Hopeless.

 After a good night's sleep, we got hopeful. It was followed by Sunday night, which was basically a return to sleeplessness. Tim was in bed by 11, up shortly after midnight. He stayed awake for most of the night. About 4ish, he came to bed.

I called the neurologist's office this morning. They asked what we had tried so far. I listed it out. Explained about the caffeine, which I guess was a fluke. Told them how concerned I was. When Tim gets tired, his voice slurs and it is evident that, cognitively speaking, something is off. 

She told me that it would be passed on, and the call came back this afternoon. "Call your primary care provider." 

And so I did. And they said, "Our next available appointment is March 21st." 

I know it is not anyone's fault, but I'm afraid of what is happening here. I need some advice on how to turn it around. I don't know that we can or should wait until March 21st. I stressed that to the receptionist. "I am not trying to be difficult here, but my husband had a stroke a month ago, and this is a life changing event. I want the best outcome for him, and I feel like I'm foundering about on my own here."

"Call his cardiologist," she suggested. 

"He doesn't have a cardiologist," I told her. 

"Who ordered the Holter Monitor then?" she wanted to know. 

"The neurologist. I've already tried to get some advice there and they directed me to call you." 

Long story short, she was sympathetic and we've got an appointment March 21st at 2.  I still don't know what we should do (or not do). I am reading and we are totally winging it, here. 

Tim doesn't drink beer, but he bought himself a six pack tonight and cracked one open. We're getting desperate here. 

Saturday

 Saturday was a good day. I'm not exactly sure why, but Tim decided that he wanted to drive up to Salamanca, which is part of the Seneca Indian Reservation. 

It is interesting because the reservation is not part of the United States. They are their own sovereign nation, which means that they have their own laws, their own government, their own law enforcement. 

So you have incidents like this. 

If you look at the comments, you will see that the police are taking a bit of guff. "He's at his mother's house" is a general theme, and I'm sure that the police do know this. However, the New York State police cannot walk up to a house on a reservation and arrest someone. The arrest would have to happen off reservation. The tribal police could arrest him, but they have no obligation to hand him over to the New York State police. The police need assistance knowing when he is headed off reservation, and where they can nab him.

Years back, when Cara was still in high school and driving home after work, there was the Bucky Phillips incident. That was scary. Roadblocks were a regular thing for Tim headed to and from work. This went on for months. They suspected he was being smuggled off and on the reservation by friends who were allowing him to ride in their trunks or whatever. Long story short, after months, they finally did take him in a cornfield about five miles from our house. To this day, everyone talks about Bucky Phillips and how he was able to elude capture for so long because he was an Indian who knew how to live off the land. False. He eluded capture because he was breaking into empty camps and laying low until he'd eaten all the provisions and then moving on to a new cabin. 

Nothing heroic about the man at all. He was a thief and a murderer.

A man had his camper stored for the winter in a big garage. He was very surprised when he opened the place up in the spring. Turned out that Bucky had spent some time in his camper and left a bunch of information behind, including the registration to his final stolen car which he crashed on our road and ran through the woods to that final Cornfield of Destiny. 

The Seneca Nation makes their biggest money from a giant casino, which would be illegal anywhere outside of the reservation. They offer luxury rooms at low prices. Low priced buffets. Big name performers. The expectation, I suppose is that once they get people in the door, they will do some gambling.

They also sell gas and cigarettes at very low prices. They do this because their treaty with the government means that these goods are sold to them tax exempt. They sell that gasoline back to us. Just as a comparison, our gas is $3.85 a gallon. We paid $2.54 a gallon on the reservation. If we had been willing to wait, we could have gotten it at $2.42 just down the road. The lines were just awful though. Tobacco products were not taxed for a while, but as I understand it, they have been taxed since 2018. The Nation is not required to collect the State and Federal taxes when they sell them, though, so a pack of cigarettes will cost you nearly $10 (50 cents a cigarette, if you can believe it!) locally, but you can buy reservation cigarettes for about $4 a pack. They also sell the fireworks that cannot be sold off reservation. Our state had some pretty strict guidelines on what constituted legal fireworks. The reservation sells the 'good stuff' that you can't get anywhere else.

I'm not going to editorialize on the situation. We don't gamble and avoid the casino on pure principle. I quit smoking 22 years ago, so cheap tobacco products do not draw me in. 

We enjoy going to the pow-wows. When Tim had to drive through the reservation to get to work, he always filled up on the reservation. He also alternated the vehicles he was driving. Tim has also been known to stop in and get his fireworks on July 4th. (A couple years back he scared the bejeebers out of himself. He had no idea what the fireworks would do. It went off and shot high into the sky ~ a totally illegal firework that could be seen for miles. (We were both struck speechless. William was thrilled and wanted us to light another.) 

The latest money makers are the pot dispensaries. They really are every where. We probably saw two dozen of them in an 45 minute drive. Some of them are right in a row, within sight of one another.

Drugs and alcohol are big problems on the reservation, and it struck me as unutterably sad to see a sign on a local church which had a pot dispensary right next to it. "Don't use drugs" it said.  

We were there to have a looky-loo (boy, Ed, I do love that) in the Salamanca Antique Mall. We bought nothing, but it was a fun day out. 

Unexpected Development

 Tim's had difficulty sleeping at night since he got home from the hospital. In the past month, we've tried two OTC sleep aids. Neither worked. We tried melatonin. It didn't work either. We tried those relaxing nature sounds. All that happened is that I woke up at o'dark thirty in a befuddled state, wondering why Tim was showering in the middle of the night. It was the relaxing sound of a summer rain. Tim's side of the bed was empty. I turned off the phone app and went to find him.. 

We've had our tiffs. I caught the man sneaking a Pepsi after 5PM. We debated it. I mean, he's already struggling with sleep...why on earth does he want to make it worse? My sister chided me for being his warden. I don't think I'm doing that, but really, sometimes someone HAS to be the one saying this stuff. 

It is a confusing role to be playing for sure. 

But then, later that night, at 3 AM, he came out to the livingroom. He could not sleep. He defiantly had that Pepsi and....he came right to bed and fell asleep. He couldn't wait to tell me that little factoid. 

I thought about it. They use methylphenidate (Ritalin), a stimulent to control ADHD. My understnading of it is that with Attention Deficit, the brain is overactively collecting stimuli with no ability to set aside the small stuff in order to focus on the the important things. We'd tried everything else. I've read that neuroplasticity is the brain trying to refire, to map new routes. Maybe, like ADHD, a stimulent was needed. 

So. Last night before bed, he drank a Pepsi. He slept for nearly 6 hours. What a relief that is...for both of us. 

Will it work for the long range? I don't know, but last night was promising. 

Shocking the Amish

 Yesterday was not a great day. It was one of those days that left me feeling ineffective and useless. Tim is not sleeping at night and his exhaustion makes him difficult. I can't fault him really. I'm not at my best when I'm tired either, but it gets discouraging dealing with his frustrations on top of my own. I was just tired out. I tried to come up with a post last night, but couldn't. Some days are just better left unexamined, I guess. I gave up and went to bed and Tim tried hard not to fidget. 

Today, Mattie needed to get to Corry for a 9:30 appointment. Her sister, Lyddie, had an appointment as well. I was looking forward to an excuse to get out of the house for a morning. 

I waited in the car as they had their appointments and when they came out, we zipped over to the grocery store. We pulled into the parking lot and we saw an Amish lady loading her groceries in a van. Mattie immediately said, "She is not from our group." Curiously, I asked how she knew. She looked at me as if I was blind. "She dresses differently." I looked and I couldn't really see it, but then, I was driving the car and had my eyes on other things. Her clothing certainly looked no different to me. 

As I parked, she closed the hatch of the van. Her driver waited in the vehicle. She set at a brisk pace. Mattie and Lyddie laughed. "Now she's going to go to the dollar store just like we will."

Making a joke, I said, "No. I bet she's going to the vape shop." 

They laughed merrily at my joke, but the laughter died away as the woman opened the door to the vape shop. They said in shocked voices. "She IS going into that store!" They had no idea what to make of it. 

But after  some pondering, they decided that she must be buying tobacco for her man. 

I got some great deals at the grocery store. The store is known for their meat selection and they had a great deal on pork roasts. I also got beef liver as a special treat for Tim and I some night when William is having supper with his mom and stepfather. I got three bags of bell peppers on discount, to chop up and toss into the freezer. Things like that. 

The Dollar store had a good deal on Raisin Bran, so I picked up a couple boxes for Tim. In no time at all, my car began filling up with bags and boxes. They certainly do not waste a trip out. There was one more stop at Walmart.  Mattie and the children are making bird houses and she needed to buy the paint for them. 

Driving there both women gave astonished shouts. They spied, with their little eyes, two Amish women coming out of the laundromat. "That's just LAZY!" they said in unison. You have to understand, when I got to Mattie's to pick her up at 8:45, she had her laundry already hung out. Let me tell you that laundry for 10 people is no small feat. She has a gas powered wringer washer in the back room. She came rushing out of the house with the front of her dress still splashed and wet from the wash water. It was a bitter day with a sharp wind and she laughed when I told her that she couldn't be out in the cold with her wet dress. She pulled her cape around her and said, "It'll dry." 

Her sister had an elevated pulley clothes line that stretched behind the house and across a field and when we went down her long driveway, the line was full.  It held an unbelievable number of diapers flapping in the wind. That's a lot of work happening before 9 am, and yet they were watching two Amish ladies coming out of a laundromat. 

They pondered that in shocked silence as well. Eventually they agreed that some of the blankets are awfully heavy and are too big for the wringer.  If these women had a batch of blankets to do, it was only reasonable to use the laundromat, they supposed. 

We had a pleasant morning running errands. Finally, we were headed home. We stopped first to collect Lyddie's four children, three little boys and a girl from a neighbor's house. As we waited, Mattie said, "This house used to be my uncle's house. See the hitching rail over there?" (The place where visitors would tie up the horses.) Once my cousins were playing horses. One of the boys was playing the role of the horse, and at the end of his trip, the youngest boy was tied to the hitching rail as any sensible Amish would do. An 'English' driving by had seen the child tied and called the police on them for tying their child out like an animal. 

We laughed comfortably together. 

It felt good just to have a morning away. When I got home, I made a good rub for one of the pork roasts and popped it in the oven. I chopped up two gallons of green peppers for the freezer. I got the base going for a pot of stuffed pepper soup. The broth will be chlled over night and then the hardened fat skimmed off tomorrow. When supper was over, I got my second crock pot out and simmered the rest of the pork roast off the bone for barbecue pulled pork sandwiches.

Mattie and Lyddie would be shocked at my methods as well, I suppose, but I worked around my old kitchen, getting a lot of stuff done in pretty short order. I headed out to pick up William and today just felt like a better day. 

Thoughtless

Today, I went over to pick WIlliam up from school. It was raining hard and had begun to freeze. When I get there, I always get there just before school lets out. so that I am one of the last people in line. It's crazy to me that parents will get there and sit FOREVER just to be the first in line. William hikes up the sidewalk to the car at about the same time that the first cars have collected their children and begun pulling out. 

So, anyways, I'm sitting at the back of the line as usual, reading a New Yorker magazine. The right lane is for cars. The left lane is for school buses. I see a teacher walking up to each car window, speaking to the driver of the car. I wondered what was up. 

When she got to me, I rolled down my window. The poor thing was dripping wet. She said, "We have an emergency. I'm going to have all the parents move to the teacher parking lot to pick up their kids." 

"Sure," I said, and I started my car. There were two cars behind me and she continued on down the line. 

People, people, people. 

Not one car moved to the parking lot. Probably 12 cars in front of me and not one parent moved their car. Not one car started up. .

I couldn't believe it. 

As I said, I was at the back of the line and so I did a three point turn pulling behind the last bus to turn around. I hate to back up in a school zone. I pulled up to where the teacher was still standing. I apologized for backing up, and said, "Why aren't people moving?" 

She said in a very frustrated voice. "They totally blew me off!" 

To be honest, if the first car in line just sat there, none of the rest of them had no choice but to sit there as well, being pinned in with buses to their left, the sidewalk to their right, cars in front and behind them too, but I gotta tell you, the scenario boggled my mind. 

It was quite a day, weather wise. We had snow. along with some gusty winds, we had sleet, we had freezing rain, we had two thunderstorms. It was a good day to stay inside. Tim put in a couple electric receptacles in our bedroom. He's meant to do that for a while.

I was supposed to take Mattie to an appointment at 1:30, but after considering the roads, she decided to cancel. I wasn't sorry. I had made a pot of chicken and rice vegetable soup expecting to be away in the afternoon. I just used the extra time to bake a batch of blueberry muffins. 

I headed over to school to be appalled. I am not sure what the emegency was, but I cannot imagine not being able to get to my kid. 

Thanks, Mother Nature

 Today was another day spent scrubbing baseboards. 

I was working away when the room started getting dark. 'Storms coming," I thought in a distracted sort of way, scrubbing on with my brush, wiping it dry, and then sliding on the floor to repeat the process on the next stretch of baseboard. 

There was a rumble of thunder. Our first thunder storm of the year! I stopped to appreciate it, sitting right there on the floor, holding my scrub brush in the dim room. 

It did not take long for the storm to move on, but I enjoyed it while it lasted. In the matter of 20 minutes, the room was flooded with sunlight once again.

You know, I have been struggling lately, and I needed the reminder: No storm lasts forever. 

Spam

'Blogger spam' is interesting. About half the comments it flags are from regular commenters who (I'm supposing) are logging in on an unfamiliar device. The other half of the comments it catches are previously published comments. I'm not sure what triggers it to go back in time and pull comments it didn't flag on the first go around, but there you have it. Interestingly, about half of THOSE comments are my own! A couple days ago, I was amused (in an unamused way) that a very obvious spammer had been able to post his very obvious spam comment. 

I mean...really, what is the point of having blogger spam if it does not work? Just one of those things that I don't understand. 

But today was especially interesting. I checked blogger spam, and for the first time, it blocked an actual spam message. I feel like I should be saying "Good blogger!!!! GOOOODDDD!!!!" and maybe offering it a cookie. 

No Rules Weekend

 William is 12 now and the great birthday weekend is done. He had a roller skating party (theme: Stranger Things). Four of his friends came. One of them came home later to spend a 'No Rules Weekend'. 

I picked them up from the rink at 10 PM. 

He came home to a 'new' bedroom. His aunt and uncle had seent in him quite a collection of soft goods to redo the bedroom look. That was surprise number one. We also set up Noah's bed, a mattress on the floor. Just for the weekend, there was no limit on sprite from the fridge. He had a snack bar in his bedroom filled with chips, his favorite candy bar, boxes of raisins, slim jims, nuts, cheese crackers, breakfast bars. No limit snacks. Unlimited screen time. No bedtime. 

The boys disappeared upstairs and we did not see much of them. They were playing roblox, each boy on his own device, but playing together. I assume there was some 'old school' gaming going on as well, since the controllers were on the floor. 

Sunday morning, they were gotten up at 10 for the breakfast of William's choice: Lucky charms pancakes with chocolate whipped cream and a large pile of bacon. 

At lunch, we all went to his favorite hamburger place and ate dessert first. 

Minibike riding. 

Back home. 

No Rules Weekend officially ended at midnight Sunday night, and is followed by 'No School Monday', having been granted a four day weekend by the school district. I'm not sure why and no questions were asked. It was just the serendipitous bonus to his already awesome birthday weekend. 

Houdini missed his boy something awful. He wandered around downstairs looking for William. This morning, he wandered into our bedroom and mewed lonesomely until I got up. 

Mortified.

 And today William is 12. 

We spent a great amount of time in the attic yesterday, going through boxes. He and his auntie were skyping. Out of the blue, Cara suddenly remembered that she had a Playstation 1 tucked away with her college things. 

(She has a lot of college things.)

William was agog at the thought. He's also afraid of the attic. You have to understand that I was having a pretty pleasant day moving furniture and scrubbing the wide white baseboards when he came flying down stairs to beg me, urgently, to help him find a box that contained this magical device. 

I said I couldn't and I finished scrubbing, and then, well...I could. I had no excuses left. So up to the third floor I went and then ducked through the attic door. Cara was giving me directions through William's tablet. The console was not where she thought it was. (Of COURSE...) There began a methodical search, from box to box. William lost interest and went back to his room to continue talking to his aunt. I moved from the back of the attic forward looking through one box after another. 

After some diligence on my part, the console was found and pulled out along with a bunch of cords and boxes that I could not identify. William eventually heard me calling him and came back to the attic door. He snatched the console up with great excitement. Cara gave me a few instructions on where the games might be. I toiled on alone in the dark attic with my spotlight, gathering slivers in the seat of my pants as I slid across the floor from the back of the attic to the front of the low attic. I finally found those games right there in plain sight in a bin right next to the door. 

I carried them down to William's room where he was hooking everything up with his aunt's help. A mighty cheer went up. I was sent upstairs one more time to look for the memory card, a quick find. It was in the bin where the games were. 

She and William gabbled on with great excitement. They both were quite enthusiastic. William was showing her the back of his television. She was telling him what to hook up where. William was so excited his hands shook.

I stood there dirty, disheveled, slivers, no make up. I looked at Cara and said, "I hate you right now. With a fiery hate." She laughed and laughed. 

It was then that I remembered my hair appointment. I went as I was because I was 15 minutes late. 

A Bedtime Story.

 Sadly, our thunderstorm did not happen last night. It is cold this morning, but interestingly, all the snow has been removed from the forecast for the week ahead. That makes me cheerful. 

Last night, Tim and I decided to hit the hay early. He really hasn't been sleeping well at night, which leads to sleeping in later in the morning, something that he hates. As unhappy as he is about that, afternoon naps make him even more out of sorts, not to mention even less sleepy when it is time for bed. 

So, come 9:00, we were cozied up in our bed. Tim said, "Come on over here," and I turned to him and...that stupid alarm went off on his heart monitor. After working without a glitch for 48 hours, the monitor was indicating that the sensor was not doing its thing. 

We sat up in bed, but the monitor was giving us directions that did not apply to the apparatus we had, and the beeping went on long enough that I got my cell phone and called the customer service number. A polite unflappable woman answered the phone 

The nice customer service person said, "Is your husband in the room with you?" 

I said, "He's right in bed with me."

'Well, good then, he'll be handy." She indicated that we should ignore the commands the monitor was giving us, that they didn't apply to us. I put her on speaker phone as she tried to help us through a trouble shooting process. The alarm beeped on. There's no way to shut it off. In the end, she sighed and said, "I'm sorry, but you'll have to remove the patch."

And so I got the warm water and the soap, and scrubbed the patch off. And of course, every time that I tried to peel it back, Tim was reflexively grabbing at my hand to push it away. 

"Quit grabbing at me!" I said, peevishly.

"I can't help it," Tim growled, in a husky voice. 

And the nice customer service lady said, "Why don't you just put the sensor on the charger over night, and I'll have someone call you tomorrow morning."

Just like that the phone call was over. 

Lord knows what she thought. 

We looked at each other, turned off the light and laid back down on our respective sides of our bed. Somewhere along the line, we had lost that loving feeling.

Spring (temporarily)

 It was so windy today. 

The clouds cleared off and I learned that I was wrong about the weather. It is going to rain tomorrow, with thunderstorms tomorrow night. 😕

Tim got a couple hours of sound sleep and woke up refreshed enough to go work on his truck. I decided to work in my garden. I'm taking a breather on the garden while making a plan for next year. We are having a problem with blight, and each year the garden gets a little less productive. So we decided to turn it into a berry patch. I moved four blueberry bushes that did not see to be happy where they have been for the past two or three years. I planted raspberry canes as well. 

It was so warm, and the wind was blowing so hard. A tree had blown over in our woods and you could hear the branches cracking and falling in the wind. Not a day for walking in the woods for sure. 

I dug and I planted, and I couldn't help remembering Winnie the Pooh:

That got me to thinking about when the kids were young. Winnie the Pooh was the first book I ever read to them. Fresh from their baths, we'd all pile on the bed and read a chapter or two of Pooh before they went to bed. They loved those stories. 

And now I am a grandma. The grandchildren love those stories too. 

I worked in the dirt and the sun and the wind and time traveled in my mind. 

When I was done with my digging, I walked back up to the garage where Tim was working at his truck. He wasn't having a lot of luck. The bolts were tightened way beyond what a reasonable person would have done. But he was working at it, pondering and problem solving. Things like that would piss me off, but he does love a challenge. He leaned against the garage door with a smile. He wanted to keep on working. 

I had seen my sister's car in her driveway, so I headed off in the warm wind for a visit, thinking about Tim and the last three weeks. I know full well that not everyone gets their happy ending in situations like this. 

My sister wasn't in the house, but I took off my sweater and headed back to my house in my shirt sleeves. The walk was not wasted. 

It got up to 68 degrees today. Tomorrow it will be cooler with rain and that possible thunderstorm. By Friday, we will return to winter. Spring is coming though, and today I got to play in the dirt. 

Morning

 Tim didn't sleep much last night. The new Tim is cautious of being overtired. He's asked me to drive him to the retirement property so that he can replace the waterpump on his beloved old squarebody truck. I like that he's asking for help when he thinks he needs it. He's watching himself, so I don't need to. 

Well. 

Not so much, anyway. 

Today is supposed to be 65 degrees. He has made up his mind that the waterpump must be done today. 

It doesn't need done today and I pointed that out. I am perfectly willing to drive him there. Not a problem. However, if he is tired, he will exhaust himself in the three hours there.  When he gets his job done, we will drive home and he will change into comfortable clothes, sit down on the couch and fall soundly, soundly asleep. He will sleep so soundly that when bedtime comes, he will not be tired. Once more, tomorrow morning, he will be tired. 

I pointed out that there are other 65 degree days coming, that this is just the first of them. His waterpump was bought last fall and has waited all winter. Another couple of weeks is not going to do it any harm.

It is 8:32, and William is dropped off at school. Tim is snoring from the back of the house, a good sound. He's sleeping deeply. Houdini is stretched out in front of the heater. If I look over and speak to him, he stretches
and answers in a lazy sort of way. 

Me? I've had my tomato on toast, I'm drinking coffee, reading blogs and pausing to watch the sky. A storm is coming, and the wind is moving those dark clouds across the sky. In the gaps between them, a brilliant sun breaks through. The office moves from dark to sunny, dark again, sunny again, dark once more. I watch the clouds and daydream in the silent house.

A Return to Normal

 Well, Tim survived the patch change. I tried to be as gentle as I could, using alcohol to try to disolve the adhesive, but in the end, I just gave it a quick yank. We did shave the area for the next patch. 

So far, this week has seen a big return to normalcy in our house. His mind is getting quicker. There have been no disconcerting questions. He still tires more quickly than usual, but that's to be expected, I would imagine. He seems more sure of himself. He sounds more like himself. 

I cannot tell you what a relief that is. 

William is 3 days away from turning 12. His mom has a party planned for him at the roller rink. The theme is 'Stranger Things'. His friend Noah will come back to spend the night after the party. He's requested pancakes and bacon for breakfast. I've got quite a bit of wrapping to do. His aunts and uncles went a bit nuts this year and boxes have been arriving steadily. 

Being preoccupied by a birthday party seems very normal, doesn't it?

Another normal thing? Houdini. I watched him chasing William all over the house tonight. Hard to believe that he was ever such a hidey cat. He runs and plays and pounces. Strings, balls bounced down the stairwell, the red dot. He is quite sociable. He doesn't like to be picked up, but he's gotten to the point that if you do pick him up for a cuddle, it doesn't send him off to hide for a week. In most cases, he just gives you a wary look from across the room, gives his fur a quick lick and then goes back to whatever he was doing. 

Pretty normal cat behavior. 

It will be 65 degrees tomorrow, and they are calling for our first thunderstorm of the year tomorrow night. I love thunderstorms and am looking forward to that too. All this leads us right back to cold and snow for a few days next week. 

Pretty normal for spring, I'd say. 

Alarmed

 The Holter monitor has given us precious little problem, amazing to me, because I put it in place myself and, not being sure of my skilz, I expected to do something wrong. Of course that was also the day that I set the day, date, time, and alarm on William's new watch. The technology force was strong within me that day, and I'm here to tell you that this is a rare occurance. 

Anyway, last night, we got an alert from the monitor. It was one a.m. ONE. O"CLOCK. IN. THE. MORNING. Tim sat up blearily. Although my face was buried in my pillow and I was making half awake noises, had this been an actual emergency, I'd have been ready to spring into action. (Really. I'm pretty sure.)

"What's it saying?" I asked. 

He said, "It's congratualating me on finishing my first week of monitoring." 

Did I happen to mention that this was happening AT ONE IN THE MORNING?!! Because I really feel like it is important to the story. 

The alarm went off multiple times last night. Not all of them were congratulatory in nature. I think the patch might need changed. 

Tim's been putting that off for as long as we can. I read the instructions several times before beginning the process, laying everything that I needed out. Studying the placement carefully. Only when I was 100% convinced that I knew what I was doing, did I begin what I was doing. I forgot one step though. It suggested shaving a small area of the chest where the patch was to be placed. 

Ever positive, I pointed out that shaving would not be necessary after we rip the current patch off. 

Ordinary Day

It is no secret that I've been jealous of all the pictures of flowers blooming in the UK. Here, it seems like spring is a ways off yet. No flowers here. 

But today, we slept in. After a leisurely cup of coffee, I spent some time writing a letter, something I've meant to do for a while. Tim wanted to go for a walk after lunch. It was warm enough that I didn't need a jacket. It felt like spring! 

Today was the high holy day of football. I'm not much interested in the Superbowl. It was our year to host it (we alternate with friends.) The week before Tim had his problem, he was outraged to see that our television 'package' removed Fox from our line up. Under normal circumstanced, I'd say removing Fox was a public service but they were the station that won the rights to broadcast the SuperBowl. We would not be watching the game at our house. 

Our friends quickly invited us there. I couldn't go. William could not stay out that late on a school night. I knew that Tim wanted to see the game. I knew that his friends were anxious to see him after the events of the past few weeks. I made a rack of barbecue ribs and a batch of scalloped potatoes and sent Tim off. 

That felt like a very big deal to me. It was a late night and he was driving himself. I still worry about the driving, even though his friends live just 15 minutes away. I gave myself a stern talking to, but did ask Tim to call me if, for any reason, he did not feel that he could drive home. 

William, Houdini and I had a quiet night. We watched a program about Centralia, PA that William found fascinating. 

Tim started getting tired in the final quarter. He decided not to push it and headed home, calling me on the way. 

The plain ordinariness of this day is what made it so extraordinary. 

New Day

It was a better day today. 

A Moment

 It's a dance, really. We circle around together but not quite together. 

I am hypervigilent, but trying not to hover. 

He sits at the computer, printing out and organizing stuff for the tax man. He is on top of all the business stuff, just as he always has been. He drives short distances. He shops. He does his little projects around the house. 

It all feels so normal and I sometimes find myself feeling as if we dodged a bullet, as if we're good, it's all going to be okay. 

But then, randomly, there are those moments that knock me sideways. The frustration because he can't find the 'L' key on the computer. Or he's forgotten how to spell his son's name. Or he can't remember which two pills he takes in the morning and which two pills that he takes at night. He's forgotten how to use his cell phone. Maybe, suddenly, he's stuttering and he looks as surprised to hear himself as I am. His hand starts tapping against something. "It sounds like a woodpecker," he says, trying to make a joke of it. 

I know for a fact that a million other people would give anything to be in my shoes as they struggle to care for someone who's suffered a major stroke with both debilitating mental and physical changes. 

Tonight, he scared me. Just a little thing, but right away, I begin talking. I want him to talk back. Is his speech slurred? I study his hands, his feet, his face, and I try not to betray any sign that I'm assessing him as I assess him.  

He's a quiet man. He's always been a quiet man. He looks at me as I talk. If he answers, it's just a word or two, but that's how he has always been. 

Finally I burst into tears. Sorrow? Frustration? Just pent up fear? I don't even know but once I started I couldn't stop. 

He didn't know what to do, so he's gone on to bed. He was tired. Probably the best thing for him. I imagine this is a scary time for him too.

I sit here in the dark in front of a lit screen and I feel ashamed at my own weakness, but I wonder if he will ever tell me that he loves me again. 

I await...

 I expect to hear loud cheers and enthusiastic applause. 

*ahem*

After a mere one hour with an extremely tiny booklet (2 x 3.5 inches) and two you tube videos, I managed to set the day, date, and time (both digital and analog) on William's birthday watch! Furthermore, I set his alarm. 

*takes bow* 

Quiet Day.

We made a delivery for the Amish, a case of brown sugar. Mattie also needed to borrow more canning jars to finish off their butchering. 

I got there and once again, Mattie's whisking around the kitchen like a barefoot queen, multitasking on a grand scale, scolding and dressing Rudy, fresh from a nap, running around in long johns.  She was baking cookies, and she had the largest cookie sheets I've ever seen in my life. They held 50 cookies. We were already nibbling on chocolate chip cookies and oatmeal raisin cookies with our coffee as she made raisin filled cookies. All the kids were fresh home from school, and they were making butter. One of the boys was washing the muddy buggy. Their dirt road is a mess. 

It felt so good to sit in that warm kitchen drinking good coffee, nibbling cookies, while talking and playing memory and pick up sticks with the two youngest girls. 

When we went down the hill, slipping and sliding in the mud, I felt as if I'd had a little vacation. In exchange for the jars, they sent us home with beef sticks, sausage, Amish hotdogs and cookies. We were actually leaving and they were chasing us out to the car with more stuff. Levi chased us out with the hotdogs and said, "They don't taste like your hotdogs." I studied them in their jar. "That's not a bad thing, actually." 

The Holter Monitor arrived today. It looks very straight forward. We'll get Tim set up tomorrow after William is in school. 

William's 12th birthday is in a mere 10 days. Hard to believe. His birthday gifts arrived today. A holographic style light for his bedroom and his first grown up watch. Unfortunately, I need to figure out how to set the watch. The date is wrong. The day is wrong. The time is wrong. I am not a technological savvy person. The darn watch will be a tougher set up than the monitor. 

Oh, and I almost forgot: 

Jaycee, where on earth did you get off to????

Reality Bites

 Today was the follow up visit to Erie. 

In my mind, it had all neatly connected up: the cold that turned into a never ending cough, which got him the antibiotics, which led to the C-diff, which led to the dehydration, which led to low blood pressure and the kidney issues, which led to the stroke.  Like dominoes falling, one right after another. The great thing about that, really was that it led me to think that we could simply avoid a repeat of this by making sure that he never, ever got dehydrated again. 

I liked the story the way that I crafted it.  

But the neurologist had a different story. The little things that I noticed: his different colored hands, his tremor, his vocal change, his stammer when he's tired. the fact that it takes longer than usual for him to process a question...all those things they saw too. They also saw things I hadn't noticed. His right eye drifts off to the side. the fact that his left side is weaker than his right (which has the tremors). Lots of stuff. For the first time, I heard it said out loud. The spots on his brain were very small, but there were an awful lot of them. 

They are not happy that he still hasn't gotten a holter monitor yet. They believe that there has to be a-fib. They also believe that the tremor stuff might be seizure activity, so he's off for a EEG. They were very pointed in their discussion. They also consider it very possible that this might happen again. 

It was a quiet trip home. 

The good news is that we found a local primary care doctor. We stopped on the way home and signed the paperwork to get everything shifted from his previous doctor to the new one. She's affiliated with the hospital, so she'll already have access to all of his hospital information. 

I feel much better about that part of things, at least. 

Suggestions?

 Since we are more or less homebound at the moment, we're looking for Netflix or Amazon Prime suggestions. My daughter suggested "The Best of Men" which I looked up. Exactly the sort of movie that we enjoy. Unfortunately, it is not available here on American Amazon Prime. 

What are you watching? 

Go!

 It's hard to believe that it has been over a week now. The big news is that we think we have a handle on the coughing. Tim commented that he felt as if when he was outdoors for any length of time, the cold air triggered his coughing. It tripped a trigger in my brain, and I went on an internet search. I discovered cold induced coughs are a variant of asthma. They suggested running a humidifier, which we have been doing, 24-7. 

After all this time: it helps. It does help. I've been bringing in the wood. I've been keeping Tim inside. (It is bitterly cold today). I marvel that the solution was so simple. We'll see if it is successful in the long term.

Tim has a follow-up appointment in Erie at the neurology clinic. After all the craziness to be seen, he got in pretty quickly, so that's a good thing. I'll be interested to hear what they say. As usual, I've got questions. Lots and lots of questions. It will feel good to have someone to pose them to. 

We've got a lead on a PCP, finally. The contact system is so outdated here. Her name was given to me, and I looked her up. The internet provided her number. When I called, the answer was curt. "We are not accepting new patients." Turns out she left the practice years back and struck out on her own. Unfortunately, I got this information a bit late in the game. I will have to call Monday. Say a little prayer that she is accepting new patients. 

Tim is different, and the changes are small. Sometimes there is a slight stammer. Today, he couldn't figure out how to open a text on his phone. He brought the phone to me saying, "I haven't used the phone for so long, I guess I've forgotten." His voice is a bit different. He is tired a lot. He still gets a hand tremor when he's tired. Sometimes he needs help with his computer. 

But...he remembers. He changed spigots out, just because he needed something to occupy him. He knows whose rent is due, what bills are due, when the garbage man comes, stuff like that. He picked up the phone and called his friend from memory. He remembers little details without being reminded. 

We are pretty lucky. 

Initiative

 I really feel as if it would be unfair to leave the topic of Tim's care without pointing out that we met some very wonderful medical people along the way. 

The night shift ER staff seemed very 'hands off' and unconcerned. You could hear them laughing together at the nurses desk (it was a very quiet night). Meanwhile, we were keeping a vigil with Tim. They addressed our needs, but only when we walked out for help. When we asked for another chair, they found one. When the IV ran empty, they came in and shut off the beeping alarm and left the room. That was concerning because his blood pressure would begin to drop when the fluids were stopped. You could literally watch it. We were told that a new bolus could not happen until the doctor ordered it. Tim needed toileted. They handled that. 

We knew that he was going to be transferred to Erie as soon as there was an available bed. We knew that it was a waiting game. He could not be transferred upstairs to an empty bed there due to insurance reasons. So. We waited in the ER. 

It was a discouraging and frightening night. 

Shift change. 

Blessedly, blessedly. Allie and Amy came on board. When an IV ran out, Allie called the doctor and got the okay to start another. She was the one who recognized the c-diff and reported it to the doctor. Her abilities were respected enough that the doctor accepted this without questioning it. Treatment for that began immediately. Two days after he was home, the hospital called to tell us he was positive and that we needed to start treatment. I shudder to think what would have happened if this had continued on untreated for those five days. 

In short, Allie took initiative. She was in and out of the room continually. She encouraged us to ask questions. I always have questions and she always took the time to answer them. She always took the time to find out the answers if she didn't know. Amy was quieter, but she was right there, every step of the way. When Tim said he was hungry, he wasn't told that the doctor hadn't left any instructions about dinner. They called the doctor and asked. The doctor gave the permission. Tim was having a grilled cheese sandwich and tomato soup in the matter of minutes. 

Small things, undoubtedly, but they were critically important. At least they felt that way to us. 

Initiative is the difference between good medical care and bad medical care. Initiative. 

If a nurse or doctor takes initiative, things happen. They become the driving force. A lack of initiative allows the nurse to wait on the doctor instead of calling the doctor. (note that there was a doctor in the ER that night, just a phone call away). A lack of initiative allows a nurse to say, "It's not my responsibility to correct a phone number." 

It may sound simplistic, but I believe that is the key to good service. When one person steps up and takes responsibility, things happen. 

The Very Model of Efficiency

 When Tim was discharged from the hospital, he was given a fat packet of instructions. In these instructions was the directives to make a followup appointment within one week. The address and the phone number to the Neurology Clinic was given. 

I have spent a lot of time calling that number. A LOOOOOTTTTTT of time. Today, I called UPMC and wound up talking to a customer service person in Pittsburgh, who helpfully looked up the information of the clinic in Erie. 

I was gobsmacked to find out that the discharge paperwork provided the wrong phone number. 

Understand that this wasn't a simple matter of someone writing down the number wrong. This was a print out. The clinic, the address and the phone number were the letter head. I couldn't believe this. 

When I got hold of the clinic, the receptionist curtly told me that the error was beyond her control, that there was nothing she could do about an incorrect number on hospital paperwork. She also said that it is not the first time that she heard the complaint. 

!!!!!!!!!!!!!!!!

I said, "Listen. This is a scary time for people. I'm trying to be proactive here and to make sure that we are dotting all the i's and crossing all the t's. Being provided the wrong contact information is kind of horrifying. That needs to be corrected, and I don't feel that is an unreasonable patient request."

She briskly went about making the appointment. 

I knew she wasn't going to do jack about the wrong number being provided to patients.

So, I called up on the ward and spoke with the nursing station. I told her that we had been provided with discharge paperwork that gave us the wrong number to the neurology practice. She efficiently interrupted me to give me the correct number. 

I said, "Yes. I've got the correct information now, but I spent a week calling the wrong number over and over again. The phone just rang a couple dozen times, and then disconnected. Nothing to indicate it was a wrong number at all. Don't you think that needs to be corrected on the discharge paperwork?"

Long pause. Efficient voice resumes. "That might be an old number.." 

This time I heard another voice in my head. Lt. Gunderson. Brisk no nonsense guy standing in front of a formation bellowing "RESULTS NOT REASONS!"

I said, "It doesn't even matter why. It needs to be fixed." 

The reply came back. "I'll pass it along."

I disconnected the phone. 

She's not going to do jack about the wrong number being given to patients. 

I looked on line and found an e-mail address that promised that UPMC wanted to hear our feedback to improve their services. I sent off a sharply worded e-mail about not only the wrong phone number but also the fact that we were discharged with a prescription that needed to be filled and given before we even got home. Surely enough medication could have been provided to get us home, or better yet, through a Sunday evening. 

I resumed looking for a primary care doctor to get that cough taken care of. 

The phone rang. The caller ID said it was Hamot. I was a bit shocked. That was a pretty quick response to my complaints. Except when I picked it up, there was a woman telling me she had a prescription for a Holter monitor for my husband. Color me gobsmacked once again. 

"I spoke with a young lady Tuesday. I was given the choice between taking Tim to Erie to be outfitted for it or having it mailed. I chose mail because he has c-diff and a 1 1/2 hour car ride is difficult right now. This is supposed to be on its way."

"Great!" she said. 

"No," I said. "I need you to follow up on this right now, and make sure that it IS on its way here. I'd have figured that it would be here already."

Efficiently, she put me on hold. 

She came back and said that it was all taken care of and that I'd be getting it sometime next week. 

Yeah. Bet me. She placed the order for it while I was on hold. Nothing had been done last Tuesday. 

This is crazy. All of it. 

Worried

 Today has been a tough day. 

Tim doesn't sleep very well at night. He is cold. The electric blanket makes him too hot, even if it is turned off and just laying on the bed like a blanket. 

He slept on the couch again last night. I don't know how long he was awake. He sure was tired today.

I had placed an order for Mattie and I had printed off a picture of a quilt for Grandma. I thought maybe a car ride up on the hill would keep him awake. He's always curious about what Levi's got happening. We talked about it last night and he was looking forward to it. 

Strangely enough, Mattie called this morning. Levi had butchered a cow. She'd run out of wide mouth jars. Did I have any? Yes. Yes I did. Could we maybe stop and pick up some pizzas for them? Yes. Yes we could. 

The children were all home from school and they had a little production line going. Even the youngest children were doing their part, cutting the meat from the bones to go into glass jars and put into the canner on the big wood stove. Mattie was just pulling a batch of jars out of the boiler. She had the next batch lined up and ready to go in. 

We didn't stay for long, maybe an hour. They were busy. When Mattie called, I told her what had happened, and that we couldn't stay long. 

The thing that I noticed, for the first time, is in that happy setting, Tim is not right. There is something different. The whole butchering operation is something that he would have been hugely interested in. He'd have been right in there helping, talking. He sat quietly, watching. 

He ate one piece of pizza. Mattie got him two jars of her good peaches. He did have a bowl of peaches, but  it seemed like he was quieter than usual. I don't know. Maybe it was my imagination. But the more I watched, the more sure that I was that it was not. 

I really, really wanted it to be. 

When we got home, he lay down on the couch and fell fast asleep. I sat on the other couch watching him, listening to him. That is not his usual snore. 

I know that I sound like an idiot. 

He did not eat supper. 

Tonight he is coughing just as bad as ever.  Nothing is helping. 

I am calling a lung specialist tomorrow. I am hopeful that he will see him sooner rather than later. 

But tonight, I'm just as afraid as I ever was. 

Today, one of his old friends called to check in. It's not that I don't appreciate it, but I handed the phone to Tim. He handed it back to me. His friend wanted me to tell him. "How is he REALLY doing?" 

A flame of impatience raised up in me. Hell if I know. And furthermore, I'm not going to discuss him in front of him. I stifled my temper. I know it is fear based. Quite nicely, I said, "He is a lot better than he was, but I am still worried about him." I handed the phone back to Tim. 

Coming Along

Tim is cold all the time, which is ironic, because he's not the cold blooded one is this family. Reading up on it, they say that this is pretty common in the aftermath of a stroke. I kept waking up and finding him gone, getting up to check and finding him sleeping on the couch with the wood stove going full bore. We have an electric blanket, which I love. It's like having a giant heating pad. He doesn't like it on the bed because it makes him too hot. It has been in the closet for the past 4 years.

I dragged it out and got it set up and plugged in. I am hoping the warmth helps him get a good night's sleep. 

Other than that, we had a very encouraging day. He "did his homework", which is what he calls paying the bills. He didn't need (or want) my help. 

We went to Lowe's so that he could pick up some things he needed for a project. He knew exactly what he needed and where the things were at. He took time to look at the clearance tools like he always does. He bought two pair of Kobalt mechanic gloves for less than $4 a pair, recognizing that as a very good deal. 

He wanted a whopper from Burger King.  He didn't have the appetite to finish the burger than he wanted so badly. I could see that he was wearing down.

We had to pick up the balance of his prescription that was partially filled on the way home from the hospital. I wanted to have some Gatorade on hand and we needed a few supplies. I was trying to hurry but Tim can't rush. He made it though. 

He tires easily and when he's tired, his voice is low, but clear, not slurred. His hand shakes, mostly his right, but at times both. But really, his thinking is pretty darned amazing. I watch him and marvel over the fact that just 6 days ago, he knew I was his wife, but couldn't remember my name. 

I really thought our life as I knew it was done, yet here we are. Here we are. 

Houdini loves when I sit down on the floor and talk with him just before bed time. He loves to be petted and rolls all around on the floor next to me, rubbing against my legs. Tonight after many a pet and a skritch, I stopped and sat quietly with my hands folded. He head butted my arms a few times. Finally, he climbed into my lap and rested his head on my hands.