Many know Kimberly Williams-Paisley as the bride in the popular Steve Martin remakes of the Father of the Bride movies, the calculating Peggy Kenter on the popular TV drama Nashville, or the wife of country music artist, Brad Paisley. But behind the scenes, Kim was dealing with a tragic secret: her mother, Linda, was suffering from a rare form of dementia that slowly crippled her ability to talk, write and eventually recognize people in her own family.
Where the Light Gets In tells the full story of Linda’s illness—called primary progressive aphasia—from her early-onset diagnosis at the age of 62 through her passing. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering.
Ultimately the bonds of family were strengthened, and Kim learned ways to love and accept the woman her mother became. With a moving foreword by actor and advocate Michael J. Fox, Where the Light Gets In is a heartwarming tribute to the often fragile yet unbreakable relationships we have with our mothers.
Where The Light Gets In was born out of an essay Kim wrote for Redbook magazine in 2014 called “Is My Mother Gone?” The piece chronicled the impact her mother’s dementia had on her and her family, and created such national attention that she decided to delve deeper with a memoir. Through her work, she has become a spokesperson for the Alzheimer’s Association, speaking at various fundraisers and events throughout the country in the last few years.
In the past, Kim has also published articles for In Style and New You magazines, as well as a year-long column for Redbook entitled “My Life as a New Wife”. She and her father Gurney Williams co-authored the children’s book, Henry and the Hidden Veggie Garden, and she wrote a chapter for the Zondervan-published book The Mother and Child Project: Raising Our Voices for Health and Hope, a project to help support the health of mothers and children around the globe.
In other charitable work, Kim hosted the critically-acclaimed series, NPT Reports: Children’s Health Crisis for Nashville Public Television. The program won a Midsouth Regional Emmy for its excellence in documentaries in the Community Service Category. She is also actively involved with JP/HRO, Sean Penn’s Haitian relief organization, which is currently working to improve the lives of the people of Port-Au-Prince. She is also a member of the Entertainment Council for Feeding America, a Nashville Zoo Board member, and a supporter of various animal rescue organizations.
Kimberly Williams-Paisley recently completed filming (starring role) in Darrow & Darrow, for The Hallmark Channel.
Truly Alive: It seems that anger was not necessarily a new emotional expression for your mother, we all get angry, but the ways she started expressing it were new. When did you become aware that anger, expressed in this new form was a symptom of a disease?
Kimberly Williams-Paisley: She had some behavioral changes before we knew she had had this diagnosis. Only in retrospect did things become clear. But during the time we first noticed symptoms, I was getting engaged…the first in the family to be getting married. My husband wasn’t someone my parents thought I would marry. I thought the changes we observed were typical family changes that were hard on my mom but;. But she seemed to be treating the situation irrationally and taking it harder than anybody else. She became increasingly manic. There were a lot of things we thought it could have been; but in retrospect, we believe it was linked to her dementia diagnosis. She was diagnosed in 2005 at age 62. But of course, that was after a few years of exhibiting the symptoms.
TA: How long after the initial symptoms of aphasia became noticeable was your mother formally diagnosed?
KWP: Probably about two years.
TA: How many doctors did your mother see and how did she finally receive a diagnosis?
KWP: I don’t know how many doctors she saw overall. My parents were very secretive. They kept a lot of the information about the symptoms and visits to doctors from us. They kept all of this secret during the early stages of her disease. There were a lot of things I didn’t know about or only heard about later.
They did go to many different doctors and specialists in an effort to get at the root of what this problem was. The initial symptoms had to do with language. She started having trouble finding the right words, forming sentences and struggled with language at first more than anything else. Now that she has passed away, we know that she had Alzheimer’s. She had a rare form of aphasia called Primary Progressive Aphasia caused by Alzheimer’s disease.
TA: What sort of things exacerbated her symptoms?
KWP: That changed over the years depending on where we were in the phase of the disease. In the beginning, I was getting married and that made her very emotional and angry. At the time she was working at the Michael J. Fox Foundation for Parkinson’s Research. She was one of their great fundraisers and helped start the development department. She kept working, but found it to be increasingly challenging to deal with spreadsheets and working through the budget. Ultimately, her greatest difficulty was in ‘making the ask’ and actually getting the words out when meeting with donors.
TA: As time went on, what type of things calmed her when she was exasperated?
KWP: Music did soothe her. That was effective to the very end. There have been studies done that demonstrate music will awaken parts of the brain that are dormant. We found that with her if we played songs that she used to love when she was healthy, it would bring out a spark in her and sometimes she would even feel joy. Occasionally this was successful in bringing her out of a bad mood. She also responded well to touch and massage. And laughter would always make her happy. It didn’t matter what someone was laughing about. She loved hearing it, responded to it and would feel happy.
TA: Your insights and frankness about how you felt during this difficult time are inspiring. How long after you realized she was ill, did you realize you could connect and share love with her in ways you weren’t used to?
KWP: It took me a long time. There were times when it was easier and times when it was harder to connect with her. I had to disconnect the disease from my mother. I had to remind myself, “she is not the disease”. In many circumstances, I recognized that it was not her fault and I wanted to forgive her. Although, I now realize that there were some things she could have done to prepare. This goes back to your earlier question. Had she known this was coming, she could have done things to make it easier for this family when she could no longer take care of herself. This would have included simply writing down her wishes for what she wanted in terms of her care. This would have helped in absolving ourselves of guilt, because that got in the way of us moving forward…it got in the way of healing and being able to reconnect.
Once she was moved out of my dad’s home and into a dementia facility, that is when the burden lifted, (not financial wise but otherwise). After that, I was able to let go of a lot of the anger, pain and guilt I felt and reconnect with her. I was able to see her for who she was, totally embrace this new person and say good bye to the old mom. The thing that was hardest was seeing the ghost of her compared to who she had been. That was a stressful inner conflict. Once I was able to look past the ghost of who she was, (speaking of the perceived diminishment as my reference point), I was able to see this person who was delightful in so many ways. Living in the moment is something I could learn from. She still loved people, loved laughter. And we shared a love of music.
KWP: Oh yes, many things! This was a disease that affects all of the family. I think we look back and say, “if only we had done this or that”. However, the potential is also that if we did this all again, we would make the same mistakes. It is not an easy thing to navigate. There are some very specific things that I tell people now that I wish we had done earlier. Perhaps the most important is to pay attention to the primary caregiver. A lot of focus is on the patient. But the caregiver is the person who shoulders the burden and is aware of what is happening when the patient is not. Caregivers are at risk for all kinds of physical and mental health issues and themselves need a lot of support. My dad wanted to be Superman. He was very loyal. They had had a strong, long lasting relationship and he wanted to be there until the bitter end. It became clear that it would kill him to continue on in that role before she would meet her end. I wish that we had insisted that he had gotten get more help earlier on. By the time he accepted help, he was already broken. He is doing well now but will never be the same. Nobody would be after a journey like that.
I also wish that we had gotten help from doctors to take the car keys away from her. I feel we got lucky that she didn’t kill herself or others when getting behind the wheel of a car. The Alzheimer’s Association has an entire page on this topic (when a patient afflicted with this disease insists on continuing to drive a car). You can insist on a driving test or probably best of all, get a doctor to issue a prescription for no more driving. Or you can do like my dad did and dismantle the car. You can take the battery out. Something like that. It is really dangerous for impaired people (like those with dementia or Alzheimer’s) to drive a car. They are worse than drunk drivers.
Also very important, I advise: my advice is to have the person write down their wishes.
TA: How has writing about your personal experience with Alzheimer’s or Primary Progressive Aphasia affected you?
KWP: I figured out (after I wrote about it) what I felt about all of it (after I wrote about it)all…what this experience meant to me and to my life. It helped me turn a tragedy into something hopeful. I came away from this feeling that it wasn’t all for nothing. I have learned valuable lessons. And I want to share those lessons with others.
TA: Is there anything you would do differently in hind sight?
The writing process helped me gain an even greater impression of my mother and consciously develop an understanding of the kind of mother I want to be. It really challenged me to look at it all closely and determine how I wanted it to be. It also connected me to a great community of people. While going through the actual experience, we all felt isolated. But now there is great support from a wonderful community. We did a fundraiser last year that raised a lot of money for the Alzheimer’s Association. It’s great to be a part of this community.
TA: How is your dad doing since the book has been published?
KWP: He is doing really well. He is staying active and involved with friends. He climbs, he is enjoying his girlfriend and they do a lot of things together.
TA: What are you hoping people will get out of reading “When the Light Gets In”?
KWP: My greatest hope is that readers will see how love shines through even in the darkest of times, and every day to find blessings – even in the darkest challenges. And, it’s a mother/daughter/family story. Even people who don’t have dementia in their life can relate to aging parents, long distance care-giving, changing dynamics in the relationships with this generation and how we navigate that.
TA: Is there anything else you would like our readers to know about?
KWP: We started an annual Alzheimer’s fundraiser. Proceeds go to the Alzheimer’s Association. Last year we had a blast. We wanted it to be a fun night that celebrates life and music because we are in Music City, Nashville. My mother loved music and my husband is a musician. Last year, we had a disco party. Everyone came in costume. We asked country music artists to get up and sing disco songs. It was incredible fun and we raised a lot of money for the Association. The plan for next year is to do an 80’s party. I love the idea of people coming in costume and featuring ‘period’ music. The event will be in June of 2018.
I do a lot of work for the Alzheimer’s Association, Care.org, Sean Penn’s organization JP/HRO and a local/national organization helping people in Haiti. Also, something I am really excited about, my husband and I are starting a non-profit in Nashville that will soon be up and running. We are really excited about that and will announce the details about the non-profit early next year.
Purchase Where the Light Gets In online, or at your local bookstore!