Caregiving.com Virtual Care Conference

I am really excited to share the first Caregiving.com Virtual Care Conference! Denise Brown lined up several presenters covering all sorts of situations caregivers face and topics of interest to caregivers.  I am honored to be a part of what I hope is the first annual conference! 

Richard (my husband and creator of PickYourPain.org) did what he does best: teach! He demonstrated how to safely get Robert in and out of the car, how to use and fold a transport chair as well as many other useful tips involving various medical equipment. I was the behind-the-scenes camera person for his presentation and, well, let’s just say I will be keeping my day job but Robert was a real star!

G-J Heins and I also presented our care tips when traveling with our caree and helpful hints when leaving them in respite care.  Thankfully, this only involved talking with G-J and no camera work!

This was a terrific conference and I was thrilled to be a part of it.  It was made for caregivers – after all, how many of us have four hours to attend a conference?  Not many.  The Care Conference is a virtual conference and can be watched when there is a few spare minutes here and there (or if sitting bedside by your caree in the hospital or care facility). The four hour conference is broken up into several twenty minute presentations.

Please leave your feedback in the comment section so we can convince Denise to make this an annual event.  Tell us what topics you would like to see covered during future conferences or if you are interested in being a presenter.  Let me know what you liked about this conference and what you found to be most helpful.

(I am hoping by the next conference my filming abilities have improved!)

Enjoy! 

Purple Day for Epilepsy

Wednesday, March 26 is the Global Day of Epilepsy Awareness (also known as “Purple Day” thanks to 15 year-old Cassidy Megan, founder of the Purple Day Organization). 

Purple Day 2012

Along with many other epilepsy education advocates, I will be wearing purple. A purple sweater, purple earrings, and a purple bracelet – heck, my nails are painted purple and I might even break out my purple shoes. 

Why am I wearing purple?  After all,

Wearing purple is not going to cure epilepsy. 

Wearing purple is not going to stop the increased seizures Robert is having.

Wearing purple is not going to increase funding for epilepsy research.

Why am I wearing purple?  I am wearing purple because:

My brother, Robert, is 1 of 3 million Americans who has epilepsy;

Robert’s seizures are not controlled but he is hardly the exception. A third of people with epilepsy have seizures which can’t be controlled with treatment and which can lead to brain damage and death;

Robert wants to spread awareness about epilepsy and I promised him I would help;

I want to dispel myths about epilepsy. To be clear: it is not contagious; it does not mean the person is possessed and a person cannot swallow their tongue during a seizure;

Epilepsy is not something to fear;

Robert has Complex Partial Seizures – one of 40 different kinds of seizures;

But mainly, I am wearing purple because:

Robert has had epilepsy his entire life. I remember him as an energetic, curly-topped boy who was notorious for getting lost in shopping malls. He struggled in school but managed to take a few community college courses once he graduated high school (a feat our mother wondered if he would ever accomplish).  Robert lived by himself and with a companion (she also had epilepsy) and they were able to care for each other for many years.

Now, Robert lives with me and my husband because he can no longer take care of himself. He needs help taking his medications, getting dressed and cleaning up in the bathroom.  Robert wears a helmet because his seizures make him fall, he uses a walker because his balance is awful and repeats questions because his memory is pretty terrible. 

I have seen Robert deteriorate through the years due to the uncontrolled seizures, the medications, the surgeries, the accidents and the falls. He has had mood swings due to the medications and can be stubborn and obstinate as heck. 

But mainly, Robert teaches me that it is okay to enjoy the simple things in life. He is happy watching Family Feud and doing his Word Search puzzles (usually simultaneously so multi-tasking obviously runs in the family). He enjoys Rocky Road ice cream more than anyone I have ever seen and would eat it after every meal if we let him.  He has found comfort in what seems to be a direct pipeline to God – he prays for everything and everyone. I do not have this kind of faith but I admire him for his conviction and his beliefs.

Our family never thought Robert would live a long life. We weren’t being morbid but knew that with his determination to be independent and his uncontrolled seizures there was a strong possibility he would die young. He almost did – he had a seizure in a swimming pool as a teenager and was saved only because our dad immediately jumped in after him. He was in a coma for a few days but he survived.

It was after this coma that he felt his purpose was to spread awareness and education about epilepsy. 

I am wearing purple today to celebrate Robert’s determination, his persistence and his purpose. 

Please don’t be afraid to ask me about epilepsy and don’t be afraid to talk about epilepsy. 

Help Robert spread epilepsy awareness – wear purple! 

(And if that means buying a new pair of purple shoes, you have my full support albeit tinged with a little bit of jealousy!)

Leave Room for a Little Sunshine

Rock, meet Hard Place but leave some room for a little bit of sunshine.

Robert’s nighttime cough was worse by Friday even though he was on cough medicine. He was not sleeping well. The coughing and congestion was so severe he threw up a few times in the middle of the night. 

Photo Credit: Matt Stevens, "Flow"

(He made it into the bucket about half the time and since I’m a glass half-full kind of gal, I consider that a win.) 

Every day I take Robert’s vitals: blood pressure, blood ox level, pulse and temperature.  Everything was in his normal range and by Friday he still hadn’t run a fever.  Great news but what I saw was the cough getting worse and the weekend upon us.  Is that a train up ahead?  It feels like Robert is on the tracks and I’m racing to rescue him before the pneumonia train runs him over. 

His cough has been subsiding during the day so he seemed well enough to go to Program. I sent him on Friday but explained I was going to call his doctor to get an appointment.

A few minutes later: “You’re going to pick me up at 1:30?”

Um, no.  It’s only 7:30 a.m. now and the doctor’s office isn’t open yet.  I have to call for an appointment.  Just go to Program and once I have the appointment, I will have the staff at Program let you know when I will be there.

“Thank you.”  He went back to looking out the window for the bus. 

I called the doctor’s office the previous week, too, but spoke to the advice nurse. I explained what was going on: cough, no fever, no other sign of infection.  “Bring him in” advised the nurse and doctor.

Well, no.  I knew I would take him in and they wouldn’t be able to do anything because it isn’t a full-blown infection.  The only thing that would come of it would be me feeling guilty for missing more work.  So I made the decision a week ago to not take him in.

The coughing got worse through the next week and I thought I saw just a tinge of yellow in the mucus. The cough was disrupting Robert’s sleep more and more. The vomiting started.

Robert went to Day Program and this time I called the doctor’s office for an appointment. I was still torn – still no fever, not sure what they could do but I needed guidance.  I needed a doctor to help me out since I was struggling with how to keep Robert healthy. I was wishing my brain would have been able to comprehend science because I would like to be a doctor right about now.

We had a late morning appointment so I picked up Robert from Day Program after handling some morning emails from work.

Not surprisingly, Robert’s vitals are fine at the doctor’s office. We are escorted into the office by a young woman who is always very sweet to Robert.  She calls him “Mr. Wright” and gets no argument from him about “I prefer to be called Robert.”  It sounds very official and important so I understand why Robert doesn’t mind.

Maybe I’ll start calling him that when he is in a cranky mood. 

Robert promptly falls asleep in a chair and the doctor soon walks in.  He looks at me and at Robert (he is the one who diagnosed bronchitis in February). He is clearly wondering why we’re back.

I explained my dilemma: Robert’s congestion is worsening and he’s throwing up at night from it yet his vitals are fine.  I do not want to over-use antibiotics since Robert is already resistant to some.  We need to hold those in our arsenal. 

“Doctor, I’m struggling with this.”

We discussed the pulmonary doctor visit, discussed the situation and he listened to Robert’s lungs. He went back to the computer and read over more notes and looked at a loss.

It was strangely comforting to know the doctor was struggling with what to do as much as I was. 

We are both in agreement that we don’t want Robert on antibiotics prematurely. He was concerned about us going into the weekend, though. He decided to order antibiotics for me to have on hand but to only give to Robert if he started to show signs of an infection.  He then punted to the lung doctor.

“Call him today to see what he recommends.”

We finished up; I thanked the doctor for his help and shook his hand.  He is someone who really does care and strikes me as someone who gets frustrated when he can’t find the answer or come up with a good solution.  As far as I was concerned, this was the best solution available.

At least until my magic wand gets out of the shop.

Robert and I went home and I got him settled with his lunch. Richard took over for the afternoon while I went in to work for a few hours. 

I called the pulmonary doctor and left a message for his advice nurse.  I explained the situation and the “just in case” antibiotics.  The advice nurse called me back after talking to the pulmonary doctor and said he recommends giving Robert the antibiotics.  Don’t wait for the fever.

As much as I struggle with keeping antibiotics in our back pocket in order to prolong Robert’s resistance to them as long as possible, it was a relief to be able to give them. Waiting for the fever is risky – once that happens it is a short trip to pneumonia and sepsis.

Robert has been on the antibiotics for a day and a half.  He coughed last night but didn’t throw up. We let him sleep until noon yesterday; waking him only for his medications (Taz gets extra credit for letting him sleep!). We are letting him sleep late again today.  He has a lot of sleep to catch up on after all that coughing the past few weeks.

It’s been a beautiful weekend of sunshine and Robert seems to be on the mend.  I am not going to think about whether or not this latest round of antibiotics will contribute to him being resistant in the future.  I can’t worry about the future.

These are difficult decisions but, for now, the train has slowed down. Heck, if I am being really optimistic, I will even say Mr. Wright is off the tracks.

I can even see a glimmer of sunshine through that rock and hard place. 

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.