The Kindness Of Strangers

So I walk into our bathroom, I don't remember why, did I have to go to the bathroom or was I going to get something? I don't remember... but what happened was that I stepped into the bathroom and I heard this noise, this sort of gurgle, gulping noise, and I stopped. And thought, what the hell? I stood there and listened and then I saw the toilet bowl was filling up, on it's own. Filling up to the top. I stood there and watched it, sort of amazed for a minute, but it was nearly overflowing, so I ran to grab the plunger, but the minute I have the plunger in hand, the toilet is overflowing onto the floor, so I grab the rug and my shoes which were there on the floor and throw them into the hallway, and I take the plunger to the toilet and then I hear another gulping, gurgling belch and it's tub. Water is coming out of the tub drain into the tub. I step back, horrified, I step back. It's as if the bathroom has come alive! Even Ripley, who had followed me into the bathroom, flees in terror.

I am not a plumber. Bob used to handle that stuff. I am pretty handy, I mean, I can replace an electrical outlet, put in a light fixture, I even once hung a ceiling fan--though that still wobbles a bit, but plumbing? That's a mystery to me, so I am pretty much freaking out. So I run to Bob, who is in his hospital bed, and I blurt out the problem and he looks at me and says, calmly, "Oh well."

A lot help that is.

I grab the phone book. It's a Sunday and I'm thinking there's probably going to be an extra charge for work on Sundays and I have visions of dollar bills flying down the toilet, literally.  And, crap, how are we going to afford this? but I'm flipping though the yellow pages and I see an ad for plumber which says "no extra charge for weekends or holidays" so I call them.

They tell me they will send someone out within 2 hours. While I wait, avoiding the horror scene in the bathroom, Bob and I run through his leg exercises in bed and do his range-of-motion right arm exercises and I realize I need to trim his fingernails and as I'm doing that, the plumber arrives.

The plumber is a nice young guy who actually introduces himself and shakes my hand, which is sort of unusual, for a plumber. I show him the bathroom and tell him what happened and he says he thinks the sewer line is clogged. He asks if there is a sewer access cap outside. I am thinking what? He tells me it's a white round cap, usually in the ground near the house and I'm thinking I've never seen anything like that, I mean, Bob and I painted this whole house a few years back so I've pretty much had my hands on every crevice and cranny outside, but I don't remember that... but we go searching. All around the house. And we find nothing. So he starts to dig.

Sometimes, he says, the cap in on the pipe underground. And if he can find the cap, he can run a roto-rooter through it, otherwise he'll have to take the toilet off and that will cost extra. So, he's digging and hits a pipe and digs around it and lo and behold, there's a pipe but no cap. And he continues digging and uncovers the pipe, which is a 90 year old terra cotta pipe and it has two huge gaping holes in it.

It doesn't look good. It looks, in fact, like our sewage has been pouring right into the ground. He digs around the pipes and through the two large hand-sized holes, he pulls out clumps of tree roots.

He says, "You've got to replace this pipe."

I gulp, "How much is that going to cost?"

And he says, "Well, we have to run a camera through it to see how much pipe needs to be replaced, but just this part will cost about $1500 and if they have to go all the way to street you're looking at $4000 or more. I can send a guy with a camera tomorrow, that part will cost $390.00"

And I'm thinking: oh shit.

He says, "We take credit cards or we can finance it, if you have good credit."

And I thinking, oh shit again. Because of course we don't have good credit, not after all these medical bills, etc. and our one credit card that I've managed to hang onto is nearly maxed...

I say, "Our credit is shot. My husband had a stroke last year and all these medical bills are after us..." and I start to cry. Right then and there. I hate to admit it. But I can't help it. I am standing there looking down into this stupid hole on the side of our house with a pipe with two big holes in it and I start to cry. Because honestly, I don't know what to do.

He tells me that his mother just had a stroke and she's in rehab. So he certainly understands, because he has power of attorney and the medical bills are enormous. That he is one of 11 children, and everyone in the family has gone broke just trying to pay for his mother's rehab.

He says, maybe you can get a handyman out here to do it cheaper, the pipes could be "patched" with concrete, but he (the plumber) can't do a "patch" job because that would get him fired.

He says, he'd be happy to run a roto-rooter through, see if the rest of the pipe can be unclogged first, there's certainly a tree root problem here but the pipe would then have to be patched somehow and who knows the roto-rooter might break through the old pipe down the line..... But he could do the roto-rooter and that would cost $250.00 but there's no guarantee it would work. No guarantee and it might make things worse. And I could hire someone else to patch the pipe.

I say, sniffling like an idiot, "I have to think about this." Because even $250.00 is a lot of money for us. Especially with no guarantee. And where would I find a "handyman" to do this. I look toward the house, where Bob is inside, in his hospital bed waiting for me and I'm thinking, god damn it, Bob, you're supposed to be well and out here and handling this stuff!

We stand there a few minutes staring at the hole in the ground and the old broken pipe.

Then he says, "Is there a Home Depot nearby?"

And I say, "Yes."

He says, "You run to Home Depot and get some Quickcrete and a 5 gallon bucket, and I'll run the roto-rooter through, and I'll be real careful not to break the pipe and if it doesn't work, I won't charge you, but if it does, I'll patch the pipe with concrete and that will get you by for awhile. I'm not supposed to do this, so don't tell anyone. I could lose my job. Maybe my license."

And I did. I run to Home Depot, all the while praying to the roto-rooter gods that the pipe doesn't break. And he did, run the roto-router through, which unclogged the old pipe. And he patched it with concrete, all the while as he worked, we exchanged "stroke stories", his mom, my Bob. And he only charged me $200.00 and we hugged each other when he left.

Thank goodness for the kindness of strangers.

Back in the Saddle

I am back on my feet, after being sick for a couple of weeks, though still not 100% well. Bob and I are once again trudging through his daily therapy routine, though I find myself tiring easily. This has all come at the worst time, as we are expecting visitors next week. My parents as well as my aunt and uncle are coming to see us--which I am really looking forward to, but I had planned to clean this darn house plus whip the yard into shape before they got here, and everything including my health is getting in the way.

This past hectic week, we spent visiting doctors, (his primary doc doesn't think Bob is ready yet to go back to rehab) plus I signed Bob up for a new Medicare plan--it's open enrollment now and the co-pays on his old plan was going up: $40.00 just to see a doctor and Bob has seven different doctors. But that's now taken care, as well as I finished up his 'disability discharge' paperwork for his student loan, which has to be done yearly. Then the wheelchair guy was over for a final tweak of Bob's new chair, and of course, the minute he leaves Bob wants it re-tweaked again, so I'm on my knees with a screwdriver, messing with the chair. Then our friend, Chris, is in the hospital with a blood clot in her leg (she may have to have toes amputated) and that has been weighing heavily on my mind and I've been spending a lot of time on the phone with her. Which also means she can't get over here to watch Bob for me, so I've been making "mini-runs" to the pharmacy/library/stores just about everyday so that I am not away from Bob for more than a half hour at a time. Yesterday, the Y-port on Bob's peg tube split in half and I had to duct tape it together to hold it closed until they can send a new one. This morning, there was a bowel movement to clean up and while I was doing that, Bob peed all over me and the bed.  aaaargh...

The other day, while I was rushing through the library to pick up some DVDs for Bob, I saw a book on the new non-fiction shelf by Diane Ackerman. Grace Carpenter had mentioned that book in a comment here, so I scooped it up as I stood in the checkout line. The book is called "One Hundred Names For Love" and billed as "A stroke, a marriage and the language of healing". The jacket says the author's husband suffered a massive stroke and severe aphasia and she "designed" a therapy for aphasia with "astounding results". So, of course I checked the book out, hoping to find out something useful for Bob.
I don't have a lot of free time to read, but figured I could read it over breakfast bit by bit. Well. This book has brought out some weirdly strong emotions in me and I'm only 60 pages into it. Of course, the beginning is all about the stroke itself and backstory about the two of them, but I find myself becoming insanely jealous.

Yes, jealous of another woman's husband's stroke. Which is really weird when you think about it. Is there even such a thing as "stroke envy"? Or have I invented it?

But here her husband is, right after having a "massive" stroke, and he's walking---walking!---to the bathroom! And I can't believe it. He's walking, albeit wobbling with an aide's help, and he can go to the bathroom so he can control bowels and bladder and lordy, I am jealous. Not only that, but he can eat scrambled eggs. He can eat! She says he has a swallow problem, but he's eating at least something. And she's moaning about the possibility of sending him to nursing home? Then there's all these references to their posh house with a pool, not to mention the fact that she's making money off this book and here I am trying to figure out  how to pay the car insurance which is due next month, while the phone rings with creditors. And of course, all the doctors that treated her husband were so great and Bob had to deal with a bunch of white-coated idiots. Then, the next scene when her husband starts to move his arm, while still in acute rehab---I nearly threw the book across the room! (Why couldn't Bob have had a stroke like that?! gaaa!)

I guess I'm just throwing a bit of a pity party here. And probably more than just a bit of professional writer envy. (Heck, I should be the one writing a darn book!) I need to find a book about someone's stroke which was worse than Bob's, then I'll feel better. But I'll keep reading it, because I haven't yet got to the part about her innovative aphasia therapy and that's why I'm reading this darn thing in the first place....

Well, I gotta run because I'm doing three loads of pee-soaked laundry and still need to try and clean this house up a bit.

Bob's New Wheels

Bob and His Brand New Wheels

Finally, a "Bob-sized" wheelchair! The standard wheelchair they sent from the hospital was just that: STANDARD and Bob is 6'3" so you can imagine how uncomfortable he was.

This puppy was ordered in May and finally delivered in September and after a month or so of adjusting, it seems to fit him fine!

Special thanks to my mom and dad and Disability Achievement Center for paying the co-pay, otherwise we couldn't have afforded it.

One Year Stroke Anniversary

One year ago, Bob had a stroke. Just seeing that date, Oct. 21, on the calendar floods me with emotion...

Yesterday, I asked Bob if he knew what day it was. He looked confused. So I said, "It's October 21st."

Still, he was confused. I said, "One year ago today, you had a stroke."

He said, "Oh."

He was quiet for awhile then asked, "Months?"

I said, "Twelve months ago. You had a stroke twelve months ago today."

He was quiet again, then he shrugged his unaffected shoulder and said, "Oh well! Happy New Year!"

Shut Down

We are surrounded by foreclosures. The house behind The Pink House sits abandoned, its stucco face cracked with age lines, its wooden front steps broken and leading to a drooping porch on which a bloated and long ago delivered telephone book lies. On the other side of us is an empty duplex, its aluminum eaves, pealed back like a sardine can, clank when the wind rises. Next to that, the melted facade of a long forgotten house, its vinyl siding liquified in a fire set by vandals, window glass all broken out.  Across the street, a For Sale sign has sprouted in the lawn and next door to that another foreclosure, though that neighbor is hanging in there until, she says, they drag her out kicking and screaming.

A few years ago, during the big real estate boom, we were the next "up and coming" neighborhood. Ripe for revitalization, conveniently located with many fine historic bungalows ready to restore....

And now, it seems like this neighborhood has shut down.

These past few days, our DIY rehab center at The Pink House has been shut down, too. Because I've been ill. Me. The strong one. The one whose always healthy as a horse. Lately, it takes everything out of me just to get Bob's bedbath, meds, tube feedings done and then, I am down for the count. Crashed on the couch. Feeling as dismal and miserable as this neighborhood. And guilty as all get-out....

Which brings up another dilemma, the first time we are dealing with this, which is: Who takes care of the caregiver when the caregiver needs care?

Go Fish

Toward the end of Bob's Speech Therapy, when it became apparent to me that the therapist was giving up, I began to hunt around for new and different speech therapy techniques. Unfortunately, there's not much free information out there. I did run across the mention of "Constraint Induced Therapy" for aphasia, but that invariably led to me a website to "buy our computer program" or "enroll in our clinic", both of those options being too expensive for us. I had heard of Constraint Induced Therapy for arm/hand paralysis, and that the therapy involves securing or tying back the unaffected arm/hand so that the participant is then forced to use the affected arm/hand instead. But how is this done with aphasia? When there's nothing to tie back or secure???

I continued searching for this therapy and finally landed on the results from a research study group for Constraint Induced Aphasia Therapy. In that study, the participants played the card game "Go Fish" and as they played this game, gestures such as pointing, etc., were "outlawed" and the participants were thus "forced" to speak. And I thought, well, Bob and I can do that. We can play "Go Fish."

But alas, I had never played Go Fish before--did I have a deprived childhood, or what? ha! I managed to find a deck of Go Fish cards at the pharmacy for $2.50 and snatched it up. Fortunately, it had directions.

We've been playing Go Fish since about May, when the Speech Therapist was giving up on Bob and she was starting to "teach" him gestures (which was idiotic, I mean, he's aphasic not retarded) and wanted me to put together that Clip Art Notebook so that Bob could point to pictures instead of saying words (I hate to say, but I never did do that. It just didn't seem the right thing to do.)

In case you (like me) never played Go Fish or have forgotten how it's done, the game is pretty simple. The deck I bought is geared for children, so it has pictures of animals on it. Each player gets dealt five cards and the rest of cards are put in the "Go Fish" pile. Then we turns, asking each other, for example, "Do you have an elephant?" And if the other player has an elephant, they must give it up. If they don't have an elephant, the other player tells you to "go fish" which means take a card for the pile. The object of the game is get as many matching pairs as possible. The one with the most pairs wins.

While we play Go Fish, I really force Bob to speak, to say the phrase "do you have a...?" He does have a big problem with names of things, so I show him my card while asking him, otherwise if I just asked him for an elephant, he'd probably hand me a Lion card, instead. So I let him see the card, so that he can make the connection. When it's his turn, I give him time to try to figure out the name of the animal, only helping when he gets really stuck, and then usually if I give him the first sound in the word (example: "el" for "elephant") he can figure it out.

So where is all this leading? Yesterday, when we played Go Fish, Bob really shocked me. Usually when we play, and it's my turn and I ask him for a card and he doesn't have it, he says "no" and I have to coax him into saying "go fish". Yesterday, he responded "No, I do not. Go Fish!" And he did this pretty much consistently throughout our game.

"No, I do not. Go Fish!"

Oh, I do hate to sound like a broken record, but every time he comes up with a complete sentence and/or new words, I am just leaping for joy!  So forgive me.

Also, yesterday, Bob hit a new record on the rail: 26 times. But, more exciting for me was that afterwards, he said, "Geez. I'm worn out."

And to think Bob is having this "breakthrough" now, just one week shy of his one year stroke anniversary. And to think, Speech Therapy gave up on him back in June.

Timelines & Predictions

Bob's one year stroke anniversary will be on Oct. 22nd. This impending date has had me, I'll admit, a bit freaked out because of all the talk about "the first year" post-stroke and recovery being difficult if not impossible after that. In some ways it doesn't seem like a year has already passed. In other ways, it seems much longer than that--a lifetime maybe. I don't think I was prepared, back then, for what a long process this recovery would be and still is.

I remember one of the first "predictions" about Bob's recovery came from one of the doctors in ICU who told me, in November, that Bob would be "home, walking and talking and eating, by Christmas."

I actually believed that guy and he was wrong, on all points.

Then, another doctor in December told me "don't get your hopes up" as "he will never walk again."

We are still proving that doctor wrong.

And the doctor in charge at the Acute Rehab Hospital, who told me that Bob would never come home and would have to, sadly, spend "the rest of his life" in a nursing home. Wrong, wrong, wrong again.

And countless therapists, who told me that Bob had had too many "set backs" and got started on rehab too late, because, you know, after that "window" which is the first "three months" or "six months" or "one year" (depending on who was talking at the time) the prognosis is very poor and recovery is unlikely....

Recently, I was browsing an aphasia/stroke website and I ran across a discussion board and was horrified to find that many people on that website were under the impression that if you haven't recovered from aphasia in 2-3 months, you will never recover or improve.... I am glad no told me that.

Because Bob has had, I believe, the greatest overall improvement in his speaking, just this last month. He has said so many complete sentences that, geez, I've lost count.

Also, this week, Bob hit a new record on the rail, 25 times: that's approximately 150 feet that he is walking almost everyday. At Outpatient Rehab he was lucky to do 50 feet, three times a week, on the parallel bars. So much for "hitting the wall"--eh?

Which makes me wonder, why do these doctors and therapists and experts always make predictions? Why are all these timelines handed out as though they are "set in stone"? Because it seems to me that it only discourages people.

So, today, I'm making a vow to myself to no longer get freaked out about timelines. So what if his stroke anniversary is coming up? We still have time and determination to improve.

CIDP Still "Quiet" & Other Neuro News

I took Bob back for his follow-up with his neurologist last week and the doc thought Bob was doing quite well, all things considering. Bob's affected (right) hand is gaining spasticity which means it is progressing somewhat, so not all hope is lost for that. He was worried a bit that Bob was clenching his hand to tight and talked about getting a splint, but really that's up in the air. I'm to keep an eye on it. He also tested Bob's vision, but, unfortunately, there is no improvement there. I think, we were all (doctors and I) hoping that some of his vision would come back, but Bob still is totally blind in the left eye and has no peripheral vision in the right one. And that is sad.

The doctor also informed me that Bob would have to stay on blood thinners (Warfarin) for the rest of his life because his "genetically unnaturally thick blood" could cause another stroke. And also he will have to have a once month blood test for the rest of his life to monitor his blood thickness. But that's something we can manage.

The doc then tested Bob for CIDP and he could find no trace of that disease, he said the CIDP was "quiet" and thank goodness for that. I was beginning to worry as Bob seems to be having more trouble holding his head up lately, but the doctor assured me it was just muscle atrophy from the CIDP and not the CIDP returning. And that is such a blessing.

An interesting aside, Chris' brother suffered a left hemisphere stroke about three months ago (he's doing quite well now, just some right hand coordination problems) but he also previously suffered from diabetic neuropathy and since his stroke, his neuropathy has also completely disappeared. Makes me wonder if anyone's done any research on this phenomenon... i.e.: stroke cures neuropathy??

Terms of Endearment

Since the stroke, Bob has not been able to remember my name. I'm talking not so much about my actual proper name (though that, too, is a problem) but my "pet name". Like many couples, before the stroke, Bob and I did not walk around the house addressing each other by our proper names. We had pet names. Mine for him was "Dar" which is short for darling, but also means "gift" in Polish. Or I called him "Bucky", don't ask me why. He always called me "Sweetheart" or "Sweets" for short. I know it's rather sappy, but I certainly have missed that.

Back in January, when he first came home, he kept calling me "Brenda".

(Which really brings to mind one simple question, which is: Just who the hell is Brenda??)

After he got over the "Brenda stage," he stopped addressing me completely and when he wanted me, I became just "hey" or "yoo hoo" or occasionally "hey you".  Not very romantic, that.

So you can imagine my joy when, just yesterday, Bob turned to look at me and grabbed my hand and said, "Sweetheart."

Just that one word.

And I am elated! I mean, I'm like a 13-year-old with a crush on a boy who just smiled at her. I want to do cartwheels through the house!!---but I won't because I'd probably just break my neck.

But such joy, such simple joy, just to be a "sweetheart" again.

End of a Long Strange Summer

A "cold front" moved into Florida yesterday, and I put quotes around "cold front" because you folks up north will laugh when I tell you that means our temperatures dipped to a frigid 69 degrees at night and cooled down to 85 degrees during the day. But what a pleasant relief from the constant 93+ degrees that has been droning on all through this summer.

It has been a longest, strangest summer. Bob and I have been pretty isolated here at the Pink House. Window shades drawn (for energy efficiency), air conditioner humming in the background. Every day a repeat of the day before: laundry, bed bath, tube feedings, therapy in the afternoon, diaper changes, bladder issues....

Yesterday, I flung the windows wide open and aired out the house. This made the cats quite happy. This morning, I got out in the yard to do some much needed yard work.

Yesterday, too, Chris moved out. The neighborhood seems strange and lonely without her.

"Not Simon"

Last week, I found a home for a stray/lost cat who had been hiding under our wheelchair ramp during the day and snoozing on our front porch at night for about 3 weeks. I had called an ad for a lost cat that sounded much like this one, and when they came to look at him, it was "not Simon" (their cat) but they actually fell a little in love with him and asked if they could take him home. I said yes, of course, because he would be so much better off in a good home then hanging out under the wheelchair ramp. And I really I don't have money to support and care for another cat. (Although I was already feeding him, I've always been a sucker for a stray....) And now, I rather miss that kitty.  I still find myself looking for him each time I go outside. Seems like my heart has broken more than once this past week.

Last I heard from the people who took "Not Simon", they had taken him a vet, checked for a microchip (found none), given him blood tests for Feline Leukemia and other things (all negative), got all of his shots, had him dewormed and now he is living in a climate controlled condo in Innsbruck with a female friend of their's who is an Occupational Therapist. Weird, huh? So, I do know he is better off.... but still, I miss him.

Also, this past week Bob hit another new record walking on the rail: 23 times. Although yesterday, he could only manage 18 times. When he indicated he couldn't do anymore, he looked up at me and asked: "Are you mad at me?" Of course, I wasn't "mad" just a bit disappointed and concerned as his right knee was buckling and it hasn't done that for a long time. But, hey, that was another complete sentence coming out of his mouth.