Epilepsy Awareness Month: Grateful and Inspired

November is the “official” Epilepsy Awareness Month but epilepsy and seizures and caregiving don’t stop just because it is December. People live it every day, every month, every year.

Every moment.

The people I was able to interview this year know what I am talking about. These people have epilepsy or care for someone with epilepsy and somehow find time to also advocate and educate others. They still have time to follow their dreams, go to college, get advanced degrees and continue to live their lives day in, day out.

Epilepsy does not stop these people. There may be stigma and lack of awareness about epilepsy or what to do when witnessing a seizure but people who have epilepsy in their life don’t let that hold them back.

These people have grit!

I absolutely loved following up with the people I interviewed in November 2012. These people and their stories of resilience, persistence and tenacity are as inspiring as anyone could be.

I also was delighted to interview people I missed the first time around! These people are just as resilient, strong and persistent in their fight against epilepsy. (And, heads up, you know I’ll email you for a follow-up interview in four years). J 

My heart hurt to read the struggles that so many people face with epilepsy but I was also overcome with emotion when these same people persevered through terrible obstacles.

I was so inspired by these people who think of others, are kind and who do not give up. Ever.

Below is a brief recap of these exceptional people. Please click on their name to read their full interview.

Cathi Shaw, author and mom, has found that delicate balance of caring for her daughter who has epilepsy without being overprotective and is, in fact, extraordinarily supportive. Cathi has watched her daughter struggle with reactions to medications, start her own non-profit and win the Terry Fox Humanitarian Award.

Michelle Reichartz was first interviewed in 2012 and she has since moved to be closer to family, got her Master’s Degree and plans to pursue her Ph.D.! Epilepsy definitely does not stop this woman from following her dreams and finding success along the way.

Tiffany Kairos is a strong, relentless advocate for those with epilepsy. She educates others, shares her personal story and was nominated for the WEGO Health Awards, Best in Show: Twitter – which she won! Congratulations, Tiffany! Oh yeah, she’s also a badass.

How many people start a non-profit to help support families with children who suffer from epilepsy? There are several. How many do so without personally having a child with epilepsy? Probably one: Susan Noble. Susan and her foundation, Epilepsy Warriors, are doing great work for families with a child who has epilepsy.

Eileen Murray’s story struck a chord with readers. She cares for her son, Will, who at 23 years old has had epilepsy most of his life. They have tried numerous treatments for Will which is all too common of an experience for families. Will is a gentle soul with a fantastic sense of humor and, as Eileen shares in one of her stories, a heartwarming empathetic side.

The absolute brutal side of epilepsy is shared in painful detail by Christy Shake. Christy was interviewed in 2012 and she graciously gives us an update on treatments and progress over the last four years. Her personal blog, Calvin’s Story, is a must-read.

Teresa Stallone not only has epilepsy herself but cares for her mom who also has epilepsy. We followed up with Teresa from 2012 and do you know what her favorite moment has been these last few years? Finding a compassionate dentist and getting much needed dental work done. (Do not even get me started at the lack of adequate dental care for those who cannot afford it yet need it most. Anti-seizure medications can do horrible damage to teeth and general oral health.)

Sometimes epilepsy takes away our loved one, too. While epilepsy was just one piece of a whole host of issues that Mike and Lorraine Kimball’s son Mikie had, his health did not define who he was – or who they are. Mike and Lorraine are devoted parents and gave Mikie lots of love and protection in his 43 years here.

Then there is Connor Doran who has inspired me since I first saw him on America’s Got Talent. Connor continues to follow his dreams in spite of his epilepsy and the medication and epilepsy induced side-effects and has graduated with an AA, found the love of his life and was recently accepted to the University of Puget Sound (he had his fingers crossed for such a positive outcome when we interviewed him.) Congratulations, Connor!

Leslie Hammer’s story is one that rips my heart apart. She has overcome so many obstacles and sometimes that means just moving one foot in front of the other. But she does it and she does it every single day. Epilepsy needs a cure so Leslie and people like her can just be given a break.

Amy Schlenker has had to make some very difficult decisions in order to get her daughter, Paige, the treatment she needed to control her epilepsy. Can you imagine having to put your eight year old through her third brain surgery? And this one was a complete right modified functional Hemispherectomy! But it worked! I am not really in charge of these things but I hereby declare Amy Schlenker Mother of the Year!

Of course, I had to interview my brother, Robert Wright. I was just today having a conversation about Robert and his “excellent” attitude. Robert has somehow managed to live in the moment and to be content and happy with simple things. He also stays optimistic and is convinced when I interview him again in four years that “Probably I’ll get healed completely.” His faith is unwavering and he inspires me every day. I still have a lot to learn from him.

I also interviewed my husband and co-caregiver extraordinaire. 

Richard Kreis is just what Robert needs: a fellow jokester and Mr. Fix-It. I am delighted every day when I hear the two of them laughing and joking around. It drives me nuts sometimes when I’m trying to get a word in edgewise or talk about something serious but I couldn’t care for Robert without Richard. Plus, he’s a relentless advocate for caregivers!

Laurie Adamkiewicz is another mom who deserves Mother of the Year (for several years running now). Since I’m not really in charge of that award, I think it’s okay to give it away to several people. Laurie takes care of her son Kyle and has seen him and their family through some very difficult times. She was happily caring for two sons when one, at age six, started having seizures and ended up having up to 100 a day. That is life-changing. Laurie is a devoted mom and strong advocate and also a very talented photographer. Check out her website!

My last interview was with me (which is quite a trick!). I mainly wanted to answer the same questions I asked of others and to share how Robert has changed in the last four years. There has been a significant decline in his health but Robert lives with us now and it has been the best possible solution for all of us.

I am extremely grateful to have been a part of these interviews and to share these amazing people with you.

If you ever need a reminder of some of the inspiring people in this world, please re-read these stories and know that if you have epilepsy, you are not alone. If you care for someone with epilepsy, you are not alone. If you advocate for those with epilepsy, you are not alone.

Please share their stories so others know they are not alone.

Let’s change how people think about epilepsy and let’s do this together.

Epilepsy Awareness Month: Follow-up Interview with Connor Doran

I am so happy I was able to get a follow-up interview with Connor. He first came to my attention (and millions of others) when he made it to the top 12 of America’s Got Talent! His indoor kite-flying talents and endurance in fighting his epilepsy and dealing with being bullied made all of us admire and root for this kid.

Connor Doran
Indoor Kite Flying

Imagine my delight when I went out on a limb and asked him to participate in the 2012 Epilepsy Awareness Month interviews and he said yes! I was honored and impressed that the fame hadn’t gone to his head and he was willing to talk to some lady from Sacramento with a blog in order to help spread epilepsy awareness.

Connor is as busy as ever but took time to tell me what he has been up to the last four years and to share his life with epilepsy.

Robert’s Sister: I am curious what changes have occurred in the last four years. Please remind us how epilepsy has affected your life.

My name is Connor Doran and I have Epilepsy. I have been seizure free for the past 8 years; however, my girlfriend has seizures on a weekly basis so it is very scary for me to watch her have a seizure. I don’t have a lot of experience taking care of someone else when they are having a seizure but I am beginning to learn how to deal with someone else when they have seizures. I hope to get my first aid card.

Robert’s Sister: What is the most significant change in your life since our last interview?

Since the last time we talked I have moved to Seattle, Washington and I graduated from South Puget Sound Community College with my Associate of Arts degree. I hope to attend the University of Puget Sound in order to get my BA in Sociology so I can help other people who struggle with the same problems and are facing the same kind of discrimination that have happened to me. I have also met the love of my life who I hope to marry.

Connor and the love of his life

Robert’s Sister: Has the treatment changed for you or your loved one?

Treatment has not changed for me. My girlfriend who has Epilepsy as well just got a seizure dog back in June and we are hoping that her seizure dog will help keep her from falling and hurting herself whenever she has a seizure.

Robert’s Sister: What sort of cognitive, intellectual, emotional or physical changes have you noticed these last four years?

My cognitive, intellectual and emotional abilities have not changed since we last talked. I have built up a lot more muscle mass because I work out a lot. I say this because you can be the strongest person or smartest person in the world no matter who you are.

Robert’s Sister: What caregiving help do you use?

I am lucky enough not to need any caregiving help. I have a Smartwatch that detects if I am going to have a seizure and lets my family and friends know where I am if I have a seizure. The Smartwatch allows me to be very independent.

Robert’s Sister: Do you think your life with epilepsy has improved, stayed the same or become worse these last four years? Can you tell us why you think so?

Living with Epilepsy has stayed the same for me. It has not gotten worse and it has not gotten better. All I know is that it has given me obstacles to achieve what I want to achieve in life but that doesn’t stop me from achieving my goals and dreams and starting a life that I want. Remember you may have Epilepsy but Epilepsy doesn’t have you. 

Robert’s Sister: What has been your favorite moment these last four years? 

My favorite moment was when I graduated from college back in June. Because it gave me confidence that if I can graduate college with Epilepsy induced Anxiety than I can do whatever I want in life regardless of Epilepsy. 

Robert’s Sister: What do you see for yourself in the next four years?

My dream is for my girlfriend to move Seattle with me so we can get married and spend the rest of our lives at a luxurious house right on the Puget Sound and live happily ever after.

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

Just remember, you may have Epilepsy but Epilepsy does not have you. If you can dream it you can do it.

Robert’s Sister: Please tell us how we can contact any organizations you support or if you have a website or business.

My email is connordorankite@gmail.com and my website is http://connordoran.com/.

Oh this update makes me so happy! Congratulations, Connor, on graduating with your AA and for finding the love of your life! Thank you for sharing how much can be done, even after having been bullied, having epilepsy and overcoming all kinds of obstacles.

You are an inspiration!

My one and only disappointment is that Connor has not yet introduced me to Howie Mandel! J

May all your dreams come true! 

Trish

Epilepsy Awareness Month: Follow-up Interview with Tiffany Kairos

I am thrilled to have Tiffany Kairos in our space today! Tiffany was gracious enough to talk with me for our Advocating for Awareness and Answers series in November 2013 and I am grateful she is participating in the 2016 Epilepsy Awareness Month "Life with Epilepsy" follow-up interviews.

Tiffany Kairos shares her Life with Epilepsy

Tiffany and I have never met in person but getting to know her through her advocacy work, social media and these interviews has been such a delight! Tiffany is a kind, faith-driven, family-focused and strong advocate for those with epilepsy as well as those less fortunate.

She would never describe herself this way (because she is way too nice and polite to do so) but she is definitely a badass! Epilepsy, discrimination against those with epilepsy and any kind of bullying doesn’t stand a chance against this woman.

I think you will agree once you read more about Tiffany.

Robert’s Sister: I interviewed you in November 2013 and I am curious what changes have occurred in the last three years. What is the most significant change in your life since our last interview?

Since our last interview, I had much testing conducted and discovered that my type of epilepsy is Refractory Epilepsy. This gave me peace in knowing and motivation to fight back.

Robert’s Sister: Tell us about your advocacy work on behalf of those with epilepsy.

I'm the founder of the organization The Epilepsy Network (TEN), working passionately and diligently to provide education, awareness and community for all affected by epilepsy.

Robert’s Sister: What progress do you see in the treatment and research of epilepsy?

Each day, progress in the field of medicine and treatment is evolving and I am pleased to see this. I see more options becoming available for those who are running out of medicinal options or who would rather choose a more holistic route.

Robert’s Sister: What has been your favorite moment these last three years?

It's very difficult to choose just one favorite moment when there have been so many wonderful moments throughout these last three years. However, I would most likely have to say the moment I was given the opportunity to share my story on video for my church community and the world to see and having the opportunity to illuminate our town’s bridge in purple light.

(Note from Robert’s Sister: Grab the tissues and watch Tiffany’s inspirational video about her story here.)

Robert’s Sister: What do you see for yourself in the next three years?

I can't say for certain; however, I know that whatever it is, wherever we are, God will be with us and epilepsy awareness will without a doubt be involved.

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

I would like to tell anyone who is affected by epilepsy in any way that some of the most challenging situations we face in our lives are in fact refining us into much stronger, braver, bolder individuals. Hold onto hope. Don't ever let go no matter how hard things get.

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

You can contact The Epilepsy Network at www.theepilepsynetwork.com.

Tiffany didn’t mention this in her interview but I am happy to share that Tiffany was chosen as a finalist in the WEGO Health Awards, Best in Show: Twitter category. Be sure to follow Tiffany on Twitter! You can find her on Facebook as well.

Tiffany is a fighter and we wish nothing but great things for her and her husband, Chris. Thank you so much, Tiffany, for sharing your advocacy work and your story!

Trish

The Calendars are Here! The Calendars are Here!

After pairing the artwork of Pegi Foulkrod and the Words of Comfort by Denise M. Brown in a 2015 calendar and pushing the “purchase” button, I started to panic.

The picture doesn't clearly show the words but
they show up on the calendar. August words:
"Believe in yourself - others will follow."

I woke up in the middle of the night thinking I forgot to have it printed in color.

I had a nightmare that the text of the Words of Comfort didn’t show up properly under the art.

I worried I would own 50 beautiful wall calendars intended to be a fundraiser for CareGiving.com and no one would buy them.

And that was just the first day!

Okay, now that we all know how neurotic I am . . .

The calendars have come in and they are lovelier than I could have hoped.  Each month is an 8 ½ by 11 page which showcases the tender art of Pegi with excerpts from Denise’s Words of Comfort books. 

As I flip through each month, I am amazed at how well Pegi’s art works with Denise’s Words of Comfort.  They are made to be together. 

It is magical. 

Better yet, in the words of Robert, it is “excellent.” 

Denise's words:
"You have so much to dream about. Dream."

The calendars are a way to raise money for CareGiving.com.  Each calendar is $15 and half of that amount ($7.50) will go directly to CareGiving.com.  So far, we have sold a third of them.  I hope to have them all sold by year end so I can send Denise a Happy New Year gift of $375 from her supporters!

I guarantee you will not regret purchasing this 2015 calendar!

Thank you for your support! 

Epilepsy Awareness Month Recap

I thought I was going to take a break from blogging for a day or two after a month of posts but I can’t stop!

Okay, this will be short and there won’t be 30 minutes of video to watch (“Phew!” says Other Brother, who hasn’t quite caught up yet).

When I set out to do this video project, I wasn’t confident I could do one for every day.  I wanted to but wasn’t sure if I could pull it off (hence, all the disclaimers in the first post).  It is important to me to do something every November in support of Epilepsy Awareness Month and creating the videos seemed to be the most personal way I could explain the impact of epilepsy.  

In a third of people with epilepsy, seizures are uncontrolled.  Robert is part of this group and these are the people I want to focus on. As this group ages, what are the consequences of all those uncontrolled seizures, head trauma, medications and surgeries?

Robert is just one example of what can happen when seizures remain uncontrolled.  My focus on this is not meant to scare people who have uncontrolled epilepsy but just the opposite: Let’s focus on these difficult to control cases so we can raise awareness about what epilepsy does to a person over a lifetime. Let’s raise some money so research can be done on this group.

Let’s not forget about these people.

Let’s find a cure.

Let’s not give up.

Robert has not given up – not in the slightest.  He prays every day for his seizures to stop. Robert truly believes his seizures are getting fewer and he has hope and faith every day.

Every. Single. Day.

If Robert can have hope every day, if Robert can get up every day and be positive in spite of his legs not working as well as they used to or his labored breathing making it tough to talk sometimes then I can post a video every day for Epilepsy Awareness Month.

The links to each post are below. Please let me know if you have any more questions for Robert or about epilepsy and I will be happy to post a follow up video.

After all, I don’t want my camera to get rusty!

Epilepsy Awareness Month Day 1: Kick-Off to Epilepsy Awareness Month 2014

Epilepsy Awareness Month Day 2:  Surgeries and Seizures

Epilepsy Awareness Month Day 3: The Decision to Call 911

Epilepsy Awareness Month Day 4:  Just Two Guys Talking

Epilepsy Awareness Month Day 5: Talking About Medications

Epilepsy Awareness Month Day 6: Advocacy and Fun

Epilepsy Awareness Month Day 7: Everyone Loves a Parade

Epilepsy Awareness Month Day 8: Seizure Triggers and Routines

Epilepsy Awareness Month Day 9: Impact of Epilepsy on Caregiving

Epilepsy Awareness Month Day 10: It’s a Small World

Epilepsy Awareness Month Day 11: Driving and Epilepsy

Epilepsy Awareness Month Day 12: Epilepsy and Working

Epilepsy Awareness Month Day 13: Enjoying the Simple Things

Epilepsy Awareness Month Day 14: Ack! The Caregiver is Sick

Epilepsy Awareness Month Day 15: Friendships, Bonds and Blessings

Epilepsy Awareness Month Day 16: Epilepsy and Religion

Epilepsy Awareness Month Day 17: Photo Surprises

Epilepsy Awareness Month Day 18: Caregiving as a Team

Epilepsy Awareness Month Day 19: The Careful Dance of Sickness

Epilepsy Awareness Month Day 20: Memories

Epilepsy Awareness Month Day 21: Managing Incontinence

Epilepsy Awareness Month Day 22: Tips for a Successful Respite

Epilepsy Awareness Month Day 23: Spreadsheets, Spreadsheets and More Spreadsheets

Epilepsy Awareness Month Day 24: Mood and Medications

Epilepsy Awareness Month Day 25: Epilepsy and Dental Care

Epilepsy Awareness Month Day 26: Epilepsy Rant

Epilepsy Awareness Month Day 27: Gratitude

Epilepsy Awareness Month Day 28: Brotherly Love

Epilepsy Awareness Month Day 29: Q&A with Robert and Trish (Part 1)

Epilepsy Awareness Month Day 30: Q&A with Robert and Trish (Part 2)

Epilepsy Awareness Month Day 30: Q & A with Robert and Trish (Part 2)

It is the last day of Epilepsy Awareness Month!  I have learned so much from Robert this month and hope we helped others learn about epilepsy and about Robert. 

I am very grateful to everyone for watching the videos, reading the posts and supporting all of us in our mission to raise awareness not just about epilepsy but about the long-term effects of uncontrolled seizures. Robert, Richard and I greatly appreciate your support.

The last few questions were all for Robert and he took his job of answering them very seriously. (Of course, there were laughs and dogs thrown in as well.)

Question from Rachel: If you didn’t have epilepsy, what job would you want to have?

Robert thought about this and decided he wanted to work in an office but not in insurance sales (sorry, Dad).  Robert thinks he would have worked with numbers, like Other Brother.

Question from Rich:  What does it feel like to have a seizure? 

Robert talked more about the aura he feels before a seizure and how he is sometimes able to “fight them off.”  I have no doubt Robert has the strength to do this!

Question from Rich: What would you have done with your life if you didn’t have epilepsy?

Robert thinks he would like to read the bible more. He also mentioned wanting a book from Dr. Charles Stanley (a church program he watches every Sunday).  I guess I know what someone is getting for Christmas!

Question from Pegi:  How do you manage to stay excellent most of the time with all of your challenges? What advice would you give to other chronically ill people on how to maintain such a positive attitude?

Robert’s answers to both of these questions should surprise absolutely no one.  Prayer is what helps Robert and is what he recommends others do as well.  (Robert probably should have been a pastor!)

Question from Richard: How do you do fight off a seizure? 

Robert’s answer – he uses his strength and prays. 

Yep, Pastor Robert has a very good ring to it. 

Thank you again for watching, reading and supporting us this month. I hope we accomplished the goal of explaining the impact epilepsy has had on Robert.  It has been significant but it definitely has not been all bad as one might have expected. 

Special thanks to Robert for sharing his life with us.

Epilepsy Awareness Month may end today but our mission continues.  Please help us spread epilepsy awareness and education by sharing these videos and talking about epilepsy.

Thank you!   

What Seven Minutes Means to Me

Seven minutes is not a lot of time to do anything. 

Heck, 10 to 20 seconds isn’t any time at all to get anything on my to-do list accomplished but it is long enough for Robert to have his typical seizure.

Robert's helmet has taken a few good knocks

Head down and to the right.

Tugging on his clothes.

Hands twitching.

Giggling as he awakens.

If he is standing and has a seizure and there is no one behind him, he falls backwards to the floor (or against a wall or onto the toilet). Looking at the many scrapes on his helmet tells me that is the best piece of medical equipment he could have.

Robert doesn’t know when he has a seizure and will usually argue with me if I tell him he had one.  I stopped telling him unless he asks or he lands on the floor (he has had enough seizures in his life to realize if he wakes up on the floor, he had a seizure).

The typical seizure for Robert doesn’t involve convulsing and doesn’t usually last very long.  A couple of years ago and with his permission, I filmed one of his seizures to give people an idea of what they look like since his aren’t like they are portrayed in the movies.

Robert’s seizures are uncontrolled and I’ve always estimated he had probably five seizures in a week. It was really difficult to gauge because New Home never kept track like they were supposed to and would give me seizure logs showing maybe three seizures a month if I got a log at all.  I knew he was having more than that because he had them almost daily when he was with us on the weekends.

Now that he lives with us, I have been able to keep better track of his seizures.  It’s difficult to know if he is having more than normal because they weren’t always noted before he lived with us.  Either Richard or I are always with Robert and even if we aren’t, we are watching him on a video monitor.  I’m fairly confident we are aware of most of his seizures (although, at ten seconds a shot, it is easy to think we miss a few here and there). 

Since moving in with us, we have recorded Robert having at least two seizures every day.  Sometimes more than that but rarely lasting a minute or longer.  There’s a seizure in the morning while he is getting cleaned up for the day which I can prepare for (he’s standing when it happens so I’m prepared to catch him).  So far, that’s the only one that is predictable but I feel lucky there’s any consistency at all since one of the biggest problems with seizures is how they strike without warning. Sure, there are triggers which people can figure out but it’s never consistent (at least we haven’t found them to be).

Three to four minute seizures are really at the extreme of his “typical” range.  A few years ago, Robert had a cluster of long seizures just after moving into New Home. As it turned out, it was because Nurse Ratchet had arbitrarily decided to change his medication schedule to fit better with her own schedule.

I was about as happy about that as you might imagine.  

These blocks of time seem so tiny when thinking about any activity other than a seizure.

Ten seconds?  Who even thinks about ten seconds passing by?

Unless you’re counting or watching the stop watch, waiting for the seizure to pass.

Three minutes?  My husband can load and unload a dishwasher in that amount of time.  I can put a load of clothes in the dryer and a new one in the washer.  Crazy Puppy can eat his meal and our other dog’s meal in that amount of time. 

It can also be a very long wait for the seizure to pass.

Seven minutes?  I can get a lot done in seven minutes – make Robert’s bed in the evening and get started on play time with the dogs.  Robert can eat his bowl of Rocky Road ice cream in seven minutes. 

Robert had a seven minute seizure this week and it was extremely unsettling.  The stop watch kept ticking away the seconds, then minutes while his head bent down and to the right at the dinner table.  His hands twitched and he started smacking his lips.  At the ten second mark, I expected him to come out of it and begin to eat dinner.  Twenty seconds passed and I stood by him, watching. One minute went by and Richard stood on the other side of him in case he fell off his chair.

Robert continued to look to the right with his eyes closed, smacking his lips and twitching his hands.

Two minutes. Three minutes. Three and a half minutes.

The wait was excruciating.

At five minutes, I gave him an Ativan which we have on hand for just such a scenario.  It wasn’t easy since it is in a pill format but somehow, he swallowed it.

Two minutes later, he started to come out of the seizure.  After a few more minutes, he knew who I was and who Richard was but didn’t know where he was.

Several more minutes later, he was eating his dinner and declaring the meal excellent.

He was pretty groggy and sleepy the rest of the night but once he was in bed, I again asked how he was feeling and, of course, he answered, “Excellent.”

Seven minutes of a seizure was extremely scary and unnerving for me and my husband.  Seven minutes seemed to last forever for us. 

For Robert?

Seven minutes was not near long enough to take the excellent out of Robert.

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 http://thieflewybody.blogspot.com.

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 http://jbones1961.blogspot.com.

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 www.caregiving.com.

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 www.caregiving.com.

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.  

Goodbye 2011

Okay, I know it’s January 2, 2012 (already January 3 in some time zones) which means I’m a little behind in reflecting on the last year but I’m going to reflect anyway.  Sometimes as a caregiver (or as a mom or wife or any other role for that matter), things get a little busy and great intentions go out the window. 

I intended to do 2011 reflections on December 31.  A reasonable date for such things.  However, between hubby’s surgery (he's recovering nicely, by the way), bringing Robert to our house for the long New Year’s weekend and being just a tad tired, reflections  got moved to 2012.  Reflections at the end of 2012 just may get moved to 2014.  It’s hard to predict but be prepared.

I was a little apprehensive going into 2011.  Just days before, I had turned 50 and I was disappointed I hadn’t yet published the book I was working on for so long.  Don’t get me wrong, I enjoyed my 50^th birthday with a family celebration in my favorite place – Disneyland(!) but  I was being hard on myself for not finishing the book.  

Heck, I had worked on it for only ten years, maybe I should have been easier on myself.  J

I wasn’t sure what the new decade would have in store for me but I knew I was happy with my family, I was committed to caring for Robert, and I was employed.  I am thoroughly grateful for all of that. 

To my delight, 2011 brought so much goodness that I almost feel guilty about it!  It also brought some difficulties but that is to be expected (this is life, after all).

The good stuff first (in no particular order):

1.     I met some amazing caregivers through caregiving.com.  I accidentally found this site at the beginning of the year when I was trying in earnest to link my blog to related sites in order to grow my readership.  Caregiving.com isn’t a site to link personal blogs but instead offers opportunities to write about our caregiving situations and to develop friendships and gain strength and inspiration.  I also got a few tips on incontinence.  It’s pretty awesome.

2.     The blog was picked up by Sacramento Connect which is a network of local bloggers through the local paper, The Sacramento Bee.  Heidi (Atticus Uncensored) kept reading my posts and leaving me comments.  She loved reading the blog and she wasn’t even a relative!  We became online friends (and then realized, hey, we’re in the same city, we could become actual real-life friends).  So we did.  

3.     Heidi introduced me to a group of inspirational people who are entrepreneurs, artists, moms and bloggers.   I learn something from this group of talented people every time I read their blogs and am grateful to have them as readers here.   

4.     I published my book!!!  Much love and gratitude goes to my hubby, my daughter, Joelle Stone and Denise Brown for their undying support and gentle (well, sometimes not so gentle -- you know who you are) nudging for me to get this done.   And, it only took me ten years instead of eleven.  .  .  

5.     I learned about epilepsy.  Being the older sister of my 46 year old brother who has lived with epilepsy his entire life, you’d think that would be impossible.  It wasn’t!  I had a lot to learn and met some remarkable people (and organizations) along the way.  My own personal challenge to complete 30 days of epilepsy awareness was something I was extremely proud to complete and am already looking forward to doing it again this November.

6.     Robert moved from a Residential Care Facility for the Elderly to a smaller, more age appropriate group home.  (It turned out to hardly be a perfect fit but we’re working on that).

7.     I became a Staff Writer for Today’s Caregiver Magazine and branched out to another website to write as well (getting paid to write – wow!  A dream come true).  It’s a small start but I am thrilled to have to list some writing income on my taxes!  (Note to the IRS: it’s a very small start).

8.     I was interviewed a few times by Denise Brown of caregiving.com on Blog Talk Radio and was so nervous the first time I wouldn’t let anyone tell me if they would be listening (not even my own family who secretly listened in another room).  I sat in my home office, closed the door and talked with Denise, pretending it was just me and her on the phone.  I was so nervous I actually thought there was a good possibility I would pass out during the 30 minute interview (I didn’t; thanks for asking).  I was grateful I couldn’t be seen because I’m pretty sure my proclivity to blush when nervous would have been quite evident. 

9.     2011 was also full of reminders of what a wonderful, beautiful family I am blessed with.  We laugh, we enjoy time with each other (most of the time) and, most of all, love each other no matter what.

2011 had its difficulties (the big ones were extraordinarily heart-wrenching work decisions and health problems for my beloved mother-in-law) but I would like to let those difficulties stay in 2011 and focus on the positive moving into 2012. 

Wishing all of you a very happy and joyous new year filled with great possibilities for love, friendships and success (and many laughs along the way).