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.