Trish Laub was a caregiver to her father with Alzheimer’s and author of The Comfort in their Journey book series. Here, shares guidance on caregiving in the time of public health crisis.
COVID-19 is only the third thing in my six decades of life to cause me real concern. The first was 9/11, and the second was hearing of Dad’s Alzheimer’s diagnosis.
I was a hands-on caregiver for both my parents, one living with Alzheimer’s and the other with cancer, and managed their overall care as well their medical care. My parents lived through the Great Depression and both did their part during WWII. They did not experience a pandemic, but I have thought about what I, as a caregiver, would do had my dad been under my care at this time.
As with all projects in my life, including providing care, I’ve had a philosophy, goal and strategy to accomplish that goal. I’ve considered what parts of that model would have changed in regard to the care of my dad due to this pandemic and the resultant requirement for quarantine and isolation.
1. Evaluate Your Philosophy and Goal
For me, my philosophy of recognizing my dad as the loving man that he always was instead of as a disease, being his guardian and protector, and following the golden rule would remain unchanged. The goal would always be quality of life. During times of uncertainty, especially potential physical threat, it is primally instinctual to think in terms of survival and therefore longevity, but that is really not the goal.
2. Modify the Strategy
My family created a successful strategy: things that worked in protecting the quality of Dad’s life throughout his final days.
Today, I would continue that strategy, but due to social distancing, would now find that elements of it would become even more important. My greatest concern would quickly become the negative impact of prolonged social isolation.
The effects of loneliness on health have been documented to be equivalent to having high blood pressure, smoking as much as 15 cigarettes a day or being obese. It may also contributed to increased hospital readmissions and increase the risk of death by between 50 to 80 percent, depending on the demographic.
While doing everything I could to minimize the chance that my dad contracted COVID-19, I would in parallel begin working to minimize the negative impact of social isolation.
3. Avoid Increasing Anxiety About COVID-19
First, I would always be mindful that as the mental abilities of someone living with Alzheimer’s become diminished, their ability to read emotions and sensitivity increase. Therefore, they may be more susceptible to fear.
My first task would be to decide how to explain any changes and lack of social contact to my dad. I had a hard rule that I would never lie to Dad and quickly learned that finesse—not in the slang context of manipulation but rather the meaning of refinement or delicacy, the skillful handling of a situation—through the use of language was my best ally.
Words like “pandemic” and “isolation” can result in fear and anxiety. While it might seem easiest for me to say nothing, my dad would know that something was different; he would sense it and feel it emotionally. Instead of talking about COVID-19 or a pandemic, I would explain to my dad that there was a bug going around and that for all of our safety, we had been asked to stay at home and not have visitors, including other family members.
And with a smile on my face, I would immediately add that everyone was fine and would be back soon, that he and his family were loved and safe. Finesse is the ability to tell the truth in a way that allows others to continue to feel safe and loved.
4. Stick With Successful Routines
During this time when isolation is necessary, I would continue everything that had already been important to Dad’s quality of life, but also work to keep him feeling calm and connected to his loved ones.
That may include continuing the routine that I did every time I entered his home, greeting him while connecting with him directly through his eyes, minus any physical touching. I would continue activities that were familiar such as watching old TV programs and movies, listening to his favorite music and encouraging him to dance or move in his chair; and encouraging him to utilize cellular memory by doing tasks such as sorting or folding laundry according to his ability. We would continue to live, love, dance, sing and laugh a lot, all without touching.
5. Adapt to Minimize Isolation Through Virtual Socializing
During the COVID-19 pandemic, it is important to focus on the goal of quality of life, but more so to be adaptable. Charles Darwin said, “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change.”
I would utilize music—the only thing known to activate all areas of the brain—to evoke emotions and assist with processing them. Music can be used to activate a sense of everything from energy to joy to calm. TV channels that play spa music accompanied by images of nature can create a sense of safety. And because we’re fortunate to live in an age of technology, I would utilize it to connect with others via video chatting, which is possible through services such as FaceTime, Zoom and Hangouts.
Netflix provides an option, Netflix Party, that allows a group to watch the same movie at the same time, and Zoom has been used to allow groups to do everything from virtual fitness classes and happy hours to playing games remotely, all creating a shared experience.
Because of the pandemic, there are a growing number of links for free access to services as well as ideas of how to keep adults and children engaged. Due to the large number, and my desire to continue to add links, I’ve posted what I’ve found at www.comfortintheirjouney.com/resources. The list keeps growing and includes free online viewing of state parks, museum tours, virtual field trips and many other things to do.
6. Prioritize Self-Care
As the caregiver, during uncertainty it can be a gift to have someone else on whom to focus. But it is even more important than ever to take care of yourself. Take a breath and a long exhale, if only for a moment, and reground and reset. Remember that you cannot water flowers from an empty watering can.
7. Repeat Positive Self-Talk
Finally, and most importantly, I would continue to tell myself, just as I would continue to tell my dad, “You are loved and you are safe.” as many times as I was able to everyday.