Progress!

Bob at the Parallel Bars

That's the good news here at The Pink House this week. Bob passed his first evaluation at Outpatient Rehab for Physical and Occupational Therapy. The evaluator was pleased with Bob's progress and another month of therapy sessions is being scheduled.

Bob was able to walk three times at the parallel bars on Friday with the evaluator, which is a big leap from the original three or four shaky steps, though as you can see on this picture, he is still leaning too far to the left and still requires two therapists to hold him up.

Bob at the Standing Machine

Bob also managed to handle 8 minutes in the standing machine. And he was able to hold his head up for the count of five.

I am pleased with these new therapists, especially Peter, who is one upbeat and positive thinking PT.  Peter told Bob that the goal is to be able to "walk over to that standing machine and stick your tongue out at it!"

I love it, and fingers crossed, he'll keep progressing.

DRAGON & Pencils

Last Christmas, my mom and dad bought Bob a set of colored art pencils. I had asked them to do this as I really wanted to get Bob back into his artwork. My mother, who is an artist in her own right, picked out a nice set that were a bit wider than the "normal" pencil, thinking they would be easier for Bob to hold in his left hand. She also bought him some professional art sketchbooks.

Since then, Bob has been drawing some incredible stuff. But try as I might, I could not get him to use any other color besides black... I guess he's just a "black and white" artist. And that one black pencil in the set was growing shorter and shorter...

Awhile back, I told my sister about Bob's penchant for using only the black pencil, and how that pencil was diminishing to a nub and she sent Bob this very cool set of Graphic Sketching pencils which contains 12 pencils, each in a different shade of black.

Of course, Bob was thrilled, but my formerly right-handed, now left-handed artist had some problems, at first, holding onto these pencils which are much thinner than the original one. I tried putting those foam "gripper" things on them, but that just seemed to make it worse...

But he tried, and alas, he finally got the hang of using the new thinner pencils. And now, he is drawing in all different shades of gray and black.

A second problem we encountered with the set is that the pencils are arranged, in order from light to dark, in a slim metal case, and each time Bob (who can only use one hand) tried to select a pencil--he ended up knocking the whole thing on the floor. And there I would be scooping up pencils and arranging them back in order. I finally put them all in a box.

The pencils themselves have numbers on them, but Bob either could not figure out what the numbers meant or just couldn't read them. Heck, I had trouble reading them because the numbers are really small. Bob insisted he wanted those pencils back in order "light to dark". So, I put on my "thinking cap" and came up with this solution:

using a thick rubber band to hold the pencils in place, which I thought was pretty clever--if I don't say so myself.


But enough about the pencils, what about this "Dragon" in the title of this post? Well, here it is. Bob's new drawing (and the first one using the new pencils) which he calls "Dragon":

DRAGON
by
Bob
(click to enlarge)

And, I think it's pretty darn cool!

Good News, Bad News

We went back to Outpatient Rehab on Friday. Physical Therapy was painful to watch. Again they got Bob up on the parallel bars, and again, he is leaning way too far to the left. I wish I had a video, but I don't, so I will try to describe the scene. Imagine this:

Bob has his left hand on the parallel bar. His left shoulder (which should be straight up from there) is hanging outside the parallel bar about 6-7 inches. As well as his head. From there, travel down his body, left leg stuck straight at an angle and his right affected leg, crooked and bent and sort of dragging. Two therapists hang onto his gait belt. One in front of him and one behind and they attempt to straighten him upright. But he's a Leaning Tower of Pisa, totally at an angle, trying to take steps, toe to heel, like walking on a tight rope. Like he's trying to climb up a wall. As he takes steps, his right leg begins to bounce uncontrollably up and down. Then his torso twists and his whole body is falling to the left. And the therapists yank him back into his wheelchair.

It's heartbreaking to watch.

They also tried to get him in the standing machine again, but the therapist who got him in it the last time wasn't there, and these two therapists could not figure out the machine. So no luck there either.

Occupational Therapy was worse. This new OT has a "push through the pain" attitude. His last OT was the opposite, stopping at any sign of discomfort. The new OT did range of motion on Bob's right paralyzed arm and, I tell you, Bob kept crying out "OW! OW!" but the therapist kept telling him "no pain, no gain" and admonishing him that if he did not do his range of motion, his arm would end up horribly deformed and even more painful. By the end of that session, poor Bob was in tears.

Honest to God, that was painful for me to watch, too. And I don't know what to do. I'm afraid if the OT continues with that therapy, Bob will not want to go back. And she wants me to do this stuff at home, and I don't know if I can bear to do it, if I can cause Bob that much pain...

All I can say is: oh dear.

(Big heavy sigh here.)

But I titled this post "Good News, Bad News" so here's the good part:

A Second Starbucks! And Not a Single Drop Spilled!

The Ghost in The Green Machine

Bubba says that all cars should have names. That a car with a name runs better and lasts longer than a car without a name. That a car with a name treats its owner right. And Bubba should know. He's been working on cars all his life. In his younger years, he worked at a Chrysler factor, actually building Dodge Darts like The Green Machine.

Bubba also says that all old cars are haunted...

The Green Machine came back to me this week. Bubba figured out the problem was a loose wire going to the amp gauge which melted against the metal frame of the car and, therefore, when the car warmed up, the wire got hot and pretty much sucked all the charge out of the battery and electrified the car itself. Or something like that. And that explains why I would be driving down the road and suddenly the car would just shut off, as if a ghostly hand had switched off the ignition.

But it doesn't quite explain this:

A couple of weeks ago, on a quiet Sunday morning, I had to make a quick run to the store eight blocks away. I got into The Green Machine and started her up, and as I reached for my sunglasses, she killed. I started her up again and when I went to reach for gear shift, she killed. Again, I started her up, again she killed. Four times this happened, at which point, I begin to freak out--because The Green Machine, for all her quirks, has never done this before.

So I went into the house and told Bob about the problem. Why, to this day, I even do this, is beyond comprehension. I guess I'm just used to Bob being the go to guy about cars and The Green Machine was his baby.

Anyway, I do this, I tell Bob how The Green Machine keeps killing every time I start her up.

And Bob says, "Kills?"

"Yes."

"Kills and kills?"

"Yes."

"Kills?"

"Yes."

"Kills and kills and kills?"

Well, all that was certainly a big help. By now, I am pretty flustered. But I really need to get to the store, just for one thing. Just to run into the store, grab one thing, and come back home. It will only take about 15 minutes.

I go back out to the car and open the hood and look inside. Not that I really understand everything I'm looking at, but nothing seems amiss. Then, because the hood is open and I've been meaning to do it, I check the oil. It's low. I get a quart of oil out the trunk and put it in.

Then I get in the car to try it again. She starts right up. And doesn't kill.

I'm a bit wary, but I start out for the store.

Keeping one foot on the gas and one foot on the brake at the first stoplight.

I turn onto 16th Street and I am the only car on the road. Ahead of me are 4 stoplights, all green.

Then it happens. Two green lights ahead of me. A gold car, coming from my right, whizzes right through the intersection. Must've been doing about 90. Just zoooooom through that intersection. Never even slowed down. I tell you, my heart nearly stopped.

I get to the store, a bit shaken. I shut off the car and look at my watch. I'm thinking, if I had gone to the store when I first got into The Green Machine... If The Green Machine hadn't kept killing... If I hadn't wasted about 15 minutes telling Bob about it, looking under the hood, etc... There's a good chance I would've been coming back from the store, going right through that very intersection when that gold car ran that red light.

A Ghost in The Green Machine?

And I think, The Green Machine maybe just saved my life...

Later on that day, I call Bubba whose been our mechanic for about 15 years. I tell him what happened. He tells me, quite seriously, that all old cars have ghosts. When I laugh at this idea, he tells that no way, it's the truth, it's a certified fact. And I am real lucky that The Green Machine's ghost is looking out for me.

Then, I tell him about the other problems I'd been having---the way the car just sometimes shuts off when I'm driving and also that every time I take my foot off the gas, the radio fades out.

He says, "Now that sounds like a wiring problem." Later that night, he came to get the car. He fixed those problems. But he never did figure out why The Green Machine kept killing that quiet Sunday morning. Except to say, it's a certified fact that all old cars have ghosts. That, and if a car has a name, it treats its owner right.

And, you know, if your car isn't old enough to have a ghost, and it doesn't yet have a name, well, you might want to think about giving her one. Because Bubba (at least when it comes to cars) is usually right.

Back in the Standing Machine

The Easystand 5000

We went back to Rehab for the second PT session on Friday and it does seem like we are starting from scratch as they put Bob back into a standing machine, though this one is way cooler than the standing machine at the other rehab center.

This standing machine is called The Easystand 5000, but I tell you, it was no easy feat getting Bob into it as it took two therapists to lift him, plus everything had to be adjusted for Bob's long legs. But once he was strapped in it, and adjusted, it worked like a charm.

I must say, it's quite a clever contraption! As you can see by this demo video. Because of the way the knees and back of the legs are supported, it actually got Bob up to his normal height.

I remember when Bob was in the standing machine at the other facility and he was just sort of hanging on it.

In this standing machine, I was amazed how tall Bob was and how it actually helped him stand straight, shoulders even, spine straight, legs straight. He managed to stand for 8 minutes and it seemed he actually rather enjoyed it.

He kept looking around and saying, "Wow" and "Remember?"

I can't remember the last time I saw him standing straight and tall. Or the last time I looked up at him while standing. (I'm 5'4", he's 6'3", so I was always looking up!) But now when we walk at the railing at home, Bob is so slouched over that he is about my height.

The therapists also got him on the parallel bars, where he took a few shaky steps. But they spent most of the time working on weight bearing and stretching his legs.

A big problem Bob's having is his left (good) leg has a contracted hamstring muscle and he is having difficulty pulling that leg straight, so when he stands his knee is slightly bent....

The therapists also asked me if Bob had an AFO (ankle foot orthotic) or any kind of leg brace for his right leg and were surprised when I told him that he did not. I had asked the female therapist at the last Rehab facility about a leg brace but she told me that an orthotic or brace was "so expensive" that "you wouldn't be able to afford it" plus she didn't think it would help... This was the same therapist who I always felt just did not want to work with Bob and who I had asked to be replaced, to no avail. That was the same therapist who lied at Bob's last session and discharged him without even checking the notes of the other therapists.  Click here for gory details. Well, these new therapists seem to think some type of brace or AFO will help get him on his feet. And I'm beginning to wonder if he shouldn't have had something like that all along.

I guess everyone has a different opinion. But I am glad we are going to a different facility this time. I am beginning to wish we had gone to this rehab center the first time around, as all the therapists so far have been just terrific. Unfortunately, they don't offer speech therapy which is why we ended up at the other place, the first time.

And hey, they have a much cooler standing machine!

A Heartbreaking PT Session

Yesterday, Bob had his first actual physical therapy session at the new Rehab facility. I tell you, it nearly broke my heart.

Last year, right before he was discharged from that Outpatient Rehab, Bob could walk ten times on those parallel bars.

Yesterday, he took four wobbly steps, both knees buckled and he nearly fell over.

Last year, before he was discharged, he was finally able to stand up from a sitting position.

Yesterday, it took three therapists to hoist him from the wheelchair.

So much that PT at the last Rehab Center who told me it "would be good for Bob to take a break from therapy".

Now, Bob can still get up from the wheelchair in our hallway without any help. And he can walk the rail in our hallway at least 15 times. Unfortunately, he leans heavily on the wall when he does this and at Rehab there is no wall by the parallel bars to lean on....

We go back for another session tomorrow. We'll see what happens.

But I tell you, it is hard to watch. And it feels like we're starting all over from scratch.

A Day in The Life of a Caregiver

The other day, someone asked me "Do you work?" It was all I could do to stop myself from laughing out loud. And it's not the first time someone has asked me that question.

Awhile back, someone else, knowing I am my husband's caregiver, innocently asked me, "What DO you do all day?"

So for the curious and/or the clueless, I thought I'd just write down a typical schedule, a day in my life as a caregiver. Here it is:

6-6:30 a.m.   

Wake up. Look at the clock. Try to compose myself for a new day. Get up. Get dressed.

6:30-7:00 a.m.       

Empty and rinse out the overnight urinal. Disconnect Bob's overnight feeding pump. Clean feeding tube with cannula brush. Flush tube with water. Crush morning medications and dissolve in water. Syringe into Bob's feeding tube. Flush with water. Change Bob's bedpad, boost him up in the bed, give him topical medication for his mouth. Feed the cats.

7:00-7:45 a.m. 

Walk the dog.

7:45-8:15 a.m.

Feed the dog. Boost Bob in bed. Sit down with Bob and tell him the day's agenda so he is prepared for it. Set Bob up with drawing pad and pencils. Take a bath.

8:30-9:00 a.m.

Breakfast for me.

9:00-10:15 a.m. 

Do dishes, clean kitchen, take out garbage, do any other household chores as needed, pay bills, schedule wheelchair transport rides, do any paperwork necessary, order medical supplies, order prescription refills and/or blog (if time!), check e-mail etc. On Saturdays, count and set up a week's worth of pills in Bob's "pill minder" boxes. 

10:15-10:30 a.m.

Eat lunch now. There will be no time later on!

10:30-11:30 a.m

Fold yesterday's laundry. Gather all supplies for Bob's bedbath and haul a tub of water into his room. Do a complete bedbath starting with his fingers and ending with his toes. (I wash, Bob dries what he can reach.) Apply 3 different topical medications and four different lotions. Clean belly opening of feeding tube and apply new gauze dressing. Help him get dressed except for t-shirt. Take off wheelchair arm and push in footrests. Pull wheelchair to bed. Help Bob transfer into the wheelchair. Flip back footrests and wait for him to get his feet positioned. Put arm back on wheelchair. Pull wheelchair diagonally to the bed.

11:30-11:40 a.m.

Tip wheelchair back onto bed. Do neck stretching exercises by holding Bob's head and gently moving his neck and applying "traction". Ten reps each of "chin to chest and up", "ear to shoulder" and "look left and right".  Then do 10 reps each isometric neck exercises, with Bob pushing his head back against my hand

11:40-12:30 p.m.

Push Bob's wheelchair into kitchen. Set up sink to wash his hair with rubber hose etc. Tip wheelchair back against the sink. Wash hair. Rinse hair. Set wheelchair back on floor. Hand Bob fresh towel to to dry off. Clean sink and put away hair washing supplies. Strip sheets on Bob's bed. Haul laundry into laundry room. Start up new load in the washer. Make bed with fresh sheet, drawsheets, bedpads. Comb Bob's hair and secure into ponytail. Give Bob his t-shirt, watch him struggle to get it on, help if needed. Push wheelchair out to front porch so Bob can get some fresh air.  Sit with him for a few minutes. Take a deep breath.

12:30-1:00 p.m.

Pull wheelchair backwards into house. Take off wheelchair arm. Flip in foot rests. Push wheelchair to side of bed. Get out slideboard and help Bob transfer back into bed, boost him up with drawsheet, move table back to side of the bed, adjust pillows, put wheelchair back together, then go to kitchen. Crush medications, dissolve in water. Check syringes to make sure they are working correctly. Syringe medications into Bob's feeding tube. Flush with water.

1:00-2:00 p.m.

Bob's PT exercises.
My job here is to keep count of the number of reps of those exercises he can do on his own and to manually help him with the ones he cannot do on his own. 10 different exercises.
Get Bob sitting at edge of bed. Four different trunk exercises, he needs help with all of these. Throw wash into the dryer.

2:00-2:30 p.m.

Boost Bob up to the top of the bed so that his head is hanging off the top for more neck stretching exercises plus position him for about 15 minutes of spine alignment and gentle traction. (Go check my e-mail etc. while he relaxes in the spine alignment position.)

Somewhere between
12:00-4:00 p.m.

Watch Bob try to pee! Then empty and rinse urinal when he's successful. Get frustrated when he takes way tooooo long and throws the schedule off... go check my e-mail etc. while I wait... aaargh.

3:00-4:00 p.m.

Take off wheelchair arm and take off footrests. Push to side of bed. Help Bob transfer into wheelchair and put wheelchair arm back on. Put Bob's shoes on. Put on his knee brace. Put on his fingerless left hand glove. Secure elbow pad. Put on gait belt. Push wheelchair into hallway for walking practice. Assist Bob with at least 15 walks on the rail, then as many "dance steps" for weight shifting as he can.

4:00-4:30 p.m.

Push wheelchair back into the living room. Take off Bob's shoes. Take off knee brace. Take off gait belt, glove and elbow pad. Take off wheelchair arm. Push wheelchair to side of bed, get out slideboard, help Bob transfer back into bed. Boost him up to the top with drawsheet. Adjust hospital bed rails and pull back bedside table, adjust pillows, help Bob undress and change into night clothes. Put wheelchair back together. Take the dog out to pee.

4:30-6:30 p.m.

Supper for me. Feed the dog. Serve Bob pudding and make sure he gets it all down.
Watch a movie.
(Best time of the day!)

6:30-7:15 p.m.

Crush and dissolve night medications. Syringe into feeding tube. Flush with water. Set up and connect night feeding pump. Take dog out, one last time.

7:15-9:00 p.m.

Finish watching movie. Get Bob ready for sleep, i.e. fetch night urinal, tuck him in.
Fall asleep, if I can or go play online Scrabble until I'm sleepy.


Somewhere between midnight and 6:00 a.m.
Climb out of bed and change diapers. Haul trash bag filled with dirty diapers and disposable bed wipes out to the garbage can. Do a midnight load of wash, if necessary.

After that,
fall back asleep.

So there you have it, a typical day in my life. And people ask if I work....

On Foot, Again

Just when I think things are settling down a bit, even looking up with Bob being accepted into Outpatient Rehab, just when I think we are getting ahead a bit, The Green Machine takes another dump.

Bubba picked her up on Tuesday. This time she's got some strange electrical problem. Imagine driving down the road, minding your own business, and bam! the whole car just shuts off. Almost as if an invisible hand has reached over and switched off the ignition. So you end up coasting to the side of the road, throw her in park and start her up again. She always starts up again. But I tell you, it's more than a little disconcerting.

On Tuesday, Bubba said "Let me have her for a couple of days." Well, here it is Friday and I doubt I'll see that car until next week, if I'm lucky. I swear, every time Bubba opens up the hood, he finds something else wrong. So far we've got a dead voltage meter and an ignition module which is "melted" (that's Bubba's word) and he still can't pinpoint the actual electrical problem.

He also told me The Green Machine is all "carbed up" and gave me a long long lecture about how crappy gasoline is now (especially the cheap stuff I've been buying) as they add ethanol and how that pretty much eats away at engines and he made me swear on a stack of Bibles that from now on I will only fill-er-up at Shell with premium gas, which Bubba says is the best on the market because it has some kind of additive in it....

And all this happened on top of having computer problems. The Verizon technicians have been out to the house twice this week, because I could not connect to the internet. I think that problem is now corrected. Knock on wood.

Oh, what next?

I don't even want to know...

I am frazzled....

First PT Appointment

Yesterday, Bob and I went to Outpatient Rehab for his evaluation appointment with a Physical Therapist.

The Rehab Center is located six blocks from our home, so I figured we'd save the wheelchair transport money and hoof it on foot. Which means, I pushed him six blocks in 90+ degree heat. I tell you, I got a workout and was drenched with sweat when we arrived.

Unfortunately, I had to spend 45 minutes of the appointment filling out eight pages of "patient history" forms, i.e. every single hospitalization, surgery dates, doctor's names and phone numbers, medications, etc. etc. I don't ever remember filling out such a detailed form, even at a doctor's office. Once that was done, we had only 20 minutes with the Physical Therapist.

The PT spent most of that time asking questions about how much and what kind of therapy Bob had received in the past. Then she said that because Bob had had "so much" therapy, she doubted the insurance would pay for much more.

She did measure the angle and drop of Bob's head. She also had Bob move his legs and feet the best he could and made notes. Finally, she got him up to the parallel bars where she had him stand up. But then she stood smack dab in front of him, with one foot between Bob's feet and both her hands on his gait belt and asked Bob to take a step. He didn't. He couldn't. She was, um, sort of in his way. And I don't think he knew what to do.  I also noticed he was very unsteady, leaning way too far to the left.

Anyway, she's going to set up two appointments a week for a month. But she doesn't think the insurance will pay for more than that...

I ask you, when did our health care system become all about the insurance---instead of the patient's needs?