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Sunday, July 31, 2011

Welcome To The Pink House Rehabilitation Center

Our newly opened one-bed, not-for-profit, inpatient facility is located in the historic Pink House on the Corner, a Craftsman Bungalow built in 1922. Among the many charming features of this unique facility, you will find homey touches such as cat hair collecting in the corners and a fine coating of  baby powder covering every possible surface as we are too busy working on our therapies and really don’t have time for housework.

We are an exclusive facility catering to but one special patient which is Bob, you lucky dog, you.

Our highly untrained, unlicensed staff includes myself as  serving as Chief PT/ST/OT as well as nurse, nutritionist, aide and companion. All I can say, it is a good thing I have sat through countless therapy sessions, so that I have a clue as to what the heck I’m doing.

Our daily therapy sessions include approximately one hour each of the following therapies:

Speech/Swallow Therapy – to include identifying objects and flashcard work,  sentence completion and “matching pairs” work. Also, tongue exercises and vocal exercises (i.e. the famous “UNGA, INGA, KAN-GA-ROO!” which we shout at the top of our lungs causing any passerbys to look twice at the Pink House and wonder what sort of demented people live there). A cup of pudding or mashed pototoes will be offered for daily swallowing practice.

Physical Therapy – leg exercises followed by several trips down our newly installed rail in the hallway.  Our record, thus far, is nine trips on the rail!

Occupational Therapy – including Mirror Therapy, range of motion exercises (which our patient hates, but will be forced to do) followed by writing and reading practice or maybe a few hands of “Go Fish”.

Our therapy will take place six days a week, when possible, that is, unless Bob has a doctor’s appointment or is intent on spending the whole day peeing. On the seventh day, we play Scrabble.

Meals at our facility include three nutritious and delicious cans of  the highest quality Jevity 1.5 daily, administered by gravity feed (the gentle way, as to not upset the tummy) followed by a 12 hour Jevity feeding via enteral pump each night.

Nightly entertainment is offered with a selection of movie DVDs loaned from our public library.

In addition to myself, we have a highly motivated and unqualified staff of part-time therapists, who include:

Boomer, our Speech Therapist assistant, whose chief duty involves barking incessantly out the window at nothing which thus causes our patient to scream: SHUT UP! at the top of his lungs. This ongoing therapy is great for exercising the vocal cords and stretching those mouth muscles and limbering up the tonque.

Zenith provides our staff with diversity, being the only Siamese. She’s our Massage Therapist, though she prefers to get massages rather than give them. Her hours are erratic, pretty much when she wants too. She has a tendency to sleep on the job.

Ripley is our Recreational Therapist. He specializes in Play Therapy. He also does double-duty as a Physical Therapist as he will attack our patient’s toes causing our patient to then have to exercise both leg and arm muscles in an effort to swat him away. Ripley will also sleep with our patient, providing Comfort Therpy, but only if our patient promises not to pee on him. If bedwetting is the order of the night, you will find Ripley snuggled up with the owner/operator of this facility, whose bed is known to be dry.

So there you have it. Plan C is in action.

Friday, July 29, 2011

To My Father

My Father
July 29th is my Dad's birthday. I want to take a minute to say a few words about someone so special to me.

My father taught me a lot things. He taught me that action speaks louder than words and how to scour other people’s trash for treasures, and how to play kickball—the latter when I came home from school in tears because I was picked last for the kickball team. That summer, he practiced with me every evening after work using hula hoops for bases and so that fall when I returned to school, I was picked not last, but second. But most importantly, he taught me that it didn’t matter what “side of the tracks” you were from, but what kind of person you were inside.

From my Dad, I inherited my freckles, a passion for politics, a love of antiques and a tendency to worry too much about everything. And, I hope, I inherited his compassion and kindness.

He's the kind of guy who sings to the family cat. Who dances in the kitchen in his underwear. Who will trap a pesky rodent and take it to the park to let it go instead of killing it. Who once helped me rescue and raise three baby rabbits after their mother was killed by an irate gardener. Who says "How Do?" instead of "Hello".

My father always served his fellowman, first in the Korean War, and again as a leader in his local union.

The winter of my divorce, he showed up on my doorstep with a fresh cut Christmas tree and, against all my protests, erected it in my living room.

When Bob and I married, he accepted Bob as if he was his own son. And during our first year of marriage, when Bob had some family trouble and began drinking too much, it was my father who told me that if I truly loved him, I wouldn't leave, but help him through it and things would get better. And he was right.

My father always wanted a son, but had two daughters instead. My mother gave me my father’s name as my middle name, so I am, in a way, his proud namesake.

My father is my biggest fan. The year I ran for political office, yard signs sprouted in his manicured lawn and he attended every event, standing in the back, shaking hands and telling everyone “that’s my daughter.” When my first book was published, he visited every local bookstore to make sure they had a copy and to make sure it was displayed up front. And he reads my blog daily. When I first started blogging, my Dad called me up and told me that my blog had “80 hits!” but not to get too excited because about 60 of those were from him.

And my father (and mom, too) has been there for me and Bob. I don't know what I would have done without their constant support both emotionally and financially since Bob's stroke. I honestly don't know how I would have made it this far. 

So, Dad, I know you’re reading this! Have a Happy Birthday. I love you so much. I hope I haven't embarrassed you.

And folks, if you are reading this in the next few days, please wish him a happy birthday in the comment section. His name is Les. (My middle name is Leslie.) And I would love to make his day.

Wednesday, July 27, 2011

Clogged Peg Tube, ER & Hot Coffee

On Monday, after I posted on my blog, I went to prepare Bob's morning meds. I crushed his pills and dissolved them in water and then, the first thing you do before giving him his meds is flush his feeding tube with water. So, I've got the syringe full of water in his peg tube and lo and behold, nothing happens. The tube is clogged. First, I check the clamp, because sometimes his clamp sticks, but it's not the clamp. Then I get another syringe, because weird as it seems, syringes do wear out and get stuck, but a new syringe doesn't work either. So I get out the Coca Cola, which is trick shown to me by one of the nurses in the hospital. Coca Cola never fails to unclog Bob's tube, at least it never failed before, but this time the Coke gets part way down the tube and then back blows--causing the second port on his tube to blow open and I end up with a face full of soda. So, then I massage the tube, trying to squeeze out whatever is clogging it and try again and end up with another face full of Coke. I try this three more times and by then, I am drenched and the bed is drenched and poor Bob is drenched with soda. So I figure we need an expert and maybe a tube replacement, so I get Bob dressed and in the wheelchair and off we go to the emergency ward.

We get to the hospital and there's only one other person in the ER waiting room, so I'm thinking it shouldn't take too long to see a doctor. As we wait, three other people come in, two of which I overhear their ailments (a guy with a spider bite he's had since last Thursday and a woman who was having break-through menstrual bleeding for over a month) and everyone is called in before Bob. And I ask the receptionist when Bob will get to see the doctor, and she tells me they take in patients based on triage--so the more serious cases get in first. So we sit. For two hours. Then, we finally get into a room. Where we sit for another hour and 45 minutes before a doctor comes in.

I don't know what's with doctors these days, but it seems darn hard to find a doctor with compassion. Of all the countless doctors that Bob has seen, I can count the compassionate ones on one hand. This one's no different. The first thing she does is tell me that I should have not brought Bob to emergency, that a clogged tube is not an emergency and I should have made an appointment to see his regular doctor about this because I am wasting her precious time. And I'm thinking that Bob's regular doctor is only in on Tuesday and Thursday afternoons and there's no way in hell I was going to let him go 24 hours or more with no food, water or medications and I tell her as much, but she huffs off and says the nurse will take care this because she doesn't have the time....

So the nurse comes in (she's OK, she's cool) and asks if I've tried Coca Cola? And if I've massaged his tube? And did I check the clamp? (Yes to all of those.) She's not sure what to do other than that, so goes to consult "an expert".  She comes back and asks if I've tried hot coffee? Hot coffee? Never thought of that one. So, she goes and gets a cup of hot coffee and a syringe. She syringes the hot coffee into Bob's tube and it blows back in her face. I nearly laugh out loud because it's the same thing that happened to me, but at least Coke is isn't hot. So, then she tries pouring the coffee directly into the tube and actually manages to get a bit in there and caps it off and says, "let's let it sit for awhile."

And do you know? That actually worked. Learn something new every day. Although it took three tries, then the coffee got cold so the nurse tried just hot water. She massaged the tube and the end cap came right off at which she said oh shit, then laughed because she thought she broke the thing but realized it does indeed come off (which I didn't know either). We finally got home around 3:00 p.m. but Bob's tube is clear now and I learned a few new tricks, although it was a rather expensive way to learn.

But I still don't understand why a five-day-old spider bite and a messed up menstrual cycle are "emergencies" and a clogged peg tube is not. I suppose I should've taken him to a Walk-In Clinic instead, but that would've meant a trip in the car (wheelchair transport requires a 24-hour advance reservation) and that's difficult enough without Bob being in pain without his morning medications and the hospital is only three blocks away and we walked there. On our way out of the ER, the nurse gave us discharge papers which informed me to "come back to our facility if tube clogs again" and here I thought I wasn't supposed to bring him there....

On a better note, Bob was much more motivated yesterday and I managed to get him up and walk the rail six times. Pretty soon, I'll have this at-home therapy thing figured out. Although I still have a couple pieces of furniture to move out of the way.....

Monday, July 25, 2011

Feeling Rather Frustrated

Well, that's the understatement of this blog. I'm actually very frustrated. Cracking up, if you will.

It's been a tough weekend and a rough week or so, trying to get our house in order for Bob's therapies. First, putting the rail up and that entailed moving furniture around--by myself. No small feat. But I did it.

The problem was that when Bob came home from the hospital, I had to find room for his hospital bed, so I decided to put that in the parlor/living room because it's the largest room and also the room with the window air conditioner and fireplace, so it's the coolest room in the summer and warmest in the winter (we heat with wood). In order to do this, I had to stash away all the living room furniture, much of which ended up in the back bedroom which is now a storage room, but other pieces ended up in the hallway or my home office blocking one door that leads (guess where?) into the hallway. In order to get Bob's wheelchair in the hallway to use the rail, I had to re-open that doorway, plus move the parlor table out of the hallway where I had been using it to store supplies such as diapers, pads, etc. and I had to move a pallet of jevity out of the hallway, to boot, then move a night stand to make way for the table. Supplies and jevity went into the breakfast room, which involved moving more stuff out of the way to make room in there. The breakfast room is now a vast medical supply room. I moved the pigeon hole desk away from the office doorway, but had to move a bookcase to make room for the desk. The bookcase: I  slipped into the living room, because it's thinner than the desk and I found room for it. It was a lot of work.

Then, I went to WalMart and got some therapy supplies: dry erase boards to practice writing, markers, and index cards to make my own flash cards. Bob still cannot identify objects and flash cards seem to be the only therapy for that particular problem. Then, I got a box and filled it with objects (such as a screwdriver and various small tools, a pen, a paperclip, a flashlight, spoon, fork, knife, a rock and a sea shell, etc.) and made flash cards with the words printed on them, so that I can take out the objects and cards and have Bob try to match them up.

And I've been going through the worksheets and discharge information from OT and ST (didn't get any from PT) and am trying to sort out the things we can do here at home. My thoughts were to develop a schedule where we could do each therapy for about 45 minutes per day and in that way we'd be replicating what he was getting at Outpatient Rehab here at home.

I was feeling pretty good about my accomplishments until this weekend and now the problem is Bob-- he's been cranky and uncooperative, not wanting to participate. And I don't know how to get him motivated. I think the whole idea of being "discharged" from therapy has finally hit him. His mood has just been fowl, not depressed, but rather angry and nasty. All he wants to do is lie in bed with the urinal between his legs. He says he has "to pee" but yesterday, he laid there for four hours straight in that position and I really don't think this is a medical problem, but a mental one. Of course, I don't know for sure. That's the frustrating part, the not knowing what is going on his mind. Because he can't tell me.

Last night, up again two times changing the sheets. Three days running now, I've gotten very little sleep. The last time he woke me up, I actually put the pillow over my head, hoping he'd just quiet down and I could get some sleep. But--no. He kept calling for me. Calling and calling then finally screaming for me, so I had to drag myself out of bed. Again. I am exhausted.

I am beginning to feel that I've made a big mistake, bringing him home. A big mistake. There's a little bird on my shoulder -- a female therapist bird, if you will -- who keeps whispering things like "he's hit the wall" and "he's not going to get any better than this." And another bird who looks like a doctor saying "put him in a nursing home, you can't handle this." And I wonder, who am I to think I can help him when all the professionals have given up? And somedays, I feel as if I am failing miserably.

I must say this: thank god for this blog. Some days, it keeps me going. And thank god for the good people I have met here, the ones who keep reading and keep me going. Especially Barb, Dean and Linda (all fellow stroke survivors) whose comments have given me such hope and just to know that there is hope for recovery after one year, after two years, even longer, means so much to me. Also thank you to Hasna, who left such a sweet comment from a "far  far away country" and is also a caregiver to her husband who suffered a similar stroke. It's good to know I'm not alone. And everyone else who has commented here: Jenn, my niece Nikki, Sal, Helen and all the others. I really appreciate those words of support.

It's early morning and I just came home from walking Boomer and now I need to get Bob's pump disconnected and his medications prepared. And I hope today he'll be in a better mood.....

Who was it who said "what doesn't kill you, makes you stronger"? At this rate, I'll soon be a super hero!

Friday, July 22, 2011

MURDER & Bob Takes His First Steps At Home

Our Garage Blocked Off With Crime Scene Tape
This morning, The Pink House is surrounded with crime scene tape, the street in front is jammed with police cars and TV vans. News helicopters are circling the air.

But that's not the exciting news here.

This is the exciting news: On Monday, I had a railing installed in our hallway. On Wednesday, I had the railing taken down and put back up again, because Bob's big hands couldn't get around it, it was too close to the wall. So, on Thursday, Bob "geared up" for his first walk at home with a gait belt, sneakers and a knee brace. I wheeled him into the hallway and parked his chair at the end of the rail.

And he got up, holding onto the rail. And he took his first steps here at home. The first steps he's taken in our house since we left that morning in October for his surgery. Now, that was exciting!

He was shaky and wobbly and oh-so-slow. I held onto his belt but really only to have a handle on him in case he tipped. With my other hand, I pulled the wheelchair behind him, in case he lost his balance, I could lower him into the chair. It was a bit scary at first, but he didn't fall. He got to the end of the railing and sat back down in the chair, then wheeled backward to the start of the railing and started over again. We managed four times to do this and we were both quite thrilled and proud of ourselves. I only wish the railing was longer. The Pink House is a Craftsman Bungalow built in 1922--the key word here is "bungalow", so it's a small house without much wall space. The rail runs about 7 1/2 feet but with the wheelchair at the end, his walk is only about four feet long. But heck, it's better than nothing!

Oh, and about the murder. Seems like a known drug dealer was shot in the forehead and killed last night in our alley. This happened three doors down the block, at my friend's (Chris's) apartment building. The bullet flew toward our house and perhaps the perp fled in that direction, too. So Chris's building to the corner (our house) are all blocked off with crime scene tape this morning, as well as our garage. There is a television tripod in front of our front steps and TV van on the side of our house. I did not hear the gunshot, but was woken up at 3:30 a.m. by the police pounding on our front door. I guess I slept through the whole commotion--but I was tired (the night before Bob got me up three times with his bed wetting and another time with a bowel movement) and also I had the rooms on that side of the house closed off to keep Bob's room cooler and save on energy.  Immediately after the police left, I called Chris to make sure she was OK, and she was out on her front porch with her great-grandson watching the commotion. As Chris says, "Well, that's one way to clean up the neighborhood."

I'm just thankful she's okay and so are we. And Dad, if you are reading my blog this morning, Don't Worry! We are OK and I'll talk to you tonight!!! (My Dad is one of my blog's biggest fans!) Love you, Dad.

Wednesday, July 20, 2011

Bureaucratic Black Hole

More bad news came this week when the new wheelchair ordered for Bob arrived, or didn't arrive, as it were. The wheelchair company called me and it seems that Medicare is paying only 80% of the cost and the co-pay is $722.00. I had thought for sure that his "medically needy" share-of-cost Medicaid would pick up the co-pay, but they will not because he has a Medicare Advantage plan. For some weird reason,  they would pick up the co-pay if he had straight Medicare or if he had private insurance, but not with a Medicare Advantage plan. This doesn't make a lick of sense to me and has caught me completely by surprise, because this same bureaucracy assured me, several months ago, that they would pick his co-pays as long as the amount was over $719.00. And they actually did pick up some co-pays back in September when Bob had his hernia repaired. So, I called Medicaid to find out what was going on. When I finally got a hold of someone at the Medicaid office (took forever to get through, about 90 minutes on the phone), it was explained to me that not only will they not pick up the co-pay for his wheelchair but will also not pick up ANY of the co-pays for his three months of hospitalization or his outpatient rehab. And they are so very sorry that I was misinformed.

And as for the stuff they paid for in September, oops, that must've been a mistake.

Oh lordy. Oh my. Oh shit. 

One feels as if one has landed in a bureaucratic black hole or the plot of a Kafka novel.

So now I am down to begging at charities for help. As if I have time for this. And it's a humiliating, stressful experience, to say the least. A place called "Disability Achievement" said they might be able to help us with the wheelchair, I am waiting to hear back from them....

The reason a new wheelchair was ordered for Bob is that the hospital sent him home with a standard size wheelchair and Bob is 6'3" and truly needs a bigger chair as he is very uncomfortable in this one. In order to get a bigger chair, he needs one that is "custom-fit", hence the increased cost. And Bob was so looking forward to a new wheelchair...

I tell you, this is another reason why this country needs a better health care system.

Sunday, July 17, 2011

Last Day at Rehab

It felt like I had fallen down the rabbit hole, so to speak, on that last day at Rehab. Like Alice in Wonderland, I had landed in a world where everything was upside down....

The female therapist was there and she took Bob to the parallel bars and immediately strapped a gait belt on him and called the assistant to help her. This past week, the other therapist hadn't even bothered with a gait belt, but I'm thinking, ok, she's just being safe. But then she and the assistant grab onto the gait belt and begin to lift Bob out of the wheelchair and I say, "you know, you don't have do that anymore." She stops and looks at me and I say, "Didn't you read the notes? He can get up on his own. You don't have to help him."

She says, "What notes?"

I say, "Chris was able to get Bob to stand up on his own by leaning forward and he's been doing it ever since last Thursday."

She says, "Oh that. Bob's being doing that all along. That's nothing new."

I am dumbfounded. She can see that, so she says, "I'm surprised you haven't noticed it before."

I say, "I never saw him get up without assistance before last Thursday."

She says, "You haven't? Then, you must not have been here."

Well, I tell you I have been there, every minute of every session and what the heck is she talking about? By now, the assistant is looking confused and she drops the gait belt and says, "Do you need me?"

The therapist says, "Yes, just steady him. I just want to make sure he doesn't fall." Then, she turns to me and says, "We're not lifting him, we're just holding him steady." Then she tells Bob to get up, which he does, and she looks at me and says, "See, he did that on his own. I'm just holding him steady. He's been doing that all along."

At this point, I don't know what to say, so I don't say anything.

Bob begins to walk down the bars and the therapist stays dead in front him. Each time Bob moves his right leg, she blocks his knee with her leg and each time he moves his right foot, she takes her foot and shoves it into position. Watching this, I'm thinking this is weird, because for the last week the other therapists have been standing about two feet ahead of Bob, letting Bob do his walking on his own, letting Bob "self correct" his foot placement, so I say, "You don't need to do that anymore."

She says, "I know, I just don't want him to fall."

It feels like we've just entered a time warp, sort of gone back in time and all the progress Bob had made in the past few sessions had disappeared. Honestly, I don't know why she's doing this, why she's acting like nothing happened. Because something did happen, that session with Chris, I know it did. Why else would Chris be so excited? And not only Chris, but Bob himself was thrilled. And me. And even the receptionist saw it and was thrilled. And the other therapist, "Meanie" as Bob calls him. He was surprised and thrilled at Bob's progress and said as much....

This therapist says, "The problem here is that Bob can't do anything outside the bars. He's hit the wall," (there's that phrase again, hit the wall) "and I can't do anything with him when he's stuck in the bars. So we have to discharge him."

I am sitting there and my heart is sinking, I feel like I'm going numb, and I know there's absolutely nothing I can do, because she is intent on kicking him out of therapy. She's not going to change her mind, after all.

She goes on about it "not being the end the world," and Bob needs to "take a break" and "maybe come back in a year or so if he's made progress at home" and I'm thinking, how the heck am I supposed to get him "to progress" if these "professionals" can't do it? Or is that they just don't want to help him?

I spend the rest of that last session trying not to cry. You know how it is? When your eyes keep welling up and you keep telling yourself not to cry, because I don't want her to see me cry. At one point, near the end, I dug through my purse and grabbed my sunglasses and put them on, which I suppose looked awfully weird, but at least she wouldn't see me starting to cry.

And he was discharged. Without even being given a single piece of paper with instructions on what to do at home. The other therapists (OT & ST) gave me stacks of papers, with suggested exercises and worksheets etc. But this therapist did not give us anything. She just said goodbye. So as she was saying goodbye, I asked how will I know when he has "progressed" enough to return to therapy? She tells me that he has to be able to stand up without holding onto a bar and to walk without holding onto a bar and if he can do that, he can return to therapy.

So we left and took the wheelchair transport home. Bob was strapped in behind me and I reached back to touch him and he grabbed my hand and squeezed it so tight and would not let go. Then, I began to cry.

I came home and posted that brief note, because I knew there were some good folks out there waiting to hear the news, but that's all I had the heart to do.

On Friday, I called around and got a hold of a company who sent a guy out on Saturday to measure our hallway wall and on Monday, he will install an eight foot rail so that Bob and I can practice walking at home.

Wednesday, July 13, 2011

Horrible Day and We Still Don't Know....

So, we went back to Rehab today. Bladder problems were much more controlled, so I thought it would be a good day. The therapist got Bob started out on the bars, and Bob stood up (all on his own) and started to walk down the bars (all on his own) and I got up to get the wheelchair (as I usually push the wheelchair behind him, so he can sit down at the end of the bars) but the therapist gave me a look and shook his head "no".

So I sat back down.

When Bob got to the end of the bars, the therapist told Bob had needed to turn around and head back on his own. He's never done this before.

Bob stood there, unsure of what to do.

So, the therapist got beside him and took Bob's left hand and picked it up off the left bar, and told Bob to grab onto the other bar on his right side. Bob started to shake. Bob tried to put his hand on the other bar. His knees began to buckle and it looked like he was about to fall but finally, he grasped the other bar with his left hand.

Now, he's standing all twisted like a pretzel, still facing the end of the bars, with his hand on the right sided bar and the therapist tells him to move his feet.

And he can't.

He just can't.

It's like he's frozen in place.

He begins to shake and tremble and suddenly, he's crumpling to the ground.

The therapist runs to him and holds him up and tries to shove his feet around in the right position, all the while Bob is sinking toward the ground, his knees buckling and his whole body shaking. And oh, it is just terrible to watch. The therapist is trying to hold him up and shouts at me to grab a chair and I run and grab an office chair and drag it into the bars.

And finally, the therapist gets him into the chair. But Bob's so shook up, just literally trembling all over, he can't stop shaking, and sweat is pouring off him. I mean, he's dripping wet.

And he couldn't stop shaking.

And he couldn't really do anything else for the rest of the therapy session. He's so freaked out.

We still don't know if he is discharged as of tomorrow or what, because the female therapist (the one who makes the decision) is still on vacation or something. And today certainly hasn't gone well.

So, we went home. Poor Bob was just a mess. Peed his pants and everything. I get him home and into bed and am changing his diaper and all his clothes, I have him naked and am washing him down with a cool wash rag when the phone rings.

And it's Bob's mother.

And she tells me she's read my blog and just cannot believe I allow Bob to smoke a few cigarettes a day and tells me I should stop this immediately and what-are-you-trying-do? give-him-another-stroke? And she pretty much reads me the riot act. And pretty much makes me feel like shit. And then I'm thinking, who are you to tell me what to do when you haven't offered even one iota of help here?....

So, all around, it's been a pretty upsetting day.

He's asleep now. So tuckered out. And I have been sitting alone, pretty much just crying and then thought I'd just post this note.

We go back to Rehab tomorrow and see what happens next.

Tuesday, July 12, 2011

What A Day

Yesterday afternoon, we went back to Rehab. Unfortunately, things just started off on the wrong foot. The instant the wheelchair transport arrived at our house, Bob decided he had to pee. Now you only have a five minute window to get to the van, or the van will leave, so I told him he'd have to hold it until we got there, because he still didn't have his shoes on and I had to get him in the wheelchair etc. So, he's agitated and I'm a nervous wreck and the day has just started. We get to Rehab and I rush him into the bathroom and, of course, he can't go. His urologist has doubled his medication, and doubled it again, and, you know, some days it seems to be working and others it doesn't and we were dealing with one of those days.

So, we leave the bathroom because Bob wants to go out and have a cigarette... (I know-I know-I know, don't jump all over me. It's bad for him, but he has so few pleasures in life--can't eat, can't drink--and it calms him down. And it's just a few a day and like I said, it calms him down... And he wants to. What can I say?)  Anyway, we go outside and the Rehab Center is in the middle of this large hospital complex and, of course, everywhere is a "NO SMOKING" area, clearly posted. Pretty much the only place you can smoke is in the middle of the street, in the hot 90 degree sun and I'm not about to do that. So we find a bench where the ground is literally covered with about a million cigarette butts, so I figure this is the place. While he's having his cigarette, this very large, very unpleasant woman comes by and snipes at us, "Don't you see the signs? This is a No Smoking area." I'm thinking it's just best to ignore her, most of the time someone like this will just say their piece and move on. I kind of glance at her and then at the ground, at the bazillion cigarette butts, figuring she'll move on. But she doesn't. She stands there, hands on her hips, and says "Can't you read the signs? If the security guard catches you, there's a fifty dollar fine." I'm thinking, yeah right. But she still doesn't move on, and it's clear she's waiting for a response, so I say, "Thanks for the information, now why don't you mind your own business?" She glares at me, then  shouts, "I'm calling security!!!" and then she shuffles off into the building, and I'm thinking, oh crap, but then Bob is nearly done so I'm figuring that by the time she gets to a phone and security gets there, we'll be gone. About two second later, lo and behold, here comes the security guard. So I say to Bob, "here comes security, you better put that out," and he gives me a look that reads are you crazy? Because he only gets a few a day and he's determined to finish this one down to the last puff. The guard tells him to please put out his cigarette and Bob simply ignores her and I stall for time saying things like "Is there a place in the shade where one can smoke?" and "gee, you'd think there'd be a designated spot somewhere, especially for someone in a wheelchair," and "look at all these cigarette butts on the ground," etc. Finally, the guard leaves and Bob finishes his smoke and we go back into the building, back to the bathroom, to try again, and still he can't go.

By then, it's time for Bob's appointment and I am completely irritated (by the Smoking Nazi woman) and frustrated (by the bladder problem) and freaking out because today is D-Day with Rehab and so much is at stake and so far, everything is going wrong. We are in the waiting room and Bob is just red-faced agitated and keeps pointing at his crotch (a gesture he makes when he needs to go to the bathroom) and I get up and ask the receptionist if I can take Bob into the therapy room and use the bathroom there. She says "sure", so I wheel him into therapy, straight-a-way into the bathroom and we pass his regular therapist, who is just then coming out to get us, and I tell him that we need to make a pit stop first. So there we are again, in the bathroom, and Bob can't go. The clock is ticking. Five minutes pass, then ten minutes. I finally say to Bob that we can't spend the whole therapy session in the bathroom, we need to get going and he screams, literally screams: GAAAAAA! But, he does hand over the urinal and I help him get his pants back on and wheel him out, all the while, just dreading whatever is to come next.

We come out into the therapy room and I see Bob's therapist, with his back to us, waiting at the receptionist's desk. The parallel bars are at the front of the room, near the receptionist, so I wheel Bob over to them. As we approach, I can hear the therapist and the receptionist talking and the receptionist is saying "He really did!" and she sees us coming and looks at me and says, "I was just telling him that Bob stood up on his own with Chris on Thursday! And I saw it! Isn't that right?" The receptionist is all excited and the therapist is looking confused, so I say, "Yes, that's right, he did. I think it was four times, total." The receptionist says, "See, I told you so!" The therapist looks like he can't believe it and grabs Bob's chart and starts flipping through it, evidently looking for Chris's notes.

After awhile, the therapist comes over, wheels Bob into the parallel bars and says, "OK, Bob, show me your stuff." Then, he stands back, waiting. I'm holding breath, because this is the moment, and can Bob do it? Bob is still red-faced and agitated and uncomfortable from not being able to urinate, but he grabs onto the parallel bar with his left hand and starts to try to get up, and I realize, oh no, he's leaning backward! So, I lean over and remind him "nose over your toes, remember?" and he readjusts himself and then I can see him mouthing "one, two, three" and up he goes! He does it, again! The therapist says, "Wow." A real understated "wow." No exclamation point.

The therapist sits down on the stool. They usually sit on this stool with wheels in front of Bob and usually, the therapist will hold onto Bob while he walks the bars, the therapist sort of pushing the stool backward as they go. But the therapist just sits there, not touching Bob, just sort of looking at Bob standing there and then, he says, "Well. Let's see if you can walk."

So Bob starts out, slowly, one foot in front of the other, holding onto the bar but without anyone holding onto him. Believe me, I am holding my breath the whole time because this is something new. He's never done this before. And he makes it! The whole length of the bars, without any help at all. He does this not once, not twice, but four times. Then, the therapist gets out the shopping cart. And Bob is able to push the cart twenty-five feet, the first time and twenty feet, the second time. Of course, two people are holding onto him, but he does much better this time then he did the last time.

Of course, I am just thrilled. So I ask if this means that Bob can continue his therapy now? That's when I'm told that it's all up to the other therapist, the female therapist, who has already written up the discharge papers. And she's not there today. And there's really nothing that he can do, because it's out of his hands and the paperwork is already done....

But he said that he would talk to her and see if she'll change her mind. He said, "I know your life depends on this decision, you've got so much riding on this." But he can't make any promises, because it's her decision and not his. And he doesn't know if the paperwork has been processed through the insurance or not and if it has, can it be undone?... So, that's where we stand.

We left Rehab and got on the wheelchair transport to go home. Pat is our usual transport driver, he's a real sweetheart, and has heard my rendition of our continuing saga each time he picks us up. Pat asked how it went and if Bob can continue his therapy and I told him the whole story and how the decision is in one therapist's hands. So Pat says, "well, Diane, I guess you need to go home and bake her a cake!" and I sort of laugh and he says, "Make that two cakes, identical, but one with cyanide in it, just in case."

We had a good laugh about that.

Bob's next appointment is Wednesday and his "last scheduled appointment" is Thursday.

Stay tuned....

Monday, July 11, 2011

Day of Reckoning

Well, this is it. Today, we go back to Rehab and find out if Bob's performance on Thursday with Chris has made a difference in their discharge decision--or not. I am nervous. The last couple of days, we have tried to get Bob up and standing from the wheelchair without luck. For some reason, with the exception of twice on Friday, he just couldn't do it.... And then the bladder problems have come back with a vengeance. Just when I thought that problem was clearing up. Some days, it seems like we just can't win.

Our Lady of Lourdes
Built 1936
(click to enlarge)
Boomer and I went back to see Our Lady of Lourdes this morning. Said another prayer and snapped this photo to share with you. It truly is a beautiful place.

Saturday, July 9, 2011

An Angel At Rehab

My Aunt Pauline believes in angels. This is no secret. She collects angels (figurines, pictures and such) and often gives them as gifts. When Bob was still in ICU, back in October, and things were very touch-and-go, my mother and father rushed down to be with me and brought along with them my Aunt and  Uncle. While they were here, Aunt Pauline gave me a little framed picture of an angel with the caption and saying called "Angels Are Everywhere" which has a magnet on the back and has since acquired a spot of honor on our refrigerator door.

After our last therapy session, I think Aunt Pauline might be onto something.

We went back to Rehab on Thursday, and after the "no functional improvement" session, I was armed with a million questions and a tape measure (to measure the height the bars, in case I need to put a grab bar in the hallway). I wanted to ask the therapists if Bob needed a better knee brace, if he could have another go at the ARJO walker, and a bunch of other things when the door swings open and Bob's usual therapist is not there, instead he has a substitute. And I'm thinking, oh dear, I won't get my questions answered because this therapist is "out of the loop" so to speak, and doesn't know what's going on.

So the therapist takes Bob to bars and starts him out. We've had this therapist maybe 2 or 3 times before, when the regular ones are not available for whatever reason. The therapist gets Bob started and I can tell, he's delighted in Bob's progress. He hasn't worked with Bob for over a month and tells Bob that he is amazed at his improvement. "We'll have you walking before you know it," he says and I pipe up and tell him that Bob is about to be discharged.

The therapist can't believe this news. He asks if it's because the insurance has run out. I tell him that I don't think it's the insurance, it's because the regular therapists see "no functional improvement." I mention the fact that Bob can't even stand up from the wheelchair without help. And this gets Chris, the substitute, thinking. Then he says, "I know what the problem is, Bob, you're leaning backwards. You're way too far backward." He goes on to explain that he sees this a lot with stroke survivors, that they are afraid of falling forward and tend to overcompensate by leaning too far backward. They do this while trying to get up, but also while walking. And I'm thinking, what? No one has mentioned this before. And Chris goes on to demonstrate, by sitting on a chair and leaning a bit backward and showing how difficult it is to get up from that position. He tells Bob, "You have to lean forward, way forward, so forward it will seem awkward at first, but put your nose over your toes."

I can tell, Bob is afraid to try this. But Chris keeps prodding him along: "Put your nose over your toes. Believe me, this will work. You can do it, Bob! I know you can do it!" Along with assuring Bob that he wouldn't let him fall. So Bob leans over, as far as he can, with "his nose over his toes", and he grabs onto the parallel bar and, dammit,  if he doesn't begin to rise up from that wheelchair. Slowly and with much shakiness, but he does it. I mean, he really did it! Bob got up from the wheelchair on his own two feet! He stood up without any assistance at all!!

This is nothing short of a miracle.

And who would have thought it would be such a simple trick as leaning forward? And all this time, the other therapists have been lifting him out of the wheelchair, pulling him up with the gait belt (me included).....

Bob spent the whole session, 45 minutes, working with Chris on the parallel bars. He walked the length of the bars 7-8 times (I lost count, he usually can only manage 5 times) and stood up the last four times on his own!

And so yesterday, at home, I got out the straight legged walker and placed it by the side of Bob's hospital bed and, from the edge of the bed, Bob was able to stand up, on his own, twice! With no help from me, except I steadied the walker. (Although the other two times we tried this, he fell backward onto the bed. Oh well... Practice makes perfect, right?)

We are going to work on this technique this weekend. I hope, that on Monday, Bob will be able to wow the regular therapists by standing up from his wheelchair all on his own. And I ask you? Is that not "functional improvement"? And, of course, I am praying this will be the thing that will keep him therapy for a little while longer.

And I know my Aunt Pauline doesn't have a computer, so she doesn't read my blog. But anyone reading this who knows her, please tell her that Diane said she's right. Angels are indeed everywhere. And I believe we just ran into one last week at Rehab.

And heck, maybe Boomer and I need to visit the Our Lady of Lourdes shrine a bit more often. Perhaps Plan A is working.....

Thursday, July 7, 2011

"No Functional Improvement"

Well, that's the verdict. Rehab says "get ready for discharge". Bob is showing "no functional improvement" so he's being cast out. He's flunked, if you will. One more week of therapy and that's it: this is the end, my friend.

Wow. Even though I was half-expecting this, I still cannot believe it's happened. Around here, everyone is talking about the big Casey Anthony trial in Orlando, but it feels like this week it's been Bob on trial. And the verdict is not so good. His sentence: LIFE in a wheelchair.

And where does that leave us? Bob still can't lift his own butt out of the wheelchair, he has to be lifted. He can only stand hanging onto a bar. He can walk in the parallel bars, but not outside of them and even then, someone has to catch his right foot when he places it wrong. He can't even sit up at the edge of the bed, I have to pull him up and then, once sitting, he begins to wobble and I have to steady him.... And we still have to use the slide-board to transfer him from bed to wheelchair and vice versa. And I just can't believe he's being discharged from therapy like this---I mean, I never expected this, when he started Rehab I figured he'd at least be hobbling around a bit with a walker or something before they discharged him....

So once again, it's all on my shoulders. And I've been going back and forth (in my mind) trying to figure out the next step. Couldn't sleep at all last night, my mind reeling: What to do? What to do? Because, you know, I'm not about to give up. So, screw the therapists! They might have the practical know-how and the experience and equipment, but I've got one thing over them: I love this guy!

So, I'm thinking I need a plan. Here's what I've come up with so far:

Plan A: Pray for a miracle. That Bob will rally 'round and show them some "functional improvement" in the next four sessions. OK, this is a long shot, but miracles have happened to him before.

Plan B: Take a bit of a break from therapy and see his doctor next month. Maybe we can go to a different rehab center? (Will the insurance allow this? God only knows. But I'm told that folks some times "take a break" and return to therapy, so there must be a way to do this...)

Plan C: Turn the Pink House into Bob's personal gym. Easier said than done. Especially with no cash to speak of....  But I'm thinking, for starters, that maybe I can get a grab bar installed along the wall in the hallway and Bob can hang onto that for walking practice. This is a bit scary, as what happens if he falls? At Rehab, they always have two people there for him and I, of course, am only one person.....

So back to Plan A. I walked Boomer early this morning and we took a little detour and paid a visit to the Our Lady of Lourdes shrine behind a Catholic church near our neighborhood. There, I said a little prayer for a miracle.

What can I say?

Monday, July 4, 2011

Stand By Your Man

For the past three days, we've been working on leg exercises and standing practice. Whew! I am beat and only can imagine that Bob is beat, too. This regimen of ours takes all afternoon because Bob is slow and, of course, bathroom breaks... So, pretty much all other therapies flew out the window with the exception of mirror therapy (I have him do this while I give him a tube feeding, which takes about 15 minutes, a sort of multi-tasking here) and a pudding cup for swallow practice while I eat my supper.

Standing is a terrible ordeal. The problem here is that Bob is so weak he cannot get up out of the wheelchair to his feet, so he has to be pulled up. At Rehab, it takes two people to do this or one big strong guy. And me? I'm 5'4" and he's 6'3" and weighs about 185 lbs. and even with a gait belt (which has to be worn under his armpits because of the peg tube), I am stretched to the max trying to pull him upwards (over my head!). We manage to accomplish this using a straight legged walker braced against the footboard of his hospital bed, the wheelchair pushed snug against this and then it's 1,2,3 and Bob pushes and I pull until he's on his feet. Once he's up, he pretty much can hold himself up without help, but even then I can tell he's leaning too far to the left, not putting weight on his right leg like he should. Sort of standing one-legged while I stand next to him, holding onto his gait belt in case he falls, and reminding him to put weight on that right leg and clocking him with my watch. Our record this weekend is 3 minutes and 20 seconds.

But I can tell you, my legs and arms are sore and stiff this morning. My back's not doing so great either.

And of course I will not say a word about our difficulties to the therapists. I have learned that anything you say "can and will be held against you". And Bob doesn't need any more strikes on his progress report. It's a sad thing when the people who are supposed to be there to help seem like the enemy....

Bob has two more scheduled weeks of PT before another dreaded evaluation. But today I am tired and worn out from all that standing and really thinking a day of Scrabble therapy sounds pretty darn good....

Friday, July 1, 2011

Mixed Messages At PT

Just when you think at least one thing is going good, someone drops a bomb and your little bubble bursts. This is how I'm feeling after yesterday's physical therapy session.

Bob works with three different physical therapists at PT. Two of them are guys and the third, a woman. I am always happy when he's scheduled with one of the guys, because Bob just seems more motivated and comfortable with them and, all around, it seems there is better rapport. Bob calls his favorite male therapist "Meanie", this being said with a fake scowling face whenever the therapist asks him do something, and is always followed by hoots of laughter and a lot of joking back and forth.

This week at Rehab, Bob was scheduled with "Meanie" on Monday and Wednesday. Meanie kept Bob in the parallel bars and at one point the female therapist stopped by to watch and then asked why they weren't using the ARJO to which Meanie replied "I get more work out of him this way." On Wednesday, Meanie seemed quite delighted with Bob's progress, told me Bob's "step quality" was "greatly improved" and also that Bob has started to "self correct" meaning that when Bob's foot falls the wrong way, he is sometimes able to realign it without the therapist's help. He told me, "I've never seen him walking so good!"

So, I'm feeling rather pleased about this. After all, at least one of the therapies is going well! Then came Thursday and Bob was scheduled with the female therapist.

It's no secret that the female therapist wants Bob "out of the bars". This seems to be her mantra lately, i.e. "You can't live your life in the parallel bars," "you won't have bars when you get home", etc. etc. So on Thursday, the therapist brings out the shopping cart. Now this is actually a real shopping cart, in fact it says Walgreens on the handle. So, imagine one of those small drug store shopping carts laden with weights to give it stability. The idea here is that Bob was to push the cart slowly across the room with a therapist on each side of him to keep him steady. I was, again, called into duty pushing the wheelchair behind them.

So, off they went, Bob pushing the shopping cart. Then, his right knee began to buckle. He hasn't had a problem with knee buckling for a couple of weeks, but there it was. The therapist had to brace his knee with her leg, but still they continued on this slow shopping cart trek across the room. At one point, Bob was asked if he wanted to stop but he said "no". I think he pushed that cart about 30 feet, which I thought was pretty good. Then he sat down, exhausted. The therapist said that was enough for today, but Bob indicated (by pointing) that he wanted to work out on the bars. So, we rolled over to the bars and Bob got up and walked the length of the bars, four times. I could tell he was very tired from the trek with the shopping cart. After his fourth turn on the bars, she let him rest. As he was resting, she began her mantra once again, "you can't live your life on the bars," etc. So I piped up and said I thought he did pretty good with the shopping cart, I mean, he really went a long way. She told me that the problem was that they were holding him up the whole time and if the therapists hadn't been holding him up, he would have collapsed. So I asked what she thought the problem might be, his balance? or what? and if there was some type of exercise we could do at home to improve that? But she said that "unfortunately" it seems that it's Bob's "whole right side" that's the problem and he's just "too weak" and really, "it's amazing" that he's gotten as far as he's gotten, but now he's "hit the wall" and he's probably not going to go any further than this.

And I'm thinking: oh shit. Because the female therapist is the one who is "in charge", I mean, she's the one who does the evaluations and pretty much is in control of continuing Bob's therapy, or not...

As we were talking, Bob was certainly listening to all this, because he grabbed onto the bar and started to pull himself up again. I think just to show her that he wasn't giving up. She freaked out, because she wasn't ready for him to get up again, and ran to assist him. And he walked another full length of the bars... Just to show her. Even though he was exhausted.

She said, "well, it's not for lack of trying."

And I asked her, again, what we can do at home to improve this problem? She told me that the only thing we could do is practice standing, get some weight bearing on his right leg.

So, this weekend, while everyone else is enjoying the 4th of July, think of us. Because, damn it, screw the other therapies, I'm going try to get him up and standing as much as I can (which will be no small feat, because Bob really hates "standing practice").....