Monday, March 17, 2014

The Not-So-Excellent Side of Robert

Telling stories about Robert and his drive to spread awareness about epilepsy makes me happy.
A recent moment of "excellent"

Sharing Robert’s proclamation of just about everything as “excellent” makes me happy too.

Seeing Robert become angry and irritable, short-tempered and cranky with most everyone he comes in contact with lately (in your face puppies included) does not make me happy.

For as long as I can remember, Robert has had impulse control issues.  Whether it was “normal” boy and teen behavior or medication side-effects or even seizure side-effects, it’s hard to tell.  He had uncontrolled seizures (with incontinence) frequently.  Sometimes at home; sometimes at school. 

It would be enough to make anyone a little angry. 

He was on numerous medications which did little to control the seizures but did plenty to make him an angry and depressed teenager.

He continued into young adulthood with impulse control problems, poor decision making skills and, at times, aggression. It was bad enough and directed at me enough that I didn’t want to be around him and kept my distance for quite a while. 

Eventually, Robert met Judy, a woman who became his companion and love for many years.  They both had epilepsy, made sure each other took their medications and saw their doctors regularly. They attended church regularly and seemed very happy. Robert still lost his temper on occasion and Judy was known to be quite a hot-head herself but my concern about his anger was considerably less. 

After several years, when it finally became apparent to me and Other Brother that Robert could no longer live on his own (even with Judy), I moved him closer to me so I could more easily manage his care. 

His temper rarely showed itself at the Skilled Nursing Facility where he first resided.  He needed long-term IV antibiotics and the nurses and aides fell in love with him. He was polite, blessed everyone in sight and he was grateful for the food, activities and attention.

There’s nothing like being doted on to tame a temper.

I moved Robert to an Assisted Living Facility once he was done with his antibiotics.  It was a quaint place with little ole ladies and daily bingo with Milky Way bars as prizes.

Robert was certain he was the luckiest man on the planet.

Unfortunately, Judy realized Robert wasn’t going to move back with her and she told Robert she didn’t love him any longer (news she decided to break to Robert over the phone).

The guy was heartbroken! I warned the staff he would act out and, sure enough, he did.  There were a few instances of yelling at the staff but when I asked him about it he would tell me he “only thought that in my head.”

When Robert moved in with Richard and I he was occasionally stubborn but most of the time he was pleasant, declaring all my meals “excellent” (even the ones that start with “peanut butter” and end in “jelly”) and cracking himself up with non-stop jokes. 

Robert lost his temper with Taz, the Crazy Puppy, so we used a positive reinforcement method that involved Rocky Road ice cream and stickers on a calendar.

Taz grew up a bit and Robert tolerated his antics a bit more.  He still had an outburst or two which involved yelling at Taz but they dwindled to once a month or so. 

Recently, Robert tried a new medication but could only stay on it for a week.  It seemed to be making him weak, tired all the time and extremely irritable. 

I had to help him get clothes and briefs on and off as he could barely keep his eyes open. I couldn’t stand seeing him like that and the neurologist agreed he should go off the medication.

Robert has been off the medication for almost two weeks yet his walking is still labored, his legs are weak and he is still extremely irritable. 

He has yelled “shut up” more times in the past few weeks than in the entire time since I have taken over his care.  He isn’t even trying to tell me he “just thought it in my head.”  He is mad and doesn’t care if we know it. 

It takes a while for his brow to unfurrow and his eyes to soften after an outburst.  He eventually gets back to his joking ways in between the angry outbursts but it just isn’t quite the same. 

Last week, I used the Caregiving Daily Log to track how much Robert laughs. I intended to use it all day but by 10:45 that morning he had made himself laugh 18 times.  I thought that was a pretty good indication of how the day would go. I was delighted he was in a joking mood and I laughed along with him at his silly comments and jokes.

His jokes usually are of the “opposite day” variety: “I’ll eat breakfast in the bathroom. Only joking!” or “I won’t get up; only joking!”

I have heard these jokes numerous times before so don’t always laugh with him.  He, on the other hand, laughs quite heartily when he tells a joke. Probably the best part of his silly, oftentimes predicable jokes is seeing him crack himself up at his own jokes.  It makes me smile every time.

I hoped the day of the log was the beginning of his mood turning from sour back to pleasant. 

Unfortunately, that hasn’t proved to be the case.

Robert continues to tell me and Richard to “shut up.”  When I tell him to be polite, he changes it to, “please stop talking.”  Okay, Richard and I are both tempted to engage in an argument with Robert at times but if he is doing something unsafe (or more likely, unclean) or we are hurrying him for the bus in the morning then we will continue talking to him to get him to change his behavior or speed things up.  Up until recently, that did not bother Robert. 

Now we get “shut up” followed five minutes later by a joke.

It’s disconcerting and most certainly not excellent.

Sure, everyone can have the occasional bad mood but this seems more than that.  This seems to be . . . I don’t know.  I don’t want to think it’s a permanent shift in his personality.  Heck, I don’t even want to think this is a shift in his mood for another week. 

Fortunately, Robert has another appointment with his neurologist in just a couple of weeks.  I will talk with him to figure out what could be causing this mood swing and the irritability (not to mention the continued problems walking). 

I want to get to the bottom of this dark mood because I want Robert to find his excellent again.  I see glimmers of it but I want more of it back.

I suspect Robert wants his excellent back too. 


Unknown said...

Oh Trish, it just breaks my heart for all of you that Robert has lost his "excellence". You are so dear to me. I will pray longer nd harder for this to be temporary and that soon he is back to his oh so loveable self. Know that I am always just a text or call away.<3. Pegi

e_journeys said...

Trish, I'm keeping my fingers crossed that this is just part of getting the drug out of Robert's system. I hope the neuro can get to the bottom of the changes. (((Hugs)))

Kathy Lowrey said...

We want our Robert back!

I hope the Neuro suggests an MRI, maybe Robert injured his head during a seizure at some point. Sometimes it doesn't have to be a major jolt to cause a problem.
Just thinking out loud.

Trish Hughes Kreis said...

Kathy, That is something I will ask about at his next appointment. You're right that it could be something like that and I appreciate you making such an excellent suggestion. :-) I think we're all assuming it's because he has pneumonia working on him or his seizures are getting worse as they continue to be controlled. I'll let you know. Thank you!

Trish Hughes Kreis said...

Thanks, EJ. I see glimpses of his excellent being back but it isn't lasting. I am ready for it to be back for good!

Trish Hughes Kreis said...

Thank you, Pegi! I want Robert's excellent back to and I'm sure he does. It can't feel good for him to have everything in the world irritate him. I'll keep you posted - his cough is getting worse so I am leaning toward pneumonia working on him. Trying to get a doc appointment today and will keep you posted.