Robert's Sister

Epilepsy Awareness Month: Loneliness and Friendships

2025-11-10T21:00:00.000-08:00

We had a wonderful dinner with friends on the first day in Southern California for our Epilepsy Awareness Day trip. We can only see them a few times a year so our get-togethers are non-stop talking and laughing and warm hugs! We planned to finally take a picture of the four of us but completely forgot with all the chatting, laughing and eating way more than we should!

This made me think of how social Robert always was. He had a wonderful group of friends in school, was active in his church as an adult and then, when he lived with us, had so many friends at his Day Program and eventually at his facility. He was very social his whole life.

But Epilepsy can be lonely and isolating. Stigma still exists and people can also be uncomfortable around seizures. People with Epilepsy may feel embarrassed when they have a seizure in public leading them to hesitate to go out with friends and family.

Anti-seizure medications can also contribute to these feelings. They can alter a person’s mood or make them drowsy which affects if a person wants to socialize.

A logistical reason for loneliness is some people with Epilepsy cannot drive. Sure, it’s great to have ride-share options these days but that costs money so it’s not an option people can use all the time. Public transportation can be available but that doesn’t lend itself to a spontaneous visit with friends and options in rural areas can be limited.

So Epilepsy can be lonely.

The Epilepsy Awareness Day at Disneyland Expo is not only about education but about community. Seeing people walk into the event I can tell they feel like they have found their people. Attendees have hope for seizure control for themselves or their loved one and with so many hospitals attending and doctors giving seminars and non-profits sharing information, the options are plentiful (although a bit overwhelming).

Richard and I and one of our other co-authors, Gincy, brought our 365 Caregiving Tips books to the event and thanks to a sponsor, NorthShore Supply, were able to give away our “Caring for Yourself” book at a table generously paid for by Other Brother.

The individuals and families stopping by were all looking for answers and support and they found it at this expo. Their strollers, wheelchairs or bags were overflowing with pamphlets, books, and trinkets and flyers from all the vendors.

People attended with their support group or their significant other or the entire family. It was clear how much people cared for each other and how they all wanted the best for their loved one. So many visitors at our table shared their story of medication changes, surgeries, seizures, and their own feelings of overwhelm.

Yes, Epilepsy can make a person feel lonely but people with Epilepsy can also be resilient and compassionate and caring and have terrific support systems. Robert loved attending these expos and it was weird not having him there this year. He was always the greeter at our table and loved to talk to the visitors at the table and even the people walking by! He would just talk louder if people walked by without stopping to chat – he assumed they just didn’t hear him!

Robert was our social butterfly.

Epilepsy Awareness Month: Excited for EADDL

2025-11-08T19:48:00.000-08:00

Richard and I are excited! We leave tomorrow for Epilepsy Awareness Day at Disneyland! We started going to this event in 2014 and Robert went with us. I remember being nervous about traveling with Robert but it was easier than I had feared (isn’t that always the way?) and we kept going back!

We couldn’t take him in 2023 because he was in the Skilled Nursing Facility and physically it would have been too tough for us. That was the year I had two cataract surgeries and two Mohs surgeries and I just didn’t have the energy it would take to care for him.

I really missed not bringing him that year. Last year only Other Brother attended the event because of that darn heart attack Richard had! (Although, frankly, I am relieved that if Richard had to have a heart attack he had it in front of an emergency room instead of in Disneyland!) Timing is everything.

This year we are going and we couldn’t be more excited. Our daughter, her husband and our grandson are going and Other Brother and his wife will be there too! Robert will be with us in spirit (and in photo form) so he can join us for our traditional photo in the Tea Cups!

I am grateful for the memories of visiting Disneyland so many times with Robert. He enjoyed every minute of it even though he always, always, always had seizures during the days in the park. Unfortunately, excitement was a reliable seizure trigger for Robert and it is pretty much impossible to keep someone from getting excited about Disneyland!

I wondered if taking him to Disneyland was worth the seizures. I was always considering Robert’s quality of life when I cared for him and even though the seizures were rough on him, I just couldn’t take that joy away from him.

We did our best to manage the excitement. The first year we went, we counted down the days on a chalkboard in his room. Two days before our flight was scheduled to leave, Robert ended up in the emergency room with a cluster of seizures that wouldn’t stop!

We never did the countdown to the trip again. In fact, Richard and I would be super low-key and casually mention we were going on a trip to Disneyland only when we were close to the departure date. We did our best not to show too much excitement when we entered the park but, I admit, that was tough.

Robert never ended up in the hospital again due to all the seizures (at least not around Disneyland time) and I have plenty of photos showing Robert smiling from ear to ear the whole time we were there.

I definitely think it was worth it.

Richard said today that going to Disneyland without Robert will be strange. Yes, it will be different and Robert will be missed but I am so happy we will have family there to enjoy it with us!

Epilepsy Awareness Month: Interview with Robert

2025-11-07T20:37:00.000-08:00

In November 2012, I did several interviews with people for Epilepsy Awareness Month and Robert was one of those interviews.

I’m pretty tired tonight so instead of writing a whole new blog, I want to share that interview with you. I hope you enjoy reading it as much as I did! (The original post can be found here.)

Robert’s Sister: How does it feel to have epilepsy?

I don’t want to have epilepsy. I want it to stop completely. That’s one of the main reasons why I had the brain surgeries.

Robert’s Sister: How did your family treat you when you were growing up?

They treated me pretty good. I tried every medication but nothing was ever able to stop me from having seizures. They kept an eye on me.

Robert’s Sister: Did the kids at school treat you differently because you had epilepsy?

I had a lot of nice friends when I was in high school. A lot of them were handicapped also and we went to gym. In the back room we were able to play pool and I even taught some of the guys how to play pool. Some didn’t know how to play right so I taught them correctly. They really liked it too and thanked me a lot for that too. My classmates were nice to me and nice to each other.

Robert’s Sister: Do you think the medications affect how you feel?

It doesn’t hurt me any. When I was younger, I was still having seizures at times before the brain surgery. I always controlled my mood. I thank God for that.

Robert’s Sister: How do you feel about having brain surgeries? Do you think they helped? (Note: Robert has had two brain surgeries)

The brain surgeries did help a lot. The first one was January 4, 1990. I remember I was awake during the brain surgery. The surgery was ten hours long and I was awake and the doctor showed me 3 x 5 cards, back and forth. He had me move my fingers and toes.

Robert’s Sister: What made you want to be involved in research studies? (Note: Robert was involved in a research study for the Deep Brain Stimulator at UCSF as well as a variety of new medications)

To see if they would stop me from having seizures or not.

Robert’s Sister: How did it make you feel when Dad said he didn’t want you to participate in the research studies? (Note: Our dad didn’t like the idea of Robert participating in research studies)

I felt like Dad didn’t want to help me. I believe I did the correct thing.

Robert’s Sister: How do you feel about living in a care facility?

It’s okay. The people are nice there.

Robert’s Sister: What is your favorite memory?

I like to remember Mom. I still remember her in my mind. It’s too bad she had cancer in her stomach and passed away early. (Our Mom passed away from liver cancer in 1999 when she was only 56 years old).

Robert’s Sister: Do you ever wish you didn’t have epilepsy?

Yes. I remember when I was 15 I was at Dad’s house in Modesto. Dad took me to a friend’s house and we went to the Jacuzzi for a while. I told him I was going to do a couple of laps in the pool and went to the deep end. A seizure hit and I fell in. My friend saw me lying at the bottom of the pool and told my dad. Dad dove in and he was still in his work clothes. He dove in and pulled me out. The paramedics had to start my heart again and the Lord told me it wasn’t my time to die yet and I was here for a reason.

Robert’s Sister: What do you think that reason was?

To help other people.

Robert’s Sister: What do you want people to know about epilepsy?

Epilepsy is a seizure disorder. A person could have a seizure and fall down. They may injure themselves also. I remember I cracked open my head 36 times in the past. (Note from Robert’s Sister: he wears a helmet now; probably about 35 times too late).

Robert’s Sister: Is there anything else you want to say?

I thank God for saving me in everything so far.

Robert’s Sister: I have one last question and it’s a really hard one. You better take an extra drink of your shake for this one. Who is your favorite sister? J

(Laughing) – You! (More laughter) No, George Washington! Only joking! (Still laughing) You’re my favorite sister. My only sister also.

Robert’s Sister: Many thanks to Robert for answering my questions!

Epilepsy Awareness Month: Surgical Options

2025-11-06T20:38:00.000-08:00

Robert’s Epilepsy was considered uncontrolled, otherwise known as refractory or intractable. I always called it intractable but either is correct.

Epilepsy is classified as intractable after two anti-seizure medications fail. Robert’s seizures continued after several (and I mean several) anti-seizure medications and combinations of medications failed. This happens for approximately 30 percent of people living with Epilepsy!

Medications aren’t the only treatment option for Epilepsy though. There are several surgical options and Robert tried several of those as well. The Epilepsy Foundation has some good information about the different kinds of surgeries for Epilepsy so I won’t go into all of them.

I do want to tell you about the surgeries Robert had. Robert was willing to try anything to control his seizures – even surgery.

Shortly after Robert was diagnosed, Robert was about seven years old and our parents wanted him to see the best neurologist in the world. That seemed pretty far-fetched since, believe me, we did not have Kardashian money, but our parents did love us kids so I can’t really blame them for wanting the best for Robert.

They found a neurologist and was able to get an appointment. In Switzerland!

I always wondered who they had seen and while searching for photos after Robert died, Rich and I found a piece of paper with the neurologist’s name! How crazy is that?! That surgeon said he could not do surgery on Robert but I looked him up and it turns out he really was the best! He was chosen as “Neurosurgery’s Man of the Century” in 1999.

I need one of those shocked face emojis right about now.

Robert didn’t have surgery when he was seven years old but he did have two Brain Resections in his twenties. They helped some in that he no longer had Tonic Clonic seizures but he did still have seizures.

Robert also participated in a trial for the Vagus Nerve Stimulator and then the Deep Brain Stimulator.

2021 DBS Surgery

Once the Deep Brain Stimulator was approved by the FDA to treat Epilepsy, Robert had that implanted. It had shown promise when he was in the study so we had hope it would help him. Robert had the DBS implanted in 2021 and, if I understand it correctly, it works better and better over time. That seemed to be the case for Robert as we thought his seizures were decreasing! His wonderful neurologist and I were very hopeful for the future! (Unfortunately this last visit to the neurologist was three days before Robert died.)

Our hope was that Robert could reduce or eliminate some of his anti-seizure medications since all the side-effects of the medications are just awful. For Robert, the worst was the Depakote! That was brutal on his liver and he was consistently living with high ammonia levels making him pretty drowsy.

While Robert’s surgeries weren’t a miracle cure for him, they can help and they did help him. I personally know (okay, I know her through social media) at least one young lady who had a major surgery for her Epilepsy and it stopped her seizures. She’s been seizure free for many years now. When that happens, it is a miracle!

And, as you know, we are all about miracles around here!

Epilepsy Awareness Month: Let’s Not Judge

2025-11-05T20:21:00.000-08:00

It’s hard to believe there is still stigma surrounding Epilepsy, even today and in many cultures. The myths surrounding Epilepsy are outlandish and absurd and could easily be ignored if they weren’t still perpetuated today, causing real harm to those with Epilepsy.

Robert experienced judgment from others because of his Epilepsy.

Robert senior picture

I shared a story at Robert’s Celebration of Life about him having seizures at school (middle school if I remember correctly) and kids making fun of him. I remember picking Robert up from school once because he had a seizure and had wet his pants. Robert would sometimes become incontinent with his seizures so I can only imagine the embarrassment he felt when it happened at school or other public place.

I don’t know if it was because of that instance or another time he had a seizure in class but Robert knew the kids were making fun of him. Robert didn’t let that moment of embarrassment deter him though. He asked the teacher if he could talk to the class about his Epilepsy and the seizures. Thank goodness that teacher said yes because it was so important to Robert. He told me that story multiple times and was so proud he was able to talk the kids who made fun of him. How brave of him to do that! As for me, I couldn’t talk in front of the class without turning bright red!

People sometimes make fun of things they don’t understand. Sometimes people judge others when they don’t understand something.

Goofing around

One time, our family was at a lunch when Other Brother Rich was in college in the Bay Area. It was a big deal that our brother went to Berkeley and visiting Rich was a treat for all of us.

We were at a crowded café, nothing fancy so the tables were pretty close together. People were coming in and out and all the tables were full during the noon rush. Robert had a seizure during our lunch and fell to the floor. I actually never got used to seeing Robert have a seizure whether it was a Tonic Clonic or Focal Impaired seizure. It was difficult for me to see him like that. If I never got used to it, I’m sure others were uncomfortable, especially if they had never seen one before.

That day, though, as Robert was having his seizure, I overheard one of the patrons on the way out the door say something to the effect that he was probably on drugs.

Oh my gosh, that infuriated me. When I relive that in my head now I imagine following them out of the café and really giving them a piece of my mind. (Yes, the movie version of this scene in my head has me cornering them outside and screaming at them!) I am sure I didn’t do that but boy did I want to!

(The things we think of after a situation is over! Or maybe that’s just me.)

Robert recovered that day. I probably didn’t scream at anyone and I’m sure we all finished our sandwiches and enjoyed hanging out with Other Brother.

I think about this from time to time and really hope that the person who mistakenly thought Robert was a drug addict eventually learned about Epilepsy and regrets his comment. I don’t want him to beat himself up too much about it because maybe he just didn’t know. Maybe it looked scary to him (it was scary to me!) and he didn’t know how else to react.

He also could have just been a jerk but I like to think the best of people.

None of us knows everything about everything so we really shouldn’t judge ourselves for making stupid mistakes before we know better.

It’s making sure we get to the “knowing better” point that’s important.

So let’s know better and not judge when we see something that’s different or makes us uncomfortable.

Trip to Santa Cruz

Epilepsy Awareness Month: Living Life

2025-11-04T20:51:00.000-08:00

Life with Epilepsy is not just about seizures, doctor appointments and medications. People with Epilepsy – even with uncontrolled seizures – live their lives! They hang out with friends, go to family events, ride horses, travel, and volunteer.

They bowl, golf, get married, write poetry, watch baseball and tell jokes. They graduate from high school and go to college. They join a church and become involved in bible study. They do their shopping and cook dinner.

Epilepsy doesn’t stop people from living life.

The effects of uncontrolled seizures on a person is wide-ranging, though, and can be devastating. Some may need round-the-clock care but they are able to give their mom the sweetest hug or a sly smile. Others live independently and some just need a modest amount of help.

Robert lived a full life. He loved to travel with our dad and would remind me and Other Brother (and anyone else within earshot) that he had been to Hawaii five times. He went to Disneyland more times that and enjoyed trips to Las Vegas too!

Robert made friends everywhere he went. He had friends at school, at church, at Day Program and at the Skilled Nursing Facility. There was something about Robert that everyone loved. Maybe it was the dimples and curly hair. Maybe it was his never-ending jokes about drinking whiskey and going to New York City and then laughing at his own absurd joke. Maybe it was because he was so darn polite!

Robert had uncontrolled seizures his entire life yet did all the things I listed above. Except write poetry – I don’t think he did that. Oh and he watched football more than baseball. Plus, he was married but it was annulled after just a few days (turns out his “wife” wanted a honeymoon to Hawaii more than she wanted to be married).

Robert definitely lived a full life. He lived a life with joy (although, don’t get me wrong, he could get pretty darn cranky and stubborn but we can talk about that another day).

For now, let’s remember that there is so much more to a person with Epilepsy than just the disorder.

Epilepsy Awareness Month: The Seizures

2025-11-03T18:51:00.000-08:00

I wanted to talk about the different kinds of seizures Robert has had throughout his life but then I started to review his seizure logs. I kept track of his seizures since I started caring for him so we could show his neurology team at Robert’s appointments.

Snapshot of Robert's seizure log

Before I started caring for Robert he would also keep a log which I have in a box around here somewhere.

The doctors loved the log since they were able to understand the sheer number of seizures Robert had and I loved it because I was trying to track down his seizure triggers. I even created a spreadsheet for weather stats but that proved to be too time-consuming.

The spreadsheet included the time of the seizure, its duration and Robert’s behavior pre and post stages (prodromal and postictal) and during the actual seizure.

Robert’s seizures were Focal Impaired Awareness (aka, Complex Partial) seizures. If he was standing, he would fall. If he was on the toilet or in a bath chair, he would sometimes lean over and fall if someone wasn’t there to catch him. Seizures in the bath chair were even more of a problem because he would move his head back and forth and lean to one side, sometimes making him slide down off the chair unless one of us could hold him up until the seizure ended.

Robert’s head always turned to the right during a seizure. This is why when he was unresponsive in June and had his head turned to the left and upward, I knew it wasn’t a seizure. I thought maybe he had a stroke but, as it turns out, it was due to his first bout of pancreatitis.

As a child, Robert would stare off into space. He described these seizures as being able to see cartoons in his head and the colors, “red, blue and green.” Teachers thought he wasn’t paying attention but he was having an absence seizure.

By the time he was a teen, he had Tonic Clonic seizures (aka, grand mal/convulsive) and lose control of his bladder. These are the seizures typically portrayed in movies but they are one of many, many kinds of seizures.

After Robert had his brain resections in his twenties, his seizures were the Focal Impaired Awareness (aka, Complex Partial) kind.

When I took over his care and he lived with me and Richard, these were the seizures he had. He was still walking so we had to make sure he wore his helmet when he was standing and I made him start wearing it even when sitting at a table since, once, he fell sideways onto the floor during a meal.

We were always trying to keep up with (and prevent) the numerous ways Robert could get hurt. The helmet definitely saved his head on numerous occasions.

Side note/rant: Robert was on Medicaid and the helmet was medically necessary. In fact, if he didn’t wear it he would end up in the hospital needing stitches! (And he did – he briefly lived in a facility and did not wear his helmet when walking around and had a seizure and cracked open his head! He required several stitches!)

Back to my rant: Obviously, not wearing a helmet was very costly. However, Medicaid always denied the purchase of a helmet. I found it so ridiculous they wouldn’t pay $400 for a fitted helmet yet would pay thousands of dollars for a head injury – stitches, CT scan, ER visit! We paid out of pocket for the helmet but I always worried about those that didn’t have the means to do so and the kids or adults who continued to sustain head injuries when a helmet could have prevented them.

It makes no sense and frustrates me no end.

Out of curiosity today I reviewed his seizure logs. I was curious how many seizures Robert had. Even though I kept these logs and counted the seizures monthly to see if they were waning or getting worse with medication changes I never thought to count how many he had in the time that I cared for him. Keep in mind, these logs are not completely accurate because I was not looking at Robert 24/7. Sometimes his seizures would only last 2 – 3 seconds so capturing all of them would be impossible.

Just because I counted.

Robert had clusters of seizures so some months he had dozens. Every year he had between 200 – 500 seizures. I logged over 3,000 seizures over a ten year period. Some people have fewer; some more.

This is why we continued to find the right medication and dose for Robert. This is why we had the Deep Brain Stimulator installed. This is why he had his brain resections.

Approximately 30 – 40% of people with epilepsy have uncontrolled seizures. Getting complete seizure control is something 1.5 million adults in the US are still striving for.

That is a grim statistic but supporting epilepsy research, sharing information about epilepsy, being involved in various organizations helping families dealing with epilepsy and even learning seizure first aid are all ways to support those with epilepsy.

Thank you for reading and for your support of Robert and our family through the years.

Robert in a postictal phase

Epilepsy Awareness Month: Why the Decline?

2025-11-02T19:44:00.000-08:00

Robert has had Epilepsy since he was a child and uncontrolled seizures his entire life but he wasn’t always in a wheelchair. He was an active kid (“hyperactive” was actually the label put on him). Robert had numerous seizures which made him fall but didn’t start wearing a helmet until his twenties.

I don’t know why.

Looking back, the kid should have not only worn a helmet but been in bubble wrap.

Robert’s injuries were extensive: numerous concussions from falling on concrete, a broken shoulder due to a fall, a broken jaw at one point, and even severely burned his arm when he fell against a hot lamp bulb when he was alone. He miraculously survived a drowning when he had a seizure while swimming and I vaguely remember him getting hit by a car but the details are fuzzy on that one.

I mean, seriously. We should have looked into the bubble wrap option.

Robert was in his early forties and living with his companion, Judy, when we determined it was too unsafe for him to live alone. (Caregivers question themselves all the time about whether we should have stepped in earlier than we did. I am no exception but I stepped in when I did and, as my friend Kathy says, it was just the right time.)

Robert’s neighbor told Other Brother (Rich) and I that Robert was falling more than usual. There were some other things happening too and he ended up in the hospital and then a Skilled Nursing Facility for a while. That’s when we decided he couldn’t go back to his house and I took over his care.

Robert was still walking at this point but eventually needed a walker because he wasn’t very steady on his feet.

After he moved in with me and Richard, it was clear that Robert needed to wear briefs all the time. He couldn’t make it to the bathroom on time through no fault of his own. He didn’t move that fast but also his brain wasn’t telling him to get to the bathroom as quickly as it used to.

The mobility decline snuck up on us until one day Robert couldn’t move his legs. He just couldn’t get them to move. He tried. I could really see him thinking about it but his legs (particularly the right one) wouldn’t budge.

Robert landed in the hospital since this was such a dramatic change and he was there for a couple of weeks while they tried to figure out what was going on.

The neurologists thought he possibly had Cervical Disc Disease with Myelopathy. Eventually, however, his wonderful neurologist that specializes in movement disorders said he had Parkinsonism (not Parkinson’s disease but, from a very basic understanding, it is just the movement disorder part of Parkinson’s). She put him on Sinemet which did help his movement. She also thought his decline could be due to CTE (Chronic Traumatic Encephalopathy) which is a degenerative brain disorder caused by repeated concussions.

It can’t be definitively diagnosed, though, until an autopsy is done.

Robert was always one to sign up for various studies whether it was for a new anti-seizure medication, surgery or medical device. He wanted to help others but also wanted his seizures to stop so he always signed up for trials. It kind of drove our dad crazy but he kept signing up for these things. Robert even tested the Deep Brain Stimulator before the FDA approved it for use in Epilepsy (it was actually first approved for use in Parkinson’s Disease). The DBS trial was showing that it helped reduce his seizures but, unfortunately, it became terribly infected and he had to have it removed.

Several years later, once the DBS was officially approved, he was able to have it implanted again and it was definitely helping with his seizures.

Given the suspicion of CTE and Robert’s willingness to participate in scientific trials it really was a no brainer (sorry, pun intended!) to have Robert’s brain autopsied after he died.

I wasn’t sure how to go about this but I had read about Dr. Bennet Omalu who first discovered CTE in football players. I knew he had connections to UCDMC where Robert was hospitalized so after Robert died I looked up his website and contacted him. He responded within just a few hours and said his assistant would contact me. She did and, after talking to Richard and Rich we made the decision to have Dr. Omalu autopsy Robert’s brain.

They made it super easy – they would get Robert from the hospital, retrieve his brain and then transport him to the funeral home. Initially, we chose a funeral home a few hours away because it is where our parents are buried but once we found out the cost of the burial (yikes!), we decided cremation would be the way to go and we could go with a funeral home in our area. Richard’s family had used the local option for many years and they were family owned so it was a easy choice.

I let Dr. Omalu’s office know about the change only to find out Robert was already on his way to the original funeral home! There was some miscommunication with this funeral home who apparently had one department who knew we had declined their services but the message hadn’t made it to another department. Robert’s driver was literally ten minutes away before getting the message that he had to turn around and bring Robert back.

Rich and I joked that Robert had a field trip to see our parents’ graves one last time. I’m certain he enjoyed it!

The results of the autopsy won’t be available for several more months but it will be interesting to get the results. Did Robert have CTE or was his decline due to some other neurodegenerative disease? Or was it all because of the lifelong, uncontrolled seizures?

I told his neurologists what we were doing and that I would send them the results. They were very grateful and told me how generous it was to do the autopsy.

I felt we really didn’t have any other choice. I wanted to honor Robert’s mission to educate others about Epilepsy and I wanted to find answers that might help others who have had years and years of uncontrolled seizures.

I am grateful to Robert for this one last gift.

Epilepsy Awareness Month: Continuing Epilepsy Education

2025-11-01T17:30:00.000-07:00

It’s November so that means it is Epilepsy Awareness Month. In past years, I have shared facts about epilepsy, interviewed people with epilepsy and spotlighted organizations that help people with epilepsy and their families. I have shared what life with epilepsy has been like for Robert. It was important to Robert to educate people about epilepsy and I wanted to help him fulfill that passion – that life goal of his.

Robert is gone now. (That is still hard for me to believe.) As most of you know, Robert died on September 28. Not from seizures or Status Epilepticus or SUDEP (Sudden Unexpected Death from Epilepsy); not even from Aspiration Pneumonia which I thought for sure would be what did him in. (After all, that’s what the doctors told me in June when they were pressuring me to let them insert a feeding tube which I adamantly refused.)

No. It was none of that.

It was Necrotizing Pancreatitis caused by gall stones of all things (which were found in June but treatment for that was not a high priority at the time because he was in such bad shape from aspirating after vomiting from the Pancreatitis.)

Nothing related to Epilepsy.

I suppose the argument could be made that the Pancreatitis was allowed to get so bad because somehow (maybe due to all the anti-seizure meds he was on) Robert rarely experienced pain. It was always so ironic to me since my husband, Richard, has dealt with extreme chronic pain since I met him and Robert never seemed to feel pain. I always wished that somehow their pain centers could balance each other out and Richard would feel less pain. (Although now that I write that down I certainly didn’t want Robert to experience more pain so my balancing out the pain centers idea kind of falls apart.)

Well, a quick google search actually says it is normal not to feel pain while on anti-seizure meds. This has just always been a theory of mine based on Robert’s experience through the years but apparently that is an actual side-effect of some of the medications.

I’ve heard that Pancreatitis is extremely painful but Robert never complained about his stomach hurting. He didn’t act like he was in pain. He flinched a little in June when he was hospitalized and they pressed on his stomach but nothing after that.

Robert casually mentioned at a doctor’s appointment the week before his last hospitalization that his head hurt but he was not acting in pain at all. Looking back, I suppose this could have been “referred pain” but this didn’t occur to me or anyone else. He was actually acting more alert than usual so there was no reason to suspect he was in pain or that anything was “off.”

That last week he was alert, playing bingo and talking and laughing! I was actually feeling so good about how he was doing! Fewer seizures, less sleepiness – heck, his neurologist even reduced one of his meds and talked about eventually seeing Robert every six months instead of the usual every three month visits!

This was all so promising!

Obviously, though, there was a problem because four short days later he was in the ER with septic shock from this necrotizing pancreatitis!

That’s why this was such a shock.

As a caregiver, it is impossible to know what is going to come at you. You can say the same thing about dealing with epilepsy. Medication side-effects, accidents, concussions, surgeries, and an eventual decline from all of it. It can be unpredictable, brutal and heart-wrenching.

But there can be some really good days. Even good months and I am thrilled to look back on Robert’s last month and be able to say it really truly was super, amazing, excellent and great.

I’m going to do my best to write something about Robert each day this month. Epilepsy is different for everyone but I hope some of this information will help others. I hope by talking about Robert’s experience it will help others with epilepsy and their caregivers.

I hope to keep going with Robert’s goal of educating others about epilepsy.

And I suspect it will keep Robert close to me and his friends, family and “fans.” After all, he did love to be the center of attention!

When the Miracles Run Out

2025-09-29T16:45:00.000-07:00

Our family has been blessed with miracles for many years.

Just looking at Robert’s run, he had a seizure while swimming when he was 16 years old and somehow survived after being in a coma for three days. He survived terrible falls (including one onto a lamp which burned his arm while he seized for god knows how long), concussions, an infection in the Deep Brain Stimulator when he was in a trial for it at UCSF, countless seizures and seizure clusters, two rounds of COVID pneumonia, a ridiculous amount of aspiration pneumonia, and, as recently as June, a severe case of pancreatitis brought on by gallstones.

Along with being the Bingo King he was the Comeback Kid.

Always pulling out a miracle.

When Richard had his own miracle of surviving a “widow maker” cardiac arrest, I started to feel a little guilty about our abundance of miracles. (Of course, if you know me, this comes as a surprise to absolutely no one.) I definitely got the guilt gene.

I loved the miracles though and was so grateful for each and every one. Logically, I knew that one day the miracles would run out. Robert has been so sick that doctors would pull me aside and solemnly tell me “I’m a little worried about him.” I told them that he always pulls through. I would worry too but would also allow myself to remember the miracles.

Robert always had one up his sleeve!

This last week, Robert seemed like himself. We went to his neurology appointment and his doctor and I talked about how amazing it was that the facility only reported one seizure last month! Yes, they could have missed some but they certainly weren’t missing 40+ a month like he was having when he lived with us just two years ago. Dr. Kennedy has worked with Robert for years, carefully adjusting his medications to see what might help without causing terrible side effects. He and I talked about how the Deep Brain Stimulator was helping along with the new medication Robert was on. Dr. Kennedy was even able to successfully slightly reduce some of the medications over the last several months, especially the ones that caused Robert’s ammonia level to skyrocket and make him sleepy.

Dr. Kennedy said eventually Robert could be moved from appointments every three months to six months! It was a great visit and it was not lost on me that this was Robert, again, being granted a miracle. The goal of zero seizures was no longer an impossible dream! It was within sight!

On Thursday, Robert enjoyed playing the card game of Kings in the Corner (his favorite). Pattae, his wonderful caregiver, shared that he won multiple times which was actually pretty typical.

Friday morning, though, I got a call that he was being sent to the Emergency Room. I was completely confused because I had seen him a couple times already that week and he was fine. Didn’t seem to be sick at all. I can usually tell when something is working on him but there was nothing.

He was sent to the hospital unresponsive and by the time I got to the hospital, he was intubated and they were working to stabilize his blood pressure. They checked for a stroke, they checked to see if he was in status epilepticus, they ran so much bloodwork they ran out of good veins in his arms and had to use his leg.

Robert quickly landed in the ICU, ended up with four “pressors” to get his blood pressure up and started with one broad spectrum antibiotic but ended up with four!

He got so sick so quick. He was in septic shock.

They finally figured out he again had pancreatitis. This time, it was “necrotizing pancreatitis” which in normal person’s lingo is “no bueno.”

I followed along in his chart with the lab results and consulted Dr. Google or Chat GTP when I had a question. I looked up one of his liver enzymes which was in the thousands and was met with “you must have a typo.”

Family and friends came up to see him, pray with him and say their goodbyes, just in case.

Both nights he was in the ICU I was called to come to the hospital since things were not looking good. The second night, the doctor told me that he was not responding to the medications and his belly was swelling (surgery had been consulted and that was not an option because of how sick he was) and his organs were failing.

Robert had remained mostly unresponsive the entire time and this was without sedatives. His body was just too tired to engage. I got one or two hand squeezes but not much more than that.

We had to make the awful decision to remove his breathing tube.

There was not going to be a miracle this time. Robert was not going to recover.

I asked for the hospital pastor to pray with him before we did anything. I’m not really religious but Robert is and I wanted him to know he was going to heaven to see our parents and step-dad and Richard’s mom.

Robert died quickly and peacefully with Richard and I by his side, holding his hands.

I have spent today notifying service coordinators, his Day Program, the transportation company we use and others and gathering his belongings from his facility and seeing Pattae. With every phone call and text and every visit with the staff at the facility, we were met with tears and the same comments: We are heartbroken. Robert was special. Robert won over cranky residents. Robert will be deeply missed. Everyone loved Robert. Robert spread joy wherever he was.

After hearing the same comments over and over, I realized Robert had one more miracle after all and that is all the hearts and souls he touched while he was here.

Miss you, little brother.

Uncertainty

2025-02-23T12:13:00.000-08:00

I’m used to uncertainty. Never knowing when Robert will have a seizure or how long they will last. Is he sick and will he end up in the hospital? Epilepsy is full of uncertainty but I eventually felt some level of comfort when I recognized Robert’s triggers (too much excitement, caffeine, getting sick) and knew that his clusters happened every 2 – 3 weeks. I took his vitals twice a day to watch for an increased temperature or pulse rate. An increased pulse rate usually indicated a seizure cluster was coming or he was getting sick.

When Robert lived with us, there was still plenty of uncertainty but I could at least help him avoid the triggers and I could look at the calendar and know that he was “due” for a cluster of seizures. I could (usually) tell if something was working on him and if he was getting sick.

Still. There was a lot of uncertainty.

And stress.

Robert is now living his best life in a wonderful facility and I have comfort they see when he is sick and can start antibiotics when needed in order to keep him out of the hospital. Unfortunately, his lungs have gotten worse over time so an aspiration event or a bout with the flu, Covid or RSV will almost certainly land him in the hospital.

There is still uncertainty how he will handle another hit to his lungs and it is still stressful but I at least know he has medical professionals watching over him and sending him to the hospital when needed. I am grateful for that.

Now there is a new uncertainty.

When Richard went into cardiac arrest in November it was a complete shock. It wasn’t on our radar at all. He came home from getting coffee and gas one Sunday morning and told me he had a little pain in his chest and some jaw pain. I had read that jaw pain can be indicative of a heart attack but he wasn’t in extreme pain, clutching his chest like in an episode of Sanford & Sons – “I’m coming Elizabeth!”. (The millennials and Gen Z’s will need to look up that reference.)

We drove to the hospital and we thought it might be indigestion. Richard even suggested going to CVS to get antacids. I told him let’s just go to the hospital – the consequences of not going are going to be much worse than if we did go and just waste a day at the ER.

When he collapsed as we walked to the ER, it was a shock. There was no uncertainty except my brain not fully realizing what had just happened. Richard was on the ground completely passed out and seemed to even have a seizure because his body convulsed a couple of times. Thankfully, Jo (the nurse who saved Richard) was arriving to work and jumped into action. She saw the convulsions and thought it was a seizure but his lips started to turn blue so she started CPR.

In that moment, I felt great uncertainty. Jo asked the security guard to feel for a pulse. He didn’t know how so I tried but just fumbled around on Richard’s wrist. I must have been in shock but remember thinking he can’t die because we want to go on more cruises! (The brain works in funny ways during stress.)

Two emergency response teams came from the hospital and put him on a gurney. I don’t even remember someone on the gurney with him giving him CPR. I only learned that happened later. I was right there so must have blocked that out. They worked on him for what seemed like forever in the ER.

At one point, one of the team noted he had been without a pulse for 35 minutes. Our daughter was there soon after all this happened and it only occurred to me much later that Richard was out for so long that in that time I had called the kids, Rachel and her husband put the baby in the car and drove to the hospital and she was escorted to the back to be with me.

That whole time Richard was without a pulse.

I was in the room because I told the doctor assigned to be with me that I had to be there with him if he passed away. At one point, I just blurted out “please don’t call it.” (I clearly watch too many medical and crime dramas.)

They continued CPR, they eventually were able to use the paddles all while no less than 50 people were packed in this ER trauma room, all doing their specific assigned tasks.

The uncertainty hung in the room.

Finally, they got a pulse. The lead doctor used a clot busting drug that is normally used in rural hospitals on people to buy them time to get to a cath lab. This was the first time they used it in this situation and it worked. It did what it was supposed to do and they were able to get a pulse.

The relief was felt by all of us.

There was still the uncertainty though. He was still out so we didn’t know what damage had been done or what he would be like when he was no longer sedated. He was sedated for four days so the uncertainty dragged on.

Thankfully, he had two stents inserted and over the next several days showed signs of improvement. He was released 10 days after the drive to the hospital where we joked about him going to the ER for indigestion.

Now, you would never know what he went through just by looking at him.

But there is still uncertainty. He wore a life vest (a portable defibrillator) for three months which would alarm if the leads were not connected properly. Waking up to an alarm such as that wasn’t good for any of our hearts!

He still has chest pain but is it from all the broken ribs or is it a problem with his heart? He recently had both chest pain and jaw pain so we went to the ER (again, the consequences are worse if you don’t go than if you do!) and he was admitted for a few days. The tests came back showing no new heart attack but no good explanation for the pain.

So we live with the uncertainty.

It’s still early in this new health journey so I am sure we will be able to manage these issues much like we learned to manage Robert’s health uncertainties.

In the meantime, we are certain in our quest for good health for both of us. We walk most every day, we are eating healthy (notwithstanding the Cinnabon I had this morning) and are grateful to have more time with each other and our family. And, hopefully, a cruise and a trip to Disneyland is in our future!

Catching Up

2025-02-02T15:26:00.000-08:00

It has been quite a while since I posted in this space.

I miss it.

I miss writing. I miss sharing my caregiving journey in the hopes of helping others. I miss the connections with those who grace me with their time reading my random thoughts and I miss the comments people share.

I miss getting these random thoughts out of my head. If you have ever struggled with a decision (and, frankly, who hasn’t) you most likely know it helps to write down your thoughts and (my personal favorite) a pros & cons list.

Writing helps sort through what is swirling in our brain and usually gives me some clarity.

So here I am. I am back! My plan is to not wait another two years to write another post.

Let’s get caught up.

My last post was about our decision to place Robert in a facility. That was in May of 2022.

We searched and searched for facilities for Robert. We used his Regional Center to help us find the right facility for him. We toured several and Robert was enthusiastic about each one.

We searched for almost two years and were rejected by every facility. “He has too many seizures.” “He is big and needs a lot of physical assistance and we have small staff.” “Our hallways are too small to accommodate any more people in wheelchairs.” “He requires too much care.”

In the middle of our search, Robert was hospitalized for aspiration pneumonia. I explained our situation to the nurses and they were very sympathetic. They suggested I discuss finding a facility with the discharge planner once Robert was ready to go home.

I did as they suggested and talked to the discharge planner. She was unable to find a facility for long-term care. I asked her to find a place for short-term rehab since he would need it after being hospitalized for ten days and she pushed back and asked if I would take him home after that. I told her if I could but that I would find out from them at that time if they could take him long-term. She said that is called “dumping” if I didn’t plan to take him home and she couldn’t risk her reputation with these facilities if I did that. At that point she refused to look for short-term rehab options and only came up with a couple of very low rated long-term options for me.

I was sick to my stomach. I would never abandon Robert but I knew I could no longer care for him. I had been trying to find a facility for him for almost two years! I was so angry that I just had him released back home – without the rehab he needed – so we were in a worse position than when we started.

Robert eventually got up to baseline with the help of outside PT and Richard and I using the lift during the worst of it.

Several months later, I needed to have a few minor surgeries so I found a Skilled Nursing Facility to keep him for a month while I had the surgeries and recovered without having to do the physical care Robert needed. I ended up needing more “respite” time because of infections after my MOHS surgeries and needing cataract surgery on my other eye. Robert ended up in the hospital with Covid that he contracted in the facility and was able to return to the facility once he recovered so he could have physical therapy to get stronger.

Robert then contracted RSV and was again hospitalized, recovered and returned to the facility again for rehab.

In the meantime, we welcomed our first grandson and have since welcomed another along with our granddaughter!

One day while cleaning out the closet at Robert’s facility, I read the care notes left for the CNAs. “Two person assist.”

Oof.

I was doing Robert’s care at home by myself (although Richard helped as much as he could) so seeing “two person assist” in writing really hit me.

I told the facility I was unable to care for Robert in our home any longer. I had the hospital discharge nurse’s words in my head: this is “dumping.”

It is pretty typical to experience guilt after placing a loved one in a facility but to think you are now doing something called “dumping” increases that guilt exponentially.

I really wasn’t dumping him. I was doing what was best for all of us and had no other option.

Robert has been in the same facility now for almost a year and a half and gets very good care. Yes, I still have to stay on them for various issues but, to be honest, he is living his best life. Everyone loves him there (residents and staff alike) and he participates in all the activities. He’s the bingo king and even has former residents sending him gifts and cards. As he likes to say, he is doing “super, amazing, excellent and great, great, great!”

For almost every day of that year and a half I wondered if I did the right thing by moving Robert to the facility. Friends and family assured me it was for the best but I still had that nagging doubt. Seeing him so happy and well cared for helped. Being able to spend time with our new grandson without worrying about Robert was amazing. Going on vacation with Richard without the worry of finding respite care was a welcome relief.

Still, my doubts always found a way to creep in.

Until Richard had his cardiac arrest.

I now really truly know in my heart Robert is in the best place for him but that it is also the best situation for us.

While I will continue to write about Robert and spread awareness about epilepsy, I will also write about the experience with Richard’s cardiac arrest and his recovery in the hopes it will help other caregivers.

Thank you again for your time and your support!

Major Changes

2022-05-29T13:36:00.000-07:00

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.

The Deep Brain Stimulator for Epilepsy: Progress

2021-09-19T10:31:00.001-07:00

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!

The Deep Brain Stimulator for Epilepsy: Take 2!

2021-08-26T07:02:00.001-07:00

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 . . .

Heartbreaking.

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.

The Deep Brain Stimulator for Epilepsy

2021-08-15T18:56:00.000-07:00

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.

Hail Mary

2021-05-31T14:39:00.000-07:00

Robert will be getting the Deep Brain Stimulator (DBS) at the end of June.

It feels like a full circle moment since at the time we started caring for him, he actually had a Deep Brain Stimulator already implanted. The DBS wasn’t yet approved by the FDA but he was in a study through the UCSF Epilepsy Center. Unfortunately, he developed an infection in the area where the stimulator part is implanted in the chest and it had to be removed. His infection was so severe that they also needed to do a separate surgery to remove the leads that are implanted in the brain and he couldn’t continue to participate in the study.

It was disappointing but at least he survived the infection. (Robert has cheated death more times than I can even count.)

Year after the device was removed I found out that Robert was in the part of the study with an active DBS and that it had helped reduce his seizures. The DBS was eventually approved by the FDA for treatment of severe epilepsy so his epileptologist suggested it as something to consider for Robert.

We talked to the surgeon in 2018 and, because it was such a hectic year with my husband’s health issues (not to mention me having a stroke that year!), I put the DBS on hold.

Robert continued to decline: he had frequent clusters of seizures, reactions to medications, hyper-ammonia from medications, worsening of mobility, functioning and memory (a result of a combination of seizures, medications and his neurodegenerative process).

The doctors tried new medications; various doses of medications; weekly physical therapy.

Richard and I tried a home caregiver (fantastic but she can’t help with Robert’s worsening physical mobility); we adjusted how we care for Robert (forget about daily baths or even street clothes); bought a new bath chair and a bedside commode. We learned tricks from the physical therapists on how to move him without hurting ourselves. We learned from the hospital nurses how to change him in bed when he was having a really bad day. We have a script for a hoyer lift.

The doctors adjusted to the decline. We adjusted to the decline. Robert continued to say he was doing “super, amazing, excellent and great” and didn’t even seem to notice a decline. (Only rarely does he get frustrated with his inability to stand or transfer.)

Robert’s support team has a deep bench (as they say in football) and we made as many adjustments as we could but, at this point, we need a Hail Mary.

I’m a huge fan of college football so I know a Hail Mary can work and it’s so exciting when it does. But that period when the ball leaves the quarterback’s hand and is sailing through the air and you don’t know if it’s going to be caught – that’s when you hold your breath and pray.

Robert has prayed his entire life for his seizures to go away.

Moving forward with the DBS is probably the last chance we will have to give him that.

I personally don’t think it will completely take away his seizures but I do hope this device will give him better seizure control. My hope is that it will allow us to reduce Robert’s medications which would then help with his mental fogginess and, maybe - just maybe - even improve his mobility.

That’s my hope. Maybe it’s more of a wish. It is probably as likely to happen as Robert’s prayers for zero seizures but I need to give him this chance.

I need to try the Hail Mary.

We will worry later about what comes next if this doesn’t work.

For now, we have one more chance for a win.

Time to hold our breath and pray.

The Vaccine with a Side of Guilt

2021-03-02T08:18:00.000-08:00

It's taken me a few days to post this because, well, I don't like being judged. (Just wait until I post this on Twitter!)

I am prone to feeling guilty about everything anyway but this might be something others can relate to so will risk the judging.

Because Richard and I are IHSS certified in California in order to care for Robert, we are eligible to get the vaccine. Richard got his appointment first but I had trouble getting one (mainly because I completed the survey incorrectly!). Rachel & Matt helped me secure an appointment when more sites opened up so I got my first shot last Friday. I definitely don't feel like I should be in the same category as "real" healthcare workers but I have a letter from IHSS that says otherwise. But, you know, guilt.

What I feel really guilty about is that Robert also got his shot. The nurse who gave Richard his shot said Robert would be eligible under the care home category (which, in California, is in the same category as the healthcare workers). We're not actually a board & care home but the nurse said he qualifies. So Robert and I had our appointments on the same day. I was prepared to hand over my IHSS letter. No one asked for it. I was prepared to answer questions about Robert's eligibility and accept he wasn't eligible but there weren't any questions.

We both got our shots. (And Robert got a chocolate shake afterwards for being such a good sport about it.)

I got a heaping serving of guilt. I feel guilty that maybe the nurse gave Richard wrong info and Robert really doesn't qualify; I feel guilty that I believed the nurse even though it didn't seem quite right; I feel guilty that we got our shots before others who need a shot got theirs; I feel guilty as a mom getting my shot before my kids get theirs (I recognize that as run-of-the-mill, typical mom guilt).

So, yeah, guilt.

I don't know if anyone else feels guilty about getting the shot before others do but I'm guessing there are a lot of us. Hoping the supply and distribution of the vaccine ramps up so everyone who wants a shot can get one.

And I can stop feeling guilty!

Looking for Answers

2020-10-11T17:05:00.000-07:00

Something is going on with Robert that I haven’t yet figured out.

During the eleven years Richard and I have cared for Robert, there has been a dramatic decline in his functionality and mobility. It isn’t a straight downward decline but more like going down a staircase. Robert is stable for a while, then gets sick and loses some functionality and goes down to another step. He stays at that step for a while then gets sick again and we repeat the process.

In the last eleven years we have gone down a lot of steps.

Keeping Robert at baseline means doing my best to prevent him from getting sick. Seems easy enough but he gets sick not just because he picks up germs from other people but because he has a swallow disorder and easily aspirates which turns into pneumonia (which leads to another step down the staircase).

Robert’s bouts of decreased mobility are usually explained by three things: the flu, aspiration pneumonia or as an indicator of seizures (the prodromal phase).

He has very specific symptoms when he is getting sick. Increased pulse rate, decreased blood pressure, lots of confusion and weakness making it difficult to stand, walk or even transfer. If he has the flu or pneumonia he also runs a fever.

When his seizures are coming he has a high pulse rate and he’s confused.

Once we figure out what is causing these symptoms we can move on to treatment (rescue meds for seizures and usually the hospital for aspiration pneumonia or the flu since that usually turns into pneumonia).

I love puzzles but this can get complicated.

Robert started having worsening mobility and confusion about a month ago. He is acting just like he always does when he is getting sick.

However, his vitals are fine. His blood pressure is lower than normal but I attributed that to his overall weakness.

Since March, Robert has left the house only for physical therapy and for his flu shot so I knew it was highly unlikely he picked up COVID-19 or the flu.

He has had more frequent aspirations and choking episodes but he would run a fever if that was turning into pneumonia.

He had seizures one day during all this but not since.

There is something wrong but it’s not his usual three issues.

His GP moved back east and Robert was not set up with a new doctor yet so I reached out to his movement neurologist. She keeps an eye on his parkinsonism and knows how fragile he is. She speculated that he may have a urinary tract infection (UTI). This would explain the confusion and the mobility issues! She’s a genius! Robert would be good as new in no time!

Catching the urine was a whole other issue but I finally got some. Just a little but enough to run the test.

That came back normal.

Ugh! I was really hoping for a UTI! (I know that probably sounds ludicrous to anyone other than a caregiver but I just wanted an explanation.) The neurologist said it is possible “this represents progression in his underlying neurodegenerative process.”

No. That’s not what I want to hear. I want to find a problem that we can fix.

I was so frustrated that we didn’t have any answers that I asked his neurologist to run bloodwork to see if he had an indication of an infection and also asked for another urinalysis. Maybe if I got more urine for the test it would be more accurate. She obliged.

In the meantime, I set Robert up with a new GP.

I took him in for the bloodwork. Later that day, I was able to get a full cup of urine! I was never so happy to see so much pee! I rushed to the lab and got there fifteen minutes before they closed. PLEASE let this give us the answers we need!

The bloodwork came back mostly normal. The urinalysis took longer but came back Friday night. There were quite a few abnormal readings but the neurologist said it wasn’t a UTI and handed me over to the new GP to follow up.

In the meantime, Richard and I have had some very difficult days trying to get him up and around (Robert is a big guy). Richard and I struggle to move Robert around. It takes both of us to get him out of bed and into a wheelchair then over to the bathroom. I’ve given up on dressing him in anything other than his pjs. (Luckily, we’re in the middle of a pandemic and wearing pjs all day every day actually isn’t all that unusual now.)

Since we can’t risk hurting ourselves we decided to try new routines and found one that is working! We are changing Robert’s brief in the morning while he’s in bed. We give him breakfast and have him drink water and juice and watch television to wake up a little bit before trying to get out of bed. That is helping! He is definitely stronger and more mobile after eating and drinking. Plus, he has a newfound love of Star Trek and who doesn’t love breakfast in bed?!

It was such a relief to find something that makes even a little bit of a difference. Just making this one change helps us so we are not hurting ourselves and it helps Robert because not being able to move is getting frustrating for him.

We still have to find the underlying issue and my hope is that it is something that can be fixed. I worry about kidney damage from all of the medications he is on but hope it’s something simple like dehydration, which we can fix.

The puzzle of Robert continues but so does our persistence in finding answers so we can slow the inevitable steps down that darn staircase.

Caregiving Decisions: All Day, Every Day

2020-06-06T14:56:00.001-07:00

Decision fatigue can creep up on caregivers. I know when I can’t even decide what to make for dinner that my decision making ability is on overload. (I usually end up choosing breakfast for dinner at that point – easy and comforting!)

The pandemic has added even more decisions for caregivers to make.

Shortly before the stay-at-home order in California, I made the decision to keep Robert home from Day Program. They hadn’t yet closed but he is prone to pneumonia and it is virtually impossible to social distance at Day Program.

I decided it was safest for Robert to keep him home.

There’s no set reopening date for the Day Program but, at this point, I can’t send Robert back. Not any time soon anyway. He loves being with friends but I can’t jeopardize his already precarious health. I am not worried about his lack of socializing since, with the three of us home, Robert is more engaged in our conversations, enjoying watching shows with Richard while I work from the home office and loves petting Taz while telling him “I love ya a lot, Taz” several times a day. He sleeps in when he needs to and can take as long as he wants to eat a meal (now clocking in at close to three hours – per meal!). As an added bonus, my conversations with him involve phrases other than “hurry up, we’re late!”

For over two months, I decided it was best not only to keep him home from Day Program but also his weekly Physical Therapy appointments. However, I thought he would be fine since he walks more at home than he does being in a wheelchair all day at Day Program.

After about two weeks at home, though, he was having more trouble with his balance and with his legs “working.” Things got worse as the weeks went by. It took both Richard and I to get him out of the recliner to stand. It took both of us to help him walk down the hallway, all the while telling him how to walk and sometimes patting his leg to “cue” him. We had to literally tell him how to move.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Move your right foot.

Move your left foot.

Keep your head up.

Push the walker.

Robert’s brain was having trouble communicating with his legs. I worried that it was because I didn’t take him to PT; I worried that it was permanent; I worried I would no longer be able to care for him like this.

I talked to his movement specialist and she thought it was a progression of his Parkinsonism. She felt going back to PT might help.

I wasn’t convinced it would be safe to take him so mulled it over a while longer.

Soon thereafter, Robert fell three times within a week. The third time landed him in the ER to get checked out (nothing broken; no concussion).

I called PT to see what their protocols were so I could weigh the risks. They provide everyone with masks, limit the number of people in the waiting room and gym area and thoroughly sanitize after each patient session.

I decided it was time to get him back to PT.

He was happy to return to “work out” and I was happy to learn that he still had muscle strength so I didn’t need to feel guilty about not taking him to PT.

(Guilt is so often an unwelcome companion of decision-making.)

The therapist mentioned that he should be sitting up instead of in a slouched position which makes me think the recliner might have had something to do with exacerbating his decline. I also decided to slightly reduce one of his anti-seizure meds that I know affects his mobility. It had been increased to the current dose in January but maybe a slight reduction would give him the “boost” his brain needed. The risk is that we will see an uptick in his seizures.

I have to decide between mobility and an increase in seizures.

For now, Robert is going to PT weekly again, his problematic medication was slightly reduced and he does not sit in the recliner (thankfully, he hasn’t even asked about it!).

All these decisions have helped. He is still not as mobile as he used to be and I haven’t dared see if he can walk down the hallway yet but he’s better at transferring and standing up.

With all the mobility issues, I decided to let go of his daily showers since he doesn’t have the stamina for that and I let go of the idea of putting him in pants and a shirt every day since I don’t have the stamina for that. Some days he is in pajamas all day and that’s fine for both of us.

These are just a few of the decisions Richard and I grapple with while caring for Robert during the pandemic. There are others, of course. Do we all wear masks when we venture out? (That’s a resounding yes.) Do we go out to eat? (No, that is not a good decision for us right now.) Do we order take-out? (We didn’t for a couple of months but we do occasionally now.) Do I keep Robert’s non-essential medical appointments? (No, it’s only essential appointments for now, of which PT is included.)

Caregivers make decisions every day, all day long. They may not be the decision that other caregivers would make but each caregiver knows what is best for them and their loved one.

What works for someone else may not work for you. Sometimes we might even make a decision and then change our mind! That’s allowed!

And sometimes you can give your brain a break and let someone else decide what is for dinner (let me help you: breakfast for dinner is always a good decision!).

Making Decisions: A Lesson From Dad

2020-05-31T20:51:00.000-07:00

The topic of "decisions" has been on my mind lately and I now realize why.

Dad died ten years ago today and he made his own decisions about treatment for his kidney failure (deciding against it). It was not the decision I would have made for him but, strangely enough, I have to make a similar decision about my puppy, Taz (he's 7 but always my puppy). Taz doesn't have cancer but he has a parathyroid tumor causing hypercalcemia, requiring surgery. Without it, Taz could eventually go in to kidney failure.

Taz is the most temperamental dog (or cat for that matter) that I've ever had. He's picky about his food, doesn't like to be disturbed when he's asleep (but loves to hog the bed), gets grumpy with other dogs when his tummy hurts and absolutely refuses to take medication. Both our vet and dog walker said he is the original social distancer but if you're in his tribe (or eventually lets you in to his tribe), he adores you, cuddles with you and makes you feel like you’re his favorite person in the whole world!

The surgery requires a several day stay in the doggie ICU after surgery and, quite possibly,

medication for life.

I honestly don't know that I want to put my little sensitive guy through all that.

For a long time, I was upset with Dad for choosing not to investigate the cause of his kidney failure (most likely, his cancer had returned) much less treat it. I have come to realize that was the best choice for him.

We all have to make our own decisions.

We haven't decided about Taz yet but I am enjoying each day with him while I mull over the options.

As for Dad, he was an avid individualist full of contradictions which was both maddening and fascinating. He would never listen to reason but he was one of those people who would light up a room with his presence. He adored his kids and grandkids but was married and divorced more than a couple of times. He made and lost a boatload of money and then made it again (and lost it). He didn’t have a lot of friends but people loved to be around him!

He had the bluest eyes I've ever seen and a mischievous grin that he flashed not only throughout his life but at his granddaughter, Rachel, as he was dying.

I used to get so mad at him for a million different things (all absolutely legit, believe me) but I also recognize that I have wonderful memories of him and wouldn’t be the person I am today without his influence (whether it was negative or positive).

Of one thing I am sure and Rachel reminded me of this today: I was his favorite daughter.

(As his only daughter, it was a fun little running joke we had my entire life.)

Make the decisions that are right for you. Enjoy every moment with the people (and animals) in your life and every now and then, flash a mischievous grin – just for the heck of it.

Miss you, Dad. Don't cause too much trouble up there.

Tips to Help Caregivers Manage during this Pandemic

2020-04-22T20:05:00.000-07:00

The COVID-19 pandemic put much of our world on pause. Millions have lost their jobs or have seen a decrease in their work hours. Small businesses are going out of business or, at the very least, struggling to stay afloat. In the US alone, hundreds of thousands have been or are sick and tens of thousands of people have died. Families are caring for sick loved ones and grieving those they have lost.

Life is very, very different.

Life is different for caregivers, too. More than 40 million people in the US provide care for a loved one or friend and a great many of those are also employed. With the stay-at-home orders, loss of income, difficulty getting supplies, and the lock down of many hospitals and care facilities, the stress on caregivers and those they care for is at an all-time high.

Trish, Robert and Richard

What can caregivers do to cope with these situations and reduce their stress? These are a few suggestions to help you get through this extraordinary crisis.

Stay-at-home Orders. The Stay-at-Home orders are critical to keep people safe. Social distancing works. However, caregivers who live with their loved one know it is impossible to keep a distance while also caring for our loved one.

The best we can do is wash our hands frequently, wear gloves and a mask when possible, and keep commonly used surfaces disinfected. Many of us are spending even more time on caregiving duties because the outside caregiver can no longer come over or the day program has closed. This puts an even greater strain on us and adds to the stress of this already stressful time.

Self-Care Tip. Caregivers cannot leave their home to get a break but we can find ways to take a break and reduce our stress. Spending 24/7 with our loved one means we are going to get on each other’s nerves (it’s okay; that’s normal). Find ways for both of you to have your own time and space. Can you go out in the backyard while your loved one is eating? Can your loved one do a puzzle book while you read in the other room? Even spending time together doing an activity like watching a movie can reduce your stress and keep that connection with your loved one.

Loss of Income. Losing your job or having your hours cut is devastating to someone on a strict budget. A dramatic loss in income creates worry and stress not only for you but your loved one as well.

While this is a terribly depressing time it is also time for action. Apply for unemployment as soon as possible. The CARES Act extends unemployment benefits so even if you didn’t qualify before you might qualify now. If possible, reach out to other family members for financial help. Contact your local food bank or Meals on Wheels for help with food. Reach out to creditors and landlords or mortgage companies to see if they can defer payments for a few months.

Self-Care Tip. There is nothing more stressful than not knowing how you will pay your bills or feed yourself and those you care for. Taking action will help get you back on your feet but it is also critical for you to do something to reduce that overwhelming stress in the moment.

The best way to do that is to breathe. (Bear with me.) Close your eyes. Take a deep breath. Repeat. You need to reduce your stress if you are going to be able to take that action described above. You need your full energy right now and that means taking care of yourself and allowing yourself a few moments to breathe and tell yourself you will get through this. You will. You will get through this.

Where are the supplies?! The lack of everyday supplies is maddening. Not to mention caregivers needed PPEs before anyone knew what a PPE was! (We need toilet paper, too, and it makes zero sense why there is a shortage of that right now.) How do we get the gloves we need or masks when all the stores are sold out? (And who the heck has all the toilet paper?) Luckily, caregivers are both persistent and creative. A few tips to find those necessary supplies:

· Call your health care professional. A home health nurse, your doctor, a case worker or pharmacist might be able to at least steer you in the right direction if not order supplies for you. We have personally had luck with a home health nurse getting us gloves and alcohol prep pads. We also had luck with ordering gloves through one of our incontinence supply vendors.

· Create online orders in the middle of the night. A friend gave me this tip and said product availability and available delivery times were better in the middle of the night.

· Take advantage of senior hours. If possible, take advantage of the early hours some stores are setting aside for seniors or those with serious health conditions. I do not know if being a caregiver of someone will get you in early but it can’t hurt to try. Supplies seem to be more plentiful during these hours – even for paper products!

· Ask friends and neighbors. If there is a positive in this pandemic it is the connection people are creating with others. Neighbors are helping neighbors and friends and family are finding creative ways to help one another. Ask these people (even if you don’t know them!) where to find something you need.

· Check non-traditional suppliers. Some of the essential businesses are now selling things like toilet paper and paper towels. Check stores like Home Depot or Lowes for disinfectant wipes and toilet paper. There are even restaurants selling not only their to-go food but also rolls of toilet paper!

· Make your own mask/face covering. Homemade masks and face coverings are springing up. There are a few sites to help you make your own but this one has directions for both a no-sew version and one that requires sewing.

Self-Care Tip. Connect with others! Whether by phone, FaceTime, email, social media or texting, it is important to stay connected with others. Friends, family and strangers alike can not only help you find needed supplies but can also lend support and words of encouragement while you care for your loved one at home.

Lockdown Orders. Not being able to visit our loved one in the hospital or a care facility is not only tough to go through but frightening for caregivers. Just the possibility of having to send our loved ones to a hospital is even more stressful than usual because of the lockdown orders. There is no simple solution for this situation.

As caregivers, we are pros at advocating for our loved ones, keeping in constant communication with the hospital or the care facility caring for our loved one. We are used to being right by their side during a hospitalization and are a frequent visitor when they are in a care facility. Right now, that can be dangerous for us and for our loved one.

The best we can do at this time is get and give information over the phone. This is not ideal since hospitals and care facilities are busier than ever so enlist an advocate within the healthcare system, if possible. Do you have online access to the medical records of your loved one? You can check on blood work and other test results once they are posted online. Enlist your GP to see if they can get additional information from the hospital. Implore a contact at the care facility to keep you posted on your loved one.

If possible, keep in contact with your loved one through phone or text. However, this is not always reliable since our loved one may not be well enough to communicate with us or they may have dementia or otherwise unable to use a phone. Ask the healthcare professionals providing care for other ways you can best be kept apprised of your loved one’s condition.

Self-Care Tip. This is very stressful situation to go through and you will need to care for yourself so that you do not end up with your own health issues. Make sure you are eating properly, drinking enough water and getting enough sleep. This may seem like obvious advice but every caregiver knows that during stressful times we forget to do all of these things. You have to stay well to prepare for your loved one’s return home so please take care of yourself.

Caregiving is more challenging than ever right now but we will get through this.

Stay safe and stay well. Take care.

Trish

Trish Hughes Kreis is co-author of the 365 Caregiving Tips: Practical Tips from Everyday Caregivers book series and works as a full-time Legal Administrator. She is also a freelance writer who advocates on behalf of her disabled youngest brother, Robert. Robert lives with intractable epilepsy, has an unwavering faith and a delightful way of declaring everything excellent. Robert has lived with Trish and her husband, Richard, for several years and they do their best to keep him in a never-ending supply of Rocky Road ice cream, happy, healthy, and, of course, excellent.

The Caregiving Snowball

2019-10-27T19:49:00.001-07:00

It’s hard to tell when you’re in what I call the caregiving snowball.

Here’s how it works: you have survived the beginning of caregiving where everything is whirlwind: doctors’ appointments, diagnoses, documents to create, decisions to make but then things get pretty steady. Things are certainly not easy but steady enough to establish routines with only occasional hospitalizations or emergencies. The length of this period is as varied as there are caregiving situations. Some skip it altogether and go straight to the snowball.

The crew happy to be home

The snowball is when things get crazy.

There are possibly several falls, repeated illnesses and multiple hospitalizations or stays in a Skilled Nursing Facility. The rebounding isn’t quite like it used to be. It takes longer to recover from pneumonia or a fall.

The days of routine look pretty good right about now.

Sometimes I wonder if we are in the snowball period with both Robert and Carol. I think it’s really impossible to tell when a caregiver is actually in it but, boy, it sure feels like it sometimes.

We have to celebrate with cake!

Robert has gone from getting sick with bronchitis or pneumonia one or two times a year to four to six times a year. It is getting more difficult to treat him at home when he becomes ill because his mobility goes out the window and he goes downhill so quickly. Not to mention the oral antibiotics that his doctors prescribe are losing their efficacy. He requires IV antibiotics when he’s this sick and that’s something we can’t do at home.

Recovery takes much, much longer. He may end up in the hospital for a week but then needs a few weeks in a SNF to get his strength back. Even when he’s back home, there is a noticeable decline.

The snowball to me means longer recovery times and a steady, permanent decline in Robert’s overall health and mobility.

With Carol, she may have more frequent falls and hospitalizations but she seems to bounce back without an additional decline. At least, if she has a decline in mobility it’s more minor than I have witnessed in Robert.

Freedom!

Both Robert and Carol are back home and the caregiving snowball has been on my mind. They both got home on a Thursday and by Friday, Robert couldn’t walk, had a very tight cough and was exhibiting his usual symptoms of getting sick. His vitals were good but I was concerned, especially since he had choked/coughed a lot during the welcome home dinner!

Thankfully, Robert had a scheduled appointment with his pulmonologist who did an ultrasound to see if there was any fluid lurking in his lungs and agreed with me that antibiotics would help stave off any possibility of an infection. A couple of days of rest and the antibiotics as well as his more aggressive nebulizer treatment (three times a day instead of the usual two) seems to be working. Robert is moving around a bit better but we’re not pushing it. He is using the wheelchair more than usual but we are also letting him walk with the walker for short distances so he can build up his strength.

Sleeping but happy

Carol is sleeping quite a bit but Richard is making sure she is taking her medication and drinking water as well as eating a little something. She eats then goes back to sleep. Sometimes this is an indication she has something brewing but we are chalking it up to not getting good sleep in the facility. (Because we are going to think positive!)

So I don’t know if we are in the caregiving snowball yet or not. I’m happy to have Robert and Carol home, just where they belong and whether we are or not in the snowball really doesn’t matter since Richard and I will move along this journey where it leads us.

I am grateful to have Richard beside me during this crazy caregiving experience and, if we are in the snowball, well – we both love a good snowball fight so I guess things will work out just fine.

My co-pilot

Caregivers: We Can Do Hard Things (but Don’t Have to All the Time)

2019-09-29T19:02:00.001-07:00

I fell in love with this sign: “I CAN DO HARD THINGS.” Yes! I can do hard things! I am proud of myself for doing hard things!

I found it while organizing an office move. This is one of my specialties – I’ve worked at just a few law firms but have been in charge of at least half a dozen moves. This last big move involved more than 60 people, half of whom are timekeepers – meaning their time is what pays our bills. Getting them to take time out of their already busy and stressful days to prepare for an office move requires a little bit of begging, cheerleading, humor, my best impression of a drill sergeant and a whole lot of rolling up my sleeves to help.

In other words, it is hard work. But I CAN DO HARD THINGS!

Other Brother’s words of wisdom ring in my ears when I am doing these hard things: work smarter, not harder. (To his credit, Other Brother works both smart and hard!) I understand the meaning behind these words: be efficient! Between checklists, spreadsheets, team building and timelines, the moves are stressful but I have earned the trust of partners and staff alike to get us moved and up and running on schedule. So, yeah, I am working smarter but it is still HARD.

Caregiving is like that too.

Caregivers CAN DO HARD THINGS! I work hard every single day at keeping Robert well. I work hard to make sure Robert has the best treatment plan for his epilepsy. I work hard to help him keep as mobile as possible for as long as possible. I make hard decisions about Robert’s health care multiple times a day. When Robert was hospitalized for the gazillionth time for aspiration pneumonia I refused a doctor’s recommendation of a feeding tube for Robert.

Why? Because one of Robert’s greatest joys in life is eating! Even if he can continue to eat a little something with a feeding tube, I just cannot take one of his joys away from him. Hearing the doctor – a doctor who had never met Robert before in his life – explain to me the dire consequences of me declining the feeding tube was HARD. I could tell he thought I was supposed to feel a little guilty about this decision. Maybe even that I should realize what he was saying was “for the best.”

Standing up to the doctor and repeating my refusal of the feeding tube was even harder than the actual decision but I had no problem doing it. I stood up a little straighter, looked him in the eye and told him I knew it was the right choice for Robert. (I had other doctors come in a little later to tell me they supported my decision and, of course, Robert’s regular team of doctors agreed with my decision.) Robert will continue to aspirate and get pneumonia but he can aspirate on saliva during a seizure so a feeding tube will not completely eliminate the risk.

So, yes, caregivers CAN DO HARD THINGS and we do them every damn day!

This is why I have a love/hate relationship with this sign that alternates between hanging in my closet and sitting on a shelf underneath some scarves.

I can do hard things. I can work smarter. Sometimes, though, I (and probably millions of other caregivers like me) just want to take a little break. Let’s ease up on the hard work that we know needs to be done and that we know we can do. We need to be gentle with ourselves, pat ourselves on the back for a job well done, for working our butts off to keep our loved one alive and happy and joyful for as long as we possibly can.

And we need to work as fiercely hard for ourselves as we do for others. For me, that means taking 20 minutes to walk. That means ordering take-out instead of making dinner. That means getting a pedicure with my daughter or taking a respite with my husband or, sometimes even, just not worrying about my to-do list.

I CAN DO HARD THINGS but I don’t have to do them all the time.

And neither do you.

Take your break. Be gentle with yourself. Do not let the guilt creep in; instead, feel your own joy. Set aside that to-do list. Breathe.

Then go back to doing those hard things that are inevitable but do them with renewed energy and peace.

Confessions of a Caregiver: Accepting Help is as Tough as Finding It

2019-08-18T20:00:00.000-07:00

Certainly I don’t need help.

Robert goes to a Day Program while I work so that’s already more help than some of the other 40 million caregivers get. I feel fortunate I have this great resource.

Almost 11 years ago when I started caring for Robert he could walk unassisted and get dressed by himself. He needed help with medications, time management, toileting, and making safe and healthy decisions (like not wearing urine soaked clothes that had dried overnight).

The decline has been slow and steady but brutal. It is hard to see a steep decline when living it day to day but sometimes it hits me just how significant of a decline it has been.

Robert and Aunt Evelyn

After each bout of pneumonia or the onset of Parkinsonism or the relentless, ongoing seizure clusters, Richard and I picked up the slack with the tasks Robert can no longer manage. Dressing has gone from picking out his clothes and prompting him to pull up his socks to completely dressing him. Walking unassisted transitioned to using a wheelchair just for long distances to using it most of the time. Robert may use the walker at home but he can’t do so unassisted. We walk next to him so he doesn’t fall but he still does fall. Falling (or almost falling) means catching him or picking him up.

All 210 pounds of him.

Robert has developed other health issues which require additional maintenance and medications to keep him as healthy as possible. I now brush his teeth to reduce the bacteria in his mouth so there’s less of a chance of pneumonia when he aspirates. We put the nebulizer mask on him twice a day to keep his lungs open and healthy. His medications have changed and increased so much that, for fun, I’d like to walk into a pharmaceutical school and take their final exam to see how I do. I may not get an “A” but I think I’d pass.

I have a strange idea of fun.

Incontinence has moved from urinary incontinence to occasional bowel incontinence. Robert’s memory is so inconsistent that sometimes I have to remind him which way to turn out of the bathroom to get to his bedroom or explain that it’s breakfast time and not time for a scoop of Rocky Road ice cream.

Still, I didn’t think we needed help. After all, there were two of us taking care of Robert. The bulk of the physical work fell to me since Richard has his own health issues but I was managing it okay – until I wasn’t.

My stroke last year was a wake-up call and I was determined to make changes. I immediately started walking regularly, taking medications to prevent another stroke and have greatly reduced my carb intake. For good measure, I feel even more guilt than usual when I cave to those sugary cravings. I do better about managing my stress and have no trouble saying “no” to doing too much for too many on any given day.

My longer term goals related to caregiving were to hire a housekeeper, take a respite and hire in-home care for Robert.

These goals took a little bit more work but I hired housekeepers, fired them after not showing or calling and promptly hired another company. I absolutely love this extra help and am grateful to be able to afford such a luxury. Richard and I took a respite within a few months of my stroke.

Two goals down; one to go.

I started my search for in-home care by posting an ad on NextDoor and Care.com, telling friends and family I was looking and calling several agencies. The referrals from friends were already working elsewhere, replies to the ads were minimal at best and the agencies either didn’t show up or were too expensive. (One rep came in and declined my offer to talk with Robert. She wanted to get straight to the services, their cost and even pulled out a contract. Um, thanks but no.)

The other problem with agencies? They only do medication “reminders.” I’m sorry, but no amount of reminding is going to get Robert to take the correct medication. He needs to be handed a cup with two pills at a time and told to take the meds.

Even while looking, I was having trouble nailing down exactly what someone would do but decided a few hours a couple of days a week would be helpful.

One of the hardest parts of providing care to Robert is the constant interruptions and needs. He probably needs something every ten minutes. If it isn’t him asking for something, I am restocking supplies and medications, doing laundry, ordering more supplies and calling medical professionals and health agencies.

It would be nice to have a two hour break a few days a week but because it was proving to be so difficult to find care, my head started the excuses reel:

How can someone help me for just a few hours a week? Will that really be helpful? I mean, I can change him myself and let him watch Family Feud and have a few minutes to restock or do laundry or make calls.

Plus, what about our dog? We have an older dog who doesn’t mind strangers but our “puppy” (who is actually pushing seven years old) takes a while to welcome people into his tribe. I wasn’t sure he would get used to someone.

Puppy and Oz

Other Brother asked me how my search was going and how he could help. I appreciated his offer to help pay for services but I refused to pay an exorbitant amount for a small amount of in home care – no matter whose money I was spending. Especially when Robert has the benefit of IHSS hours (which means we can hire a care provider using these hours and the state pays the person instead of us paying out of pocket).

I suppose that is one more excuse I was coming up with not to hire help but I really tried to find in-home care. It just was not working out – excuses or no excuses.

It became more difficult to find help than any benefit that I could gain even if I did find it. I told myself that all the other changes I had made after my stroke were enough. We were managing just fine, thank you very much.

Over the next several months, the decline in Robert’s mobility and health continued. There are more frequent bouts of pneumonia and his mobility takes a worse hit each time. The last bout of pneumonia really knocked him for a loop and he was in a Skilled Nursing Facility for a few weeks to get intensive physical therapy.

Not showering Robert. Not dressing him. Not sorting his medications. Not doing five loads of laundry a day (no joke). Not helping him stand or keeping him upright while he was walking.

This was nice. I really, really liked having a break from the physical part of caring for Robert.

We saw his mobility neurologist about a week after Robert returned home and she saw just how much trouble he was having even just adjusting himself in the wheelchair.

She looked at me and said, “You need to get in-home help. This is too much.”

I love this doctor. She cares for Robert but also cares about the impact caregiving has on me. She is smart and helpful and kind.

And she validated that what I am doing is a lot.

For some reason, I couldn’t do that for myself so let the reasons for not hiring in-home care pile up.

She told me she hired caregivers for her mom who has dementia and lives in an assisted living facility. She reminded me about Care.com. She gave me a goal of finding a caregiver. Interview caregivers at Starbucks, she said. Find someone you like then bring them into your home.

She gave me the steps to find someone. Her words were what I needed to hear.

I told my best friend. I told Richard. I told Rachel. I told Other Brother. Rachel had been trying to convince me to get help on our nightly walks. My best friend told me she had been very close to calling Rachel and staging an intervention so I would get some help.

They all agreed we needed help. They knew all along. It just took me some time to see the benefit was worth the effort.

I renewed my efforts to find help. I placed another ad on Care.com and got several applicants this time. I took time off work and set up interviews at Starbucks. Some showed up, some were terrible, one was most likely impaired.

None were right.

I continued screening applicants. I did a phone interview and fell in love with someone but she had transportation issues. Then scheduling issues. It didn’t look like this would work out.

Then, a miracle happened.

My son-in-law saw a post on NextDoor from a woman who only wanted to work ten hours a week, was IHSS certified and lived a couple of miles away. He texted me her info and I immediately called her.

She was everything I had thought would be a perfect candidate: IHSS certified and she could work in the afternoons when Robert gets home from Day Program.

She even liked dogs.

Crazy Puppy

She came over and met Robert and Puppy. She loved Robert and didn’t run screaming from the barking Puppy.

I hired her on the spot.

Puppy barked at her the first day and Evelyn took it in stride. She gave him treats and Richard took him in the bedroom after a while so she could work with Robert. I showed Evelyn the routine for after Day Program and before we knew it, two hours had gone by.

Still, after the first day, I wasn’t sure if this was going to work. Puppy and Richard can’t stay in the bedroom for hours every day. Evelyn wanted someone who was mobile and Robert is, well, mostly mobile. I worried about that “mostly” part.

And Puppy.

I felt better after Day Two. Evelyn told me she wanted to do everything. She said I didn’t need to help her. She sweetly called me a mama bear (I can’t argue with her there). I went in the office and worked on a writing project. It was two hours of mostly uninterrupted time and it was glorious.

Puppy was even warming up to her.

By Day Three, we were calling her Auntie Evelyn and Puppy was comfortable enough to hang around her without barking.

Day Four Richard gave her a house key.

On Day Five, Richard had his first post-surgical appointment at the time Robert was due home and I wanted to attend with him. We weren’t sure if Evelyn and Puppy were ready to be alone together but Evelyn said she was ready. Puppy was ready too – he ran circles around her when she came in and then brought her a toy!

Mama Bear leaves them alone now; Auntie Evelyn and Robert watch Family Feud after she gets him into his pajamas and while she folds laundry. They laugh like old friends and are plotting how they can get on Family Feud together.

She is everything I wanted in a caregiver. It took a year but the effort to find help was worth it.