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Thursday, January 31, 2013

A Typical Day is Worth--- what?

As part of the process to figure out how much money it will take to take care of Bob for the rest of his life, the attorney's office asked me to keep track of one entire day's worth of all the "personal care" I do for Bob on a typical day. They wanted exact times and duties. So I did, and thought I'd share it here:

January 29, 2013
A Typical Day
Diane’s Caregiving Duties

12:05 a.m.                    Bob wakes me up with arm pain. Heat heating pad in microwave and apply heat pad to arm.

6:30-6:55 a.m.              Disconnect feeding pump. Flush tube with warm water.  Clean tube with cannula brush. Change bed pad. Empty night urinal. Boost (I use a draw sheet) and reposition in bed. Crush and dissolve medications. Syringe into feeding tube.

8:00 a.m.                       Empty urinal and rinse. Supply towels and help wipe off.

8:30 a.m.                       Set Bob up with art supplies: sketchpad on clipboard and pencils

9:00 a.m.                       Empty urinal etc.

9:45 a.m.                       Sharpen pencils per Bob’s request.

10:30-11:00 a.m.          Fold laundry, mostly towels and Bob’s bed pads and sheets.

10:45 a.m.                    Accept Walgreens delivery at door, sign and pay for scripts.

11:00 a.m.                    Gather supplies for bed bath.

11:05 a.m.                    Get fresh water and a fresh Den-Tip swab at Bob’s request.

11:09 a.m.                    Empty urinal, etc.

11:10-11:55 a.m.          Bed bath, then dress.         

11:45 a.m.                    Empty urinal, etc.

11:55-11:59 a.m.          Transfer from bed to wheelchair.

11:59-12:06 p.m.          Perform manual neck stretching exercises with wheelchair tipped on bed. (Trained by OT to do this.)

12:06 p.m.                    Brush hair, secure ponytail, get sunglasses, wheel out to front porch.

12:10 p.m.                    Sit and “chat” for a few minutes.

12:15-12:25 p.m.          Strip hospital bed, flip gel overlay, make bed with new sheets, pads, etc.

12:30-12:45 p.m.          Wheel back into house. Transfer into bed.

12:45 p.m.                     Start new load of laundry.

12:48-1:00 p.m.             Crush medications, dissolve in water, prepare syringes. Administer medications through feeding tube.

1:00 p.m.                       Empty urinal, etc.

1:05-1:15 p.m.               Change pants including underwear. Boost and reposition in bed.

1:15 p.m.                       Throw wash in dryer.

1:16 p.m.                       Wipe down Bob’s bedside table, he spilled water.

1:18 p.m.                       Call the Lab and schedule PT/INR home visits to start next week under new/old insurance plan. (Yes, I switched his insurance back after I found out that the hospital and insurance company kissed and made up! After all that mess I went through..... aaargh)

1:25-3:45 p.m.               Help Bob with exercises for physical therapy, range of motion for occupational therapy, exercises for speech and swallow therapy.

2:03 p.m.                       Empty urinal, etc.

3:02 p.m.                       Empty urinal, etc.

3:45-4:00 p.m.               Change clothes to hospital gown. Boost and reposition in bed.

4:00 p.m.                       Empty urinal, etc.

4:10-4:15 p.m.               Boost and reposition in bed. Put on hand splint.

5:00 p.m.                       Empty urinal, etc.

6:16 p.m.                       Empty urinal, etc.

6:17-6:45 p.m.               Set up night feeding pump. Crush and dissolve medications, prepare syringes, administer medications through feeding tube. Connect pump and start pump. Boost and reposition in bed. Get Bob a fresh Den-Tip swab.                   

8:05 p.m.                       Empty urinal, etc.

9:30-9:40 p.m.               Boost and reposition in bed. Tuck in for night. Get night spillproof urinal. Supply blankets, etc. Turn off lights.

12:45 a.m.                     Bob is cold. Get up and get extra blanket. Turn off ceiling fan.

5:30 a.m.                       Bob is warm. Get up and turn on ceiling fan. Take away extra blanket.

6:30 a.m.                       New day! Start over. Disconnect feeding pump etc. etc…..

Other Regular Caregiving Duties

Weekly                         Schedule all transport rides, make appointments when needed, order prescription refills, fill three weekly pill dispensers (morning, noon, night). Chart bowel movements and administer laxative when needed. Apply pain patches every 72 hours.

Twice Weekly               Change diaper or bed pan, clean up afterwards. (Bowel movements.)

Thrice Weekly               Wash hair at kitchen sink. This takes 20 minutes or so.

1-5 times monthly          Take Bob to doctor’s appointments. Trips take all afternoon on wheelchair transport, usually 1-4 p.m.

2-3 times weekly          Take Bob to therapy appointments, if/when scheduled.


The idea here is that they want to figure out how much it would cost to "replace" me! 
There is also talk of asking for the hospital to pay me back wages for the last two years+.

hmmmm, wonder how much that would be?


Saturday, January 26, 2013


This is Bob's latest drawing which he calls "Brain". And yes, before anyone asks, he is drawing with his left (non-dominant) hand!

(click to enlarge)

Monday, January 21, 2013

On The Battle Front

So the other day, I find myself in the middle of the living room, fists clenched in rage, screaming at the top of my lungs: 

This was not an attempt at "primal scream therapy" but a reaction to the latest developments in the series of developments that have been occurring over the past month.

This was a reaction to our messed up, corporate-run, money-grubbing health care system.

Though, I must admit, screaming did momentarily feel rather good... But don't tell them that. They'll bill me for a therapy session.

Since December, I have been trying to achieve three simple things under this new medicare insurance plan. They are:

1. Order/get Bob's nutrition/feeding tube supplies
2. Continue Bob's home draw for PT/INR blood work
3. Get Bob back into rehab

This should be simple stuff.

But alas it's been nothing but a battle.... make that three battles...

On The Home Draw front:

In our last episode, you will remember that Dr. Big Cheese had refused to sign the referral form sent by the insurance company. Bob's regular doctor was, first, on vacation. Then, called off to cover hospital rounds for another doctor on vacation. Meanwhile, I am getting all this conflicting information from various nurses in the doctor's office:

Nurse 1: It is NOT our office policy to order home draws through home health agencies.

Nurse 2: A home health care agency will NOT send a nurse to do PT/INR. They just don't do it.

Nurse 3: You have to have "two skills" for a home health care nurse to come to your house. Does Bob have an open wound? If he does, we can send a home health care nurse for wound care and PT/INR.

(okay, get a knife. I'll give him a wound....)

Nurse 4: I'm sorry, but his insurance WILL NOT PAY for a home health care nurse for PT/INR. Trust me on this one. I've dealt with it before.

Finally, finally, finally, last week Bob's doctor returned to the office AND signed the referral. Yes! But, the referral then went to The Referral Department. The Referral Department sent it to a place called Associated Nursing Care (or something like that). I call Associated and they tell me, they never received the referral. Plus, they (Associated) do not take Bob's insurance...... so, I'm back on the phone to The Referral Department to tell them they didn't send it and, by the way, it's the wrong place to send it to. So, they are going to send it to another place.

Meanwhile: On the Feeding Tube Supplies Front:

The infusion pharmacy where Bob gets his supplies tried to run the authorization through and it was denied by the insurance company because Bob is "over the age of 24" and does not have a "congenital birth defect called [insert some long medical term here]". The pharmacist tells me to call the insurance company because they are not following "medicare guidelines" on this one. I try to call the insurance company but keep getting a recording saying that I am "out of the area" and can't make the call. So I call the insurance agent who signed us up, she gives me a number to call for a place called Care Centrix.

I call Care Centrix and they tell me they need the script for the feeding tube supplies and they need to do the authorization. I tell them the infusion pharmacy has the script, plus Bob's doctor is on vacation so I won't be able to get a script until god knows when. But why do they need a script if the pharmacy already has it? They then tell me our infusion pharmacy is "out-of-network" and we cannot use it. I tell them, no it is not. They then tell me that Bob's doctor is also "out-of-network". I tell her that Bob's doctor is NOT out-of-network because, you know, I put Bob on this STUPID INSURANCE PLAN because his doctor and pharmacy WERE LISTED IN-NETWORK. Then, she tells me that they might be in-network for the insurance company and they not in-network for Care Centrix.

Huh? By now, I am completely confused.

So, I call the infusion pharmacy back and they tell me that they are certainly in-network and that I don't have to go through "Care Centrix" which is just a middleman type company contracted by the insurance company. They work like a referral department. Jeepers. So, now I am supposed to get Bob's doctor (who was still out of the office) to sign a "Request for an Urgent Medical Review" to be sent to the insurance company. I call the doctor's office and talk to someone in "Authorizations" and give her the info and she assures me she will handle this.

Meanwhile, back at The Rehab Front:

Outpatient Rehab has not received the referral for PT from The Referral Department. So I have to call The Referral Department again and ask them to fax another referral for PT.

Then, back at The Home Draw Front:

The Referral Department sends the home draw referral to another agency, who I call and find out that a) they never received a referral, and b) by the way, they do not do PT/INR. I need to get a lab to do this. This person also tells me that no agency will send a nurse just for PT/INR, they need to be doing at least two "skills" etc. etc....

I am beginning to doubt myself as everyone is telling me this is not going to work.

So I call The Home Health Care Department of the insurance company whom I talked to once before, who told me that they would pay for a home health nurse to do the PT/INR and ask where I can have The Referral Department fax a referral. She gives me a number and I call The Referral Department back with this information. 

Meanwhile, on The Feeding Tube Supplies Front:

I am running out of Jevity for Bob. I already cut him back to four cans a day (from five a day) and I now have only 2 days worth of feeding tube nutrition. I call the pharmacy, have they heard anything? No they haven't, but she finds two cases of "donated" Jevity and says she can send them to me but I have to pay a $10 delivery charge. I take the two cases.

I call the Authorization Department and she tells me she has filled out all the required forms and the doctor has indeed been in and signed them and she faxed them to the insurance company. And not to worry...

Meanwhile, on The Rehab Front: 

They received a referral with the wrong insurance information on it and they need a new one. So, I call The Referral Department again...

Back on The Feeding Tube Supplies Front: 

I get a call from Care Centrix leaving a message to return their call. So I call. It turns out the Authorization Department has sent all the forms to Care Centrix instead of where ever they were supposed to go. And after being transferred six million times, I get connected to someone who tells me that the forms are all addressed to our infusion pharmacy, not Care Centrix and that it seems Authorizations sent the infusion pharmacy paperwork to them by mistake.

By now, I'm tearing out my hair....

So I call The Authorization Department who tells me they are sure they sent it to the right place, as she talked to someone at the insurance company. 

So I call our infusion pharmacy who says she'll call the Authorization Department and try to figure out what's going on....

Meanwhile, back on The Home Draw Front:

Finally, I get a call from a home health agency telling me they are sending a nurse to do Bob's PT/INR!

And whoo hoo! I am dancing through the house, a sort of primal dance therapy--if you will, because I won this battle!!!! Yes! Yes! Yes! And all those nurses can take a flying you-know-what, because I was right!!!

Meanwhile,  on The Rehab Front:

I call Outpatient Rehab to find out if they got the new referral with the right insurance information and talk to someone new in the office who tells me that she doesn't know a thing about this and can she have a therapist return my call?

 Huh? This makes no sense to me at all.

Then, back on The Feeding Tube Supplies Front:

The infusion pharmacy calls and tells me that the Authorization Department not only sent the forms to the wrong place but sent the wrong forms. They were supposed to request a "Urgent Medical Review" and sent instead a "Pre-authorization Form". The infusion pharmacy assures me that The Authorization Department now knows what forms to send and where to send them and they are going to take care of this...

I am beginning to feel like I landed smack dab in the middle of Kafka's THE TRIAL....

Then, on The Home Draw Front:

Friday, the nurse shows up to test Bob's PT/INR (I could just kiss her!) which is sky-high, which I was afraid it might be since he hasn't had a test for three weeks, so I'm back to adjusting the warfarin dosage, back to weekly testing.  Then the nurse looks at the authorization forms discovers the insurance company only approved THREE VISITS.  And this for a weekly PT/INR.

Good grief.

Meanwhile, back on The Rehab Front:

I call Outpatient Rehab back, hoping and praying to get connected to one of the usual women in the office who know what's what. I do. And find out that they finally got the right referral form and are in the process of "verifying insurance" and getting "authorization".

And on The Feeding Tube Supplies Front:

This morning, I called the insurance company, who then connected me with Care Centrix again, who told me they received a "medically necessary authorization" to ship Bob's feeding tube supplies but had closed Bob's case as I wanted to use our infusion pharmacy which is "out-of-network"...


By the way, the reason I want to use our infusion pharmacy is because they cover the co-pay for Bob's supplies as a charitable donation.

So I called the infusion pharmacy and left a message....

And now, right now, I am fully dressed in battle armor waiting for a return call.

Things should not be this difficult.

Thursday, January 17, 2013

Bob Turns 54

Yesterday was Bob's 54th birthday. That morning, I asked him how old he was. He told me that he was "two."

I told him that he looked a bit older than two years old. He thought about it, then said, "oh yeah, twelve!"

All righty.

I wanted to do something special for him so I asked him if he'd like to go to the Starbucks down the street. I wasn't sure if he would, because he hasn't eaten/drinken anything since his last swallow video. I'm not sure if this is psychological (a giving up on swallow practice) or if he just plain doesn't have an appetite, but I don't push him. No need to risk aspiration if he's not into it.... So I was quite pleased when he said, "very nice" and "I like that." Then, he even requested "vanilla" for a coffee flavor.

But I tell you, the best thing that happened yesterday was not Starbucks, but this:

Bob & Zenith

I will tell you why this is so special.

Bob & Zenith, pre-stroke
Bob had always wanted a Siamese cat but I have always been a rescuer of strays and told him that I did not want to buy a purebred cat when so many shelter cats needed homes. So we were both delighted when we found Zenith (a 10 week old Snowshoe Siamese) at the SPCA shelter. Bob and Zenith became fast friends. Early on, Bob taught Zenith to perch on his shoulder. Every night, when Bob came home from work, Zenith was at the door waiting for him. Then she would immediately launch herself onto his shoulder, (no small feat for a kitten since Bob is 6'3") and curl around his neck. He would take her for "a ride".  All the while, Bob would chat away to Zenith, often singing her songs. It was a nightly ritual.  I tell you, people used to stop and stare at this tall blonde guy singing to a Siamese cat curled around his neck.

Then Bob was hospitalized for over two months. During that time, Zenith often wandered the house, plaintively crying. But when Bob finally came home, I was dismayed that Zenith was terribly frightened of him. She could tell that Bob was not the same. And she was frightened by the new hospital bed and medical equipment making strange noises, and strangers coming and going and even the wheelchair. She avoided Bob like the plague.... Which truly broke his heart. Mine too.

Zenith checking out Bob's wheelchair.
Then yesterday, after I got Bob into his wheelchair and while I was brushing his hair, Zenith jumped up on Bob's bed. I could see her watching Bob before she tentatively, oh so tentatively reached out with her paw and gently touched Bob's knee. Then, slowly, oh so slowly, she climbed on his lap. For the first time, since the stroke. It's been two years.

Then, Zenith proceeded to check out Bob's wheelchair.

And I grabbed the camera.

And Bob, as you can tell by his expression, was absolutely delighted.

Afterwards, we went to Starbucks. Where Bob enjoyed a thickened vanilla latte and managed to quaff about 1/8 of a cup. Without a single spill. Without aspirating.

Happy Birthday Bob!

All in all, a very happy birthday.

Sunday, January 13, 2013


On our honeymoon, at the historic White Horse Tavern
The other day, Barb left a comment on my blog which asked me, in so many words, was I happy?

I have thought a lot about that since. You know, walking the dog, doing the endless laundry, I ask myself, Diane, are you happy?

And I'm really not sure...

Webster's defines happiness as:

1: a state of well-being and contentment; also: a pleasurable satisfaction 2: aptness

Which makes me wonder, first, just what the heck is "aptness" and what's that got to do with happiness?

But anyway...

I knew happiness. I knew it quite well. Bob and I were really very happy together before the stroke.

Hamming it up with a mermaid at Weeki Wachee
Happiness to me is doing the things you love with the one you love. Bob and I used to love to go on road trips, visiting out-of-the-way antique shops and junk shops and flea markets. Always on the hunt for a big find. We were avid collectors of anything antique, old or quirky.

We absolutely loved tacky Florida tourist traps. Like the one above.

And historic sites.

And mom and pop diners.

On the Gulf of Mexico
And The Gulf of Mexico.

And just being together. Living life. Bob always told me, "Life is an adventure!" He always told me, "Follow your dreams." I loved that about him. As I was always a bit more reserved. He let me spread my wings. Be myself. Think of myself as a writer, and not just a woman who writes as a hobby.

Yes, I do know this: once, I was very very happy. I think these pictures show it.

But am I happy now? Since the stroke? That's a good question. Especially for a gal who was up at 1:30 a.m. cleaning diarrhea off the bed sheets this morning.

Maybe a better question would be, am I unhappy?

Webster's defines unhappy as:

1: unlucky, unfortunate 2: sad, miserable 


Certainly we've been unlucky and unfortunate, but I am certainly not sad or miserable. At least, not often. Not always...

So if one is not "unhappy" does that make one "happy"?

Which brings me back to, well, what the heck is "aptness" anyway? So I have to look that up too:

Webster's defines apt/aptness as:

1: well adapted: suitable 2: having an habitual tendency 3: quick to learn.

Hmm, guess that does describe me.

So to answer the question, according to Webster's, I am quite apt, so that does make me happy, after all. I think...

Thursday, January 10, 2013

Starting the New Year off with a BANG!

And the "BANG!" was the sound of the neighbor's sewer cap blasting into the air, followed by a flood of water into their yard and a huge geyser of sewage spewing forth from their downstairs toilet . This happened after I ran a load of laundry and, um, flushed our toilet....

And all this happened after I had been experiencing slow running drains and our toilet backing up and making strange gurgling sounds for a couple weeks, and called a plumber in to look at the problem. That plumber told me I needed the sewer line "roto-rootered" which he did for $200.00. He then ran a video scope down the pipes and told me that one of my sewer pipes had "collapsed" and my sewer line would need to be replaced to the tune of $4,000.

So the first thing I did was call a couple of other plumbers--well, that's not true. The first thing I did was totally freak out.  The second thing I did was call a couple of plumbers to get a second opinion and a couple more estimates.  The third thing I did was call the city to look into an "emergency loan" for "low income homeowners" needing "emergency repairs". The city told me that we would have to qualify for that emergency loan and the application process would take 2-3 months. Two to three months? I'm thinking, I could be standing knee deep in water in two-three months....

The two plumbers arrive (oddly at the same time!) and both run a video scope down the sewer line and both find there is no "collapsed" pipe but a bunch of tree roots growing in the pipes. Both, however, agree that there is a place in the pipeline where water is "standing" (not good) and they cannot see beyond this and don't know what exactly is going on.

So, I hired the plumber with the best bid to "hydro-jet" the line in order to clear out the roots and get a clearer picture of what was going. And thank you, mom and dad, for paying for this, because otherwise, I tell you, I don't know what I would've done. Perhaps jump off a cliff.  Anyway...

That was Friday. The work was scheduled for Tuesday. On Sunday, the neighbor's sewer cap became airborne.

It turns out that quite strangely our sewer pipe is connected to the neighbor's sewer pipe which is connected to another neighbor's sewer pipe before connecting to the "city tap". The city calls this a "shared line"--yes, I called the city and talked to them. They told me it's not the city's problem but the property owners and we have to "work out" the repairs between us. Which will be hard to do as the third house is vacant, being auctioned off for back taxes next month....

On Tuesday, my part of the line was cleared out, it was found that the main problem lies not within our sewer pipe but in the neighbor's, and if he doesn't fix it, well, I may just be standing knee deep in water....  The neighbor tells me that he's going to "look into it" because he sincerely thinks the problem may be in the part of the line behind the vacant/county owned house. The plumber advised me to "get a lawyer".... jeepers.

So, because I promised everyone involved (plumbers, owner of the property next door) that I would go "easy" on the plumbing until the problem is fixed--I am now sneaking around like a thief trying to wash my laundry (small loads) at odd hours (think: midnight, 6 a.m.) with the hope that no one will be using the plumbing except me and it won't back up, or if the sewage does back up in the neighbors' house and yard, they, um, might sleep through it. Ha!

Because I have to do daily laundry. I mean I have a daily laundry basket of urine soaked bed pads and towels. This from Bob, not me, in case you were wondering.

I feel I'm doing well if I don't hear any screams coming from next door... So far, so good.

And while I'm dealing with this plumbing nightmare, I get a call from the infusion pharmacy that delivers Bob's feeding tube supplies. They tell me that the new insurance will not pay for Bob's "nutrition formula" (i.e. the Jevity) because he is "over the age of 25" and the stuff costs $156.00 a month -- and do I want them to send it over anyway? GA!  The insurance company, however, will pay for the feeding bags, syringes, gauze pads, just not the nutrition formula. Which really makes no darn sense at all.

So I'm on the phone trying to get this straightened out, because the insurance agent assured me that this stuff would be covered... After going round and round with multiple phone calls, back and forth, insurance agent, insurance company, infusion pharmacy and some other strange place I was told to call and just completely confused me,  I finally learned that the insurance company wants "proof of medical necessity" before they will consider covering the cost of the formula. I now have asked the doctor's office to send a request for an "Urgent Medical Review" to the insurance company along with Bob's diagnosis codes, etc.  Meanwhile, I put Bob on a diet so I can save up some Jevity. He only has an eight day supply left! It seems to me one should not have to jump through these hoops. I mean, I ask you: why on earth would a doctor order feeding tube nutrition and supplies if they were NOT medically necessary???? And what am I supposed to do? Starve Bob until this is figured out??

And add to that, I am still fighting for a home draw for Bob's weekly blood test. The last battle scene this week went like this:

Nurse: I'm calling to tell you that the insurance will not pay for a home draw, so I'm sending you a lab slip to take with you to the lab.

Me: What?!!!!

Nurse: So you take the lab slip to any lab you choose---

Me: But the insurance company told me they would pay for a home health nurse to do his weekly PT/INR.

Nurse: I'm sorry, but they will not send a home health nurse just for PT/INR. It's not considered a skill etc. etc. etc., blah blah blah

Me: silently GAAAAAAA!!! (because I've heard this argument from their office three times before)

Nurse: blah blah blah -- In order to have home health care there must be at least two skills required by a nurse blah blah blah

Me: Look, the insurance company TOLD ME they would pay for this if the doctor ordered it.

Nurse: I'm sorry, they were wrong.

Me: But it was the INSURANCE COMPANY that TOLD ME they would pay for it if the doctor ordered it. I think that the insurance company should know what the insurance company will pay for!

Nurse: But if they were going to pay for it, you would have already been contacted by a home health care agency!

Me: I was contacted by the INSURANCE COMPANY, who told me that they cancelled the order because Dr. Big Cheese at your office refused to sign the referral!

Nurse: (long pause) Can you hold on a minute?

So now I'm told that the referral is waiting in Bob's regular doctor's mailbox for him to sign. I asked when that doctor will be in but am told they are unsure because he's been covering for someone else at the hospital who is on vacation.... So, no blood tests this week. We'll see what happens next.

I tell you, if I'm not out in the yard with plumbers, I'm spending all my time on the phone lately.

Never a dull moment, here at The Pink House!

Sunday, January 6, 2013

Walking in the Early Morning Fog

Oak tree draped with Spanish Moss
 in our neighborhood this a.m.
This morning, I took Boomer for a walk. The fog was so thick, you could hardly see to the end of the block. It felt like walking through a stage set of the first scene in a horror movie. It was eerie and haunting and sadly beautiful.

Which rather put me in a reflective mood...

about starting a new year and not knowing what lies ahead...

And for a minute, I thought it was raining. I could hear the rain, but couldn't see it. Even Boomer looked up, expectant of rain. Then I realized it was only the sound of the leaves trembling in the breeze...

Later, Boomer and I turned a corner and there ahead of us, in the alley, sat a cat in the fog. And I thought, oh look, a kitty. But as we neared it, I could tell something was wrong with that cat. Then the cat looked up at us with its pale white face and pointy ears and I was startled to realize it wasn't a cat at all, but a possum. And I thought, sometimes, things aren't what they appear to be. Especially in the fog...

Last week, Bob and I went to see Dr. Doom. He's the ear, nose, throat doctor. This was a follow-up from the video swallow test that Bob had in November. I knew the test results weren't good as I had spoken with the speech pathologist afterwards, but to see this stuff in writing. To see "The Final Report" just sort of brought things home.

Phrases like: "severe impairment in the pharyngeal phase" and "decreased laryngeal elevation" and "delayed swallow reflex."

Like: "penetration, silent and weak". Or "pharyngeal constriction".

The Pink House on the Corner in the morning fog
And: "spillage into valleculae", "spillage into pyriform sinuses", "labial spillage".

And this: "There was significant pooling of matter in the valleculae and pyriforms that could be released only a small amount at a time, with multiple consecutive effortful swallows. The effort he must make will not release enough for nutrition and hydration and he will aspirate quickly from exhaustion..."

And finally this conclusion:  "He will not be able to nourish/hydrate himself by mouth and with even slightly greater consumption by mouth, he will aspirate."

The doctor went through the test results and gave me a copy. He called the results "terrible" and he didn't see a reason for a follow-up appointment, or a reason for another video test, unless, of course, I wanted one in a year or so. But he pretty well thought it was hopeless, because Bob has done every known therapy for swallowing, all the exercises and even the vital stim (electrical stimulation of the throat).

This morning, while walking through the fog, I told myself that one must accept some things in life. That there are some things that no matter how hard you try, you just cannot change. Like fog. Or the inability to swallow.
Bob's peg tube.

That there are worse things than having a feeding tube for the rest of your life....

When I got home, after I fed the dog, I sat next to Bob as I usually do in the morning. He looked at me and asked, "Sad?"

I said, "No, not sad. Just thinking."

He asked, "Thinking?"

"About stuff. About what to blog about today."

He said, "Oh, happy! Happy, happy!"

"Write something happy? Happy about what?"

"Well," he said, then thought about it. Then he pointed to his paralyzed leg and said, "Legs... and um... Ouch!" he pointed to his good leg which has been bothering him, "and..." he pointed to his paralyzed arm, "Arms. And um.... you know?" He tried to lift his head into a neutral position. "Creeek creeek!" he said as his neck fell back into its usual bent position. Then he said with a half shrug, "Oh well!"

I looked at him skeptically, because none of this was "happy" stuff.  I said, "Well, that will surely make everyone reading my blog happy."

"Well?" he said, then made a sort of grand sweeping motion with his good hand. A motion taking in and indicating the whole room, maybe the whole house, or maybe just me and him. He said, "But happy!"

Which made me smile.

"I love you," I said.

And he said, "I love you more! And more!  And more-and-more-and-more!"

You know, I tell you, you gotta love this guy. Sometimes, I think, this stroke stuff bothers me more than him....

And I remind myself, this morning, that fog does eventually lift. That sometimes, you think it's raining, when it's really only the leaves rustling in the trees... That a cat in the fog can turn into a possum. That things aren't necessarily what they appear to be. Meanwhile, it might be foggy and eerie and haunting and sad, and you can't see the road ahead of you. But if you look at things in the right perspective, you just might find something beautiful and real right in front of you.