Friday, November 27, 2015


I started to write all the sordid details about what’s been going on the last 10 days but it wasn’t making for a particularly coherent story.

Rather, it felt frantic, disjointed, and, frankly, like a ginormous, vomitous purge of anxiety and angst.

So I’m starting over with this:

After a hospital and rehab stay that lasted exactly 4 weeks, my father is, once again, back at rehab - a different facility this time - after precisely 1 week at home and another 5-day hospital stay.

He didn’t fall.

This latest adventure, instead, includes:
  • Rectal bleeding
  • Fecal incontinence
  • Radiation proctitis
  • Colonic polyps

That’s why he was back in the hospital - for a colonoscopy he couldn’t prep for at home without a lot of support.

Turns out, radiation therapy for prostate cancer has some lovely side effects...even 18 months after treatment ends.

All but the polyps were a direct result of 45 radiation treatments to an area adjacent to the rectum. The polyps? Who knows? Except to say my paternal grandmother died of renal failure due to colon cancer and genetics run strong when it comes to cancer. (Get your colonoscopies, Kinfolk.)

He’s back at rehab because, after spending a few days sitting on his bum in the hospital, he’d regressed, losing pretty much all the strength he’d gained during the first rehab stay, his feet swollen to epic proportions because of his severe edema exacerbated by not keeping his feet elevated above his heart. On the day he was to discharge (Monday), he was unable to stand without significant help and completely unable to walk - even with the walker and with human support.

PT and OT evaluated him and recommended rehab.

Back to square one.


This time? We’re in a major living situation and financial crisis.

The bleeding, the proctitis, the polyps, all of that was rectified during the colonoscopy.

But the incontinence - both bladder and bowel - is uncontrolled and uncontrollable.

Nothing to be done. Except, I suppose, to force him to sit on the pot. Permanently.

I was so mad at him!!!

On Monday, the day he was supposed to discharge, the doctor instructed me to be there at 8:30 a.m. to go over discharge orders before taking him home. I was there 5 minutes early, impatient to get through the process, get him home, get him settled, and get on with my own life - a life in which I get to tuck the thought of him away into the recesses of my brain so I can attend to more pressing (and pleasurable) matters.

When he said he had to go to the bathroom and I watched as the nurse attempted to get him up to walk to the restroom 15 steps away and he couldn’t do it, I was seething. I’d told him several days before to do the exercises his physical therapist had given him at rehab - the exercises he could do in a chair on his own - so he wouldn’t lose all the progress he’d made. He’d clearly not done them.

I’m ashamed to admit I was curt, sarcastic, passive-agressive, snide.

When the occupational therapist came in and told him he needed rehab or around the clock care, he said he wasn’t going back to rehab. Period. No way. No how. 24-hour care it was to be.

I lost my shit.

I yelled at him. “How are you going to pay for that, Dad? There is NO money. None. And I can’t take care of you full time.”

He waved his hand at me as if to shoo me away. “I’ll figure it out,” he said.

“NO! DAD! There is nothing to figure out. You have NO money. None. The $5,000 you’ve got in savings won’t last you 5 minutes with 24-hour care!”

I sat there for 6 hours, fuming, waiting, as one by one, the occupational therapist, the physical therapist, the case manager, the doctor all came in to say one thing, “rehab”.

You think?

I went home.
I started to panic.

Here’s the thing...he isn’t independent anymore. The bladder and bowel incontinence requires him to have assistance...possibly beyond assisted living.

Diapers, adult ones, are an indication that a nursing home may be in order.

And I wasn’t lying about the money.

He doesn’t have any. And neither do I really.

I mean, I live pretty comfortably. I have a house and a brand new car (that I haven’t started paying on yet but, when I do, yowch squared to my expendable income). But I am by no means prepared to hand over an extra $1,000, $2,000, $3,000 a month toward skilled nursing care for anyone - not even myself. A fact that scares me, knowing my own impending long term care is potentially looming, knowing there is no daughter or son to take care of me when I can no longer care for myself.

My mom says, “Well, just get him on Medicaid! Problem solved.”

No, Mom. I love you but problem is not solved.

Medicaid is designed for the indigent. The poor.

The Affordable Care Act has helped to loosen the qualifications for Medicaid but not much. And, because my dad was never much of a saver or believer in investing in property, but a decent wage earner, he is stuck in an untenable position.

He brings in too much from social security to qualify for government assistance but too little to pay for the care he needs...which is a lot...of care and money.

He has no property to leverage. No car. No house.

Nothing but the clothes on his back.

Even his personal effects - a few sticks of furniture and some books he’s never read - amount to...little more than nothing.

He’s saved every nail, every bolt, every screw he could get his hands on over the course of 77 years. He’s saved canceled checks from his mother’s checking account from 45 years ago and my Great-Aunt Lue’s ledger book and last couple of tax returns. But dollars and cents? Not so much.

There is a way to get him on Medicaid which would pay for both diapers and skilled a nursing home. Oy vey.

It’s called a Miller Trust.

And I’m working on it. But it requires the help of an attorney.


Because yeah. Of course it requires an attorney...who costs money. And time I don’t really have.

But money is not the point of this post.

Although money is driving a significant section of this Anxiety Road I’m on toward Panic City.

He finally agreed to rehab - as long as it wasn’t the “HELL” rehab he’d been in a week before.

I found him a new rehab that his insurance would pay for (Medicare Advantage Plan C...don’t do it!!! Pay the extra for Medicare straight out if you can). It’s better there. At least, I think. So far.

On his first day there, Tuesday afternoon, he and I were talking. I met him there about the time he arrived so I could help him, if necessary, sign paperwork.

He told me how, before he’d come to rehab that day, he’d been sitting there in the chair at the hospital and, all of a sudden, without warning, he’d pooped himself.

No time to call for help.

No time to do anything but sit there and let it happen.

And something inside me just...broke.

I burst into tears.

I sobbed, “Daddy? That’s not rehab kind of stuff. That’s not assisted living kind of stuff. That’s...that’s nursing home kind of stuff.”

He looked at me, tears in his eyes, and whispered, “I couldn’t help it.”

And I’m so devastated.

Because he knows.

I don’t know what to do.



Sew, Sew Much said...

You're on the right path, Jane. It just sucks dirty donkey balls.

Joel said...

Dammit. Your blog made me cry. I don't have to deal with this in a personal level yet but I'm familiar with your situation professionally.
Your blog made me cry but its wrong about a few things. If you'll allow me...

First, incontinence is not a long term care indicator though many in LTC are incontinent. Assisted living communities struggle to keep their communities full. Incontinence is something many don't want to deal with but its by no means a deal breaker. If he was playing with his poop it would be a different story but the fact he wanted help and would have asked if he had time is a different story. We have many incontinent residents and many wear depends. There is no shame. Shit to speak. Call Tia. We might be able to help.

Second. We have a few residents who use that Trust, one has millions but uses medicaid. Colorado is one of a couple states that still allow it. It is abused badly and is the cause of many ulcers in marketing directors everywhere. It's designed for folks in your situation and is a life saver and I'm glad you found a possible solution but don't mention it unless you have to.

Did I mention incontinence isn't the end of the world?

Communities need cash and unfortunately, the bottom line matters. So start calling medicaid communities today. Offer everything you have for as long as you can. Private pay spend downs to medicaid conversion would go a long way to getting your dad into a good assisted living community and would help them admit someone needing a higher level of care.

You're in a hellish situation but it is not the end of the world. Call Tia. I don't know if we can help but she's knowledgeable and is a voice of hope.

Here for you my friend...

Joel said...
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Joel said...
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harada57 said...
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