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The New Pad in the Office

A while back when the nephews were visiting, I put one of their sleeping pads in the office so that the aging Willson could spend time with me comfortably.  When the handsome Setters left, Harry missed the availability of the pad, having favored sleeping on it rather than his usual spot on the loveseat which had been usurped by Topper during his cousins' stay.

Not only was the pad gone but while visiting, Topper, the younger dog spent some joyful time shaking apart the 2nd sleeping pad in the bedroom leaving a mass of pale green stuffing at that end of the room and Harry without sleeping options.

Thanks to my sister, we were able to find not one but two zippered replacement pads at a reasonable price and used the filling from the destroyed pad to plump out the new pads. That really made Harry happy.  Not only did he had another choice in the bedroom but his achy joints could settle in easily while in the office.

But Harry isn't the only one who likes the new office bed, Blakey, the black cat with storybook markings, has claimed it as his as well.  He can often be found curled up in the center, sound asleep.  Waiting to disrupt that sleep is his brother, Mongo. When tired of watching the birds from his perch on the printer by the window, Mongo will slip down to the fleecy pet bed and settle next to Blakey.  Within minutes the games begin.

Sweetly enough there is the grooming, the gentle cleaning which is soon followed by a Mongo pounce, forelegs around his brother ready to go a few rounds. Next is the biting in turn followed by the yelping from Blakey once again caught trusting too well.  At last Blakey storms away while Mongo sits on the pad, innocently licking his paws, the sole possessor of the new pad.

At least once a day Harry comes into the room to find Blakey in the middle of the bed. He will look at me making tiny noises to tell me that all is not well with him.  No problem: pick up the sleeping cat, dog immediately circles to lie down and then put the now-awake cat  back down on an unused section where those two can peacefully share.

Right now, the brothers, each weighing in at 15 pounds or more, sleep side by side, the broken trust from this morning forgotten.


Yesterday my sister and I had what we both hope is a once-in-a-lifetime experience.  We would have preferred never but we weren't given that option.

It began simply enough near the end of a day trip to pick up some parts for my chain-link fence which had been damaged in a recent storm.  We had planned to stop for a late lunch once the parts and pieces had been loaded into the car.  Usually I let Jan select but I wanted to stop at a restaurant where my husband and I used to eat a wonderful pressure fried chicken for both the taste and the pleasant memories.

So we drove around the Burton square, passing the maple sugar cabin, and parked in front of the restaurant now renamed because of a change in management.  The menu was the same, however.

I tried to order the chicken but after checking, the waitress informed me that they were out of it.  Since the waffle and pancake section of the menu had a large heading indicating that nothing but pure Geauga County maple syrup was served here, I ordered belgian waffles figuring I could share them with my sister.  She ordered a salad.

The meals arrived but when I poured the syrup it seemed unreasonably thick, more like the corn syrup maple substitute that is now called pancake syrup and is bland and tasteless.  I tasted it and sure enough, no flavor, all corn syrup. When we questioned the waitress, she informed us that they had been out of maple syrup for some time and that when people found this out, sometimes they became angry and left. I told her we'd stay but not having maple syrup was odd because I could see the Burton Log Cabin Sugar Camp just by turning my head...and it was open.

Switching to grape jelly for flavor worked for me but I couldn't offer Jan a waffle triangle because they already had some corn syrup on them and she is allergic to corn products.

We had eaten only a few bites when suddenly my sister leapt from her seat yelling, "Why are you exterminating when I'm eating?  I'm allergic to that stuff!"

And sure enough, I turned in mid bite to see a fellow with a largish spray canister spraying the floor not 6 feet from where we were eating. The mist swirled around us - actually it was a light mist and a stronger smell.  There was the exterminator spraying for bugs while people dined at the counter and the tables.

Jan raced out the front door with me in her wake, the taste of the insecticide in my mouth.

So that's what happened but what I can't figure out is why.  Why is the new management not changing the menu or at least whiting out the incorrect information or putting a post-it over the bait and switch?  Why did anyone feel that it was acceptable to expose the customers, waitstaff and cooks to insecticide without even asking us if we wanted a side of nerve gas derivative. Even bars let you name your poison.

If you know anything about extermination - and the fellow with the tank should have or he shouldn't have been spraying especially in a commercial establishment - you know that you must clear anyone with allergies before spraying.  All foodstuff must be removed of covered.  The premises must be vacated from 2-4 hours until the product is dry to the touch. Certain surfaces must be covered first.  And NEVER apply insecticides while food is being prepared, served, eaten or otherwise exposed or open. (The open salad bar in the next room is a good example of the latter.)

I did try to notify the county Health Department online but their form program wasn't working properly, perhaps is never has, and it insisted that I had entered no text.  I'll give them a call on Monday.

As a side-bar I would mention that pesticide/insecticide/herbicide exposure is considered an environmental trigger for neurodegenerative diseases such as Parkinson's disease.  Usually it is repeated exposure but I wonder how many repeated exposures are in a few mouthfuls of these toxins?

A Weekend of Reflection

Not very long ago I read an article about grief and mourning. What it said essentially is that it is okay to grieve for however long and in whatever form it takes, .

I prefer that my grief be slightly private. I hate funerals because you either have to grieve in front of people or you have to put on a brave face. I'm not there and wasn't for either option.  The process of making peace with a loss, of forgiving him for leaving, forgiving myself for obviously not doing enough despite knowing that there was little that could be done for his form of dementia, is rocky.

I learned more and as a result knew less. I focused on my anger and then had not only regrets but more anger because I knew there were things I should have done, ways in which I should have been different. I should have been a better person to him; he should have cherished me as I cherished him.

When we first married we were so young that we didn't really know what we were doing, just playing it by ear on my part and playing it by some mysterious book on his. It was confusing because marriage changed him and ay first it didn't change me...until being married to him did cause me to change to a person I didn't know.  And that both hurt and eventually caused some very misdirected anger. I know that was a turning point which I would like to take back.

So I forget that for the last four years of his illness I was there for him. I forget because I'm so into the negative that I forget the tenderness. Forget about trying to engage him, trying to share, trying to understand his demons and instead remember only the unpleasant details.

But then it gets worse. As I slowly reintroduce myself to the music I've always loved, I remember the good times, the times when we were in sync, the passionate times. And then I know something precious is gone.  Someone remarkable has left the building of my life. 

It was so much easier to let loose the anger than it is to live without the love lost.

Too Blue for the Blues

Mongo lies in my arms now, flexing his paw occasionally to remind me that he is a cat, not just a lap warmer.  His faint purr a simple musical background. For now, it is the only music I can bear.

My adult life has been lived with so many aural cues guiding me. The sound of the pet drinking fountain when it runs low.  A child with a stuffy nose.  The sound of water running through the pipes when the house is sleeping - what was left on or is leaking?  The change of the sizzle in the frying pan - oops. The road wind though the slightly open car window - even in the winter.  Rain on the windows telling me to bring in the dogs, Harry doesn't like to be wet and Rita is afraid of storms. The breathing of my loved ones - has it changed?  Is attention required? The sound of the silent house late at night.

Music has always been my high.  When I was still a teen it was the layers of sound in one particular oratorio which led me to join a baroque music club in order to obtain a copy which I could not find elsewhere.  Later it was jazz and of course the blues which always brought me out of my own blues. In my early 20s it was a reintroduction to the blues which evoked a forgotten and much-needed smile and led me back to the sounds I needed to feel..

In the last stage of Stephen's illness, I had music playing for him instead of the news which so distressed him. Since he wouldn't tell me what he wanted to hear and did not seem to enjoy his favorite types, I set the station to music which felt right, which calmed him but kept him in contact. There were the sounds of life whenever I went into or passed near his room. When the home health aide came we switched to the blues because that made her smile too as she bathed and exercised him while enduring his crankiness. 

Now that he is gone, I have not been able to listen to music; he is not there for sharing.  The sounds of his breathing slowed and stopped and he left.

Mongo purrs it will be okay as he leans his head against my arm but his tail occasionally swishes in a way that says, I know you aren't fully here; I want you back.  To our left, Harry snores through his nap - I spray the eucalyptus to ease his breathing.  The sound of the spray sends Mongo from my lap to join his brother who has resumed his regular naps on Steve's bed.

When I can let the music back into my life, I'll know that we will hit the road. 

In Retrospect...

In college I used to love exercising in our myriad of required phys ed classes. I could jog around the gym for hours if required. At night  - I know that isn't the best time but it worked for me - I would do situps, whatever, every night.  Once married, the routine continued, supplemented by additional exercise which gradually cut into workout time.  When I was pregnant with our firstborn, lying on the floor meant the dog and cat would be right there, often on top of me, sharing that time. Cat hair in mouth, exercise became less alluring. And so by the time our daughter had arrived, my exercise regimen was a thing of the past.

Years later I became one of those people who buys exercise equipment with such exciting visions, such good intentions...and ultimately the hope that just having the ab roller or whatever in the house will earn exercise credits for me.  Just as I used to buy cookbooks with great photos.

The problem is that this thought process carries itself over into relationships too.

We used to debate/argue ad nauseum about the problems in our relationship. We would write long notes to each other - notes we should have written and burned.  Perhaps we would try to be nicer, more considerate. Things might even seem better for awhile.  We would make an effort but really never got the the true heart and soul of our demons.  We just weren't able to take the issues past the ab roller in the closet.

In retrospect I can see how I might have done things differently for us. If I had, perhaps our life together might have been quite different, perhaps we would have been happier.  I can see how I should have done things differently.  I just don't know if I could have.

Time Is a Commodity

The day unfolded slowly.
The ritual taking of the PD medication;
although no interest in eating or drinking.
Not typical but not unusual - more sleep needed.
Time passed, still no interest, just quiet almost peaceful sleep.
He seemed comfortable in that rest.
I thought that sleep was the answer.

I checked regularly, offered liquids when he seemed aware.
Afternoon when just before his sponge bath, his quiet breathing became labored.
Morphine eased his breathing but his color changed, faded before my eyes.
I held him in my arms as he would stop and restart breathing; we could hardly find a pulse.
And then he was really gone.
Time had stopped.

I'm trying to find all those moments he would have remembered so much better. 
Not the lows but the everyday, the shining minutes, hours and days.

I've been mourning his loss for months and months, all the while trying to find the ways to give him back the time he feared losing.  His drummer had an irregular beat.  Some days we felt successful but those days, that time, didn't last..Steve in black shirt

Nothing lasts.
Time is a commodity which we try to buy, trade, borrow but always lose.

So we catch the memories and hold them close to make time repeat itself.
The stories may alter with time but they will be there when we can open that window.
No bargaining - just putting the recollections out there to float in time forever.

My Parents Would Boycott North Carolina

Many years ago my parents travelled throughout the country with their smallish dog, an intelligent, well-behaved beast who never have made any kind of mess in a motel room.  Mop had the best of veterinary care and was religiously checked for fleas and ticks by my mother.  But his hygiene was of no concern to North Carolina and dogs were not permitted in NC motels.  This law simply meant that my parents would drive through North Carolina and not stop.  They never spent a dime in that state because they were offended that their baby was banned.

Were they still travelling, they could probably add another reason to boycott North Carolina should the marriage law pass.  Although their reasons would differ, they would not condone contributing to the economy of a state that feels they need a law to provide a definition; to use the state to provide another way to treat others with legalized bigotry; to deprive children of civil unions medical care under the guise of states rights, and to couch religion in state law.

At this point the vote is not in but they already oppose gay marriage so the projection is that this new restatement-rights depriving bill will pass; that North Carolina will step back not one but two centuries.  What a waste of time, money, human energy. This bill wasn't necessary for people to make their feelings known.  It is a political acting out in a time when we need to be joining hands. 


Just What We Need

This morning's email disclosed a Costco flyer advertising home delivery for a shiney industrial-looking stainless steel trash can with a sensor which automatically opens the can when you are only inches away.

Have you ever shared a house with dogs or cats who like to rummage through the garbage looking for tasty morsels?

When we were first married, I had my childhood cat.  A dignified lady who would never raid the trash.  But we also had a puppy and a kitten who would work together into the night to get into the garbage container under the sink. It was adorable to watch Grover and Tira working in concert to find dessert and leave the rest all about the kitchen floor but it was awful to clean.

Over the years we've had many trash scavengers and no matter what type of lid, someone has always managed to beat the system.  It may have taken considerable pushing, prodding and pawing, but in the morning, there was the trash all over the floor.  The pets who had eaten the taboo (chicken bones, onion skins, that forgotten stuff from the depths of the refrigerator) often regurgitated it as well.

Since my return I have put a couple of shallow but heavy boxes on top of the carfully bagged trash in the can - we don't produce that much - and not wanting to risk toppling the boxes, the dogs have left the trash alone.

And now here is Costco offering - at a very reasonable price - the perfect solution for them. A heavy lidded can which requires no opposable thumbs, no teeth, no snout - just your presence 4" away to Open Sesame.
I wish I could say that our extended holiday trip went well. I would like to report that the car ran flawlessly and the front end problems on which we had spent many dollars had been totally identified and resolved. That leaving on time brought us to a perfect motel room while there was still daylight.  And that Steve was on his best behavior, happy to spend precious time with his family members. Boy do I wish I could say that.

It only took 45 minutes to get Steve into his clothes and out to the loaded car despite his protestations that he could not walk down the steps. So we were off to a fair start only 10 minutes off schedule.

Somewhere across the innerbelt bridge I hit a pavement change and the front end shook like a jackhammer for 30-45 seconds. I should have placed the call to the mechanics at that point but I didn't know if we had a pattern yet.  Well past the airport we hit another odd paving something and more violent vibrations lasting even longer. Pulled off, called the guys at the shop, got back on the freeway heading the opposite direction to the shop where they looked carefully, found the problem which must be fixed another day. "Safe to drive?" I asked. "Drive carefully, it won't fall apart."

Although Steve wanted to return to our house, we were back on the road once again. Slowed down when I came to the first pavement situation and the vibrations only lasted a few seconds.  Forgot exactly where the second spot was and spent a minute slowing the car to stop the shimmy. Surprisingly that was the last of the car issues as I learned that I must adjust my driving to suit the car and that our destination has much better paving than Cleveland. Kind of made me wonder why this would be and figured it is a political mix of who's doing who.

After stopping for gas and a quick dog walk, Steve began telling me that I must be lost, that we were driving in circles, that he couldn't see the motel which was about 90 miles away. We should just turn around and go home.

Central Ohio farm country is amazing in its simple beauty  It invites you to drive through and take what you will in your mind's eye. And then it dumps you back to an east-west highway. "There's a motel, let's go there and then we can go home."  "Not yet, the dogs want to see Cosmo and you need dinner."

The dogs and I went without him to his sister's house that night. The dogs had a chance to run free and I picked up the pre-shipped but unwrapped presents to take to the motel while dropping off food for better refrigeration.

The next day he tried let's make a deal. His plan was that I would go to his sister's house where many of her husband's relatives would be gathering while he would stay at the motel...and then we could go home. "Sorry, no. You said you wanted to see your family for what you feel will be the last time."  I knew he was in emotional pain but I also knew he needed to see them.

When we pulled in the drive at noon, he announced that he could not walk - of course what he meant was that he would not walk and for the rest of our Saturday and Sunday visits he had to be pulled up from the chair or couch and supported completely. He would make his legs fo limp at first although his upper torso becomes rigid. By placing one hand mid-back and holding his arm to his side so that he would not grab something to stop the forward progress to and from the bathroom or the table, I could move him forward as he took short hurried steps.

His PD postural instability causes him to hunch forward but lean backwards - it is an odd combination and creates many falls for people with Parkinson's. Sometimes I had to place my hands under his arm pits and just lift. Often in that situation his legs will precede him as he tries to resist forward movement that way. He's still easier to propel than carrying a slippery 40 lb bag of dog food but not by much. 

Anxiety attacks are not pretty - prolonged attacks such as this can be stressful and ugly. I should have been much nicer but I was not. I just couldn't shock him out of this one. Tom and Sheila were very solicitous which he didn't acknowledge at the time but it meant a lot to him.

When we left that evening, he was very grateful, he said, "for the doctor at the clinic who was very nice" while I'd been mean (he was right on that account)  Of course the doctor was his sister's husband...who is not a doctor although she is a nurse. He also said that now that we'd been there we should just head back home. "It's late and you don't like driving in the dark.  Besides all of our stuff and your medications are at the motel. We'll go there."  

The next morning we had a 9:30am call for Xmas breakfast.. Before I took the dogs out for a walk I suggested that he stay away from the presents in boxes and bags next to the door as he opined that he should open them. So while I walked the dogs he walked around the motel room and managed to fall onto the stack of presents I had wrapped until 1:30 in the morning. The dogs were fed and some presents re-wrapped while he made more bargaining attempts to no avail. He was steered to the car and into his seat.  When we arrived he could, of course, no longer walk.

Neither one of us is comfortable in large groups of people and we've always handled social situaions differently. I avoided them when I could and just became an observant wallflower if I couldn't, while he told me years ago that his trick was to find someone who looked more miserable than he felt and to talk to them.  I guess he felt lost in his coping methods because his assumption was that no one would be more miserable than he.

He spent some time talking to his middle sister who had put together some albums of old family photos from the ones she had found when the sorted through their late mother's things. There was considerable guessing as few photos were labeled.  She had thoughtfully set aside pictures from his childhood as well as news clippings. We will go through these again when I scan everything for our children.

I should mention that his inability to support himself was not an attempt at pity - he really prefers a low profile. Not walking was the physical manifestation of the inner turmoil and fear.

I have no regrets about making the trip, I actually had no time for my own anxieties and was able to talk to Tom's relatives and finally felt much closer to my sisters-in-law. I'd like to make the trip next year and in the years to come. .

At the motel that night I realized that if I had him sit on the wheeled desk chair I could move him easily from bed to bathroom; that he enjoyed. We used it the next morning.  Although he did walk on his own in the room, he had to be propelled to the car. I did not encourage him to make a pit stop when I gassed the car, he had protective underwear and my wrists were getting sore. 

Once in the driveway at home, he had to be helped again but he'd been sitting for 4 hours straight so I got that. Up the two flights of steps which he handled fairly well, he finally agreed to try the walker which he'd shunned for two years..

With some furniture adjustments he is now able to use the walker from his bedroom into the bathroom. He walks easily when using it but later in the day he forgets where he is going and leaves it behind.  

Throughout the weekend he asked me what people would feel about our divorce. "No," I would tell him, "we're not divorced."  "Separated?"  "Does this feel as if we're separated? You call me every 15 minutes and I appear."  But I know he thinks I might just be another illusion - vivid dream - or hallucination.

Somewhere, locked from daylight, are the reasons for this extreme anxiety. We have a year to find and address them but I'm afraid he will just tell me that we'll talk about them tomorrow and tomorrow or tomorrow..

For now we will go through several weeks of recovery to separate the anxiety from the Parkinson's disease. To exercise the body so that perhaps we can exercise the mind.  Trapped within that brain is a keen intuitive mind and a unique memory which I miss..
Yesterday was a good day.

Although he needed a bit of help getting to the bathroom, on the way back he used his mantra, Head Up or Look Up and Move Forward or Walk Forward.  When he feels it and lets his body respond. it calms him. Then he can shift his weight from side to side in order to both propel and balance his body in a gait which takes him safely past the stairway and to the office. 

His day was calm, pancakes for his breakfast, chilli for lunch followed by pudding, reviewing email and reading news online followed by TV watching and exercise on the mini bike. He knew I didn't feel well and he was able to let me sleep past dinner time until his hunger impelled him to ask me if I preferred he try to open a can of something so that I could continue to sleep. I went downstairs to make dinner.

In the evening he watched Pawn Stars which he always enjoys and Pickers for the first time. He really liked seeing people drive to small towns and old barns or garages looking for relics of the past.  When he grew tired, I gave him his last pills so that he could go to sleep. 

A couple of hours later I heard him talking to the older dog who slept beside me as I sat responding to online corespondence.  I went to his bedroom and held his hand. I told him that it was Rita and not Harry who was sleeping outside his doorway. He looked at me and asked if I saw the garage doors and how we had gotten back from leaving Cleveland.

He asked why we had travelled south to Brunswick about 33 miles from here and ended up at a car dealership.  He was afraid because he didn't have his cell phone and he didn't know how we had gotten so far away. The logistics were upsetting to him.  I explained that he had been dreaming. That his body was here and the travelling had been in his mind; I touched his head. He asked me to tell her where he was. I asked him whom he meant and he said my name. "Do you know who I am," I asked.  He gave the verbal equivalent of a shrug.

This morning without medication he walked to the bathroom on his own. He was calmer as I washed him and helped him change clothes. After another breakfast of gluten-free pancakes which he says taste better than "real" pancakes, he checked his computer and watched HGTV rather than news. He feels comfortable watching construction because he knows the field. He can sit there for a long time, comfortable in a world from his past.

After a late lunch he said he really did want to talk about what I remembered from yesterday's trip. Again I explained that only he held the memories since that "trip" had been a vivid dream. Suddenly I understood that he had incorporated the travels of the Pickers with his memories of days when we used to drive around the country roads of Ohio, looking at farms, fields, small towns, new development and old houses, taking photos.

So many circuits have been rewired or mis-wired. His real history is mixed with recent data. How can he trust what I tell him when his memories of 12 years past are mingled with the new imput of 12 hours ago. Where is reality?  

The meds, the disease create distorted but new memories which he wants to be able to share with me so that he can make sense of it.  My inclination is to want him back in my reality where only hope is a willing suspension of disbelief. I deny his need even by gently telling him that it was only in his head. Then he is sad and doesn't want to talk about it any longer.


Auntie Mom and the dogs

Latest Month

November 2013


These are my jottings. It is so much easier to type than it is to find the pen next to the keyboard and make a few notes which I will subsequently pitch.

It is also easier to type around a cat than it is to write by hand.

Mostly these are notes to my daughter. I asked her to write down her thoughts and observations and decided to return the favor.

While I love to hear her voice on the phone, something about these journals has enhanced my recognition of her life.

I am rejuvenated every time I read her blog because even when there is a plumbing problem she finds the humor as well as the horror. Her life so many hundreds of miles away takes on a keener reality.

Here she gets to comment on my quieter stuff and her memory of those events and pets while I return the favor at ger blog.


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