Thursday, April 12, 2018

Juggling, Teamwork and a Little Hope

My IT guy at work juggled three oranges at work the other day and made it look pretty easy.  (I then told him to get back to work.)  I have tried to learn to juggle but I am not quite coordinated enough. The juggling I do involves caregiving, medical appointments and various emergencies. 

Caregivers are experts at this type of juggling and sometimes even while we work. 

Thankfully, Richard helps with juggling our appointments.  We have a loose division of duties: he takes his mom to her appointments, I take Robert to his, Richard goes to his own and I go to my own.  (Hopefully, mine will be short-lived.  My MRI results came back normal(!) and I only have a follow-up with the neurologist. Then I’m crossing myself off the appointment list!)


We have pre- and post- surgery appointments, wound therapy, neurology, epileptologist, GP, pulmonary, ENT and cardiology appointments.  There’s pain specialists, physical therapy, lab work and x-rays when something is not quite right (like suspected pneumonia or artificial knee pain).

With the regular appointments and even ER visits or hospital stays we somehow manage to keep on track.  (It helps that Richard, Carol and I coordinate our calendars to be sure we all have the same information.) 

Sometimes we have to call in extra help, though.  Richard’s brothers, either Mark or Jim, will take Carol to her appointments if they conflict with one of Richard’s appointments.  Rach jumped in to take me to the ER so Richard and Carol could stay home with Robert and has stayed home with Robert while I pick up Richard from the hospital. Mark and Carol jumped in to help with Robert when he was sick and I needed to take Richard to get staples out of his leg.  

In other words, we juggle.

And we are very lucky. We are extremely fortunate to have the support of our families as I know many caregivers do not have that option. 

I am extraordinarily grateful to our family for their help and, while it is difficult for me to ask for help, sometimes I actually do it.

Robert has a VEEG (video EEG) coming up next week which requires him to be in the hospital for five days.  It also requires someone to be with him all the time.  As in, day and night.  To be clear, I am talking about all 24 hours in a day.  For a week.  And, we have to be alert and awake the whole time in order to push a button when he has a seizure.

I do tend to take on a lot but even I realize neither one of us can stay awake all week.  Heck, I don’t even think it would be possible for just me and Richard to do it.  (Although, that was our initial plan.)

I texted Other Brother for help.  I explained the situation, told him I was making a schedule and asked if he was able to come up to be with Robert for a shift.

“You mean like through the night?”

I know.  It’s a big ask.  It would be nice to have an extra relief person so Richard and I weren’t doing the whole week.

“How long are the shifts?  Are there any food or bathroom breaks?”

I gave him more info about how the whole thing works, logistically.  Of course, I am just going off of the booklet the hospital mailed us – I haven’t actually done this before so don’t know how it will actually go.  I mean, does the nurse come in and poke us if we accidentally doze off?  Does the guest chair trigger alarm bells if there’s no movement for a few minutes?  Or does it just spring us out of the chair to wake us up?

After ribbing him for all of his questions (as only an older sister can), Other Brother offered to take two of the overnights which was a huge help. I thanked him profusely!

“Can I take a laptop?”

Oh crap. I thought for sure this was a deal breaker. 

Um, no.  No laptops or phones.  We can’t have the signals interfering with the monitoring equipment.  I did suggest long bathroom breaks if he had to use his phone . . .

Carol and Robert share a special bond
I created a schedule for the three of us and sent it to Other Brother.  He reviewed it with his wife who suggested he stay in a hotel for a few days so he’s not driving back and forth on no sleep.   He can do his shift, sleep in the hotel, drive the hour or so back to home/work and then repeat it the next day. (Good thinking!)  Other Brother revised the schedule, adding another overnight shift for him with even longer hours.  What a wonderful surprise and such a huge help!

Carol is planning on holding down the home front and doing laundry and caring for the dogs while Richard and I take turns at the hospital and I try to go into work for an hour or two.  In fact, she feels ready to move back to her own home but is postponing it so she can help us out. (We wish she wouldn’t move home but that’s a different story.)  Rach and Matt are planning visits to the hospital to check on us and to the house to check on Grandma.  Mark even offered to take a shift but he recently started a new job and I don’t want him missing work on our account. 

We are very lucky indeed!

We all see the value in the VEEG and know how important it is for Robert to have this testing.  This is a step toward getting the Neuropace for Robert which seems to be a very promising treatment for him!  Robert’s new neurologist thinks he is a great candidate for the Neuropace and thinks this could significantly reduce his seizures.  If that happens, he might even be able to reduce some of his meds.  Can you imagine?! 

Everyone is willing to pitch in because we all see the possibilities of this new device.  We see the hope.  We see Robert’s fervent wish and prayer to be seizure-free as close to possible as we’ve been. 

This is truly a team effort of juggling to support each other.  That is what family is all about and I am so grateful. 

Tuesday, April 10, 2018

Four for Four

Well, that didn’t last long.  Three of the four people in my household were hospitalized at least once since December.  A couple made two visits. 

Now it’s my turn. 


That’s been the refrain in my household too. 

Yep, me.

I had to start my own folder
 A little over a week ago I started feeling numb on the left side of my face, tongue and hand while I was getting Robert ready for day program.  It happened a few times so, of course I thought what all caregivers would think, I’M HAVING A STROKE!!!  And, just as many caregivers would react, I waited to see if it went away.  I mean, we’re busy! We have people to care for! 

(I did stick my tongue out to see if it was lopsided and also looked to see if my face was droopy but everything looked fine.  I was just tingly!)

I went to work (yes, I went to work; stop yelling at me).  Only after it happened a few more times and I told my best friend about it and she yelled at me to call the doctor or she would take me to the ER did I actually call the doctor.

I really tried to get an appointment that day.  I certainly didn’t want to go to the ER!  I talked to an advice nurse who said he would send an urgent message to my doctor and someone would call me back.  He also said if it happened again I should go to the ER.

It happened a few more times at work while I waited for the doctor to call me back.  I dreaded wasting hours in a crowded room with sick people only to be told that I was stressed.  I know I am stressed!

The doctor didn’t call so I went home. 

(Now is the moment all of you can yell at me for not immediately heading to the nearest emergency room.)

Carol made us all a nice dinner; I got Robert in bed and changed.  Then it happened again: numbness on the left side of my cheek, half my tongue and my left hand.  I took my blood pressure and it was extremely high.

At this point, even I (being the most obstinate caregiver on the planet) decided I should go to the ER.  I walked into the living room and told Richard and Carol in one sentence that I was having numbness on my left side and that I should go to the ER.

Both of them looked at me and said, “You?!” 

Yep, me.

Once I told them this had been happening all day, their looks changed from confusion to a combination of worry and anger. 

Life is complicated right now so since Richard had just had his second skin graft surgery and was on crutches, Carol can’t/shouldn’t drive (although she offered) and Robert needed someone home with him, I called my daughter. 

I explained what had been going on and told Rachel I needed a ride to the ER. 


Yep, me. 

Rach picked me up and we drove to the hospital, both kind of in shock that I was the person having a medical problem.  On the way, we talked about how I will probably hit our deductible of our high deductible health insurance – and it’s only March!  She assured me I didn’t have a brain tumor because we already have one of those in the family and the odds of two of us having one had to be astronomical.  We talked about her work, my work, Richard’s leg, and everything else we tend to talk about with a few laughs thrown in (because that’s what we do). 

In between topics, I apologized profusely for taking up her Friday night.  She wouldn’t hear of it but we both were convinced we’d be in the ER all night long.  Throughout the entire ordeal, Joelle (the best friend mentioned before) and Richard texted to find out how it was going. 

We checked in upon arrival and marveled at the empty waiting room.  We immediately were escorted back to a couple of nurses.  They checked my vitals and weighed me, laughing politely when I told them I had very heavy shoes on.  My blood pressure was very high but I wasn’t that concerned since I was very stressed out that I was having a stroke.  Then I stressed that I was going to actually cause myself to have a stroke because I was so stressed out. 

It is no fun to be in my head with Worst Case Scenarios swirling around.
We were then led into another waiting room (D) which was packed.  Ahh.  Everyone is in these back rooms – I am sure A, B and C were also packed.  We found one seat which Rach insisted I take while she pulled up a kid’s chair from the kid’s activity table.  Good thing Rach is little!

While discussing how this was going to be where we waited for hours, we were called back to see a doctor.  He had me repeat my symptoms then gave me a short neurological exam.  I was intrigued to be the one doing the exam since I am always the one watching Robert going through the exercises.  He ordered an EKG, lab work and a CT scan. 

Oh, this must be where we will have to wait for a while.

Nope.  A nurse immediately came in to conduct the EKG; another nurse followed and drew my blood who then took me straight to radiology. 

The longest wait was after all the tests and that was only for an hour.  We saw the same doctor who told me everything came back normal.  Phew!  The thyroid test was the only one that hadn’t come back yet so I thought that might be the problem.  I was advised to follow up with my regular doctor in a few days.

Rach and I thanked the doctor, paid and made our way home.  We were shocked we were in the ER for a total of two hours!  It was the shortest ER visit I have ever experienced (whether as the patient, caregiver or concerned family member)! 

Since that visit, I have continued to experience the same symptoms so I visited my General Practitioner who ordered an MRI and put me on a low-carb diet.  He also started me on low dose aspirin and wants me on a high cholesterol drug (which I am resisting but he made me shake on it. I suppose a deal’s a deal.).  I only have borderline high cholesterol but he wants to cover all his bases. 

I started the low carb diet which is making me very cranky.  I mean, seriously!  Who can live without chocolate, cookies, cake, muffins and iced chais?   Oh, and caffeine.  I was off caffeine for a long time but started up again during all the hospital stays.  I thought that might be the cause of all this too. 

The MRI is done and now I wait for my appointment with a neurologist to get the results. 

I still can’t believe I am the patient now, navigating this healthcare maze.  It feels like I am being sucked into a system that revolves around appointments, tests, waiting, medications and more appointments.  And I can’t even do it with my go-to comfort food or caffeine! 

It has been a stressful few months so I am actually hoping that stress or caffeine is causing these symptoms.  I still can’t believe I am now the patient.

Yep. Me.

Sunday, March 18, 2018

Coming Up For Air

Well, not really.  That’s actually wishful thinking on my part but I had this title in my mind for a month when I really thought things were settling down.   

Ironically, I started writing about Robert when I began caring for him but stopped (no – let’s say paused) because I was caring for Robert.  My original intent was to keep family and friends up to date and then I realized there was a lot of caregiving information to share as well as people who followed along after falling in love with Robert. 

And now I am neglecting this space!
Robert and Carol - before getting sick

Please don’t take it personally.

Let’s catch up!

Carol (grandma, great-grandma, #1 mother-in-law and most stubborn broad in the universe) was hospitalized in November and came to temporarily live with us while she recovered. She has a variety of health issues and it is best she stays with us. I think she should stay for good but she’s stubborn (as I mentioned) and refuses to think of the arrangement as permanent.  Fine.  We’ll be on a week to week trial basis if that makes her feel better. 

Richard (husband, co-caregiver, Mr. Macgyver, chronic pain sufferer who doesn’t let it get him down and #1 brother-in-law) has been dealing with a non-healing, expanding wound on his lower leg. The doctors have sent him to wound therapy specialists, tried all kinds of wraps, antibiotics (because of recurring infections) – even maggot therapy!  (That was as disgusting yet as fascinating as it sounds.) 

Richard with his good luck angel from
our friend, Pegi
After 14 months of this wound continuing to grow, they finally suggested a skin graft.  We were very hopeful Richard’s leg would finally heal and his pain would go away.  Make no mistake: this wound was extremely painful. He usually had to clean it twice a day which meant scrubbing it (yikes!).  There was a great deal of screaming (from him) and a lot of hoping the neighbors didn’t call the police on us (from me). Surgery would be a welcome relief for everyone!

Surgery was a week and a half before Christmas but he was out and home before Christmas and our hopes were high for a successful graft.

Robert (most excellent brother, word search king and Family Feud fanatic) woke up with a fever and cough on Christmas.  We had a house full of family over to celebrate so loaded him up with his fever reducer and antibiotics that we keep on hand for just such occasions.  By the end of the day, Robert could not even stand.  It took both Other Brother and I to take him to the bathroom and keep his legs under him so I could change his brief. We got him to bed and hoped the antibiotics would kick in by morning. 

Yeah, that didn’t happen.  (This isn’t a sitcom, after all.)

Richard had a surgery follow-up appointment the next day so his brother, Mark, and Carol stayed with Robert while I took Richard to the doctor.  Robert was safe in bed but still running a fever. 

The leg was looking good!  The doctor was very pleased and thought the graft had taken “98%”!  Woohoo!  We were ecstatic. 

As we waited for a prescription, Mark called to tell us Robert was burning up.  

Oh, crap.  So much for the antibiotics.  I had Mark give Robert more Tylenol and we hurried home. 

By the time we got home, Robert was not breathing well so we had to call the paramedics.  I try to avoid hospital stays but this was unavoidable.  Thank goodness we did send him to the hospital because, as it turned out, he had the flu and pneumonia along with a strange skin bacteria that caused sepsis!

I couldn’t believe how quickly Robert went downhill.  The hospital was the best place for him for now. 

The last week of December passed in a blur but, as it happens, my birthday is that week!  Richard and Rachel (fabulous daughter, animal lover and person who can make me double over with laughter) made my birthday extra special. After visiting Robert in the morning and talking to the doctors, we had breakfast at one of my favorite restaurants. Carol and my BFF came to make the breakfast even more special. Afterwards, Rach took me for a surprise spa pampering session which was just what I needed. 


Within a few days it was New Year’s Eve!  Robert continued to recover in the hospital with IV antibiotics, Richard’s leg was almost like new and none of us had caught the flu from Robert.  Carol was having issues with her blood pressure dipping too low and was very tired but the flu seemed to have bypassed all of us.


The three of us had a simple dinner and while I was doing dishes in the kitchen and Richard was stretching his back in the living room, we heard Carol coughing in the dining room.  Then a loud thud. 

It took us a second to rush in to her (she drops things all the time and gets irritated if we immediately come running.  Remember? Stubborn!). 

I got to her first and she was out cold. And bleeding from the head.  I yelled for Richard to call 911 while I shook Carol to wake up – all the while thinking she had a heart attack and had died.

It took a minute but she woke up and we did what we could to figure out where the bleeding was coming from (her head? her nose?) and stop it.  Paramedics came and Carol was alert and coherent.  It didn’t appear to be a stroke but was probably from the darn low blood pressure.  She passed out and hit the corner of the wall which caused a gash or two.  Since she is on blood thinners, there was a lot of blood. 

Off she went in the ambulance with Richard following close behind.  I stayed home to clean up what looked like a crime scene. 

Did I mention all the blood?

Happy New Year. 

January was spent shuttling between hospitals (you didn’t think Robert and Carol could be in the same hospital, right? That’d be too easy!  At least the hospitals were just a few miles apart though.)  Carol was released to a care facility to get physical therapy where she promptly got the flu. 

Back to the hospital for Carol. 

Robert enjoying a field trip to the hospital cafeteria
Robert had to have long-term antibiotics so had a picc line installed in his neck since his arm veins were shot.  He went to the physical therapy rehab floor of the hospital and eventually came home.  Carol soon came home too. 

Have I lost you, yet?  Let me recap: of the four people living in our house, three were hospitalized within three weeks of each other. 

(This blog could be super short if I just stayed with the recaps.)

Somewhere in there, I got sick too (but not get-to-a-hospital sick), orchestrated an office expansion/move for work and we converted Robert and Carol’s bathroom tub to a walk-in shower (thanks to Matt, #1 son-in-law). 

I was hoping for some downtime after the office move and all the hospitalizations. Who wouldn’t!

Richard’s leg still had a spot about the size of a quarter that wouldn’t heal so that became a bit worrisome. Carol’s cough continued while she also still declared she would be returning to her own home very “soon.”  Robert again became sick with a high fever and ended up in the ER.  This time it was a respiratory virus so it had to run its course.  It dramatically affected his breathing, though, and he had to be on continuous oxygen, even after returning home. 

It is the middle of March and I am sitting in the office I now share with Richard so Carol can have her own room (temporarily, of course).  Richard has a second skin graft scheduled for later this month but it is outpatient surgery and not a week long hospital stay.  Carol has her cough again/still and has been sleeping a great deal but at least her blood pressure is normal.  Robert still has a bunch of congestion but we are keeping up with his pulmonary health exercises and his vitals are fine. 

I think this is the moment I can come up for air. 

It is just a moment but I will take what I can get. 

Richard and I taking a breather

Sunday, November 12, 2017

Epilepsy Awareness Day at Disneyland

I am already thinking about Epilepsy Awareness Day at Disneyland 2018.  That’s what this event does to you – it inspires, educates, supports and leaves you feeling all gooey inside!

And that’s not just from the Mickey Mouse Rice Krispy chocolatey goodness treat that I had to have on Day 1.

This was the fourth year Richard and I took Robert to EADDL and the event gets better each year. Friends and family attend with us which makes my heart oh so happy! We meet new people who are affected by epilepsy in some way.  Families travel from England, Australia, Florida – you name it and I’ll bet that state or country was represented. (If it wasn’t this year, it most likely will be in the future.)

I know it is not always easy for families to travel to such an event but there was not one person complaining. It is not easy to travel with someone who is disabled and may need to go through an extra security screening at the airport. Or someone who might have a seizure (or be worried about having one) on the plane or at the event. Or someone who needs to organize a week’s worth of medication.

I worry that I won’t bring enough briefs or bed pads for Robert.  I worry that all the excitement will cause him to have seizure clusters (the last few years the event did cause seizure clusters but this year he only had a few sporadic, minor seizures).  I worry that it will rain (and we all know Robert melts in the rain). 

I worry that I am not getting the absolute best deal on the flight or the hotel. (I practically have a panic attack when making travel reservations because I am so fearful I am going to pay more than I should!)

My worries do not stop me from going but they do prod me to be very, very organized and prepared for any (and I mean any) contingency. 

What if Robert ends up in the hospital and we have to stay a few extra days? No problem: I bring a few extra days’ of medications (and have the nearest pharmacy and hospital listed on my itinerary).  What if Robert leaks through his brief at night? No problem: I bring enough pads to spread under and on top of him (thankfully, he’s a good sport about it).  What if pneumonia strikes again? No problem: I packed his at-home supply of antibiotics and his inhaler (and have his pulmonologist on my phone’s “favorites” list).

That’s what these families do: prepare, prepare and prepare and then take a leap of faith it will all work out.

And it does.

These families inspire me so much! I met many moms and dads with young kids with epilepsy; a grandmother traveling with her grandkids who have epilepsy; a single mom with her young adult son who has epilepsy; parents with adult children with epilepsy; friends attending with a friend who has epilepsy. 

We get to meet other families who have taken this leap of faith to attend and it leaves such a smile on our hearts that we cannot wait until next year.

I even met one young lady who was at California Adventure by herself who had epilepsy. She hadn’t heard about Epilepsy Awareness Day at Disneyland but tapped me on the arm, pointing at my t-shirt and said, “I should be a part of your group. I have . . .”  Epilepsy?  “Yes! I have epilepsy too.”

We stopped to talk with her for a few minutes and she said she had been seizure free since 7th grade and was now in college. She was delightful and sweet and I told her about the event and suggested she attend next year. I introduced her to Robert and she told me about the medication she was on that allowed her to remain seizure-free. She suggested I talk to Robert’s doctor about it and I thanked her for the information.

If we hadn’t been wearing our Epilepsy Awareness Day shirts she may never have known how many people were just like her.  Of course, I worried about her being at the park alone because she had an innocence about her that I was afraid people may take advantage of.

I recognized that innocence because Robert has it too.

Our encounter was brief but she left an impression. 

That’s what this event does too.

This event brings people together and gets rid of the stigma that epilepsy still has associated with it.

So dust off your worries, start your planning and preparing and join us next year at the annual Epilepsy Awareness Day at Disneyland and Educational Expo. 

Mark your calendars for November 5, 6 and 7, 2018!!

Hope to see you there!

I better start my search for the best travel deals – it’s never too early!