The documentary, Sparky: Connection of Courage, is a heartwarming father/daughter love story, which demonstrates the power of love in the face of death.  The movie’s mission is to raise disease awareness and to teach caregivers that they can survive this life-changing experience.  Sometimes you have to reach out for help.  Sometimes you have to look inside.

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Watch the SPARKY movie trailer in preparation for the experience…  

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SPARKY MOVIE TRAILER SUPPLEMENT (June 23, 2011):

The local Detroit NBC affiliate (WDIV-Ch4) did a wonderful story on me about my movie and what I’m trying to accomplish with Frankly Speaking: Alzheimer’s.  This truly encompasses my vision of helping caregivers and creating a paradigm shift in the world in regard to Alzheimer’s and compassion!

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Watch SPARKY – the caregiver who never complains

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33 Responses to “Sparky – the Documentary”

  1. Jerry & Fran Ashe said

    Great Idea. Congratulations and Good Luck the rest of the way. We look forward to seeing more. We will always think of Frank. We will keep Frank’s family in our prayers. Jerry & Fran Ashe

  2. Krystle D said

    That was very beautiful, but sad at the same time. It brought on so many emotions, and memories. My Grandfather didn’t have Alzheimer’s but he had dementia and it acts very much like Alzheimer’s. There were a few times when I went to visit him and he thought I was my mom, I looked a alot like her when she was my age at the time. It was hard as a young girl to learn to understand why Grandpa didn’t know me. I can’t count how many times I left crying my eyes out trying to wrap my young head around the understand that he didn’t know who I was. Before it got that bad there were some times when you were worried but you couldn’t help but laugh. Grandpa was a big gardener and had a great green thumb but when his dementia started up he did some silly things. Mom went out and bought him some of those plants that come in those white hangers, and instead of hanging them or taking them out of the pots to plant them in the ground he planted the hole planter in the ground. I will never forget the day we walked in the back yard and all you saw were this white planter hooks sticking out of the ground in these nice neat rows, it was sad on one hand but you couldn’t help but giggle a little bit it was quite a sight to see. None the less thank you for sharing your story it was beautiful.
    Krystle DeVo

    • Krystle, thanks for sharing so much detail about your life with me. You are right, there is SO much confusion and anger and fear when one is trying to grasp the concept that their loved one no longer comprehends who they are. As a blanket statement, “You loose your memories” doesn’t sound that horrifying or heartbreaking. But when you get into the minutiae of living those days and years and moments of trying to prop up your loved one while reeling yourself in world that no longer makes sense, the impact is multi-dimensional and daunting.

      Regarding humor, my family could have NEVER gotten through Alzheimer’s without it! 🙂 We are a family of humor to begin with, and the absurd things that happen during Alzheimer’s are such fodder for new material and laughing! My dad was often even laughing at himself! Humor is a wonderful coping tool capable of melting away tension. It also helped my family bond during hard times. It sounds like you experienced this as well. I can only imagine turning the corner in the backyard to see all the white hangers!!! LOL God bless him. 🙂 He was just doing the best he could. That’s all any of us can ask for.

      Take care and keep in touch.

      ~ Joleen

  3. tears are flowing…..the pain of losing someone you love is unbearable. i want to meet Frank.

  4. Natalie said

    Watching the trailer broke my heart all over again, as my father also had dementia. It is devastating to watch your loved one deteriorate until they cannot function on their own. The part where your dad calls you from the home made me cry so hard because that is exactly what my dad used to do. You feel so completely helpless and panicked because you want nothing but to help them & you can’t. Absolutely gut wrenching. My family went through the disease with him every step of the way with 24 hour care & hardly any sleep. Because, you know that the disease also robs them of the ability to know when they are tired. I can tell you that my family has never been the same. Tensions run high, people handle the disease differently. Thank you for making the movie & bringing more awareness to this disease. I hope that it will also bring awareness to how very hard it is to find good care for dementia patients once they have to be put in a home. Most homes just medicate them & leave them sitting around like cattle. A really good home will have more programs for dementia patients, such as cognitive therapy and provide more tenderness & one on one care. Good luck to you & know that I will be watching and recommending your movie to everyone I know when it comes out.

    • Natalie, one of my biggest concerns is the caregiving. From the unpaid caregivers at home, to the in-home paid caregivers, to the assisted living options. I’ve learned that NO ONE will ever be as good to your loved one as YOU. This is so frustrating! But it’s even more dire than that — it is hard to pick a facility or a company and truly KNOW that you are in safe hands. We got burned bad ourselves – and we’re very educated and well researched! More needs to be done to pave the way for people to make easy, confident decisions regarding care choices for their loved ones. You’re right, “helpless and panicked” and “gut wrenching” are solid ways of summing up the ugly sensation. I’m glad you’re on board and hope to see you around the blog! 🙂 ~Joleen

  5. Beautiful! I’m sure your dad is so proud of you. I can’t wait to see more and am sharing on facebook. What a beautiful tribute to your dad.

  6. Hey Jolene, very nice job on the trailer!!!. love ya lady

  7. Patti Matsumoto said

    Joleen, you and your Mom Fran have made this disease so pesonal. My family is going through this right now with my Mom and have been inspired by your example to love them no matter what. The challenges are sometimes so unbearably sad but keeping humor in the situation is a way to get through it. Thank you for documenting Frank’s progression and the family adjustment and love through the ultimate death. I thank God you didn’t stop there and have proceeded with your film – you have already won many awards in my heart! Patti Matsumoto

    • Patti, I just LOVE that I’ve already won awards in your eyes!! Thank you for supporting our family in our ongoing endeavor. You are also amazing for giving yourself so generously to your mom who is in such need of love, support, understanding, patience, and unconditional love. Just keep loving her… XO ~Joleen

  8. You’re the BEST! Go Joleen! You are my Hero, turning pain into power. I’m calling on everyone I can reach to support you.

  9. Sheila said

    I have followed your story/family after seeing the story about your Dads caregivers stealing from your family. Your Dad was an amazing man and Im sure he is truly missed. I can not wait to see your finished product! Thanks for enlightening us about Alzheimers!

  10. Stephanie Rynca said

    Joleen this is a truly wonderful thing you are doing by sharing the life of your Dad and putting this out there. It is very inspiring and I wish you all the luck and look forward to seeing more.

    Stephanie Rynca (from APT Rochester Hills)

    • Thanks for your support, Stephanie! That means a lot coming from you, especially considering that you aren’t dealing with Alzheimer’s in your life. But you still see the value in my message. 😉 Thanks for sharing and connecting with me! ~Joleen

  11. Lisa said

    Thank you for sharing the story of your journey with your dad. We recently had to put my father into an Alzheimers Assisted Living facility and I am having the same feeling that you had in the trailer for your movie. I feel panicked, helpless and sad. I know that my mom and I can’t care for him at home anymore but it’s so hard to let him go. Watching your trailer makes me know I am not alone.

    Lisa from Northville

    • Lisa, perhaps only a daughter can relate to this specific combination of feelings? You and I know. We wish we didn’t, but we do. The helplessness you feel amidst the ugly, uncomfortable, offensive situation… it was by far the most anguish and I’ve ever experienced in my 41 years. Thanks for sharing that you get that too. That means a lot, as I’m sure you know! 😉 I hope to see you around the blog-please subscribe! ~Joleen

  12. Diane Draveski said

    I think your documentary is a true gift to the world and I hope it is very successful. In my Master’s class (counseling) we viewed the documentary “The Forgetting” and it was good but yours is GREAT and most importantly I can tell your Daddy was a very special Daddy =) My dad’s name is Frank too (he passed away a few years ago) and I am a caregiver for my mother so I really liked how you wanted to bring awareness to that aspect as well. I hope you can post a link where we can attend fundraisers for your documentary, as I live in Shelby Twp. and am nearby. Thanks again for sharing your Daddy. Best of Luck, Diane Draveski

    • Diane, THANK YOU for the generous review!! I do feel like my documentary is different than all those that have come before it. Thanks for validating that. And it is my honor and pleasure to share my dad with you. He’d want to have met you! 😉 Also, I do plan to have community events wrapped around publicizing my project and raising money. Thanks for the suggestion. I’ll let you know when and where! ~Joleen

  13. Bonnie Lieberman said

    Joleen, I just watched your trailer on your dad’s illness and I will be waiting for the finished product. I am so proud of you that you put it out there for everyone to see. My mom is in a nursing home at the present time and has been for two years, she still knows us, but her short-term memory is gone, she cannot feed herself or walk, My dad just passed away in April at 91 and he visited her every day. I have shed many tears because the last place we wanted her to be was in a nursing home. So much needs to be done for these patients to make it better for them in their final days.

    Thank you again for your courage, your dad’s and the rest of your family.

    • Bonnie, thanks for sharing and for letting me know that you’re in a similar situation of heartbreak, frustration and sadness. My goal is to IMPROVE THE WORLD for people living with this disease. You’re right, there NEEDS to be better care options for our loved ones, plus less agony for the caregivers. There HAS to be a better way!

      I’m so sorry about the loss of your father. You must feel like you’re in a never ending vice grip. I hope you find some peace. I’m curious, is your mother aware of the fact that your dad no longer visits? Hopefully this (HUGE) detail escapes her. I’m sure she doesn’t need any more confusion, agitation or anguish. Hopefully she will be with him soon… I’m thinking of you all…

      ~ Joleen

  14. Janice Laughlin said

    This is a beautiful tribute to an obviously wonderful man. He reminds me so much of my father, whom I miss every day. Tears are flowing. We were blessed that my father’s passing was very quick, but my best friends mother has dementia as well. These diseases touch everyone inside and outside the families. God bless you and your family.

  15. Patt Fry said

    Dear Joleen:

    I am walking in your shoes now, as we speak. And no one can truly know the torment of living 24/7 with a loved one who you are losing and will totally lose before it is all over,until they too have walked in your shoes. To watch and listen to everything familiar being stripped away systematically until there is nothing left and knowing that this will be the final outcome…..and there is nothing you can do to but hold the familiar in your memories.

    I am my mom’s primary care giver. I take each day as it comes, and each day is different. Some days I feel such rage I shake my fists at God. Some days I cry my eyes out. Some days I am angry at my only sibling, my sister, who passed away 3 years ago, for leaving me with such a task.

    And then there are the days I head to work and tell one of my clients that my mom had both legs down the sleeve of her shirt when I walked into her bedroom……what a sight!!! It’s OK to find the humor….some days it’s your sanity.Just like children, you have got to find the humor in what they do when it seem like they are learning how to do something new. But unlike children who will eventually learn……you know that only the opposite will be the case. I cannot have what I want, my mother normal……so I cope the best I can with what I do have……my mother with Alzheimer’s.

    I can truly relate to your documentary and I look forward to seeing it in it’s entirety. It was very brave of you to take on this project.

    • Patt ~

      Thank you for reaching out and connecting! There appears to be a healing nature in finding your story within others. And I remember how isolated and alone I felt. Even best friends can’t comprehend the toll it takes on your soul. This is why so many of us feel alone. This is why it’s so important for us to reach out to one another.

      I must say, your attitude of GRATITUDE is so telling of the type of person you are and are striving to be! I say WAY TO GO, PATT!! You’re going to make it! 🙂

      And, yes, I agree — without humor my family would have struggled much harder. Humor is a wonderful tool for lightening a situation and melting built-up tension. When used in a loving situation, laughing at a simple quirky phrase or odd situation can do wonders for the soul! It’s not making fun of the person with Alzheimer’s. Laughing is healing for everyone. Oftentimes, my dad would laugh just because WE were laughing! I don’t think it’s a coincidence that laughter is contagious.. I think that laughter is contagious for a very good reason. We all need to take advantage of as many coping skills as we kind find at our disposal.

      Good luck to you, your family, and your mother, Patt!

      ~ Joleen

  16. Lisa said

    Joleen,
    When your father was ill, did you ever look into enbrel injections as a treatment option? My dad has has alzheimers for 4 years and I had not heard of enbrel injections until now! In case you haven’t heard there is a doctor in L.A. injecting patients in their spine and their Alzheimers symptoms are reduced dramatically. The doctors name is Tobonick. He has patented this use of enbrel (a rheumatoid arthritis drug) because it is off label. Have you heard anything about this treatment? It’s been around since 2008 and the drug company, Amgen, has not done the necessary clinical trials for monetary reasons, and therefore it is not a common Alzheimer treatment. There are you tube and videos on Tobonicks website that show amazing results. Just wondering if you or any one else has heard of this or is it too good to be true?
    Lisa

    • Lisa, I have seen some testimonial videos. They definitely show some amazing initial results! However, I haven’t been able to find any videos showing much beyond “one month later”. In these videos, I have seen people with later stage Alz who are lethargic and only stare regress to earlier stages of being able to clap, react with facial expressions and use some limited words. I’m not sure how far back it can turn time. If it could return patients to at least some level of self-functioning, it would indeed be a wonder drug!

      However, as was the case with my beloved father and his final wishes, once he could no longer self-function and his quality of life had immensely diminished, he didn’t wish to stick around any longer than necessary. It wouldn’t have been fair to him and his wishes to revive him slightly after he was already teetering at the edge. Perhaps if we could have brought him back halfway or more, it may have been a consideration.

      Regardless, the non-clinical results are still VERY exciting and hopefully trial scientists will continue to explore this avenue. Perhaps if it’s used earlier vs. later the results could be more spectacular? As I’m sure is true with all diseases, if there were a cure like the results of the movies “Awakenings” or “Cocoon”, the world would be a much happier place!! 🙂 I wish Godspeed to the scientists worldwide working diligently to find a cure…

  17. Paige said

    I am so thankful that I came across your project somehow. I think it is absolutely beautiful! I work with the elderly on a daily basis and they have always been the best part of my life. I find myself wanting to fight for them and fight against this horrible diesease. I am working towards my degree in marriage and family therapy with a specialization in geriatrics. But my main goal is to use this degree to somehow begin counseling and support services for the caregivers of Alzheimers patients. I dont know where to even go to start making a difference though. I know I make a difference in the everyday lives of my residents but I want to go bigger, make a more significant difference. Sometimes I find myself becoming so overwhelmed with my passion for the cause because it at times feels like we have so far to go. The numbers are rising, but our societies understanding and adaptation to everything is too slow.Coming across your blog and documentary has reminded me of my purpose and I hope your movie makes it all across the country, the mesage is too important for people to miss.

    Thank you again for sharing Franks story 🙂

    • Paige ~

      I’m so glad you stumbled across my blog too! Welcome. It fills me with great excitement to hear that I’ve reminded you of why you are in healthcare and caregiving for a living! I know the climb seems steep sometimes in regard to disease awareness and helping others, but saving one life at a time and one family at a time is honorable and helpful as well. Cheers to you and what you do for others! I look forward to you sticking around…

      ~ Joleen

  18. Bakhus Saba said

    Here’s the link to the video Still a Child

    If you can post it on your site, facebook or share your friends it would be great
    It can be purchased on cd baby http://cdbaby.com/cd/johnlaw2

    Thank you

    Bakhus Saba
    Still a Child

    If you knew what I was going through,
    You’d approve of what I had to do.
    Putting you away for the rest of your days,
    Plays on my heart and it tears me apart

    I walk away with you on my mind,
    It’s killing me to leave you behind.
    You’re begging me to take you home,
    But I feel so guilty because I leave alone.
    Chorus
    Cause I’m still a child when I look in your eyes.
    And it make me cry and it make me cry
    Now every hello feels like I’m saying goodbye
    Goodbye good bye good bye

    If I could have you back for one more day.
    Would you reassure me what I’m doing is okay
    Would you comfort me and ease my mind,
    Cause only you can help me find my way

  19. C.Morrow said

    I was one of your father’s care takers. It’s been almost three years, but I remember on the last night of him being assigned to me as a patient before he was discharged from the hospital, do keep in mind that his thoughts at this point were very obscured and his speech patterns were nonsensical, however, while eating a bowl of Rice Krispies your dad looked up at me and randomly said in a moment of clarity ” Live life for all it’s worth.” Wish you and this website much sucess.

    • WOW. This really took by breath away as I ran in the door from work and errands tonight after my first day back after the holidays. How thoughtful and caring of you to stop and share this priceless morsel with me! I can SO see this happening! What a GREAT “Happy New Year” message to us all, sent from heaven above… THANK YOU, thank you, thank you! My dad definitely had a way of impacting people he met along the way, even when it was just a small moment in time… xo

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