Sunday, July 29, 2018

Video EEG: Process, Results and Decisions

A lot has happened since Robert’s video EEG in April and it all affects the direction we go with Robert’s treatment.  Caregivers make decisions every day about treatment and everything needs to be considered: how treatment will affect our loved one and their quality of life, the ability of the caregiver to manage the treatment and, of course, what our loved one wants or what we think he would want if he is not able to make his own decision.

A great deal of stress in caregiving comes from having to make these decisions about treatment and wondering if the decision is the right one to make for everyone involved.  These are not just decisions about what to eat for dinner or what to wear for the day (although, those add up too) but life and death, quality of life type decisions. 

There are other stressors while caregiving such as financial, time management, sleep deprivation (to name just a few) but making a decision for someone else’s treatment is a big one. 

We are making life and death, quality of life decisions all the time. 

Robert’s treatment has changed through the years but, since I took over his care ten years ago, it has only involved medication changes.  Those can be a bear!  Robert is on five different medications for seizure control and an additional ten for various other reasons (thyroid, Parkinsonism, GERD, allergies).  He is incredibly sensitive to medication changes so I am usually reluctant to try something new but if we do try something, we take it slow. 

I give the new medication some time to work but also to see if the side-effects subside or are something we can live with. 

And there are always side-effects.

Last summer Robert got a new neurologist.  She came from the UCLA Medical Center and is energetic, personable and had the goal of getting her patients to zero seizures. 

Zero seizures?  It never occurred to me that Robert could have zero seizures after having a lifetime of dozens a month.  After she recommended trying one new medication we dropped it as it seemed to be causing an increase in seizures!  (*insert buzzer sound here*)  Rejected!

That didn’t hinder Dr. K’s enthusiasm for finding a solution for Robert.  She told me how experienced she was with the NeuroPace and had high hopes that it could greatly reduce Robert’s seizures and even, eventually, allow us to reduce some of his seizure medications.  It sounded very promising so we decided to explore that option.

The first step was the Video EEG.  After getting the team together (because a VEEG requires a team) we were on our way!

I didn’t really know what to expect from the VEEG but did some research and prepared the best way I know: create to-do lists and a schedule! 

The VEEG usually lasts from Monday through Friday and requires 24 hour monitoring by a family member.  Robert gets hooked up to the EEG monitor and is on a video monitor but the caregivers are expected to press a button to flag when a seizure occurs. 

It is a huge commitment but we all knew how important it was to do this in order to give Robert a chance at fewer seizures. 

I explained what I knew about the process to Robert and told him Richard (brother-in-law), Rich (Other Brother) or I would be with him the whole time.  He’s usually a pretty good sport (unless he is on a new med) so he was game for the VEEG.  All he needs to be happy is his word search book, some television shows and good food.  I brought Robert’s word search, knew he would have a television and since Robert is a fan of hospital food we were all set.

Richard and I took Robert in on Monday and the leads were meticulously applied to Robert’s scalp.  I think they pretty much covered every inch of his head!  The smell of the glue they used was horrific but that dissipated after a while (or we just got used to it).  The tech was extremely patient and kind during the process and answered all the questions we had about the process. 

She explained the leads would stay on for a full five days and they could be reapplied if any come off during the week.  She hooked up a respiratory belt, EKG leads, pulse meter and a nasal cannula.  The nasal cannula and pulse meter can be unhooked when Robert needs to go to the restroom but the rest of it is attached to a very long cord which Robert will carry with him to the restroom. The only time Robert can get out of bed is when he is using the restroom. 

I think this limited mobility would drive most people crazy but Robert didn’t seem to mind.  Robert enjoys (a little too much) being waited on so this was certainly not an inconvenience to him. 

We met several members of the neurology team the first day and they ran a bunch of baseline tests (blood work to check medication levels, chest x-ray, neuro exam).  It was a flurry of activity the first day and they started lowering his seizure medications that first evening. 

By Tuesday morning, Richard noted some confusion when Robert woke up.  Robert thought he was in the commercials and called Richard “John.”  Most likely, this indicated a seizure while Robert had been sleeping. 

I took over in the afternoon (after a work meeting and my own ultrasound) and by evening Robert was shaky and his pulse was high.  This is an indicator that seizure activity is coming.  Rich took over Tuesday night and Robert stayed up until 11:00 working on his word search puzzle.  His schedule is always out of whack when he’s in the hospital.  Rich noted a seizure at 1:15 a.m. 

By Wednesday morning, the seizure meds had been stopped.  Robert ate some of his breakfast (scrambled eggs and biscuits & gravy) and worked on his word search puzzle. 

I also got the results of my carotid artery ultrasound and everything looked normal!  Woohoo! 

Robert gave up on eating the scrambled eggs which is unusual for him. 

By 9:20 that morning, the seizures were in full force. 

This was his typical cluster of seizures: his head moves to the far right and each one lasts 15 – 20 seconds.  He sometimes moves his head back and forth and gets what I call “seizure mouth” (his lips purse together and his face droops).  After several of these he had a couple of longer seizures (about a minute each) with moaning and moving of his right leg.  He was very disoriented. 

The doctors gave him some of his regular seizure medications to stop/slow the seizures but they were cautious about giving him too much.  They were hoping to do a SPECT scan on Thursday and they needed him to have a seizure during the test.  This test is basically a CT scan with radioactive dye injected at the first sign of a seizure so they can pinpoint exactly where the seizure is coming from. 

Robert continued to have seizures every 10 minutes or so.  The doctors decided to give him enough meds to stop the seizures regardless of the effect on the test scheduled for Thursday.  By this time, the goal was to stop the seizures. 

By 3:30 p.m., the seizures hadn’t stopped and he was wheezing, confused, shaky and pretty much out of it.  He was given Ativan as well as a loading dose of Vimpat (a medication he was not on at the time). 

After all that medication, the 3:30 seizure was the last one for the day.  Robert’s breathing continued to be labored and he felt very warm to me.  I asked the nurse take his temperature and, sure enough, it was high and his pulse rate was extremely high.  Robert most likely aspirated during the seizures causing aspiration pneumonitis (this is a frequent occurrence during Robert’s seizure clusters). 

Rich took over that night and noted that Robert tried to do his word search puzzle but ended up just holding the pen and paper.  They both had a restless night due to the doctors starting IV antibiotics and the IV getting clogged with the antibiotics/malfunctioning.  At this point, Robert clinically had sepsis but if you are going to get sick, the hospital is the best place to do it! 

It was quite a balancing act of trying to continue to get as much information about his seizures while also treating the aspiration pneumonia. 

The hope was the doctors could still capture a seizure during the SPECT so he was taken to radiology Thursday morning.  The isotope has a short shelf life so they waited for a seizure for as long as they could.  I couldn’t go to radiology with him so I went to Starbucks, came back to the hospital cafeteria and got something to eat and tried to relax. 

After several hours, Robert was back in the room.  Unfortunately for the purposes of the test and gaining more information, he didn’t have a seizure.  They rescheduled the SPECT for Friday morning. 

Robert was not going to be released on Friday as originally planned since he needed to be seizure free for 24 hours and he was still being treated for the pneumonia. 

They changed his antibiotics to Vancomycin on Friday.  He was still running a high fever and was not on his usual seizure medications.  They wanted to try the SPECT scan again.  I was exhausted by this point, Robert was an absolute mess of confusion and illness, and I was ready to call off the SPECT. 

I ultimately decided to let them try it one more time.  We had already been this far and I wanted the doctors to get as much information as possible so we could decide on treatment options later. 

Finally!  They were able to capture a seizure on the SPECT scan.  Once he was back in the room, they loaded him up with an IV of Depakote and started his regular medications.  All the leads were removed from his head! 

Now we had to get him past the infection. 

Robert was put on another antibiotic (I’ve lost track of how many they tried but I think we’re up to four or five). 

Later that day, his white blood count was trending down and by Saturday the doctor left it to me to decide if I should take Robert home or keep him one more night.  I opted to keep him on the IV antibiotics one more night just to be on the safe side. 

Robert was more alert and feeling better by Saturday afternoon so I took him on a field trip to the cafeteria.  We were almost at the end of this ordeal! 

Robert’s WBC was low enough on Sunday that I was comfortable taking him home.  I brought donuts for the nurses to thank them for their care during our eventful week and was happy this was over.

My overriding hope after all this was that the doctors gained enough information to make a recommendation on treatment going forward.  I definitely did not want us to have gone through this for nothing. 

Six weeks later, I had my stroke and I will share in my next post what we learned from this VEEG, our treatment options and how my stroke plays into our decisions.

Sunday, July 1, 2018

What This Caregiver Misunderstood About Self-Care

As a caregiver, I know the importance of self-care.  Heck, my friends and co-authors have written books about it!

I know, really know, how critical self-care is for caregivers. 

It is extremely important for caregivers to find a moment to breathe.  To call a friend.  To treat ourselves to a pedicure.  To continue to paint or take photos or garden or spend time with grandchildren – whatever our passion might be. 

All of that is critical to the well-being of caregivers. 

It isn’t enough, though.  Not even close. 

After my small stroke I realized I completely misunderstood self-care. 

Stress can be very deceiving.  Sure, a pedicure can be glorious for an hour and even for a little while afterwards but it does not peel away the layers of stress that build up while caregiving.  What I have learned is that stress wraps you up like a cocoon until you can barely breathe and it does so quickly and quietly.  We may not even realize how ensconced stress is in our very soul because we are too busy caring for someone else (or several someones). 

After my stroke, I realized that pedicures and massages were terrific ways to relax for a bit but it was not the self-care I needed. 

I knew I was a caregiver who gave it my all but I had forgotten to take care of myself too. 

Self-care has to include making time for doctor appointments for ourselves.  I actually went in for my preventative care mammograms and had annual blood work done but I didn’t pay any attention to the results.  I had fairly high cholesterol for years but never talked to my doctor about it.  It didn’t occur to me to mention that my mom also had high cholesterol and that my dad had incredibly high blood pressure.  As a caregiver, I would have logged all of this information for my loved one and informed the doctors and helped formulate a plan of action.  For me?  I didn’t do one thing about it. 
Self-care has to include exercise.  I know – annoying!  This is something I always told myself I should do but rarely did.  I absolutely loathed it when I read how important it was to exercise.  Who were these people who had all this time?  I, as a caregiver, certainly cannot find the time to exercise.  In fact, I convinced myself that the physical labor I was doing for Robert and the constant movement of caregiving was enough exercise.  Certainly the restocking of supplies, taking Robert to and from the bathroom and helping him change his clothes – all of that – was enough exercise for me.  I was constantly on the move until I collapsed into bed exhausted.

That all changed after my stroke.  My doctor said to exercise and, after hits and misses of the best time to do it, I found a time.  I found 30 minutes in my day to walk.  In fact, sometimes I can even find an hour. 

Self-care has to include noticing what we, as caregivers, put in our mouths.  Are we drinking soda or water or too much alcohol?  (I hated drinking water and would often drink soda.  Worse, sometimes I would go all day without drinking anything.)  Stress, hospital stays and other emergencies are terrible for our eating and drinking habits.  This was a very busy year in the hospital for our family and I routinely grabbed a pastry, French fries, brownies or other junk food to sustain me.  In fact, during one particularly stressful time around Easter I literally only ate Cadbury mini eggs for an entire day.  No joke. 

Go ahead and gasp but I assure you I am not the only caregiver to eat crap on a regular basis. 

All of the self-care quick refreshers I’ve written about in the past are important but I also know they are not enough.  What caregivers really need is respite.  I mean a real respite.  A length of time that does not include sorting medications, dispensing medications, taking vitals, washing urine soaked clothes or driving to physical therapy and doctor appointments (all while working full-time).  

A respite that includes getting as much sleep as we need! 

Unfortunately, respite is very hard to come by for caregivers.  It is incredibly difficult to arrange and usually impossible to find.  Robert has a social worker who is supposed to find us 14 days of respite – per year!  I can’t even imagine such a luxury!  However, that benefit is on paper only.  It is actually fiction because there are not enough care homes available for Robert’s level of care.  This creates more work for me to find a Skilled Nursing Facility or other care facility to accept Robert for a short period of time.  Not to mention the cost involved in sending him to a private pay SNF! 

Caregivers need the respite but we have to work our butts off (even more than we already do) to get it.  Sometimes we give up and just live with the fact that respite is not available.  Sometimes we just can’t afford a respite.  Caregiving is expensive enough! 

I am not giving up this year and, especially after the experience with the Skilled Nursing Facility last year, I will make sure Robert is assessed properly so he does not suffer falls again.  I will make sure his medication schedule is attached to the doctor’s referral so he gets his medication when he is supposed to and I will keep my fingers crossed for success. 

I will try not to worry while I am away.    

Self-care is hard work but it is vital and it is more than a moment or two of peace and quiet.

I don’t know if I would have listened to anyone saying all this before I had my stroke but I hope someone listens now.  I thought I was doing enough with pedicures and massages but it was not enough.  I won’t give those up because they are fantastic but they are not enough. 

Not nearly enough. 

Caregivers: you are too important not to take care of yourself too. 

We are worth the effort too.