State Fair – Why Do I Love it Again?

I think we established how much I love the State Fair last year.  There’s really no explaining it other than my love of baby animals, ice cream, high-priced deep-fried food, bungee jumping (clarification: watching bungee jumping), magical mops, gigantic trucks, milking goats, outdoor stage shows, crowds, electronic foot massagers, blue ribbons and Ginsu Knives. 

Well, I love a few of those things anyway.


Re-enactment of Robert's Sister at the Fair

And there’s absolutely no explanation for why I decide to go to the Fair when it’s at least 100 degrees outside. 

I really love the State Fair; I just don’t know why.

This year, Hubby and I took Robert to the Fair one Saturday evening.  It was after a week of running around for Hubby and his back was killing him but he was sweet enough to go with us.  I promised to push Robert in the wheelchair and not stay too long. 

Robert was excited (as excited as he lets on, anyway) and after packing a ‘just in case of an emergency” bag and loading the wheelchair in the car, we were off. 

Once we got to the Fair and parked, Robert sat in the wheelchair and we made our way to the admission line. 

Oh wait.  It’s the “we have to search your bag and run you through a metal detector line.”

They search my purse and Robert’s emergency bag (looking past gloves, protective briefs, a change of clothes, a bottle of 7-Up, medication and several napkins). 

I warn them about the fingernail clippers Robert keeps in the left pocket of his shorts.  They waive us on through without wanding us. 

The ticket booth had a large sign which stated “admission: $5.”  Wow.  That’s cheap this year.  I thought maybe because we were coming late in the day, the price was reduced.

“That’ll be $12.”  I’m confused.  I thought it was $5 per person?  There are three of us.  (I was trying to be helpful).

“That’ll be $24.”  Um.  Still confused.  Feeling less helpful.

“You get in free for being the attendant to the disabled person.  It’s $12 each for the other two.” 

My brain was simultaneously processing “happy” for one of us getting in free and “confused” because the sign said admission was $5 but I ended up just giving her the $24.  No sense holding up the line any longer. 

Plus, I’m not even in the gate and I’m dripping (see re-enactment above).

We decide to walk by the carnival rides and games and then make our way back toward the food.  We told Robert we’d eat dinner at the fair and he was looking forward to a cheeseburger. 

The fairgrounds are not level so I was getting a workout pushing the wheelchair (and avoiding the cables running from rides to some source of electricity).  I had promised Hubby I would push Robert because his back was sore enough and I wasn’t going back on my word.

Somewhere around hill #153, Hubby takes the reins of the wheelchair to give me a break.

“It would be easier if the brakes weren’t on.”

Oh. 

We make our way to a food area since we’re starting to get hungry (I inadvertently really worked up an appetite).

It is absolutely packed so no tables have any space open.  I leave Robert and Hubby on a bench with instructions to scout out a table and I go off to get Robert a cheeseburger, fries and much needed water.

Robert is starting to sweat as much as I am (overactive sweat genes must run in our family).

I weave my way through the crowd and place my order, trying to avoid eye contact or people staring at my drenched appearance.  I don’t usually look like this, people! Haven’t you ever been hot??

(See re-enactment for a reminder).

By the time I return, I’ve lost Hubby and Robert but find a table and sit down.   No wonder it’s empty – we are the only table not in the shade.   That’s okay; it’s a table and I’m not moving.  Hubby and Robert quickly find me (just follow the scent of sweat and cheeseburger, boys).

Hubby immediately offers to go get our food while I sit fanning myself and Robert.  I’m pretty sure he’s embarrassed to be seen with me.  Eventually, we realize we have a great view of the bungee jumpers so spend time eating and watching the daredevils ride the basket up, jump out and then bob up and down on what looks to me to be a very flimsy rope.

Robert was quite delighted with the entertainment. 

Once his cheeseburger was gone and we had finished our veggies and rice, Robert asked about his Rocky Road ice cream.  Sheesh, some habits die hard.

I promised him some ice cream once we got home.

We roamed around a bit more although this time we found activities to amuse us inside an air conditioned building.  We watched children create enormous bubbles, tried to guess the smell inside of a bottle and watched people play with almost life-size chess pieces.

We eventually maneuvered our way out of the Fair and back to the air-conditioned car and off to home where Robert could finish the night with his Rocky Road ice cream.

I do love the fair – I still don’t know why but I really do love it!

73 Days

“Seventy-three days per calendar year for developmentally disabled recipients” are what Robert gets when he lives in an Intermediate Care Facility for the Disabled (aka, New Home) in California. Robert’s home is reimbursed through the state Medicaid program (Medi-Cal) and they will lose funding for the days he is not at the home if he exceeds 73 overnight visits. 

This was unknown to me until after day 51 and New Home called to tell me we were on track to exceed the limit this year.  What?  There’s a limit? I was incensed but not surprised there would be such a rule.

Counting last weekend, we’re at 53 and it’s not yet August.  With holidays and doctor appointments (when I sometimes keep him overnight), we’re on track to be about 50 days short.

I was so disappointed when I learned of this and immediately worried about Robert’s reaction. Robert loves coming over!  I understand New Home has to get paid and understand there are very specific rules about Medi-Cal funding.  I'm still disappointed.

I don’t remember reading anything about a limit on the amount of overnight visits so double-checked the original “move-in” documents.  There’s a passing reference to overnight visits and checking how many days a client is allowed to have but nothing about a limit of 73 overnights (it is in the Medi-Cal regulations, however).

Again, this is another example of New Home not being used to family involvement.  They deserve credit for at least telling me about this rule before we hit 73 days in October (right before more doctor appointments and the holidays).

Yes, take note.  That’s me giving New Home credit for something.

This is disappointing but it isn’t something I can fix with conversations with varying levels of supervisors at New Home. Because I love to dissect rules to figure out where they originated, I have tried to figure out how the magic number 73 was decided.  The best I can guess is the people writing the regulations allowed one overnight per weekend, plus several days for holidays and a vacation and maybe a birthday. 

This year, Robert has spent Saturday and Sunday nights with my family and either my husband or I have dropped him off at Day Program Monday morning.  I love visiting with the Day Program staff on Monday mornings and getting updates on how Robert is doing. 

My husband, Robert and I have a great routine on Monday mornings (hubby makes coffee, breakfast and his lunch while I get Robert washed up and ready for the day) and although it’s taken months, we’ve been able to speed Robert up to a reasonable pace for a workday.

When dropping him off at Program, I remind Robert I will pick him up the following Saturday.  He still calls every Friday to ask if I’m going to pick him up the next day.  I don’t know if he’s actually forgotten or if he’s just worried about my memory and thinks I might forget him. 

Robert clearly enjoys coming over to our house even if nothing is planned although there’s usually some mix of a barbeque, a haircut, movie, card games, word search puzzles or just relaxing watching his favorite television shows. 

There’s always family around to talk to, dogs and cats to be amused by and Rocky Road ice cream to eat. 

The benefits of having Robert over for two nights (three, if it’s a holiday weekend) have been enormous.  Robert loves his weekends here (although I’m not above thinking he’s here just for the ice cream).

I will check to see if there’s a way to pay the per diem rate for any days we go over the allotted amount (it pays to re-read the original move-in documents) but, I suspect, we will be limited to the 73 day rule. 

I haven’t told Robert yet because I’d rather talk to him about it in person and want him to see it won’t be that much different.  We can still pick him up on Saturday and keep him through dinner on Sunday.  He can get ready for bed here and then be driven back to New Home in time for bedtime. 

We’re losing the weekly connection I have with Day Program on Monday mornings but they are so good about communicating that I’m not worried about my relationship with them.

We’re going to make the most of this 73 day limit as there’s still a lot that can be done in 73 days. 

We’re still getting six haircuts and mustache trims a year (well, Robert is; I don’t have a mustache in case you were wondering);

That still allows catching up on 260 episodes of Jeopardy (Robert doesn’t mind repeats);

That’s 73 chocolate shakes and cheeseburgers;

Three word search puzzle books;

At least 30 black, clicky pens;

Close to 292 times of petting Sassy, our Toy Pomeranian, and telling me how cute she is;

Most importantly, it’s 146 scoops of Rocky Road ice cream.

I think we can make this work.

Thoughts on Aurora

I don’t know that I can contribute much on the tragedy that happened in Aurora, Colorado.  I just know I can’t stop thinking about it. 

One man, clearly not in his right mind, changed the lives of the people in that theater (and beyond) forever.  Even if someone was lucky enough not to be injured, the sounds, the fear, the horror of that night is imprinted on their soul.

How many of us have excitedly gone to a midnight showing of a movie we have longed to see?  Planning with our loved ones and our friends to see whatever movie has captured our attention at the moment. Standing in line with others just as excited (when reasonable people should be in bed), buying over-priced, artery-clogging popcorn (have you ever put that butter in a cup by itself – gross!) and picking just the right seat (or taking what we can get if we’re a little late).

Not to intentionally date myself but I have thoroughly enjoyed my share of midnight showings of The Rocky Horror Picture Show (um, yeah, I was a toddler).  

How many have let their teenagers go to the theater in the middle of the night because they and a group of their friends wanted to see the latest Harry Potter or Twilight movie? 

It’s such a normal thing to do.  

It’s innocent.

It should be safe.

It rattles our foundation when something as routine as seeing a movie is suddenly a risk. 

I’m pretty risk adverse.  I don’t jump out of airplanes.  I don’t go mountain climbing.  I buckle my seat belt whenever I am in a car and I drive the speed limit (well, most of the time). 

The riskiest thing I do is eat popcorn at the movies.

There’s not much I can think to do to make the people affected by this senseless tragedy feel better but I want to do something. 

All I can suggest we each do something nice for someone – a stranger, family member, loved one, co-worker – anyone.  Maybe our small acts of kindness can snowball so they will help counteract the violence and tragedy in the world.

It won’t help the people of Aurora directly but I hope these acts of kindness reach them at least indirectly and they know how much the world is keeping them in their thoughts. 

One man who had lost his humanity should not keep us from ours.

I realize this is naïve but couldn’t the world use a little bit more innocence? 

Neurology Appointment: The Good, The Bad, The Ugly

The Good:  For years, Robert was treated for his epilepsy at UCSF which has a prestigious epilepsy center.  Robert tried out the Vegus Nerve Stimulator, participated in a study for the Deep Brain Stimulator study as well as underwent two brain surgeries by world-renowned surgeons.  He really has received the best care by the brightest researchers in the field of epilepsy. 

Even though Robert’s seizures continue to be uncontrolled, his seizures changed from Tonic Clonic (formerly known as Grand Mal) to Complex Partial.  The doctors at UCSF developed a regimen of medication for him which allows him to still enjoy daily activities and to have some independence.  Robert had improved seizure control with the Deep Brain Stimulator until he developed a life-threatening infection which meant he had to have the hardware removed from his brain and chest and withdraw from the study.  

When I took over his care, I grappled with the decision of keeping him at UCSF (which is a couple of hours from where we live) or switch him to the local UC epilepsy center which also has a stellar reputation.   I chose to switch him to the local UC Neurology clinic and hit the jackpot.  It turns out Robert’s new neurologist did her fellowship at UCSF and remembered Robert! 

This was such a special find because here was someone who knew Robert before his steep decline of the past few years.  She would understand how much his mobility and cognition had changed.  Any hesitation I had about switching Robert from UCSF was gone once I found out she used to be involved in his care.  I had high hopes he would get great, personal care. 

She did not disappoint.

At his most recent neurology appointment, the neurologist did the usual battery of tests, listened to my concerns about the increased weakness on his right side and the dragging of his right foot when he walks. She confirmed he showed increased weakness on the right side and attributed it to his recent bout of pneumonia and sepsis.   It’s fantastic to be validated and not have the doctor think I’m a crazy, over-protective sister.

Oh, wait – I suppose she could still think that. . .

Robert was put through a battery of tests:   Remember three words: Apple, Table, Penny (Robert remembered only Table); Write numbers in this circle so it creates a clock (Robert got up to the number 20 before stopping and staring at the page for a long time, something telling him something wasn’t quite right);  What city/state/country is it? (he answered “California” for most of these questions).  

He was asked to write a sentence and painstakingly wrote out, “God loves you.” 

He wrote that same sentence for his memory specialist too and it’s always fun to see the look on their faces when they read his sentence.  They don’t really know what to make of it but always say, “Thank you.”

The Bad.  Robert’s neurologist is leaving the clinic!  Ugh!  I’m sure she has a wonderful opportunity ahead of her because she is extraordinarily smart and really knows her stuff.  I certainly wish her the best but the selfishness in me wishes Robert could follow her wherever she’s going.  She was so sweet with her goodbye and said Robert really has a special place in her heart and told me about the other epilepsy specialist Robert could start seeing.  I have to consider what’s best for Robert and ask Robert what he’d like to do (maybe going back to UCSF is an option) but this was a real disappointment.  We are going to be sorry to see her go but I am excited for whatever she is going to do.

The Ugly.  Of course, this involves New Home.  I have always told New Home that I will take Robert to his neurology appointments, there is no need for anyone else to attend and I will update them on what happens.  For whatever reason, they decided this time the House Manager should go.  They weren’t even going to tell me – the only reason I found out is that I had been asking for Robert’s seizure log for a week and hadn’t yet received it.  I was told I would get it when House Manager came to the appointment. This wasn’t House Manager’s call (I actually think she does a terrific job) but came from “higher up.”  I spent an hour first talking to the House Manager, then her supervisor (who only could tell me they “prefer” to do it this way without really knowing why) and finally talking with her supervisor.  Thankfully, this person was reasonable (although she was standing her ground for most of the conversation).  I eventually convinced her we had been operating this way since Robert moved in!  She relented on the directive and I was able to go to the appointment without a babysitter (although sans seizure log). 

I also found out that the neurologist had written an order for non-generic drugs for Robert and sent it to New Home’s pharmacy back in April.  For some reason, New Home hasn’t been getting these scripts!  So frustrating!

More Good.  IOkay,  can’t leave on a sour note, so I will happily share that I was able to leave my Robert’s Sister flyers at the neurology clinic so others can easily have access to epilepsy facts and resources as well as Robert’s story. 

Bonus Good.  As far as what plan the neurologist has for Robert, she talked about new drugs coming on the market but agreed with me she’d like to try the non-generic medications he is already taking first.  She also said when the Deep Brain Stimulator is approved by the FDA, we should consider that for Robert again since it seemed to help him.  The previous infection as a result of the device was a fluke and may have had more to do with Robert’s living conditions than anything (this was right before I took over his care).

I am very pleased with the appointment and can forget about the trouble with New Home. Most importantly, I am hopeful for these treatment options.

Hope outweighs the bad and ugly any day!