October 11, 2011

Moving Through

I'm in the process of trying to upload a video of Bones onto Youtube so I can link it and you all can see this monologue that makes me laugh.

His monologue is due today, so yesterday I videotaped it on my phone and let him watch it until he got most of the little quirks out. In the beginning he was resistant to my taping him, but after the first when he saw little things he didn't like, he was more than eager. It's our fourth take and his favorite part is always the beginning when he's talking to me and 'getting in character'.

If all goes well and I can figure out wtf I'm doing, it'll be up this evening or tomorrow.

He has a vocal performance tonight, which of course means I'll cry. Anytime those little boys get up to sing I cry. Just hearing the voice of angels coming out of those mischievous bodies... gets me every time.


Joe leaves tomorrow. I have it all arranged. I've been working out the details with his niece over the course of the last four days.

This is what is bothering me greatly, as grounded and observant as I am, even I am surprised by where he is and what he is incapable of doing and I'm angry at the facility for not being forthcoming with the information and telling the family.

I get that he'll never walk unaided again. I called that one and told them 8 weeks ago, which is a good thing because nobody else did.

I get that he won't climb stairs or be able to live in his home the way it is now. Called that one too, I did.

No more driving? Got it, said it, it's cool.

The inability to dress himself... yeah, not only did I not see that coming, they didn't tell us. Nor did they tell us he'd probably never be able to get out of bed by himself, raise himself out of a chair... or... most importantly... change his own colostomy bag.

All of this takes assistance, the things he will no longer be able to do. And when I pressed yesterday why nobody told the family, I was told, "Nobody has a crystal ball... "

But the bottom line is... his insurance won't cover him anymore, someone has decided this is it, there is no more they can do here, and NOBODY ever called the family and said, "Look, we're 99% sure he's going to need assistance for the remaining years, you need to plan accordingly for the following."


And so now everyone is scrambling, in somewhat of a bind as he has not a dime to his name other than the SS that comes in every month. He has a home that now has to be sold along with 85 years worth of belongings.

And when he gets to NJ tomorrow, where is that assistance going to be coming from? For... the family did not truly understand his true state until last week.

I blame the facility for that. I'm there nearly every day, I'm eyes wide open, and even I didn't fully understand the magnitude.

Should be interesting...

Last night's gym run comes courtesy of Berlin. Love the '80s music.

Just a little FYI, if you're running or walking and your hips hurt so bad in the morning you struggle to get out of bed or your knees start to feel like the tin man with bad ache, you might need new shoes.

Just sayin'...

Quick little prayer that my Tech Lead got the job... life will be better for me if he gets it. Stress is stress... I'm in the middle of it all with work, but the green would be nice.

Posted by Boudicca at October 11, 2011 06:06 AM

One word: Photobucket. I download content from my iphone to my computer (I can download directly from the phone but it takes a loooooong time.) then to photobucket. One click to copy the embed code, paste in my blog and voila: video. That's how I did the Jack frisbee videos. Easy and free. Two of my favorite things.

Joe. I feel for you and Joe. My only suggestion is that when his 85 years worth of stuff is liquidated (Breaking my heart as a man and a magpie... as the pics of my office will show) make sure any military and antique items are appraised before letting them go. most people would be surprised at the value of small, seemingly worthless items. Case in point, I have a 1930's evans cigarette lighter I paid 2 bucks for... It's worth 35-40 and all I did was add a flint. People in a hurry get fleeced. Be careful.

Posted by: K-Nine at October 11, 2011 09:09 AM

The real people to blame for not knowing his true state is his family.

The facility can tell information only to family, and where has his family been all this time? In NJ, but I bet they have a phone that they could have called the facility and asked.

It sounds like the family doesn't really want him, the excuses for not being able to get him back to NJ were horrible. It's there freaking father for god sake. I shudder to think of the kind of care he will receive once he gets to NJ.

Posted by: Quality Weenie at October 11, 2011 11:34 AM

QW- NOt the case. They call every day. His niece calls sometimes four or five times a day, nurses, social workers, his doctors. She's very hands on. She's also spent thousands and thousands of dollars, of her own money, flying down here. They've all flown down once, a couple of them have flown down numerous times.

That's what's so frustrating... is all the times she has called... nobody ever once gave her an inkling that this was going on. They never told her ANYTHING. Nobody was forthcoming with any information.

I blame a few things. I blame the system and how nobody was ever quarterbacking his care. With every move, he got a new 'internist', who inherited his convoluted case. It was a mess. Then with every place he went, the staff had to play catch up. He changed insurances... that created more of an issue. He had an incompetent doctor. The social worker at this final place who should have been coordinating with this family from Day 1... never did. SHE is the one who really dropped the ball.

The family, who all work full time, did the best they could. It's not a father or a grandfather, it's an uncle. And their own mother has Parkinson's and their father is nearly crippled.

There is a lot on their plate already... tomorrow is going to be a ... ugly.

Posted by: Bou at October 11, 2011 04:44 PM


You all will be in our prayers.

Posted by: The Thomas at October 11, 2011 08:56 PM

Dear God in Heaven, what a disaster. I feel for the family in NJ. Joe is so blessed to have had you as his advocate in FL. I'll be praying for him and his NJ family tomorrow and in the future. God bless you Bou!

Posted by: Mary at October 11, 2011 09:23 PM

My mom is going through this for my dad now. He is permanently in a home now - cannot walk unaided at all - not with a walker, not at all. He is incontinent. He also is always trying to escape - wheeling his wheelchair to the entrance where there is a button high up on the wall that, if you press it, the door to the outside opens. My mother caught him hanging around there and asked him what he was doing. He said he was thinking about leaving, but thought better of it. She told him he couldn't reach the button, but he said, "oh yes I can.".

Anyway - now that he has to be permanently in a home, the fees are $8000.00 per month - this is in Central Florida south of Orlando where it isn't so expensive. His pension from teaching for over 30 years is a little over $3500.00/month and, in order for Medicaid to take up the slack of the rest of the monthly fee, my mother has to have only so much $ as income. She has had to spend on the house for improvements to get the $ amount down - and finally, we saw a "Financial Advisor" this past week who has tricks up his sleeve for "saving" the extra money that Medicaid doesn't allow. You can either invest it in an "Insurance Product" that will pay a monthly annuity and then, at the death of my mother, the rest of the money will go to the children - us. Or you can invest in real estate - what a great idea these days, eh? Or you can just plain write a check to each of your children and say they are "Caretakers" and this is their salary - except that you have to pay income tax as an employer on these fees. It's crazy.

Anyway - my mom chose the Insurance product. If it isn't a scam (we don't have that much money over the amount that Medicaid draws the line at anyway - so if we lose it, whatever....) we'll inherit something once my mother passes on. Meanwhile, Medicaid says "OK" and pays for the remaining monthly fees over his pension amount that the home costs.

What a three ring circus this all is. If we were millionaires, we could just hire a 24 hour nurse assistant to care for him all the time and he could live at home - and do whatever - the nurse asst. would be with him all the time, a live-in. But we're not millionaires - far from it. Both my parents were teachers for 30 years in NY State and have pensions based on their salary in the 70's and 80's when they retired.

My sister called tonight and said she talked to my mother - my dad has bad days and good days. The other day he had a bad day - he wanted to know where his mother was (dead since 1967) and if this was Saratoga Springs (where he grew up) and my mother explained that his mother was in heaven and that, no, this was not his home town. The next day he was much more lucid. Sigh. I hope I get hit by something so I don't get old.

Posted by: Suze at October 11, 2011 11:14 PM

I know this is just one little thing, but those recliner chairs that stand you up at the touch of a button, and those beds that sit up and down and change position. That way he doesn't have to feel like a prisoner if he sits or lies down.

Posted by: Heresolong at October 12, 2011 08:07 PM

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Posted by: nike free at October 12, 2011 10:39 PM