life coach for women, midlife, empty nest, coach, next act, coaching for women
31
Aug
2016

Creating a Community for Caregivers: Carole’s Story

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Screen Shot 2016-08-31 at 1.35.40 PMCaring for her mother in her final years helped Carole find her mission later in life. She is helping others in the Sandwich Generation cope with the challenges of caring for their loved ones, while celebrating the privilege of being a Caregiver to her elderly parents.

 

Tell us a little about your background…

I grew up in Pittsburgh, Pennsylvania, and still live in the same neighborhood. I was raised by wonderful, loving parents and am the third of four kids. I have fond memories from my childhood. My parents created a warm and loving home and exposed us to the arts and cultural district early on.

My mom was a creative genius: a great seamstress, knitter, crocheter, designer; a creative cook and baker; a writer and lyricist, writing jingles back in the day. She also became a prolific painter in her 60s. She enjoyed using collage in her paintings and her designs were always unique. She loved to dance and was always taking educational classes. She was full of life and love and was a dedicated homemaker, wife, and mother.

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At 10, in one of the many outfits my mom made for me

My dad was an engineer and worked at Westinghouse until he got his law degree while we were in grade school. He went on to have a long, thriving law career, not retiring until the age of 85! He had his own practice and taught us much about reaching for your dreams, following your heart and passion, and never giving up. Both my folks set stellar examples of what a fine human being is. They were married for 65 years and showed us what a good marriage is too.

I went to Ivy School of Professional Art after high school and graduated a two-year program in Fine Arts with a focus on fabric art, including batik. I have a varied work history. I was in the restaurant business for ten years in a variety of capacities. I owned a soda pop vending machine company for eight years. I worked in customer service. I also owned a custom frame shop/art gallery with my sister, Jan Steinle, for five years.

Our shop and gallery was a beautiful, creative place to work in daily. We became a leader in the frame industry, in large part thanks to our efforts to market our business online via elaborate e-newsletters. The industry was behind the times digitally and we understood the power of the net to generate business. As a result of my e-newsletters, I was hired by a leading editorial in the art and framing business to write a five-page, feature article on e-Marketing. It was an exciting offer. That was a defining moment in my life. I had a strong love for writing that I didn’t know about until I hit my 40s.

I was married at 23. I have four children: a daughter Katie (33) and three sons Thomas (29), James (28), and Steven (26). We’re a close-knit family and we all live in Pittsburgh except for Thomas, who lives in Boston. I divorced in 1995 and remain friends my ex.

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In our frame shop, 2005

 

When did you think about making a change?

When the store closed in 2009, I became my mom’s Caregiver for the next several years, while managing a small professional organizing business. My mom died on November 23, 2014 and, since then, I have been my dad’s Caregiver during the workweek.

When I took on the role of Caregiver for my mom, it was because I was unemployed after closing my art gallery; I stepped up as “the daughter.” Jan helped on a part-time basis and was also caring for her mother-in-law. My other siblings worked full time and were unavailable during the workweek. I fully expected to get another job, but this was 2009 and the marketplace was tight. I applied to many companies and had a couple of interviews, but nothing was gelling. I was searching for my calling, but finally understood that my calling was to care for Mom. There were times I was very at peace doing the Caregiver gig and other times I felt a need to move on due to Caregiver burnout and emotional turmoil during the duration of my Caregiver role.

There were moments during my Caregiver journey when I believed that I was right where I was meant to be. Still, I was squirming about what my lifetime calling was because I knew my role with my mother wouldn’t last, for obvious reasons. I didn’t know until late in my journey with Mom that I was a Caregiver; I didn’t know that terminology. Caregiving was not my career path. I didn’t know anything about the industry. I stepped up as the daughter because my parents needed help. They had been my best cheerleaders, always very generous and loving over the years, and it seemed the right thing to do was to come to their aid when they needed me most.

I shared my mom’s last years in the best way, the most loving way I knew possible. I would do it all over again. It was a privilege, in my opinion, to care for her. It was an extremely difficult journey. She was diagnosed with Alzheimer’s disease after my store closed; it was devastating news. We didn’t know about the disease, but we certainly knew it was not good news. My dad was still working full time and needed help. Her diagnosis came almost a year later after we were suspicious of her peculiar behavior and oddball memory loss.

My parents, 25 years ago

My parents, 25 years ago

During the time I cared for my mother, I felt withdrawn, isolated, and overwhelmed by sorrow and loss long before my mother died. It was an excruciating process. I am typically a social person, but my world was rocked hard, and my personality deeply affected. There are no words to describe how deep down inside this impacted my life, still to this day. What I witnessed in my mom’s personality changes was intense and extremely sad. I felt the overwhelming sorrow of anticipatory grief. I had a broken heart. My best friend was dying and I was losing her long before she died. My learning curve was huge. The role changes that took place were monumental.

A purpose-driven life is a powerful thing. It’s all encompassing when you can wake up and know you have a voice in your destiny. Pursuing my life’s path has been a rocky road. How could it not be? I was caring for my mom when she needed me most and reevaluating my own life and career path. I can’t think of anything more important that I could have done at the time. She loved me and our journey early on was meaningful when she knew changes were coming her way. It was a tender time.

I’m so grateful I have discovered my purpose-driven life. I took three different seminars with John Stanko (Purpose Quest) in a classroom setting in 2014, with the aim to understand my purpose in life, and each one helped me greatly. I was hungry and longing for answers and I knew it required work to pinpoint what I was meant to do. There were workbooks and class participation to help me to discover my calling. I knew I needed to find a way to help Caregivers connect and find comfort in their shared journeys.

All I could think about was that there must be thousands, if not millions, of people who were going through something like I was. I longed to rise above the pain and make friends with others who, like me, were giving their best, giving their life, to save a life. Caregivers all around the world are my heroes!

 

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What is your next act

I have a created a community for the Sandwich Generation and for Caregivers, SanGenWoman: The Heart of the Sandwich Generation (formerly known as The Sandwich Woman).

The statistics regarding Caregivers are truly mind-boggling, with an estimated 43.5 million adult family caregivers caring for someone aged 50 or older, in the US alone. Read more here. We learn at a very young age how to love and nurture others; we are groomed from the time we are toddlers to show love and taught to care for others. Caregiving is not a new concept. In this modern day society, support groups are popping up everywhere for Caregivers, due to the mammoth numbers of people who need help to get through their day due to aging, illness, or special needs. Caregivers and Carers (our European sisters and brothers who provide care for their loved ones) are a global, diverse population growing by leaps and bounds as medicine prolongs our life to a ripe old age.

I launched my Facebook community page, San-Gen-Woman: the Heart of the Sandwich Generation, in February 2015; we are now a community approaching 4,000 and are represented by 45 countries. The need for Caregiver support truly is global. I added Twitter and Instagram in May 2015. I publish a blog every other Wednesday too. My sister Jan and I have an online retail store we launched in August 2015, TangledArtBoutique.com, that houses Zentangle® Inspired Art (ZIA) we create ourselves. You don’t have to be an artist to make a Zentangle; the beautiful images are created by drawing structured patterns. The Zen, or meditative aspect of the art form, is the best part. I’m in a peaceful place when I create my Zentangle Inspired Art.

We also house a special gallery of designs to affirm and support Caregivers that includes several gift lines including tote bags, cell phone cases, and greeting cards. It’s a fun store to shop in with all the customization features. I don’t know of a Caregiver gift line like ours; the designs are quite unique. There are 140+ designs to choose from.

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My first book, The Artistry of Caregiving: Letters to Inspire Your Caregiver Journey, is now on Amazon in Kindle and paperback. A unique format, this is truly a book of inspiration, art, and 33 letters — affirmations and imagery to express my deepest love and gratitude to those who are living the life, traveling down the slippery slope of caring for someone who relies on them wholly. My book does not focus on any particular illness. It is meant to help others, of all ages, who are navigating the emotional journey of Caregiving. The Artistry of Caregiving: where words soothe and ideas & art delight. If you don’t have the time or focus to read, you can look at all the dynamic Zentangles in the book to feel affirmed and supported. It’s a book that can be referred to over a lifetime.

Out of something so dark as witnessing my mom’s very serious, extreme memory loss and death, came something beautiful and supportive to the Sandwich Generation – SanGenWoman: the Heart of the Sandwich Generation social media platform. This is my passion, my calling, my mission. My grief could have taken me down, but in fact, it’s my inspiration.

My goal is all encompassing. I want to impart peace, healing, recovery, education, and inspiration, as well as offer gift lines, to those who supply and support the Caregiving industry.

Fruit of the Spirit wth Border1

 

Tell us more about the challenges you see in midlife and in the field of Caregiving.

There is a lack of praise, value, appreciation, support systems, and financial reward for a Caregiver. We are in a major crisis with more of us living longer and the rise of chronic illness and dementia unlike ever before. The projections are staggering for millions of people, worldwide, who will be affected by Alzheimer’s/dementia. We need more funds for research to stop this life-stealing disease.

Our healthcare system is not easy to navigate. It costs a huge amount of money to save a life if you need aides or need to hire people to care for your loved one. Many family members are taking on the role of caring for another and trying to juggle their personal and professional life too, while keeping their sanity. It’s no small feat to be able to do everything and do it well. Caring for someone else is a big responsibility and a huge job that requires energy, stamina, a strong voice of reason, and patience.

Aside from support groups, we need trained professional counselors who can advise us in all areas of life, dealing with the stress and pressure to meet all of the demands. We need someone to talk to who can advise us, put things in perspective, and help us to nurture ourselves and make ourselves a top priority so we remain healthy, able and strong.

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With my dad, one of my very best friends

 

How did you get started creating your community?

I had never written a blog, didn’t know the first thing about it, but I jumped in with both feet. I didn’t worry about having my ducks in a row because my desire and passion to help others superseded my grief and lack of knowledge. All I could think about was helping others because my Caregiver journey was so isolating and emotionally tumultuous.

When I launched my Facebook page and blog, I sent out a questionnaire to 150 women in midlife, asking them to respond to 33 questions about how they dealt with being the in The Sandwich Generation. The questions were very personal and somewhat invasive, but I made it clear they could reply anonymously and answer as many or as few questions as they wanted. The responses I received were interesting to read: how everyone was dealing with being part of The Sandwich Generation. I heard many common themes, for example, financial concerns: how these women would maintain jobs and income while caring for both children and elders, as well as how they’d plan for their own long term care.

My Twitter community now has 1,000+ followers and my Instagram account 700+ followers, with a strong momentum. Each of my social media platforms has generated important contacts for me in my industry and has opened many doors for me. I have made personal friends and business associates with my audience, including people in other countries such as Indonesia, Switzerland, and Europe. These connections make my heart beat a little swifter, enjoying every moment. I love it.

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How supportive are your family and friends?

My dad and sister Jan have been a big support system for me, along with my children and close circle of friends. My dad is the editor for my blog; he’s a wonderful teacher and I have learned a lot in my writing journey with him. My parents have always been my biggest cheerleaders over the years.

 

What challenges are you encountering?

It has been a challenge to find a nice, sweet way to blog about what I have learned without it being a total bummer or upsetting someone. I’m discovering all the time what it is that I truly want to do with the knowledge gained from my experience caring for my parents. Some of my posts were tear jerkers to write, but mostly it’s been a positive experience and certainly has helped me adjust to the new normal.

Life is good and I’m in a peaceful place. I’m happy to be able to profess that. With great love comes great loss. I am full of gratitude to have been raised by my parents. Good memories throughout my whole life. What more can one ask for?

 

My kids

My kids

 

What are you learning about yourself through this process?

I have what it takes to overcome my emotions and think with my voice of reason. If I set my mind to it, I can accomplish many things I never dreamed of. I have something to offer to others – hope, comfort, affirmation, support and love. And, lastly, I have what it takes to create a book and have it come to fruition! That was a very large undertaking, but written with love for my readers.

 

What advice do you have for women seeking reinvention in midlife?

Take some classes to find your passion. What makes you happy and excited? What brings you joy? If you’re unsure, I’d suggest reading about finding your purpose in life via books and on the Internet, finding programs to take, getting support from your place of worship, and surrounding yourself with people you admire and respect in life and in business.

I am always making lists for a variety of things. I suggest writing a list of what is a positive in your life. That is a good starting place. It wasn’t long ago someone said the same thing to me. It sounded so cliché. When you’re reflecting on what matters most, it can open many doors in unexpected ways. I am currently seeing this in my life. All the connections I’m making now via social media are a direct result of that lifestyle.

Don’t wait to have it all figured out before you take the leap. I didn’t know how to create a blog, Twitter, Instagram, or an online store. I didn’t have all my ducks in a row. I didn’t take classes on social media or how to craft a message on any of these platforms—I jumped in with both feet and didn’t care about anything except getting my voice heard. I didn’t get bogged down in the “how to” and just figured it out as I went. I had a calling and my calling was to write a book and to help others who are doing what I did. Emotional support is so important to everyone in general, and certainly in a crisis situation when a loved one is suffering, for the person dispensing care. I cannot overstate this point. Emotional support is a must so that the person who is caring for another can do a job well done.

I heard something recently from a senior woman on the radio talking about her lifetime of success and she said when you have a passion about something it borderlines “obsession”… I can attest to that. Most days I eat, sleep, breathe SanGenWoman. It’s not something I work at – It just IS.

With my sister Jan

With my sister Jan

 

What advice do you have for those interested in sharing their own journeys to help others?

Decide whether your journey is something you want to continue talking about in your life. I do have some limitations about what I’m willing to share and how much I’m willing to talk about my mom and her illness. It was a very personal time in my life—not a fun one to talk about either.

There are a lot of really good people all over the world who are making large strides for senior care, health care, special needs, medical research, writing, and blogging about Caregivers and midlife.

The Sandwich Generation is full of responsibility in all areas of life, and there is plenty of room for anyone who would like to focus on this subject. If you’re driven to share your story, find the means to do so. If you don’t want to write about it, how will you manifest it? Only you will learn the answer to that, if you don’t know already, through your passion and pursuing of your purpose and dreams.

My purpose driven life didn’t come easy. It’s been an oh so long journey of trials and tribulations. We are created to solve problems and find resolutions to situations that arise. To manage a life well lived is a goal I aspire to, daily.

abeam

 

What resources do you recommend?

I think it is vital and critical to anyone who is in the role of Caregiver to ask for help, anywhere you can get it. Agencies, nonprofits, and community colleges are a huge resource to support Caregivers. I never even thought to go there during my years of caring for Mom. I had too many pressing, daily duties to even think about reading anything.

Looking back, I’m sorry I didn’t connect online early on because that can potentially be a saving grace to find a community that understands your pain and role in the caring of someone else’s life. One site I did find and recommend is The Caregiver Space. It’s a great resource and inspired me to forge ahead in developing my own platform. I also recommend the National Alliance for Caregiving for up-to-date information on the subject.

According to my grief counselor, Barbara Coyne, grief is a gift. She is wise about processing grief and embracing it as a gift. I went to one of her support group meetings and it changed my life. I learned how to live with loss and grief from Barbara. She is one of the most peaceful persons I’ve ever met.

Pastor John Stanko, is my advisor, mentor, counselor, spiritual leader, good friend, and the editor of my book. He published the first edition of the Kindle version of my book. Dr John’s mission is living a purposeful life and teaching others how to do that. Purpose Quest is his calling. Read his information and the free assessment survey. It’s one of the most unique and life changing courses out there that I’ve come across and taken. A combination of heart, soul, mission, and spiritual calling to formulate what is going to define the meaning of my experience as a Caregiver.

Finally, for those interested in selling your art as part of your mission, I recommend our boutique supplier, Fine Art America.

 acarerocks

 

What’s next for you? Do you think you have another next act in your future?

I haven’t had much time to think about this because publishing my book was all consuming for the last couple years. I also care for my dad during the week and write a blog and spend time on social media and that is all very time consuming. I’d like to spend more time creating my art. That brings me so much peace and satisfaction. My creative juices are at an all time high and I’m always in the mode of what’s next to post or write about. As for another next act, I am not really looking at the future in that way. I’d like to keep writing and see what doors open now that I have published my book.

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With my kids, in the photo booth at my niece’s wedding

 

Contact Carole Brecht at cbrecht4@gmail.com

The Artistry of Caregiving: Letters to Inspire Your Caregiver Journey

Website

Blog

Tangled Art Boutique online store

Facebook Community

Twitter: @SanGenWoman


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22 Responses

    1. I don’t consider myself a volunteer. I consider this as my purpose and mission (one of my missions) to support those caring for their loved ones, ’round the world, letting them know they’re understood and not alone. This is my work life – and it will continue to be. Please pick up my book – inspiration abounds via the Letters and my Zentangle art and buy an extra copy for a friend/Caregiver. A book of support that is your daily companion – letting you know you’re understood and not alone. I think you will be pleasantly surprised how affirming my book is and it’s also a visual journey. Thank you in advance for your consideration.

    1. Thank you much. It’s not a sacrifice to me to care for my parents – it was a labor of love. From that experience, it has become one of my life’s missions to support, affirm and connect other people caring for their loved ones around the world. Happy to do so.

    1. I hope you consider buying my book and pass it around to all the Caregivers you know. ‘It’s your daily companion, letting you know you’re understood and not alone. If you’re too tired to read, you can look at all the Caregiver Zentangle art throughout the book to affirm all that you are doing. The letters are short and easy to read. Meant to be read on the go, in no particular order. You can get a free sample of my book on my book page on Amazon. May my book be a blessing in your life’. <3

    1. Thank you, I’m so glad you were inspired! I’m still amazed I could write a book of inspiration and create all the Caregiver art I have during one of the most tragic and saddest times of my life. I believe that is how deep my love for my parents runs and also a reflection of how they raised me with numerous positive influences. I’m so glad I was able to care for my parents. They are my heroes!

    1. This is true. It also costs a lot of money to hire qualified help. And a bundle of money to live in assisted living. There are no easy answers if someone is low on cash and needs help with daily living, truly can be a major crisis for so many.

  1. Hii!!
    I read your story and I appreciate your spirit.Most of the children nowadays facing a lot of issues to take care of their old age parents.And after reading your post everyone get inspired.
    Thank you so much for great sharing.

  2. Thank you Carole. We have just found ourselves in this position with my 90 year old mother-in-law. My father-in-law died two months ago and we find now our life is on hold as we care for my MIL. Sometimes I feel resentful which isn’t right but at the same time I realise that is a natural feeling as my husband and I look to a future with no more travelling or doing anything without lots of organisation. You are doing a wonderful job in helping other carers to cope with their situation. Thank you.

    1. Hi Sue,

      Thank you for sharing and keeping it real. My sympathies for the loss of your father-in-law. I understand what you are saying because for a long time my life was on hold. I got lost in the journey and had tunnel vision while caring for my Mom who was quite ill for several years. If you have the resources to hire a Carer while you’re away, that may be one way to still get some “me time” in and get a break from the rigors of your Caregiver role. Looking back I would’ve asked for more help and emotional support during those years. Please come follow me on facebook.com/sangenwoman and Instagram and Twitter and plug into this community of caring hearts. My timeline has a broad spectrum and I include a plethora of all kinds of posts and art. There are lots and lots of Caregiver/Carer support groups on all 3 of those platforms. Hang in there. You will settle in to a routine. But, if you find it’s too hard or demanding, then you may have to find another way to care for your MIL. I hope you get my book. You will relate and, I hope, find comfort, support and inspiration as you travel the slippery slope of caring for a loved one. Thank you for your kind words!

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