10 Tips for Caregivers Caring for those with Epilepsy

November is both Epilepsy Awareness Month and National Caregivers Month and since I like to multi-task, I thought this would be a good day to bring the two “awareness” months together.

 

Robert and his helmet

My good friend Denise Brown of Caregiving.com is publishing “10 Tips for Caregivers” each day in November and my contribution of tips is for those caregivers caring for someone with epilepsy. (A friend of mine and I also wrote 10 Tips for Caregivers While Traveling which will be posted here and on Caregiving.com on Friday.)

This is going to sound crazy but I am stumped.  Call it writer’s block or a brain freeze or the effects of it getting dark at 5:00 p.m. I am staring at a computer and have no idea what tips to give someone who is caring for someone with epilepsy.

Maybe it’s because epilepsy is normal to me. Robert has had epilepsy his entire life so seizures have never scared me but I know they can be scary.  Now that Robert lives with me and Richard, I think I have to take it back that seizures are not scary. What scares me now is Robert’s long seizures (in his case, three to five minutes).  His chest heaves as his breathing becomes labored, his hands twitch or tug at his clothes, he is unresponsive and the stop watch on my phone keeps racking up the seconds. The minutes. More minutes. 

Okay, yeah, seizures can be scary.

Some of these 10 caregiving tips will focus on what to do when a person is having a seizure. 

1. Don’t panic. Reassure others in the area and explain what is happening.  Robert’s seizures are called Complex Partial Seizures and they usually last 10 – 20 seconds. If you don’t know what to watch for, the seizure could easily be missed.  During his last hospital stay, a nurse was helping him get dressed on discharge day. I was talking with the doctor but out of the corner of my eye I could tell the nurse was trying to get Robert to respond and he wasn’t answering her. I took one look at his head dropped down and to the right and his limp body and explained to her he was having a seizure. By the time I finished explaining this to her, he was awake and joking around with her. She looked surprised but I like to think she learned a little bit more about epilepsy that day.
2. Keep the area clear. This is both during a seizure and in the general living area. When living independently, Robert has fallen on a lamp (which was on) during a seizure. As a guest in my small apartment many years ago, he fell on a glass tabletop.  Through the years, he has hit the floor or sidewalk, dented walls with his head, fallen into coffee tables or tables and fallen against toilets so hard, he broke them.  Robert lives with us now and is constantly supervised so it is no longer possible for him to fall on a lamp and sustain 3^rd degree burns. His pathway is clear in case he has a seizure while walking and I keep him clear of glass or windows.
3. Time the seizure. Even though Robert’s seizures usually last 10 – 20 seconds, I like to time them. If his seizure hits five minutes, I have medication to give him to stop the seizure. I have both Ativan and Diazepam – although I’ve only used Ativan for him so far.
4. When to call the paramedics. It isn’t necessary to call 911 every time a seizure hits but if you are familiar with the seizures and a particular seizure is lasting longer than normal (and especially if they are longer than five minutes) or if the person has been injured or cannot breathe, call for help.
5. Do not put anything into the person’s mouth. This is extremely important and also a good time to dispel the myth that people having a seizure can swallow their tongue. No they cannot. Not too long ago, I read a celebrity had helped someone with a seizure and they stuck a wallet in that person’s mouth so they wouldn’t swallow their tongue. I cannot believe this myth persists so help spread the word that it is not true.
6. Turn the person on their side.  If possible, turn the person on their side if they are on the floor (or have fallen) during a seizure. Move anything that might hurt the person out of the way.  Do not try to stop the person from moving.
7. Keep a seizure log. Keep track of the time of the seizure, the behavior of the person during the seizure as well as after the seizure, anything that immediately preceded the seizure (such as eating or showering). This is useful to give to the neurologist and to try to track any seizure “triggers.”  Robert has a seizure almost every morning while getting cleaned up for the day. Seizures are not usually predictable so it is comforting to know I can “prepare” for the morning seizure. Probably one of the worst things about seizures is not knowing when they will strike. If anything, the log will allow you to look back to see if there are patterns to the seizures.
8. Medical Equipment.  Robert wears a helmet which has saved him from many head injuries.  Unfortunately, he didn’t start wearing one when he should have (which was when he was a child and into young adulthood).  If balance is an issue, then a walker may become necessary.  I am holding off putting Robert into a wheelchair until absolutely necessary but we do use one when going on long excursions.
9. See a neurologist regularly. It’s important to see a neurologist so he or she can adjust medications if needed or to inform the patient and caregiver of any new medications or treatments that might be available to help reduce the seizures.
10. Educate yourself.  1 in 26 Americans will develop epilepsy in their lifetime. 3 million Americans and 65 million people worldwide have epilepsy. 50,000 people in the United States die from epilepsy related reasons. These are just a few of the facts about epilepsy. There are several wonderful advocacy and educational organizations with lots more information on epilepsy and seizures. CURE (Citizens United for Research in Epilepsy) is one such organization and I was fortunate enough to be able to interview them for Epilepsy Awareness Month. For more facts about epilepsy and ways to help, please read the interview and visit their website.

I hope these 10 tips for those caregivers caring for someone with epilepsy have been helpful. Please let me know your own tips and experience with seizures and epilepsy in the comment section below.

Oh, and do me a favor and educate one person this month about epilepsy. Just work it into a regular conversation and tell them one fact. Epilepsy research is sadly underfunded and the more people know about epilepsy and talk about it the more research dollars we can get and the less stigma there will be about epilepsy.

Thank you!

Epilepsy Awareness Month: Advocating for Awareness and Answers - Interview with CURE

November is Epilepsy Awareness Month! While I try to advocate and spread awareness and education year-round, it is always exciting to give a little extra effort in November.

Last year, we had 30 days of interviews with people affected by epilepsy. I was quite honored to highlight the stories of people living with epilepsy or those who lost a loved one to epilepsy or those advocating to spread awareness and education about epilepsy. If you have a chance, please read these amazing stories of hope and inspiration.

 

This year my focus is on advocacy organizations and I have several interviews lined up. Since taking over Robert’s care, I have become involved in the epilepsy community and it is amazing to me how many organizations there are to help those with epilepsy as well as their families and caregivers. November is also National Family Caregivers Month so this is a perfect storm for highlighting advocacy organizations.

Each of these organization offers something unique and special. Whether the organization raises millions of dollars for research or raises money to fund the purchase of a service dog or is there for support or to tell stories, these organizations have several things in common: their heart, their commitment and their desire to bring about change.

I am happy to showcase these organizations and appreciate their taking the time to be interviewed.

Today, I am absolutely thrilled to bring you an interview with Tracy Dixon-Salazar, PhD, an Associate Research Director of Citizens United for Research in Epilepsy (CURE).  I almost fainted when she agreed to the interview and I owe a special thank you to the phenomenal and generous Christy Shake for introducing me to Tracy and to Susan Axelrod for her support of the interview.

Now that I’ve recovered (without fainting, thank you very much), please meet Tracy:

Tracy has been a volunteer on the CURE Research Review Board since 2006 and joined CURE as a Research Manager in 2013. Tracy received her Ph.D. in Neurobiology from the University of California, San Diego where her dissertation focused on the role of immune molecules in normal brain development and plasticity.  She went on to do a post-doctoral fellowship where she identified genes that underlie epilepsy and studied their disease-causing function using induced stem cell and animal models. Tracy’s desire to get a Ph.D. was inspired by her daughter, Savannah, who suffers from Lennox-Gastaut Syndrome type epilepsy with no known cause. She is a staunch epilepsy advocate and has worked with numerous organizations to communicate epilepsy research to families and to instill the hope that by working together, one day we will find a cure for this devastating disorder.  As Associate Research Director, Tracy will use both her expertise as a researcher and her passion as a Mother of a child with epilepsy to further our mission of finding a cure for epilepsy.

Now, please join me in learning more about CURE.  

Robert’s Sister:  Tell us the name, mission and goals of your organization.  

Citizens United for Research in Epilepsy (CURE)

CURE, Citizens United for Research in Epilepsy is a nonprofit organization dedicated to finding a cure for epilepsy by raising funds for research and by increasing awareness of the prevalence and devastation of this disease.

Robert’s Sister:  When was your organization founded and what was the catalyst for forming the organization?  

CURE, Citizens United for Research in Epilepsy, was founded in 1998 by parents of children with epilepsy who were frustrated with their inability to protect their children from the devastation of seizures and the side effects of medications. Unwilling to sit back and accept the debilitating effects of epilepsy, these parents joined forces to spearhead the search for a cure.

CURE’s mission is not only driven by the pressing need for scientific research and data, but by the painful struggle of families who suffer from epilepsy worldwide.

Robert’s Sister:  What do you see as the greatest need for epilepsy awareness or advocacy and how do you help fulfill that need? 

Lack of understanding of the prevalence and potential devastating effects of epilepsy is a major problem in our society today.  Because the public generally does not know what epilepsy is, and how life altering it can be for the many patients and families who have it, this leads to basic misconceptions about epilepsy in general as well as a significant lack of research dollars being spent to find a much needed cure.  CURE is working to change that!

Robert’s Sister:  What do you want people to know about epilepsy and the people you are working to help?

• Epilepsy, or more accurately, the Epilepsies, are a diverse group of neurological disorders characterized by recurrent seizures.
• 1 in 26 Americans will develop epilepsy in their lifetime.
• An estimated 3 million Americans and 65 million people worldwide currently live with epilepsy.
• Each year at least 200,000 people are diagnosed with epilepsy.
• In two-thirds of patients diagnosed with epilepsy, the cause is unknown.
• Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined – yet receives fewer federal dollars per patient than each of these.
• It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexpected Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
• Sudden Unexpected Death in Epilepsy (SUDEP) accounts for 34% of all sudden deaths in children.
• 2.2 million Troops have served in the current Iraq and Afghanistan conflicts; it is estimated that 440,000 of these soldiers will experience traumatic brain injury (TBI) and more than 100,000 of these soldiers are expected to develop post-traumatic epilepsy (PTE).
• Epilepsy costs the United States approximately $15.5 billion each year. The indirect costs associated with uncontrolled seizures are seven times higher than that of the average for all chronic diseases.

Robert’s Sister:  What are some events your organization hosts in order to raise funds and awareness?

CURE fund research grants every year in our search for a cure. 

CURE also host numerous fundraising events to raise money for research.

CURE also just started this really neat new Seminar Series where we bring cutting-edge epilepsy research to Universities around the globe.

Robert’s Sister: Tell us about your successes!

Since its inception in 1998, CURE has raised more than $26 million to fund research and other initiatives that will lead the way to a cure for the epilepsies. CURE funds seed grants to young and established investigators to explore new areas and collect the data necessary to apply for further funding by the National Institutes of Health (NIH). To date, CURE has awarded 151 cutting-edge projects. CURE has advanced the search for a cure in so many ways, it’s hard to describe them all here. Check out this link to learn more.

Robert’s Sister:   How has epilepsy and your organization affected your life?

I remember the first seizure vividly. I awoke to the sound of choking coming from the room of my two-year-old daughter, Savannah. I entered to see her tiny little body jerking about violently in her bed. My husband and I didn’t recognize this as a seizure—we thought she was choking. I’ll never forget the words of the paramedic that night who said, “her airway is clear, but what you just described sounds just like a seizure.” That was our harsh induction into the world of epilepsy. Living in that world has been equally harsh.

Savannah’s seizures worsened despite treatment. By age three, she was having multiple types of seizure and had to wear a helmet. By age four, she began to have clusters of seizures that would last for hours unless drug intervention was used. By age five, she was seizing dozens of times a day, and delays in her development were becoming apparent. Savannah was diagnosed with Lennox-Gastaut Syndrome, a severe epilepsy with a poor prognosis. Despite dozens of tests though, no cause for Savannah’s seizures was ever found, and with no family history or precipitating event, we were mystified.

It has been devastating to watch what epilepsy has done to my child. With over 35,000 seizures in seventeen years, it has definitely left its mark. At twenty, Savannah is the developmental age of a five year old. Her face bears the scars from falls caused by seizures, and her heavy eyes tell of the medications she takes to “control” them. Due to these medications, she drools incessantly, is frequently constipated, has overgrown gums, staggers like a drunk, struggles to find words, and sports a not-so-feminine mustache. The first thing I do every morning before getting out of bed is place my hand on Savannah to see if she’s breathing. With frequent tonic-clonic seizures during sleep, I fear that one will claim her life, and one day she will be gone.

Because of her developmental delays, Savannah doesn’t fully realize how her life is different because of epilepsy. She has a childlike happiness, with an infectious giggle and the most loving soul I’ve ever met. But I know, and it torments me. She will forever be dependent on others for her well-being, and is prone to being taken advantage of by the dishonest. She must continue to take anticonvulsants despite side effects, because the alternative is much worse. She will continue to miss out and be excluded because of unrelenting seizures. And I will continue to live in fear of her death, but I expect that I will see it in my lifetime. What I want more than anything is a cure.

Sadly, there is no cure for Savannah. Perhaps, with maturity, she may stop seizing one day, but the damage is done. If only there had been something to help her in the beginning. My hope is that someday other children with epilepsy and their families won’t have to live the ordeal that we have, and so I’ve have chosen a career as a researcher.

During those early years of seizures and utter confusion, I began to read all I could about epilepsy. The papers I was reading were too advanced and I thought I needed to go to college to take some English classes. But, I soon learned that it wasn’t English I needed, but science. So I took my first science course and became completely enamored with the subject. I attended classes while my children were at school, and stayed up late to study.

Fifteen years later, I have a PhD in neurobiology and am an epilepsy researcher.

As both a mom and a scientist, I have a great respect for CURE. An organization that recognizes the ravage of epilepsy and takes an active role in the search for help, CURE has inspired hope among parents and dialogue among researchers about curing this exasperating disorder. CURE’s impact has, thus far, been significant, and I am honored to be a part of this group.

Update: About 18 months ago, things changed. We learned that Savannah had genetic mutations in numerous calcium channel genes and we knew from previous experience that calcium supplements made her seizures increase substantially. Therefore, her doctor wondered if using a calcium channel blocker might help her... and it did. For over two years Savannah would go into non-convulsive status epilepticus every 2-3 days and would require rectal diazepam to stop these non-stop seizures. In the last 18 months, Savannah has only needed emergency rectal medication 3 times. We are amazed! For the first time in more than 15 years, a medication is helping stop Savannah’s seizures. We are cautiously optimistic that our days of recurrent status epilepticus are behind us and we are hopeful that perhaps trying other types of calcium channel blockers will one day make her seizure-free. If you’re going to dream, dream big!

Robert’s Sister:  Please tell us what your involvement with your organization means to you.  Has this affected your own personal purpose? 

CURE, to me, is hope. I found CURE at a time my daughter had suffered over 18,000 seizures and failed 17 different treatments.  I had lost hope and felt utterly alone in our battle with epilepsy.  But then I met the mothers and fathers of CURE and my hope was renewed.  Here was a group of individuals, many who had children suffering from severe epilepsy as we were, who refused to give up without a fight.  They believe, as I do, that research is the key to helping patients with severe, unremitting seizures.  I began volunteering for CURE in 2006 and have never looked back!

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

We are truly grateful for the awareness you are creating with your blog.  It is so needed!!  Thank you!!!

Also, 93 cents of every dollar raised at CURE goes directly to research.  I love that!

Robert’s Sister:  Please tell us how we can contact and support your organization.     

CURE

430 W Erie Suite 210

Chicago IL, 60654

312-255-1801

www.CUREepilepsy.org

info@CUREepilepsy.org

Please view our GET INVOLVED page for the many ways you can support CURE and epilepsy research!

Robert’s Sister: My extreme thanks for your time and for all that you do!

I am still in awe of Tracy for getting a PhD in order to do learn as much as possible about epilepsy and to help her daughter and others with epilepsy. Can this woman get a Mother of the Year award, please?

Moments and Memories

Other Brother sent me a link to our dad’s house which is now for sale by the bank. Seeing just a few pictures of the house brought back flashes of memories of time spent at the house.  We didn’t grow up there – it was a house Dad had bought when we were all grown and he was marrying his third (or was it fourth?) wife for the first time (he married and divorced this same woman twice).

Dad's porch

Dad was Willy Loman, Rich Man/Poor Man and Jack Nicholson rolled into one.  His fortunes were always most certainly followed by losses so great he would call me for cigarette and Diet Pepsi money.

When Dad’s time ran out, his money had already run out months ahead of him. 

His house went back to the bank; his possessions were sold to help offset the cost of his funeral and the rest was either tossed or given away.

The pictures of this modest house which had been in a state of disarray when Dad died showed the bank had invested in new paint, new roof, new carpet and a bit of landscaping.

It didn’t look half bad.

The pictures also showed an empty house but with each click my mind filled in the blanks.

The kitchen was bright and cheery and probably didn’t smell of smoke since the drapes had been removed.  The dead plants in the corner near the sink could only be seen by me. 

His 20 year old refrigerator would have been filled with orange juice, Diet Pepsi, hot dogs, a mostly empty ketchup bottle, A-1 Sauce and leftover cooked noodles. Sometimes cans of beer and half empty bottles of wine. 

His freezer would have been packed with frozen meals, vegetables and meats and a variety of ice cream treats. The outside of the fridge would be covered with pictures of the kids and grandkids and their drawings as well as pictures of the children of a much younger woman who was only around during the times of fortune.

The cupboards held several years of Girl Scout cookies, cereal and crackers – mostly all expired.  The counters and stove were covered with a thin layer of grease, only removed when I visited since he had fired most housekeepers in town and those he hadn’t fired, knew to stay away. 

Birthday cakes had been cut and served on the island as had a Thanksgiving turkey or two.  On one of his birthdays, Dad had sat in a kitchen table chair and was adorned with a crown, a cape made from a blanket and confetti sprinkled on him by two of his young granddaughters. And then ventured out to a restaurant – still in costume – much to the delight of the girls.

The rest of the rooms of this empty, bank-owned house brought back as many memories.

In the family room, more pictures of the grandkids sat on the fireplace hearth and Christmas stockings hung half of the year. We got Robert settled on the couch after Dad’s funeral and he worked on his Word Search while dad’s older brother sat protectively next to him.

The living room was where Dad had sat years before telling me the FBI was spying on him; where he would sit and read or watch his gigantic television crammed into the little room because he thought the cable reception was better. It is also where Richard, Rachel and I found him only half awake and completely confused when his kidneys were failing him, only hours before he died.

This was also the room where his brothers and sister and Other Brother and I hung out, looking through pictures and telling stories after Dad had died.  

The front porch had been fixed and had a fresh coat of paint on it. Dad would call me from the front porch and tell me how he liked to put on his pajamas, lay down a blanket and sit on the porch watching people go by. I pictured him with his Diet Pepsi, cigarettes and wearing only his sweat pants staring at people as they walked by and wondered how long it would be before the police showed up.

This house held a few weddings – one or two of dad’s as well as that of Robert’s.  Robert was a young man in his twenties when he married a woman (who later turned out to be a thief) but on that day, Robert was happy. His smile was broad and he looked sharp in his tux. Other Brother and I were amazed at our little brother getting married since neither of us had thought this was in the cards for him. His marriage didn’t last much longer than the honeymoon but I will never forget the smile on Robert’s face before he went into the backyard to say his vows.

For a house I never dreamed would mean anything to me, it has filled my evening with memories of both good times and bad.  A few pictures of a non-descript house has filled my heart with love for a dad who was both exasperating and fascinating and who loved his family with all of his heart.

These few pictures have made me smile thinking of my daughters who are thoughtful and funny; brothers who I adore with all my heart and aunts and uncles who are thousands of miles away but as close to my heart as you can get.

The bank may get the house and they may recoup their investment since the market is improving but these memories – they don’t get those. 

Those are mine to keep and to remember with just a glance at a picture or two.

I Never Thought I Would . . .

It’s hard to believe my caregiving for Robert started five years ago. Before I became involved, our dad helped him with his finances.

Mother-in-law, Carol, with Robert

Which means when I took over caring for him I had to fix a lot of financial issues.

Caregiving for Robert has kind of crept up on me.

It started one Thanksgiving with Other Brother and I dealing with a homeless woman Robert and his companion brought home and who gave Robert a black eye. Around this same time, Robert was battling an infection and he was hospitalized a couple of times.

Other Brother visited him since he worked in the same city as Robert was hospitalized and I was in contact with his medical team.  Once he was discharged, I took Robert to a couple of doctor appointments. The infection kept returning and became life-threatening.

Then it was an avalanche of caregiving: a trip to the emergency room; emergency surgery; several weeks of IV antibiotics; discharge to a Skilled Nursing Facility; move to an Assisted Living Facility; a few more hospital visits – and that was all within four months.

Five years later, Richard (hubby) and I are caring for Robert full-time while he lives with us.

It is hard to believe all this has happened in five years.  It is also difficult to believe the things I do now that I never thought I would. 

This can only mean one things: it’s time for a list!

Before caregiving, I never thought I would . . .

• Be caregiver to Robert;

• Have a husband who was willing to help care for my disabled brother;

• Know so much about epilepsy (even though Robert has had it his entire life);

• Be strong enough to discuss Robert’s care and treatment options with his doctors;

• Be strong enough to stand up to an emergency room nurse who was giving Robert the wrong medication;

• Do so much laundry!;

• See Robert using a walker;

• See Robert making nurses laugh out loud with his jokes;

• See Robert live to middle-age;

• Spend more time with Robert than I do Other Brother (who I am much closer to);

• Be able to pronounce the slew of medications Robert is on. And be able to recognize them by sight;

• Mix water and juice with a powder so that it is “nectar thick;”

• Have so much Rocky Road Ice Cream in my freezer;

• Teach Robert how to be patient with a puppy;

• Give Robert a bath;

• Clean Robert after an accident. Every day. Sometimes several times a day;

• Watch my husband do the same;

• Enjoy Family Feud and Jeopardy as much as I do (shh! Don’t tell!);

• Know enough about Skilled Nursing Facilities and Assisted Living Facilities to help others;

• Did I mention all the laundry?;

• Wonder so much before going out if there will be an accessible bathroom;

• See my non-affectionate brother, Robert, hug my daughter when she visited recently;

• Wonder: Hey! Where’s my hug?!;

• Be a published author of a book about caregiving and family;

• Be an author of several articles on caregiving;

• Keep such an eagle eye on a cough and congestion – willing the bacteria to stay away;

• Make so many new friends who are all caring for someone with compassion and love or helping those who do;

• Give up my family room and downstairs bath to accommodate Robert;

• Slow down enough to let Robert participate in a conversation and answer questions;

• Fill so fulfilled from doing something I never had planned to do;

• Watch a beautiful friendship develop between Robert and my mother-in-law, Carol;

If you are a caregiver, what is something you never thought you would do?