Linda Williams left an indelible mark on The Michael J. Fox Foundation (MJFF) as our first major gifts fundraiser. While working at MJFF, Linda was diagnosed with primary progressive aphasia — a rare form of dementia. Her daughter, actress Kimberly Williams-Paisley, has published a memoir, “Where the Light Gets In,” chronicling her family’s journey with her mother’s disease. With a foreword by Michael J. Fox, Linda and Kimberly’s story is an intimate portrait of a family coping with the ripple effects of diagnosis.
Veronique Enos Kaefer, director of Advancement at MJFF, worked with Linda. She spoke with Kimberly about the toll diagnosis can take on families and, in particular, adult children of patients.
Veronique (MJFF): Your book is beautiful and brave. It’s going to be so meaningful to families living through dementia, Alzheimer’s, Parkinson’s — any neurodegenerative disease that affects cognition.
Kimberly Williams-Paisley: That’s my hope! I imagine there’s still hardship to come in my mom’s journey, but it’s easier now to look at it and see the beauty in it.
Veronique: At what point did you realize that Linda’s story should be told?
Kimberly: I remember going to Haiti after we had to place my mother in full-time assisted care because I thought, I can’t help her here anymore, and I think she’d want me to help people there. When I got back I thought, what else can I do? I wanted to start talking publicly about my story and even joked with my family about writing a book. And so I did a story for Redbook magazine. After it was published, I was amazed at the responses I got. It was healing and wonderful to connect with other people in similar situations.
Veronique: Throughout “Where the Light Gets In” you share surprising moments of light — times when there is calm, perspective, hope and happiness. What would you say to someone in those early days who is facing a diagnosis and wondering, Can my life still be good?
Kimberly: Absolutely! There have been many moments of joy. My mother’s excitement and passion for her family grew as the dementia progressed — in some ways she was more delightful than she’d ever been. Her relationship with my son Huck was incredible and lovely, and the energy she had with him outlasted all of us. I would say to someone facing a diagnosis that it’s not all bad. Yes of course there is sadness and struggle and change, but also a lot of joy. I would encourage patients and caregivers to reach out to support groups, to get help. In my family there was a tendency toward secrecy and thinking that we could do it all by ourselves. But there is a very large community in the dementia and Parkinson’s arena. It can be healing, even sustaining, to connect with that world.
Veronique: Linda was an incredibly dignified person, though she had a huge capacity for fun. She was strong and compassionate, a devoted mother and a respected leader at MJFF. Was it challenging to share the parts of her illness that are not beautiful and glossy — the reality of changes and loss that can come with dementia?
Kimberly: I still wrestle with it a little, to be honest. There are moments in the course of her disease that I know my mom definitely did not want exposed, but I also know she has always wanted to do good in the world and spread hope. In writing her history, I needed to do it truthfully. And the truth is there were a lot of dark and ugly times, but also beautiful and even funny days. My mother really admired Michael J. Fox and his bravery in telling his story and using it to raise awareness and accelerate research. My mom believed in what he did and loved him for it. I think about that now when I’m telling her story. The way she thought of Michael is how I think of her, that she would want to portray the sad realities as well as the hope.
Veronique: What do you wish you had known at the beginning of your mother’s diagnosis that you only discovered along the way?
Kimberly: I wish I’d insisted that my dad, the main caregiver, get help and that my mother had given more specific instruction as to what she wanted in her last years. I would’ve liked to hear I trust you and the decisions you’ll make. Also, my mother knew this was irrational, but somehow she feared this disease was her fault. She was also afraid that when people learned her diagnosis they would think she wasn’t smart. I understand that fear, but I wish my mom had been able to let go of that. It might have opened her up to asking for more help.
Also, there should be a balance between respecting the needs and limitations of the patient and the needs of the caregiver as the disease progresses. It requires a lot of communication and love. We had the love part. We should have enlisted outside help so we weren’t the bad guys, especially when it came time to insist that my mother no longer drive. It was painful watching someone like her, a person who had always been adventurous, suddenly lose her independence.
Veronique: What would you say are some of your biggest family successes in this journey?
Kimberly: I think we showed extraordinary love for one another. That’s what I come away with. We really respect each other and the different ways we see this journey. This is an ongoing journey for us. There are good days and bad days. It’s about becoming comfortable with what’s uncomfortable. And we’re grateful for the moments of joy. I would say in some ways we’re as close as ever as a family.
Veronique: If you could describe how you want your mother to be remembered, what would you say?
Kimberly: Joyful, passionate, empathic. She cared deeply about the people around her and loved with her whole heart. She was also very impish, loved to laugh — she had a sparkle in her eye and loved to get into mischief!
Veronique: Is there a final message you want to share with families coping with any life-altering diagnosis?
Kimberly: When we’re faced with any kind of challenge in our lives it’s an opportunity to grow, to open our hearts, to form stronger bonds in our community, and with our family and our loved ones. You will meet angels who are wise and wonderful and helpful. We have people in our lives from of this journey who will now be lifelong friends because we’ve weathered this storm. We are different people, and better for it in many ways.