CareGifters Book Series: Caregiving Love Stories Needed!

It is hard to believe but we are already moving into our second year of the CareGifters Book Series!  With Caregiving.com as the publisher, caregivers and their carees (and others involved in caregiving) as contributors and me (Trish Hughes Kreis) as editor, we published four books in 2012: Help, Comedy, Forgiveness and Gifts. 

Our next collaboration will be Love, due out in time for Valentine’s Day (noting my usual disclaimer: barring any caregiving emergencies).   

Because I know how caregiving can get in the way of the best of intentions, I am flexible with the deadline and the deadline to submit has been extended to January 28. 

The Love book will include your stories, poems, photos or artwork about love and caregiving.  Love has its ups and downs, challenges and rewards when caregiving – sometimes we even wonder where the love goes!  This book will explore as many shapes love comes in as possible.  Whatever love means to you or the one you care for will be shared with other caregivers. 

An added benefit of sharing our caregiving stories through these books is seeing we are not alone. 

What we experience, others experience. 

What we share helps us (because it’s good to get it out!) as well as others – in more ways than one: the money we raise through the CareGifters Book Series, goes toward the CareGifters Program which helps caregivers in need. 

Please see below for complete submission guidelines from Caregiving.com:
 

1. Your submission must be 1,500 words or less.

2. Your submission, in the form of an essay, short story, narrative or poem, must be related to the book’s theme of “Love.”

3. Your submission is, in essence, a donation. With your submission, you acknowledge you will not receive reimbursement upon the book’s publication.

4. We may not be able to include all submissions in the book. We will notify you whether or not your story will be included by January 29. Each published submission will feature the author’s by-line, bio and website link (if applicable).

5. To enter a submission, email your story by January 28 to love_story@caregiving.com. Please only attach Word or .txt documents (no PDFs). Include your name and phone number in your email.

I look forward to including your stories in our book! 

Guest Post: Caroline McGraw, Author, I Was a Stranger to Beauty

I am honored to be able to bring you a guest post by author, Caroline McGraw, who recently released a Kindle Single through ThinkPiecePublishing called, I was a Stranger to Beauty.   Caroline describes herself as “a would-be ‘childhood paleontologist’ who digs for treasure in people” and, as she says, she “writes about finding meaning in the most challenging relationships” at her blog, A Wish Come Clear.  

Author, Caroline McGraw

Congratulations are due Caroline as her KindleSingle debuted last week at #3 in Special Needs Memoirs and Special Needs EBooks category on Amazon!  Her book price is only $1.99 and 5% of proceeds from the first month's sales go to L'Arche Washington DC, a caregiving organization that provides homes for life for adults with special needs.  (To purchase the book, please visit here).   

Let’s help push Caroline to the #1 spot!

Caroline has shared an excerpt from her book for caregivers, Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive) and Caroline is graciously offering a complimentary copy of the book via email.  Please visit Caroline's blog for caregivers, A Wish Come Clear, for your copy.  

Caroline’s excerpt will also be included in the next Caregiving.com CareGifters book, Love.  (Details on how to submit an essay, poem or artwork to the CareGifters book can be found here).    

Your Creed of Care:  How to Dig for Treasure in People (Without Getting Buried Alive)
Pitfall #7:  Holding On

I’m not a parent, so I can only imagine how difficult it must be:  letting a babysitter watch your kids, letting them go off to school, to college, to the wider world. Add to that a child with a physical or intellectual disability, and the letting-go gets even more difficult. To let go, to trust another person with your child or sibling? It may seem impossible. Yet, it’s also extremely valuable, both for you and the person you love and care for.

I remember riding with my parents the first time we dropped my brother Willie off for a respite weekend. He’d be spending two days with a group in a local hotel, going to game nights and swimming in the pool. I knew that Willie would have a great time. Even so, I felt a rush of protectiveness and near-panic as he exited the car. I kept feeling a need to check on him, to make sure he was all right. I could tell that my mom felt this need even more than I did. Though she’d met the staff and talked to my brother extensively and prepared long lists of Willie’s routines and double-checked his food, clothes and medication supplies, she still felt anxious. She’d done all she could, but it all felt so insignificant as he disappeared from our sight. We all wanted to hold on to him as we drove away.

After that experience, I understand why one woman I know literally left the country after her brother came to L’Arche [a faith-based non-profit organization that creates homes where people with and without intellectual disabilities share life in community, where I served as a caregiver for five years]. She knew that, if she stayed within driving distance, she’d be sure to meddle with his care. As my mother did for my brother, this woman made extensive preparations to ensure that her brother would be well cared-for. However, when the moment to let go of her brother’s care came, she felt a strong temptation to hold on.

I’ve met other families who have held on to their children tightly over the years. They continue to treat their adult sons and daughters as children. These parents are holding on to their role as primary caregivers, even as their sons and daughters are trying to make a new home and new life for themselves. It’s always difficult to watch this dynamic, and even more challenging to be a care provider in the middle of it. The adult child in this situation has a choice: they can either rebel against their parents’ holding on, or comply with it...and feel guilty for feeling stifled. Most people choose the latter.

To parents, it can seem as though holding on in this way will keep their child safe. When I watched my brother walk into the hotel, I wanted nothing more than a promise that he would be all right. I wanted a guarantee, even though I know better. There are no guarantees. We can only know that, by holding on too tightly to those we love, we are not loving them as we should. As Martha Beck writes in Steering By Starlight: “The goal of real love is always to set the beloved free.”

We cannot wait for a time when we feel perfectly safe to open our hands.

I cannot thank Caroline enough for sharing her excerpt here.  I’d also like to share an overview Caroline writes of her new book, I was a Stranger to Beauty:

How can you keep loving someone who seems to be destroying your family? And how can you separate a beloved person from their terrible actions? I Was a Stranger to Beauty invites readers to walk the road of loving people as they are ... a narrow, challenging road that leads to vistas of unimagined splendor.

Writer Caroline McGraw shares her arduous (yet joyous) journey toward acceptance of her only sibling, Willie. Willie, a young man on the autism spectrum, struggles with self-injurious and aggressive behavior. Caroline and her parents do their best to offer help and support, but Willie’s behavioral challenges continue. In the face of this seemingly-insurmountable difficulty, can they find a way to carry on as a family?

I Was a Stranger to Beauty follows Caroline as she makes an unexpected transition:  from angry sibling of a young man with autism to full-time caregiver for adults with special needs. After graduating from top-ranked Vassar College, Caroline takes a detour from her plan to write professionally in order to become a live-in direct care worker at a L’Arche home. L’Arche, a faith-based non-profit wherein people with and without intellectual disabilities share life together, is Caroline’s training ground for forgiveness.

As she forges new relationships at L’Arche, Caroline  finds herself  at  the  threshold  of  a  new  space  –  a  space  of  simplicity,  small  wonders,  and  overarching peace. In her work as a caregiver, Caroline falls in love with people with special needs, and begins to see the kind of things that only they could show her … namely, how to love, and not fear, her brother.

Beautiful. 

Thank you, Caroline.

The Faces of Caregiving: Kathy - Lewy Body Dementia

Caregivers are everywhere. Caregivers are people who might be in line with you at the grocery store, next to you at the doctor’s office or sitting a few pews behind you in church.

They might be that person in the slow lane you’re cursing because they seem distracted (sorry).

When buying protective briefs for Robert, the cashier at CVS told me his dad was a caregiver for his grandfather. He then shared a tip about what brand worked best for them (Tena was their favorite).

That’s one of the many things I love about caregivers – the willingness to help and share information with others.

While caring for Robert and reaching out to other caregivers, I’ve met some amazing people. Each story is different but there is a recurring theme: advocacy. Aside from caring for a loved one, these people have taken the time to help others.

In this series on family caregivers, I’d like you to meet a few of those individuals who not only are caring for a family member but who are also vocal advocates.

Today, we meet Kathy who cares for her husband who was diagnosed with Lewy Body Dementia in 2007. Kathy blogs on Caregiving.com and on her website, Living with a Thief Named Lewy Body Dementia. Her website was recently chosen by Healthline as one of the 25 Best Alzheimer’s Blogs of 2012. Congratulations, Kathy!

Kathy answered a few questions for us about her caregiving experience and her advocacy work. Please contact Kathy through her website if you have questions about her experience or about Lewy Body dementia.

Robert’s Sister:   Tell us about your caregiving situation.

Kathy:  I'm Kathy a 49 (maybe 50 by now) year old spousal caregiver. My husband, affectionately referred to as Hubby, was diagnosed with Lewy Body dementia in 2007. (Note from Robert’s Sister: Happy Birthday, Kathy!)

Robert’s Sister:  Tell us a little bit about the disease your Hubby is facing.

Kathy:  What is Lewy Body Dementia, you say?  Well I'm glad you asked. It's the second most common form of dementia after Alzheimer’s and the most commonly misdiagnosed because it has symptoms similar to Parkinson’s and symptoms similar to Alzheimer’s yet needs to be treated differently in a lot of ways. Why is it so often misdiagnosed? Another good question! Apparently not too many people have heard about it. Until Hubby's diagnosis I never heard of it and I've been surprised by the number of health care professionals that have never heard of it so I'm always happy to teach them. Here's a link if you would like to learn more about it.

Robert’s Sister:  As a caregiver, what is the biggest obstacle you've had to face?

Kathy:  For me, the biggest obstacle I've faced is balancing Hubby's independence and dignity with his safety. My head and heart still juggle and struggle with the facts that this is still a once independent and proud grown man. My husband, the head of our family. And now he needs 24 hour care and attention due to his confusion and loss of life skills.

Robert’s Sister:  How did you overcome that obstacle?

Kathy:  Hmm, to start with I am a woman of Christian faith so I pray A LOT! I remind myself that Hubby's safety comes first and foremost. I've had to learn to be emotionally forceful in my decisions concerning him. It's taken a lot of prayer to get through some of those difficult decisions. I'm still learning though so I guess I'm less overcoming and more getting through.

Robert’s Sister:  What organizations did you become involved with due to your caregiving situation?

Kathy:  I haven't really gotten highly involved in any organizations like the Lewy Body Dementia Association or the Alzheimer’s Association. As Hubby's 24 hour caregiver it's difficult to leave the home and participate in outside activity. All of my involvement is on line. The biggest thing I'm involved in is caregiver support. I'm involved in an on line spousal support group for Lewy Body. It's my "go to" for "in the trenches" caregiving. The reality is that spousal caregiving is very different than other family or friend caregiving. There are certain intimate struggles we face that many are not comfortable in sharing publicly.

I also found a home on caregiving.com. A place for caregivers of all kinds, spouses, children, partners, friends with various caregiving needs, not just dementia. I've enjoyed the "family" feel there and have made some friends I feel very close to. The support we offer and receive is exceptional and in my own opinion, beyond compare. Like I said, family, all uniquely different, yet all the same in needing and supporting each other. That's how we met.

Robert’s Sister:  What motivated you to be involved and to want to share info or advocate?

Kathy:  I originally stated keeping a journal of living with Lewy Body Dementia. More as a way to chronicle what was happening with Hubby for the doctor but also as a way to "self help" me and my feelings. I had searched for information about Lewy and found little to no information as to what we were dealing with on a daily basis. I was able to find some technical information about it but I wanted to know how to get through the challenges, what did someone else do? So I decided to blog about our lives, the struggles and challenges, the joys and the laughter. What worked, what didn't. Real life stuff. I wanted to share with anyone that was searching for the same thing I was. I wanted to use this experience to reach out to others and let them know they were not alone. After consulting with my (adult) children and getting their feedback, I think it was a great decision.

Robert’s Sister:  What have you done as an advocate or to share information with others?

Kathy:  I started blogging (read above answer), on a small personal blog and larger caregiving.com scale. I also print off and share information about Lewy Body Dementia that I happily and sometimes pushily (can I make that a word today?) share with anyone from home health aides, nurses, doctors, emergency personnel or just about anyone within paper shoving distance. I'm not shy.

I was asked to participate in the CareGifters Book series so I'M IN PRINT! Autographs on request dahling (adjusts big sunglasses) ;-)

I like the fact that all the proceeds of these books go into a caregiving.com fund for caregivers and when a caregiver has a need they can apply for the fund and receive $500 toward that need. I feel like it's my way of helping more caregivers.

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

Kathy:  I like chocolate. Umm I guess that's not what you were asking, was it? (Note from Robert’s Sister: no, but good answer!).

But seriously, yes I would like people to know that once you've met one person with dementia, you have met one person.

Dementia isn't about forgetting or losing just your memories. It isn't as if the memory slipped away to later be retrieved, it's about losing them completely along with your life skills. It's a disease of the brain that slowly removes all traces of anything the person knows. Even though the person with dementia may seem to not be there, they didn't disappear, they are still locked inside the disease. They still deserve respect, to be treated with dignity and acknowledged.

Also know that yes, dementia is very sad and there are a vast many struggles associated with it, but there are also very good days. Try to find something good in the day even if you must seek it. The more you look, the easier it is to find.

Robert’s Sister:  How can people contact you if they want to learn more about Lewy Body Dementia?  

Kathy:  I love people and I'm happy to share what I know (sometimes perhaps too much).

I can use all the prayer warriors, well wishes, finger crossers and pixie dust sprinklers I can get. My personal blog is http://www.thieflewybodydementia.com/ or you can find me on www.caregiving.com. Also, I'm a Facebook junkie and you can see me at https://www.facebook.com/kathygill.lowrey. I also tweet but I am NOT good at it. Somehow I can't get in the groove of it at https://twitter.com/phatkathy.

Hey, Thanks for having me, Trish!! I appreciate the opportunity to share a little about Lewy Body Dementia. I've enjoyed spending time with you and your readers. You have a lovely group of friends here.

Robert’s Sister:  Many thanks to Kathy for her time and willingness to share her experiences! 

Next, we will meet G-J who cares for her husband, Steve who was diagnosed with early onset Mild Cognitive Impairment (MCI).

Finding Forgiveness and a Way to Help

This year I have had the honor to edit the stories of caregivers to create a series of books for Caregiving.com.  The books are a fundraising project for the CareGifters program which sends $500 to a caregiver in need as often as possible.


Many, many caregivers have been helped with a variety of needs and it is extremely rewarding to be a part of this project.

The most recent book is about forgiveness and the stories are from people in varying stages of forgiveness. Beautiful photographs are sprinkled throughout the book amidst these poignant stories. I’m sharing one of my essays on forgiveness here as I have struggled with forgiving my dad for not choosing treatment for his kidney failure. 

If you would like to purchase a copy of the book (the eBook is only $5), please visit here.

You can be confident your purchase of the book will go toward helping another caregiver who doesn’t know where to turn.  The most recent CareGifters recipient was extremely stressed because she had been diagnosed with cancer and needed surgery yet was a full-time caregiver for her husband.  She didn’t know how she could afford to hire care for her husband while she was in the hospital.  This money allowed her to get the help she needed giving her peace of mind before her surgery.

My own stories of forgiveness (Before Forgiveness and Letting Go . . . Finding Forgiveness) are just two of many stories in the book.   

An excerpt from "Before Forgiveness" -

"Unfortunately, his paranoia stretched to include doctors and other health professionals.  When he was very sick he would see a doctor to get pain pills but wouldn't follow their advice about his kidney failure.  He was bluntly told if he didn’t go on dialysis his kidneys would fail and he would die within six months. 

Several years prior to this he had a terrible bout of Bladder Cancer for which he was treated with chemotherapy, radiation and finally, removal of his bladder and prostate.  Dad became convinced the surgery was unnecessary and the doctors only removed his bladder and prostate to remove him from the dating pool so they would have less competition. Right. Because the right to date is squeezed in just before the "do no harm" sentence in the Hippocratic Oath. 

When told of the kidney failure, he refused to see an oncologist to see if his cancer had returned to infiltrate his kidneys.  He had extreme back pain and only wanted pain pills. He refused to connect his back pain to his failing kidneys.

He wouldn't let me attend his doctor's appointments because he knew I'd force him into treatment and he said he didn't want to be mad at me. 

He steadfastly refused dialysis because he didn’t want to live hooked up to a machine.  He told me the only way he would ever allow dialysis was if he was in a coma and going to die that very day.  He told me I could make that decision if it came down to it.  I told him I didn't think that dialysis would work once it got that dire and he should talk to his doctor about it and not put me in such a position."
An excerpt from "Letting Go . . . Finding Forgiveness" -

I have a difficult time with forgiveness but not because I’m an unforgiving person (really, I’m not).

It’s because I believe people do the best they can with what they have – most of the time.  It’s not really up to me to wave a magic wand over a person’s head and say in my most regal voice, “You’re forgiven, good Sir.”

I don’t know that I have any right to forgive someone for something they did that, while hurtful, was unintentionally so (most of the time). 

Another piece to this forgiveness quandary I am in is that it is closely tied to letting go. 

Me, who envisions a future involving several cats and boxes and boxes of the kids’ drawings from pre/elementary/middle/high school as well as a good amount of pictures and books.  

Oh, wait.  That sounds eerily like my present.

Okay, so I may have a letting go problem.  Maybe. 

If I have a letting go problem do I also have a forgiveness problem?

I don’t feel the need to forgive my parents for the decisions they made when I was growing up.  My brothers and I were loved and our parents were trying the best they could.  They were young and went through mental health issues (depressions, bipolar disorder). 

I’ve long since accepted them for who they were.  They didn’t intentionally hurt us kids so there’s nothing to forgive.  Somehow, I can even let go of the difficulties depression brought into our lives, probably because it was something Mom worked to overcome. 

She eventually stopped trying to give up.

Recently, I was listening to Anna Stookey who is a regular on the internet radio show, Your Caregiving Journey with Denise M. Brown.  Anna and Denise were talking about letting go.

A comment sent a jolt through me:  it is perceived as a failure when we let go."

I hope you are able to check out the book.  I'd also love to hear your own stories of forgiveness so please feel free to share them in the comment section. 

We all have stories to tell!

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!