(NOTE: Joleen began posting entries years after they’d been written–so sometimes POST dates & EVENT dates don’t match.  Start at the beginning of Joleen’s story by choosing the first blog month at the bottom of any page.)

Joleen Firek, Writer/Producer/Director

Joleen Firek Writer/Producer/Director

Frankly Speaking: Alzheimer’s is an unfolding firsthand experience of love, compassion and pain –  through the eyes of a devoted daughter.  This online expose’ from Emmy Award-winning storyteller Joleen Firek features excerpts and experiences from her life and documentary-in-the-making in an attempt to spin her family’s devastating experience with Alzheimer’s into a positive learning opportunity for other grieving families.

Enter this blog to learn, share, and grow.  Get introduced to Frank H. Firek, Sr., a remarkable man who is on an extraordinary journey into the unknown.  He is funny, good-natured, polite and brave.  A noteworthy person to nearly every life he has touched, Frank loves the camaraderie of people in general and reaps immeasurable enjoyment from mentoring and helping others.  This online project and documentary gives him the opportunity to always be a mentor to others in need – whether he’s here or not.

Joleen & Frank Sr. at her wedding (Nov 2005)

Joleen and Frank Sr. at Joleen’s wedding (Nov 2005)

As this project continually proves, the helplessness of being afflicted with and affected by Alzheimer’s is some days more than a heart can bear… and yet on other days, hidden treasures are discovered beneath the rubble.

Experience Frankly Speaking: Alzheimer’s and learn that, even amidst a family tragedy, it IS possible to connect stronger, rebuild deeper and live with yourself knowing that you’ve given everything you can.

 VIDEO: Joleen explains the initial idea to her Dad (Frank) of making a movie about him and their family’s ongoing experience with Alzheimer’s.

———————————————————————-

A developing multimedia business…

helping nearly 15 million unpaid caregivers

An update from the desk of

Joleen Firek 

I want to thank everyone who has supported me in my caregiving and documentary-making efforts over the past 4 years. What a wild ride it’s been—but so many good things have emerged from the experience!

First off, my documentary movie about Alzheimer’s has evolved into an entire business of services designed to support unpaid caregivers.  Like many of you, I know the challenges firsthand and, as an Alzheimer’s Survivor, I feel pulled to lend a hand to others in need.  I am excited about this opportunity!  Here is an overview of my upcoming caregiver resources:

     The Website: 

               Multimedia caregiver resources & behind-the-scenes film production blog

     The Documentary: 

               Independent feature film to be made from 300+ hours of existing footage

     The Book: 

               Personal experiential journey through blog entries, photos and essays

     The Lecture: 

               Comprehensive caregiver support video lecture series

     The Bear: 

               Sparky is a symbol of hope, love and courage.  This stuffed teddy bear just wants to hug the world!

I have begun to assemble an amazing team of professionals.  Over the next few months, we will be meeting with potential business allies in the areas of finance, web development, online content publishing, and online community outreach.  If you have interest in this project, please let me know! 

Sincerely,

Joleen Firek

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23 Responses to “About”

  1. Erin Henige said

    Hi Joleen,

    Your cousin, Katie, is one of my oldest and dearest friends. She has shared with me the news of your father’s diagnosis and some of the struggles your family is going through. I just read all of your postings and I think what you’re doing is am amazing tribute to your dad and so beautifully written and heartfelt. I have met your dad a few times briefly at family parties and you can feel the love and caring he has for others just coming out of him. Katie has mentioned several times in the past what a wonderful relationship your mom and dad have and how they can never be in the same room without touching each other. What a beautiful testament to their love and how they inspire others to search for, have, and strive to keep love that wonderful. Joleen, your strength and support of your family is evident in the events you tell us on this site. Keep it up and take care of your self too! My heart goes out to you, your dad, your mom, and your family. Erin

    • Thanks for re-inspiring me, Erin! Choosing to post my deepest personal emotions was a big decision and I’m thrilled to hear that you walked away touched after reading my posts – and you’re not even afflicted with Alzheimer’s in your life. I truly hope that my shared experience will help others in need. Thanks for your encouragement and support. xo ~Joleen

  2. Brian Zarek said

    Hi Joleen,
    I just wanted to say “Thank You” for sharing with me as you did regarding the state of your life. You’ve been through a lot so far. It takes courage and strength to face this disease and have the ability to put a face on it. I have much admiration for who you are and what you are doing.

    Blessings!

    Brian Zarek

  3. Jill said

    Hi Joleen,

    I just wanted to tell you how proud I am of you! The project is amazing-a true tribute to your Dad and your family! Please stay strong and kiss your mom & dad for me. I love you all & wish I could be there for you. Please know that you are always in my thoughts and prayers:)

    Love ya Firek!

    Jill

  4. Denise Schuler said

    This is beautiful. I love you.

  5. Jason Coombs said

    Hi Joleen,

    A copy of the book came to my parents today(Walt & Phyllis) Great to read the stories. Im glad that you are focusing energy to such a good cause. Your parents were out to visit here in Maine a while back and Uncle Franks humor was true to form. Even though he new things were changing, he showed what makes him a great man. Duncan(my son loved his magic. I hope to make it out soon to visit. Please keep up the great work and keep your head up as I know you will. It runs in the family.
    Give your mom and dad a big hug for me.

    Jason Coombs

    • Jason, it’d be great to meet you! How thoughtful of you to reach out, especially on New Years Eve! Mom is sitting next to me at the computer and your message meant a lot to her as well. She is touched that Duncan loved Dad’s magic! xoxo ~Joleen

  6. Steve Sundberg said

    Joleen,

    I’m so impressed by your project and wish you and your family the best with the upcomming challenges. I really hope your documentary wins some major awards and am sure it will make a big difference in the world.

    It was great meeting you and your mom in Church yesterday, and I’ll keep you and you dad in my prayers.

    Steve Sundberg

    • Steve, thank for introducing yourself and letting me know you’re friends of my brother Frank! It always amazing me at how many NICE PEOPLE my family knows! 🙂

      I hope you learned something about the disease from visiting my site. I know you were familiar with the players in my story but not the disease itself. Part of my goal is to get others to understand WHAT this disease entails. You mentioned that you were disappointed that Ronald Reagan disappeared from view once he had the disease vs. using his experience to educate others about the disease. THIS – undoing the stigma behind it – is what my father and I have signed on to accomplish! However, I’ll tell you, it’s a very brave and gutsy thing to do because most families have a VERY passionate sense to preserve their failing loved one in a respectful and dignified manner, and by opening it up publicly you lose that control. Had Reagan had cameras following him around as he verbally stumbled and cried from confustion/frustration, I’m sure Ronald Reagan jokes would have ended up on David Letterman and SNL – which is when it becomes undignified and completely out of your control. Much like when family survivors decide to present a closed casket in order to preserve the unscarred memory of their loved one’s visual appearance, family members of Alzheimer’s patients are constantly trying to shade and protect their loved ones as they move from one debilitating phase to the next. My project will uncover these stages in a dignified effort to educate the world on what is quickly becoming an epidemic of horrifying proportions.

      Thanks again for your support, encouragement and for taking the time to educate yourself on this topic which has not yet affected your life directly.

  7. Debra said

    Hello Joleen – We met at the PBS taping of Living Through Personal Crisis. You were certainly at the right place with what you’re going through with your father’s Alzheimers. In reviewing what you’re doing here I believe it’s absolutely awesome. A wonderful & positive way to channel your love of your father & make some good out of this very difficult time. I’ll pray for your continued courage & inspiration & the best for you all.
    Sincerely, Debra

    • Debra, thanks for taking the time to introduce yourself and speak with me at DPTV-WTVS. That was a very good presentation and event! I’ve already started reading the speaker’s book (“Living Through Personal Crisis” by Dr. Ann Kaiser Stearns) and have found many applications for her knowledge on how to handle crisis. I had asked her in regard to my dad having Alzheimer’s, “How do you move on when the person is still here?” Her helpful reply was, “You live your life in tribute to him.” I have thought about that phrase every day since. Take care and keep in touch if you can!

  8. Michele said

    Joleen – you are such an inspiration. It takes a strong and courageous person to take on this project. I know it’s going to help others…and your dad is already a hero in my book. He was very brave in this clip, and from what it sounds like, he was such a giving person.

    God bless you
    Michele

  9. Dick and Margo Simonian said

    Joleen:
    Dick and I knew your dad and Fran through Meadowbrook C.C. They both would light up the room when they came in. He bravely fought an unthinkable battle and we were sorry to hear of his passing..

    He warmed the hearts of many…more than he knew.

    Our deepest sympathies to you and your family.

    Margo & Dick S.

  10. Adina said

    Hello Joleen–While you don’t know me, I work at the same school as your cousin Karrie–I’m the social worker there. Upon hearing that her uncle frank had passed away, I recalled her previously posting a blog someone had written about him. Last night I sat down to see what the blog was all about and literally hours and hours later, with tears down my face, I read all of your beautiful words about your father……what a tremendous tribute to his life! I have not stopped thinking about him all day long and about the incredible courage and strength it took to capture these past few years in writing, stories and priceless videos. I am forever touched by your dad’s story and will most certainly pass it on.
    Warmly, Adina Kanner

    • Adina ~

      Thank you for sharing with me how much you were moved and impacted by my story!!! Random comments from people who don’t even know us totally inspire me and keep me going! THANK YOU for letting me know the value of what I’m doing.

      ~J

  11. Dear Joleen,

    Although I did not have the pleasure of meeting you personally at the funeral, I am a childhood friend of your Uncle Al. We grew up in Normandy Hills, and along with Al, my other siblings were friends of your parents and your Uncle Hank.

    I would like to ask your permission to include your website and project on the Links page of my website. The beauty of your documentary and the love and hope that you share will be a healing balm to many as they face the unknown. Your documentary will be a guiding light along an unsure path. I am an Energy Healer and the work that I do helps to relieve suffering, and the love that you, your family and your precious Dad shared will be a blessing to many.

    I will await your reply. May you always feel the blessing of your Dad’s love in your heart and in your life.

    with gratitude,
    Elaine (Hughes) Grohman

    • Elaine ~

      Yes, PLEASE share my story and link with as many as you can! My whole purpose is to help others understand and/or cope with an Alz diagnosis and the accompanying challenges and terrible heartbreak. I also want people to see how strong families can be when they truly share love unconditionally. Please stay in touch!!! I am currently poolside in Vegas for some much needed rest, relaxation and fun… 😉

      ~J

  12. What a wonderful little clip of you and your father. I left you a note on the other blog about the run for Alzheimer’s and you turning a new leaf. I invite you, and others, to visit me at http://www.remembering4you.com as I too continue to be a family caregiver for my husband. BTW, my husband retired from the USAF as well, just like your dad. Good luck to you. We need to keep in touch, support one another, and offer help to as many as we can because this is a world-wide problem at the moment.

    Ethelle in Maine

  13. Jama Gates said

    My dad just entered Botsford Hospital yesterday and I am very nervous about his care there. He just went into Sunrise assisted living last friday. I am his daughter and my step-mom has been his caregiver at their home but she could no longer do it alone.
    Anyway he was transported to Botsford to be evaluated.He has been aggressive to the Sunrise staff. I saw some of joleen’s videos on the web and I am very upset about some of the things that were said about Botsford Hospital care for your dad what can we do as his family while he is in there to make sure he is being taken care of in the proper way. My step-mom will be there all the time if they allow this. I live 3 or 4 hours north of the hospital.

    Can you respond someone with advise.

    Jama

    • Jama ~

      My father instantly became a Ward of the State (against our knowledge and approval) upon his admittance into Botsford Geri Pysch, giving us little power and decision making in his care there. We were even asked NOT to visit him for 5 days straight–because he got agitated when we left! Of course he was agitated, he was stuck in a sterile cold white environment with nothing to do, no music, just sitting there, left to wander, wondering what was going and where he was and where we were, bored and confused and scared… It was the most awful thing I’ve ever witnessed. We called his Botsford psychiatrist regularly and touched base with the nurses daily on the phone to get updates. The amount of meds they were pumping into him was disturbing but, again, we didn’t have much recourse. Unfortunately, the medical community isn’t totally in alignment with other caregiving philosophies. The answer seemed to be to drug him into submission; especially in my father’s case whom was young and strong. It’s just such a shame that this is how we treat our elders who have given so much to society up until this true hour of need.

      If your father is dismissed from Sunrise during his hospitalization (as my father was), please call Courtyard Manor of Farmington Hills and talk to the director, Jim Cubr (248-207-0461). He is a wonderful person and Courtyard Manor is a WONDERFUL place! They don’t consider anyone “unruly” and treat everyone at their home with love and dignity. They are heaven sent.

      You may also find this website helpful for finding other homes: http://www.aplaceformom.com/ However, in my opinion, starting with a proven quality place like Courtyard Manor is key when asking for advice or references to other quality homes more nearby you, etc.

      Good luck and please keep me posted and reach out again if you need more advice. I see Ethelle Lord responded to your post as well; call her for some warm advice too. xo

      ~ J

  14. Your father is aggressive to the staff because he does not recognize their voices and the new place. That is perfectly normal and they should have received training to cope with such outbursts. Is it possible for you to stay with him for a month to 75 days with him until he adjusts to his new environment? That’s how long it will take with a family member living with him in Sunrise.

    Your father should not have gone to the hospital alone. Again, someone needs to stay with him 24/7, especially while he is in the hospital to monitor him first and the treatments they want to give to him. Hospitalization is one of the most critical and traumatizing events for someone living with Alzheimer’s.

    They need to allow your step mother to be with him otherwise she can insist to be with him. She is the primary caregiver and has that responsibility and authority.

    Give me a call if you need to talk, please. My number is 207-764-1214. Stay strong, Jama for you dad. He needs all of you to be on his side and protect him.

    Sincerely,
    ~ Ethelle

    Pioneer in Alzheimer’s coaching

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