Another Medication Change

For someone who proclaims to loathe medication changes, I allow a surprising number of them.

One of two containers we use for meds for the week

A year ago, Robert’s seizure activity changed. He went from having one or two a day to having one or two a day and then having dozens every couple of weeks.  These clusters of seizures are scary since there is no telling when they will stop.  We use Ativan (also known as Lorazepam) to stop the seizures and have steadily increased his dose during these clusters.  We are supposed to max out at 4 mg per day but I have on rare occasions given Robert as many as 6 mg by the end of the day.  (I always check his vitals before and after doing so and always notify his neurologist of these clusters.)

Months before the clusters, the neurologist added Trileptal to Robert’s bucket of meds and after much trial and error with the dose finally settled on 150 mg in the morning and 300 mg in the evening.  It is a very low dose but anything more than this makes Robert irritable, grumpy and unhappy. 

Robert’s seizures continued to change over the past year with us seeing clusters of seizures every couple of weeks but days could by without any seizures.  The seizure activity increased significantly throughout the winter and the neurologist suggested the seizures could be “seasonal.”  In Robert’s case, much worse in the winter than in the spring and summer.  This seemed to be the pattern over the last couple of years and with another winter coming, the steady increase in Robert’s ammonia level as well (from years of being on Depakote), we discussed another medication change.

Robert before an early bedtime

Ugh!

Robert and I usually see the physician’s assistant when we go for the quarterly check-ups.  Julie is wonderful and smart and spends as much time with us as we need.  I am satisfied that she consults with the neurologist about any changes in Robert’s health and care and, frankly, she’s much easier to talk to than Robert’s neurologist. (Robert actually has two neurologists: one for his epilepsy and one for the movement disorder. The Epileptologist is the one that is great but not as easy to talk to as the other.)

At Robert’s most recent appointment, Julie and I had a long discussion about the high ammonia levels and recent seizure activity.  Robert slept through most of the meeting which caused Julie much concern.  The sleepiness is caused from his ammonia level being way too high (it is over 100 and normal is under 30).  Julie and I also talked about our concerns that winter is coming and the seizure activity is likely to increase.

Julie suggested a plan to decrease the Depakote and add a fairly newly FDA approved drug (Fycompa). 

As much as I hated the thought of going through another medication change, I knew we had to try.  The seizures last November alone numbered over a hundred – I do not want Robert (or us) to go through that again.  Plus, the ammonia level really is way, way too high.  Robert is already maxed out on Levocarnitine to help reduce that and we had a horrid experience with Lactulose so I won’t try that again.  Reducing the Depakote is the remaining, logical answer. 

Except Julie asked me an interesting question: of all the medications Robert is on, which one do I think provides the best seizure control?  My answer: Depakote and Clonazepam. 

Yep.  This is going to be tricky. 

After the appointment we had to wait a few weeks to get an approval for the Fycompa.  Once that was authorized, we added a very low dose (2 mg) of Fycompa at bedtime and also decreased the morning dose of Depakote by half.  After a week, we increased the Fycompa to 4 mg at bedtime, keeping the Depakote at the same lower dose. 

It has been just over a week since starting the new medication regimen.  We do see some side-effects of the new med such as sluggishness, being off-balance and an ever so slight uptick in irritability. 

We also have seen an increase of seizures over the last week which just proves my theory that Depakote is one of the meds providing the best seizure control for him.  We can’t have such high ammonia levels, however, so we are continuing with the new medication.  I am hoping the Fycompa will “catch up” and get the seizures better under control, particularly since winter is coming (I realize I sound like Jon Snow).

Taz attempts a selfie

What I have realized about these medication changes is that while I don’t like them and they don’t always work out, they are not the center of our universe. 

Robert still enjoys going to Day Program;

Richard still works on his water conservation efforts;

I still post silly pictures of my puppy (who is going on three!);

We all still participated in a caregiving study;

In other words, life goes on whether it is with new medications, seizures, mood swings or drowsiness. 

I may loath the medication changes but I am willing to give them a try in order to give Robert a shot at reduced or (gasp!) zero seizures. 

Yep.  Hope always wins. 

Caregiving Study: Atlas of Caregiving

Richard, Robert and I recently participated in a study about our caregiving day.  If this sounds familiar it is because Richard and I did do something similar last year.  We kept a log of our daily caregiving tasks which was quite an eye opener.  I had no idea how many different caregiving tasks were a part of our day!  I wrote about keeping the log which you can read here.

Rajiv Mehta, Board member of Family Caregiver Alliance and Principal Investigator for Atlas of Caregiving, had worked with Denise Brown of CareGiving.com to create the log and needed test subjects participants. Richard and I were eager to help.

A view of Robert from my camera

Fast-forward a year or so and Rajiv asked me and Richard to be a part of a similar study – except this time, we wear body cameras and monitoring devices that pretty much track everything (heart rate, body temperature, sweatiness (there’s some technical term for that but that is basically what it means) as well as movement.  We kept a scaled down version of our log which asks for the activity, time of day, length of activity and stress level of the activity.

We wore the monitoring equipment and cameras for 24 hours and then met with Rajiv and, Dawn, his partner for the study, to go over some of the results. 

Robert eats breakfast while I organize his meds

Robert even participated in the study which didn’t surprise me in the least.  When Robert lived independently he signed up for every study his doctor told him about and tried out new medications as well as medical devices being studied in order to help those with epilepsy.  Of course Robert wanted to participate in this study too!

The hardest part of the study was getting Taz to stop barking at Rajiv and Dawn when they visited the house.  The only other part of the study that gave me some concern were the body cameras.  I was afraid I would go to the bathroom with it on because they are so easy to forget about!  I never forgot to take the camera off when necessary and it took me about two minutes to not even care if I was even “camera ready” at all times.  (I think we could definitely have a caregiving reality show although Taz may not know what to do with all the strangers in the house all the time.)

Robert captures himself in the mirror while grooming

What surprised me about the study this time was the concept of time. Time is a subject that fascinates me because I am acutely aware of time due to Robert’s seizures.  Ten seconds may not seem like any time at all but when I am timing a seizure, it seems like an eternity.  Particularly when the usual seizure of 10 seconds turns into 20, then 30, then a minute and a half or more. 

Many caregiving tasks don’t take longer than five or ten minutes so it may not seem like much to a non-caregiver.  The killer is that these five or ten minute tasks are relentless! 

Two minutes to change the laundry and fold towels;

Five minutes to tidy up the house;

Ten minutes to get Robert up for the day and give him meds;

Five minutes to get Robert to the bathroom;

Ten minutes to get Robert into the tub;

Fifteen minutes to help Robert dress;

Thirty minutes to prepare medications for the week;

Five minutes to restock Robert’s supplies;

There are breaks between the tasks but there is always something to do!  And the interruptions – oh boy!  Caregivers know about interruptions. 

Robert's view of Richard waiting for him

We are still going through the pictures that were downloaded from the body cams which I think will be interesting since they will be from the other person’s perspective. I get to see what I look like to Robert, for instance.  I am very interested to know what he sees and suspect I will do a follow-up post about it.

Rajiv and Dawn were terrific to work with and we offered to participate in a follow-up study if they do one.  In the meantime, they are still looking for participants for this study and I highly encourage anyone in the Bay Area or Central California area to contact Rajiv about participating.

Rajiv explains a bit more about the study:

Share your experience of day-to-day caregiving to help Family Caregiver Alliance advocate for new technologies, improved services, and better policies to make caregiving easier and more effective. The goal of the Atlas of Caregiving project is to better understand the physical and emotional impact and time of providing care, in the hopes that we can use the data collected to impact change. We are seeking family caregivers, in the San Francisco Bay Area, who actively provide day-to-day care (chores, companionship, medical activities, etc.) to a family member or friend due to their illness or disability. Project participants are interviewed about their caregiving situation, and keep a log of their activities and wear a couple of small sensors for a day. Participants will be compensated $200. Get more details about participation here.

Robert sees Taz checking on him

I am happy to answer any questions about the study if you are on the fence about participating.  It really was painless and it was a nice surprise to get paid for it as well (we would have done this for free just because we hope the results will eventually help caregivers).  

Many thanks to Rajiv and Dawn for their work on this study, being so kind and respectful of our time and getting to know Robert a bit more.  And for putting up with our crazy and loud puppy! 

Happy 50th Birthday, Robert!

Robert turns 50 years old today!

After a busy year and an insanely busy summer, I think it is only appropriate to get back to this blogging business with a celebration or two – it is also my and Richard’s 18^th anniversary!

Eighteen years ago, I never imagined Robert’s birthday and our anniversary would intersect more than a phone call to wish my brother a happy day.  Robert lived independently 18 years ago and Richard and I were blending our family of three kids and numerous animals.  Robert lived in a different city with both of our parents close by and I naively did not give his future living arrangements or health a second thought. 

It never even occurred to me that one day both Richard and I would be caring for Robert after my parents passed away and as Robert’s cognitive and mobility function dramatically declined. 

In fact, it didn’t really seem in the realm of possibility that Robert would be around for 18 more years with as many times as he ended up in the ER from accidents, falls and seizures.  It is no secret that I have worried about Robert making it to this milestone birthday.  The guy has had more close calls than I can count (and that really isn’t much of an exaggeration). 

Robert dodged death when he was a teenager and nearly drowned from having a seizure in a pool.

He survived two brain surgeries, 45 years of numerous anti-seizure medications and their long-term side effects (one of which is a toxic level of ammonia right now which we’re trying to get under control), a VNS implant and removal, a Deep Brain Stimulator implant and resulting life-threatening infection traveling the leads to his brain, head injuries, burns, broken bones, pneumonia, sepsis, pneumonia and septic shock, pneumonia, pneumonia, pneumonia. Not to mention the seizure clusters he started having a year ago and which continue on a pretty regular basis.  Status Epilepticus is my concern during these awful episodes.

But he made it to 50!  Which surprises and amazes and confounds me all at once. 

Robert, of course, is not surprised at all.  He tells me frequently that God told him he wasn’t done with him and he will let him know when he is done. 

He is so matter-of-fact about dying and does not worry in the least. 

Which makes me realize Robert making it to 50 carries more significance to me than to Robert.  For Robert, his birthday is a day for him to get presents and cake and extra Rocky Road Ice Cream.  It doesn’t matter if it’s his 40^th, 50^th or 75^th.  As long as he has Rocky Road Ice Cream and we make a fuss over him, he will be happy. 

To me, Robert making it to 50 years old shows just how resilient and strong that guy is and how the power of believing in something so strongly (“it isn’t my time to go yet”) can yield such profound results.

As far as me and Richard making it to 18 years, I have to admit I am a little surprised, amazed and confounded by that as well.  We have experienced joy, success and milestones as the kids grew up but also crushing obstacles – never defeats!

We continued to walk through all of it together (sometimes one pulling the other). Our anniversary is a testament to the devotion, love and commitment we have for each other and family.

Today we will celebrate birthdays (we have several September birthdays in the family) and an anniversary by hosting a family party. 

And, of course, enjoying some delicious Rocky Road Ice Cream. 

Car Rides

Some of my favorite time spent with the kids as they grew up was when I was driving them to school or activities or picking them up from a sleepover at a friend’s house.  Sometimes they were quiet as they snuck in a few extra minutes of sleep in the early morning before school or enjoyed a few moments of solitude after a busy soccer, dance, football or cheer practice.  Most of the time, we talked about their plans for the day, experiences that happened during the day or worries about an upcoming test or friendship.

Car rides sometime even involve ice cream! 

There were silly times when the girls and I played a musical guessing game while listening to the local pop radio station.  I did surprisingly well considering I am (1) not musically inclined in the least and (2) listening to music the girls knew much better than I did. 

There were serious times, too, such as driving to school, listening to the radio and hearing the chaotic news accounts come in about planes crashing into the World Trade Center and the Pentagon (and as we later learned, a field in Pennsylvania). Silence, fear, tears, concern and empathy filled the car that September 11 morning.

When the kids were able to drive on their own, my main thought was concern for their safety. A close second was missing my time with them.  Hearing their stories, car singing (off-key, of course and grabbing whatever object was available to use as a microphone), listening to their worries about the future, car dancing and just being together made my heart happy (and I like to think theirs, as well).

There is something about the enclosed space of a car while traveling that presents opportunities to nourish relationships. 

While not quite the same, I spend time with Robert driving him to appointments and his Day Program. Robert is not one to talk much while in the car as he enjoys working on his word search puzzle. I might try to start a conversation with him about his day or what puzzle he is working on but he is not one to engage in car dancing or elaborate conversations. 

Until recently.

One morning while I drove him to Day Program, Robert worked on his puzzle book as usual.  Without prompting, Robert looked up from his book and began to retell the story of how he almost drowned when he was 16 years old.  I heard the same details I always do when he tells this story: he had dinner with a friend then went out to the apartment pool with his friend and our Dad.  Dad was in his “working clothes” (a suit).  Robert tells this story almost verbatim when he repeats it from time to time.

“I stood at the deep end of the pool and was about to dive in when a seizure hit. I was at the bottom of the pool and Dad dove in to get me and my friend called the paramedics. I was in a coma for three days. God spoke to me and told me he wasn’t done with me yet and it wasn’t time to go yet. God will tell me when it’s time to go.”

I wondered why Robert wanted to tell me this story again on the way to Day Program and decided to ask him questions about the story I have already heard dozens of times.

When God spoke to you did you see him or just hear him?

“I didn’t see Him.  I heard God.”

Are you afraid of dying?

“No. I am not afraid to die.”

Well, when you die you’ll get to see Mom and Dad. 

“I don’t think I will see Mom or Dad.  They weren’t Christians.” 

Taken aback, I said they were Christians and both went to church.  I assured him he would see Mom and Dad.

“I didn’t know Mom was a Christian.” 

Yes, she was but no matter what you will still see her.

“Maybe I will see Mom then.”

I’m sure you will see Dad, too.  He believed in God but just didn’t go to church very often. People don’t have to go to church to believe in God. 

“Dad didn’t act like a Christian.”

Well, you got me there. 

Time to change the direction of this conversation.

Do you think God will talk to you again? 

“He will tell me when it is time to come.  I got a special blessing from God with that.”

Will you be able to see God after you die? 

“I will be able to see God right away when it is my time to come.”

Car rides.  A simple car ride has given me a small glimpse into Robert’s matter-of-fact religious beliefs and the comfort of knowing Robert will be at peace when it is his “time to come.” 

I wonder what the next car ride will bring.