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An Actor Becomes a Caregiver in the Production of a Lifetime

Caring Conversation — Ron Simons

Ron Simons is an award winning Broadway and film producer and actor, and the founder/CEO of Simonsays Entertainment. Ron and Raj have been friends for over 30 years. As such, they’ve talked about just about everything, from jobs to kids to homemaking and back again. But this time, Raj wanted to dig a little deeper into something they’d only touched upon before: his nearly three decade-long caregiving relationship with his mother.

Rajiv: What is your caregiving experience, right now and in the past?

Ron: Right now, I’m part of a caring circle for a friend who was involved in an automobile accident. He was on his Vespa and hit head-on. Really horrible stuff. He’s been unconscious for about a month now. There are about 25 caregivers in this situation. A network of friends and family who’ve come together in the most amazing way to ensure an appropriate level of support is being offered … we want to do everything we can to help this person, who is so important to each of us, get better. It’s been an extraordinary thing to witness and be a part of.

It’s really been a group effort, communicating daily and even hourly, to make sure everything that needs to get done, does. Like finding the right doctor for a second opinion, who that doctor will be, if a second opinion is needed, and working with the police to understand how the accident happened. It’s been a team effort of more than a dozen plus people. Everyone just threw themselves into action in the most amazing way.

Prior to all of this, I’d been taking care of my mom for very long time. With her, it was always this delicate balance of trying to help her maintain a level of independence, but also give her the hands-on care she needed. Her independence was very important to her. I bought a house in New Jersey specifically so that she’d have her own bathroom and living area, but still be in the same house as me. But my mom prayed on it and made a decision: she wanted to stay in her own home, and she would do just that. This meant finding a support system for her in Detroit, and hiring people who could come to the house.

So I had someone go to her everyday to clean, cook, and entertain her mind as it started to become clear that she was exhibiting signs of Alzheimer’s. And of course, no one was really “good enough” because she thought, “who are these people and why are they in my house?” She didn’t like that they were a part of the home health care industry. That, or there was always something wrong with them. They “didn’t know how to cook” or “I just don’t like them.” And who can blame her? There were these people coming into her house, the house in which she’d made a life, and she didn’t know them at all. So she went through three caregivers in a very short period of time. Eventually, I hired my a cousin … that turned out to be the biggest mistake of all. Long story short, it was a rough time.

Looking back, I understand why it was so hard for my mom to accept all of this. These people were not part of her routine. She had a very normal day-to-day that grounded her. Trying to keep her comfortable, but also let her maintain her independence, and doing this all from a distance … it was challenging.

Eventually, I just started doing it all myself from New Jersey. I started monitoring spending, doing the bills and taxes. More and more, it became about living two people’s lives, both mine and hers.

My mom did agree to move into an assisted living facility many years later. But then began a steep decline. I think part of the problem was that she couldn’t take her dog with her. It may sound silly, but she had that dog for a number of years. But there was no way for it to be cared for … her capacity for care, even for herself, was so limited. So she became very cloistered. Sort of a hermit in this apartment. She wouldn’t go downstairs to have communal food, she wouldn’t engage in any of the activities. Out of her own routine, she became routine-less entirely. 

I then realized that I needed to hire individual care, even while she was in this facility. So I had someone come in for 8-hours a day. That turned out to be not enough, so I hired two people for 16-hours a day. It was getting to the point where she wasn’t really even sure where she was. She would be in various states of dress or undress when her caregivers arrived; it became apparent that she needed 24-hour care.

24-hour care is very expensive. So I moved her into a facility that specialized in Alzheimer’s patients, and that had a very homey feel to it. Again, even this “homey feel” didn’t sit well with my mom. But she was happier there … better care meant more comfort, I think. At that point, my caregiving became mostly communication with the doctors and nurses and the caregivers at the facility, making sure that she was as comfortable as possible. They played music that she loved as much as they could … music therapy became a very powerful tool.

I learned all about dementia during this time. Often, when people are suffering from this type of ailment, the suffering  stems from an infection. Said infection can deepen the dementia and make it much worse. So when someone with this type of problem starts complaining of pain, it’s a rather large issue. This is what happened with my mom. But she couldn’t pinpoint the pain. I think that ultimately, she died as a result of the infection. She could point to the discomfort, but that wasn’t effective in diagnosing the entire problem. A lot of people don’t know this about dementia. You’ve got to do the research … the work. I took care of her for about 25 years.

What is your profession? What fields are you an expert in?

I’m an actor. I also produce: Broadway shows, off-Broadway shows, independent films, you name it. I’ve got a couple television projects I’m developing right now, and we’re expanding our repertoire to include technology and curricula. In a nutshell: I act.

But before I got into all of this I was in the technology industry for a long time. I spent a number of years as a marketing manager for Microsoft, after I got my MBA. Prior to that I was a technologist. I developed artificial intelligence-based systems for Fortune-500 companies. And before that, I was working at Hewlett Packard where I developed software for manufacturing systems. I’ve done a good bit, I guess!

How have your professional skills and perspectives influenced or impacted your caregiving efforts?

Well, I think because of the industries in which I’ve worked, I’m used to having to engage in scenarios where there’s lots of data to consume and lots to make decisions over. Because of my management experience, I was used to having a team either reporting to me or having multiple projects existing at once. I think that my experience in management and marketing helped me manage the workload of caregiving … having different things to juggle, and handling the emotion of it all.

I don’t think you can talk about caregiving without delving into the idea of empathy a bit, too. It plays a huge role in all of this, much the same as it does in the realm of acting. All the best actors are great students of the human condition. They’re asked to play so many different roles that present new circumstances and new challenges. There is an incredible amount to be seen and understood. As an actor, I’ve been trained to see the gray areas as opposed to the black and white. One thing I’ve learned: there are always more gray areas than there are black and white. And while I think I’ve always been empathetic, acting increased my empathy, no doubt. When you’re stepping into another person or character’s shoes, you have to think from their perspective. It’s the only way to portray this person successfully. In caregiving, it’s much the same: What’s going to be best for them? How will they react given certain circumstances? It’s fascinating, truly putting yourself into the reality of someone else … of my mom, and of everyone else involved in her care

As far as producing and caregiving is concerned, I would say that it’s all very similar. Towards the end, when I was doing most everything for her, it was almost as if I was producing my mother’s life. I was making sure that everyone was where they were supposed to be, doing what they were supposed to do. All of it was coming together to make up this amazing story about the end of my mother’s life.

How have your caregiving experiences impacted your professional efforts?

One thing I learned the hard way, one might say, about caregiving is how our society supports or does not support our aging populations. I learned a lot about the current care around things like dementia and Alzheimer’s. What comes to mind when discussing my mom’s illness is a project I’m doing about music and the life of retired musicians and opera singers in Milan. It’s called Viva Verdi! I really wanted to tell these people’s stories because I think that sometimes we end up thinking about seniors as less human. It’s not right and it doesn’t make sense, but towards the end of the human life, it’s just sort of how it goes.

So I decided to take on this documentary, to talk about aging and how you support an aging community. And to talk about things like music, and how music has a such an amazing impact particularly on people who have suffered from dementia. Often, they’re deeply catatonic and seemingly not there at all. I remember this one woman who was 102 years old. We were playing music and her index finger just started tapping to the beat. In that moment, she was nowhere and entirely there at once. It doesn’t sound like much … just a little tap of the finger. But it was huge. Somehow, that music penetrated all those layers that separated her from the real world and got into her head. It connected with her on such a deep level, it literally moved her.

As you were describing that, it made me reflect on some of your films, like Night Catches Us, Gun Hill Road, Mother of George, and Blue Caprice… in one way or another, these are all about families and care.

That’s right. And I think part of the reason I was inspired to make those pieces is for that reason exactly. I mean, I tell people all the time … I can switch the lens to look at universal themes so that the view is seeing circumstances through the eyes of, say, someone who’s LGBTQ, or from the view of Japanese cowboys in the midwest. And while we often shorthand films like Blue Caprice as being about the beltway snipers, at its core, it’s about a father figure and a boy, and how their relationship all went wrong. So, yes, I’ve definitely been drawn to a lot of storylines that dealt with family.

What one piece of advice would you give someone who found themselves in similar caregiving situations?

I think it’s very important that you exercise self care. This point cannot be understated. You run into a lot of situations where there’s never enough time to do all the things that need to be done, both for your life and your family and your professional well-being. You have to remember to be kind to yourself.

There is no manual for caregiving. So you must understand that it’s going to be stressful … so much time and energy required. But don’t stress about every little thing. We don’t have the perfect information for every situation. If we did, all of this would be so boring. You can get advice from people who have been through it before … I encourage that.

But be kind to yourself, be kind to your loved ones, and trust the process.

Interviewed: 16 August 2018, by Rajiv Mehta; edited by Julia Rubano

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