To begin with, stress flows from the love that we feel for our parents. The parent-child relationship is one of the closest there is. Because we love them so dearly, seeing them suffer causes us stress. It also makes us want to provide for them the same high-quality care they provided for us when we were children. If we feel that we can’t measure up, we have stress from our guilt.
With all that’s going on in our country, our economy, the world, and on social media, it feels like so many of us are under a great deal of stress. Caring for elderly or aging parents can be particularly stress-inducing. We know chronic stress can be as unhealthy as smoking a quarter of a pack a day. What are stress management strategies that people use to become “Stress-Proof?” What are some great tweaks, hacks, and tips that help reduce or even eliminate stress when caring for our aging parents? In this interview series, we are talking to authors, and mental health experts, who can share their strategies for reducing or eliminating stress. As a part of this series, I had the distinct pleasure of interviewing Barbara Huelat.
Barbara J. Huelat is a prominent Human Centric Healthcare Designer, author, and speaker. Ms. Huelat has created healing environments and solved health challenges for more than 300 healthcare organizations and serves as a healing environment consultant to healthcare facilities, product manufacturers, academia, institutions, and the architectural design community. By placing humanity at the core, her pioneering mindset proves that human-centric designs impact healing, improve the human experience, affect health outcomes, and are cost-effective.
Thank you so much for joining us in this interview series! Before we dive in, our readers would love to know how you got from “there to here.” Inspire us with your backstory!
I remember being a child of 10 and walking through what seemed like a human warehouse of older people. I was at our annual scouting event, where we sang Christmas carols and distributed little handmade gifts to endless rows of frail older people in their beds at Oak Forest Infirmary. It was an image of sadness and hopelessness. As a child I wondered, “Is this what happens to people when they get old?”
The image of that infirmary was burned into my mind. It stayed with me throughout my life, and I can still see it even 60 years later. It was so impactful that it created a desire to create healing environments, which led me to my profession of healthcare design. I saw those faceless people in the rows of beds as I studied the importance of the environment in the healing process. The image was still there as I discovered design intervention for change was both possible and beautiful.
When my loved ones started aging and I became personally involved in their care, that image became more poignant than ever. As I worked through the struggle, enjoying successes and suffering failures that included a stress-induced heart attack, I learned so many valuable lessons that I was compelled to write a book about them.
What lessons would you share with yourself if you had the opportunity to meet your younger self?
My mom often mused, “Too soon old, too late smart,” which was the common sense wisdom of Doctor Livingston. Again and again, those words have reminded me that, “We are what we do,” and that we often regret what we haven’t done. Lessons learned are important, but we need to move beyond them. It’s never too late to grow and move forward.
That being said, I would definitely share with my younger self the many lessons on caregiving that are contained in my recent book, especially the importance of becoming a sustainable caregiver. My guidance to my younger self would sound something like this: “Becoming a caregiver for a person with dementia puts your personal health at risk. You have heard the attendant on a plane tell you to help yourself first and then your children? That is my advice to you now. Take care of yourself first. Don’t wait until you have a medical emergency to find support. Use education, adult day programs, in-home professional support, support groups, training, therapy, exercise, and sleep as tools to keep your body and mind resilient. Build your caregiving team broadly and deeply so that you can lean on others to fill in for you while you take care of yourself — without guilt or remorse — and remember that science shows that taking care of yourself benefits the person you are caring for.”
None of us are able to experience success without support along the way. Is there a particular person for whom you are grateful because of the support they gave you to grow you from “there to here?” Can you share that story and why you are grateful for them?
I am grateful for Lucy Weller, a residential design client who taught me that design saves lives. Early out of design school, Lucy showed me that environment design was more than aesthetics and how it greatly impacted health. She also urged me to return to graduate school in environmental psychology.
I am also grateful for Wayne Ruga, a healthcare architect who introduced me to the new concept of a healing environment and urged me to define it. Many years later, we still struggle to define its elusive nature.
I am equally grateful for my husband, Joe. He was my life and my business partner, who I worked alongside every day learning, defining, and designing healing environments for healthcare facilities. In the end, I became his caregiver as he made the dementia journey.
Finally, I am grateful for those in my dementia caregiving journey, including my mom, grandmother, and father-in-law. Caring for your own loved ones forces you to see things through a lens that is profoundly human and emotional.
Are you working on any exciting new projects now? How do you think it might help people?
The most exciting project I’ve been working on is my new book, “Taming the Chaos of Dementia: A Caregiver’s Guide to Interventions that Make a Difference.” As a caregiver myself, I know resources and guides are essential. This book provides a compassionate and insightful guide to those facing the tumultuous journey of dementia. It offers solace, support, and practical strategies to navigate the challenging path.
I am also working on a project that is exploring the success of two of my past memory care design projects in Cedar Rapids, IA. The first, MeadowView Memory Care Village, was designed in 2007 as a visionary model that embraced the principles of experiential design, directly connecting with the emotional memories of the residents. The other, The Views, is a senior living campus completed in 2019 to meet the WELL Building Standard gold standards, which emphasize the occupants’ health and wellbeing.
The purpose of the project is to delve into the reasons behind the exceptional pandemic response of these two facilities and extract valuable lessons for the future. The Views opened its doors just before the onset of Covid, but remarkably reported no cases of Covid among its residents during that challenging period. The project is part of a broader research project being done in collaboration with colleagues from Taichung University in Taiwan that is focused on the sustainability of senior living facilities.
Ok, thank you for sharing your inspired life. Let’s now talk about stress. How would you define stress?
I define stress as the response of the body, mind, and spirit to unplanned outside events or pressure. There are two kinds of stress: acute stress, which is natural and needed for survival, and chronic stress — or long-term stress — which is destructive and can kill you.
In the Western world, humans typically have their shelter, food, and survival needs met. So what has led to this chronic stress? Why are so many of us always stressed out?
Chronic stress does not dissipate or go away. It’s stress that we don’t deal with because we lack a ready solution. Chronic stress gnaws on us day after day and night after night, and often starts out as a little problem. For caregivers, it might start as, “I need to take mom to the doctor, and now I’m late for work.” Then the situation evolves as mom falls in the bathroom, which requires a trip to the emergency room and the loss of an entire day at work. Then mom’s injury prevents her from living alone, so she moves in with you, totally disrupting you and your family’s life. At that point, you’re dealing with chronic stress.
What are some of the physical manifestations of being under a lot of stress? How does the human body react to stress?
When our body, mind, and spirit are continually under stress, we remain in acute survival mode, never having a chance to recover. We are flooded with the “flight or fight” hormones, which soon start to cause damage. At first, it may keep us awake at night or cause us to overeat. Then chronic worry may set in, triggering depression.
In my case, the physical manifestation was a heart attack. My cardiologist assured me that if I didn’t deal with the chronic stress, it would kill me. If it wasn’t another heart attack, it might be cancer.
Is stress necessarily a bad thing? Can stress ever be good for us?
Acute stress is good for us because it’s our survival mechanism that kicks in the “flight or fight” response. If we suddenly find out that the dinner cooking on the stove burst into flames, we need an acute stress response to quickly grab the fire extinguisher and put it out. The response quickly takes over, supplying our body with the necessary adrenaline hormones to respond accordingly. Once the fire is put out, our body resumes our pre-stress status without negatively affecting our health.
Let’s now focus more on the stress of caring for elderly or aging parents. This feels intuitive, but it is helpful to spell it out in order to address it. Can you help articulate a few reasons why caring for our aging parents can be so stressful?
To begin with, stress flows from the love that we feel for our parents. The parent-child relationship is one of the closest there is. Because we love them so dearly, seeing them suffer causes us stress. It also makes us want to provide for them the same high-quality care they provided for us when we were children. If we feel that we can’t measure up, we have stress from our guilt.
Conversely, for those who had a difficult relationship with their parents, stress can flow from resentment. You might resent the responsibility of taking care of them now if they weren’t there for you when you needed them.
Stress also arises from the disruption that becoming a caregiver brings to your life because it often means adapting to new living arrangements for you and your family — often with less privacy — and new tasks that you must fit into your already busy schedule. A wide range of activities from entertaining to travel to fitness can be disrupted by your new responsibilities.
One of the most stressful elements of caregiving can be the added financial demands. Caregiving has a number of unexpected costs that often must be covered while your income decreases due to having less time for work. Caregiving stress can also come from the added burden of managing your parents’ finances.
Finally, we can feel stress from the unpredictable and sometimes unruly behavior of those for whom we are caring. Not only is it disruptive to us, but it can also be dangerous for them. Constantly managing that behavior piles on the stress.
Can you share with our readers your “5 Things You Can Do To Reduce Stress When Caring For Your Elderly Or Aging Parents”? If you can, please share a story or example for each.
The first thing is recognizing that caregiving will be chronically stressful. From day one, you must acknowledge that caregiving brings long-term stress into your life. If you don’t have a plan for dealing with it, it will harm your health. In some cases, it could kill you. I didn’t realize just how much the stress was affecting me until I had a heart attack because of it. As I saw it, I was dealing with small caregiving issues that didn’t seem very challenging, but their cumulative effect as they played out all day long, 24/7 — combined with all of my other responsibilities — was more than my body could handle.
The second thing is to get smart. You must learn everything you can about the disease that your loved one has. What are the symptoms and the triggers? What is the prognosis? What are the phases of the disease? Plan ahead for these phases so you can avoid the crisis of the unknown with a plan in hand. Constantly remind yourself that knowledge is power. This was a great stress buster for me. Knowing hallucinations were a common symptom of mom’s Parkinson’s disease helped me to respond calmly when she expressed her concern about a strange family she saw living in her basement.
The third thing is to get help. You cannot do it alone. Build a team by enlisting family and friends, and distribute tasks. Sharing the load is a stress buster. The help I received was invaluable. Jim stayed with Mom on Saturday mornings so I could take a bike ride, Joanne regularly picked up ice cream and shared it with her, and Vicky stopped in after church to have tea with her. My sister-in-law found a great online resource for medication management. Don’t be afraid to ask all of your family and friends for help. You’ll find plenty who are eager to lend a hand.
Next, be good to yourself and forgive yourself when you make mistakes or are sharp, cross, or angry. You’re only human and will inevitably make mistakes. I found it helpful to use mistakes as a learning opportunity. I kept a notebook about responses that were helpful in mitigating disruptive behaviors and those that weren’t — contributing to meltdowns. The notebook helped me and the other members of my team remember what worked. For example, we all benefited from knowing that mom hated eggs.
Finally, find meaningful respite for yourself. This is beyond important. It is critical. Your decision-making is greatly improved when you are rested, so make it a priority. Take a walk, have lunch with a friend, watch a funny movie, learn biofeedback, or practice tai chi. I can remember a friend paying for me to have a massage as a break from my caregiving, which should have been a time of respite for me, but I was so stressed and eager to get it over with that I totally blew it. That was a warning sign to do better at having meaningful respite in my life.
Do you have any favorite books, podcasts, or resources that have inspired you to live with more joy in life?
There are a number of books that inspired me to live with more joy. They include “Man’s Search for Meaning” by Victor Frankle, “Biophilic Design” by Stephen Kellert, “Building for Life” by Stephen Kellert, “Balance Within” by Esther Sternberg, “Flow” by Mihaly Csikszentmihalyi, and “Leonardo DaVinci” by Walter Isaacson.
Podcasts that inspire me include Krista Tippet’s “On Being,” Peter Attia’s “The Drive,” Shankar Vedantam’s “Hidden Brain,” and Dr. Laurie Santos’s “The Happiness Lab.”
You are a person of great influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I would like to see a comprehensive and holistic approach to caring for persons with dementia that combines human-centric technologies, innovation, community involvement, affordable housing, non-pharmaceutical interventions, and improved medical services. They might include elements such as:
- Early detection and diagnosis initiatives
- Community engagement and dementia-friendly training
- Dementia education in schools, workplaces, and communities
- Support and training for caregivers
- Family education, support, training, and respite
- Respite care for caregivers
- Staff skill improvement
- Personalized care places
- Dementia friendly environments
- Dementia friendly infrastructure
- Intergenerational memory care villages that provide affordable housing
- Physical and cognitive stimulation
- Telemedicine and remote monitoring
- Development of dementia-friendly technology
- AI integration including data-driven personalization, adaptive assistance, therapy, monitoring, emotion recognition, social robotics, and safety support
- Interventions to bring joy, pleasure, entertainment, and meaning at all phases of dementia
- Research and drug development
- Global collaboration
- Government and policy advocacy
- Cultural innovation, autonomy, dignity, and individual rights for those with dementia
Combining these elements in a structured and holistic manner can help improve the lives of people with dementia and their caregivers, potentially delaying the progression of the disease and enhancing overall quality of life and well-being.
What is the best way for our readers to continue to follow your work online?
Visit my website at www.barbarahuelat.com where you’ll find blog posts, resources, and Q&A on dementia.
Thank you so much for these insights! This was very inspirational and we wish you continued success in your great work.