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.