Sunday, May 29, 2022

Major Changes

I’ve been working on this post for a couple of weeks. It is very hard for me to write and might be hard for you to read. 

We have made the difficult decision to find a facility for Robert. 

Ugh. See? That is a hard sentence to write! I hope it wasn’t too hard for you to read. 

Robert has lived with us for more than nine years. For several years before that I managed his care while he was in Skilled Nursery Facilities, hospitals, Assisted Living and a Residential Care Facility. 

How did we come to this decision? Why now? 

We first considered hiring another caregiver. We had a caregiver before the pandemic and Robert loved her. He also went to a Day Program five days a week. Both Evelyn and the Day Program were very helpful. Then the pandemic hit and we hunkered down. His Day Program switched to a virtual program and his caregiver hung up her caregiving hat. I really don’t think a new caregiver could give us as much help as what Robert needs. (Not to mention, much of his needs are through the night and I can’t have a live-in caregiver.) 

I haven’t posted much so this might be a shock to people who don’t see us every day. Heck, the decline has even been difficult for us to see and we are with him every day. 

My daughter has been gently telling me for a while now that it is probably time to think about another living situation for him. She sees how physically demanding it is on Richard and I and she worries about our health. Even Robert’s physical therapist knows how much we do and ends up giving me tips and exercises at Robert’s therapy sessions so I don’t hurt my back when moving him. His neurologist even said we might want to start looking for a place for him before it becomes an emergency situation. 

Hmm. I hear all of them saying something but I can’t quite put my finger on it. 

Not surprisingly, it has been difficult for me and Richard to admit there has been such a dramatic decline. 

Since moving in with us, Robert has gone from using a walker on his own to needing both me and Richard to transfer him from his wheelchair to the bed. He can walk about ten steps using his walker but only with one of us behind him, practically holding him up and definitely keeping him balanced. 

Robert’s swallow disorder has caused numerous bouts of aspiration pneumonia which land him in the hospital. A related and equally upsetting change: Robert can no longer have his beloved Rocky Road ice cream! Those bits of marshmallow and nutty goodness make him choke so it’s just plain chocolate now.

In nine years, Robert has gone from mostly dressing himself with my supervision and encouragement to me bathing and dressing him. 

Robert’s short-term memory has become non-existent. He will ask how we’re doing dozens of times during the day, even if we just left the room for a minute and returned. It’s groundhog day on repeat throughout the day. 

He loves to look at pictures which we have throughout the house but he needs reminding who everyone is and sometimes doesn’t make the connection that Richard and I are the same people in the photos. 

Robert loves his game shows and talks to Steve Harvey likes he’s his best friend but we have to be careful not to watch any of our favorite crime shows around him. If we do watch something with a disturbing scene we have to reassure Robert that it is not real. 

We try to stick to game shows.  

Meals take longer and longer. (I’m talking hours.) Robert is easily distracted by crumbs or folding his napkin just right. I recently learned this is called perseveration. You can see it in action here

Sleeping through the night is hit or miss now. We started using melatonin (at the suggestion of his doctor) which helps some. He still sometimes wakes up at 2:00 a.m., wide awake and asking if it is time to get up. 

He doesn’t make the best decisions. I used to be able to leave him alone in the bathroom until I caught him trying to pull up his pants and stand up by himself (he can’t do that without falling so that is a disaster waiting to happen.). 

Robert went from manageable urinary incontinence to occasional bowel incontinence to trying to stop himself from doing either once he’s in bed. He started to put tissues down his brief to stop urinating or having a bowel movement. I placed the tissues out of reach. He then just used his hands to stop urinating and to take the poop out of his brief. (Sorry for the graphic details but caregiving is messy and I don’t want other caregivers to feel alone if they’re dealing with the same situation.)

I immediately ordered onsie pajamas that zipped up in the back. There’s no way he could get the pjs off or his hands down his brief. I paid an exorbitant fee for overnight shipping but this was not a situation that was safe or healthy for him or us. 

The onsie works but, unfortunately, they make him so hot! After some research, I tried a different method to keep him clean which involves putting a folded sheet across him and tucking it in under the mattress so he can’t get to the brief. It seemed like a good idea until I saw him on the camera easily maneuver around that little hack. 

Back zipper onsie it is.  

I have tried to stay one step ahead of his decline but it is accelerating at a rate I can no longer keep up with. 

There’s been a decline. I mean, a dramatic decline in movement, cognition, memory and impulse control. All of it. 

And he is not going to improve. This is his neurodegenerative process due to his numerous concussions, uncontrolled seizures, brain surgeries and medications. 

What is hard for me about this decision is that he is not difficult to care for every minute of every day. He is still able to have conversations although his mumbling is much more prevalent. He is laughing at a game show as I type this. He is safe in his wheelchair, eating a snack and drinking his water while doing his puzzle book and watching whatever game show Richard put on. Taz walks by to go outside and Robert introduces himself as Robert Allen Wright then proceeds to spell it out for him. Robert pets him and tells him he loves him very, very much and asks how he is doing today. Sure, he seems to expect Taz to answer him but he doesn’t get upset when Taz stays silent. 

Because I am who I am, I just keep plowing through and taking care of him while not realizing or seeing his dramatic decline. That’s what I do. I see a problem, work a problem and get through the problem. (And deny the problem if I’m being honest.) 

I always had a vision of how my caregiving journey would end. Richard and I would care for Robert – in our home – and he would continue to end up in the hospital with aspiration pneumonia but one time he wouldn’t make it. I would be with him at the end just as I was for our mom and then, years later, for our dad. I am not trying to be morbid and I didn’t know exactly when this would happen but it is what I prepared myself for. With Robert’s health issues and numerous hospitalizations for pneumonia and close calls with sepsis, I thought this was a pretty good idea of how things were going to go. 

I like to plan and prepare. I should be an honorary Boy Scout. 

On the other hand, we all joked that he would outlive us all because, well, he’s Robert. 

Funny, though, how these “plans” for the future don’t always follow the script in our heads. 

So the script has to change. I don’t anticipate being able to find a suitable place for Robert until after the first of the year but I am starting the search. I have contacted his Regional Center but that is a slow process. 

Our caregiving will not end but it will take on a new direction. Richard and I will still oversee his care and make sure his needs are met and he is happy. I have a feeling Robert will bring joy to his caregivers just as he does to us and all of you.

I hope you understand our decision. 

Sunday, September 19, 2021

The Deep Brain Stimulator for Epilepsy: Progress

The first time the Deep Brain Stimulator was activated, Robert’s seizures increased

No, that’s not supposed to happen. 

I deactivated the device but hoped we would be able to somehow, eventually, use all this new hardware in Robert’s body. The leads, the battery pack – everything he went through to get it cannot be for nothing. 

Robert’s neurologist sent me a message to come in at the end of August to try again. I was so happy that there was another way this device just might work! 

I had a management meeting at work in the morning and Robert’s appointment in the afternoon. My brain was getting a workout today! Good thing I had fresh memories of our beach vacation floating around in my head to keep the stress at bay. 

Dr. K, Robert’s epileptologist, came into the room as enthusiastic as ever. He clearly cares about his patients and is as disappointed when a treatment doesn’t work for Robert as we are. He will not be deterred, however! 

I sat with my list of questions and Robert sat with the box holding the Patient Programmer (basically, a phone with an app) and a wireless recharger (the part that goes over the battery pack in his chest). 

Dr. K explained that he talked with Stanford who conducted the DBS study that Robert had been in. The setting they used in the study was different than what Dr. K started with during the first activation. He was confident this different setting was going to have a better result. 

How will the setting be different? 

I am not a scientist but Dr. K was both patient and brilliant at explaining the process to me. I created a rudimentary illustration to show to my fellow non-scientists (apologies to any readers who are actually scientists!). 

Basically, the first setting had sections 1 and 2 activated. That created a constant electrical current in the brain but, for Robert, it was too much too soon and it caused him to have seizures. 

For this second try, only section 1 was activated. That allows for a more diffused electrical current which should be easier on Robert’s brain. We start at Setting A which is 2 milliamps in just that section 1 (in both leads). After two – four weeks I can increase it using the Patient Programmer and move the device to Setting B. That will deliver 3 milliamps – still in both leads but only in section 1. 

If all goes well, a month after Setting B is activated we can go to Setting C (4 milliamps). Dr. K says we can eventually get up to 7.5 milliamps but that there is no statistical difference in performance between 5 and 7.5 milliamps. 

I asked if we should leave it on longer this time if it does cause seizures again. Maybe Robert’s brain needs to get used to it? Dr. K said that might be a solution but also explained there were other settings he could try. He sounded very confident that we would be able to find a setting that worked for Robert. He said the amount of people that have an increase in seizures from the DBS is in the single digits. We just need to find the right setting for Robert. 

Photo of leads
(Credit: Medronic)

Once it was activated again, Dr. K asked Robert if he felt any tingling. Robert said he didn’t feel anything (that is not unusual but some people do have a sensation on one side of their body when it is activated. That’s nothing to be concerned about.). 

We talked about reducing his medications once we know it is working. Dr. K is very concerned about Robert continuing on the Depakote since it is affecting the ammonia levels in his liver so much (which causes confusion, sleepiness and mobility issues). 

If this DBS actually starts working I will be thrilled to start reducing the meds. Getting Robert to have more functionality and mobility not only helps him but us. It also would greatly help once we are no longer able to care for him (I have to think about these things). 

We left the office very hopeful (at least I did; Robert had long since fallen asleep while Dr. K and I talked about him). 

Robert had a couple of seizures over the next few days but nothing like when we first activated it. Eventually, they subsided. 

Was this working?? 

Not yet. Robert’s typical seizure cluster came pretty much on schedule (every 2 – 3 weeks) and his most recent one was a doozy. He had close to three dozen seizures in 25 minutes. Even his rescue med (Nayzilam) took longer to work than usual. 

Okay. The DBS at the lowest setting is not working. We didn’t really expect that setting to be the one that works but at least it didn’t cause more seizures. 

Three weeks after the initial re-activation and a week after the seizure cluster, I increased the device to Setting B. Robert did feel like he was being “tickled” once I increased the setting but it went away after a few minutes. 

The plan is to increase the device to Setting C in 3 – 4 weeks. If we see fewer seizures, that’s when we can start reducing his medications. I don’t want to get ahead of ourselves or jinx anything since we just got to Setting B but we are on our way! 

I hope this information helps you understand the Deep Brain Stimulator from a patient or caregiver perspective. As I mentioned, I am not a scientist or a medical professional but I am happy to answer any questions about this surgery and the whole process. 

Thank you for following Robert’s journey to, if not seizure freedom, at least seizure (and medication) reduction. I know a lot of people are rooting for this to be successful! 

Oh, and to everyone asking the most important question: Yes, of course, Robert got a chocolate shake after the activation by Dr. K and chocolate ice cream after the increase to Setting B! 

Thursday, August 26, 2021

The Deep Brain Stimulator for Epilepsy: Take 2!

One of the questions asked about Robert getting the Deep Brain Stimulator was: what do we hope to get from it? 

While many may think the obvious answer is to reduce seizures the more complete answer is a bit more complicated. 

At this point in Robert’s life, the anti-seizure medications are what are causing so many problems. High ammonia levels (from Depakote) leading to reduced mobility and functionality and increased confusion. Vimpat literally making him lose his balance and his ability to walk (putting Robert on a very low dose has helped with seizures but any increase will negatively affect his mobility). 

Robert is on five different seizure medications along with a bunch of other meds to counter-act side-effects of those medications. He’s on so many a doctor seeing Robert in the hospital questioned him being on so many and said he’s never seen a patient on that many anti-seizure medications. The doctor clearly needs to spend more time in the neurology unit. 

(He tried to make changes to Robert’s medication regimen but anyone who knows me knows that didn’t happen.)

Our hope is that this DBS will control Robert’s seizures so we can reduce his medications and he can maybe even regain some of his functionality and mobility. 

That’s not asking too much, right? 

Robert went through the two surgeries and we were able to move up the appointment to get the DBS activated. (Thank goodness the neurologist was on standby for jury duty and could squeeze us in!) 

Time to activate this baby! 

At the appointment, Robert and I patiently awaited the neurologist. I reviewed my questions I had written down and Robert cracked jokes. 

I thought about how fascinating this device is, and, really, nothing short of a medical miracle. Leads go into the brain, hook up to a battery in the chest and it can be controlled with a phone and a hand-held programmer device that goes over the implanted battery to activate it. 

Robert has been very lucky with the quality of his epileptologists even though he’s had several of them. His current neurologist (Dr. K) is kind, smart and takes his time to explain everything. He knows we’re a team and he is as hopeful about this working for Robert as we are. 

Another neurologist came into the room with Dr. K and she introduced herself as a fellow. She was learning about the DBS which I didn’t mind at all. They are part of an award-winning teaching hospital and I am thrilled to have these talented doctors and students as part of Robert’s care team. 

Dr. K explained the DBS has three settings and delivers a constant electrical current. It starts out on setting A which delivers a low electrical current, then after a month (if it’s not yet controlling the seizures), the patient (or caregiver) can move it to setting B which delivers a little more of an electrical pulse. Setting C is the highest setting and that is where most patients end up but it takes three or four months to get there after the initial activation. 

Dr. K activated the device, showing me the different settings and explaining some side-effects to watch for (depression or tingling on one side of the body). He explained how to control the device at home and said I could increase it to setting B after one month if Robert seemed to be tolerating it okay. 

He said another MRI may be needed to be sure the electrodes are still placed correctly but he didn’t think that was necessary just yet. 

It seemed simple enough to activate and control. It’s basically an app on a phone so I was comfortable with it once I figured out how to open the app and he took me through the steps to control it. 

How will we know it is working? If Robert has fewer seizures, it is working! Simple as that. Robert’s seizures come in clusters every two to three weeks. If the clusters don’t come, it’s working. If his seizures come as frequently as usual, we move to setting B. We left the office feeling very hopeful. 

This is going to work! I just know it. 

The next day Robert had a seizure cluster. I brushed it off since he was “due” (his seizures are pretty regular so I didn’t find it unusual that he had any). 

The day after he didn’t have any. Phew! 

The day after that, he had another cluster. Then another the next day.  

He continued to have seizures almost daily for six days after the DBS was activated. 

This was not a side-effect anyone expected. 

I was in contact with Dr. K’s office and was told on the sixth day to turn it off. 

It was heartbreaking to deactivate it. Robert had gone through so much (heck, we all had) to be able to use this device and now it is causing him more seizures. Knowing he had the electronics in his head and chest and it was just sitting there, not being used, going through all the surgeries and MRIs and appointments . . . 


I turned it off but did so while hoping the seizures would continue. I’ve never wished for Robert to have seizures but just this once I wish they would continue. I was hoping the seizures were caused by something else and that it was just a weird coincidence they happened after the DBS was activated. 

No such luck. 

The seizures stopped. He’s had a few (his normal) since then but nothing like the daily clusters he was having while the DBS was on. 

We had planned a long weekend beach vacation for later in the month and made the most of it. It was what we all needed after such a stressful and disappointing process the last few months. 

On the last day of our vacation Dr. K messaged me and asked if we wanted to try again with a different setting. Yes! I am hopeful there is a setting that Robert’s brain can tolerate. Maybe there’s a setting below A that we can start with instead. Maybe we need to leave it on longer than a week and let his brain adjust. Maybe we need another MRI to make sure everything is still located where it’s supposed to be. 

Maybe there is still a chance for this DBS to work for Robert. 

Today we go in to try again. I have more questions. Robert will have more jokes. We know we have an army of people saying prayers, sending well wishes and hoping for the best for this second try. 

Hope and support are what we are hanging onto. 

Sunday, August 15, 2021

The Deep Brain Stimulator for Epilepsy

It was a whirlwind of activity after making the decision in May to move forward with the Deep Brain Stimulator (DBS) for Robert. 

Sure, we started thinking about it three years ago but once we made the decision this year it was a flurry of pre-op appointments, MRIs, more MRIs, CTs, surgeries, and post-op appointments. 

I didn’t expect as many pre-op appointments so consider yourself warned if you decide on the DBS. Robert also ended up having three MRIs which is two more than we planned for. Robert cannot lay flat on his back without pain (which I mentioned when making the appointment) but apparently that was interrupted as “oh, I’m sure he’ll be fine.” 

Well, no. That means he will not be able to lay still. Really. He was squirmy throughout the entire procedure which made it last even longer than it should have. It also didn’t give the neurosurgeon good enough pictures to map the DBS placement. 

We tried for MRI #2 (with sedation this time) but Robert fell at home the day of his appointment and was so weak I couldn’t get him in the car to get to the appointment. Through a herculean effort by the surgery and MRI schedulers, they got him in two days later. I arranged for a transport van so I wouldn’t have to count on Robert’s ability to get in and out of the car. 

They tried MRI #2 with a light sedative which didn’t work so they had to completely put him under. Finally, the MRI was done! 

Surgery was scheduled for the following Monday morning (again, we relied on a transport van and ended up using a couple of different transport services for all of Robert’s appointments and surgeries just to ensure we got to each one). As Robert was getting prepped for surgery the surgeon came in and said the MRI wasn’t done properly (the surgeon ordered three particular scans and only two of them were done). He couldn’t place the DBS without another MRI and he wasn’t sure if the MRI could be done that morning because of all the moving parts (holding a surgery room for post-MRI, getting the anesthesia team on board to put him under for the MRI, and figuring out if there was even an MRI machine available!). 

It's 6:00 a.m., it’s taken a huge effort to get Robert to this point and now we may not be able to do the surgery today? I wondered if this was a sign. Maybe we shouldn’t do the surgery after all. I stared dumbfounded at the surgeon. A few tears of frustration leaked out. He was very apologetic, the nurses said they never had seen this happen before, everyone said how the MRI team never makes these mistakes and it was unheard of to see this happen. 

I get it. Mistakes happen. The whole MRI situation was chaos anyway so maybe the techs were overworked that day trying to squeeze us in and just got sloppy. Whatever the reason, the end result was Robert had to get another MRI before he could get his surgery. 

The surgeon was impressively calm talking to me about the situation but I could tell he was on a mission. I don’t know what he did or how he did it (or if anyone got fired over this ordeal) but he made the MRI happen. Robert was rushed off to get an MRI with the plan to do the surgery immediately afterwards. When Robert was wheeled away, the surgeon told me he was not even sure the hospital would hold open the surgery room for as long as he needed but he was going to give it a shot. 

That was surgery number one. The MRI got done (properly), the surgery room was held open and Robert got part one done of the DBS implant

I am incredibly fortunate that none of this rattles Robert. He doesn’t worry, he just always goes with the flow with a smile for everyone no matter what is going on around him. 

Usually, patients are in the hospital for just one night after the first surgery. Robert stayed three nights due to chest congestion and his white blood count going up. I was worried about aspiration pneumonia and insisted he get put on antibiotics before it got out of control but the doctors wouldn’t do it. (I was so insistent that a nurse practitioner put him on them for a day before the doctor overrode her.) 

The DBS is implanted in two stages. The leads are placed in the brain during the first surgery and the battery is placed in the chest and hooked to the leads during the second surgery. 

The second surgery was much less eventful – oh, well, aside from the earthquake that happened during it. Apparently, we felt it in the waiting room, the nurses felt it during surgery but the surgeon didn’t notice it at all. Because, apparently, he has one setting: cool as a cucumber. 

The last piece of the DBS process is to have it activated. After Robert’s second surgery, we were sent home with a box containing everything needed to activate the device. The surgeon doesn’t activate it as that’s done in the neurologist’s office. The appointment should be within a week of the second surgery but ours was six weeks out. The surgeon was going to try to work some more magic and get us in sooner with Robert’s neurologist. 

Between the surgeon’s message, my calls and the luck of the neurologist not being called for jury duty, Robert was able to get an earlier appointment. 

DBS activation was on the books! 

My next post will be about activating the device but I also want to answer any questions you might have about the Deep Brain Stimulator. I’m not an expert, of course, but as a caregiver who has gone through this with my brother I can possibly address some concerns or questions you have if you are considering the DBS.