Support the Caregiver: 9 Strategies for Turning the Stress of Alzheimer's Caregiving into Transformational Growth.

By Dr. David Davis and Joko Gilbert

As anyone who has walked in our shoes knows, there is a vast hole in the heart of a caregiver who, by a twist of fate, must tend to the needs of a Loved One suffering from Alzheimer’s. A hole that has the power to reshape and redefine who we are, for the rest of our lives.  So, if we can approach this incredibly difficult challenge with the awareness that caregiving can be an opportunity for healing and growth, it allows us to step back from the precipice, where frustration, sadness and exhaustion await.

My sweet wife Linda, was diagnosed with Early Onset Alzheimer’s in 2009 at the age of 51 years old.  She survived for 7 years until her death last year. We are simply not given the tools and strategies to deal with the burden of caregiving and the toll it takes on every aspect of our lives.  Having practiced chiropractic for a many years, I had a strong grasp on the principles and practices of healthy living, which was the fuel for my desire to come through this experience as a better version of myself, and to embrace the profound lessons as a caregiver, allowing me to more fully integrate  into the world.  

The thought that we can bring insight into the community of caregivers to ease our collective burden, as well as providing inspiration and information to elevate the conversation from one of support to one of empowerment, was the motivation to create our book, Support the Caregiver, 9 Strategies for turning the stress of ALZHEIMER’S CAREGIVING into Transformational Growth.

Joko Gilbert, a dear friend of mine and Linda’s, was extremely close to the whole experience of taking care of my wife during her illness, and taking care of me, I might add, during the worst of it.  It is from our shared experience, that we were determined to give voice to the most valuable lessons gleaned from those eight years, along with the strategies for emotionally prospering at a time when exhaustion and despair taunt us.

Out of our passion to share our insights, we have met with many individuals and groups in the Alzheimer’s community.  Each meeting, each conversation is met with enthusiasm and the desire to explore more deeply the strategies that we have assembled.  As a result, the Alzheimer’s Association has invited us to speak on a number of occasions, to groups small and large, as well as an invitation to be a speaker at the national Caregivers Conference in Connecticut this on April 19th.  

The feedback has been strongly favorable, as we watch a tide of change in the caregiving community towards the very potent idea of empowerment.

Writing this book allows us to articulate and crystalize the most important and valuable lessons caregiving has taught us. It affords us the opportunity to reinvent ourselves in a way that makes our lives richer for having gone through the experience.

Speaking as a caregiver, I can think of nothing else that is as valuable and gratifying than reclaiming our sense of self, and the peace that accompanies it, which are the cornerstones to living a healthy, purposeful and joyful life. 

Dr. David Davis

I am recently retired from chiropractic practice after 34 years. My passion continues to be educating people on the principles of health and healing, writing, reading and travel, because I am always curious about what's around the next corner or beyond the next hill. 

Joko Gilbert

I was born and raised in a tiny village in Austria and traveled the world working as a fashion model. In the 80’s I moved from London to New York City to continue my career. I fell in love and settled down (and gave a lot of guardian angels a much needed break from watching over me), got married and had two delicious suns (not a typo). I’ve also worked in my husband Frank’s chiropractic practice assisting our patients with weight loss, exercise and healthy food and life choices and am a certified Reiki practitioner. Not in a million years could I have imagined that my friend Linda’s diagnoses with Early Onset Alzheimer’s would turn my life towards working with caregivers in the Alzheimer’s community and not in a million years could I be more honored to do so. Caregivers are unsung heroes! 

David@SupporttheCaregiver.com 

Joko@SupporttheCaregiver.com 

Facebook: https://www.facebook.com/SupporttheCaregiver/

Twitter: https://twitter.com/JokoGilbert

Instagram: https://www.instagram.com/supportthecaregiver/

LinkedIn: https://www.linkedin.com/company/11548686

Meet Catherine Hodder, Esq., author of “Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids”

Reposted with permission from AlzAuthors.com

By Catherine Hodder, Esq.

I was a corporate and banking attorney when my father began experiencing mini-strokes and having difficulty with his memory. We didn’t know at the time he was embarking on a ten-year battle with Alzheimer’s disease. And what a battle it was.

Even though I was well versed in law and finance, it wasn’t until I faced my father’s illness that I understood the importance of having proper estate planning documents. The more I learned, the more I realized there is a great deal of information most people (even attorneys) don’t know.

Before my father’s decline, he would mention from time to time about how to handle his affairs when he died. He also made it clear on many occasions that he did not want any artificial means to keep him alive. Knowing full well my mother would not be happy with his decision, I asked him to meet with a lawyer and put his wishes in writing.

As a result, he consulted with a seasoned estate planning attorney who drafted a last will and testament, revocable trust, health care power of attorney, financial power of attorney, and living will.

It is hard enough to care for someone with Alzheimer’s. It would have been impossible if we didn’t already have these documents in place. Because of my father’s planning, the financial, healthcare, and probate matters were handled seamlessly. It allowed us to focus on our father’s care.

Seeing first-hand how proper estate planning helped our family, I wanted to help others in a similar situation. After my father’s death, I changed my focus from finance to estate planning. I wanted to use what I learned from the front lines to benefit others.

I went into private law practice in Florida with a partner, whose father, incidentally, had terminal cancer. We lived the issues that many caregivers face. It was our mission to help caregivers understand how estate planning could help them. We especially reached out to those families in the “Sandwich Generation” who had young children they wanted to protect and who had real concerns about their aging parents.

Due to my husband’s career, we moved to California. I thought about starting another practice, but soon realized what I really wanted to do was educate others about estate planning.

I wrote Estate Planning for the Sandwich Generation: How to Help Your Parents and Protect Your Kids to be a resource for caregivers. There are ten steps for creating your own estate plan and five talks you should have with your parents. It is my mission to guide others through challenges of aging parents and caregiving.

Robert H. Schuller said, “Tough times never last, but tough people do.” It is my hope that this book with help people during those tough times.

 

About the Author

Catherine Hodder, Esq. is an estate planning attorney turned author. She enjoys working with families who would rather be doing anything other than estate planning. Her Florida law practice, featured in the Palm Beach Post, made “house calls” to help families with their estate planning needs. She now resides in California, writing helpful articles for members of the “Sandwich Generation.” She is also co-author of Law Office on a Laptop: How to Set Up Your Own Successful Mobile Law Practice, an #1 Amazon Kindle bestseller in law office education.

Connect with Catherine

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Welcome, Minna Packer, blogger of “Suddenly Mad: My Voyage Through Early Alzheimer’s”

 

Twice I was told the pattern of the images was that of Alzheimer’s. The changes and symptoms of what appears to me to be a rapid form of the disease have been radical. neurologist recommended I retire. I pushed myself to continue through the term, and then resigned from my twenty year teaching career last summer. There was no recognition for my many years of service. People I had known for decades, friends and colleagues disappeared.

Reposted with permission from AlzAuthors.com

By Minna Packer

I was a teacher, professor, artist, filmmaker, mother of two adult children, a wife, a former American Fulbright, and an active member of my community. I am now 63. I was diagnosed twice in 2016 and 2017.

The lawyers told me to get my affairs in order and prepare for the eventuality of ending up in a memory care facility. I was not given any guidelines beyond being told by the neurologist to exercise and play Sudoku and Lumosity.

I thought joining an early stage support group would give me purpose and I would make friends. I attended a Reminiscence support group at the neurologist’s hospital, and met people two and three decades older than me who were in later stages, who bounced a balloon to each other as an activity. I figured there needs to be more to life in early stage than this. After I sent the social worker an email questioning if there were support groups for younger onset, I was told to not return to the group. I met with a woman who heads a fledgling Alzheimer’s organization that offers caregivers support groups in my county, in the hopes that I might start a early stage support group. She told me the only early stage people she knew were not interested in “being out” about having the disease, because of its stigma.

 

Where was I to turn for social support? I researched and found online communities for people with dementia. Alzconnected.org sponsored by the Alzheimer’s Association is an online forum, and the early onset forum became my go to place, to communicate with others in the early stages. I contacted the founder of Dementia Mentors https://www.dementiamentors.org/, who paired me with an online dementia mentor who is 59, and has been diagnosed with early Alzheimer’s and Frontotemporal Dementia, who I meet with once a week over virtual Zoom chats. Dementia Alliance International support groups, an online community of people with dementia from all over the world, who counter the stigma and advocate for inclusion and having our voices heard, have become my online friends https://www.dementiaallianceinternational.org/.

 

I joined Dementia Action Alliance and was recommended for the art workgroup. It’s comprised of both people with dementia and professionals without dementia, who work in the arts https://daanow.org/. Opportunities for discussing stigma and the language we use to describe ourselves have opened up between us. The chair of DAA has become a dear friend who has visited me in my home and regularly Zoom chats with me every week.

Last summer I started a blog on WordPress: Suddenly Mad: My Voyage Through Early Alzheimer’s.

 

The blog has given me the opportunity to tell it like it is for me, the good, bad and ugly. It is the channel for my uncensored self-expression. I upload my artwork and write about my experiences, relationships, and the trials and tribulations of living with a changed and changing brain. Caregivers, people in the dementia community, and old friends and family have written to me with appreciation for my raw honesty and ability to put into words and images my experience of falling down the rabbit hole, that to me, is Alzheimer’s. I write for you and I write for myself to remember. My art captures what cannot always be put into words. Sharing my blog is my way of not withdrawing from the world and demonstrating that I am still a creative person with thoughts, feelings and opinions that have resonance.

 

About the Author

Minna Packer has been an educator, filmmaker, producer/director, fine artist and writer. Born in 1954 in New York City, she is a first generation American, born to Jewish Holocaust survivors from Eastern Europe, who emigrated to the U.S in 1951.

She received her professional education at Pratt Institute (MFA); New York University and The Nova Scotia College of Art and Design University in Halifax, Nova Scotia, Canada (BFA).

 

Her film credits include – Director/writer and producer of the documentary, Back To Gombin https://player.vimeo.com/video/124443430 which is in the permanent collections of the US Holocaust Museum and Yad Vashem – www.backtogombin.com.

Packer was awarded as a distinguished Fulbright Scholar for her work on the film, The Lilliput http://player.vimeo.com/video/91234297, website at www.thelilliputmovie.com.

 

A recipient of The Nancy Malone award for excellence in directing, through New York Woman in Film and Television, she has also been awarded grants for her work from The Trust for Mutual Understanding, The New Jersey State Council on the Arts, The Gombin Jewish Historical and Genealogical Society, and the US State Department .

She has been a distinguished lecturer and professor at New York University, Jersey City State University, The University of Lodz, Poland, the Leon Schiller Film School, Jagiellonian University and Jerusalem University. For twenty years she chaired the art, art history and media department at The Hudson School- an independent school for gifted students in New Jersey.

In 2017 she was diagnosed with Early Onset Alzheimer’s and retired from teaching. She participates in on-line social and educational webinars with Dementia Alliance International, Dementia Mentors and Dementia Action Alliance, and writes a blog, Suddenly Mad: My Voyage Through Early Alzheimer’s www.suddenlymad.com. Since her retirement, she treasures the time spent with her family and baby granddaughter.