Powerchair!

We just completed a very busy week, with two therapy re-evaluations (he passed!), one doctor's appointment, two regular therapy appointments, a meeting with lawyers to sign trust documents, and, last but not least, on Friday, Bob had a wheelchair evaluation for a motorized wheelchair!

This is the first time Bob has ever been in a powerchair. So, it was pretty exciting.

 I had to argue with Bob's neurologist to get this wheelchair eval, as the neuro doctor didn't think Bob was "capable" of operating a motorized wheelchair and wasn't going to sign an order. Jeepers. I mean, give the guy a break and let him, at least, try it before you decide he's "not capable" of handling it... grrr

I must admit, I had a bit of trepidation whether or not Bob could handle it, too. But my concern was mainly about his vision difficulties, i.e. would he be running into walls?

So the Rehab Specialist brought a demo powerchair with two sets of controls, one on the left arm for Bob to try and one on the back of the chair (called an "attendant control") for me to try out, in case Bob couldn't handle it.

 Well, Bob surprised us all, by taking off in the thing and, much to the therapists chagrin, speeding away down the hallway! Causing both therapists to chase after him! Ha! Then, when they asked him to turn left, back to the main therapy room, Bob zoomed away again and ended up in the kitchen!

I could tell, Bob was loving it.

Though he was hugging the wall a little too close.


After Bob tried it out, they had me take up the attendant control. When I tried my hand at it, I immediately about ran him into a wall! Ga! I felt like such an idiot, but the attendant control works like a joystick and you're operating it from behind the wheelchair without a clear view where you are headed, especially for someone who is short like me--- also the control was hyper-sensitive, I mean, one light touch and the thing just bolted off. Bob's regular PT then asked if he could try it, and I was relieved that he had the same difficulty I had, so I didn't feel so stupid, after all. The Rehab Specialist said the control could be "powered down" and "programmed" differently (yes, the thing has a built-in computer).

But, basically, Bob proved us all wrong and actually controlled the thing better than me or the PT!


And can you believe this? This powerchair costs about $25,000. And that's before adding options... Which will make our 20% co-pay around the $5,000 mark. Jeepers. We would have never been able to afford it, before this settlement.

This powerchair also reclines, tilts back, and the robotic footrests raise and lower all with a touch of a button...

And right now, the PT and Rehab Specialists are filing the paperwork with the insurance company. Fingers crossed!

Synchronicity or Coincidence?

Well, it's been a busy couple of weeks with another busy week ahead. Lots of paperwork/legal documents to read and sign and ask questions about, on top of Bob's 4-6 sessions/week of therapy and the usual doctors' appointments/pharmacy runs and screwed up medical bills/insurance to deal with. My mind is reeling, and I tell you, sometimes I just can't think straight. And all this when we don't yet have a single dime from the settlement. I can only imagine how scatterbrained I will be when things really start to move!

This week, I'll be going back to look at a house on the market. This will the be the third look at it, and this time I'm meeting a contractor there. The one thing I love about this 1929 Colonial Revival is it has a great floor plan for wheelchair accessibility, i.e. single story with wide doors/archways, large rooms and a hallway twice as wide as ours. There is also a second bathroom which could be, I think, easily enlarged and modified for a wheelchair accessible tub. The main concern is that the property needs a lot of other work, I'm talking general repairs/paint/electrical/landscaping on top of any modifications for the wheelchair and so, I'm hoping to get a contractors "guesstimate" on how much it will cost to put the house back together before I even think about putting an offer out there.

This past week, I had a long talk with Bob (well, "talk" as best we can) about The Green Machine, and Bob agreed that we should probably sell her, as long she goes to a classic car enthusiast who will restore her to her former glory and give her a well deserved retirement, i.e. take her to parades and classic car shows.

The other day, there was a knock on our front door. At least I think there was a knock.  As I didn't hear a knock, in fact, Boomer didn't even hear a knock, it was Bob who alerted me to the fact someone was at the door. When I opened the door, there was a guy, about my age, with longish gray hair writing something on a business card, on our front porch.

I asked him if I could help him.

He said, "Oh, Hi! Is that your car for sale, back there?"

I'm thinking, huh? Because there is no "for sale" sign on our car. I tell him that it's not for sale, but also tell him I might be selling it in a few months. We talk about the car a bit and he gives me his card, tells me that the car would actually be for a friend who loves old Darts and has been looking for one to restore. Then he tells me that he buys old houses, restores them and rents them out, and mentions a couple of houses that  he owns nearby on a street I'm well familiar with and the type of work he does. How strange, I tell him that we may be selling this house in the near future too. He shakes my hand, tells me to keep his card and call him when the time comes, as he's interested in buying both our car and our house!

I tell you, is that weird or what?

And what's even weirder, is this is the third time, this month, that someone has approached me about buying our car....

The Secret to a Long, Happy Marriage -- According to Bob

This week, the therapist asked Bob how long we have been married. Bob, who couldn't find the words, held up his hand. Five fingers. Then he closed his hand, opened it, closed it, opened it, closed it and opened it again. That's four times five fingers = 20.

And you know, he was right. It will be 20 years this September. (Hard to believe, but true!)

Then the therapist asked Bob, "What's your secret?"

Bob said, "Secret?"

ST: Yes, the secret, Bob, what's the secret of a long, happy marriage?

Bob: I know!

ST: Well, tell me! I want to know, too. Lots of people would like to know.

Bob (turns to me, touches me on the cheek, looks me in the eye) says: "I...love...YOU!" Then, he turns to the therapist and says, "See?!"

The speech therapist got tears in her eyes and said, "Bob, you're making me cry!"

I tell you, I suddenly had tears in my eyes, too.


And I know, despite everything else, how very blessed we are...

Setting Up A Trust

These past few weeks, I've been kept busy with paperwork and making multiple decisions regarding Bob's soon-to-be trust fund.

It's a lot to wrap my brain around.

Now, initially, and following our trial attorney's advice, my thought was to deposit the annuity money into a Special Needs Trust (SNT) for Bob's "care and comfort". In fact, I was ready to sign on the dotted line until a meeting (last month) with the trust attorneys and the settlement consultant threw me for a loop. Turns out an SNT is more complicated than it looks, with all these weird rules and regulations, some of which don't make a lick of sense.

For example, the SNT is supposed to provide money for Bob's "care and comfort" but it will NOT pay the electric bill, or the water bill, or the mortgage payment. It will however pay for the cable TV and it will pay for a down payment on a house. Oh-kay. Does this make sense? And it will pay for Boomer and Ripley and Zenith's vet bills. But it will NOT pay for health insurance for Bob's wife (ie. me)....  Huh?  It also will NOT pay property taxes or property insurance or even food. BUT it would pay to throw a huge party for 500 people for Bob's enjoyment!

All righty...

Basically, all these rules and regulations are set forth by, you guessed it, the federal government and therefore, an SNT will not pay for any "basic shelter-related expenses" and it will not pay for "food" (unless of course you're throwing a party) and it will not pay for anything that is "primarily for the benefit of another person" (i.e: me). And you know, the government knows best and is always looking out for our best interest...

Anyway! The trust attorneys were trying to tell me that this was the best route to go, that in order to get around some of these rules, the trust could pay me a salary for being Bob's primary caregiver (it will pay for a caregiver) and then I could use this salary to pay for things like electric/water/sewer bills and property taxes and house insurance and health insurance for me, plus anything else I needed like clothes and such. AND, they tell me, THE GOOD NEWS IS UNDER THIS TYPE OF TRUST FUND: YOU CAN KEEP RECEIVING FOOD STAMPS!!!

Huh?

AND, NOT ONLY THAT, BUT BOB CAN KEEP HIS CREEPY SHARE-OF-COST MEDICAID! (which, by the way, hasn't paid a dime for anything all the while he's had that.)

I am, of course, shocked and dumbfounded at this point and think the whole thing is completely ridiculous -- and I tell the trust attorneys and the settlement consultant that I need to think about this before signing on the dotted line.

And I spent a lot of time thinking, researching, and pulling out my hair, but figured out that if I took a salary out of the trust fund it would probably disqualify us from food stamps and creepy share-of-cost medicaid anyway, and then had a long talk with our trial attorney's wonderful assistant -- who was also dumbfounded. She makes a few calls to some other trust attorneys, then she meets with the settlement consultant and contacts our trust attorney and finally, after multiple calls/meetings, comes up with a solution of another type of trust fund called a "Trigger Trust" which is still protected like a special needs trust but without all the really stupid government regulations, and it can be converted into an SNT if Bob ever needed it, i.e.:  say I got hit by a bus and Bob ended up in a nursing home... And I can cancel the food stamps! So, phew!

Next, I had to pick a "trustee".  Which I finally did, after interviews, then research and calling references, etc. I decided to go with a small local agency instead of a large national corporation, just for the more "hands-on" help, especially at the beginning. Besides, I don't really trust large, national corporations...

Then, I was told by the settlement consultant that I had to decide on a monthly budget amount, which would be the amount the trust would automatically deposit into our checking account each month for basic expenses. This was no easy task. I mean, you're looking at a woman who has spent the last four years being extremely frugal. And, even then, our current monthly "budget" leaves us $200 in the hole at the end of the month (thank god for credit cards) and I do frugal things like, I hate to say, re-use Depends and bleach out and re-use catheter bags.  So trying to figure out how much money we will need living a more normal lifestyle was really daunting. But I finally came up with a number that I thought would work, and then when I told the settlement consultant, he advised me to ask for more!  I did take the settlement consultant's advice on this one, as "you can always amend it to less in the future if you find you really don't need it"...

All this has been keeping me busy-busy-busy. Add to that, Bob's therapy and doctor's appointments and all the usual caregiving stuff, I've been more than the usual stressed out. And there is still more to do, such as figuring out "trust fund language" and signing "releases" and etc.

It's actually been a relief to have this holiday weekend with no appointments or meetings or new decisions to make!

  

Some Serious Post-Botox Stretching

On Monday, Bob got Botox injections in his neck, shoulders and hamstring. This was followed on Tuesday by some aggressive PT on his neck muscles, shoulders and hamstring muscles.

And we were back again on Wednesday for more of the same.  It is a very painful process for Bob, but the PT says his neck is much easier to manipulate after the Botox.

And, yes, that's Bob's foot on the PT's shoulder stretching out his hamstring. Ouch.  And make that a "double" ouch, this last ouch for me as we will back again tomorrow and that means four days in a row of me pushing Bob six blocks to PT and back home again!