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. 

Sunday, June 24, 2018

Making Changes and Even Accepting Help

Let’s get this out of the way first:  Yes, I still have some residual numbness and tingling from my small stroke.  I wake up every day assessing my numbness.  Thankfully, the intensity is getting less and I rarely feel like I have a fat lip but my face still feels a little frozen and my hand feels like it is still asleep.  It will take time for all of that to go away but not a day minute second goes by that I am not incredibly grateful at how lucky I was to have this be the only remaining issue from having a stroke. 

I am not about to squander that good fortune.

My neurologist said I needed to exercise more (well, technically, start exercising), drink a lot of water and eat healthy.  I had already significantly reduced my carbs so, hey, that’s something  (please don’t mention cake, cookies or ice cream around me or I will be reduced to a puddle of tears of longing and sorrow and no one wants that).

She also said I needed to reduce my stress. 

Oh my!  That’s a tall order but I am motivated to do it!  I want this to be my first and LAST stroke.

My ideal way to reduce stress would be to buy a beach house, walk the dogs by the ocean every day, watch sea otters (or seals?) frolic in the water, write and eat the vegetables Richard grows in his garden (we would starve if we depended on me to grow anything).

The problem with that plan is we do not have a beach house fund, I still need to work if we want to be able to feed the dogs and I really don’t know the difference between a sea otter and a seal. 

Plan B it is.

We hired a house cleaning service which is the best (and easiest) thing I have done.  What a load off!  I wasn’t just stressed from having to keep everything super clean (especially with the illnesses we had going around here last winter) but it was the stress of stressing out because I did not have the time to do it!  (My stress even has stress!)  Having housekeepers come twice a month has been a tremendous relief. 

I emailed all of Robert’s doctors (he has several!) and told them what was going on.  One recommended getting a case manager from Robert’s medical center and referred me to a specific person.  I didn’t even know this position existed!  She’s been a huge help with referrals for home health agencies as well as for respite care.  Kudos to Robert’s team for not only caring for him but also recognizing the need to help the caregiver!  Love those people.

Richard is in charge of grocery shopping but has been laid up with his own health issues.  He started ordering groceries online and scheduling them for delivery!  This is so simple but it saves a ton of time and has been a wonderful way for both of us to reduce some of the stress of running a household. 

Me and Rach in the ER
Robert has been going to physical therapy twice a week but I reduced it to once a week.  I know that more physical therapy is best for Robert but I also know how stressful it is to make such an outing (not to mention missing some work) in order to take him to these appointments.  Robert will not suffer from a slight reduction in his PT schedule. 

I am still working full-time but reduced my time in the office.  I leave mid-afternoon and do work from home for a few hours.  So far, that has been a wonderful change.  I do wonder if I will be able to continue to work full-time and care for Robert, however.  For now, I have to if I’m ever going to get that beach house! 

I planned a much needed vacation with Richard (something we’ve wanted to do for a while) and called an agency to help find respite care for Robert.  I now have two agencies working to find facilities and I will also continue my own search.  We need this vacation and I refuse to feel guilty about admitting that we need this.  Respite care is tough to come by and I’ve been told that it may not be possible to find until two weeks before our vacation.  Yikes!  That’s a little stressful for a planner like me but I have faith it will work out.  It has to.

Finding a home health aide is the last thing I am working on.  This is the absolute toughest thing for me to do.  It’s not because I don’t think others can do as good of a job as me or Richard but because what is needed is not hard.  I can do hard things so I can certainly do the little things too!  I pride myself on plowing through tough times and getting things done. 

I can do hard things. That’s practically my personal motto.  I mean, I even have a sign that says that!

Taking care of Robert is not “hard” but it is time-consuming.  It is a relentless barrage of laundry, changing briefs, helping in the bathroom, bathing, organizing medications and dispensing medications, doing his breathing treatments and walking with him everywhere he goes so he doesn’t fall.  It is taking vitals twice a day and keeping a log of seizure activity and any signs of pneumonia.  It is waking up when he gets sick or confused in the middle of the night and calls out for me.  It is constantly staying vigilant so he stays healthy and, frankly, alive.  

I just want someone to help out once or twice a week to fold laundry, take Robert to the bathroom, get him into his pjs and help him do his PT exercises.  I would love to have someone stay with Robert while Richard and I went to dinner or just coffee (decaf for me, please). 

It’s tough for me to let go and allow this extra help in our home because I want them to do things that I know I can do. 

Except that I just can’t any more.

That’s the realization.  Yes, I can do hard things but it’s time for me to allow myself not to do them all the time. 

It has only been three weeks since my stroke so I think I have done a good job with the changes.  I am going to keep walking, drinking water, dreaming of cake, reducing stress and accepting help. 

I have to. 

That just might be another hard thing that I can do. 

Saturday, June 9, 2018

Don’t Freak Out but I Had a Stroke

Yep, that’s what I have been saying to people lately.  I look the same but, yes, I had a stroke.  Not a TIA but a small stroke.  My episode in March now appears to have been a TIA.

I am okay and I am very, very lucky. 

The stroke was an Ischemic Stroke in the right side of my Thalamus and caused the whole left side of my body to go numb.  A week ago, I had a couple of episodes like what happened in March (slight tingling in my hand and face but not bad) just before my whole left side numbness. 

My new home office decor
I knew this was a problem so Rach took me to the ER and I was seen immediately.  The hospital started their stroke alert protocols and put me in a room.  They did a bunch of neurological tests and I didn’t have any weakness; I was able to read, talk, touch my finger to my nose and to the doctor’s moving finger and saw all the fingers she held up.  I know these neuro tests as Robert goes through them all the time at his appointments but it was very surreal having to do them myself.

My only symptom was that I had numbness and tingling (kind of like my left side was asleep). 

After passing everything with flying colors, they didn’t think I had a stroke.  Stroke alert was cancelled but they ran some blood work and did a CT scan just to be on the safe side.

They still didn’t think I had a stroke. 

I only had the whole left side numbness.  (Let me tell you how odd it is to have half your forehead feel numb!) 

The doctor had no idea what the issue was and suggested it was possibly a panic attack caused by stress.  Yes, I have a lot of stress in my life but I haven’t had a panic attack in years and I have very specific triggers for them. 

I knew this wasn’t a panic attack but also know that stress does weird things to the body. 

I didn’t know why I had numbness, the doctor didn’t know but it seemed reasonable to think this wasn’t a stroke.

So we left the hospital.  We all thought the numbness would be gone by morning. 

When I woke up on Sunday, my leg numbness was gone but I still had the numbness in my left arm and face.  My face felt like I had a Novocain shot from the dentist except without the drooling. 

The ER doctor called to check on me and became concerned that I still had numbness. She ordered an MRI and, as luck would have it, there was an appointment later that afternoon.  I’ll take it! 

Rach went with me to the MRI (poor girl was so worried about me and I hate worrying my family!).  I tried to convince the radiology tech to show me my scan but he refused. I pulled the “I won’t know what I’m looking at” ploy (even though I have seen enough of Robert’s MRIs to know if mine was normal or not).  He must have seen right through that so I left without seeing my scan.  Oh well. 

The next morning Richard had a third skin graft surgery so Robert and I drove him to the hospital and got him settled in pre-op.  Robert and I waited with him doing his word search book and me answering emails from work.  I called to set up an appointment with my neurologist and found out he had scheduled a phone appointment for me so I waited for his call.  He was on vacation but had been answering my emails and was on top of monitoring what was going on with me.

He soon called and told me what happened Saturday night was, in fact, a stroke. 

You mean a TIA? 

No.  You had a stroke.  

Believe me, hearing that is enough to practically cause another one!

He told me I needed to start on blood thinners immediately and he wanted me to take a “load” dose of four pills then one a day along with the aspirin.  He also increased my cholesterol medication and told me to go to the ER if I have any other symptoms. 

He called the meds into the hospital pharmacy since I was already at the hospital and I took Robert to get them.  The pharmacy was up a hill so I set Robert in the shade and told him to stay put.  He joked he would go to France.  Funny guy.  I’m worried about my stroke and he is cracking jokes.

Probably the best thing for me. 

I called Rach, a couple of friends, Other Brother and realized I couldn’t even tell Richard yet because he was still in surgery!  After taking the meds and talking to everyone I started feeling numbness in my leg again and freaked myself out. 

Since the doctor had said to go to the ER if I had any other symptoms, I walked to the ER, pushing Robert.  I called Rach for me and Richard’s brother, Jimmy for Richard.  Jimmy was actually at the same medical facility at his own doctor’s appointment so he came over to check on Richard while I went to the ER.  Rach met me at the ER and ran between me and Richard to update him when he came out of surgery and to keep an eye on me. 

Robert sat in a corner of my room and contentedly worked on his word search puzzle. 

I explained to the doctor what was going on and he was very reassuring.  He explained that it was unlikely I was having another stroke since I just loaded up with blood thinners.  He called the neurologist on call and ran more blood work and did his best to keep me calm.  He ordered a heart monitor for me and, after a short while, I was able to leave and visit with Richard in the post-op room. 

It was quite a day. 

I’ve since seen a stroke specialist who ordered more tests, more lab work and answered all my questions. I’m waiting on all the results but, in the meantime, I need to watch my diet, exercise more and reduce my stress. 

Reduce my stress. 

After the year I have had, I am ready to do just that.  Yes, it is cliché but I am going to say it:

This was a wake-up call.

My neurologist said I am very young (why, thank you!) and in otherwise good health.  She sees no reason why, with lifestyle changes, this will not be a one-time thing. 

She even said that my residual numbness in my hand and face and the occasional leg numbness will most likely go away eventually.  I would love for the numbness to go away but, right now, I am using it as a constant reminder that I need to make changes. 

I am very motivated to do so and am very grateful the stroke was a small one.

Note to Universe: Close call with a semi?  Stroke?  Got it.  Message received.  Loud and clear!  (And thank you for not adding dribbling to the face numbness – that would have just been piling on.)