Wednesday, February 29, 2012

Epilepsy Scholarships

This is the time of year when students find out which colleges they’ve been accepted into (with the arrival of the coveted large envelope) or when developing those helpful Plan B life skills becomes necessary. 

It’s also the time of year when parents are either thrilled they have squirrelled away money in a still intact college fund in order to pay rising tuition costs or are terrified at the prospect of figuring out how to pay those heart-stopping tuition bills (and, believe me, they are heart-stopping!).

Scholarships can help and many go unused so it’s helpful to do some research to figure out what scholarship might be a good match.  Scholarships help students with a variety of specific requirements: plans to follow a certain degree program or living in a particular area of the country or, many times, having a particular health condition.  Having epilepsy or living with a family member with epilepsy is a requirement for some of these scholarships. 

So why am I writing about Epilepsy Scholarships when Robert isn’t going to college?  

Maybe it’s because my girls are graduating from college this year and I’m already nostalgic about completing FAFSA forms in hopes of finding some tuition relief;

Maybe it’s because Robert struggled so much throughout his schooling but insisted on taking classes at the local Community College once he (just barely) graduated from high school (yes – amazingly, Robert did go to college!);

Maybe it’s because a friend asked for help in finding scholarship information for a student at her son’s high school who has epilepsy.

Or maybe it’s my favorite college exam answer of all:   All of the above. 

A few scholarships I found are listed below which, hopefully, will find their way to someone who needs it, making their college dreams a reality. 

1.       The College Scholarships Organization lists several scholarships available to students with epilepsy.   Visit their website to learn more about the specific scholarships available (all are for those living with epilepsy and some are also specific to a geographic region). 

2.       The UCB Family Epilepsy Scholarship program deadline is coming up April 20, 2012.  This scholarship is available to both those with epilepsy or for those who have a family member with epilepsy.  Visit the website for information on the application requirements and how to apply online.

3.       The Epilepsy Foundation of Northern California provides information about the Paul E. Smith Memorial Scholarship Fund.   Applications are accepted through April 30, 2012.  Paul’s parents write, “The main goal of the Paul E. Smith Memorial Scholarship Fund is to provide financial assistance to qualified applicants with epilepsy so they can pursue their life’s dreams.”  

4.       The Epilepsy Foundation of Greater Los Angeles states, “A few modest college scholarships are available for teens and adults with epilepsy seeking higher education in university, college, technical or trade school. The scholarship recognizes students who have demonstrated academic proficiency, actively pursue seizure freedom and successful management of their epilepsy, and are actively involved or committed to become actively involved in the epilepsy community.”  For more information on their specific scholarships, please visit their website.   

5.       The Heath Resource Center located in Washington D.C. describes itself as an “online clearinghouse on postsecondary education for individuals with disabilities.”   The Heath Resource Center “gathers and disseminates information to help people with disabilities reach their full potential through postsecondary education and training.”  Visit their website to see if any of their programs can help.

Please let me know if you were able to share this information with anyone and also if anyone gets one of these scholarships!  I would love to share a success story or two. 

Thursday, February 23, 2012

Caregiving Heroes

Today isn’t National Caregiver Day (I think that’s in August).  February isn’t even National Caregiver Month (that’s definitely in November – mark your calendars!).  Today is just a day that I would like to introduce you to a few extraordinary people who are extraordinary caregivers. 

Because I’m all about getting bonus points, I’m going to start with my Hubby.  Yes, he’s a caregiver too!   Hubby isn’t the only male caregiver around, though.  The number of male caregivers has doubled in the last 15 years.  Some of these men are caring for their wives but others, like my husband, are caring for a parent.

My husband is included in my list of Caregiving Heroes not just for the bonus points but because he so lovingly and diligently cares for his mom.  It helps that she’s a wonderful woman and pretty darn tough lady who had a stroke not too long ago, who continues to have heart problems (and is looking at a valve replacement surgery in the near future) and is diabetic.  Hubby takes her to doctor’s appointments and tests and to the hospital when needed.  He doesn’t leave her side when she’s hospitalized and he has created a thick binder full of every bit of medical information any of his mom’s doctor may need to know.  He’s organized and persistent which are two of the best characteristics a caregiver can have.  He also loves his mom very much and enjoys the time they spend together at the appointments or having lunch or coffee in between appointments.  He’s a pretty awesome son and one of my caregiving heroes.

(I wonder if this is the best time to ask when our baseboards are going to be finished).  Well, maybe not  . . .

It may not come as a surprise but caregivers are everywhere.   We have two in our own household.  The cashier at the local drugstore is one (I was buying nighttime briefs from Robert and the cashier mentioned he was a caregiver for his grandparent).  I have employees at work who are caregivers. 

Look around in your life and you will either know a caregiver or know someone who knows a caregiver.   There are many, many caregiving stories out there.  All of them are ordinary people going about the business of life in an extraordinary way.

Aside from my husband, let me introduce to you a few more of my caregiving heroes.

1.     Kathy.  Kathy cares for her husband who was diagnosed four years ago with Lewy Body dementia.  He is also a Veteran with PTSD and she cares for him at home even though he sometimes doesn’t know who she is or where they are.  He sometimes accuses her of kidnapping him.  She reassures him, she loves him and she keeps him safe.   She also has a terrific sense of humor and can make me laugh with her caregiving stories.  You can read her story at

2.     Jane.  Jane’s 17 year-old daughter was diagnosed two years ago with a heart defect that had gone undiagnosed since birth resulting in her developing Pulmonary Hypertension.  Their lives were turned upside down and Jane has had to juggle insurance and financial problems, medication battles on top of the heartbreak of seeing her daughter struggle to breathe and try to live a normal life.  Jane did not put her head in the sand once her daughter got the devastating news but, instead, has become an advocate in the PH community and writes about their story in the hopes of helping others with PH.  Please read their story at

3.     Bette.  Bette and her husband are raising three children while also caring for her mother in their home.  Bette’s mom is in the severe stages of dementia and Bette does everything to ensure her mom is safe, comfortable and knows she is loved.  In doing so, Bette is teaching her children about compassion, devotion and love.  Bette is doing her part to make the world a better place.  Bette blogs about her experiences at

4.       G-J.  G-J’s husband was diagnosed with Mild Cognitive Impairment in December 2009.  A kick in the gut for a man in his mid-50s, happy in his career (which he had to give up) and with a son in high school.  G-J and her husband did not wallow or despair in the diagnosis.  Both have become involved in fundraising and education efforts through their local Alzheimer’s Association and are also raising a compassionate and empathetic son.  G-J also blogs about their experiences at

These women (and my husband) are not comic book super heroes or larger than life movie stars.  These are regular people doing the extraordinary: caring for a loved one out of sheer love.  At the risk of being a bit dramatic, I will say they not only change the life of their caree, they make the world a bit of a better place with their compassion and empathy and care. 
Not surprisingly, there are too many caregiving stories to list in one post.  There are several more caregiving heroes to introduce which I will do in a later post.  For now, please take a peek at these caregivers’ stories and share your own caregiving hero in the comment section.  

Thursday, February 16, 2012

Finding the Excellent

Robert has been really happy lately.  I mean super happy.  He isn’t one to express a great deal of emotion (probably a side effect of his medication or seizures) so his response to everything is usually “that’s nice.”

He’s been a bit more animated the past month or so and describes everything as “excellent” which is then followed by a giggle.

It makes me wonder what he’s up to.

What is making Robert so darn happy?  (Yes, I over-analyze everything and so am on a mission to figure out the source of this extreme happiness making everything “excellent”).

There are several possibilities:

1.     He's been staying at our house each weekend since Thanksgiving (and every other weekend for months before that).  We have dogs he pets and coos at; he is able to watch marathons of Jeopardy or Wheel of Fortune or Murder, She Wrote; he gets his favorite foods (any kind of meat and Rocky Road ice cream).  What’s not to love? (well, maybe the crappy mattress on the sofa sleeper, but other than that . . .)

2.     Robert has settled into a routine.  I stopped visiting him at New Home through the week so he is able to go about his usual routine without me interrupting his shower or dinner or bedtime ritual.  There’s a lot to be said for routine (speaking of which, my dogs are letting me know it’s almost treat time!).

3.     He absolutely LOVES his Day Program.  Robert has made many friends, eats lunch with his buddies, watches movies and goes on field trips. Plus they have a party every other week for something or other (always with cookies or other delicious goodies).  Sounds like a day full of excellent!

4.     He finally has cable at New Home.  This may seem inconsequential to anyone else but to Robert, it’s huge (actually, I’d miss my cable too).  Having the ability to watch his favorite shows in the evening while snuggled in bed is part of Robert’s routine.  When New Home disconnected the cable, he was lost. I raised a ruckus and, after taking way too long for them to get the necessary approvals for it, his cable is back.  Do not underestimate the power of Jeopardy to tip the scales to “excellent!”

5.     Rocky Road Ice Cream and lots of it!  Seriously.  Isn’t everything excellent with chocolate or ice cream (or, better yet, a combination of the two?).

6.     He physically feels good.  He hasn’t been in the hospital for several months (knock on wood), he hasn’t had the flu (again, please knock on that wood!) and he hasn’t had back pain in quite a while (which is a miracle considering that sofa sleeper mattress is only 3” thick).  It’s pretty amazing how the world seems a bit brighter and more excellent when you physically feel well.

There could be many other reasons Robert's life is excellent because Robert has turned out to be a pretty positive and happy guy.  Whatever the reason for his giggles and the “excellent” review of everything, I’m just happy he’s happy. 

And, that’s pretty excellent.

What makes you have an excellent day?  Better yet, what makes you giggle?

Tuesday, February 14, 2012

Everyone Wants a Little Love

Happy Valentine’s Day!  (And to my east coast friends reading this tomorrow: Happy Day After Valentine’s Day!).

Robert didn’t come over this past weekend because Hubby and I had a family birthday party to attend out of town.  New Home took Robert and his roommates bowling and kept him so occupied, I didn’t hear from him all weekend.  I did visit on Sunday to stock him up on 7-Up and razors (thankfully, he still has plenty of pens!). 

When I saw him on Sunday, he told me he was able to watch church (yay for the cable install!) and he told me he got the highest score in bowling.  He said the weekend was “excellent.”  Lately, Robert has moved from describing things as “nice” to “excellent” so I’m thinking he’s pretty happy. 

He was in a joking mood and as his older sister I get to tease him a bit, so reminded him Valentine’s Day was in a few days and maybe he’d get a girlfriend at his Day Program.

“I wish I would,” was his all-of-a-sudden very serious response. 

Ouch!  Someone take away my Big Sister card.   I certainly wouldn’t have teased him about having a girlfriend if I had known love was weighing on his mind. 

Robert has known love in his life.  He was with Judy (who also has epilepsy) for more than 20 years and they lived together, took care of each other, loved each other and would have married had it not affected their Social Security benefits. 

One of the hardest decisions I’ve made in caring for Robert was separating him from Judy when it became apparent he could no longer safely live independently.  Once I moved Robert to Sacramento from his home 90 miles away, our dad brought Judy to visit.  That only lasted a few months before Judy called Robert to say she didn’t love him anymore and she wouldn’t visit him any longer. 

Robert was deeply hurt.  Robert’s emotions are usually fairly even (he doesn’t get too excited or upset about things) but I suspected he might act out since this was such a huge event.  I explained the situation to the facility he was living in and warned them he might act out but they were still surprised when he did act out by getting angry with another resident and a nurse.   

That was two years ago and Robert still calls Judy on occasion.  They talk briefly but they no longer have the connection they shared for 20+ years. 

Having a girlfriend is important to Robert.  When he moved from his old facility, he was asked what he’d like to have at his new home or his new Day Program.  What he said was, “I’d like to have a girlfriend.” 

Robert is safe and healthy now, he spends most weekends with us so he isn’t without family, and he enjoys his Day Program and has several friends and thinks that events and food are “excellent.”  Robert is one happy guy.  

The only thing missing right now is a little bit of love.  Everyone wants to be loved and to have someone to love and I have faith love will again find Robert.  

I would be delighted to have you share your love stories or your search for love in the comment section!

Sunday, February 12, 2012

You Can Help a Caregiver!

I have, for the most part, been out of the blogging and social media world for so long it feels as if I fell off a cliff (my worst nightmare, by the way).

At least it felt like a long time.  It must have been months, right?

Upon further examination, it turns out it’s been less than two weeks since I spent a good amount of time on either site!  (Sheesh, how did I get so addicted to Facebook and Twitter?)    

Nothing bad happened to cause my absence, thank goodness.  In fact, it was just that I had to hunker down to finish a very special project I have been working on. 

I am thrilled to share with you the publication of a new book, CareGifters Book Series: Help, A Collection of Essays by Those Who Care.  This book is full of essays and a poem from caregivers as well as a journey of one special caregiver, Kathy, who took us through the before, during and after of her respite. 

CareGifters Book Series: Help, A Collection of Essays by Those Who Care also includes art work from the First Annual Art Show.  I edited and published the book and was more than a little excited that it didn’t take me ten years to finish as it did for my own book, Forever a Caregiver. 

(That was a lot of pressure but at least my average is getting better.  .  . )

CareGifters Book Series: Help, A Collection of Essays by Those Who Care is available in PDF or hard copy and can be purchased here (the PDF is only $5!).  Aside from the excitement of finishing the project in less than ten years, I am pleased to announce the proceeds from the sale of this book will go to help a caregiver!   

Let me explain . . .

Denise M. Brown launched the website in 1996 and has helped numerous caregivers since that time.  Last year, she created the CareGifters program.  As Denise says, “As often as we can, we send $500 to help a family caregiver in need.  Because, when you ask for help, we want to be there for you.”  That’s the kind of website Denise has created – supportive, helpful, informative and educational.

We plan to publish four of these books each year, touching on different themes in caregiving.  Our next theme will be “comedy” (which may not seem like an appropriate theme for the serious business of caregiving but if you are a caregiver you know that caregiving can involve some very funny situations). 

We want to make people smile so we need your stories!  Submission details for the next CareGifters book can be found here.   I would love to see your story in the next CareGifters book (and, since I know the editor, I might be able to pull some strings).
Now I have to catch up on Facebook and Twitter – the withdrawals are killing me!