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. 

“You?” 

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. 

“You?!”

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.

Passing Time in the ER

Robert came into the hospital last Tuesday.

I am pretty sure today is Monday and, yep, we’re still here.

Rocky Road makes the wait much easier

Anyone who has spent any time at all in the hospital or visiting anyone in the hospital or knows anything about hospitals knows there is one constant: waiting. 

We are waiting for an MRI with sedation (because Robert has back pain when he is lying flat so can’t stay still during the test).

We are waiting to find out what is causing his rapid decline (why he can’t walk; why he is sleeping all the time; why he can barely circle his words on his Word Search puzzles).

We are waiting for doctors and blood work results and theories.

We are waiting for physical therapists, occupational therapists, answers and a plan.

On Tuesday we waited for eight hours in the Emergency Room before being admitted and getting wheeled to his current room. We have had longer waits in the Emergency Room so eight hours seems long but not unheard of. 

What kind of crazy world do we live in that an eight hour stay in the Emergency Room doesn’t seem too bad? 

I think the problem was we came into the ER on a Saturday night.  Oh, wait, no – we came in on a Tuesday afternoon.  A Tuesday afternoon and Robert was first put in a hallway and eventually a room. 

Where we waited and the doctors ignored my insistence they call the neurology team which is what his neurologist wanted.  She specifically told me the team would be notified before I even brought him to the ER!  Call them, please! 

It took four hours for the doctors to finally decide to call the neurology team and this was after me asking them to do so; telling them to call them; calling them myself and finally unloading on a medical student (who had repeatedly told me she was a fourth year med student).

Congratulations!  You’re in your fourth year of medical school! Let me just ask you to please, please listen to the caregivers when they give you information.  Caregivers know their caree.  Caregivers will give you all sorts of information about what is baseline for this person you’ve never seen before.  Since you’re a student, it is a good thing to learn early on that caregivers can be a huge help and resource to you!  Now, Please. Call. Neurology.

I felt better after giving my little speech.

And neurology showed up soon after.

While Robert and I waited in the ER, Richard arrived with new energy and a smile.

What a welcome sight!

Richard went to get us food which turned out to be the best grilled cheese sandwich I’ve ever had.  (Although it could have been the starvation influencing my judgment.)  Regardless, I was beyond grateful for Richard getting us the food so I wouldn’t miss the opportunity to talk to the doctors.

Robert tried to pass the time working on his puzzle book but had trouble circling the words.  He slept during part of the wait and I stepped into various hallways on a search for internet access.  I finally was able to text by creating the text then holding my phone up in the air in a particular hallway and sending.

Whatever works.

Waiting allows me time to find these creative solutions.

Waiting also gave me time to talk to Robert to ask him silly questions.  He had a purple band on his wrist which the hospital had put on him upon arrival. 

I like the color purple, Robert!

“I do too.” 

What is your favorite color?

“Blue. I like yellow too. And purple.”

I knew he loved blue but didn’t realize he liked yellow and purple.

What is your favorite food?  (Of course, I expected to hear “cheeseburger” or “combination pizza.”)

“Steak and Lobster.”

Wow! Someone likes to live high on the hog!

What is your favorite drink?  (This is an easy one – he’ll say chocolate shake for sure!)

“Sprite.”

What?  Anything else?

“7-Up.”

Well, okay, but I still think chocolate shake is his favorite drink!

What is your favorite dessert?  (Everyone knows this answer!)

“Chocolate candy.”

Oh goodness.  Robert must be really sick if he doesn’t even rank Rocky Road ice cream as his favorite dessert!

What about ice cream?

“I love ice cream.”

What kind?

“Chocolate.”

The long wait is obviously turning his brain to mush. 

What about Rocky Road?

Robert's eyes lit up. 

“I LOVE Rocky Road ice cream.  It is deeee-LISH-us.”

We eventually made it out of the ER and into a room.

Where we wait for an MRI with sedation and answers and theories and plans. 

And where I sneak in a little bit of Rocky Road to help with the wait.  

Another Day, Another Visit to the ER

I am not making this up.

Soap opera writers are starting to call me for story ideas. I expect my evil, identical twin to show up any minute now. (Okay, that part I'm making up.)

Many thanks to Richard's brother, Jim, who spent his
afternoon in the ER with Richard

Richard normally has swelling in his lower legs. He wears compression socks to manage it and recently ordered one of those nifty compressor machines that hospitals use because we noticed his legs were getting a bit more swollen than usual.

And who doesn’t want more medical equipment in their house?

Before getting this handy new device, Richard’s legs swelled up overnight and turned a horrible color of reddish purple. Not a bad color for the walls but on legs, not so much.

Oh, then he had excruciating pain in his upper thigh.

Here’s a tip: Do not Google these symptoms. Especially don’t click on “images.”

I did and Richard’s legs (and worse) were staring at me from my screen. 

Coincidentally, he had a follow-up with his pain management doctor this morning who suggested he immediately see his primary doctor for an ultrasound.  The pain management doctor called the primary doctor who, once Richard was back home, called Richard to tell him to go to the Emergency Room which is actually five minutes from the pain management doctor. Good thing Richard had driven 20 minutes back to the house. . . 

(I don’t understand why there wasn’t a directive by the pain management doctor to go directly to the emergency room but I’m tired of trying to figure out why he does the things he does.)

The suspicion was Deep Vein Thrombosis which could have been a result of his recent hospitalization. The doctors were all almost certain he had a blood clot so he had blood work taken, x-rays done and, finally, an ultrasound.

For those counting: Richard and Robert have both been in the ICU this month and Richard can now add another visit to the ER.

Three trips and/or stays in the hospital. This month.

This equals about 3,467, 989 trips from home to work to hospitals back to home to pick up Robert and back to the hospital. 

I know there are people who have it much worse than we do and I am not trying to be ungrateful, but I can’t help but think:

ARE YOU FREAKING KIDDING ME, RIGHT NOW?

Thankfully, the ultrasound did not show any signs of a blood clot.  Richard had his water pills increased and was told he had severe edema and to follow up with his primary care physician. 

Richard is home now and was well enough to play with the dogs and assist with Robert.

Which is a good thing because I am busy preparing for the exorcism . . . 

For Caregivers: Tips for That 911 Call

It is no surprise to anyone that caregivers have to stay on their toes.  Keeping the calendar up to date and keeping on a schedule is a fantastic plan.  I schedule in extra time before any appointment to allow for anything unexpected.   This extra cushion usually allows enough time for a complete change of clothes and a seizure (never knowing when either will strike).   Throw in an unexpected fever or problem finding parking (or both) and, well, my carefully laid out schedule becomes wishful thinking.  Thankfully, this kind of perfect storm is rare and we make it to most appointments on time.

Having to make a call to 911 is taking the unexpected to a whole different level.

Planning for emergencies and the unexpected mean we caregivers always have to be ready for them.  We have to be on our toes.  With Robert, this could mean a change of clothes due to a failure with his protective brief or it could mean he has a seizure that lasts for three minutes with several minutes of confusion and fatigue afterwards. 

It could also mean a trip to the Emergency Room (although, thankfully, this is rare for him).

I was grateful to have been ready when we woke up not too long ago and realized Robert needed to go to the hospital.  Robert had woken up with a fever and had trouble holding his glass of water to take his medication.   I gave him something for the fever and he went back to sleep for a bit.  When he woke up, he had trouble sitting up on his own and was still running a fever. 

My husband and I could have gotten him to the hospital on our own but it would have been difficult.  We made the decision to call 911 and I was happy we did, considering his blood pressure was shockingly low and he was eventually diagnosed with sepsis and pneumonia.  After a week in the hospital and two different kinds of IV antibiotics, he is out of the hospital and getting back to his old self.  

Robert doesn’t go to the hospital very often (knock on wood!) but it is helpful to be prepared in case he ever does.  Because it’s difficult to think straight when a loved one is so sick that emergency personnel need to be called, here are a few tips to help prepare for the unexpected:

1.        Keep a bag packed for your caree so you can grab it on your way out the door to the hospital (or keep it in your car).  I keep a bag packed for Robert with a change of clothes, extra protective briefs, wipes and medical gloves.  This bag has come in handy when we are out and about and Robert has a bathroom accident.  What I realized I forgot to include in case of a trip to the hospital was basic toiletries.  Those will be added to the emergency bag.   I grabbed Robert’s word search puzzle, pens and glasses on the way out the door as well but it would have been helpful to have an extra set of these in the bag too. Everyone needs a bit of entertainment when they’re feeling better! (Plus, I never know when Robert will run out of pens!).

2.       Create a one page medicine list/contact sheet.  I have all of Robert’s medical information typed on one page including his medical record numbers, insurance information, address, emergency contacts, contacts at both the care facility and Day Program as well as a list of medications (and the medication schedule).  Some people may not be comfortable including the social security number or insurance information but I wanted a document with all of his pertinent information readily available for me.  If Robert had assets or a credit rating to protect, I wouldn’t include his birthdate or social security information either.   Print several copies and keep the document up to date.  I was grateful I had recently updated his list and had copies on hand to give to the Fire Department, the paramedics and the ER doctor.  They all asked the same questions about medications and all were grateful to have one sheet of paper with all of the information.  It also allowed me the ability to concentrate on telling them what was wrong with Robert instead of what medication he takes or when he was born and gave me a list to consult when reviewing his medications with the hospital staff.

3.       When talking with the 911 dispatcher, remain calm (it’s a stressful situation but relaying information in a panicked state just compounds the situation).  Give the operator information about what is happening and any chronic condition of your loved one.  I told the operator Robert has epilepsy but had to correct her when she assumed he had a seizure and that’s why I was calling.  At the end of our call, she read seizure precautions to me which I listened to and thanked her for the information.  I then politely asked her to add information that people cannot swallow their tongue during a seizure so to advise them not to place anything in their mouth.  (My motto: educate and advocate!).  

4.       Keep a bag packed for you, too.   I regretted not grabbing a book and my phone charger before leaving the house on the way to the hospital.  There were plenty of times a good book would have been a welcome distraction and by the time I was leaving the hospital that first night, my phone was in the red zone.

In the next post, we’ll talk about how to be an advocate while your loved one is in the hospital.  Please share in the comment section what you do to prepare for the unexpected or that 911 call.