Goodbye 2012, Hello 2013!

We’re at the end of 2012 and there are Top Ten lists for everything (and I mean everything!).  I love those lists, although a list of “Top Ten Apologies” makes me pretty skeptical when Libyan President Mohamed el-Magariaf and Vice-President Biden are listed alongside Kristen Stewart of Twilight fame.

Really, Time.com?  I think you just made my list of “Top Ten Disappointing News Outlets.”

Anyway, I love almost all lists so had the “brilliant” idea to ask Robert what he enjoyed about 2012.  I thought it would be a fun way to create our own Top Ten list to end the year and get started on 2013.

Sometimes conversations with Robert are pretty, hmm, well, short.  He’s been known to surprise me, though so I didn’t know what to expect.   

I started by asking, “What did you like about 2012?”

Robert took a bite of his Rocky Road ice cream and said, “A lot of things.” (Even though he didn’t say it, I’m pretty sure “Rocky Road Ice Cream could be at the top of his list so we’ll count that as Number 1).

Um, like what?

“Watching movies.  There’s a lot of good movies at Day Program.” (There’s Number 2)

That’s nice.  What else did you like this year?

“It was excellent.  I had a good time.” (Nothing specific but good times definitely count as Number 3)

I reminded him he was in the hospital this year (thinking this would trigger gratitude for getting better).

“I had a good time there too.”  (Not the answer I expected but I have no doubt he did have a good time!  While I was worried sick as he battled pneumonia and sepsis, he was also getting plenty of sleep, eating in bed and being visited by nurses around the clock.  Let’s count “good times in the hospital and getting better” as Number 4)

Is there anything else good about 2012?

After scanning the family room, “My walker is good too.” (Number 5 – we’ll take it)

Is that pretty much it? 

“Yeah.”

He didn’t quite make it to ten but I can think of a few more to add to his/our Top Ten List of What Made 2012 Wonderful:

6.  2012 was the year of New Home getting a terrific new House Manager!  Robert may not realize how important this is but it has eased my mind tremendously having someone there with Robert’s best interests at heart.

7.  Robert’s adaptable clothing from Buck and Buck.  He now doesn’t have to worry about buttons on any of his shirts or pajamas and I’ve even switched him to Velcro closing jeans.  After I worried he wouldn’t like the switch to a Velcro close in his jeans, he now won’t wear any other kind!

8.  Robert and I were part of an interview for the AARP produced PBS program, Inside E Street.  Robert giggled when I told him people would be asking for his autograph once he was filmed and he loved every minute of it (even though he was sick at the time and ended up in the hospital the next day!). 

9. Robert was able to visit our grandmother for the first time in years and, although the visit was much shorter than anticipated, Robert’s happiness meter was off the charts. 

10.  Robert may not have been able to meet all of the amazing, new people and fellow advocates I’ve met by advocating for Epilepsy Awareness, but I’ve told him about everyone and he knows people read about him on the computer.  He always says, “That’s nice” when I tell him about it. 

Thank you for sharing 2012 with us!  I look forward to many more moments in 2013 that will make the Top Ten next December 31.  Robert will be doing what he loves: eating Rocky Road Ice Cream and seeing the “excellent” in everything.

Have a very Happy New Year filled with many moments to make you smile. 

Down to the Wire

Today is Sunday, December 23.  Two days before Christmas and Robert is still working on his Christmas cards.  Ack!  The pressure!  (Oh, who am I kidding? Robert feels no pressure whatsoever since he does not have any concept of deadlines).

  

I picked up Robert this morning and he is staying with us until Wednesday morning (although, remember, that’s just between us). 

 

Robert working on the Christmas Cards

Robert had a pile of unopened Christmas cards at New Home which he enthusiastically read once we got back to my house.  I explained who everyone was if he couldn’t place them and he said, “That’s nice” after reading each card.  Being the borderline hoarder that he is, he will no doubt save them forever (I just realized I do the same thing!). 

 

Robert is feeling better (except still having intense seizures) and I am also feeling better.  No one else in the household has caught the nasty bug going around (knock on wood) so we are getting back into the swing of things.

 

Which, for this time of year, means working on that never ending pile of Christmas cards. 

 

Yep.  Robert is still working on them.  Unfortunately, he will not be able to finish them all but it isn’t because he hasn’t tried.

 

Our conversation this afternoon went like this:

 

Do you want to work on your Christmas cards, Rob?

 

"Sure!"

 

How about just signing ‘Love, Robert’ on the cards?

 

Robert looked straight at me, “Okay, I will.”

 

Then proceeded to write several, painstakingly slow sentences. 

 

He wants to send the cards but he also wants to write what he wants to write.  What can I do – I have to pick my battles and, call me crazy, but rushing him on Christmas cards can't be a battle (you know, because of that whole peace on earth and good will toward men thing).

 

I am resigned to the realization this is probably Robert’s last year sending Christmas cards.  Unless we get started in July.  Hmm, maybe . . .

 

I apologize if you don’t get a Christmas card from Robert but please don’t think it was because we weren’t thinking of you!  The cards weren’t in any particular order and he just did them as he could. 

 

So if you didn’t make the cut, don’t take it personally (and know that if we do cards next year, you'll be the first in the pile!).  Robert basically writes the same thing on all his cards, only changing the salutation and signature so please consider this a Christmas card to all of you! 

 

“Dear Uncle/Cousin/Friend.  I, Robert Wright, want to wish you a very merry Christmas and a very Happy New Year.  God Bless You.  Love, Your Nephew/Cousin/Friend, Robert Wright”

 

Merry Christmas and Happy Holidays!!

 

 

 

What Epilepsy Means to Me: Gallery of Interviews

The Sacramento Bee created a gallery called “The Faces of Epilepsy” based on some of the interviews done here during Epilepsy Awareness Month. 

This thrills me no end since you’ve heard me say I cannot let Epilepsy Awareness be confined to one month.  This point was driven home repeatedly throughout November when people would apologize profusely for not being able to participate in the interviews.

Because they were dealing with the after effects of seizures. Or their child was having breakthrough seizures. Or there were medication issues that needed to be resolved. 

Epilepsy does not care what month it is and seizures do not care what a person is doing.  Just this weekend, Robert had a few seizures while in the bathroom getting changed.  I try to balance his need for privacy and independence with keeping an eye on him at all times so he is safe.  During one seizure, I caught him so he didn’t fall but the other time, I was giving him privacy and he fell against the toilet, giving himself a pretty good raspberry on his back. 

Seizures don’t say, “Hey, I’m coming so get to a safe spot, clear your calendar and get comfortable.” 

Maybe the unpredictable nature of epilepsy makes me admire those dealing with it all the more.  These people have strength, resilience, persistence and guts.  And they all have to have plans and back up plans and the ability to throw all plans out the window at a moment’s notice. 

I am so grateful to everyone who participated in the interviews in November and I learned more than I ever could have imagined from each and every one of them. 

I’ve gained new friends as well as fellow advocates in our fight against the stigma of epilepsy, in our fight for more education and awareness as well as funding of epilepsy research.

If you have an epilepsy story to share, I want to hear it.  Please email me at robertssister@att.net and I will tell your story.  Your story is important in the fight for epilepsy awareness, education and funding. 

Enjoy the slideshow of just a few of the amazing people I was able to interview in November:

 

 

This Did Not Happen

Because Robert lives in a care facility paid for by his Medi-Cal coverage, he is only allowed to stay overnight somewhere else 73 nights in a year.  That may seem like a lot until you count up weekends, holidays, vacations plus the occasional doctor visit that happens late in the day or early in the morning where an overnight visit would be more convenient or when someone is sick and might be better cared for by family. 

I am not asking the state to pay for Robert to stay at my house overnight but do want the care facility to be paid.  I also don’t want to have to pay the care facility close to $200 a night for taking him out of the facility on night 74+. 

Call me crazy but that seems a bit excessive.  I mean, there are a lot of nice spas/hotels charging a comparable rate and I guarantee you Robert is not getting spa service over here at our house.  He might get Rocky Road ice cream or chocolate Frappuccinos from Starbucks but spa service – um, no.  Nobody is leaving fancy chocolates on his pillow. (Quick note to hubby: I wouldn’t mind fancy chocolates on my pillow!).

Apparently, the state doesn’t care about the actual days – just overnight visits.  I could, theoretically, pick Robert up first thing in the morning and return him to his care facility a minute before midnight and it wouldn’t count toward the 73 days.  Considering he lives 45 minutes away (one way), this solution isn’t that appealing to me. 

Although, for purposes of this story, that’s exactly what happened. 

Oh wait.  First, you are getting sleepy.  Very sleepy.  Look at this shiny object.  You are getting sleepy. 

Now repeat after me:  Robert did not stay at our house overnight this week more than one night. 

Now that we’re clear about what did or did not happen, and I can probably take the 5^th if ever asked about it and I know where to find a good lawyer, I’m pretty confident I can continue with the story.

I picked Robert up at his facility on Saturday and it was immediately clear he had a cold.  By Sunday morning, he was running a fever but it went away by mid-day (letting him sleep all morning and loading him up on Tylenol helped).  We had a family party to attend and, although we were late, we got there just in time for lunch and a gift exchange.  To Robert, this was perfect timing.

Once we were back home, I got Robert settled on the couch to relax with a box of tissues and a Frappuccino.  We had several recordings of Jeopardy so he couldn’t be happier.  While he watched television (and dozed), my daughter and I tackled the outdoor Christmas decorations!  Richard came out to figure out the most efficient way to hook up several dozen extension cords (you think I’m kidding) and after just a couple of hours, Phase I was complete!

Robert continued to feel the effects of a cold and didn’t eat a lot at dinner.  By Monday morning, he was again running a fever and coughing quite a bit.  Being the paranoid sister that I am (hey, his hospital stay in May for pneumonia and sepsis has me a little wary of colds), I took the day off and had him rest and see a doctor.  She ordered a chest x-ray mainly to appease me which turned out to be clear. 

 

When Robert has a cold, he gets very wobbly and it’s as if his legs turn to Jell-O. He moves slow to begin with but when he’s sick his usual two hour routine in the morning of bathing, dressing, eating and grooming (all done independently) become impossible tasks without help.  It takes me a few minutes to know whether or not I should step in to help because I don’t want to step on his independence but once I do, he’s always very appreciative.

 

“Thank you for putting my right sock on.”

“Thank you for putting my left sock on.”
“Thank you for putting my right shoe on.”

You get the idea.  He may be sick, but he’s polite.

He woke up without a fever on Tuesday (yay! We’re on the mend!).  He went to Day Program but Hubby picked him up early so he wouldn’t overdo things.  Robert and Richard spent the afternoon together while I was at work.  Robert watching Jeopardy and relaxing and Richard washing all of his bedding (Now that I think about it, I guess I should be leaving Hubby chocolates on his pillow). 

I came home a bit early that day and made potato soup for dinner.  Robert told me how delicious it was but me, still bitter about how he raved about Richard’s pancakes, jokingly said, “Just say that 10 more times and I’ll be happy.”

Looking straight at me, he repeated, “This is delicious.  This is delicious.”

Rachel said, “I think he’s counting.”

Richard said, “He’s up to four.”

He continued: “This is delicious.”

“FIVE,” we all shouted.

“This is delicious.”

“SIX.”

“This is delicious.”

“SEVEN.”

On it went until we shouted “TEN” and broke into cheers! 

Robert grinned from ear to ear.  After dinner, he went to bed a little early and seemed well enough on Wednesday to last a whole day at Day Program.  He was still wobbly but Day Program is flexible enough that Robert could enjoy a quiet activity for the day.  Just a movie and quiet time and then back to his care facility where he can stay until this weekend. 

They know he’s been sick and are keeping an extra eye on him and (hopefully) helping him get around until his legs get their strength back and his balance returns.

It’s this sort of collaborative care and communication with his other caregivers that I wished the state was concerned about instead of how many overnight visits one client may (or may not) have.  After all, isn’t this sort of collaboration what keeps people healthier?  Out of hospitals?  Happier?  Saving the state money?

I’d love for the system to allow more flexibility but, in the meantime, if someone asks if Robert stayed with us for a few extra nights this week, in true Sergeant Shultz fashion my answer will be a resounding:

“I know nothing.” 

Oh, you can wake up out of your trance now.  Just remember, this was all a dream and this did not happen.