I do wonder what I will do when all this busyness is done. When there is nothing more to hurry up and wait for.

Something else to be found out.

Good Bye, my Love. Farewell

Yesterday, we said formal good-byes to my Rex.
I won't say final good-bye, because, for me, there is no finality. There's always a qualifier.
Until we meet again
In this lifetime

For others, who did not live with him daily or minute by minute, the farewell is more final. That's okay. Good-bye is not Gone Forever. They will have their own memories and cherished moments. There will be times when something reminds them of the time "Rex and I" did such-and-such . There will be times when they think I must call Rex, and then remember that they can't.
Over and over they may have heart-stopping moments like that.

I had thought at first to have a viewing, a visitation. I had found out that I could, and decided to do so.
But I woke in the night with Rex's thoughts in mine, and what he was saying was that he didn't want people staring at him.
That is so exactly what Rex would say, how he would feel, that I could not ignore it. There would be no staring at the empty body.

The service was another problem. Rex was rampantly anti-preacher. He'd want no part of a preaching.
How does one have a funeral without a preacher, or perhaps some trained motivational speaker or something?

One returns to the traditions of funeral speaking -- those who loved; those who knew the deceased. The fond farewell from loved ones.

My sisters spoke, for him, and our daughter's spouse.Together we worked on things to be said -- a brief bio of the man Rex was, and a speaking of how he lived.

There were two things important to me. Rex was not religious. As I said, he was against anything that smacked of preaching. But the way he lived his life was so Godly, in many ways ; so very Christian.
"Whatsoever you do to the least of my brothers, that you have done unto me."

Rex lived that.
It wasn't easy.
He agonized over issues; over should he or shouldn't he; over is it best.
Sometimes he shouldn't.
Sometimes it isn't best.

But it was the right thing to do.
So, however reluctantly, however unwisely, he would choose the right way of doing things.
Just because.

Already one daughter is following that example. (The other hasn't had much chance.)

Rex was no Christian as the world and the organized churches see Christian.
But he led a Christian life.
He had a Christ-like soul.

and there's nothing more to say.

Dying to Live, or Living to Die

I wonder if anyone of you realize how fast the end of this disease (COPD) can come upon you.
My husband went to hospital with pneumonia and an exacerbation because of it. He got worse, got better, got worse, got better. Then he tried to sit up unassisted in the bed and the doctor is saying, "This is end stage. Do you want kept alive by machine and stuck in a nursing facility, or not?" And, before we could even take that in, he crashed again and the goal was to keep him alive until his daughters came.
Of course, he lingered after that, even so still reluctant to leave us.

The point is, it all happened too quickly. We knew it would come, someday, and some day soon, and had discussed things in general -- health care directives and funeral 'plans' and such.
I urge you to get specific.
Do not make your loved one have to make the decision in the space of a few minutes or a couple hours.
Talk to your doctor about how it ends.
Talk to your family about how you want to end, and where.
Write it down somewhere.

Then go back to your business of living every day and enjoying every breath you take while you are taking it.

We all know that death is waiting for us. Those with chronic illnesses such as this know it more than the general population does. We know that we can have choices to make and there are choices our loved ones will have to make.
But do we want to put the burden of our decisions on their shoulders?

Know what you want, exactly, precisely.
Tell them what you want.
And now that this business of dying has been settled, go back to living.
.
Thoughtfully.
Gratefully.
Fully.

Empty Arms -- again

Every October this comes to mind, because the date was October 10, 1983.

Thirty years later, October 10, 2013, my husband was being hospitalized from pnuemonia, and went into respiratory distress.
He did not die that day.
But he did die.

And, again, mid October finds me with Empty Arms.

Empty Arms

Empty arms, empty arms                                         Months of waiting
Years of plans
And at the end:
Empty arms                                                                          

All alone, all alone
Always all alone
No one cares                                                    
No one shares
All alone

Little one, little one
Where have you gone?
A gift to me
A life to be
All gone

No one knows, no one knows
What you could have been
Should have been.
And I am all alone
With Empty arms.

All my dreams, all my dreams
All gone
Passed on
Leaving me alone
With empty arms

JUST Do Your Job

Another government shutdown looms.
Why?

Well, many will tell you it's the president's fault.
Or the Speaker's.
Or the guy who talked for hours without saying anything.
Or -- someone else.

First of all -- who cares? Fix it NOW, fix the blame later.

We elect people to govern this country.
And THAT is their job: to govern the country.

So what if the president doesn't agree with their plans and doesn't sign?
Don't they know that that is covered in their job description?
They have the power to do their job without the president's approval.

How?

By going ahead and doing their job.
 Again.
Day after day, hour by hour.
Just like you and I when we go to work (or went to work, in the days when employment existed.)

Had they been DOING THEIR JOB all along, things would not have got down to this -- again. They would have learned from the last debacle, and the one before that, and the one before that.
Instead, they are either placing blame or throwing their hands in the air saying "What's the use? It's not going to be signed anyway."

Presidential vetoes can be overrode by a united Congress that is doing its job. (Not signing IS a veto. A/k/a  a pocket veto.)


If these people worked in the private sector, they would have been fired after the last time this happened.
Many of these people have fired employees for less.

I think they should be fired.

Remember, when election time comes, that it's not their fault, it's someone else's, that they are NOT doing their jobs, and you -- Yes, YOU -- decide whether or not they get fired, or if you will allow them to give themselves a raise and blame it on the figurehead.

September

I love the autumn.

Not just the beauty of the color changing tree, of the land slowly baking under long days of slanting sun.

There's also the scents -- dry, dry, dry leaves, grains, grasses, weeds. The washed earth as the harvest is gleaned from the depths. The wood cuts and stacks for winter warmth.

I love the feel of the air on my skin. A lingering caress as warmth says a lingering farewell, with reminders that it will return -- someday.

I love the tastes of fresh produce, the good clean tangy taste that is in the air, not the mouth. (I'm not real crazy about the taste of pumpkin spiced everything that has become a cultural norm, but I like that it exists and is everywhere to remind me that it is again glorious Fall.

I like the sounds; the plop of fruit dropping from trees, the crisp crunch of leaves, the crickets drowning out the cicadas. (This is the first summer in my memory where I have ever sat on the porch and heard the crickets and cicadas together in concert.)

 I enjoy these other senses as I do wait for the visual changes. The sky is shading into that deep October blue shade, but the trees and plants are only just beginning to turn. For now they are yellow, brown, withering.


Will this be a Golden Autumn, with trees of gold and yellow and orange?
Will it be a flaming autumn, when the leaves are red and copper and magenta?

Will the green tarry a while, or will it vanish over night?

I can't wait to find out, and yet I must.

The season itself cannot be gathered until ripe.

Weekend

Pleasant surprise Friday evening when the babies were delivered to our door. We had been discussing it, and working at working it out, and then -- there they were!
On their way, Daddy had bought Hailey a pumpkin carving set and a kite, and these items were left at Mammaw's house.
So -- when Hailey got up Saturday morning, before she said "Good morning" or even "I'm awake, Mammaw!" she came to me and said, "We have to go get my pupmkin."
I fibbed. I told her the store wasn't open yet. The truth was, No one else in the house was awake yet, and I couldn't leave the baby to wake Rex up. (Tracy usually doesn't hear anyone on account of noise in her ears constantly, although she wasn't wearing her earbuds/headphones at the time.)

I didn't want to buy a pumpkin.
I sure as heck didn't want to carve a pumpkin. But the kit had stickers and that's what she said she wanted to do; put stickers on it.


Of course it didn't stop there.
When I told her she'd have to take the pumpkin home and let Daddy cut it, she went to Pappaw and he, silly man, told Tracy to do it, so it got done.
Badly, reluctantly, but done.

Then there was the kite. Numerous tantrums because she couldn't make it fly.
There was no wind.
No way it would fly and stay up, no matter how much she "runned and runned" with it.
Good job, Dad. Buy your kid a kite on a windless day and take her and it to ol' fat gramma's house. Good job.

Baby Boy was, for the most part, happy baby. He sat in his bouncer, his swing, and joy-of-joys, he would actually play on the floor instead of just flipping himself over and screaming. He's organizing getting himself to things and places and picking stuff up, so he's much happier.

We had the usual third-shift baby night Friday night, so I was groggy and short tempered most of Saturday (which started out with the pumpkin fiasco.)
Saturday, he was alert, talkative, communicated clearly -- a scream when someone leaves the room is pretty darned clear! -- went from person to person by his own choice. He surely does love his Pappaw who says "Tell me about it." to him and he at-ats and ya-yas away.
It was a nice day, and I took him outside on the quilt for going on a couple hours. He played and rolled and wiggled and squiggled himself all around. Finally getting up on all fours, although he's not quite figured out how to make everything move together. I had a heck of a time getting a picture, because the camera would go off and I had to turn it on and then frame the picture. BY then he'd be 'resting' again and I'd have to wait for the next time.

I do wonder if the outside time is why we had so many problems at bedtime, although he didn't show any symptoms. (Daddy has allergies, but Baby came with a cough and runny nose. Being outside seemed to ease that a bit.)
Saturday night we had a baby who wouldn't sleep, wouldn't settle. Wouldn't eat, wouldn't suck, didn't want held, didn't want put down. Finally decided he must be in pain and reluctantly gave him some baby ibuprofen, and he ended up sleeping through the night. Woke up around six for a diaper change and a refill, and back to snoozeland until almost ten. Two @4 hour sleeps in a row. I can rule the world today!

I had to take them home Sunday afternoon, and Hailey got up and started getting dressed and dressed up for the event. She's also making very sure that I plan to take Bubby home, too, and not just her.
She was  ready to go, and the situation was the same as yesterday -- she and I  the only ones awake.

She did get her kite "flied", and came in all sunshine and smiles.

Now, back to the sad, empty, and endless job of cleaning the house and the sadness of putting the toys away.
But not too "away." They WILL be back, and soon.

Hailey has already called and asked about "next time."
Warren yelled for "At-at Ya-ya"

Yeah, they'll be back. Soon.

Cooling Off

Cooling off seems to be the trend this week, after an uncomfortable start.

The weather started out hot and humid; a mini heat wave, the forecasters called it. We had two days with heat alerts or some sort of weather warning. Hot and humid making the 'humiture' three digits. It was nasty out, that's for sure. I usually open Rex's door for a couple hours every day, but not this week. We kept the door closed and that nasty stuff outside. We even turned his air conditioner up on high a time or two. At night, we could turn it on low fan.
Tomorrow we could be flirting with some light scattered frost notices, although nothing of the sort has been mentioned as yet. I just won'e be surprised if it happens. Two heat alerts and a frost advisory all in  the same week.
Yes, it must be September here in Ohio.

I had some disturbing mail earlier in the week -- see the previous blog entry. That, too, cooled off, and very nicely, too. Seems it was all a tempest in a teacup. One of those not-quite-AI-computers applied and rejected Rex for a program that the humans never applied him for, because he didn't qualify. I'm not sure why he doesn't, but since we've never had it, it's okay.
Makes me curious, but it's okay.
All that took was a phone call.

Tracy finalized her surgery dates; I got approval to get the medical tests I need; and Tammy got Hailey's birth certificate and turned it in to the school.

Done, and done, and done.
A satisfactory end to the week, and a reason to not dread the coming week. That's a good deal, any day.

Benefit Bafflement.

Got new letters today from the Department of Jobs (hahaha) and Family Services today. I thought it would be about cutting food benefits, since that has been big in the news lately.
I  was wrong. We get a ten dollar increase.
How did that happen?

Rex also got a letter from the same place. He gets other/different benefits because of his disabilty, so he occasionally gets his very own letters. He's the only one in the family with any type of medical coverage.
His letter says that they denied his Qualified Medical Beneficiary application. The reason given is that his income exceeds the program eligibility standards.

Now, the QMB has been covering the cost of his Medicare payments, and his drug program. (Medicare parts B and D). The cost for the Part B was in excess of $100 a month. We don't know about Part D, because he never had that before we had to go for help after I lost my job.

So, I go online to see if I'm correct about the QMB being that program, and find that yes, I am right. It is that program. Okay, so that means $100 less per month.
That must be why we get $10 more in food benefits!

But I read on, on the website/page that explains all this and the page clearly states that  the income level for him to qualify is @ $200 more than he gets.
So -- what the hell is going on?

It's after business hours today, so there's no finding out anything.

But it makes no sense to me.
Did someone have a bad day?
Did someone make a mistake?


Oh, and about my other problem I had with Medicare Part B -- I got a letter Saturday that explained they would only pay once a month for the drugs, no matter what the prescribed dosage, etc. Now they tell us, after we'd figured it out and resolved the issue.

On the whole, it is what it is. We can live (survive) on less money. We can manage with no health coverage. We can pay his insurances because he does need/use/benefit from them regularly. Nothing financial is fatal, although the health care issues could be. Any help we are grateful for.

But I really think there should be more explanation than what was given.

Stay tuned for the next dramatic act in "If it's Not One Thing, It's Another," a/k/a My Life.

Fading Out

Rex is down to 84 pounds. He is better but not doing as well as the doctor thinks he should be, and has given him a prescription for prednisone. He told Rex about all the drawbacks with the daily prednisone. the most concerning is that it can cause osteoporosis. Rex already has severe osteoporosis. Oh, yay, Rex gets to choose between working bones or working lungs, when neither is working as it is, and never will work correctly ever again. At least the prednisone gives him a little bit of an appetite.

And Tracy tells him to "Get well." Like that is ever going to happen.
And she starts yelling at me when I tell her so.
Why?
Because she doesn't want to think about it.
I guess I do. It's my favorite reflection, I guess. How much more miserable he will get, how much frailer he will become, etc.
I'm already watching him disappear, one pound at a time. If he stays at a pound a month, that's 85 months before he disappears completely. @ 8 years. Of course he will be gone long before 0 pounds.
I wish I could go first, but then no one would take care of him.
Why not?
Because they don't want to think about it.