Update: One day after this news broke, amid outrage from the Reagan family and the Alzheimer’s community as a whole, Will Ferrell has pulled out of the film.
While I’m very thankful for this, the entire situation is indicative of a much larger issue. The events of the past two days illustrate there is a widespread misconception about exactly what Alzheimer’s is and what the disease does to everyone it touches. The fact that a comedic storyline of this nature was conceived of and a production company took on the project remains a travesty.
It’s a powerful reminder that we, as advocates, must remain tenacious as we go forward to educate the public about all forms of dementia. Perhaps Mr. Ferrell will now join us on that mission.
I am encouraged by the fact that over the past 24 hours, the outcry of thousands was heard loud and clear. It is my hope that at the end of the day, the media attention this yielded will help further our goal of bringing Alzheimer’s out of the shadows.
Patti Davis wrote an eloquent update to her earlier open letter, which you can find on her website, and my friend and fellow advocate, Mike Belleville, has started a petition calling for the script to be destroyed. As a 55-year-old living with younger onset Alzheimer’s disease, Mike has rather strong feelings on the matter. Please sign the petition and share widely on social media, asking others to do the same.
I haven’t been writing much due to lack of time and inspiration. However, upon reading about Will Ferrell’s upcoming film, Reagan, I find myself spurred by the asinine notion that Alzheimer’s disease provides an acceptable comedic storyline.
For those who haven’t heard, Ferrell will portray Ronald Reagan “in the throes of Alzheimer’s” for a comedy feature he is also producing.
Clearly Mr. Ferrell has not watched helplessly as his mother literally lost her mind before his eyes over a long, slow, painful decade. He has not swapped roles with a strong, beautiful, independent woman in her mid-60’s, becoming her parent as she became a child again. He doesn’t know what it’s like to see the person who was always his rock suddenly need help with even the most intimate, personal activities of daily living.
I doubt Will Ferrell has had to take his mother’s car keys when it was no longer safe for her to drive or tell her she would have to leave her home because that, too, had become unsafe. He hasn’t received a phone call on a snowy, sub-zero winter night, and heard the voice on the other end of the phone tell him his mother has eloped and was found wandering up the middle of a busy street in the dark.
The actor hasn’t desperately tried to calm his mother when she screamed for hours on end, unable to explain what was wrong because she could no longer communicate verbally. Will Farrell has never stood by as his mother accused him of stealing from her because the paranoia that comes with Alzheimer’s had turned him into an enemy. Nor do I imagine he has watched as she was terrorized by the hallucinations that also accompany dementia.
Mr. Ferrell hasn’t fed his mother when she could no longer feed herself. He hasn’t seen the emptiness in her eyes as she blankly stares off into space, oblivious to her surroundings. He doesn’t have particularly poignant milestones indelibly etched in his mind – like the moment he realized his mother no longer remembered how to put on a pair of pants. And, he probably doesn’t know what it’s like when friends and family stop visiting because they “can’t handle seeing her like that.”
He hasn’t listened to his mother beg over and over again to “go home” or watched tears stream down her face when she’s having a moment of clarity and knows darn well something is terribly wrong. He hasn’t heard his otherwise non-verbal mother suddenly cry out, “HELP ME” or “I WANT TO DIE.”
God willing, Will Ferrell will never have to give his mother morphine to keep her calm and comfortable until the hospice nurse arrives in the middle of the night. And he won’t be forced to watch as Alzheimer’s ultimately kills her.
The experiences  I’ve mentioned in this piece provide a tiny glimpse into what it’s like to lose someone to this horrific disease. Believe me, what you’ve read is the sanitized version of reality. I saw a headline earlier this evening that asked, “Can Will Ferrell Make Alzheimer’s Funny?” I’ll let you be the judge.
Patti Davis, daughter of Ronald Reagan, has released an open letter to Will Ferrell. I hope you’ll take a moment to visit her website to read it. If you are as outraged as many of us, please share Ms. Davis’ letter widely.
 Patti Davis, An Open Letter to Will Ferrell, 04.28.16. http://booksbypattidavis.com/an-open-letter-to-will-ferrell/
 This is but a small sample of actual experiences I (and millions of other family caregivers ) have lived.
Your voice as well as those of other families living with dementia have been heard, I understand the project will not move forward.
Ann Napoletan said:
Hi Lori. Thanks for commenting. I know that Mr. Ferrell has exited the project, but I haven’t heard the production company has given up on it. The film could very well move forward with someone else playing Reagan.
I’m so sorry Ann ❤ She is at peace now and you are creating meaning and purpose from her suffering ❤
Ann Napoletan said:
Love you, Susan. xo
Although the thought of doing something comedic about this epidemic we call Alz/dementia is bordering on tasteless, come on. For heaven’s sake, did you not have at least one incident taking care of your mother where you just had to laugh!? Seriously? I could fill a book with stories of taking care of Graminator where I just jumped into her world with a sense of humor and an outlook where I simply refused to cry. Talk to anyone about this disease and yes, they look sad or say something poignant and then before you know it, they tell the sweetest, funniest story about their grandmother, uncle, spouse, mother, father, and you cannot help but smile. Yes, it’s a vile disease, it destroys lives, families, bank accounts, but good grief, if all you do is weep and wail over it, how does that help anyone get through a day, a week, a year of caregiving? Laughter IS the best medicine and it certainly beats the alternative. I took care of my mother-in-law, in my home for ten years , 24/7 and yes, we had awful days, terrible times, but we also found ourselves laughing over some of the strangest events…have you ever found a pair of dentures smiling at you from the water pitcher in the fridge? I thought so…Peace, love, patience and understanding to you all.
Ann Napoletan said:
Yes, I absolutely laughed; humor saved me many times over that decade. And my mom would have wanted that. However, as both an advocate and daughter who has lost her beloved mother – relatively young mother, I might add, I see this film as something entirely different.
There are already too many misinformed people out there; people who still believe Alzheimer’s is nothing more than losing your keys – or that every “old” person loses their memory. This movie, if made, will further fuel that misconception.
That is my point in this post. Me laughing at my own personal situation is one thing; a movie about it – entirely different. As advocates, we are trying to get the world to take this disease seriously and to understand it is going to bankrupt Medicare if we don’t do something and do something fast. A comedic depiction does not convey that message. Many of us have made advocacy our life work, and we work our tails off to educate the public. I’m not in favor of taking a step backward.
Bravo Ann and all other dementia care people worldwide for speaking up ❤
Ann Napoletan said:
Back at’cha my compassionate, passionate, incredible friend.