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No Small Roles in the Fight to End Alzheimer’s

No Small Roles in the Fight to End Alzheimer’s
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November 28, 2018
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Actress Nikki DeLoach is best known for her role on the series “Awkward” and her television movie roles on the Hallmark Channel. In the past year, her family has faced both her father’s diagnosis of Pick’s disease, a type of frontotemporal dementia (FTD), and the open-heart surgery of her newborn son Bennett.
Tell us about the last year and your experiences with your son and father.
In my house, we call the past year "the best and the worst” year of our lives. In the past year, I’ve experienced two open heart surgeries with my baby and the diagnosis of my father with Pick’s disease.
Both experiences were extraordinarily challenging and traumatic, however, my faith has grown exponentially. I am reminded daily of all of the miracles that have happened, the times we’ve been given mercy and grace as a family. We have hundreds of angels surrounding us — dropping off food, taking my oldest son on playdates and sleepovers, prayers … lots and lots of prayers. We are very blessed to be surrounded by an incredible community of people who have lifted us up in our time of need.
We live in times where there is still a stigma around sickness. My husband was hesitant to share information about my son’s heart defect with others. My mom felt the same about sharing my dad’s diagnosis. I knew from past experience that it is critical to not only reach out and ask for help but to share your story. When I gave birth to my first-born, Hudson, I didn’t want to admit to myself that I was going through severe postpartum depression. The shame I felt about not having those warm, fuzzy feelings other mommies felt after giving birth was palpable. I was struggling, and I waited a very long time to seek help, which was detrimental to me and my family.
I approached Bennett’s heart condition differently. I knew I would need help. After getting the word out about what we were dealing with, we had a referral for an appointment with the top children’s heart doctor in the country within a week. I have seen firsthand the power of asking for help when you need it; I no longer wait to ask. Also, by you sharing your story, you empower others to open up so that they no longer have to move through their pain in isolation.
When it came to Dad’s diagnosis, I said to my family: “People want to help us. People want to reach out. There are other people going through this, and we will never know how sharing our story may help another family.” When I know someone else is going through what I am going though, it helps me as much as it helps them. It helps us all feel less alone. I want people to be able to speak more openly about the help they need, because I have been there, and I know how important it is.
Dad’s diagnosis of Pick’s disease is very rare and affects the frontal lobe of the brain. It is fatal, and very aggressive. This illness completely changes the person. My dad is not the same person he once was. He was my touchstone, my moral compass … the most kind, loving, honest, patient and emotionally available human. I always used to say that he was so calm that he was one step above being asleep all the time.
There is not an ounce of that in him now. His patience is nonexistent. He can’t sit still; he sits down for five seconds and then begins pacing or heads out the door again. His memory doesn’t seem to last more than 60 seconds.
Dad always prided himself on “looking sharp”, as he would say. He wore nice cologne and loved to put on a crisp, ironed shirt. Now, we have trouble getting him to shower and wear clean clothes. One morning my mom discovered that he had put on four different shirts and two pairs of pants.
Although Dad was diagnosed just last summer, his symptoms have swiftly progressed. He may not even know who his kids are in six months.  We saw this with my grandfather, who passed away with Alzheimer’s disease. In that case, however, grandpa progressed slowly, and my family was able to wrap our brains around each transition. With Dad, it has been dropped at our doorstep. “Boom! Dementia is here.” Oh, and did I mention that he is only 64 years old? Yes. 64 years old. It’s devastating and so painful to watch and experience.
How has your mother been coping as a caregiver since your father’s condition has progressed?
It has been so hard. She is not only losing her husband, she is losing her friend. She has to be ten steps ahead of him all of the time, which is exhausting. She often lives in fear of him hurting himself or someone else because he is losing his ability to understand safe behavior.
We have to be super mindful of the spouses of people with the disease. They often experience a decline in health as well. The wear and tear caregiving does on the body and mind is substantial. It is a 24-hour job.
My mother has risen to the occasion in such a way that nothing short of heroic. However, heroes also need a team of people that lift them up and support them. This is why I encouraged her to reach out to her local chapter of the Alzheimer’s Association. The people who have been supporting her there are angels. They are helping her learn how to cope with what is happening to her and how to help my father.
Soon after reaching out to The Alzheimer’s Association for help, my mom did something incredible. Working with the Association gave her the wings to create a support group in her community, somewhere she felt safe talking about Dad — her local church. She is bringing in speakers and people involved with the Association who can help anyone and everyone who needs it. I am beyond proud of my mother for doing this. She has turned her pain into purpose, which is so courageous. I hope the group will grow as more people see how important it is to talk about what they are going through.
Can you talk a bit about your experience as a long-distance caregiver? How is your role different from those of your other family members? How do you all work together?
I live in Los Angeles, and to be away from Dad has been gut-wrenching. My dad does have support, as my whole family lives on our farm in south Georgia. This includes my mom, dad, brother, sister and her husband, their kids, my cousins, uncle, grandmother – my entire family.  But because I have a baby who has had two open heart surgeries in the last year, I have not been able to travel back home the way I used to. This has made everything even more difficult. In the past, I would fly home every other month.
There is nothing more I would love than to be able to be home, helping both my mom and dad. He did so much for me as a child. He was an amazing dad. I am desperate to give back to him for all that he has done for me. It’s just not possible right now, not until Bennett is completely well.
However, I support my family in other ways — phone calls, connecting my mom with people who can offer her local support making sure everyone in my family is on the same page and connected, or having my mom come stay with me in L.A. to give her a break. By staying connected, I can also track how my mom is coping and stay ahead of her needs at all times.
I am flying home with my older son in a few weeks to see my dad, and while it never feels like enough, I have to remind myself that I am doing the best I can given the circumstances facing my family.

At the end of the day, we have each other’s backs and stand together as a family. If you don't have that family support, ask friends if they can be part of your support system. I’ve found that ten times out of ten, people will raise their hands to help.
What are some of the ways you’ve been spreading awareness of Alzheimer’s and dementia?
I’ve brought awareness to Alzheimer’s and dementia by starting a Walk to End Alzheimer’s team, posting blogs on my website “What We Are,” and speaking at events and on television. For Alzheimer’s and Brain Awareness Month in June, I hosted Hallmark’s morning show “Home and Family.” I wore purple and spoke on air about my dad, his illness and how people can help.
In the film industry, there are no small roles. Whether its hair and makeup, grips, PAs, an actor with one line or the lead, every role matters. I believe in this outside of the industry, too. There are no small favors. There are no small acts of service. In raising funds for the Walk to End Alzheimer’s with my friend Ashley Williams, we started by asking for small donations. After all, if 100 people give $5, that is fantastic. Every dollar raised, every friend that showed up to the walk, every person who posted on social media — it all makes a difference.
I’ve overcome so much in my own life. And now I am certain that that entire struggle was just preparing me not only for the last two years of my life, but to be able to use my platform for good. Between Children’s Hospital of Los Angeles and the Alzheimer’s Association, I feel a tremendous sense of purpose in my life being able to help others.
How do you share the life lessons you’ve learned and your bond with your dad with your own children?

It’s my dad’s mind that has a disease, not his soul or spirit. We have to just keep finding ways to connect with his soul. Music is a really big part of our story. He has always loved music and it has helped tremendously in his struggle with dementia. It’s like the music passes right through the disease into his spirit and being. My dad and I always bonded over music and I’ve passed that along to my children. We always have music on in the house and it brings great joy to our lives. And, in a way, I feel like I am passing along the legacy of my dad through music.
Every day I teach my boys about kindness, patience, giving back and being responsible – all the things my dad taught me. And I don’t just teach it, I live it. My philosophy is that you live your beliefs not through your words but through your actions. Walk the talk. I also am very involved in their lives. Just like my dad was my basketball coach and drove me to voice lessons, I am on three committees at my son’s school. I am there all the time.

What advice do you have for others grappling with Alzheimer’s or dementia in their family? What advice do you wish you had been given?
I recently completed a movie in Vancouver, and it was no accident that my driver to and from set was a woman whose dad also had Pick’s. For us to be paired together every day on that project was divine. We were meant to meet in that van. She gave me a really amazing piece of advice. She told me to love my dad, but not just with my heart. She said: “Touch him, hug him, kiss his face, give him all the physical contact and love you can possibly give. It’s not just for him; it’s also for you.” I thought that was beautiful. Every time I am with my dad, I hug him, I hold his hand, I rub his back and comfort him. In those moments, he connects with me. It’s almost as if our physical connection, like that with music, reaches his spirit.

Another piece of advice came from my dear friend Ashley Williams. Ashley and her sister, Kimberly, would text all the moments they experienced with their mom to each other – the difficult, heartwarming, and hilarious. They wanted to remember it all … together. I loved that. It’s like sharing a journal with your siblings. Sometimes you neglect to recall these stories when you are in the midst of the disease, but if you keep a text message chain going, you stay connected.
What lessons have you learned along the way?
I’ve found that you have to find the humor in the more difficult moments. I remind my mom of this daily. She was recently belaboring over her grandkids eating too much sugar. “These kids are going through Pop-Tarts like crazy!” Then she went out to my dad’s truck. There were piles of boxes and boxes of Pop-Tarts that he had been stockpiling; one of his many odd behaviors due to his disease. Yes, it is heartbreaking. But at the same time, it’s a 64-year-old man hoarding Pop-Tarts! You have to laugh.
Surprisingly, working in the entertainment industry has helped me cope with everything that comes with Dad’s diagnosis. I know not to take anything personally. You can only control your reaction to something, not other people’s behaviors. Especially when they have this disease. He or she will forget your birthday. You may not get a Christmas gift. You will be sick and they won’t think to make you soup or take your temperature. You will get yelled at or called names. It comes along with the territory. When someone you love with Alzheimer’s says something hurtful, you have to remember that it’s the disease speaking, not the person.
I’ve also been given great purpose in the last few years. I used to believe my purpose was to be an actor, producer, writer. Now I know that those things are my job. My purpose is greater than any job. You can definitely live out your purpose through your job, but it is not your purpose. My purpose is to become the best version of myself in this lifetime and to leave the world in a better place than I found it. I want to help make people’s lives better. I want to make a difference. Being a spokesperson for the Children’s Hospital of L.A. and a champion of the Alzheimer’s Association has given me tremendous purpose, and I couldn’t be more grateful. Life can be devastating and heartbreaking and you can also find great purpose and so much good in that pain. Miracles are all around us. A fantastic support system is just one call away. There is goodness all around us. We just have to be vulnerable and brave enough to open our hearts to it.
About Nikki: Nikki can be seen in the Hallmark movie “Reunited at Christmas,” which she also executive-produced. She also participated in the Los Angeles Walk to End Alzheimer’s on November 3 with friends and family.

All photos are courtesy of Nikki DeLoach.

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