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Sunday, June 30, 2013

Neighborhood News

The big news here in the neighborhood is that house next door to us has been...

and is now slated for demolition.

Now, those of you who have actually visited The Pink House on the Corner might be wondering which house I'm talking about, so I will clarify it here. I'm talking about The Window Pisser's house. For those of you who have no idea what I'm talking about, I will tell you the story of The Window Pisser and his house:

When Bob and I first moved into The Pink House on the Corner, I was up early one morning walking Boomer past the neighbor's house...

Boomer was doing what Boomer does best, sniffing around the trees on the boulevard, when I heard a strange trickling of water. When I looked up, I was rather startled to see a large, naked torso of a man pressed up against the window screen.

My first thought was oh my god, the neighbor is a flasher!!!! Well, that's not exactly true. My first thought was GAAA!!!!

My second thought was oh my god, the neighbor is a flasher!!!

It was then I realized that this man was not just an exhibitionist. Remember that trickle of water? This man was actually urinating out of the window, through the screen, and into the bushes.

After I got over my initial shock, I quickly yanked Boomer by the leash and swiftly moved down the street. I began to wonder just what kind of neighborhood we had moved into.

When I got home, I told Bob that he would never believe what I just saw. Thus, our neighbor (whose name we did not know at that time) acquired the nickname of "The Window Pisser". And the name stuck.

Now, The Window Pisser had bought the house next door to us that very same year which we bought our house. His house was a cute 1920's bungalow built by the same man who built our house and The Window Pisser paid $117,000 for it. Then he commenced on "fixing it up"....

First, he stuccoed the house, which believe me, did nothing for it's character or charm.  Then he changed out some of the windows,  he did this work himself and some of them look, well, sort of cattywampus. Not to mention the foam insulation you can see between the cracks. After that, he added a large deck which the city promptly made him tear off because it was too close to the property line and he, well, forgot to get a building permit. Next, he installed a crooked fence from mismatched fence parts he salvaged from somewhere. And he put in an "above ground swimming pool" which was constructed from what looked like two old hot tubs welded together and surrounded by unfinished plywood. The final crowning touch was to put sheets of plywood on the ground and roll astro turf over the entire yard.

I tell you, he was, for a long time, the talk of the neighborhood. No one had ever seen someone stick so much money and time into a house only to make it look worse and worse...

Then, a few years ago, the bank foreclosed and The Window Pisser moved.  And a For Sale sign went up. The asking price was $37,000.

And nothing happened. Except the front porch steps rotted and collapsed. And the plywood in the yard rotted. And homeless squatters moved in. Windows were broken out. Finally, last year, the squatters set the place afire one night.

This month, the city condemned the property and it looks like it will be torn down and the vacant lot will be sold.  And I'm thinking, hmmmm, an empty lot next door. And I have an idea. Which is that we should buy The Window Pisser's lot as it's adjacent to our back yard. We could put in a real in-ground swimming pool for aqua therapy and build a small guest house with an attached but separate therapy/exercise room and a wheelchair accessible shower...

I tell this idea to Chris, who sits with Bob when I run errands. She says, "If you build a guest house and a swimming pool, I'm moving in as your permanent guest!"

I tell this idea to Bob, who says, "Nice ...... Dream...."

But it is nice to dream...

Though whatever happens, it will be nice to have that eyesore of a house gone.

Tuesday, June 25, 2013

Carmel Corn

I tell you, if back in 2010, someone had told me that one day, one day in the not-so-distant future, the words "carmel corn" would bring me to tears---well, I would have laughed out loud.

Or if that same person had told me that I would get a tear in my eye while watching a cooking show---well, I would have thought that person to be quite daft.

Back then, I didn't realize what a big part of life involves eating food. Especially holidays and celebrations. I didn't realize how life revolves around food. How cooking a meal for someone is, truly, an act of love.

Or how everyday, the media bombards you with images of food. I mean, every single movie we watch has scene upon scene of people eating food. And about half of the advertisements on the radio are about food. And the newspaper is filled with articles and ads about food. And every magazine I pick up at the doctor's office has pictures and recipes of food...

The other day, I was at the grocery store (yes, buying food, for me anyway) and I saw microwave popcorn on the shelf. And I thought, when was the last time I had popcorn? hmmmm.... Probably pre-stroke, when Bob and I went to the movies. What was the last movie we saw at a theater? I can't even remember. Then, I bought myself some popcorn. Because it looked good.

Yesterday, I popped a bag into the microwave and then brought it into Bob's room where we were watching a movie. Now, usually I don't feel bad about eating in front of Bob. I did at first. It was awkward. But once he was passed for "pudding consistency", I'd bring him some pudding to eat while I enjoyed my dinner or snack or whatever. It was nice, because we were "sharing a meal" together, sort of. That was until about January. When he stopped wanting to eat anything at all... It was, as if, he appetite disappeared.

Back in January, I had talked to Dr. Doom, Bob's ear, nose, throat specialist, about this new development. Doom told me not to push it. He told me that anything, even pudding consistency or thickened liquids, was "high risk" for Bob. And if Bob didn't derive pleasure from it, well, don't risk it.

Doom went on to explain, "You really have to weigh the risk vs. the pleasure. For example, some people like to jump out of airplanes. They get a real thrill out of it. And jumping out of an airplane is very risky. It could kill you. But if they derive a great pleasure jumping out of an airplane, then it's worth the risk. Now someone else, take me for insistence, would be scared shitless to jump out of an airplane. So for me, it isn't worth the risk. So, don't force me to jump out of an airplane. And don't force Bob to eat if he doesn't want too. It could kill him."

Since then, I have not pushed Bob to eat or drink a thing.

Then yesterday, I sat beside Bob with my bag of popcorn and Bob looked over at me and said, "Hey! Carmel corn!" The way he said it, with such a childlike delight, nearly broke my heart.

I said, "No, just plain old popcorn."

He said, "Cockcorn!" Because he has trouble with those "p's".

Then he reached over into my bag. And I thought, wow, his appetite is back! Then I thought, oh no! Because popcorn certainly does not qualify for "pudding consistency" and he might aspirate popcorn and die! But I let him have one kernel. Just one small kernel. Which he broke in half. And put one half into his mouth.

And I held my breath.

After a minute or so, he took it out of his mouth, shook his head and said, sadly, "No good."

And I begin to wonder, how many times, in any given day, can my heart be broken?

Sunday, June 23, 2013

Preparing for Foot Surgery

On Thursday, we saw an orthopaedic foot/ankle surgeon. This doctor is located in the big "professional office building" next to the charity hospital where Bob gets his financial aid. Before seeing the doctor, an assistant came into the room and told us that Bob needed an x-ray. I figured they would be sending us to the hospital's imaging department next door and was surprised when the assistant had me wheel Bob down the corridor to a little room in their office suite.

There was only one x-ray technician there, pretty much running the whole show. She kept putting Bob's foot up on the x-ray plate and as soon as she went back (behind the curtain) to zap a picture, Bob's foot would move. Now this is Bob's "unaffected" foot and he used to be able to move it well, but since the dystonia in that foot and leg, he cannot seem to control it. Anyway, finally, she called me in and asked if I could hold his foot still so she could take some pictures of it.

To do this, she had me put on a lead "coat" or "tunic" or whatever-you-call-it. It wasn't just an apron. This thing was cut like a hospital gown (open in the back) with a belt and it covered me neck to knees. I tell you, it weighed about 50 tons. And it was bulky. I felt like an iron-clad walrus wearing that thing. And I couldn't get the belt to hook. I mean, I kept hooking the buckle together and it kept coming apart. So this lead walrus-coat was sliding off me every time I moved.

She had me crouching on the floor, in a very cramped space, trying to hold Bob's ankle to keep his foot still, all the while this stupid, heavier-than-hell lead coat was sliding off my shoulders and slipping toward the floor.  Add to that my getting-old-here knees, which do not always cooperate when I am crouching/squatting/trying to crab walk around Bob's wheelchair and especially, trying to get up from that position with 50 tons of lead holding me down.  But I did manage to hold Bob's foot still for the first picture.

The second picture, she wanted me to lean over Bob and sort of hold his ankle on the side. Now this position was near impossible with that darned lead coat, which kept falling off onto Bob. Finally, I thought, this is really stupid because Bob is sitting right there NOT wearing a lead coat, so why do I have to wear this stupid thing? So I took the darned thing off. The x-ray tech didn't say a word. And we got the other two pictures taken.

So, add that to my ever-growing job description: "assistant x-ray tech"! ha!

After the x-rays, we talked with the surgeon, who looked at Bob's foot and agreed with the new neurologist that his curled toes are caused by dystonia. So that makes three doctors on board with the dystonia diagnosis. And to think it took over a year and countless other doctors who looked at Bob's foot and agreed with the old neurologist that it was "neuropathy" and there was "nothing you can do" about it.  Sometimes, I swear, these doctors are all just yes-men, nodding their heads and agreeing with whatever another doctor has said.

Anyway, this surgeon said he can fix Bob's toes. He will make a couple of incisions on Bob's calf and cut the tendon which will release the muscle contracting the toes. Unfortunately, the big toe and the one next to it are "too far gone" so he will then cut the "knuckle" out of those toes and fuse the bone together with some kind of splint and a screw. Yikes.

But he did say this was a fairly simple surgery and it would be done as "outpatient" surgery and they usually do not have to put the patient to sleep, just numb the area. He said that Bob would lose his ability to "move" those toes, but right now he can't move them anyway, because they are all curled up. And the benefit would be that Bob would be able to stand on that foot again, so we could go back to rehab and back to the parallel bars and pretty much start all over. Not to mention, once it all heals up, the pain should go away. Which will be a huge relief for Bob.

Surgery is scheduled for July 8th. However, before then, the surgeon wants a "medical clearance for surgery" which means getting in with the primary care doc (which is next to nearly impossible) and having a bunch of blood tests, chest x-ray, urinalysis, etc, done. And of course, he wants to take Bob off the warfarin --- so I'll be messing around with lovenox shots again. And all that has to be scheduled and figured out and completed in the next two weeks. Plus we have Botox scheduled for July 2nd!

Looks like it's going to be a couple of busy weeks.

Saturday, June 22, 2013

June is National Aphasia Awareness Month

Well, who'd have thunk that? First I heard this was in an e-mail I received from one of the marketing team from Griswold Home Care asking me if I'd post information on my blog about their upcoming free Webinar: "Aphasia Solutions - Making Their Voices Heard."

The online workshop will be held next week, June 27th.  Click here for more information!

They also said for each blog post mentioning their workshop, they will donate $3.00 to The National Aphasia Foundation.

So, all righty. I've done my part!

Thursday, June 20, 2013

And It's Just That Easy...

Finally, finally, finally, this week the home health agency sent a nurse to set Bob up for at home feeding tube replacements. Yes, you read that right. At home!!! Which means no more rushing to the Emergency Ward, or to Outpatient Surgery or even the GI doctor's office. Not only that, he will get a new G-tube inserted every eight weeks beginning July 12! And if he ever has an emergency, i.e. his tube explodes or falls out or gets clogged beyond my ability to unclog it (all of which have happened in the past 2+ years), I can just call up the agency and they will send a nurse right out to help me!!!! Whoo hoo!!!!

Oh, and extra added bonus: IT'S ALL FREE!!! 

I tell you, this is how the system should work.

But you can't imagine the hoops I had to jump through to get this set up.

And how much I wish someone had told me of this service before now. Or even told me the fact that  (this doctor says) Bob's tube should be changed out every eight weeks to prevent infections and tube breakdowns. Because when I think of the grief Bob's tube has caused us in the past: each time it clogged and refused to unclog or split down the side or the y-port cap broke off or the whole thing just plum exploded and the one time, when it fell completely out. And when I think of all of those stressful ER runs, not to mention the expense: think $75.00 for an emergency transport ride and $250 co-pays for surgery.... geez-us.

Tomorrow, they are delivering a backup feeding tube, so I can have it on hand in case of emergency. I had to laugh when the infusion pharmacy called me to tell me this, because it was the same gal that, three weeks ago, I had asked if it was possible to get a "backup" tube for emergencies and she flat out told me no, it was not possible. And if I wanted one of those, to buy it myself. ha!

But, you wouldn't believe the brick walls I ran into setting this whole thing up. Starting with, first the GI doctor, then the GI doctor's nurse who had the order from the doctor but didn't know who to call or how to set it up. That nurse told me to figure it out and call her back. So countless calls later, talking with a lot of people who didn't have a clue, I finally connected with the right person at the right agency and after that, things rolled.

So it's all set up. You don't know a godsend this is going be.  And a big relief. But jeepers, why didn't anyone tell me about this service before? grrr...

Sunday, June 16, 2013

And Now I am a Criminal!

So we went to see the Pain Management doctor last week. Well, not the doctor--we never see the doctor--we pay $35.00 which is the co-pay for a doctor/specialist, but we always see the Physician's Assistant instead. I tell you, Pain Management is a racket.

Anyway, we are waiting for the PA to come in and it seems to be taking longer than usual for her to show up. Finally, she comes in and I can tell something is wrong. Because usually she is a pretty cheerful gal. That day, she has this look on her face which was anything but pleasant.

Then she says, "We have a problem with Robert's urine screen. And the doctor is VERY UPSET!"

OK, about then, I am just pretty shocked.

And she goes on, "There is no Fentanyl in his urine screen." Then she sort of glares at me....

And I'm thinking, huh? And then, I think, oh Ha ha! because I'm thinking she said "Phenergan" which is another drug Bob was taking at one time, but I took him off it. The reason I took him off of it is because I had read somewhere that Phenergan can cause/contribute to cervical dystonia. And I thought maybe being off that drug would help his neck. It didn't, but, by the same token, I didn't see any difference between Bob on Phenergan than Bob off Phenergan, so I figured why take a drug that's not doing anything?

So, I start to tell her this, I say, "That's because I took him off--" and she interrupts me.


And now, I am totally confused. Because Phenergan was prescribed for nausea and why do I need her permission? It's not that big of a deal, as far as drugs go.

And I can't think of what to say, but it occurs to me suddenly we may be talking about two different drugs, so I say, "We are talking about Phenergan?"

She says, "No! I am talking about FENTANYL. THERE IS NO FENTANYL IN HIS URINE! And, not only that, the screen shows TRAMADOL!  And we HAVE NOT prescribed TRAMADOL!"

Now the way she said TRAMADOL, she might as well had said CRACK COCAINE. Because that's the way she made it sound.

I say, "Tramadol was prescribed by his primary care doctor for lung pleurisy."

She says, "What about the Fentanyl? Why isn't there Fentanyl in his urine? What are you doing with his patches?"

I just stare stupidly at her, I don't even know what to say, because this is really weird. I mean, Bob has two Fentanyl patches and I change them out every 72 hours. I do this religiously. I even have "patch" marked on my calendar for the days I need to change them. Because without his Fentanyl patches, Bob would be screaming in pain. And this woman is treating me as if she thinks I am some kind of freaking drug dealer, stealing Bob's patches and selling them on the street! GA!

I finally mumble something about putting them on him every 72 hours. Then I say, "You can check him! He has them on! I'll show them to you!" Because now I am really scared that Bob is not going to get his monthly prescriptions for pain. So I pull Bob's shirt up and show her the pain patches.

Then she gives me the third degree. Asking how/when/where I put them on. Asking if any had fallen off or not stuck properly. Asking is I accidently missed a dose. And I tell you, I felt like a criminal by the time we left that office. But we got his prescriptions. We were warned there would be another drug screening in the near future.

As I rolled Bob out of that office, he looked at me and said, "Weird."

It was weird. I have no clue why the stuff didn't show up in the drug screen. Of course, the first thing I did when we got home was google "Fentanyl drug screen" and the first things I found were some forums with junkies asking if Fentanyl would show up on their parole drug screen. To which, some people answered that Fentanyl requires a special type of drug screen test. Then I found some other forums for pain management patients and, you know, a couple of people wrote that the same darn thing happened to them. i.e. Fentanyl did not show up on the drug screenings....

So then I called the company which makes the drug and asked if they knew why it wouldn't show up on a drug screen or if there was a special drug screen for it. They couldn't answer my question. They had no clue.

Then I thought long and hard about it, and realized that that drug screen was the first one we had done using urine from Bob's condom cath bag and I wonder if that made a difference. That, and the fact, that the PA had told me to "bring some urine" with us, i.e. not empty the cath bag before we left the house. And I did that. In fact, I brought in urine that was over a day old and I had stored it in the fridge over night. And I wonder if that made a difference....

So I am armed with questions for the next Pain Management appointment. Such as, did the lab run the right test? Did the condom/cath bag i.e. latex/silicone skew the results? And does Fentanyl have a shelf life?

Thursday, June 13, 2013

An E-Mail From A Friend

A couple days ago, I received an e-mail from my dear friend and fellow writer in Chicago, Jennifer Buchberger. Jenn and I go way back. Many moons ago --goodness, could it really be over 20 years ago?-- and in what seems like another life, we met at a writer's workshop and have kept in contact ever since. Jenn's e-mail was in response to my June 2nd blog post "Acceptance & Other Ramblings" about the stages of grief and especially, the last stage, "acceptance".

I received her message late in the evening and 3/4 the way through reading it, I had so many tears in my eyes, I couldn't finish. The next morning, I re-read her e-mail and still got tears in my eyes. Right now, I just finished reading it again, and tears are streaming down my cheeks. (Damn you, Jenn!) Her e-mail has a beautiful message and is beautifully written, so I asked her for permission to publish it here. And she gave it to me. Here it is:

SUBJECT: An Evening with Grace

Detours from being alive became the reality of being alive.  Maybe it's not acceptance, maybe it's just some ease from the weight of sorrow.  I share a few of my experiences along this life quest.     

 Many decades ago, in the month of June, my great-grandfather passed away.  I had turned ten the day before he died.  I do not remember a birthday cake, there may have been one.  I do not remember presents, I'm sure I got one.  
     I do remember how the light looked different in our house, the night felt thicker.  There was much whispering.  My little sister was afraid. I was wondering.  What was going on?  
     The ritual of wake came with the weekend.  Great Aunt Jo, perpetually clutching a white hankie, wandered the room red eyed.  Great grandfather lived with her family for years, at least it seemed so to me.  
     My sister and I stood off to the side, at the back.  We may have been daring each other to go up to the casket.  My grandmother came over to us.  She linked her right arm in my left.  I felt safe.  She said we could go up together.   My sister may have been behind us.  As we came closer to the front (or is it the back of the room?), my muscles changed their mind, tensing.  We were almost there.  I felt my grandmother tug me along.  Then we were standing at the open lid and great grandpa's quiet face.  I expected him to pop up any moment if I stared too long, but I had a hard time not staring.  I'd never seen a dead person, never talked about death either.  Squished enough of those little "blood ants" in the summertime of my childhood, but that wasn't really death to me.  What did I know?  Absolutely nothing.
     Suddenly, I felt my arm extend.  My petite grandmother was reaching our hands toward the corpse!  She was going to make me touch a dead person!  I felt short of breath as I tugged back hard.  "It's just my father," she may have said.  To this ten year old, he might have well been a zombie not yet reanimated.  
     The later 1970's brought out a film about life after death.  Stories of people that went through near death experiences.  Hope that this is not the end.  

     Jump ahead fourteen years.  Along the way, this girl experiences several more funerals.  Wisconsin farm funerals.  I still hung back in the church, choking back tears, cursing Catholic services and Ave Maria choirs.  Trying to distance myself all.  the.  time.  I began to talk and talk about death after the services, weeks after the services.  I tried to make sense of this odd ritual of suffering, of dying.  I kept talking about it until my husband asks "Isn't it enough", although kindly.  
     No, it's not enough.  
     So the quest begins.  Understanding death.  How to die.  How to help someone die (in a non-Kevorkian way).  And I read, read, read, and continue to ask questions.
     Come to present day.  I reflect back over the last 12 years - impacted by infamous 9-11.  To 2005, when my mother-in-law slowly dies  - I remember my mother-in-law laying on her hospital bed -"so much pain.  I hope you never experience such pain." (It still haunts me.)  She died in her own bedroom in the wee hours, her caregiver and my sister-in-law asleep close by.  
     That night was the first night my soul sobbed uncontrollably.  Our relationship wasn't all that great.  We were on a learning curve.  Yet I sobbed.  It felt....cleansing.  Then it stopped.  I cried at the end of the wake.  I may have cried at the church.  Gerry and Erik were pall bearers by choice.  They were moved to do it.  They felt it was a last caring thing they could do for her physical body.  Ritual.  
     More questions.  A house to clean out.  An estate to settle.  Gerry's mother had given the family a gift of a well planned exit.  Many items in her house were marked with notes taped to the back, of who she wished it to go to.  In my eyes, she faced death strongly and organized.  
     A year later, my buddy had a massive heart attack behind the wheel of his red Ford F-150 on the way home from a morning of hunting.  That morning, he'd asked his ex-wife (whom he lived with) "When do ya think Jennifer's going to bring the Christmas cookies over?"  I always make cookies and liked to share with Mike.  He was late coming home that day, it was way after noon.  So I bagged and hooked the full cookie tin on the door knob for his arrival.  His ex-wife walked over around 3 pm.  I expected her to say he was in the hospital.  "Mike died."  Punch.  "Oh."  I really have no idea what I said.   And hour later, I felt I couldn't breathe.  I couldn't breathe.  I couldn't sleep.  I couldn't breathe.  I'd come face to face with the death of someone very close to my heart.  And boy did it suck my breath non-stop that day.  
     Since his death was December 28th, his ex-wife and daughter wanted to get him in the ground (not really) before the end of the year.  Superstition?  Maybe.  Didn't want the new year to start on such a grievous note.  
     January ushered in emotional, physical, spiritual rawness.  I searched for connectedness and relief through specific books.  Pema Chodran's When Things Fall Apart, Dr. Kubler-Ross On Grief and Grieving, David Kessler's The Needs of the Dying, to name only a few - to help make sense of what I perceived senseless.  By March, my crying fits had lessened, and I began to look forward to a day when I could think of my friend and NOT cry.  
2007 rolls around.  
    It was sudden, unexpected, a 6th grade boy - during gym class.  Everyone was doing the most to save him.  I rubbed his chilly right arm, spoke his name.  His eyes rolled, his breath gurgled, rattled, and I knew then.  I saw it, felt it.  The community service police officer arrived with the AED kit.  He seemed confused as to which pads to use.  I grabbed the child pads and placed them on the boy.  The school nurse flipped the switch on the machine, no response.   The ambulance came.  He was whisked away.  Later, before the end of school that day, I'd told the gym teachers he had died - assuming they found out first, after all they were the teachers, I was an aide.  They hadn't.  I'd never delivered news like this before.  They looked numbed.  I wished I knew they didn't so I could have either differed them to the nurse or softened the delivery.  

The following day,  it was learned the boy had an aortic dissection.  No one could have saved his physical life.  Even if he was in the hospital when it happened, we were told.  
That time, when I knew he was gone - it was as if time suspended, I could feel the flurried activity around the scene.  The small sphere around the boy and I was quiet, gentle.  Looking at the boy, holding his arm as he lay on the soft grass, I heard "It's okay.  I am okay."  Tension in my body eased.  Acceptance.   It was a beautiful day in May.

It's been six years.  That moment may be a memory, yet I can still feel the sensation of suspended time.  It was incredible.  That's when I learned, yes, it is a gift to be with someone when they die.  

It took three years before my crying fits finally dissipated.  I can now speak of Mike without falling apart.  I've had dreams of him coming to me, helping me ease away from the sadness.  I'd known him for two years, yet the human connect was intense.  My little friend from the neighborhood.  It was if we both were ten years old and pal-ing around on lazy summer days.  He shared stories of growing up in the country that was now a bustling suburb we live in.  
A co-worker of mine once said, "Loss is loss."  Be it a beloved pet, a sister, a parent, a child, or soul-mate.  

 So, then, what has the subject line to do with this loooong email?  
Grace worked in hospice for 30 years.  Thirty frickin' years!  Takes a special person, I think.  Last week, she held a workshop on "Crossing Over" (not to be confused with John Edwards).  Life after death, and near death experiences, of which she experienced two.   
Some of what I took from this workshop:
     *  Ask the Universe for help, be specific (you already know this).  CONTINUE ASKING!
     *  Practice SELF LOVE (it is NOT selfish), care for yourself
     *  A participant said "I can not lose my mother"  to which Grace asked, " What can't you lose about her? What can't you live without?  You MUST give this to yourself."
     *  They (the dying) do not want you to suffer.  Love them enough to let them go.  Let them know you will be okay.
     *  We cry because we are sad for ourselves.  What we will miss.  Focus on the gift they have given us.  

     Yeh, simple to say - monumentally difficult to put to practice, no?  It is work in progress.
     Another workshop attendee said, "My mother has Alzheimer's and it's hard to think of her not 'being there'."  Eileen recommended having a ritual.  Something like a funeral, but for the person her mother once was.  This will help facilitate the ability to be with her mother in the now.  Meeting her mother where she currently is instead of holding on to what once was.  
     What once was is changed forever.  
     For you and Bob, it is changed forever.  Who knows how the future will unfold.  Perhaps the releasing of the old Bob will propel you in a less painful direction?  
     From your blog on June 2nd :


 his headphones, which are still on "his nightstand" by "his side" of "our" bed LET THEM STAY FOR NOW.  IT IS STILL HIS SIDE OF THE BED AND HIS NIGHTSTAND.

And I thought, what am I searching for?  IT'S ALL RIGHT. (NO IT'S NOT).  YES, IT ACTUALLY IS.  THE PROCESS LEADS TO ........ 


And we came home, Boomer and I. I had left the radio on for Bob and when I opened the door, Elton John was singing that song that goes: butterflies are free to fly, fly away...

and for some reason that nearly brought me to tears.  I fed the dog. And then I sat down next to Bob in his hospital bed as I always do for our morning chat.

And Bob said: "Sad?"

I said, "Oh no, just thinking. Thinking about what to write about."  

All my love
in kindness and compassion
in strength and fortitude
in wisdom and peace

Tuesday, June 11, 2013

Lazy Days

Bob & Ripley chilling out on a lazy day..
I hate to say that I am probably exhibiting all 10 (or 12? or 15?) signs/symptoms of "caregiver burnout".

I just don't have the energy for much lately.

Except the basics: you know, feeding tube, medications, bathe, dress, empty pee buckets and change catheters and diapers and bedpans. And, of course, laundry, there is always laundry.

And since Bob has not been wanting to do any therapy exercises, I've been sort of in a lazy mood... and not doing much besides those basic needs. Not even blogging as much as I used to. Which is probably a bad sign...

And don't you just love those websites on "caregiver burnout" which tell you (the burnt out caregiver) to "Go get a massage!" to which I say, "HA HA HA!" or "Take the day off!" (Another Ha ha ha!) or "Ask family/friends for help!" (With the exception of Chris, Ha ha ha! again. As family is 1400 miles away) and, of course, "Hire help!" HA HA HA!!!! All I can say is, that's easy for you to say.... I suppose caregiving is easier when one is rich.

But I must say that I am glad to see Ripley back on the bed with Bob. Ripley used to be Bob's constant companion until he got peed on one too many times. Thanks to the condom catheter, Ripley finds the hospital bed is safe again. That is, as long as those darn catheters don't explode....

This week, we have three different doctors appointments scheduled, so I will have to get out of the "lazy day mode" for a while. But still today, it's bed bath, wash his hair, meds, then a movie until more meds, fill up/start up feeding tube pump, change for bed, empty catheter, connect night catheter, etc...

And that's a "lazy day" and I am exhausted just thinking about it.

Saturday, June 8, 2013


On Thursday, Tropical Storm Andrea blew through our area. And of course, that was the day Bob was scheduled for a doctor's appointment. And that doctor was the foot surgeon that has taken us over a month to get into see. And we had planned to walk there (or to be more exact, I had planned to push his wheelchair there) being it's only two blocks away. The appointment was set for 12:30.

All morning, I was watching the weather reports. It had poured around 4:00 a.m. and since we'd had scattered showers. The weather reports had the rain chance at 100%. Though the stuff seemed to be coming in bands and I figured, if we were lucky, we could slip over there during one of the drier spells.

So, I got Bob bathed, dressed, hooked to his condom cath leg bag, and shaved. I got out our rain ponchos. And packed our bags, so to speak, getting all the stuff I need for him into my purse and his backpack.

Then at about 11:45 a.m., there was a sudden burst of wind. Then it was raining sideways. Beating against the house and windows so hard you couldn't see outside. I heard a loud crash on the front porch. When I went to the front door, I saw that our bamboo roll-up shade had unrolled was flying free like a huge flag. The thing was whipping back and forth and banging into the porch swing which was smashing into the adirondack chair.

So I dashed outside and tried to roll up the bamboo shade, but found the cords that roll it up were gone, broken by the wind, and that wind was blowing, I mean really blowing, I would later learn, 35-40 miles per hour.  There I was, fighting with that shade in the wind, trying to secure it somehow, but the thing kept whipping out of my hands, then smacking me in the face, nearly knocking me over, and I finally gave up.

And then the shade smashed into my four tiered planter which crashed to the floor, dumping all the potted plants and knocking into another table and wiping out yet another potted plant. So I ran back into the house and grabbed the step stool. Because I had to pull that shade off its hooks before it wrecked everything on the porch. To get to the shade, I had to get behind the madly swinging porch swing.

Then there I was, teetering on a step stool, in 35 mile per hour winds and rain, scared shitless, porch swing banging into my back and shade flying at my face and me, trying to reach up and unhook that darn shade. But somehow I did it.

By then it was noon, and I was soaked, and I thought, no way are we going to make that doctor's appointment in this weather. So I called and rescheduled the appointment. And I swear, almost immediately after I hung up the phone, the rain stopped.

And fifteen minutes later, the wind died down.

And it was dry for the rest of the afternoon.

Thus begins another Hurricane Season...

We see the foot surgeon in two weeks, weather permitting.

Sunday, June 2, 2013

Acceptance & Other Ramblings

Early, this morning, I was walking the dog and we went to a nearby lake, which really isn't so much a lake but a pond. I mean, it's a little pond, at that. Bob and I used to laugh about how in the South they call anything bigger than a mud puddle a "lake" whereas up North it would simply be a pond.

Anyway, Boomer and I were walking to the lake and I was thinking about a lot of stuff. Rambling thoughts, mostly. One of which was what should I blog about? And I couldn't think of a thing to write about. Because, truth be told, there's nothing very exciting going on, no breakthroughs in recovery, no funny stories here and I am down in the dumps and Bob has not been feeling well. So Boomer and I are walking in the early morning humid air and I see this car parked on the street. And it's a vintage 1970's Monte Carlo, maroon with a white vinyl top, and immediately, in my mind, springs a vision of Margie, this woman I used to know, who had that exact car, the exact color, way back in 1978 or 1977 or about then. I remember the first time I saw her with that car because she was wearing a pair of maroon colored pants, a black top and a pure white rabbit fur jacket. She got out of that car and said to me, "I just bought this outfit and I liked it so much that I had to buy a car to match!"

Strange, the things we remember... Strange, the things that pop into one's mind.

I've been thinking a lot of about acceptance lately. That's the "final stage" in those "stages of grief". And I tell you, I've been through all those stages: the denial, the bargaining, the anger and depression. All of them, since the stroke, except acceptance. I was, for a long time, stuck in that denial stage, truly believing that Bob would get better, that he would be "Stronger After Stroke" as Peter Levine's book tells us. That he would walk again, eat again, read and write and speak again. And I had such high hopes even though it does seem that Bob has long ago accepted his fate. I tell you, I have had trouble with that acceptance thing.

The other day, I got an e-mail from The National Stroke Association titled ACT FAST: 9 minutes or less, the e-mail started with "When a stroke hits, every second counts--think Fast. Two million brain cells can die every minute during a stroke--Act Fast!" or something like that and I tell you, I flipped my lid and e-mailed them back something about instead of e-mailing me this crap, they should be e-mailing those ICU nurses in, by the way, Your Stroke Center Certified Hospital! who nearly killed my husband. And I probably shouldn't have done that, but it felt good....

I have been living for over two and half years now sort of like a modern day Miss Haversham. Like everything just stopped one day in October 2010 and I am still waiting for it to pick up where it left off. I mean, Bob's sunglasses are still on the dash of The Green Machine, where he left them, and his hairbrush and hand sanitizer are still in the cup holder along with some weird little gizmos that he was using to work on the car. All of that, still there, covered in dust and cobwebs, as if I expect him to get in that car and drive away. But I can't bear to move them, to put them away. Because to do so is to give up hope.

And then there's his headphones, which are still on "his nightstand" by "his side" of "our" bed even though he hasn't been in our bed for over two years. But he used to wear those headphones when he couldn't sleep and wanted to listen to late night talk radio and not disturb me. Those headphones, too, are covered in dust and cobwebs and his shoes are still parked under that nightstand, where he left them two years and 7 months ago,  I still cannot bear to touch them at all...


It's such a harsh word.

This morning, we were at the lake, Boomer and I. We were alone except for a Great Blue Heron standing statue-like at the edge of the water. I sat down on a park bench, just looking out at the pond and thinking about what to blog about. And a car pulled up and this guy got out with one of those fancy metal detector things. He put on some headphones and started scanning the ground and I thought, what on earth is he searching for?

And I thought, what am I searching for? Then, I thought about Bob's headphones on the nightstand. And his favorite soup that's still in the cupboard. And the lamp he started to restore and it's still covered with masking tape...

And we came home, Boomer and I. I had left the radio on for Bob and when I opened the door, Elton John was singing that song that goes: butterflies are free to fly, fly away... and for some reason that nearly brought me to tears.  I fed the dog. And then I sat down next to Bob in his hospital bed as I always do for our morning chat.

And Bob said: "Sad?"

I said, "Oh no, just thinking. Thinking about what to write about."

He said, "I want.... to tell.... you... a story."


"A long, long time ago..... One morning...... It happened...."

And he didn't say any more, so I said, "What happened, one morning, a long, long time ago?"

He said, "Um... I don't know."

And I laughed and said, "Well, it's a good thing you're not the writer in this family."

"Yeah," he said. Then he laughed, too.