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. 

Bliss!

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.

Phew! 

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

Epilepsy Awareness Month Day 3: The Decision to Call 911

Robert’s seizures do not scare me.  He has had seizures for as long as I remember having my second little brother.  The only reason he needed to be taken to the hospital due to a seizure was because of what happened during the seizure: falls, concussions, broken jaw, a burned arm, near drowning.

Of course, Robert told everyone he was
"excellent."

I had to pick him up from school a few times when he had a seizure (resulting in a loss of bladder control) and mom was at work. I picked him up and drove him home.

Let me rephrase: Robert’s “normal” seizures do not scare me. 

It’s the out of the ordinary ones who give me a run for my money. 

The seizures that last three or four minutes – watching the clock in case he doesn’t come out of it at the five minute mark.

Those scare me.

A cluster of seizures with falls involved.  He had numerous seizures last February – complete with falls and his legs bent every which way. I thought for sure he was going to break something during that turbulent month.

That scared me.

A cluster of seizures that do not stop.  Robert typically has cluster seizures involving five or six seizures but I am able to give him 1 mg of Ativan between them and they stop. 

Sunday they did not stop.  Twelve seizures before I was even able to safely give him an Ativan. Then several more while I waited for it to do its work.  When the seizures didn’t slow, I gave him another Ativan.

That scared me too. 

Richard and I waited.  I called the on-call neurologist (because, of course, this couldn’t happen during office hours)!  He advised I take Robert to the emergency room. 

I didn’t want to.  I really don’t like taking Robert to the hospital because I know the decline that happens afterwards.  I know what a mess the ER is (great staff but it is a trauma hospital so it is very chaotic).

Here’s my confession of the day:

I really didn’t want to call the paramedics this time because we have a trip to Disneyland planned (for Epilepsy Awareness Day at Disneyland) and our flight leaves on Tuesday.

I am determined to take Robert to Disneyland, gosh darn it! I am willing the Universe to make this happen!  Robert is very excited about the trip (as are Richard and I) and I am not going to let anything stand in the way of going. 

That might sound irresponsible but I know how hospital visits go.  I did not want Robert admitted and didn’t want him to have any sort of decline/

By the time I called the paramedics, I had lost track of the number of seizures but estimated approximately 25 – 30 in a two hour span. 

That’s as many as he has in a month.

So, yes, I called the paramedics. 

BUT, UNIVERSE, WE ARE STILL GOING TO DISNEYLAND!!

Robert had another seizure while the paramedics were at our house and one at the hospital that I witnessed, once I was with him again.

That was at 1:00 p.m.  Robert finally saw a doctor and had blood drawn and a chest x-ray to check for an infection.  Nothing came back and I insisted it was okay to discharge us.  I promised to contact his neurologist the next day. 

Robert was discharged and I put him into the car around 8:00 p.m.

He proceeded to have three seizures on the way home and two once home.  I gave him another Ativan, got him ready for bed and watched him on the video monitor for quite a while. 

The neurologist’s office opens in a couple of hours and I will call them to see what they say about all of this. 

For today’s Epilepsy Awareness Month video, I am posting the video I took of Robert while he was having several of his seizures.  I actually was trying to capture one for the doctors but since he continued to have a cluster of them, there are several on the video.

I know on Day 1 I promised short videos.  This one is long and I haven’t had a chance to edit it.  Skip through anything that doesn’t interest you. 

(And, yes, I will post video of us in Disneyland – because WE ARE GOING!)

Goodbye September – It’s Been . . . Memorable

September has been quite a month (although, it is not at all unusual for caregivers to have weeks/months/years like this – and worse - unfortunately).

Enjoying a "normal" day

Let’s recap:

September 1:  Richard, Robert and I decide to go to a movie! The tickets were cheap, the popcorn was pretty tasty and the movie wasn’t bad at all.  What a fun way to start the month!

September 3, 7:00 a.m.:  Richard opens the front door for his routine intrathecal pain pump refill appointment which happens every 45 – 60 days. The puppy escapes and Richard and I chase him back toward the house.

September 3, 7:05 a.m.: The puppy escapes again just before I am able to get him back in the house. (I note that Taz is aptly named.) Finally, we are able to get him back in the house. (For real this time). Richard leaves for his appointment.

September 3, 7:10 a.m.:  Robert and I finish getting ready for work (me); and Day Program (Robert). We wait for Robert’s van to pick him up.

September 3, 7:45 a.m.: Robert leaves for Day Program and I leave for work. The puppy does not escape.

September 3, 2:30 p.m.: I leave work to go to a doctor appointment because I have been feeling dizzy. The doctor thinks it’s vertigo but wants to do an EKG to be sure. 

September 3, 3:15 p.m.:  While waiting for the EKG person, Richard calls me. He is groggy, slurring his words and tells me he’s in the hospital. He cannot give me any other information.

September 3, 3:16 p.m.: I leave the doctor’s office, briefly telling a random person I have to leave (I assume she worked there).  I realize Robert is going to be dropped off after Day Program in about ten minutes and Richard will not be there.  I call the transport company as I am racing home to explain why I might be late.  My phone is about to die so I cannot call the hospital until I get home.

September 3, 3:35 p.m.:  I call the hospital and am told Richard is in the ICU – my heart drops. I talk to a doctor while getting Robert from the van to the house. I find out he was inadvertently overdosed with 40 cc of Fentanyl during the “routine” pump refill.

Oh and no one from the pain clinic, the ER or the ICU called to tell me.

September 3, 4:00 p.m.:  I explain the situation to Robert and tell him we have to go to the hospital. He has to use the bathroom but finishes in record time and we rush off to the hospital.

September 3, 4:30 p.m.: Richard is lying in the hospital bed, completely passed out. Robert quietly sits in a wheelchair working on his puzzle book while I get an update from the nurse. Richard’s mom and one of his brothers come to the hospital; our daughters come to the hospital; our son is calling from North Dakota (acting like a tough guy but obviously scared). Richard’s other brother (who lives a couple of hours away) calls several times then makes the decision to come up.

Yeah, we’re worried.

September 4, morning:  Richard is still in the ICU on an IV of Narcan which is the antidote for this drug overdose. He is able to talk to us but is completely miserable and in pain (his head hurts and his back hurts. Oh right - there’s no medication in his pump since it all went into his abdomen).

September 4, afternoon:  The doctor decides to take Richard completely off the Narcan. Within less than an hour, he is unresponsive and his eyes are rolling in the back of his head. His mom and I (and the nurse) all try to wake him up.  The doctor rushes in and immediately starts the Narcan again. I’ve never seen Richard’s mom so scared.

September 5: Richard is slowly weaned off of the Narcan.  He is in extreme pain and horrible discomfort but there is hope he will get moved to a regular room soon.

September 5, 7:00 p.m.:  The girls and I and Robert leave the hospital to get some dinner. I park in the handicap space but forget to hang my placard and, yep, have a $450 ticket waiting for me when we return to the car.

September 5, 11:00 p.m.: I’ve long since left the hospital to get Robert home and ready for bed. Richard is moved to a regular room. I’m still cursing the dang ticket but am too tired to go online to appeal.

September 6: Richard is able to be discharged! His pain is still awful but the withdrawal symptoms have subsided.

Oh, it’s also Robert’s birthday and our 16^th wedding anniversary. Before going to the hospital, I took a birthday cake to Day Program for Robert so he would have a celebration with his friends. Happy birthday, Robert! Happy Anniversary, Richard!

September 7: I appeal the parking ticket and have charge reduced to $27.95 for “administrative” fees.  Otherwise known as “we want you to remember not to be an idiot in the future” fee. 

September 11: Richard has an MRI dye study done on the pump to be sure it is working properly. He also has the pump refilled to alleviate his pain (by the head doctor). This time, the medication goes in the pump like it’s supposed to.

September 12: It’s Richard’s and Other Brother’s birthday! Richard and I go out to dinner with one daughter (Rachel) and Robert.  Before leaving for dinner, Robert has an unusually long seizure with several minutes of confusion. Richard gets sopapilla for dessert and is a happy guy!  (Robert loves it too.) Happy birthday, Richard and Other Brother!

September 13, morning: Robert has had nasal congestion and a cough for about a week.  I take him to a doctor appointment and she starts him on antibiotics. His chest x-ray is clear.

September 13, (throughout the night): Robert has gone downhill all day so by bedtime, I wake every two hours to take his vitals.

September 14, morning:  We call the paramedics to get Robert to the hospital.  His behavior and symptoms are the same as the last two times he was hospitalized for pneumonia and sepsis.

September 14, later that morning: Robert is diagnosed with pneumonia and sepsis, surprising absolutely no one.

September 14, noon: Robert is transported to a regular room where he goes further downhill.  He is transferred to the MICU.

I let a morbid thought in: can he survive a third bout of pneumonia and sepsis within 16 months?

September 16: Robert is doing well so is transferred to a regular room. I ban all future morbid thoughts – Robert is a walking miracle.

September 17, 3:00 p.m.: I stop at the grocery store after working part of a day and before going to the hospital. I slip and fall and land on all fours (knees and hands).  My ego suffers the most damage.

September 18:  Today is daughter Caty’s birthday! Happy birthday, Caty!

September 20, 5:00 p.m.:  Robert is discharged from the hospital!

September 21: It has been 14 years since my mom died. I think about her frequently throughout the day.  (Truth be told: every day.)

September 26:  Richard’s leg is swollen much more than usual and extremely red.  He is complaining about his vein hurting in his upper thigh. His doctor sends him to the ER where everyone thinks he has Deep Vein Thrombosis.  The ultrasound does not confirm this and he is sent home with instructions to follow up with his PCP and a whole lot of Lasix.

September 29: The extended family celebrates all the September birthdays at our house. There is too much food, lots of noise and even more laughter. Things seem . . . back to normal (if you don’t count Robert’s lingering cough and Richard’s legs still looking like tree trunks).

It’s “normal” enough so I will take it.

September 30, 11:00 p.m.:  I wake up to Richard in the bathroom trying to stop one of his legs from gushing blood. He had scratched his leg and it spewed blood like in a bad horror movie. We finally were able to get the leg wrapped with several bandages and elevate his leg. We decide a trip to the emergency room is not needed but will call the doctor first thing in the morning.

October 1: Hello, October! I don’t know what to expect but after our September, know that we will get through whatever is thrown at us.  

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 . . . 

The Importance of a Hospital Visit

Visiting a loved one or friend in the hospital can serve a few purposes. For the caregiver, it can be a way to advocate. It can also be a social visit which can lift the spirits of the patient or the caregiver staying with the patient.

My time in the hospital with Robert wasn’t so much of a visit with him as it was me being there to advocate on his behalf. (Since Robert was sick, he was sleeping most of the time and probably didn’t even realize I was there). 

For me, it was important to be there at every shift change so I knew the doctors and nurses taking care of Robert. I made sure they understood the importance of not changing the time of his seizure medication schedule because of the increased risk of seizures and made sure there weren’t any surprises such as taking him off of his seizure medication (which the ER doctors wanted to do before I insisted they speak to his neurologist first). 

If I couldn’t be there because I had to run into work for a bit, my husband took over for me.

Aside from confirming the medication schedule with each shift until the nurses and I knew each other, I also kept track of the vitals whenever they were taken which no one seemed to mind. In fact, on Day 3 of Robert’s stay, the doctors were talking about releasing him since he hadn’t been running a fever. They were very happy Robert was doing so well but my notes said he was running a fever the previous evening.  I hated to burst their bubble but, after reviewing my notes, they agreed to keep him longer. (The nurse had an extremely busy shift the night before and had neglected to note a fever in Robert’s chart).

I also had to be there because Robert is a terrible self-reporter. He says he’s doing “fine” or “excellent” even if he is unable to sit up unassisted (which isn’t normal) or is running a fever or has just fallen from a seizure.

He’s either extremely optimistic or a master at denial.  (Maybe a little of both.)

He is also cognitively slow with a memory impairment so it is unrealistic to think he can fend for himself when doctors are asking questions or giving him information. As his caregiver, I can also recognize what is “normal” for him and what isn’t and convey that information to the staff. Relying on Robert to give the doctors and nurses information about his condition is irresponsible and would be detrimental to his health.

Many caregivers are in the same situation when their caree is hospitalized because their loved one is too sick to be able to fend for themselves. However, it’s not always possible to be at the hospital all day long (people work, have children to tend to, have other caregiving responsibilities or their own health concerns).

One solution may be to ask a family member or friends to visit at a time when you can’t be there.  The suggestion may even be welcomed – people do love to help but often don’t know how! It can be difficult to ask for help but it can cut down on miscommunication if someone is with the patient when vitals are taken or when the doctors do their rounds.

Another way to help is to think of the visit to the hospital as a visit to the caregiver. Most likely, they are stressed out, in need of a sounding board or some company. I am extremely grateful to my husband and daughter who spent many hours with me in the emergency room and at the hospital with Robert. We got to know the best foods to get from the cafeteria if we were in a rush and were able to sample just about every dessert they had available (you don’t think I’d let a hospital stay keep me from chocolate, do you?).

If I had any doubt about whether or not spending so much time at the hospital was a good idea, his doctor told me on the day of discharge how much he appreciated my involvement and my advocacy for Robert (this is the same doctor who I had disagreed with earlier in the week when he was throwing out theories about Robert’s cognitive decline).    

Hopefully, Robert will stay out of the hospital for a while but if he does have to go in again, you can find me either in his room talking to doctors and nurses, taking notes or sneaking off to grab a surprisingly delicious brownie.

Since there isn't a "one size fits all" formula for hospital visits, I'd like to know what your view is of hospital visits.  If you’ve been in the hospital, do you want people there all the time or do you prefer some peace and quiet? If you’re a caregiver, do you want someone to give you a break or to take shifts in talking to the doctors?

Or do you just visit for the brownies?

Five Ways to be an Advocate When Caregiving

Caregiving. Family. Advocacy.

When I created “Robert’s Sister” I added these words to sum up what I was all about.  (Please understand that for someone who tends to ramble, boiling down my purpose into three words was quite an exceptional feat).

To me, advocacy goes hand in hand with caregiving (which is just fine with this former Greenpeace rabble rouser).  

When Robert was in the hospital with pneumonia and sepsis, my advocacy tendencies were on high alert.    It started with the 911 call and taking the opportunity to ask the dispatcher to add a bit more information to the script she read about seizures.  

We are given plenty of opportunities to advocate when our caree is in the hospital, visiting the doctor or even while living in a care facility.  For me, advocacy doesn’t mean being a pain (or worse) but I will stand my ground if necessary.  Since I’m not a huge fan of confrontation, this can become a bit uncomfortable but it is definitely for the right cause – my loved one’s health.

There are several ways to advocate for your caree but these are my favorites:

1.       Educate Yourself.  Learn as much as possible about your caree’s condition so you feel confident enough to educate others and you are able to better advocate on your loved one’s behalf.  I love learning as much as possible about epilepsy, research, treatments and caregiving.  There’s always something to learn!

2.       Educate Others.  Robert has told me his purpose in life is to educate others about epilepsy. He lights up when people ask him about his seizures or epilepsy and will tell anyone who is interested, stories about his brain surgeries or seizures when he was younger.  When Robert meets a new doctor or nurse (and he met several while in the hospital), I briefly explain what his seizures are like because most people equate “seizure” with convulsions and I don’t want them to miss a seizure if they are looking for the wrong characteristic.  (Or miss an opportunity to catch him since he gets very still then will fall down if he’s standing).  It’s a great opportunity to let people know there are several different kinds of seizures. Sometimes people ask follow up questions which is a wonderful chance to educate about your cause, caree, condition (or all of the above).

3.       Take Notes (copious notes).  The notes I took while in the hospital actually prevented Robert from being discharged too early.  On the second or third night, the nurse had been inundated with patients and tasks and was unable to write her reports until the end of her shift. Because she had been overwhelmed, she neglected to accurately record Robert’s vitals.  I had diligently recorded his vitals each time they were taken and was able to show my notes to the doctors when they excitedly walked in talking about how Robert didn’t have a fever the previous night. They quickly stopped talking about discharge once they saw my notes.   

My husband takes this one step further.  He helps his mom with her numerous medical appointments and he has created a binder for her which includes all office visit summaries, lists of medications, contact information – anything that might be needed at the next visit or when seeing a different doctor. The binder has come in handy on numerous occasions when a physician treating one condition needed to know something about one of her other conditions.

4.       Communicate.  I made sure I was at the hospital for each shift change so I could meet the nurse who would be on staff.  After a few days, I finally figured out their schedules (boy do they work hard!).  I asked the doctor for clarification if I didn’t understand something he said. I asked what medication Robert was being given and went over Robert’s seizure medication orders with each shift.  They eventually got used to me being there constantly and no one had a problem with me asking questions.  In fact, the staff told me on more than one occasion they preferred more family involvement than less.  The last person who is in a position to communicate to the hospital staff is the patient who is sick, tired and medicated.  The patient needs an advocate to keep information flowing to and from the staff.

5.       Don’t be afraid to question.  Doctors are very smart.  They’ve been to a gazillion years of school even if they do look like they’re 20 years old. They have knowledge I only wish I had.  What I have for them is knowledge about my caree.  I know Robert’s baseline behavior – sleepy but not so sleepy he can’t keep his eyes open.  I know Robert will tell the doctor he is “doing excellent” when in fact he is running a fever.  I know Robert will wake up with a wet brief and soaking wet sheets. I also know the doctor is wrong when he tells me Robert has to go off all of his seizure medications because his Valproic Acid levels (liver enzymes) are high.  It’s situations like this when I can’t be afraid to tell the doctor that he is incorrect and he needs to check with Robert’s neurologist first (the neurologist is treating Robert for the high Valproic Acid levels and, it turns out, the test was run too close to the time he got his medications, falsely elevating the levels).

It can be difficult to tell a doctor “no” but it is essential to caregiving.  If something doesn’t seem right, at least ask questions. Find out why the doctor is making the decisions he or she is. Get a second opinion if necessary.

Just remember, no one knows your caree like you do and no one can advocate on their behalf like you can.

These are just a few ways to advocate for your caree.  I’d love to hear ways you have advocated for your caree.  Please share in the comment section and then get out there and advocate!

Who Knew Hospitals Had Roller Coasters?

California Adventure: California Screamin

Let’s get this out there: I do not like roller coasters.  I will go on them to push myself outside of my comfort zone but I am terrified during the ride.  Afterwards, I may say I was glad I pushed myself but can’t actually recall if I’ve said I’ve enjoyed the experience.  (My denial defense mechanism is working just fine!).  

During my 50^th birthday celebration at Disneyland and California Adventure, I went on “California Screamin.” 

I was so frightened I couldn’t talk once the ride was over.  I’m not kidding.  I couldn’t scream, couldn’t talk and could barely move to exit the coaster car. 

Give me some ice cream and let me sit down before I faint. 

This week has felt like a roller coaster: Sunday, Robert seemed to be doing better and everyone thought the antibiotics were doing their job.  Monday morning, one of the residents was visiting Robert and going through the usual questions and chest exam.  Robert was working on his word search puzzle while the doctor and I talked about how Robert seemed to be improving. 

Without moving his pen toward the paper, Robert asked me to help him write the number 10 next to a word (Robert likes to find the hidden words then count how many letters are in each word.) 

I was very confused because this is something Robert does several times a day.

You can write the number, I tell him.

Staring intently at the paper with pen in hand for several long moments, making no motion toward the paper, Robert says, “I’m trying to but it seems I can’t.” 

The bottom dropped out of my stomach.

No matter what I said to him to coax his hand to move the pen to paper, he couldn’t do it. 

From the shocked look on my face, I’m sure I didn’t need to tell the doctor that was not typical behavior.   Between this and the extreme sleepiness, it seemed there might be something besides the infection going on. The doctor assured me they would keep Robert in the hospital to figure out what was wrong. 

I’ve sort of lost track of days but since then, an EEG was done, another chest x-ray was taken, more blood was drawn and the neurology team was consulted.   There wasn’t a change in the EEG results from the last one taken about a year ago.  The blood cultures weren’t growing any bacteria and the chest x-ray showed about the same amount of fuzziness as the first one. 

Some good signs.

Finally, Robert was more like himself today.  He can’t move around as well as normal but he’s been lying in a hospital bed since Friday so his legs are very weak.  A physical therapist has walked with him for the last couple of days and I’m hopeful he’ll get back to his baseline soon. 

The doctors now think it just took a while for the antibiotics to fight the infection Robert had and that the infection had impacted his cognitive function since, after a couple of brain surgeries, medications and a lifetime of seizures he has very little “cognitive reserves” to deal with an infection. This does make sense to me and I know how Robert's cognitive and physical abilities have been compromised in the past due to an infection.

The great news is Robert may be released tomorrow.  My worry is the infection will return as soon as he finishes off the antibiotics.  I’ve already warned New Home they will have to be hyper-vigilant in order to monitor Robert for any signs of an infection returning.  I’m going to ask the doctor to write an order for them to check his blood pressure and temperature a few times each day for the next few weeks so we can quickly catch any signs of a return of the infection (because New Home, of course, has to have a doctor tell them to do these things).

I’m focusing on the good news and keeping my mind off of the roller coaster.  I’m ready to be done with this ride for a while and imagine Robert and my family is too. 

Maybe it's time for some ice cream and a little rest.