Kindness – Every Little Bit Helps

It is sometimes difficult to believe in the goodness of the human race when there is such evil, violence and despicable acts splashed across most news sites.

A fond memory of mom

It can be difficult to see the goodness even for a Pollyanna like me, especially if I’m feeling under the weather – which I am due to a dental implant gone wrong.  As my daughter succinctly pointed out, I have become one of “those” stories – the horror stories people repeat to each other about medical procedures gone as wrong as you can imagine.

Here I am on pain medication and antibiotics with a raging infection in my mouth, swelling in my jaw and on a forced diet because I can only open my mouth wide enough to fit in the tiniest bits of a peanut butter and jelly sandwich (on the softest bread possible and absolutely no crust because even that is hard to chew).   

I guess pizza is a bad idea for dinner tonight.

I’m trying to get some work done from home today but it’s difficult to avoid the news.  The situation in Ohio is nothing short of horrific which is one reason we want to crown a hero.  People want to balance out the evil – let’s see some good!  Yay!  The women were saved by someone not afraid to get involved and not willing to ignore screaming from the neighbor’s house.  We have a hero! 

Then, for some odd reason, we want to dig up all the dirt possible on this man.    

Guess what?  People are not perfect.  People make mistakes – big mistakes (and, believe me, spousal abuse is a big mistake).  These mistakes cannot define a person, however.  These are pieces of a person’s life – some good, some really awful. 

I really don’t know anything about Charles Ramsey other than he, along with Angel Cordero, is credited with helping Amanda Berry escape her tormentor.  That is kindness.  Their efforts go a long way toward restoring our faith in the goodness of humans.  Maybe it even helps him make peace with his past mistakes. 

It’s such a simple concept: Be kind.  Spread kindness.  Do something kind for someone.  It doesn’t have to be huge because the ripples of kindness go beyond what we can even imagine. 

I believe people want to be kind.  Everyone wants to make a difference – to have an impact and to find a purpose to being here.  When my mom was dying of liver cancer, she struggled to know what her purpose had been.  She wasn’t famous or even outgoing but she was kind.  While she wondered what her purpose was, she tipped the cashier at the McDonald’s drive-thru.   She packed a bag full of groceries out of her cupboards when her daughter was struggling as a single mom.  She even threw in a box of dryer sheets because her daughter thought it was too extravagant to spend $3.50 on dryer sheets when every penny counted.

Throughout her life, Mom had also been depressed, suicidal and drank too much boxed wine.

None of these pieces of her solely defined her.  She was made up of kindness and a complicated life and poor coping skills.  In the end, it was her kindness that won out. 

We visited her favorite beach before she died and she made friends with a small boy who decided Mom was the one person on the entire beach he wanted to share his starfish with.  She spent time with him and made that moment on the beach memorable for me, watching my mom exude kindness.   Who knows how that kindness rippled through the boy’s life (or mine)?

 These small bits of kindness add up and make it easier to believe in the goodness of people. 

Let’s find the goodness and kindness in ourselves and share it with the world.  Even in bits as small as my peanut butter and jelly sandwich. 

Happy Mother’s Day, mom!  Your kindness is missed. 

What Epilepsy Means to Me: Other Brother and Robert

Happy Thanksgiving to all of Robert’s Sister’s readers!  Thanksgiving is my most favorite holiday because it is all about family and, well – let’s be honest. It’s also because there’s pie. J

Thanksgiving is an appropriate day for this special interview. Rich, otherwise known here as “Other Brother” is the middle brother between me and Robert. Rich and I are 21 months apart and have always been close. I actually have a memory of him (or at least I created one) of him being brought home from the hospital and thinking he was my very own, live doll!  It was a dream come true!

Mom would tell me that she would find me in the crib with Rich many mornings, just playing and keeping him happy.

We stuck together through some difficult family moments (which you can read about in my first book, Forever a Caregiver) and I am forever grateful for his quiet strength during that time.

As close as we are, some of what Rich shares in this interview about Robert was a surprise to me.  Reading this brought me to tears which is apparently my normal state these days!

I’m absolutely delighted to introduce you to Other Brother.

Robert’s Sister:  When was Robert first diagnosed?  Tell us about the process of getting the diagnosis. 

A silly sibling moment. (l-r)
 Robert, Rich, Trish

I wasn’t involved in the process.  I think I was in the 6th or 7th grade, and Robert would have been in the 3rd or 4th grade.  He missed a lot of school that year due to all the doctor visits (including a trip to Switzerland).  He had to repeat that grade.

Robert’s Sister:  How did you feel when Robert was first diagnosed with epilepsy?

At first, he had a mild form of epilepsy.  He didn’t black out or lose his balance.  He would see pictures in the corners of his eyes.  He seemed normal to me (well, as normal as any nine year old boy could be) but all the adults were saying how serious this was.  His epilepsy progressively got worse, though, and he started having multiple seizures a day, even with all the medications he was on.  I soon realized that he would not have anything like a normal life, and I became very sad for him.

Robert’s Sister:  Did your family treat Robert differently after the diagnosis?  If so, how?  

Initially, he wasn’t treated differently, other than our parents taking him to different doctors and hospitals trying to find a cure.  Later, as his seizures became more frequent and he would lose his balance, we became more protective of him.  When we were around, we tried to make sure he was in a safe place (such as sitting down) in case he had a seizure.  He couldn’t drive a car or swim.  However, our father wasn’t quite as protective as the rest of us and allowed Robert to do some things he shouldn’t have done, such as swim without supervision.

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

It was tough for Robert in middle and high school.  During this time, not only did Robert have to deal with his epilepsy, but our parents divorced during this time, and we wound up moving to a new state.  Robert was always very social, and it was usually easy for him to approach people and make friends.  But at the new middle school in the new state, Robert became depressed and had severe anger problems.

Robert’s Sister:  What treatments has Robert tried?   What has worked?  What hasn’t worked? 

Robert has been on multiple, daily medications since his first diagnosis some 40 years ago.  The doctors periodically try new medications, but nothing has been able to fully control his seizures.  For most of his life, with the medications, the seizures are “only” a few times a day.  There have been times when he has gone several days without a seizure, and Robert would proudly declare how many days it has been since his last seizure.  Without the medications, Robert would have continuous seizures and would need to be confined to a hospital bed.  It is amazing that the medications have been able to do what they do.

Robert has tried various surgeries as well, but nothing has made a difference.

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

When he first started taking the medications, we noticed he became more moody.  As he reached his teenage years, he became more angry and depressed.  It was difficult to tell whether this was due to his medications or if it was just his personality.  Both of our parents had bad tempers, so it was hard to tell with Robert if it was the medications or if it was just something that ran in the family.

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

I haven’t done any advocacy work.  My sister does quite a bit, though.  She has an excellent blog! [Editor’s note: Thanks, bro!]

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

Epilepsy has not affected my life, but has severely affected Robert’s life.  He has not held a driver’s license.  He has never been able to get a job.  He did volunteer work for a while at a care facility for the elderly, but the organization made him stop because they were concerned about him injuring the residents.

Robert’s Sister:  What is your favorite memory of Robert? 

Before he started having his symptoms, Robert was a real terror.  He was an extremely hyperactive young boy, and an annoying little brother.  Looking back, those are my favorite memories of him.

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

I’ve never told anyone this before, but from the time Robert was diagnosed with epilepsy, until I was in my mid-20’s or so, which was a period of about 15 years, every birthday wish I made, every wish I made upon a star, every wish I got from breaking the turkey’s wishbone, was a wish that Robert didn’t have epilepsy.  I eventually moved on to other wishes, but I still wish he could be cured tomorrow.

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

If you are reading this and you have epilepsy, please know that I have the utmost respect for you.  The challenges you face and overcome are nothing short of incredible.

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

Keep reading my sister’s blog!

Robert’s Sister:  Thank you, Rich, for sharing your story of Robert with us. I appreciate you sharing openly about growing up with Robert. You are an amazing brother – now, please pass the pie! 

And, how about taking another shot at that wishbone?  

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.

Grief Wrapped in Five Pounds of Adorable Fluff

This was a rough week.

When we returned from vacation, Other Brother returned our Toy Pomeranian, Sassy, to our care.  For 13 years, we have shared custody of Sassy who had been our mom’s love of her life.  During their short time together, Sassy was a permanent fixture in the crook of Mom’s arm loving her and spoiling her unabashedly.


Miracle Dog (Photo Credit - Matt Stevens)

Mom died when Sassy was just three years old and the connection they had was felt the night Mom left us.  I even wrote about it in Forever a Caregiver:  

“I crawl back into bed, lie on my side and curl my knees up to my chin. I pull the blanket around me, closing my eyes to sleep again.

“In what seems like just a minute, I wake up to the neighbor’s dog barking and Sassy’s collar jiggling. I glance at the clock and it’s been an hour since I talked with Mom. I sit up to look at her and notice she is not breathing. I wait for a minute to be sure, listening in the quiet stillness of the house, not wanting this moment to be here yet. Hoping I am dreaming or not listening carefully enough. I wake up Rich so he can help me decide if Mom is breathing or not."

I believe Sassy knew when Mom was leaving us.

One of Mom’s final wishes was for Sassy to live with Other Brother.  Her thinking was that we had too many animals at our house already and her Sassy wouldn’t be given the level of attention to which she had become accustomed. 

That, and apparently, we didn’t pick up the other dog’s “business” in our backyard often enough.  Sassy needed full-time attention and a pristine backyard, according to Mom.

My Sister-in-Law was none too pleased about this deathbed wish.  She tells me if she had one or two more days with Mom, she would have been able to change her mind. 

It was not to be so Sassy lived for many years with Other Brother and his two kids while Sister-in-Law and the little “Princess” (as we eventually dubbed her) tolerated each other.  Our home became the Summer Home for Princess Sassy when Other Brother and Family vacationed. 

There was no shortage of love and attention given to this five pound of gorgeous fluff from either household.

Eventually, Sassy came to live with us full-time.  It happened gradually and Other Brother and I were convinced Mom would be fine with the arrangement (last wishes, notwithstanding).  Sassy was the boss of our house and let our Black Lab know that when he joined our household.  (Watching an 80 pound dog quiver and sit with his back turned to the little Pom he just met staring him down, was quite the site.)

Sassy turned sixteen this summer and was starting to show her age.  She had lost her hearing, had eye problems and, at the beginning of summer, was diagnosed with a collapsed trachea.

Sassy was no stranger to miracles, though, and we hoped we could keep her for a few more years.  Just four years earlier she had a terrible stroke and the vet was convinced she wouldn’t pull through.  In fact, we arrived at the clinic thinking we would have to put her down to keep her from suffering and she popped out of the oxygen cage as if nothing had happened. 

She was our miracle dog.

When we were on our recent vacation, Sassy stayed with Other Brother and his family.  They were happy to spend time with her again (yes, even SIL).  When we returned, Other Brother said Sassy had developed a cough with in the last few days.  We took her to the vet who gave her medication which seemed to help.  Within a week, however, she started to go downhill – fast.  She stopped eating and drinking and looked awful. 

We took her to our regular vet who diagnosed pneumonia and kidney failure.  If we were going to consider extreme measures, she would need a 24 hour ICU.  We whisked her to the clinic which gave her the miracle four years earlier and hoped for yet another miracle.  I didn’t want to be greedy and take too many miracles but this dog meant so much to all of us. 

Please, please, please give Sassy another miracle.

While we were pleading for a miracle, I know Mom was making a plea of her own:

“GIVE ME MY DAMN DOG ALREADY!”

Holding Sassy while she labored to breathe, even while on oxygen, was heartbreaking.  Instead of pleading for a miracle of more years, I wanted days.  My daughter, who was still on vacation and in the middle of the Atlantic, wouldn’t be home for four days.  My daughter, who I dubbed Dr. Doolittle when she was three years old because of her ability to connect with animals, loved Sassy so much and I knew how heartbroken she would be. 

Could Sassy hang on for a few more days?  Not without suffering which none of us wanted.  We made the gut-wrenching decision to let Sassy go and to end her suffering.  Other Brother assured me it was the right decision. 

My husband and I held Sassy in her final moments and, while we both were crying, I became wracked with sobs.  They surprised me with their intensity yet I had no intention of stopping them.

The sobs continued and I recognized them as the grief for losing a dog I loved with all my heart. 

I recognized the sobs as the grief for losing a connection to Mom which I had held on to for 13 years.

I recognized the sobs as the grief I felt for not being able to save my Dad from his own kidney failure. 

The sobs were heavy and loud and I made no attempt to quiet them.  This grief needed to be heard and I wasn’t standing in its way. 

I let the sobs come because they were doing me no good bottled up inside. 

The sobs rode their course yet my grief is still with me.

When my daughter arrived home, I dreaded telling her the news but I did get through it.  It was her turn to let grief envelop her. 

We’ve shared more tears and hugs and memories and will continue to do so as the days and months – even years – go by.   

For now, I’m comforted knowing Mom is happily reunited with her beautiful, spoiled princess. 

I also realized Sassy did have one more miracle in her and that was to allow me my grief.  For that, I will always be grateful to the adorable five pounds of fluff.

Spilling the Family Secrets

After my mom died, I started writing a book about caring for her through her earlier depression and then as she succumbed to the cancer mercilessly thriving within her.  It took me ten years to write which, even by my perfectionist standards, was a tad on the lengthy side. 

I did wonder why it took me so long to write.  Sure, I had the usual (okay, the excessive) disclaimers but maybe there was something else that hindered my ability to finally call it “done.”

This book was something I was bursting to write.  I hoped the experiences I shared of growing up with a depressed mom and (most likely) bipolar father would help others in similar situations. (Having a brother with epilepsy didn’t even seem not “normal” to me).

As a family, we kept these things to ourselves and took care of the inevitable problems that resulted from these challenges ourselves. 

Then I wrote a book . . .

Both Mom and Dad had died when I published the book.  Dad knew I was working on it and assumed he would figure prominently and even joked about some of his most outrageous antics that should be included. He had started to read a few things I had written before he died but was always either effusive with the encouragement or indifferent.  (Dad never experienced what it was like in the middle of the road – always to one extreme or other). 

In the back of my mind, I was concerned about hurting his feelings with the book.  I was also very aware of how Mom would feel about it if she were still alive.  (I can see how this stops people from writing memoirs!).  I knew the book was written with love but didn’t want to hurt anyone’s feelings.  Growing up in a family concerned with appearances, this was a huge struggle for me. 

There isn’t forgiveness in the book but only because there is nothing for me to forgive.  We went through suicide attempts (Mom) and 3-day mental health holds (both Mom and Dad) but they had always tried their best so why would I have to forgive them?  There was nothing to forgive.  What we experienced was just part of what happened in our family, without malice, and I knew we all loved each other.  Forgiveness was an unnecessary part of the experience. 

I quieted my internal disclaimers and my concerns about hurting anyone’s feelings and hesitancy to spill the family secrets. 

I took a deep breath and published the book.

Then people started buying the book. Friends, acquaintances and extended family. 

Oh crap.  The extended family.

What would they think?  I loved my extended family and would never do anything to hurt them.  How would they feel about me opening the basement and letting everyone see what was down there? 

I don’t know for sure yet.  I did receive a very heartfelt letter from a couple members of my extended family. They both read the book and shared with me some tragic parts of their lives that I hadn’t known about.  I was honored they shared their own childhood experiences with me and hope sharing those experiences helped them in some way. 

Everyone has a story to tell and I like to listen to these stories.  My intent in telling my own story was to tell it with love and understanding and to let others know they are not alone with their family secrets – no matter what those secrets are.  What happened in my own family is nothing compared to what others have experienced but we all have something. 

Since publishing Forever a Caregiver, I’ve heard from many people who have said my book helped them realize they were not alone because they had similar childhoods.  They’ve told me this book that took me years to not only write but find the courage to actually publish, has helped them process their own experiences. 

These responses and those from my immediate and extended family make this ten year investment completely worth it. 

If you have a story (or family secret) to share, I would love to listen.  Acknowledging these experiences and sharing them can take away the hold they may still have on you. 

If you’d like your own copy of Forever a Caregiver, please visit here. 

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 Caregiving.com 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 Caregiving.com 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!

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).   

We Have a Winner!

This was the first year I participated in the caregiving.com Holiday Progressive Blog Party and I am already counting the days to the one next year!  Hubby baked sugar cookies and habanero cheesecake and (gasp) Lemon Bars for the occasion (well, he actually baked all that for a family Christmas Party we attended yesterday but I’ve enjoyed a few lemon bars while reading blogs). 

Okay, okay, fine.  I admit it.  More than a few. . .

During the Blog Party, I was introduced to a few new caregiving sites (Care About You; Caregiving Library; A Day in the Life; Intentional Caregiver; Jersey Jenny and SandwichINK) and continue to support and admire the work done by Denise Brown at Caregiving.com.

Along with reading great blogs, we had prizes this week!  From the caregiving.com site, NJ won an autographed copy of my book, Forever a Caregiver (I may add in a few extra goodies to her gift bag just because it’s the season to do that!). 

Also, as promised, I picked a winner from the commenters on my site this week and the winner is (imagine a drumroll, please): June Sockol.  June also writes (excellently) at Life of a JuneBug about, as she says, her “life as a mom-preneur to an autistic son.”

June also wins an autographed copy of Forever a Caregiver.  June just may find a few extra treats in her gift bag as well, although, I’m going to have to keep those Lemon Bars for myself!

Congratulations to the winners!! 

If you’re looking for a Christmas gift to give to a caregiver (or to someone who just likes to read about crazy families), Forever a Caregiver continues to be on sale until December 14.  Enter the code BUYMYBOOK305 at checkout. 

Now, off to sneak another Lemon Bar or two . . .

Book of the Month

Wow! I am honored, thrilled and grateful to have Forever a Caregiver chosen as the October Book of the Month Club pick on Caregiving.com.

Denise Brown, founder of Caregiving.com, will talk with me about the book tomorrow (Tuesday, October 25) at 12:00 p.m. PDT. You can listen here.

Forever a Caregiver is a book that took me ten years to write but was actually a lifetime in the making. (Still – 10 years? Sheesh!). Denise was one of the many people who encouraged me to publish this book and who ignored my disclaimers along the way (I can be quite persistent with my disclaimers). I am very grateful to Denise, my family and friends for helping me see this book through to completion and publication instead of indulging the coward in me and letting me safely keep it to myself. My hope is that others will see their own family experiences in this book and find acceptance of their family roles and experiences.

Now that I actually know what caregiving is, I realize I was born into this caregiving role. Everyone has family roles and mine happens to be the one where I take care of people. Maybe it’s the control freak in me but I enthusiastically accept this role although, I admit, it was not always something I wanted to do. As a teenager, keeping a watchful eye on Mom so she didn’t sink further into depression (and attempt suicide again) was not something I would have volunteered to do or wish on anyone else for that matter. Yet it was one of many experiences that I accepted, managed to get through and which I actually appreciate for making me the person I am today.

“Appreciate” may seem an odd word choice but I wouldn’t want to be anyone else and those experiences helped shape who I am. For me, appreciating these family experiences (and family itself) is the perfect word.

That complete acceptance of my experiences made me a better caregiver to Mom when she was terminally ill twelve years ago and helps me be the best caregiver I can be to Robert today. Don’t misunderstand – caregiving is not easy and it certainly isn’t always (or even mostly) roses and butterflies and lollipops but taking care of family is what fulfills me and I wouldn’t have it any other way.  Call me crazy!

Please recommend this book to anyone who finds themselves in a caregiving role or who has struggled with accepting some of the mess that comes with being a part of a family.  I'd love it if you listened tomorrow too!

Caregiving Training Wheels

Now that I am a caregiver for my youngest brother, Robert, I have realized my role in the family throughout my life has been that of caregiver. Providing care for Mom when I was a teenager and she was suffering horrible, debilitating, suicide-attempting depression and then again twelve years ago when she was terminally ill with liver cancer, were really just the training wheels of caregiving for me.

My first book Forever a Caregiver covers the “training wheel” experiences, the struggle to accept my family role as caregiver and finally appreciation of my family and acceptance of my role. Caring for Robert, working to help other caregivers and writing about these experiences could not have come about if I hadn’t fully accepted and appreciated my family and my caregiving role.

I wanted to give you a glimpse into Forever a Caregiver and have included an excerpt below. (If you are interested in purchasing you can do so either through Lulu or by sending me an email and I can ship to you with a personal message):

“More than a week passes after Mom’s birthday celebration when I finally call to check on her. It’s odd that Mom didn’t call me yet and it is so easy for me to let time slip with all the activities the kids are involved with, working, trying to find time with Richard – ah, life gets so busy. I usually check in with Mom more often than once a week so am feeling guilty about not calling sooner. Guilt is as much a part of me as my blue eyes and freckles, permeating everything in my life. Wins, losses, relationships, disappointments and successes. All are seen through a shroud of guilt. I love to win but feel guilty someone else lost. If I lose, I feel guilty I didn’t try hard enough to win. Am I being a good wife to Richard? Are the kids getting enough of my time? Did I do a good enough job with that work project? Guilt, guilt, guilt.

“I have learned to live with guilt by wadding it up into a little ball and pushing it into a tiny, dark corner of my psyche, not letting it get the upper hand when making decisions but when I don’t call Mom at least once a week, I know I will experience guilt. Guilt springs up, dances around wildly and stomps on my stomach.

“I tell myself this is normal.

“After the kids have been fed and have found a movie to entertain them this summer evening and Richard finds something to watch on the Sci-Fi channel, I snuggle into a corner of the couch for my visit with Mom. I ask her how the doctor’s appointment went. She hesitates and is clearly reluctant to tell me anything which is always a very bad sign. I press because I know she is holding something back and will eventually tell me if I ask her enough questions.

“Succumbing to my relentless barrage of questioning, Mom tells me that she actually had a couple of appointments last week. She first saw her doctor who, after she explained her stomach pain, ordered an ultrasound for her gall bladder. She went to the ultrasound appointment and the technician scanned her entire stomach, not just the small area of her stomach they had done before when she had gallstones. Mom said she knew there was a problem by the look on the technician’s face. Mom’s concern was confirmed when the technician called a doctor into the room and the doctor informed Mom that her liver was enlarged and covered with numerous suspicious spots. He immediately ordered a chest x-ray which then showed a mass on her upper right lobe.

“The doctor told Mom he is certain she has cancer.

“I haven’t called her in a week. It’s only been a week! How can this happen in a week?”

Have you had trouble accepting your role in the family? Are you the caregiver in the family or is that role filled by someone else? Have you ever thought your childhood experiences were the training wheels for what you are going through now? I'd love to hear your thoughts.

Forever a Caregiver

Well, it took me ten years but I wrote a book! This is my first book and I could bore you with a gazillion disclaimers (just ask those closest to me), but instead I want to tell you about it and how I came to write it.

Mom was diagnosed with cancer in July twelve years ago and within two months had died. I think I remember every moment of that two month period of my life. I helped care for Mom during this time but it wasn’t the first time she leaned on me. She had debilitating depression when I was a teenager and I was her support then, too. There were a few times of also caring for Dad but, in my family, loyalty to both parents at the same time was not an option. As the oldest girl with two younger brothers, caring for Mom and Dad was up to me. (There are many men who are caregivers but, in my experience, if there is a girl in the family – the caregiving role goes to her.)

After Mom died, I felt the need to write about our experiences. I wanted people to know that families can be messed up and dysfunctional but it’s your family. Don't worry, this is not a book about forgiveness – there is no need for it. It’s a story about coming to appreciate my family crazy as it was (and by crazy, I mean periods of actual crazy) and also accepting my role in the family (as the caregiver).

For years, this book was bursting out of me and I wrote it the best I could. I changed the title several dozen times (I have pages of potential titles to prove it) but nothing seemed to fit.

Until I started caring for Robert.

Then it hit me – I was caregiving for Mom all those years although I didn’t even realize it at the time. I accept that as my role in the family. In fact, I have found profound fulfillment from that caregiving role so wouldn’t change a thing.

I am Forever a Caregiver.

This is my first book so forgive me if it’s not the greatest book you’ve ever read (did you think I wouldn’t slip in at least one disclaimer?). One of my favorite quotes (and I’m terrible about remembering who said it) but it is something like “I may not be able to write a book as well as Shakespeare, but I can write a book by me.”

I’d love for you to purchase my book, Forever a Caregiver (you can find it here or on the sidebar), and would love for you to tell me what you think. Have you had to forgive your family or do you accept them for who they are? Do you struggle with your family roles? I’d love to hear about your own family experiences.

Thank you so much for indulging me in this bit of shameless self-promotion.