MIMBolide Productions Co.

P.O. Box 3050
Carmichael, CA 95609

Project Hope: Our Stories

As we all know, Alzheimer's is not only something that happens in the movies. Nearly everyone knows someone who has suffered from this disease. Similarly, Proposition 8 had a negative effect on many loving couples and families.

These are our stories, written from the bottom of our hearts. Please feel welcome to read and share our stories with others.

  • "I learned the word "Alzheimer’s" when I was only five-years-old. Every single Sunday after church, my family would pile into our green Chevy sedan and make the hour-long drive into Napa so that we could take my dad’s grandpa and grandma out to lunch. My brother and I knew that Pop and Opal weren’t your ordinary great-grandparents and in some ways, we were closer to them than our own grandparents whom we saw far less often.

    Pop was half Oklahoman Cherokee and half Okie farmer who could grow the sweetest corn and the crispest peas out of a crack in the sidewalk. He braided Cherokee bracelets for me one spring, and Opal and I would play dolls after lunch. (And by play, I mean, we would sit at the foot of the bed where the collectable dolls lay reigning supreme and untouchable on hand-sewn lace pillows, and we would make up stories and names for them from afar.)

    What I didn’t realize then, was that we spent so many Sundays with them because Pop had been diagnosed with Alzheimer’s disease and my dad had wanted us all to spend as much time with him as possible. What was at first, just a hard-to-pronounce word, soon became the reason why we no longer drove to lunch together. Instead, we would sit on that tweed sofa, while Meals on Wheels heated up a hot dish and green beans and rice, and we would chat about our lives and the family, while Pop sat there and smiled. Opal would pat his hand and offer him some more food, but he didn’t venture into the garden anymore, and we never left the living room.

    Soon after Pop died, Opal passed away, too. They say that’s what happens when the love of your life leaves before you do. When part of your soul slips away, there’s really not a whole lot left to hold you down. As I grew older, the memory of those Sunday afternoons never faded completely away, and now that my husband and I have our own two children in tow, we have begun the lengthy trip from Sacramento, to Santa Rosa, for the first Sunday of every month so that we can have lunch with my own grandfather. My dad’s dad. Pop’s son. Who has just been diagnosed with early stages of Alzheimer’s.

    The filtered memory of my five-year-old self was idyllic compared to what it is like to watch my grandpa repeat the same conversation we just had ten minutes before. Or call my cousin by my aunt’s name. Or worse, stand still as if he had just completely forgotten what he was doing a moment before.

    Alzheimer’s is not just a word from my past, from a distant relative I once knew when I was girl. It is the every-day realization that right at this very moment my grandpa, "g-pa-great" as my daughter calls him, is slowly slipping away. It is living with the knowledge that in the infinitely-too-soon future, these brief episodes and lapses of memory will become permanent. There is little solace to be found in the fact that what will come is inevitable. Instead, we find comfort in our Sundays together. My dad will always sit next to his dad at the table, and they both will fiddle with their hearing aides to get them tuned to the right frequency before we all talk about our lives, our weeks, the family. My grandma will pat grandpa’s hand to get his attention and she’ll say a little "thanks" before we eat a meal together.

    Perhaps by the time my dad reaches his father’s age, my brother and I will be taking him to lunch just for the fun of it, and not because we are trying to get a lifetime of memories into the last few days of clarity. This is why we pray for a cure. This is why we are thankful for every single person out there who is researching this devastating illness. For all the Pop’s and G-pa-greats out there. Thank you for reading my story."


  • "Prop 8, both the actual measure and the surrounding debate, caused a lot of pain for me and for my family. Each person in our household was impacted a little differently, but all of us were impacted. My partner Sue was angry, and felt like we were being made to choose between a "quick" marriage or a loss of rights altogether, and was not at all convinced that if we got married before it was overturned that it would be upheld anyway. My oldest son Noah could not believe anyone would want to discriminate against gay people; he didn't understand why anyone would care whether or not people got married. He held up signs outside of our polling place and on our street corner, encouraging people to vote against hate. Our younger boys Michael and Eli were unaware generally, but most happy to stand outside the polling place reminding people to vote no on 8. I was hurt, both by the horrible advertising campaigns as well as by what I perceived to be apathy on the part of heterosexual allies. So few picketed, and many were so enthralled with Obama being elected that the news of prop 8 passing hardly phased them. I was devastated when gay marriage rights were overturned, and it took me a long time to get out of the funk. For months afterwards I kept the No on 8 lawn sign on my front lawn, until a complaint filed with the city forced me to remove it. That, of course, refueled my anger and hurt.

    Sue and I have been together for nearly 19 years. We have three children together, are active members of our church community, play with our kids, volunteer in their schools, are committed to service work and to raising our young men. For the most part, we are a pretty mundane family, trying to figure out how to juggle work and family and still find a little time to exercise or go to a movie. In short, we are a typical, educated suburban couple, yet we are denied the same rights that heterosexual couples so freely enjoy. We file our taxes federally as single people then must recalculate and file them jointly for California as "separate but equal" domestic partners. It feels very much like the segregation in the 1960s American south. By no means do I feel like my family has ever been treated as equal. We disagreed about whether or not the institution of marriage was one we wanted to enter into, but we both wanted the right to choose. We lost that, and the pain of not having that choice lingers.

    Good things did come out of this. People who thought there was NO WAY Prop 8 would pass were mobilized into action. People saw the truth that homophobia still exists. And people came forward to express their hurt, their pain, their anger at the unfair treatment of their friends, their colleagues, their community members. Allies were born, and for this, I am grateful."

    -Lisa Papagni

  • "I have, many times in my life, found myself blessed with the compassionate acts of others. One of the most significant of these gestures came at a difficult time for my family, when my grandmother was diagnosed with Alzheimer's disease. This disease is one of the most torturous of all medical conditions as it slowly robs a person of who she once was. My grandmother went from her life as a conversationalist and an artist with a wonderful light of laughter and levity in her eyes to a shell of a person that could do little more than stare at her beloved family with the same interest that she examined the wall paper of her room. Through this demeaning degradation of his wife, I never once saw my grandfather pause in his devotion or care for my grandmother. He helped her to eat, to bathe, to take care of all of her biological necessities. He read to her, continued to talk with her when she no longer knew who he was or what he was saying, and reassured her of her safety as she violently insisted he was a stranger who had kidnapped her. Eventually, my grandmother's condition reached the point where it was necessary that she move into a nursing home. But, my grandfather's level of care never wavered or diminished. His visits were daily and his smile was bright. He was by her side until finally, after much silent pain, she succumbed to the disease and was allowed some peace in her sleep. Compassion did not save my grandma and it is possible she never knew of all the sacrifices my grandfather made on her behalf. However, it was the spirit of his acts, his eternal love, that demonstrated the essence of our divine nature as humans. In that moment, I knew. I knew that this is what we must all aspire to be. "

    -Director Sarah Barbulesco

  • "My grandfather had Alzheimer's. I did not have to deal with it directly, but my father, his siblings, and my grandmother all had to. Over the course of about six years, he got worse and worse. I can remember my father talking about his later visits with my grandfather - who could not remember his wife or any of his kids. It was very painful for them to go through. He would leave his room in the hospice and forget where he was. He would be taken back to his room and not recognize anything there, including the belongings he had brought with him when he moved in - things that had been with him for decades. When he finally passed, it was almost a relief in that his suffering was over, though as degraded as his mental condition was, I'm not sure he knew his own suffering. He was a man who was highly educated, proud, and knowledgeable about the world - who was reduced to the mentality of a two-year old by the time he died. It has shaped how I look at the world. I fear loss of mental capacity much more than physical loss - all because of what I saw of his decline and what it did to those who loved him (and he once loved)."

    -Karl Baur

  • "My sister, Nancy, suffers from senile dementia and lives in a nursing home, with me holding Power of Attorney. Last February, when she felt she could no longer live alone, I helped her move into an assisted living facility. At that time, she was still capable of paying her own bills, so I didn’t take on this responsibility, even though the POA allowed me to do so. By June, Nancy’s situation had worsened enough that she stopped paying any bills, a fact I didn’t learn until last fall, when I was called by a collection agency for non-payment of a $1200 prescription bill.

    I was told that the bill was so high because Nancy's Medicare D coverage had lapsed due to non-payment of the monthly premium. At about the same time, I learned that her supplemental Medicare B insurance (held with State Farm) had also lapsed.

    Now comes the Catch-22, or rather two Catch-22s.

    During Medicare D open enrollment in December I enrolled Nancy in a new plan. The bill that comes each month includes a penalty of $1.30, assessed because Nancy had been without coverage for more than the allowed number of days (I think 90) at a point in time after the deadline for initial enrollment. The reason for the lapse makes no difference. The penalty arrives month after month, as sure as the rain.

    When I called State Farm, I received a similar response. I was told that the Medicare B insurance could not be renewed because my sister suffered from a pre-existing condition---the condition, of course, being senile dementia, the cause of the lapse. Checking further, I learned that while some states accept senile dementia as a justification for renewing lapsed coverage, Ohio (where Nancy lives) does not. So every time there is a Medicare charge, also as sure as the rain, I receive a form letter from State Farm, notifying me that supplemental coverage has been denied. My only consolation is that it costs them a little to send that letter each time, a cost they could avoid if they would bother to update their records."

    -Professor Karl Zender

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P.O. Box 3050
Carmichael, CA 95609