Still Sliding

Well, I ordered a new urinal, a French urinal, which is supposed to be "spill proof". And the minute it arrived, I was elated: this was thing that would save the day! Yes! Alas...... it's not working.

Aargh.

Some days I don't know whether to pull my hair out or bawl my eyes out. Sometimes, I do both.

I don't know if he's missing the hole or--what? I talked with one of his Occupational Therapists and she had no advice to offer except to "monitor" him more closely. OK, but it happens like 2:00 in the morning... She also suggested a catheter, but I feel that would be going in the complete wrong direction. I mean, all this stroke rehab is about "rewiring" the brain, and if he has a catheter, he no longer has to try to control it himself, and his brain won't "rewire" on this issue. She actually agreed with me.

I have tried to talk to Bob about this, but it's very difficult (with his aphasia) to know exactly how much he understands. I mean, I have heard him answer "yes" to questions and know that he absolutely does not mean "yes". (An example, a song by the Bee Gees was playing on the intercom, and one of the therapists asked Bob if he liked that song, and Bob said "yes". Well, I happen to know that Bob hates that particular song, at least he used too.) So... I try to discuss this problem with him and I ask him to tell me what is happening. Bob tells me "the bottle" is "tippings". He tells me, "happens". He says, "I trying". He promises to try harder. Right now, he is sleeping with his hand on the urinal, ready for action if need be. I know, he is trying and this situation is upsetting to the both of us.

Maybe a little more practice on his part?

I never thought that this would be so hard. I figured we'd conquer the urinal and then move on to the bedpan. (Don't even ask about the bedpan. He still has no control over that function, but at least that's not happening more than once a day.)

I am getting very little sleep, lately.

Sliding Backward

It's been a tough couple of weeks and sometimes it feels like we're sliding backward instead of progressing. I thought the worst was over, after that first month Bob was home, but now it feels like I've landed back in time.

I'm talking about the nitty-gritty stuff of life here, the unmentionable stuff: the process of elimination--to be polite, or "piss" to put it bluntly--- and that damnable urinal.

When Bob was hospitalized, the first thirty days after his stroke, he spent in ICU in critical condition and in a drug-induced coma because of severe brain swelling. He had a Foley catheter then. After he developed the second bout of near-fatal pneumonia, he was sent to yet another ICU at Kindred (a special pulmonary hospital) where he was put on a "vest airway system" which is a sort of inflatable vest that wraps around the patient's chest and literally shakes the secretions out of the lungs. He was on what they called a "Texas catheter" then, a sort of condom device attached to a tube. He spent four weeks at Kindred (a regular hell-hole of a hospital, in that all the patients were attached to some sort of life support machine and it felt like walking into a horror movie set). Finally, he was discharged to Acute Rehab, where he was first on the Texas catheter, then later in diapers. I had asked them, repeatedly, if it wasn't possible to teach him to use a urinal or bedpan, however this did not happen. So, he came home. In diapers. And I was determined from the start to teach him to use a urinal. I mean, changing diapers six to seven times a day is a pain, not to mention expensive.

The first couple of times it worked like a charm. Bob used the urinal. I dumped it. Piece of cake, right? Then we started running into problems: i.e. spillage. He seemed to be losing control of the urinal, especially at night, and the whole thing would get dumped: all over the bed, all over Bob. And I am up six or seven times every night, changing sheets, changing his clothes and that first month, my dryer broke (aargh) and I remember piling mounds of urine soaked sheets and clothes in the back yard because I wanted to keep some of the stink out of the house. Oh, those were the days.... and then one night, we had what I like to think of as the "urinal war".  It was 3:00 in the morning, or some such god-forsaken hour, and I was changing out yet another set a sheets and I lost it. I told him:  that was it, no more urinal. Just go in the diaper. That's what they're for, after all. He flipped. I mean, really flipped. I know that when someone has a left-brain stroke that his "logical" part of his brain has been compromised and the right side takes over, the child-like emotional side, and that night was the first time I really saw it come through. He threw a tantrum that would rival any two-year old. He began screaming, first "DIAPER! DIAPER!" then "BOTTLE!" then just "GA! GA! GA! GA!" I relented. And gave him the urinal back. But with warning: one more time, and it's gone. And wa la! It worked. No more spillage. Until now....

For some reason, we've slipped backward here. And once again, I am up every night changing out the urine soaked sheets, the clothes. At least my dryer works, but.... Now, it's me who wants to scream GA! GA! GA! and last night, I lost it again. I hate to admit it. I'm only human. But I took the damnable urinal away. He didn't throw a tantrum this time. But I could tell he was upset. And later, he more or less asked for it back. I gave it to him. With another warning. God, I do hope this works again.

I don't know why I'm writing this. It's not very pleasant or uplifting. It would be so much better to have something good to report. But, alas, I do not. I guess I'm just venting. Getting things off my chest. Letting you all know that life is not a bowl of cherries here. Sometimes it's just hard.

Thank Goodness for Good People

I spoke with my dad and mom last night (they call every day, and I truly appreciate their support) and my dad offered to send us the money to pay for a wheelchair transport to get Bob to and from Rehab. This is a life-saver (and back-saver for me, no more lifting that wheelchair, etc.), thanks Dad!!! The wheelchair transport is a sort of taxi for wheelchairs, i.e. a van with a wheelchair lift and it costs $3.50/each way, so $7.00/round trip times three times a week = $21.00 per week for us. Too much for us to pay, with everything else Bob needs (i.e. diapers, feed tube supplies, medical equipment rentals, prescriptions, doctors and therapy co-pays, etc.) So, to Mom and Dad, a big THANK YOU!!!!!

Another big Thank You to Cheri for sending the Dell laptop. As soon as I have time to figure it out, I'll transfer my files and it certainly is a blessing (not to mention peace of mind) to have a back-up for when this old Mac gives up the ghost! And I hope I can find some "brain games" to download for Bob and maybe he'll be able to use it for some therapy. So, THANK YOU, Cheri!!

It's good to have good people in your life.

Bad news about the hyperbaric therapy. We went yesterday to see the doctor in charge of HBOT and she said that Dr. Doom did not have "authority" to write a prescription for hyperbarics and is sending us to yet another doctor. Damn.

Caregiver Burnout

I do believe it's finally hit me. I am literally, completely, totally burned out. Bone tired. Exhausted. Don't know which way I'm going half the time. Crying at the drop of a hat. Bob started Outpatient Rehab, but too early for any results except that my back is killing me---man, that wheelchair is heavy... and we're scheduled to go three times a week, plus doctors appointments. I don't know how I'm going to keep this up not to mention how we're going to pay for it.

Bob Working Hard at Scrabble Therapy

Breaking News: His Right Arm Moves!!!!!

This morning, I was in the kitchen crushing up Bob's a.m. meds when I happened to look up through the pass-through window that looks from our kitchen into the dining room and living room (Bob's hospital bed is in the living room) and I see an amazing sight: Bob's right arm in the air! At first, I couldn't believe my eyes. I went to his bed, but his arm was still. Could I have imagined this? So, I went back to preparing his medication and while I was syringing the meds into his feeding tube, Bob yawned and his right arm sprung into the air!!!!

This may not seem like a lot, but there has been absolutely no movement in that arm since the stroke. And, although it was strictly an involuntary movement, it means his arm is no longer paralyzed. And it has certainly not "plateaued!" This is progress! This is the way he started moving his right leg: first with involuntary movements, later he began to gain control.

Whoo hoo!!!!!

I write this breathlessly, quickly because we have a big day ahead of us. Bob has his evaluation appointment at Outpatient Rehab and I need to get him ready for that. Happy tears, today!

A Treasure in the Garden

I had a little time this morning while Bob was still asleep and decided to catch up on some long overdue gardening. While weeding in my garden, my trowel hit a rock and I was about to toss the rock aside when I noticed some familiar handwriting on it: Bob's handwriting.

His message made me smile. Then, it made me cry because now he can barely read or write, let alone sneak out into my garden and leave a little message. I try to be strong, but some days, I just want my husband back.

Hyperbarics Here We Come!

Good news today from Dr. Doom. We got the results back from Bob's PET and CAT scans and there's no sign of cancer! and, actually, no real sign of new radiation damage, either. I was worried about the former but actually wanting the latter--radiation damage would send Bob to the hyperbaric chamber and I believed it would do him a world of good.

So, what about the title of this post? Let me back up a bit....

In 2009, Bob received his first hyperbaric treatment a.k.a. HBOT (hyperbaric oxygen therapy). At that time, his teeth had begun to fall out due to radiation damage from the cancer treatment he received in 2002 and HBOT is the FDA approved treatment for that problem. But a funny thing happened during his treatment. Most of you know that Bob had suffered a stroke (minor) in 2003 which left him with some minor coordination problems in his right hand/arm. During hyperbaric treatments, he totally regained the total use of his right hand/arm. It was nothing short of a miracle. I remember talking to the doctor in charge of hyperbarics at that time, and she told me that in some countries HBOT is considered an essential treatment for stroke survivors, often given immediately following a stroke, but not here in the good old USA, because the FDA hasn't approved it and insurance won't pay for it. What HBOT does is promote the growth of new blood vessels and, often in stroke, many of the actual brain cells are not dead but considered "dormant" because of the lack of blood flow. HBOT can promote the growth of new blood vessels to these areas and rejuvenate the brain cells.

Well, when Bob first had his stroke in October, I was like a demon asking, begging, pleading with every doctor to please get him to a hyperbaric chamber. They actually have a Hyperbaric Department at the hospital he was at, but, alas I couldn't get him over there. I even went so far as to talk to the director of the Hyperbaric Department, but to no avail. Constantly, I was told that the treatment was "too new", "too controversial", "not FDA approved" or "his insurance won't pay for it". It was very frustrating back then just knowing that a hyperbaric chamber sat in the same hospital as Bob and they wouldn't let him use it, unless I could pay for it myself and the hospital charges $1000/hour. I even checked into some private-pay clinics but found out that the cost there was $250.00/hour and he would need probably about 20 hours of treatments (or more) and there was just no way we could afford it. And if we had any credit, I would've taken out a loan, but alas our credit sucks...

So, today we went to see Dr. Doom and I has hoping and praying that his mouth pain was being caused by the radiation damage, but alas, Dr. Doom comes in the room all happy. No sign of cancer. (Great!) No sign of new radiation damage. (damn.) He says he thinks the mouth pain is "neuropathic" and we should go to his neurologist (already been there) and maybe get a prescription for neurotin (already is taking that).... Well.  I tell Dr. Doom that really, I was hoping that Bob could get some hyperbaric treatment. Really, it did him a world of good last time. I think it might help his mouth pain besides other things....  And Dr. Doom looks at me and says, "Well, there's a slight chance the pain is from radiation damage. I suppose we could give it a try. I could write a script if you want." Do I want?

GOD BLESS HIM! He told me he wasn't "optimistic" about it helping the mouth pain, but it couldn't hurt and it might help. I COULD KISS HIM!

So we have prescription in hand for HBOT with a diagnosis the FDA would approve of and I can't wait to get him over there and start the treatments. And I do believe it will help his mouth pain and his pressure sores and everything else. (I just wish I could have got him to HBOT earlier, and hope it's not "too late".)

So! It's been a good day at The Pink House.

Bob's New Move

He couldn't do this last week!

These past couple of weeks, we've been on our own---and it's actually kind of nice to have the house back to ourselves. No more strangers prancing through from the home health care agency! Except that now, I am "the therapists" and I've been doing my best to run Bob through his range-of-motion exercises every day.

Yesterday, he amazed me by bending that right knee without any help! I just had to get the camera out and ask him to do it again, so I could share my excitement with all of you!

This is a big improvement--previously, I had to push his knee up to bend it.

The paperwork is finally completed for Bayfront and next week, he has an evaluation for Outpatient Rehab. I pray that they can get him up and walking soon!

Stroke Changes Everything, Including the Cat

Ripley

This is the story of Ripley, who transformed from a furry miscreant to become the world's best therapy cat.

Ripley came to us via Cham Le, our neighbor across street. Cham Le is an interesting person in her own right, she fled from Vietnam on one of those last air lifts after the war. In Vietnam, she was quite wealthy, she owned a tavern--"Good business, American GI" she tells me with a wink, but she arrived in America penniless with her daughter (my age) and son (who has Downs Syndrome). She worked as a hotel maid for many years, saving her money and ultimately investing in real estate and now owns several apartment buildings. Last year, Cham Le heard that our 14-year-old cat, Prozac, had passed away (Yes, that was her name, so called because she made me happy) and Cham Le showed up on our doorstep carrying a little white furry bundle of joy. "Diane, you need new baby, no?" she said thrusting the two month old kitten into my hands. And what a kitten it was: pure white with brown ears and brown tail and stunning round blue eyes. That kitten was cute as a button, but alas, it was not Ripley, but Ripley's sister. (That kitten would later be adopted by another neighbor who named her "Buttons", because she really was, like I said, cute-as-a-button.) So, I held Ripley's darling little sister in my arms, my heart melting, as I explained to Cham Le that I was really not ready for a new kitten and besides, if we decided to get another cat, we wanted to get a male, only for the reason that our other cat, Zenith, is female and we thought she might get along better with a male.

"Oh, I have boy-cat. Come and see," Cham Le assured me. It turned out, Cham Lee had three kittens. She had adopted a stray cat who she found in the alley and turned out, it was pregnant.  A few days later, after Bob and I talked it over, we decided to go over to Cham Le's and check out her "boy-cat".

Ripley, 2 months old, March 2010
(yeah, I know, the date is wrong on the camera)

Cham Le showed us the kittens. The two females were adorable. Then, there was Ripley. He had a weird black blotch on his nose and white cheeks and a little thing like a tear drop by his left eye. And his eyes---his blue eyes were a bit freakish: slightly crossed and eerily human-looking. And I remember thinking, "oh no, we have to take the goofy-looking one if we want a male."

We almost said no. We almost left without him. But Cham Le said, "If you don't take, I don't know what to do. Might have to throw him out."
Well, that cinched it for me. Poor little thing! Though I could tell Bob was still having doubts until Cham Le offered us a guarantee: "You don't like, bring him back, OK?"

With that, Ripley made the trip across the street to his new home with us.

Ripley, doing "the polar bear", with Boomer

From the beginning, Ripley was "different". Immensely shy, clumsy and clueless. It took him a full two months to learn his name and I remember thinking, my god, not only is he goofy-looking but he's a bit stupid, too. And he didn't "meow",  he "peeped".  I mean really, the first time Ripley opened his mouth and squeaked "peep, peep" up at me, I nearly fell over backward. He didn't sound at all like a cat, more like a baby bird with laryngitis. Then, there's that weird "polar bear" dance he does.

And Ripley is a thief. Do Not leave your wristwatch on the night stand. It will not be there in the morning. Ditto--your glasses or car keys. Do not leave your purse open on the table, because Ripley will be in it and the next thing you know, your money is missing. I have personally seen Ripley with dollar bills clutched in his teeth as he sprints across the room.

And believe me, there were more than a few days I thought about taking Cham Le up on her "guarantee". Especially the day that Ripley pissed on the couch. And the day he tore up the kitchen rug. Bob, especially, did not care for Ripley, saying "that cat doesn't like me" or "there's something wrong with that cat." And it was true, for Ripley and Bob never really did hit it off.

Ripley grew up. Or I should say, first he grew long. At six months, he looked more like a furry white snake with legs than a cat. But he also grew a distinctive raccoon mask across his face, perhaps to match his bandit personality. Now, at a year old, his coat has changed colors and he really is a handsome lad. And I've seen his two "sisters" and, amazingly, he's much better looking than they are--truly he was the ugly duckling of the litter and has finally come into his own. He was almost 7 months old when Bob went into the hospital for surgery and subsequently had a stroke. Three months later, Bob would come home and both he and Ripley would be quite changed.

Those last days at the hospital, I knew Bob was looking forward to coming home to me and our pets, but most especially to seeing Zenith, our Siamese. One of the first clear sentences that Bob spoke to me was "I miss you and Zenith, too." So, I was looking forward to a happy homecoming for Bob and our pets. Boomer did not let me down, and covered Bob with kisses the minute I rolled his wheelchair in the back door. Zenith, on the other hand, fled. At four years old, she was freaked out by the changes in her "Dad". And then there was Ripley. I didn't expect much from Ripley, but what happened utterly amazed and astounded me.

Bob & Ripley: Nap Time

I don't know what came over Ripley. Was it the fact that he was now older and wiser? Or did Ripley sense some new purpose in his life? Whatever it was, Ripley quickly sized up the situation: the hospital bed, the wheelchair and Bob, and Ripley knew what he needed to do. Immediately, he jumped up on the hospital bed. And he's been Bob's constant companion ever since--sleeping with him every single night, keeping him company during the day and making Bob very very happy. And I know that Ripley is helping in Bob's recovery, for some days, when Bob is in a lot of pain, Ripley is the only one who can make Bob smile.

And now when I count our blessings, you can bet that Ripley is darn close to the top of that list. I am glad that we took home that "goofy-looking" kitten---even if he still is a thief. That last week of home health care, Ripley went into the nurse's handbag and took off with her stethoscope. I had to chase him around the house to get it back.

Seems Like He's Giving Up

It's been a frustrating few days, Bob has been cranky and uncooperative. Without the home therapists here, I am trying my best to do their jobs. But--- It's difficult to do therapy with an uncooperative patient. He doesn't want to do the speech therapy because his mouth hurts. He doesn't want to do standing practice because his foot hurts. And don't even go near that right arm---if I do, he'll pick it up by the wrist, hold it in the air for a few seconds then let it flop to the bed like a dead fish. Then, he gives me that look and rolls his eyes.... I have tried begging, pleading, cajoling, rationalizing, even threatening: "Do you want to end up in a nursing home?" "Yes," he tells me. I am at the end of my rope.

This morning I woke up around 4:30 with tears in my eyes. Outside, I could hear the rain beating on the roof. I laid there, trying not to make a sound, someone once told me at the hospital "Don't let your husband see you cry. It'll make everything worse." Then, I hear him: "Yoo Hoo! Hello? Yoo Hoo!" I drag myself out of bed and find that he has spilled the urinal (again) and he is soaked and the bed is soaked. So, I clean him up, change his diaper, and change the sheets from under him and crawl back into bed and lay there in the dark. I can't sleep. So, I figure, I might as well get up and take the dog out.

I go to the dresser, turn the night light on so I can fish out socks, underwear, and I see the little card I have propped up in front of our wedding picture. I have carried this card for 22 years, it was given to me by a co-worker who was a devout Buddhist. On the card is a Buddhist mantra. My co-worker gave this to me when I was going through my divorce and she told me that if I ever felt down, sad, lonely or frustrated, to chant this mantra and it would put me in tune with the vibrations of the universe and, if nothing else, make me feel better. She assured me that you did not need to be a Buddhist for it to work. So, once again, I look at this old card, then I dress and grab the leash and Boomer and I head out into the dark, damp morning. As we walk, I recite the mantra. It does make me feel a little better. Half-way through our morning stroll, the rain stops, the sky lightens and I look to the east and see the most amazing sunrise. All of the clouds on the horizon are aglow: pink, red, orange, yellow and gold. Rays of sunshine are sprouting over the rooftops. And Boomer starts to jump around: a mad, happy dance. Which makes me laugh. And I think. There it is. A sign. Everything will work out fine.

So, today is a new day and the beginning of a new week. And I will try again. Maybe I can cajole him into some exercises. Perhaps a game of Scrabble (he did well last week). Tomorrow Bob is scheduled for a PET scan and Wednesday, he has a CAT scan. And hopefully Bayfront will get the damnable paperwork processed this week and I can get him into Outpatient Rehab. Maybe he'll be more cooperative with a therapist who is not me.

For those of you interested: here is a scan of that 22 year old card. The words are pronounced thus:

Nam (as in Vietnam)
Myoho (Me-O-Ho)
Renge (Rin Gay)
KYO (Key-O)

Say it out loud. It has a nice vibration to it. And heck, it does make you feel better.

By the way, is anybody here? Haven't had a comment here all week. As Bob would say, "Yoo Hoo! Hello? Yoo Hoo!" Drop me a comment. Just say hello. If for no other reason, it makes me feel good. thanks

More on Mouth Pain

We are still dealing with the mysterious mouth pain, and Bob is suffering terribly. Somedays, it's all I hear: "my mouth, my mouth" and "hurts, hurts". I am at my wit's end and wish these doctors would get to the bottom of it and find him some relief.

Last week, we went back to the Pain Management doctor. He had done two nerve block injections in Bob's jaw, (to the tune of $30.00 a pop) and neither worked. His plan was to do three more injections, but Bob and I "discussed" this, and since the injections weren't working, I figured it was a waste of time and money to do any more. When I was registering Bob at the counter, the receptionist gave me a "consent form" for another injection and I told her that we had decided against another injection but wanted to pick up his pain medication scripts and talk to the doctor about any alternatives. So, the receptionist yells to someone in the back room "No injection for Robert!"

Of course, Bob heard this. Immediately, he began yelling "Injection! Injection!" Poor Bob, in his wheelchair, pulling at the corners of his mouth with his fingers, showing everyone in the waiting room his gums. Tears begin rolling down his checks and he's crying "My mouth! My mouth! HURTS!" and this is in a full waiting room and, of course, everyone is staring at me like I am the evil witch who won't let this poor man have his mouth injection.

Aphasia: In His Own Words

The other day, Bob and I were sitting on the front porch.  I thought I'd share our "conversation," to give you an idea of what he goes through:

Bob: "The words. The words." He taps his finger on his forehead.

Me: "Words?"

Bob: "The words!" Tapping his forehead, again, but more forcefully. "I try to tell you..." His voice trails off. He looks at me.

"I'm listening. Try again."

"My brain..." He rubs his forehead. "Messed. Up." He looks down into his lap, at his limp right arm.

"Go on."

"The words!" He points then to the table on the porch, which contains a small lamp, a box of tissue and a little statue of two frogs hugging each other. I look at the table. "The words?" he says again, his finger shakes as he points.

"This?" I pick up the frogs.

"Yes."

"Frogs," I say.

"Frrr.... Frrrrro... Fur-fur-fur..."

"Frogs," I say again, but more slowly.

"Frogs." He slaps himself on the forehead. "Duh! Frogs." He shakes his head as if this was absurd. As if the whole idea of "frogs" was absurd.  He shrugs his one good shoulder. He says, "Can't. Remember. Words."

"Don't worry, it'll come back to you. It'll get better."

"I know," he hangs his head. Slowly, he says, "Sucks."

Home Health Care Bails Out

Well, Home Health Care has left us high and dry. First, the occupational therapist with her "dreaded plateau" and next the physical therapist, who asked for more visits but was denied, then the nurses and home health aide and last, but not least, the speech therapist.

All gone. We are suddenly on our own. Scary, that.

And believe me, not for my lack of trying, fighting and arguing all the way.

And now, I have to figure what to do and how to do it. The Social Worker got Bob an application for Outpatient Rehab Medical Assistance, which was accepted but when I called I found out that they do not do speech/swallow therapy, and, in fact, said they do not really work with stroke patients, and so we have to find another place to go that does not cost $30.00/visit. The hospital suggested another rehab facility. And I am in the middle of trying to get a hold of people there---you'd think the whole place was occupied by nothing but empty offices and voice mail machines.

Meanwhile, I am overwhelmed without an iota of help.