A Gratitude Reminder to Myself

Things seem a little out of control in my caregiving world right now. 

Grateful for caregiving friends

We have mood swings, difficulty walking and cranky behavior.

And that’s just before I’ve had my coffee!  (BaDaBam)

We’ve had medication changes, lots of coughing and changes in seizures.  Robert has hallucinated a few times after a seizure which is very disconcerting for all of us.

I have called his primary doctor and his neurologist to figure out what is going on.

Robert’s pulmonary doctor told me at the most recent appointment that Robert’s muscle weakness we see in his legs isn’t just in his legs but is most likely indicative of increased weakness everywhere – lungs included.  This lung doctor, who also works regularly in the ICU and sees plenty of pneumonia and end-of-life situations, gently broached the topic of Robert’s susceptibility to pneumonia and how eventually he may not recover. He told me we need to think about whether or not Robert wants to be on a ventilator when it comes to that.  

This doctor said the next time Robert gets pneumonia, they will use a scope to get a tissue sample of the infected area and target antibiotics for that organism. He even said he could then prescribe antibiotics for us to have at home when an infection first appears so we can cut down on the hospitalizations.

These scenarios were “when” not “if.”

It doesn’t help treatment now or in the future that Robert is already resistant to some antibiotics. When Robert has a persistent cough I don’t want him automatically put on antibiotics unless there is an indication of a bacterial infection. Neither do his doctors.  I want those antibiotics to work when we really need them!

There seem to be a lot of physical changes in Robert and they seem to be coming quickly.  I log everything (and I mean everything – daily vitals, seizures, behavior) so this is not just me imagining things.  Sometimes I wonder if maybe things haven’t changed and it is me obsessing and imagining.  After all, I thought Robert was declining last year, too, but Other Brother didn’t see much of a change and he doesn’t see him as often as I do. 

Then I look at the log and realize that the amount of seizures has increased. His cluster seizures are more frequent. Hallucinations are new. Coughing is continuous. There is a huge spike in entries about his sour mood.

I go through a list of questions of what can be causing all of this:

Have I become complacent with his medications and not giving him the correct ones? I double, even triple check his weekly container. I double check the medications in the med cup before handing them to him.  No, meds are what he is supposed to be on.

Should the timing of the meds change?  No. I checked with his neurologist and he is happy with the timing of all of the medications.

Is he tired of me telling him to “hurry up” to get ready to catch the Day Program bus? I don’t think so. Why would he all of a sudden tire of his older sister nagging him when I’ve done it our whole lives?

Is he not sleeping well which can lead to increased seizures and a change in mood?  Quite possibly. His cough has been pretty bad lately (still, no sign of infection though). It’s quite a dilemma whether or not to control the cough: if I give him cough medicine to stop him from coughing then the gunk just sits in his chest germinating. If I let him cough it out (which is difficult for him to do since he tries to suppress his coughs) then it disturbs his sleep.

Sometimes I wish I was a doctor so I could know which one of my theories is crazy and which one is on the right track.

Yesterday Robert had four seizures between the morning and evening (not including any he might have had during Day Program which were missed) and uncontrolled coughing in the middle of the night.  I woke up at 2:30 in the morning to Robert yelling for me. Taz and I raced downstairs to find Robert soaked because he threw up while coughing.  Bedding changed, Robert cleaned up and changed and laundry started then back to bed for all of us.   

Bring on the coffee!

Sometimes I wonder if I am too focused on the future and trying to control what that looks like instead of focusing on now and managing the current symptoms and behavior. Worry about Robert getting pneumonia and not surviving in a year or two or five as the pulmonary doctor said is not going to do anyone any good. 

What helps me not worry is believing I am doing everything I can to manage his care to the best of my ability. I advocate for him, I work with the doctors knowing we are partners in Robert’s care and I keep him entertained with his favorite things: word search puzzles, Family Feud, Jeopardy and Wheel of Fortune.

What also helps is being grateful to those that help me through this caregiving experience. My husband, Richard, who deals with back pain and pain management issues quietly comes downstairs in the middle of the night to ask what he can do to help. My daughter makes me laugh every single time we talk. My best friend regularly joins me for Coffee with a Caregiver and listens to my concerns whenever I need her. I know that Other Brother is extremely generous and is only a phone call or email away (although texting at 5:00 a.m. is strongly discouraged).

My caregiving friends, who are going through their own struggles and time constraints and worries, find time to reach out and support not only me and Richard but our entire caregiving community. 

When things seem out of control and I have no idea what the future holds, gratitude is the rock that I hold on to.  I can’t control the future. I can’t control the seizures. I can’t control Robert’s next bout with pneumonia. 

I can control what I am grateful for and how often I remind myself of it.

Right now, I need that reminder; I need to hang on to those I am grateful for. I need that gratitude.

And another cup of coffee.  

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. 

Changing Medication: At What Cost?

Every now and then Robert’s neurologist wants to try a new medication.  Robert is on a litany of drugs right now yet his seizures remain uncontrolled.  Over the past few months, Robert’s seizures have been coming in clusters and have been more frequent. 

Robert - happy and doing what he loves

I have not been a fan of changing his medications even though his seizures are uncontrolled.  That may sound terrible and irresponsible but medication changes have caused horrific problems for him in the past.  Anyone with epilepsy can attest to the often frustrating experience of trying new medications and having physical and psychological side-effects from them.

As a teenager and young adult, Robert tried numerous medications which altered his personality in awful, unforgiving ways leading to a suicide attempt, depression, anger and aggression.

Even a seemingly innocuous tinkering of medications can have consequences. When Robert moved into New Home a few years ago, they decided to change the times his medications were given which threw him into a horrible, downward spiral of numerous seizures. 

Before that, his neurologist tried a new drug that was supposed to work wonders (and does for many people) but that permanently damaged his balance requiring him to use a walker ever since. Not to mention it not having any effect on his seizures.

So, yes, I am a little gun shy when it comes to trying a new medication or changing the dispense time of his medications.

Robert’s seizures were relentless in February. Seizure clusters, longer seizures, falls – scary falls – more than 60 seizures according to our seizure log which is double Robert’s baseline.

At Robert’s most recent neurology appointment, the neurologist again suggested trying a new medication.  He is sympathetic to my reluctance but after our February, I was ready to try something new to help stop or reduce these seizures.

Robert was put on a low dose of Trileptal. With all drugs, some work wonders for people and others are ineffective.  Robert started on the new medication on a Thursday evening. He had a seizure Friday morning at Day Program.  When he came home from Program on Friday, he was extremely tired and sluggish.  He was dragging his right leg more than usual.

On Saturday, Robert spent the day at a care facility, which had been pre-planned.  He was still having difficulty walking but I knew the ladies at the facility love Robert and dote on him so was confident he would be safe.  He had a wonderful day being spoiled.

By Sunday, Robert was having real trouble walking and was argumentative and obstinate. However, his cough was worse too and he felt warm to the touch (although, he didn’t have a fever) so I was concerned pneumonia was working on him again. When he gets pneumonia, he has similar symptoms: walking is difficult and he is cranky.

He also hadn’t had a seizure since Friday morning at Day Program.

While I was quite amazed he hadn’t had a seizure, I was also very concerned not only about an impending hospitalization for pneumonia but also about the new medication being the cause of these symptoms.  We had Robert take it easy on Sunday which wasn’t difficult since he was constantly falling asleep (and then getting upset with us if we mentioned it).   

On Monday I took him to the doctor. His walking was so labored that I used the clinic’s wheelchair to get him into the building. His doctor did a chest x-ray and listened to his lungs.  All clear. He also did blood work and a urinalysis to check for infection and toxicity from the Trileptal.

I called his neurologist to report all these new problems and expressed my concern about the scheduled plan to double the dose within a few days. After trading calls with the nurse practitioner and having to wait until she spoke to the neurologist, I was to keep him on the medication. I was hoping Robert would get used to the medication and get back to his normal, able-to-walk, awake, cheery self. After all, he still hadn’t had a seizure.

By Tuesday, the neurologist had given me the green light to stop the medication. His concern was that Robert was reacting poorly to such a low dose of medication and because of that probably wouldn’t adjust to it.

But he hasn’t had a seizure!

I weighed the benefits of the medication with his tiredness, difficulty walking and his sour mood. I held out hope that he would adjust to this new medication which was somehow working to stop the seizures.

When trying a new medication, there is not only the concern about whether or not they will work and the effects they have on a person but also an overriding hope they will work.  There is one thing epilepsy cannot take from us: hope.  Hope that a new medication or treatment will work. 

At dinner on Tuesday, I decided to ask Robert how he felt with the new med. This is always a crap-shoot because he is such a terrible self-reporter.  Even in the ICU, he answers “excellent” to the question of “how are you feeling?”

I grilled him:

Of course, he replied, "Excellent."

I thought if I asked more detailed questions, I might be able to get a more detailed answer: 

Me: "Do you feel wobbly?"

Robert: "No."

Me.: "Do you feel dizzy?"

Robert: "No."

Me: "Are you having trouble walking?"

Robert: "No." 

Me: "Are you having trouble thinking?"

Robert: Pause. "I don't think so."

The look on his face told me he thought I was having trouble thinking by asking him all these silly questions. 

I gave him the medication that night and the next morning but on Wednesday, he told a staff member at Day Program that he was feeling dizzy.

That tipped the scale for me.  Robert doesn’t admit these things lightly.

The last time he took the med was Wednesday morning.  By last night, he was more alert, a little steadier and much more jovial.  I asked him at dinner if he was feeling any different than when he was taking the medication. He said he felt excellent (of course).  Then he said he had felt dizzy and grumpy but that he felt better now. 

I was shocked he was admitting to how he had felt and stressed the importance of telling me when he didn’t feel like himself (I never miss an opportunity for a lecture lesson).

He is slowly getting his balance back, he is not near as groggy and slow as he was and his sense of humor and light spirit is returning. 

He also had a seizure this morning.  My heart sank a little bit when it happened and I had to write the seizure in his log – the first one of the month which is highly unusual this far in.

I won’t give up trying to find the right solution for him. In the meantime, our Robert is back and able to stay awake long enough to enjoy the life he has.

Sometimes Seizures Scare Me

I don’t like to admit seizures scare me but sometimes they do. 

You would think I would be used to Robert having seizures.  After all, he’s my youngest brother and he’s had them practically his entire life.

Robert's downstairs bathroom

Robert’s seizures have evolved over time from Absence Seizures when my parents first realized he had a problem to Tonic-Clonic Seizures through his middle and high school years.

After a couple of brain surgeries, he now has Complex Partial Seizures which last (for him) between 10 seconds and five minutes. 

Over time, I was able to get used to most of his seizures.  I knew what to expect. Since Robert moved in with us, my husband and I keep a log of his seizures. This log is probably why I was so detail-oriented with my Caregiving Day Log.  It’s amazing how much can happen in 10 seconds Ten seconds doesn’t seem like a long time but try writing down everything you do in 10 seconds. It’s probably a lot more than it seems.

A typical entry into Robert’s seizure log for a 10 second seizure: “While washing his face; rt hand slowly went down; head to rt.”

Typically, he has his seizure, I wait and watch to be sure it doesn’t go into a longer, more unusual seizure and then he finishes up whatever he was doing.  Robert doesn’t like to say he had a seizure and prefers to tell me he “fought it off.”  I used to correct him and tell him he did in fact have a seizure but soon realized how important it was to him to be able to believe he was fighting them off.  I no longer try to take that away from him.  I discreetly log the seizure and help him with what he was doing. 

Those seizures don’t scare me.  I am used to those and recognize they are just part of our day.  They are part of every single day.  My log for February shows Robert having more than 60 seizures – and those are just the ones Richard or I witnessed. 

This week, Robert had two seizures that were longer than usual, different in what happened during them and, frankly, scared the crap out of me. 

Both were during his morning bath.  Robert and I have developed an excellent system for his morning bath which was borne out of necessity since we don’t have a downstairs shower. Robert sits on top of the toilet and I hand him a wet washcloth. While he’s scrubbing his face, I wash his hair. I then give him a dry washcloth to dry his face and hair.  While he’s doing that I get another washcloth wet and soapy and give him that to wash the rest of himself.  Once he’s done, he stands up, holding on the grab bars, and I wash and dry his back.  He usually has a quick seizure at this point and I put a towel on his and hold him up if he starts to lean or fall backwards.

The seizure almost always lasts for 10 seconds and then he sniffs or giggles and I have him sit down to finish drying off. 

One of the scary things about seizures is they are unexpected.  I considered it a win that I could expect this seizure in the morning while washing his back.  I could prepare for it which is what we always want to do with seizures.

Wednesday was different.  Robert was standing; I was washing his back. He dropped his head like usual and I grabbed a towel and held it against him, expecting to wait 10 seconds.

Ten seconds passed and his head went further to the right and his legs gave out. As he was crumpling to the floor, I tried to hold him up to no avail. He’s 213 pounds and feels about double that when he’s dropping to the floor.  I am just not strong enough to hold him up.

I slowed his slump but couldn’t keep him up.  I called for Richard but by that time, Robert had turned his body so he was facing another wall and was already on his way down. I had him under his arms and I was doing my best to keep his back from hitting one wall and his head from hitting another wall (success with the back; not so much with the head). Richard and I  tried to move him so his back wasn’t leaning against the bookcase in the bathroom or didn’t hit his head again but his legs were jammed under him and against the toilet.  I put a towel between him and the bookcase and kept his head away from the wall.

With the three of us in this tiny bathroom and Robert’s limbs going in all directions, it looked like a Twister game gone wrong. 

My fear was he was going to break his leg.

Robert came out of his seizure after a couple of minutes but was very confused. Taz managed to squeeze into the bathroom and proceeded to lick Robert’s arm and ear. Robert was too confused to even manage to look annoyed.

It took quite a while for Richard and me to get him to move so he was in a more comfortable position. Once Robert was back seated on the toilet, I checked him for bumps and bruises and he only had a little scrape.  Thank goodness but it was extremely disconcerting and I was very upset thinking he had come close to breaking a bone. 

Thursday brought yet another different seizure. This time, I was more prepared.  Robert was having his usual seizure during his back washing and also saw his head move further to the right. I called for Richard to bring the walker, thinking I could lower him into the walker before he slumped to the floor. I kept Robert from twisting his body this time but he still slumped to the floor. This time he was on one knee, head against the wall and his other leg was scrunched under him and wedged against the wall.  This time, I feared he had broken his knee cap because his knee was extremely red. 

This seizure kept going.  Minutes ticked by and his breathing was labored, then he was moaning.  

Then, silence.

In that moment, I thought he stopped breathing and I thought of all the children and adults who have died of SUDEP.  I told Richard he stopped breathing and, because of Richard’s position, he could see Robert breathing and told me he was.

Now I could breathe again. 

Within seconds, Robert started pleading, in a soft, pained voice: “Help me. Help me. Help me.”

I could feel my heart shattering into a million pieces.

Is he hurting? Is this what is going on his head with each seizure?  How can I help him?

Richard and I were able to move him a bit and got him up on the toilet. He was extremely confused and groggy but out of the seizure long enough for me to give him an Ativan which is my go-to drug in case of the seizure clusters or a prolonged seizure. (I have Diazepam but it is administered rectally which is usually impossible.  We came close to using it this time since he had been in mid-bath but was able to take the oral medication instead.)

Robert was confused but was finally finished with his seizure. I checked him for any bruising or bumps, Taz got in a few licks and then I helped him dress, Richard prepared his breakfast.  I took him to a previously scheduled appointment with a podiatrist and then after dropping him off at Day Program, I went into work.

Richard was able to find a shower chair for us to use since a short, 10 second seizure while I am washing his back is no longer something I can prepare for. 

This morning we used the chair and it worked perfectly.  Robert didn’t have any seizures and he was able to get cleaned up easily.

The neurologist added a new medication to Robert’s regime.  If it works, we can eventually try reducing one of the other seizure medications. 

I don’t like changing his medications around but he is having way too many seizures.  We have to do something.  Robert started this medication yesterday so we will watch for any awful side-effects and hope for a reduction in his seizures.

Changing Robert’s medication scares me and these seizures scare me but I have to set aside those fears.

That is how I am going to help you, Robert.   

(Richard, my husband and co-caregiver, also wrote about this experience from his perspective which you can read on his website PickYourPain.org.)